Today was such a blah day. I think there was a bit of a letdown after yesterday went so well, which is to be expected in our current situation. Plus we got some not so hot news about Sara. So I'll start there tonight.
Two days ago, after they had taken Sara off of the blood thinners to figure out where her bleeding was, she developed a clot in her right arm. The doctors determined that they were going to let the blood thinners take care of it since they had already started her back on them. Today, Sara developed a high fever over 103, her heart rate jumped up over 100 and her oxygen saturation dropped into the 70s. This prompted the doctors to do a chest X-ray and CT scan to look for a clot in her lungs. Preliminary results show no clot, but they aren't finished reading her scans so I'm not sure if there's anything else. But something is obviously causing her to have all of these problems, it's just a matter of finding out what it is. Thankfully, she has the same nurse tonight that she had last night when she was having problems. This nurse is the reason Sara had those tests and the reason she has oxygen in her room now. So hopefully they'll be able to figure something else out tonight or tomorrow.
I haven't been able to visit Sara as much as I'd like because I go to visit Jaxson every day, so tonight I made sure I got there to see her. Her heart rate was still high, blood pressure is high, hemoglobin is low, and oxygen saturation is low without the cannula (prongs in the nose). Her fever also came back as soon as the Tylenol wore off. She's being such a trooper through all of this. I know she doesn't feel well and it's frustrating when the doctors and nurses don't take you seriously all of the time. But her body is clearly trying to tell us something. I just hope they figure it out before they send her home and she loses oxygen saturation while she sleeps. Scary thought, huh? Yeah, I agree.
And then there's Lexi, who's possibly the most awesome nine year old ever. I know she's worried about her mom and scared of what's going on, but you wouldn't know it to talk to her. I know she shows more emotion to my parents than to anyone else, but she's such a strong little girl. I worry about her through all of this. Her mom and her sister have been in the hospital for two weeks. She misses them a lot, no matter how we try to distract her or how often she gets to see them. I just want to squeeze her.
Jaxson isn't entirely out of the woods either. He's doing amazing with his antibiotics and he's eating decently from the bottle too. He actually took 15mL for me today, 12 for the morning nurse, and 8 twice this afternoon. It's progress. The only "bad" thing that happened today was that Children's called us to let us know that there was a little blood in his feeding tube. It's nothing anyone is worried about because it was bright red and likely happened when he sneezed or something. But they are keeping an eye on it to make sure it doesn't continue. Overall he's imroving, which is why I felt comfortable leaving when I did today.
My day didn't go as planned, though, and it seems as if that's going to be a running trend. The plan was for me to go see Jaxson, then Jayson and Jeffrey would meet me down there and Jeffrey would go to the clubhouse for awhile. Jayson would then go to work and I would get a little extra time with Jaxson since I left early yesterday, and Jeffrey would just get a late nap. Then my mom called with the news about Sara. I didn't want to take the chance that Jeffrey wouldn't get a nap, so I left when Jayson did to come home and put him to bed. So I didn't get that much time with Jaxson. Again. It's killing me to have two kids in different places. I can't be two places at once, much as I would like.
While I hate that I can't have my boys both at home, I have to applaud Jeffrey once again. He is, by far, the absolute best three year old on the planet. I took him with me to go see Sara and he was so well behaved. I had to get on him a couple of times for not listening, but that's normal for any three year old. He's just so good and entertains himself so well with the iPad or his toys. I suppose I can take some credit for that ;) it's also the reason he gets his way a little more right now than he used to. He deserves it for being the way that he is and being the best big brother Jaxson could have.
So now I'm home with my monster. Nothing new one Sara and nothing new on Jaxson. With Jaxson, no news is good news. With Sara, it just means they haven't figured it out yet. Hopefully the news I get tomorrow is all positive on both counts. I'm also looking forward to getting some time with my husband tomorrow. Thanks to my fabulous mother-in-law who's going to watch Jeffrey for a few hours for us. No idea what we're doing yet, but it will be together!
Saturday, July 28, 2012
Friday, July 27, 2012
No More Infection!
Today was a fabulous day! I went to see Jaxson as I do every morning with the intention of leaving around 1 to head home and take care of Jeffrey while Jayson went to work. Well, Jeffrey had other ideas. He and Jayson were at the park and Jeffrey fell. He was done at the park after that and asked to come to the hospital. Then he asked if I was there because he wanted to see me and spend time with me. I love that kid!
Meanwhile, I was hanging out with Jaxson who looked absolutely amazing today. He had his color back and was acting much better. Which makes sense as his hemoglobin was up to 12.1! I was able to feed him this morning too, which was nice because he hasn't had food in three days. They started him on half-feeds to make sure his body would tolerate the food on top of the antibiotics, and he at the full 24mL for me! I was so excited! Not only is that the most he's ever taken for me, but it's the most he's ever taken altogether.
The doctors made no changes to Jaxson's care today, just trying to get him back on regular feeds again. All of his cultures came back negative, so he's on antibiotics for 10 more days. That also meant that they didn't have to draw blood today, yay! They'll have to take some tomorrow or the next day I think because they'll check it again to make sure everything is still the same, but he gets to go a day or two without getting stuck.
Once I saw that Jaxson was okay, I decided to leave when Jayson left this morning. Jeffrey was all about spending time with me, so I wanted to make sure I gave that to him. We went to lunch together and then came home and played before he took a nap. While he slept, I picked up the house and did a load of laundry. I also checked the mail and had something from my payroll department. I thought that was odd so I opened it and it was a pay stub. Now I was thoroughly confused, so I checked my bank account and sure enough, I had more money! They made an additional deposit on Monday, which I hadn't seen yet, as an adjustment to the mess up from the week before. So, while Jeffrey slept I paid all of our bills!
Talk about a great feeling! When Jeffrey woke up, I fed him some chicken nuggets and then we went to the store to get groceries. And this kid has been at my side all day. He's currently laying in bed next to me watching the opening ceremonies of the Olympics because he wants to sleep with me. I think he's enjoyed spending so much time with me today, I know I enjoyed spending time with him! He's such an amazing kid. I couldn't ask for a better son, and I can't imagine any other three year old reacting this way to our current situation.
I feel so relieved. A huge weight was lifted off of my shoulders with that paycheck. Now everything is paid and caught up the way it should be. And I really don't hurt that much after all the moving around I did today. I'm kind of surprised because I felt like I was pushing it by going to the grocery store. And I might be a little more sore than I normally am, but I feel pretty good overall. Of course, I may pay for this all tomorrow, but for now I'll take it.
Meanwhile, I was hanging out with Jaxson who looked absolutely amazing today. He had his color back and was acting much better. Which makes sense as his hemoglobin was up to 12.1! I was able to feed him this morning too, which was nice because he hasn't had food in three days. They started him on half-feeds to make sure his body would tolerate the food on top of the antibiotics, and he at the full 24mL for me! I was so excited! Not only is that the most he's ever taken for me, but it's the most he's ever taken altogether.
The doctors made no changes to Jaxson's care today, just trying to get him back on regular feeds again. All of his cultures came back negative, so he's on antibiotics for 10 more days. That also meant that they didn't have to draw blood today, yay! They'll have to take some tomorrow or the next day I think because they'll check it again to make sure everything is still the same, but he gets to go a day or two without getting stuck.
Once I saw that Jaxson was okay, I decided to leave when Jayson left this morning. Jeffrey was all about spending time with me, so I wanted to make sure I gave that to him. We went to lunch together and then came home and played before he took a nap. While he slept, I picked up the house and did a load of laundry. I also checked the mail and had something from my payroll department. I thought that was odd so I opened it and it was a pay stub. Now I was thoroughly confused, so I checked my bank account and sure enough, I had more money! They made an additional deposit on Monday, which I hadn't seen yet, as an adjustment to the mess up from the week before. So, while Jeffrey slept I paid all of our bills!
Talk about a great feeling! When Jeffrey woke up, I fed him some chicken nuggets and then we went to the store to get groceries. And this kid has been at my side all day. He's currently laying in bed next to me watching the opening ceremonies of the Olympics because he wants to sleep with me. I think he's enjoyed spending so much time with me today, I know I enjoyed spending time with him! He's such an amazing kid. I couldn't ask for a better son, and I can't imagine any other three year old reacting this way to our current situation.
I feel so relieved. A huge weight was lifted off of my shoulders with that paycheck. Now everything is paid and caught up the way it should be. And I really don't hurt that much after all the moving around I did today. I'm kind of surprised because I felt like I was pushing it by going to the grocery store. And I might be a little more sore than I normally am, but I feel pretty good overall. Of course, I may pay for this all tomorrow, but for now I'll take it.
Thursday, July 26, 2012
Blood Transfusion
It was another long day at the hospital today. I got there only to learn that Jaxson's hemoglobin dropped to 7.4 and he would need a blood transfusion. There wasn't enough time to have them check and see if I was a match, plus they were only giving him 45mL, so they referred to the blood bank to get what they needed. Before they could do that, though, they had to draw more blood for labs and get an IV started. Jaxson's previous IV came out last night because he peed when they were changing him and it got all over his IV, the dressing and his ID band. Which really sucked since they had to get him another IV today.
If you read the blog from two days ago, then you know how hard of a time they had getting Jaxson's IV in and blood drawn the other day. It took 10 sticks, three hours and the IV team to get it done. Unfortunately, today was no different. Except that I stayed in the room this time. Ten more sticks from four people and another 3 hours later they finally had enough blood for the cultures but no dice on the IV. Doctor said not to stick him again and they would just do the transfusion into the PICC line. They prefer not to do it hip that way, but at least they stopped sticking my baby. And he did so well through all of that. He didn't cry at all for the first person, who stuck him twice. And I think he only started crying for the next two because he was tired of being touched and held down.
Once they got all that done, Jaxson was quite content to lay on my chest and chill out for awhile. And no wonder, besides all of those people messing with him to try and get his blood, they had to use a catheter and get a urine sample and receive his antibiotics during that time. Then it was time for them to start his blood, which they administered over a two hour period. I could have held him during that time, but he was on a pretty short "leash" with the blood and I figured it was better to let him rest. He got a little fussy toward the end, so I did pick him up then, but I think he was pretty happy to lay in his bed and be left alone.
Once the transfusion was done, you could see how much better he felt already. He was already looking and acting better that morning with the aid of the antibiotics, but he was still pale and not quite himself. He was definitely almost back to his normal skin color when I left, and he was awake and alert and responsive to my and my moms voices. It made me feel a whole lot better about leaving to pick up Jeffrey.
Right before we left, the nurse practitioner came in and let me know that the bacteria in Jaxson's urine was the same as what was in his blood, so the two infections were definitely related. They also said he was already on the right antibiotics and they were going to continue to monitor his reactions to them. They'll check his hemoglobin again around 1am an they'll do more blood cultures tomorrow to see how his infections are doing. I'm hopeful that those test will come back negative tomorrow. Once they do, Jaxson will have to be on antibiotics for an additional 10 days. Which means he'll have the PICC for at least that long.
But, as long as he's reacting well to everything, they were going to start allowing him to eat again tonight. So at least we can get that back on track. And they put his oxygen back down to 0.1 to try and get him off of it as well. So things are moving in the right direction again and I'm crossing my fingers that he really picks up on his eating after this. He was working really hard on his pacifier today, pretty much all day while people messed with him because I was holding it in his mouth. I think he would have rated well today if he were allowed.
My body is so tied. When I got up this morning, I had every intention of leaving the hospital at 1pm to come home and spend time with Jeffrey while Jayson was at work. But Jaxson had other ideas and I didn't end up leaving until almost 6pm. Thankfully my dad was able to watch Jeffrey today which allowed me to be with Jaxson during all of this stuff today. I finally got back home around 8, only to go straight to my room an pump. Oh yes, I did that every 3 hours today too. I'm beat. I miss Jeffrey terribly and I know he misses me. I miss Jayson. I miss my dog.
I also came to the realization today that Jaxson is not going to be home before I have to go back to work. I don't even know how that's going to work. I know I can call as often as I want, but it's not the same when I can't see him myself. And if I think I'm tired now, how am I going to feel when I have to work an 8 hour day, come home and take care of Jeffrey and still try to find time to see Jaxson. And it feels like I'm never going to see my husband again.
And now I'm just whining. Jaxson is in the best place possible for him and he's getting the care and attention he needs. Jeffrey will bounce back from this just like everything else that's been thrown at him. Jayson and I will have plenty of time together in the future, so sacrificing a ittle right now isn't the end of the world. And sleep is overrated anyway, so I'll just keep drinking my coffee. I'm very lucky and blessed to have an excellent family and support system. Not everyone in this situation can say the same, so I try not to complain.
On that note, I think it's time for me to take a quick nap before I pump one last time. Jeffrey has already fallen asleep with his hand on my leg and Jayson went to check on Jaxson so I can rest a little easier tonight. Thank you to everyone who has been praying! We'll take as many of those as we can get! And for those of you asking how you can help, the biggest thing besides prayers we could use is food. Having any sort of meal that doesn't consist of fast food doesn't happen often because of all of our running. So if you are looking for a way to help out, cook us dinner one night. Something that will keep if there ar leftovers, or can be frozen if people all show up at once. I think that would be a huge help for all of us. But please don't feel obligated, I only mention it for the people who have asked how they can help. And we thank you in advance for any type of support you've given, even if it's just to drop a line and let us know you're thinking about us. That means more than you know!
If you read the blog from two days ago, then you know how hard of a time they had getting Jaxson's IV in and blood drawn the other day. It took 10 sticks, three hours and the IV team to get it done. Unfortunately, today was no different. Except that I stayed in the room this time. Ten more sticks from four people and another 3 hours later they finally had enough blood for the cultures but no dice on the IV. Doctor said not to stick him again and they would just do the transfusion into the PICC line. They prefer not to do it hip that way, but at least they stopped sticking my baby. And he did so well through all of that. He didn't cry at all for the first person, who stuck him twice. And I think he only started crying for the next two because he was tired of being touched and held down.
Once they got all that done, Jaxson was quite content to lay on my chest and chill out for awhile. And no wonder, besides all of those people messing with him to try and get his blood, they had to use a catheter and get a urine sample and receive his antibiotics during that time. Then it was time for them to start his blood, which they administered over a two hour period. I could have held him during that time, but he was on a pretty short "leash" with the blood and I figured it was better to let him rest. He got a little fussy toward the end, so I did pick him up then, but I think he was pretty happy to lay in his bed and be left alone.
Once the transfusion was done, you could see how much better he felt already. He was already looking and acting better that morning with the aid of the antibiotics, but he was still pale and not quite himself. He was definitely almost back to his normal skin color when I left, and he was awake and alert and responsive to my and my moms voices. It made me feel a whole lot better about leaving to pick up Jeffrey.
Right before we left, the nurse practitioner came in and let me know that the bacteria in Jaxson's urine was the same as what was in his blood, so the two infections were definitely related. They also said he was already on the right antibiotics and they were going to continue to monitor his reactions to them. They'll check his hemoglobin again around 1am an they'll do more blood cultures tomorrow to see how his infections are doing. I'm hopeful that those test will come back negative tomorrow. Once they do, Jaxson will have to be on antibiotics for an additional 10 days. Which means he'll have the PICC for at least that long.
But, as long as he's reacting well to everything, they were going to start allowing him to eat again tonight. So at least we can get that back on track. And they put his oxygen back down to 0.1 to try and get him off of it as well. So things are moving in the right direction again and I'm crossing my fingers that he really picks up on his eating after this. He was working really hard on his pacifier today, pretty much all day while people messed with him because I was holding it in his mouth. I think he would have rated well today if he were allowed.
My body is so tied. When I got up this morning, I had every intention of leaving the hospital at 1pm to come home and spend time with Jeffrey while Jayson was at work. But Jaxson had other ideas and I didn't end up leaving until almost 6pm. Thankfully my dad was able to watch Jeffrey today which allowed me to be with Jaxson during all of this stuff today. I finally got back home around 8, only to go straight to my room an pump. Oh yes, I did that every 3 hours today too. I'm beat. I miss Jeffrey terribly and I know he misses me. I miss Jayson. I miss my dog.
I also came to the realization today that Jaxson is not going to be home before I have to go back to work. I don't even know how that's going to work. I know I can call as often as I want, but it's not the same when I can't see him myself. And if I think I'm tired now, how am I going to feel when I have to work an 8 hour day, come home and take care of Jeffrey and still try to find time to see Jaxson. And it feels like I'm never going to see my husband again.
And now I'm just whining. Jaxson is in the best place possible for him and he's getting the care and attention he needs. Jeffrey will bounce back from this just like everything else that's been thrown at him. Jayson and I will have plenty of time together in the future, so sacrificing a ittle right now isn't the end of the world. And sleep is overrated anyway, so I'll just keep drinking my coffee. I'm very lucky and blessed to have an excellent family and support system. Not everyone in this situation can say the same, so I try not to complain.
On that note, I think it's time for me to take a quick nap before I pump one last time. Jeffrey has already fallen asleep with his hand on my leg and Jayson went to check on Jaxson so I can rest a little easier tonight. Thank you to everyone who has been praying! We'll take as many of those as we can get! And for those of you asking how you can help, the biggest thing besides prayers we could use is food. Having any sort of meal that doesn't consist of fast food doesn't happen often because of all of our running. So if you are looking for a way to help out, cook us dinner one night. Something that will keep if there ar leftovers, or can be frozen if people all show up at once. I think that would be a huge help for all of us. But please don't feel obligated, I only mention it for the people who have asked how they can help. And we thank you in advance for any type of support you've given, even if it's just to drop a line and let us know you're thinking about us. That means more than you know!
Wednesday, July 25, 2012
Urinary Tract and Blood Infections
Today was another long day. It started with a phone call from Children's at 6:30 this morning. Thankfully, I was already up and pumping so it didn't wake me up. I think that would have been worse. The night nurse was getting ready to leave and wanted to update me before she left. More of Jaxson's tests came back. Not only does Jaxson have a urinary tract infection, but he has a blood infection. And a pretty serious one. I forget what the doctor called it, but it's something that's pretty concerning in babies. So they put him on an additional antibiotic that's pretty strong and has the potential to make him sick. So I finished what I was doing and left the house to go see my baby.
He still looked really pale when I got there this morning and after talking to the doctor, I learned that his blood count was down to 8.4. It still wasn't low enough for them to do a transfusion unless he started showing signs that he needed it. The doctor was really surprised that the infection spread to his blood and she told me that if he got any sicker they would move him back up to the NICU where he would have his own nurse. They decided to stop feeding him and go back to giving him nutrition through his PICC line. So his feeding tube is gone, which is nice in a way. I'm sure it feels better to not have that in.
I left for a few hours in the afternoon to come home and see my boys and then went back this evening for about an hour. When I went back, he still looked pretty pale, but he was awake and alert. I held him the whole time I was there and all he wanted was to look at mommy. I also found out when I went back that they got his respiratory tests back and everything was negative, so once they get approval in the morning, we can lose the gear! I'm really hoping that happens because it really sucks to not be able to touch him.
Jaxson is showing us what a true fighter he is. He knows that if he gets sicker he's moving back up to the other floor and I really think he likes where he is now. The Ono sign that the antibiotics are bothering him is he's got a ittle diarrhea. He hasn't thrown up and his vitals have remained stable. His breathing and heart rate are a little higher than what he usually runs, but it's nothing dangerous.
I really enjoyed seeing him awake and looking around tonight. He's felt so crappy for the last two days that all he's done is sleep. While that's nice for cuddles and naps, I was really concerned about him because you could just tell he wasn't feeling well. So seeing him perk up this evening really made me relax a little. I'll still call to check on him before I go to bed and see if there's any updates on the rest of his test results.
Th biggest frustration I have with this whole thing is not just that he has all of these lines back in him again, but that he's stopped getting food. I need him to eat so he can come home and this is definitely setting him back. I suppose I can hold out hope that he'll be ready for the bottle when they let him eat again, but it's not very likely. And I'm supposed to go back to work in a few weeks :/ that's going to absolutely kill me, but it is what it is. I just hope he pulls it together so I don't have to worry about it.
In other good news, Sara is on the mend too. The doctors hope to have her moved out of ICU tomorrow so she can see her baby again. And Ariella should be discharged tomorrow, so she'll likely get moved to Sara's room anyway. I'm so happy that she's doing better! There has been so much going on that I haven't been able to see her, but I plan on getting there in the next day or so to see her for myself and squeeze Ariella.
In another month, everyone is going to be home and we're all going to look at this as a bad dream. Except we have pictures as evidence that it happened.
Tomorrow I'll get more information abut Jaxson's condition and how he's doing. Hopefully his blood count is back up and his infection is gone. Once that test comes back negative, he has to be on antibiotics for 10 more days. Which means that's how long the PICC will stay in, although that doesn't mean he won't eat I think. I'm also hoping that I'll have the results from the rest of his cultures in the morning so we an rest easy knowing what we're dealing with. Praying for good news tomorrow for baby Jaxson!
He still looked really pale when I got there this morning and after talking to the doctor, I learned that his blood count was down to 8.4. It still wasn't low enough for them to do a transfusion unless he started showing signs that he needed it. The doctor was really surprised that the infection spread to his blood and she told me that if he got any sicker they would move him back up to the NICU where he would have his own nurse. They decided to stop feeding him and go back to giving him nutrition through his PICC line. So his feeding tube is gone, which is nice in a way. I'm sure it feels better to not have that in.
I left for a few hours in the afternoon to come home and see my boys and then went back this evening for about an hour. When I went back, he still looked pretty pale, but he was awake and alert. I held him the whole time I was there and all he wanted was to look at mommy. I also found out when I went back that they got his respiratory tests back and everything was negative, so once they get approval in the morning, we can lose the gear! I'm really hoping that happens because it really sucks to not be able to touch him.
Jaxson is showing us what a true fighter he is. He knows that if he gets sicker he's moving back up to the other floor and I really think he likes where he is now. The Ono sign that the antibiotics are bothering him is he's got a ittle diarrhea. He hasn't thrown up and his vitals have remained stable. His breathing and heart rate are a little higher than what he usually runs, but it's nothing dangerous.
I really enjoyed seeing him awake and looking around tonight. He's felt so crappy for the last two days that all he's done is sleep. While that's nice for cuddles and naps, I was really concerned about him because you could just tell he wasn't feeling well. So seeing him perk up this evening really made me relax a little. I'll still call to check on him before I go to bed and see if there's any updates on the rest of his test results.
Th biggest frustration I have with this whole thing is not just that he has all of these lines back in him again, but that he's stopped getting food. I need him to eat so he can come home and this is definitely setting him back. I suppose I can hold out hope that he'll be ready for the bottle when they let him eat again, but it's not very likely. And I'm supposed to go back to work in a few weeks :/ that's going to absolutely kill me, but it is what it is. I just hope he pulls it together so I don't have to worry about it.
In other good news, Sara is on the mend too. The doctors hope to have her moved out of ICU tomorrow so she can see her baby again. And Ariella should be discharged tomorrow, so she'll likely get moved to Sara's room anyway. I'm so happy that she's doing better! There has been so much going on that I haven't been able to see her, but I plan on getting there in the next day or so to see her for myself and squeeze Ariella.
In another month, everyone is going to be home and we're all going to look at this as a bad dream. Except we have pictures as evidence that it happened.
Tomorrow I'll get more information abut Jaxson's condition and how he's doing. Hopefully his blood count is back up and his infection is gone. Once that test comes back negative, he has to be on antibiotics for 10 more days. Which means that's how long the PICC will stay in, although that doesn't mean he won't eat I think. I'm also hoping that I'll have the results from the rest of his cultures in the morning so we an rest easy knowing what we're dealing with. Praying for good news tomorrow for baby Jaxson!
Tuesday, July 24, 2012
Semi-Update, PICC Back In
As you can see from the earlier post, today was a very long day. I walked into a mess at 9:15 this morning and didn't get home until almost 9pm tonight. Jaxson spiked a fever over 102 and his heart rate jumped into the 200s. They did bloodwork, a urinalysis, a chest X-ray and a lumbar puncture. It took three hours, several blown veins and the IV team to finally get an IV in the top of Jaxson's foot. Not the idea spot for it and it will likely come out soon. Because they had so much trouble with that and the likelihood that his vein blows again or the IV doesn't last is so great, they decided to put his PICC line back in. And they upped his oxygen to 0.5 again. It's one less thing for his little body to stress about while he goes through all of these other things.
If you don't know the difference, you know an IV is a short needle that goes right into your vein and is not ideal for long term use in babies because they can't control their movements. A PICC line is a long line that kind of looks like floss. It runs up the arm or through the groin and goes straight to the heart. They actually have to measure the line before they put it in and after it comes out to make sure that nothing breaks off inside the body. It's very rare that that would happen, but it is still something they have to do. The PICC is much more ideal for long term use in babies because of its strength and flexibility. I hated to sign the consent for the PICC because I want the lines out of him, not in. But it was best for him, so it's back in.
We had a few results before I left tonight, but I'll know more in the morning after I talk to the doctor. The urinalysis showed that his white cell count was in the 200s, which means he has a urinary tract infection. They think this is the culprit of his fever, but babies tend to not contain infection to one place so they still did everything else. The chest X-ray showed mild swelling in his lungs, which they are not concerned about right now. I'll ask about that in the morning. His blood count was 8.7, and it should be 10. So it's causing him to be tired and pale. They think it's low because they took blood from him, and I think they're going to check it again tomorrow. If he shows any signs of it being low or if it drops, he'll have to have a transfusion. Which is why the IV is still in his foot. A transfusion can't go in the PICC, it has to go in an IV. So my hope is that I walk in to no IV in the morning!
I'm praying that Jaxson just has a urinary tract infection and nothing else. Those are tolerable and easily treated with antibiotics. Then I think we'd just have to get urology involved to decide if anything is to be done about his extra ureter.
Throughout the day I checked in on Facebook and revived countless comments and messages from friends and family. I also had several visitors today so that I wasn't alone at the hospital. The she amount of texts, messages and comments is truly overwhelming and I can't thank everyone enough for reaching out. Even if I haven't responded to you (patience, I'll get there!), please know that I received your note and I appreciate it more than you know.
On a brighter note, after a very rough start to the week of Sara, they've discovered that she had a bleeding ulcer. She had an endoscopy tonight and they found a bleeding ulcer that exposed an artery. They clipped off the artery and are pretty sure that should fix the problem. They are hopeful that they'll be able to start her blood thinners back up tomorrow afternoon. Thank God for small favors!
And now it's time to move my other monster from my bed to his so I can get some rest myself.
If you don't know the difference, you know an IV is a short needle that goes right into your vein and is not ideal for long term use in babies because they can't control their movements. A PICC line is a long line that kind of looks like floss. It runs up the arm or through the groin and goes straight to the heart. They actually have to measure the line before they put it in and after it comes out to make sure that nothing breaks off inside the body. It's very rare that that would happen, but it is still something they have to do. The PICC is much more ideal for long term use in babies because of its strength and flexibility. I hated to sign the consent for the PICC because I want the lines out of him, not in. But it was best for him, so it's back in.
We had a few results before I left tonight, but I'll know more in the morning after I talk to the doctor. The urinalysis showed that his white cell count was in the 200s, which means he has a urinary tract infection. They think this is the culprit of his fever, but babies tend to not contain infection to one place so they still did everything else. The chest X-ray showed mild swelling in his lungs, which they are not concerned about right now. I'll ask about that in the morning. His blood count was 8.7, and it should be 10. So it's causing him to be tired and pale. They think it's low because they took blood from him, and I think they're going to check it again tomorrow. If he shows any signs of it being low or if it drops, he'll have to have a transfusion. Which is why the IV is still in his foot. A transfusion can't go in the PICC, it has to go in an IV. So my hope is that I walk in to no IV in the morning!
I'm praying that Jaxson just has a urinary tract infection and nothing else. Those are tolerable and easily treated with antibiotics. Then I think we'd just have to get urology involved to decide if anything is to be done about his extra ureter.
Throughout the day I checked in on Facebook and revived countless comments and messages from friends and family. I also had several visitors today so that I wasn't alone at the hospital. The she amount of texts, messages and comments is truly overwhelming and I can't thank everyone enough for reaching out. Even if I haven't responded to you (patience, I'll get there!), please know that I received your note and I appreciate it more than you know.
On a brighter note, after a very rough start to the week of Sara, they've discovered that she had a bleeding ulcer. She had an endoscopy tonight and they found a bleeding ulcer that exposed an artery. They clipped off the artery and are pretty sure that should fix the problem. They are hopeful that they'll be able to start her blood thinners back up tomorrow afternoon. Thank God for small favors!
And now it's time to move my other monster from my bed to his so I can get some rest myself.
Complications
I should have listened to Jayson last night. He told me to come to the hospital because I was missing Jaxson and I told him I would spend the night if I left right then. He told me it was fine, but I decided I wanted to sleep in my bed. I should have come. Jaxson's heart rate went up into the 200s this morning which caused them to check his temperature. It was over 102.
So when I walked in over two hours ago, there were three nurses working on him. They've blown several veins trying to get an IV in and trying to take blood for tests. The IV still isn't in, even after calling the IV team. They got his urine from a catheter for his urinalysis, and they've ordered a chest X-ray to look at his lungs. They'll also be doing a lumbar puncture to check for meningitis. They had to get clearance from neurosurgery for the lumbar puncture because of his spine issues. Neurosurgery said that they could do it if it was absolutely necessary and only with the aid of ultrasound. S at some point today they'll be taking Jaxson down to radiology to do that. The X-ray team will come to his room for that part.
For the next 48 hours (at least) we have to wear gowns, masks and gloves while we're in his room. So I can still hold him but I can't touch him or kiss him. I can't even be in his room while they're doing all of this stuff either. I know they're doing what's best for him, but to hear him cry and not be able to comfort him is killing me. And if he gets any sicker they're going to move him back upstairs where he'll get more attention.
Never again will I ignore my instincts. My heart was telling me to come check on my baby and I didn't do it. I could shoot myself in the foot.
Jayson is the most supportive husband a woman could ask for. He took Jeffrey to my parents house and is on his way back here with food. My dad is amazing for watching Jeffrey while he's got Lexi and dealing with the emotions of having a daughter in the ICU. I am so lucky to have such an amazing family. And friends who offer to watch Jeffrey if I need them to or offer to come sit with me so I'm not alone.
Right now I just need them to be done so I can comfort my baby. Hopefully they're close.
So when I walked in over two hours ago, there were three nurses working on him. They've blown several veins trying to get an IV in and trying to take blood for tests. The IV still isn't in, even after calling the IV team. They got his urine from a catheter for his urinalysis, and they've ordered a chest X-ray to look at his lungs. They'll also be doing a lumbar puncture to check for meningitis. They had to get clearance from neurosurgery for the lumbar puncture because of his spine issues. Neurosurgery said that they could do it if it was absolutely necessary and only with the aid of ultrasound. S at some point today they'll be taking Jaxson down to radiology to do that. The X-ray team will come to his room for that part.
For the next 48 hours (at least) we have to wear gowns, masks and gloves while we're in his room. So I can still hold him but I can't touch him or kiss him. I can't even be in his room while they're doing all of this stuff either. I know they're doing what's best for him, but to hear him cry and not be able to comfort him is killing me. And if he gets any sicker they're going to move him back upstairs where he'll get more attention.
Never again will I ignore my instincts. My heart was telling me to come check on my baby and I didn't do it. I could shoot myself in the foot.
Jayson is the most supportive husband a woman could ask for. He took Jeffrey to my parents house and is on his way back here with food. My dad is amazing for watching Jeffrey while he's got Lexi and dealing with the emotions of having a daughter in the ICU. I am so lucky to have such an amazing family. And friends who offer to watch Jeffrey if I need them to or offer to come sit with me so I'm not alone.
Right now I just need them to be done so I can comfort my baby. Hopefully they're close.
Monday, July 23, 2012
Missing a Piece of Me
I didn't get to go see Sara tonight. There was so much going on up there and she is on so much medication right now that I didn't want to bring Jeffrey. So that gave me a chance to chill out and begin to process some things. I also gave me a chance to clean a little, although not much since I'm still dealing with incision pain from my surgery.
Jeffrey must have sensed I was having a rough night because he pretty much chilled out. I had to yell at him a couple of times when he wasn't listening, but he's three so that's to be expected. He mostly sat with me on the couch, sat on my lap, or layed in bed with me. And that's when I realized that I really miss Jaxson. As I said in my earlier blog, I won't know more until tomorrow, but I know it's going to be at least two more weeks before my baby comes home. And likely it will be longer.
It's been almost three weeks and I only get to see him for a few hours a day. Don't get me wrong, I'm glad Jayson and I have this schedule worked out. It's been really helpful for Jeffrey and it makes me feel like I'm doing right by both of my kids. But at the same time, Jaxson just needs me more. I would stay at the hospital 24/7 if I didn't have Jeffrey. But I do, so I'm limited.
And all of this got me thinking about the day he was born and comparing it to the day Jeffrey was born. I didn't get to hold either of m kids right after they were born. With Jeffrey, I was numb from the neck down for an hour after my surgery. With Jaxson, they took him away to be stabilized and ready him for transfer. I didn't get that initial bond where they put your baby on your chest. At least with Jeffrey, I got to do that once I could move. And I got to nurse him that night too.
Jaxson has been removed from me from the start and it's really starting to wear on me. It's hard enough adding a child to a home that already has a child and trying to balance how life will work. Now throw in that second child not being at home and having to split your time between two places AND two kids. It's frustrating and heartbreaking. When I'm at the hospital, I feel like I should be home with Jeffrey. When I'm home, I feel like I should be with Jaxson. In reality, I should be with both of them at the same time. All the time. At my house, with my stuff, taking care of them at the same time. Instead, I'm facing the very real possibility that Jaxson will still be at Children's when I go back to work at the end of August.
And what about Jayson? I haven't gotten to see him for longer than five minutes at a time in weeks. I'd love to have some one on one time with my husband. Our relationship is so strong that I'm not concerned about the toll this is taking, but I still miss him. And we live together! But I need him to work and make money to help with our bills, so that's what he does. But it would sure be nice for he and I to get some alone time, even if it just means watching a movie on the couch.
If I could ask one thing from everyone that reads this, it would be to please pray that Jaxson gets to come home sooner rather than later. He needs to be able to breathe on his own and eat from a bottle before they'll let him leave. But I know that one he gets here everything will calm down so much, and we'll be able to manage things so much better. I just miss Jaxson so much! I want to be the one that picks him up whenever he cries, the one to feed him every three hours even though it means less sleep, the one to change his diapers whenever he needs it, the one who makes all of his little worries disappear at a touch. I need him probably more than he needs me right now. It's like a little piece of me is missing without him here. And I can't get it back until he comes home.
So, when you pray next time, please think of baby Jaxson. Whatever road lies ahead for him is nothing compared to how his family feels right now. We need him home!
Jeffrey must have sensed I was having a rough night because he pretty much chilled out. I had to yell at him a couple of times when he wasn't listening, but he's three so that's to be expected. He mostly sat with me on the couch, sat on my lap, or layed in bed with me. And that's when I realized that I really miss Jaxson. As I said in my earlier blog, I won't know more until tomorrow, but I know it's going to be at least two more weeks before my baby comes home. And likely it will be longer.
It's been almost three weeks and I only get to see him for a few hours a day. Don't get me wrong, I'm glad Jayson and I have this schedule worked out. It's been really helpful for Jeffrey and it makes me feel like I'm doing right by both of my kids. But at the same time, Jaxson just needs me more. I would stay at the hospital 24/7 if I didn't have Jeffrey. But I do, so I'm limited.
And all of this got me thinking about the day he was born and comparing it to the day Jeffrey was born. I didn't get to hold either of m kids right after they were born. With Jeffrey, I was numb from the neck down for an hour after my surgery. With Jaxson, they took him away to be stabilized and ready him for transfer. I didn't get that initial bond where they put your baby on your chest. At least with Jeffrey, I got to do that once I could move. And I got to nurse him that night too.
Jaxson has been removed from me from the start and it's really starting to wear on me. It's hard enough adding a child to a home that already has a child and trying to balance how life will work. Now throw in that second child not being at home and having to split your time between two places AND two kids. It's frustrating and heartbreaking. When I'm at the hospital, I feel like I should be home with Jeffrey. When I'm home, I feel like I should be with Jaxson. In reality, I should be with both of them at the same time. All the time. At my house, with my stuff, taking care of them at the same time. Instead, I'm facing the very real possibility that Jaxson will still be at Children's when I go back to work at the end of August.
And what about Jayson? I haven't gotten to see him for longer than five minutes at a time in weeks. I'd love to have some one on one time with my husband. Our relationship is so strong that I'm not concerned about the toll this is taking, but I still miss him. And we live together! But I need him to work and make money to help with our bills, so that's what he does. But it would sure be nice for he and I to get some alone time, even if it just means watching a movie on the couch.
If I could ask one thing from everyone that reads this, it would be to please pray that Jaxson gets to come home sooner rather than later. He needs to be able to breathe on his own and eat from a bottle before they'll let him leave. But I know that one he gets here everything will calm down so much, and we'll be able to manage things so much better. I just miss Jaxson so much! I want to be the one that picks him up whenever he cries, the one to feed him every three hours even though it means less sleep, the one to change his diapers whenever he needs it, the one who makes all of his little worries disappear at a touch. I need him probably more than he needs me right now. It's like a little piece of me is missing without him here. And I can't get it back until he comes home.
So, when you pray next time, please think of baby Jaxson. Whatever road lies ahead for him is nothing compared to how his family feels right now. We need him home!
Whole Family Update
Today's post is going to be a little different. I know this blog is supposed to be about Jaxson and how he's doing, but I have so many other things going on that I just need an outlet today. Before I get into the rest, Jaxson is doing fine. There's nothing new to report today, but I may have some changes to share tomorrow. He has a new neonatologist on his new floor, so she's going to get all of his information together and come up with a plan to get Jaxson home. We're still looking at AT LEAST two more weeks, but I'll know more tomorrow.
So I'm going to start at the beginning. And this dates back a few weeks, so bear with me. On June 28th, Sam was in a car accident. She was hit by a double-trailer semi while merging from one highway to another. Her car is basically totaled and she has concussion number 6 along with post-concussion syndrome. She's been ordered to drop her class, no coaching, limited driving, no working out, and extremely limited activity in general. Now, if you know my sister, you know that this is like putting me on bedrest. It's near the end of the world.
Mind you, this happened 6 days before Jaxson was born. And this is where it started. It comes in three's right? Well if you've been reading you already know part 2: Jaxson and his health issues on top of deciding to come a bit early. Nothing to add to part 2 that you don't already know.
Part 3: Sara. She was pregnant at the same time as me. She had it a little tougher than I did, at least physically. She got a kidne infection early in her pregnancy and she just couldn't kick it. So she was on antibiotics and pain meds for a long time. Plus, she had to take Lovenox shots for her clotting disorder and Progesterone to make sure she didn't have the baby early like she did with Lexi. She was uncomfortable, but handling it like a champ. Then, about a week after Jaxson was born, Sara was rushed to the ER with clots. In her arteries, not her veins. You've heard me say before that my family is notorious for stumping doctors, a la Jaxson, and this is another example. S they get some things under control and induce her so that she can be treated properly. Welcome to the world Ariella! Things start to look up, Sara is improving. Then Ariella goes to the NICU due to withdrawals from the pain meds the doctors had Sara on. Okay, it sucks but okay. There's talk over this past weekend of letting Sara come home today. Awesome! Except Sara's body has other ideas. Her hemoglobin plummets and they move her back to ICU yesterday and give her a blood transfusion. Today, her blood pressure plummets. It seems to be stabilizing now, but the doctors have no idea what's going on with her. They are clearly using trial and error to figure it out, which is so frustrating.
My whole family is coming apart. Thank God we're all so close so we can lean on each other, but there's so much going on with each person that it's impossible to lean on someone for everything. For instance, I got the news about Sara's blood pressure while I was at the hospital visiting Jaxson. I have to leave so Jayson can get to work and try to figure out how to get up to see my sister later. I go to give Jaxson one last cuddle and he just drops his head on my chest and conks out. I thought I was going to lose it. My little boy needs me and I had to force myself to put him down and come home because m other little boy needs me. And I don't even have time to process my feelings or think about how Jaxson is really doing today because I'm so worried about Sara. And my parents. And Lexi. And Sam.
Everything is so chaotic right now. I only have time to update this because Jeffrey is down for his nap and Jayson is at work. So all is quiet at my house and I have 30 seconds to think about me. My head hurts and my heart hurts. I feel like I'm being pulled in 5000 different directions and I don't know which is the right one. And I'm exhausted. Did I mention that I'm pumping every 3 hours for Jaxson? I don't get up at night, but I'm getting a maximum of 6 hours of sleep at once, and that's because my body wakes me up. On top of not eating right because until last night there was no food in our house. Every movement is like a chore. I'm sure my iron is low and I'm positive I'm not getting enough calories. I do make sure to stay hydrated, though. Water is easy to come by and usually doesn't cost anything.
I suppose that's it for today. I can't wrap my head around forming a coherent thought, so I need to take a power nap before Jeffrey wakes up. Hopefully that will wake me up too.
So I'm going to start at the beginning. And this dates back a few weeks, so bear with me. On June 28th, Sam was in a car accident. She was hit by a double-trailer semi while merging from one highway to another. Her car is basically totaled and she has concussion number 6 along with post-concussion syndrome. She's been ordered to drop her class, no coaching, limited driving, no working out, and extremely limited activity in general. Now, if you know my sister, you know that this is like putting me on bedrest. It's near the end of the world.
Mind you, this happened 6 days before Jaxson was born. And this is where it started. It comes in three's right? Well if you've been reading you already know part 2: Jaxson and his health issues on top of deciding to come a bit early. Nothing to add to part 2 that you don't already know.
Part 3: Sara. She was pregnant at the same time as me. She had it a little tougher than I did, at least physically. She got a kidne infection early in her pregnancy and she just couldn't kick it. So she was on antibiotics and pain meds for a long time. Plus, she had to take Lovenox shots for her clotting disorder and Progesterone to make sure she didn't have the baby early like she did with Lexi. She was uncomfortable, but handling it like a champ. Then, about a week after Jaxson was born, Sara was rushed to the ER with clots. In her arteries, not her veins. You've heard me say before that my family is notorious for stumping doctors, a la Jaxson, and this is another example. S they get some things under control and induce her so that she can be treated properly. Welcome to the world Ariella! Things start to look up, Sara is improving. Then Ariella goes to the NICU due to withdrawals from the pain meds the doctors had Sara on. Okay, it sucks but okay. There's talk over this past weekend of letting Sara come home today. Awesome! Except Sara's body has other ideas. Her hemoglobin plummets and they move her back to ICU yesterday and give her a blood transfusion. Today, her blood pressure plummets. It seems to be stabilizing now, but the doctors have no idea what's going on with her. They are clearly using trial and error to figure it out, which is so frustrating.
My whole family is coming apart. Thank God we're all so close so we can lean on each other, but there's so much going on with each person that it's impossible to lean on someone for everything. For instance, I got the news about Sara's blood pressure while I was at the hospital visiting Jaxson. I have to leave so Jayson can get to work and try to figure out how to get up to see my sister later. I go to give Jaxson one last cuddle and he just drops his head on my chest and conks out. I thought I was going to lose it. My little boy needs me and I had to force myself to put him down and come home because m other little boy needs me. And I don't even have time to process my feelings or think about how Jaxson is really doing today because I'm so worried about Sara. And my parents. And Lexi. And Sam.
Everything is so chaotic right now. I only have time to update this because Jeffrey is down for his nap and Jayson is at work. So all is quiet at my house and I have 30 seconds to think about me. My head hurts and my heart hurts. I feel like I'm being pulled in 5000 different directions and I don't know which is the right one. And I'm exhausted. Did I mention that I'm pumping every 3 hours for Jaxson? I don't get up at night, but I'm getting a maximum of 6 hours of sleep at once, and that's because my body wakes me up. On top of not eating right because until last night there was no food in our house. Every movement is like a chore. I'm sure my iron is low and I'm positive I'm not getting enough calories. I do make sure to stay hydrated, though. Water is easy to come by and usually doesn't cost anything.
I suppose that's it for today. I can't wrap my head around forming a coherent thought, so I need to take a power nap before Jeffrey wakes up. Hopefully that will wake me up too.
Saturday, July 21, 2012
Movin' Up!
This one will be pretty quick because there's really not much to update. My favorite part of the day was when Jeffrey asked to hold his baby brother. It was the first time he's shown interest, so I let him. I got some cute pictures for them to see later in life. Jeffrey is going to be an absolutely amazing big brother to this little boy. I am truly blessed with Jeffrey. How many three year olds will sit in the NICU for an hour and be content with it? Yeah, I'm spoiled!
Jaxson is eating anywhere from 0-20mL from a bottle when he is presented with it! He even took a few mL's for me tonight :) Not much, but I was happy to see him trying and taking some in.
Plus, we're in a much more comfortable room now! Jaxson no longer needs the attention he did before, so they moved him to a different floor. I gotta say, seeing Children's number pop up on my phone when they called to tell me was not fun. I never knew so many thoughts could go through my head in the 3 seconds it took for me to put the phone to my ear! But they were just letting me know that he was being moved to the second floor. So he shares a nurse with a few other babies because he doesn't need to have someone hovering over him 24/7, which means he's making progress.
The best part about this move is that he has his own room! It was so much easier to have Jeffrey there and be able to spend some time with both of my boys tonight. There's a chair and a couch and privacy for me to pump beside his bed instead of going into another room. There's a TV with a DVD/VCR player and I actually get a cell signal in there so I can handle business while I'm at the hospital. I can even shut the door if I need it to be quiet for whatever reason. I'm actually looking forward to taking a nap on the couch with a baby on my chest and a toddler by my side :) I won't have to feel quite so bad about spending time at the hospital if I can have Jeffrey there with me.
Jaxson having his own room is a huge step. And I think it will really help his respiration rate. I've been praying for something like this because Jax reacts to every stressor in a room. Anytime another baby would cry, monitors would go off or alarms would sound, Jaxson's breathing went through the roof. I can't wait to see how quickly he improves his breathing now that the bulk of those stressors have been removed!
Other than that, there's nothing new to report on Mr. Jaxson. His mom might have a nervous breakdown before this is all over, but he's doing great. So much better than anyone expected and for that I am extremely grateful. I think we're still looking at it being weeks before he comes home, but today I am able to take a step back and be thankful for the baby steps he has taken. And for the things that could have been that would have made this so much worse that aren't happening. Now I just want to focus on bringing him home as soon as he's ready, and helping him however I can to get that done. We're all ready!
Jaxson is eating anywhere from 0-20mL from a bottle when he is presented with it! He even took a few mL's for me tonight :) Not much, but I was happy to see him trying and taking some in.
Plus, we're in a much more comfortable room now! Jaxson no longer needs the attention he did before, so they moved him to a different floor. I gotta say, seeing Children's number pop up on my phone when they called to tell me was not fun. I never knew so many thoughts could go through my head in the 3 seconds it took for me to put the phone to my ear! But they were just letting me know that he was being moved to the second floor. So he shares a nurse with a few other babies because he doesn't need to have someone hovering over him 24/7, which means he's making progress.
The best part about this move is that he has his own room! It was so much easier to have Jeffrey there and be able to spend some time with both of my boys tonight. There's a chair and a couch and privacy for me to pump beside his bed instead of going into another room. There's a TV with a DVD/VCR player and I actually get a cell signal in there so I can handle business while I'm at the hospital. I can even shut the door if I need it to be quiet for whatever reason. I'm actually looking forward to taking a nap on the couch with a baby on my chest and a toddler by my side :) I won't have to feel quite so bad about spending time at the hospital if I can have Jeffrey there with me.
Jaxson having his own room is a huge step. And I think it will really help his respiration rate. I've been praying for something like this because Jax reacts to every stressor in a room. Anytime another baby would cry, monitors would go off or alarms would sound, Jaxson's breathing went through the roof. I can't wait to see how quickly he improves his breathing now that the bulk of those stressors have been removed!
Other than that, there's nothing new to report on Mr. Jaxson. His mom might have a nervous breakdown before this is all over, but he's doing great. So much better than anyone expected and for that I am extremely grateful. I think we're still looking at it being weeks before he comes home, but today I am able to take a step back and be thankful for the baby steps he has taken. And for the things that could have been that would have made this so much worse that aren't happening. Now I just want to focus on bringing him home as soon as he's ready, and helping him however I can to get that done. We're all ready!
Friday, July 20, 2012
VCUG Results
When I got to the hospital this morning, Jaxson was in the hallway being taken somewhere. I sort of flipped out because I forgot about his test, and then the nurses reminded me that he was going for his VCUG to check his kidney. Thankfully, the doctor came by right before I left and told me that everything came back normal! For once, we got good news. He does not have any reflux issues with having two ureters, which means he's not at any additional risk for urinary tract or kidney infections. I think that urology and nephrology are still going to look at it to decide if anything will ever need done about it, but I can tell you from this whole experience that if anything is going to be done, it won't be until there's a problem to fix. Since there isn't a problem right now, I'm sure they'll just leave it alone.
In other good news, Jaxson took 20mL's twice and 13mL's once from a bottle during the night! That's huge for my little guy, considering he had taken 10 at most before and averaged closer to 5. I also talked to OT about his feeding schedule because I was not comfortable with them trying to feed him a bottle at every feed. He's having a hard enough time as it is, and I felt that it would stress him out too much to have that happen. My OT just kind of smiled and agreed with me. She had them change his schedule to four times a day and only when he shows interest in eating. So they'll look for feeding signs like eating his hands, being wide awake, sucking on his pacifier, and being cooperative during his care sessions. That made me feel much better and I think he'll improve faster and take more food if he isn't forced to take a bottle all the time.
So Jaxson had this great day and I got to stay for a few extra hours thanks to my sweet mother-in-law who watched Jeffrey for us. I was in a pretty good mood and had a good time just chilling out with Jeffrey. Then reality sunk in and I pulled up my bank account to see what bills I needed to pay, only to discover that my disability company totally messed up my paycheck. I should get at least 5 weeks at full pay and the rest at 60%, but it looks like I only got 60% this time for some reason. That triggered another break down and phone call to my amazing mom who calmed me down and told me that we would figure something out. I can always rely on my family to help me out Ina pinch and I'm so lucky for that. This was one stressor that I did not need!
Now I'm just getting Jeffrey to bed, with me as seems to be the MO lately, and trying to keep it together. Jeffrey is such a great little boy. He knows mommy is having a rough night and he's being so good. Well, as good as a three year old can be haha. He's trying at times, but he usually knows when it's time to listen and not push buttons. I am extremely blessed to have such an intuitive and perceptive little boy.
I'm blessed in so many ways. Sometimes it's hard to see through all the muck, and it doesn't mean that I will be happy all the time, but it certainly makes things easier to handle when I remember that I have so much support. I just have to learn to lean on people and use the support that I have instead of trying to do it all by myself. So please, feel free to send me friendly reminders when I start to sound like a crybaby! Even if I don't lean on you, it will remind me that you are there and sometimes that's all I need.
In other good news, Jaxson took 20mL's twice and 13mL's once from a bottle during the night! That's huge for my little guy, considering he had taken 10 at most before and averaged closer to 5. I also talked to OT about his feeding schedule because I was not comfortable with them trying to feed him a bottle at every feed. He's having a hard enough time as it is, and I felt that it would stress him out too much to have that happen. My OT just kind of smiled and agreed with me. She had them change his schedule to four times a day and only when he shows interest in eating. So they'll look for feeding signs like eating his hands, being wide awake, sucking on his pacifier, and being cooperative during his care sessions. That made me feel much better and I think he'll improve faster and take more food if he isn't forced to take a bottle all the time.
So Jaxson had this great day and I got to stay for a few extra hours thanks to my sweet mother-in-law who watched Jeffrey for us. I was in a pretty good mood and had a good time just chilling out with Jeffrey. Then reality sunk in and I pulled up my bank account to see what bills I needed to pay, only to discover that my disability company totally messed up my paycheck. I should get at least 5 weeks at full pay and the rest at 60%, but it looks like I only got 60% this time for some reason. That triggered another break down and phone call to my amazing mom who calmed me down and told me that we would figure something out. I can always rely on my family to help me out Ina pinch and I'm so lucky for that. This was one stressor that I did not need!
Now I'm just getting Jeffrey to bed, with me as seems to be the MO lately, and trying to keep it together. Jeffrey is such a great little boy. He knows mommy is having a rough night and he's being so good. Well, as good as a three year old can be haha. He's trying at times, but he usually knows when it's time to listen and not push buttons. I am extremely blessed to have such an intuitive and perceptive little boy.
I'm blessed in so many ways. Sometimes it's hard to see through all the muck, and it doesn't mean that I will be happy all the time, but it certainly makes things easier to handle when I remember that I have so much support. I just have to learn to lean on people and use the support that I have instead of trying to do it all by myself. So please, feel free to send me friendly reminders when I start to sound like a crybaby! Even if I don't lean on you, it will remind me that you are there and sometimes that's all I need.
Thursday, July 19, 2012
More Tests, More Potential Problems
I think I should have had my tubes tied when I had my C Section. I am almost certainly never having another child after this one! Not just because of all of his health issues that are going to require lots of attention, but because when you have a child with birth defects, the chances of having another with birth defects goes up. And if the doctors come back and tell me there's anything else going on with this baby, someone is going to have to check me in to the looney bin.
So today I got to speak with the doctors during rounds again. They decided that since Jaxson will not be undergoing any major surgeries while he's there, they are not going to test for prothrombin gene mutation at this time. Jaxson will have a consult with the hematology department after he's discharged and before he has his craniosynostosis (skull) surgery. Which is absolutely fine with me, I was more concerned that they knew about it in advance. That test only takes a day or two to come back, so I'm not concerned that they aren't doing it now.
That was the easy part. Then they told me that genetics wants to test for something called Crouzon Syndrome. They're testing for it because of the premature sutures of his skull bones combined with his cleft palate and other things. He may not have it, it could be that he just has these defects, but they're testing for it just to be sure. They're looking for the "why" of why he has all of these problems, and that's the most common that matches his symptoms. If it comes back negative, they might look for something else or just say that there's no genetic disorder. The syndrome is basically a protein deficiency in his bones that could cause other problems during growth, but I haven't had much time to look further into it yet. I'm not digging too much until I know for sure if he has it or not.
Then they reminded me that he has his follow up renal (kidney) ultrasound today, which they did this morning. I got a phone call with the results. The cyst that was on his right kidney either wasn't really there before or it resolved itself because it's gone. Which is great news. But his left kidney has a problem: two ureters instead of one. The ureter is the tube where the urine travels from the kidney to the bladder. When there are two, there's a chance that some of that can go back up into the kidney, which raises the potential for kidney and urinary tract infections. He'll undergo a test tomorrow to see if that is happening or not and if it is, he will just come home on an antibiotic. I'll find out in the morning if there's a long-term issue that will have to be dealt with by urology or if it's just something he has to deal with.
The final thing they decided today was to try and take him off of his oxygen. After his noon feeding, they pulled the prongs out of his nose to see how he would do. It didn't last long. His oxygen saturation dropped into the 70s (they like it over 90), so he's back on the 0.1 liter until they think he's ready to try again. The doctor said that there could be an obstruction in his airway causing him to have trouble breathing. They really don't think it's a development issue with his lungs because he wasn't that early. We have to get the ENT team involved to check that out and if there is an obstruction we need to find out where it is and how big to determine if anything is to be done about it or not.
So in good news, Jaxson has been presented with a bottle a lot more often and is starting to eat on a more regular basis. It's not a lot, but as long as he's trying I'm good with that. They're also fortifying my milk with a tiny bit of powdered formula and iron to give him more calories. The result? He's up an ounce over yesterday to 6 lbs, 2.2 oz. hopefully he continues on that trend and keeps getting stronger and eating more on his own.
I pretty much just shake my head when they tell me things now. The thing is, nothing that he has going on is life threatening or needs to be dealt with immediately. Which is great, but the next 2 years are going to play hell on my nerves and probably cause me to go gray. I'm glad that Jaxson's issues are fixable, and I'm really happy that he didn't have to have heart surgery right away like initially anticipated. I just wish that God would quit throwing curve balls at me. Every time I think I have a handle on the situation, something else comes up. So now I just shrug, shake my head and try not to laugh. Because what else can I do?
So today I got to speak with the doctors during rounds again. They decided that since Jaxson will not be undergoing any major surgeries while he's there, they are not going to test for prothrombin gene mutation at this time. Jaxson will have a consult with the hematology department after he's discharged and before he has his craniosynostosis (skull) surgery. Which is absolutely fine with me, I was more concerned that they knew about it in advance. That test only takes a day or two to come back, so I'm not concerned that they aren't doing it now.
That was the easy part. Then they told me that genetics wants to test for something called Crouzon Syndrome. They're testing for it because of the premature sutures of his skull bones combined with his cleft palate and other things. He may not have it, it could be that he just has these defects, but they're testing for it just to be sure. They're looking for the "why" of why he has all of these problems, and that's the most common that matches his symptoms. If it comes back negative, they might look for something else or just say that there's no genetic disorder. The syndrome is basically a protein deficiency in his bones that could cause other problems during growth, but I haven't had much time to look further into it yet. I'm not digging too much until I know for sure if he has it or not.
Then they reminded me that he has his follow up renal (kidney) ultrasound today, which they did this morning. I got a phone call with the results. The cyst that was on his right kidney either wasn't really there before or it resolved itself because it's gone. Which is great news. But his left kidney has a problem: two ureters instead of one. The ureter is the tube where the urine travels from the kidney to the bladder. When there are two, there's a chance that some of that can go back up into the kidney, which raises the potential for kidney and urinary tract infections. He'll undergo a test tomorrow to see if that is happening or not and if it is, he will just come home on an antibiotic. I'll find out in the morning if there's a long-term issue that will have to be dealt with by urology or if it's just something he has to deal with.
The final thing they decided today was to try and take him off of his oxygen. After his noon feeding, they pulled the prongs out of his nose to see how he would do. It didn't last long. His oxygen saturation dropped into the 70s (they like it over 90), so he's back on the 0.1 liter until they think he's ready to try again. The doctor said that there could be an obstruction in his airway causing him to have trouble breathing. They really don't think it's a development issue with his lungs because he wasn't that early. We have to get the ENT team involved to check that out and if there is an obstruction we need to find out where it is and how big to determine if anything is to be done about it or not.
So in good news, Jaxson has been presented with a bottle a lot more often and is starting to eat on a more regular basis. It's not a lot, but as long as he's trying I'm good with that. They're also fortifying my milk with a tiny bit of powdered formula and iron to give him more calories. The result? He's up an ounce over yesterday to 6 lbs, 2.2 oz. hopefully he continues on that trend and keeps getting stronger and eating more on his own.
I pretty much just shake my head when they tell me things now. The thing is, nothing that he has going on is life threatening or needs to be dealt with immediately. Which is great, but the next 2 years are going to play hell on my nerves and probably cause me to go gray. I'm glad that Jaxson's issues are fixable, and I'm really happy that he didn't have to have heart surgery right away like initially anticipated. I just wish that God would quit throwing curve balls at me. Every time I think I have a handle on the situation, something else comes up. So now I just shrug, shake my head and try not to laugh. Because what else can I do?
Wednesday, July 18, 2012
Surgery Info and Timeline
I almost deleted my last post because it sounded whiny. Almost. Then I realized that I need to keep track of how I'm feeling, so it's good to keep those posts and look back on it. I did start to feel better after I wrote it, though, which is the purpose of this blog, so that's a good thing. And I'm feeling better today than I have in a few days. Mostly because I got more information as far as Jaxson's surgeries go. And, thanks to a friend of mine, I got my hair done for free this morning. My hair has gotten darker since I've had kids, and I'm definitely blonde again :)
So, Jaxson has three surgeries planned for the next year. In the next couple of months he will undergo skull surgery. Disclaimer: some of the information from here on out may be hard to read. I met with the plastic surgeon today to discuss the process for his skull surgery. There is a team of doctors that will be aware of what is going on, and aside from the plastic surgeon, the neurosurgeon will be in the operating room when the time comes. Each doctor will be watching their own part as well as watching each other and communicating through the whole procedure. The plastic surgeon will make an incision that stretches over top of Jaxson's head from ear to ear. It will be hidden by his hair that way, which is nice. They then remove the fused bones and put them back how they go. He will need a blood transfusion and there are risks with the surgery, but not as many risks as not doing it. The good news is that I have the same blood type as Jaxson, so I could be a potential donor. We have a request in to hematology to have a consultation as well as to have him tested for my gene mutation that causes clotting. The skull surgery will take about 4.5 hours and he'll spend 4 days in the hospital recovering. The biggest complaint that most children have is that within 24 hours after the surgery, their eyes swell shut for two days. On the 4th day, when their eyes open back up, is when they get to come home. This is the surgery that worries me the most. It will be his first one and it's a pretty scary procedure given what they have to do. I fully trust the doctors that I met with today and I know Jax will be in good hands, but it's still scary as a mom to know that something like this is in her child's future.
The next surgery will be his spinal surgery. I have not met with neurosurgery yet, so I'm ot sure of anything with this one. I just know it takes place around six months of life and has become a more routine surgery over the years. I'm sure I'll have concerns about this one later, but for now it's just waiting to meet with the doctor.
Jaxson's third and (hopefully) final surgery will be to fix his cleft. This one will take place between 10 and 12 months. The doctor who does Jaxson's skull surgery will be the same doctor who fixes his cleft. They call it a partial cleft because it doesn't go all the way to his lip, and when they go in to fix it, they will just basically sew it together. Right now, the reason he's having trouble eating is because when he tries to suck, he can't create enough negative pressure. It's basically like sucking through a straw that has a hole in it. Which would severely annoy me and piss me off. So I'm trying to be patient and work with him with occupational therapy, and someone els from the cleft team is going to come and help work with me on his feeds.
Poor little Jaxson is going to have a rough first year. But you know what? It could have been worse. It could have been heart surgery number one in the books by this time with more in the future on top of everything else. So I'm trying to be grateful and thankful that he's not having to undergo more than what he has coming. It's still hard because my teeny little baby is going under the knife at such a young age and I'm having trouble wrapping my head around it. And then I consider that there's still a possibility of heart surgery in the future (although not in the first year) and it just makes me crazy to think of the hurdles Jaxson is going to have to overcome. He's got some good genes though. The Burks' and Sanderson's are nothing if not stubborn fighters, and Jaxson is already showing that he's got that fighting ability. And he's in the best place he can be right now, with some fantastic doctors helping him fight.
Today was a much better day than yesterday. And I have to realize that it's okay for me to break down. I cried on and off all day yesterday, and I'm not a crier. I'm not emotional. But this is my baby. And I am a mother, fully capable of loving my children more than life itself. And it's okay that I show them that. It's okay that I let my emotions show once in awhile. I am only human, and no matter how strong other people think I am, I know I am weak. But with the love and support of my family and friends, I can be strong. And with Jayson by my side, I can do anything.
So, Jaxson has three surgeries planned for the next year. In the next couple of months he will undergo skull surgery. Disclaimer: some of the information from here on out may be hard to read. I met with the plastic surgeon today to discuss the process for his skull surgery. There is a team of doctors that will be aware of what is going on, and aside from the plastic surgeon, the neurosurgeon will be in the operating room when the time comes. Each doctor will be watching their own part as well as watching each other and communicating through the whole procedure. The plastic surgeon will make an incision that stretches over top of Jaxson's head from ear to ear. It will be hidden by his hair that way, which is nice. They then remove the fused bones and put them back how they go. He will need a blood transfusion and there are risks with the surgery, but not as many risks as not doing it. The good news is that I have the same blood type as Jaxson, so I could be a potential donor. We have a request in to hematology to have a consultation as well as to have him tested for my gene mutation that causes clotting. The skull surgery will take about 4.5 hours and he'll spend 4 days in the hospital recovering. The biggest complaint that most children have is that within 24 hours after the surgery, their eyes swell shut for two days. On the 4th day, when their eyes open back up, is when they get to come home. This is the surgery that worries me the most. It will be his first one and it's a pretty scary procedure given what they have to do. I fully trust the doctors that I met with today and I know Jax will be in good hands, but it's still scary as a mom to know that something like this is in her child's future.
The next surgery will be his spinal surgery. I have not met with neurosurgery yet, so I'm ot sure of anything with this one. I just know it takes place around six months of life and has become a more routine surgery over the years. I'm sure I'll have concerns about this one later, but for now it's just waiting to meet with the doctor.
Jaxson's third and (hopefully) final surgery will be to fix his cleft. This one will take place between 10 and 12 months. The doctor who does Jaxson's skull surgery will be the same doctor who fixes his cleft. They call it a partial cleft because it doesn't go all the way to his lip, and when they go in to fix it, they will just basically sew it together. Right now, the reason he's having trouble eating is because when he tries to suck, he can't create enough negative pressure. It's basically like sucking through a straw that has a hole in it. Which would severely annoy me and piss me off. So I'm trying to be patient and work with him with occupational therapy, and someone els from the cleft team is going to come and help work with me on his feeds.
Poor little Jaxson is going to have a rough first year. But you know what? It could have been worse. It could have been heart surgery number one in the books by this time with more in the future on top of everything else. So I'm trying to be grateful and thankful that he's not having to undergo more than what he has coming. It's still hard because my teeny little baby is going under the knife at such a young age and I'm having trouble wrapping my head around it. And then I consider that there's still a possibility of heart surgery in the future (although not in the first year) and it just makes me crazy to think of the hurdles Jaxson is going to have to overcome. He's got some good genes though. The Burks' and Sanderson's are nothing if not stubborn fighters, and Jaxson is already showing that he's got that fighting ability. And he's in the best place he can be right now, with some fantastic doctors helping him fight.
Today was a much better day than yesterday. And I have to realize that it's okay for me to break down. I cried on and off all day yesterday, and I'm not a crier. I'm not emotional. But this is my baby. And I am a mother, fully capable of loving my children more than life itself. And it's okay that I show them that. It's okay that I let my emotions show once in awhile. I am only human, and no matter how strong other people think I am, I know I am weak. But with the love and support of my family and friends, I can be strong. And with Jayson by my side, I can do anything.
Tuesday, July 17, 2012
More Surgery
Before I get to Jaxson's update, I have to give a huge shout out to the newest addition to our family. Ariella Renee Luciana Bango was born this morning at 1:04am, weighing in at 6lbs, 4oz and 19 inches long. She's a beautiful, healthy, perfect little baby girl and I couldn't be happier for my sister!
Now back to Jaxson. The cleft team did not come down for his noon feeding today like I thought they were going to, so hopefully they'll come tomorrow. Jaxson refused to eat for me again today anyway, so it's probably not a bad thing. I also got the results of his CT scan. He does have bones fused together in his skull, so he'll have to have surgery to fix it. This will be surgery number 3 that little Jaxson will have to endure. I don't know when yet, I was a little in shock when the doctor was there that I didn't think to ask any questions. So I'm going to write down a bunch of questions and have Jayson talk to the doctors tomorrow while I get my hair done. I feel guilty about going to do that, but I'm being shoved out the door tomorrow morning so I'm going to try and enjoy it.
I feel like I'm losing my mind, that my baby is never going to get to come home. None of this is anyone's fault, it's just that things went wrong when Jayson and my genes got together. But why? I know everyone says that God won't give you more than you can handle, but He's really pushing it. Today is a tough day. I'm trying to write this and I can barely see what I'm doing. People ask how I'm doing and how I can stand to be away from my baby. Just like any mother, I can't. I just do what I have to. There's another little boy in my house that needs his mommy. I'm completely drained and exhausted. I need someone to come and clean my house and pay my bills.
The biggest question I have right now is what am I going to do if Jaxson is still in the hospital when I go bad to work? How am I going to balance being a mom of two boys that are in different places with working a full time job? I can't even handle it while I'm not working, I can't imagine what I will do when that changes.
And what about Jaxson? Is he going to need 24/7 medical care? How long is the recovery for these procedures he has to have? When does he have to have them? And what if he has to still have heart surgery down the road? And I don't even know if they've tested for my clotting disorder. If he has that on top of everything else, then what? J ust more questions to send with Jayson tomorrow I guess.
I can't even think straight right now. I'm just so worried about Jaxson it makes me sick. I'm at a total loss for what I'm supposed to do and how I'm supposed to act and feel. I just want to crawl in bed and forget everything. My emotions are so out of control right now and I think that's making a huge impact on me, I can usually control how I feel, but between the roller coaster of having a baby combined with worrying about that baby because of health issues, I'm not having much luck in the control department. Hopefully I'll get that under control as I get more answers.
On the bright side, it's lookng like this schedule I am working out with Jeffrey is gong to be great. He's been so much better and easier to handle the last few days that I'm hoping it continues if we can keep that up. He's such a resilient little boy and the light of my life. I'm trying to soak in every moment I can get with him while he'll let me.
I keep telling myself that tomorrow will be better. I just hope that's the case because I'm not sure how much more bad news I can take!
Now back to Jaxson. The cleft team did not come down for his noon feeding today like I thought they were going to, so hopefully they'll come tomorrow. Jaxson refused to eat for me again today anyway, so it's probably not a bad thing. I also got the results of his CT scan. He does have bones fused together in his skull, so he'll have to have surgery to fix it. This will be surgery number 3 that little Jaxson will have to endure. I don't know when yet, I was a little in shock when the doctor was there that I didn't think to ask any questions. So I'm going to write down a bunch of questions and have Jayson talk to the doctors tomorrow while I get my hair done. I feel guilty about going to do that, but I'm being shoved out the door tomorrow morning so I'm going to try and enjoy it.
I feel like I'm losing my mind, that my baby is never going to get to come home. None of this is anyone's fault, it's just that things went wrong when Jayson and my genes got together. But why? I know everyone says that God won't give you more than you can handle, but He's really pushing it. Today is a tough day. I'm trying to write this and I can barely see what I'm doing. People ask how I'm doing and how I can stand to be away from my baby. Just like any mother, I can't. I just do what I have to. There's another little boy in my house that needs his mommy. I'm completely drained and exhausted. I need someone to come and clean my house and pay my bills.
The biggest question I have right now is what am I going to do if Jaxson is still in the hospital when I go bad to work? How am I going to balance being a mom of two boys that are in different places with working a full time job? I can't even handle it while I'm not working, I can't imagine what I will do when that changes.
And what about Jaxson? Is he going to need 24/7 medical care? How long is the recovery for these procedures he has to have? When does he have to have them? And what if he has to still have heart surgery down the road? And I don't even know if they've tested for my clotting disorder. If he has that on top of everything else, then what? J ust more questions to send with Jayson tomorrow I guess.
I can't even think straight right now. I'm just so worried about Jaxson it makes me sick. I'm at a total loss for what I'm supposed to do and how I'm supposed to act and feel. I just want to crawl in bed and forget everything. My emotions are so out of control right now and I think that's making a huge impact on me, I can usually control how I feel, but between the roller coaster of having a baby combined with worrying about that baby because of health issues, I'm not having much luck in the control department. Hopefully I'll get that under control as I get more answers.
On the bright side, it's lookng like this schedule I am working out with Jeffrey is gong to be great. He's been so much better and easier to handle the last few days that I'm hoping it continues if we can keep that up. He's such a resilient little boy and the light of my life. I'm trying to soak in every moment I can get with him while he'll let me.
I keep telling myself that tomorrow will be better. I just hope that's the case because I'm not sure how much more bad news I can take!
Monday, July 16, 2012
Feeding Frustrations and Other Updates
What a weekend. Things have been so crazy with Sara going to ICU last week with clots in her arteries and trying to get Jaxson taken care of while juggling Jeffrey as Jayson bounces between two jobs. Yeah, it's a little nuts. Sara was finally induced this afternoon and should have her baby this evening, so tomorrow is going to be even crazier than today was!
Anyway, let me start with Jaxson. I have been getting increasingly frustrating with Jaxson's inability to eat because his respirations have been so high. He started out at 5mL and each day dropped to taking less and less. Today when I tried to feed him he didn't take anything at all. So I asked the doctors about it this morning and they still say there's nothing wrong with his lungs, but they agree that he should be recovering more by now. It's possible that there's a small obstruction blocking the flow of air, and that obstruction could be caused by his cleft. We won't know until someone from the cleft team comes down and talks to us. And that means that there is still no timeframe for him coming home. He has to be off of the oxygen (which I think is doing nothing at this point) and he has to eat his bottles consistently before they'll let him leave. It's so frustrating to watch him labor to breathe when he reacts to the bottle and he definitely wants it, but his little body just can't handle the challenge. As his mom I just want to do it for him and make it all better, but there's nothing I can do about this one.
In other news, we got some of his test results back. Hs chromosome count came back normal(yay!) but the genetic test they did showed that he had a deletion on chromosome 15. At this point, they don't think it means anything. Jayson and I have to go get tested to see if either of us have the same issue or if our genes could make that issue to determine the likelihood that it's actually a problem. The geneticist actually said that even if our tests don't show anything that they still don't think it's anything. People walk around with extra and missing chromosomes all the time and don't know it. And this test has only been around for 5-7 years, so a lot of times they get this information and don't really know what to do with it. He also wants to follow up with Jaxson and keep tabs on him because it's not horribly abnormal for a baby to be born with one major birth defect, but to have more than one is apparently an anomaly. He got the Sanderson gene for stumping doctors apparently! And they requested permission to take his picture and use it for research and publications. I have a cute kid, so I signed the consent form. If it can help another kid in the future, all the better.
After I left today, Jaxson had a very busy afternoon. The neurosurgeon came down and looked at him, but didn't say much to the nurse. Plastic surgery came down and looked at him too and someone from their team will be back tomorrow at noon to chat with me. He got taken down to have the CT scan on his skull, so hopefully I'll have the results for that tomorrow as well. Then, since he didn't cooperate at noon, OT came back at 3 to feed him again and wouldn't you know he ate 10mL for her! Little brat haha. I'm so happy that he did well! I know it was because he was more relaxed and his breathing was unr control, which also shows that he CAN do it. Just gotta get that breathing down and he'll be taking a full bottle in no time :)
So after my weekend frustrations, I got some answers today and Jaxson made a bit more progress. I think they're still going to do an MRI on his brain and spine before he leaves, unless they included that in the CT today. It was a good day for Jaxson and I've got a plan for a routine for Jeffrey and I. Mornings at Children's and afternoons with Jeffrey. Jeffrey seems in much better spirits since he spent so much time with me today, so hopefully that will continue.
I actually feel rested today. I got a good six hours of sleep last night and took about an hour nap with Jeffrey today. Plus, with all the good news, I don't feel so defeated and hopeless. Everything is going the way it should. My body is cooperating to give Jaxson the one thing I can give him that no one else can. Jeffrey is starting to come around and adjust (I think!). Jaxson is still improving on a daily basis, no matter what lies down the road. Jayson has been absolutely amazing in taking care of the house and bouncing between two jobs. I have amazing friends and family that take fantastic care of me, whether it's an ear to listen or having me over for a relaxing dinner or helping out with Jeffrey or offering me a free hair appointment, I always have someone who's checking in to see how I'm doing and asking if they can help. There is so much love and support in my life, I just know I couldn't do it without any of you!
Plus, as much as I'm dealing with regarding Jaxson, now Sara is about to have her baby (hopefully tonight!) and then she'll be stuck in ICU at Riverside until they can get her blood under control and make sure she doesn't lose any finger tips. So tomorrow's plan is to hang out with Jeffrey in the morning while Jayson goes to get a sweet rocking chair from my grandpa (speaking of awesome family, he's GIVING me his old chair that was like $600 because he bought a new one and didn't want to throw it out! He's great!), then go see Sara and the baby and head to the hospital at some point to feed Jaxson and see him for a bit. It's a flip-flop of the schedule I want, but that's okay as long as I see my boys.
As I wrap this up, I'm looking at Jeffrey who's asleep on the bed next to me. I can't believe how big this little boy is getting! He's built just like his daddy but he handles stress just like his mommy. That means he doesn't eat and he has meltdowns after bottling up his emotions for too long. I swear I did not teach him that! But he's such a great kid, I couldn't ask for a better son. He's my perfect angel and an awesome big brother already. I can't wait to watch my kids grow up together!
Anyway, let me start with Jaxson. I have been getting increasingly frustrating with Jaxson's inability to eat because his respirations have been so high. He started out at 5mL and each day dropped to taking less and less. Today when I tried to feed him he didn't take anything at all. So I asked the doctors about it this morning and they still say there's nothing wrong with his lungs, but they agree that he should be recovering more by now. It's possible that there's a small obstruction blocking the flow of air, and that obstruction could be caused by his cleft. We won't know until someone from the cleft team comes down and talks to us. And that means that there is still no timeframe for him coming home. He has to be off of the oxygen (which I think is doing nothing at this point) and he has to eat his bottles consistently before they'll let him leave. It's so frustrating to watch him labor to breathe when he reacts to the bottle and he definitely wants it, but his little body just can't handle the challenge. As his mom I just want to do it for him and make it all better, but there's nothing I can do about this one.
In other news, we got some of his test results back. Hs chromosome count came back normal(yay!) but the genetic test they did showed that he had a deletion on chromosome 15. At this point, they don't think it means anything. Jayson and I have to go get tested to see if either of us have the same issue or if our genes could make that issue to determine the likelihood that it's actually a problem. The geneticist actually said that even if our tests don't show anything that they still don't think it's anything. People walk around with extra and missing chromosomes all the time and don't know it. And this test has only been around for 5-7 years, so a lot of times they get this information and don't really know what to do with it. He also wants to follow up with Jaxson and keep tabs on him because it's not horribly abnormal for a baby to be born with one major birth defect, but to have more than one is apparently an anomaly. He got the Sanderson gene for stumping doctors apparently! And they requested permission to take his picture and use it for research and publications. I have a cute kid, so I signed the consent form. If it can help another kid in the future, all the better.
After I left today, Jaxson had a very busy afternoon. The neurosurgeon came down and looked at him, but didn't say much to the nurse. Plastic surgery came down and looked at him too and someone from their team will be back tomorrow at noon to chat with me. He got taken down to have the CT scan on his skull, so hopefully I'll have the results for that tomorrow as well. Then, since he didn't cooperate at noon, OT came back at 3 to feed him again and wouldn't you know he ate 10mL for her! Little brat haha. I'm so happy that he did well! I know it was because he was more relaxed and his breathing was unr control, which also shows that he CAN do it. Just gotta get that breathing down and he'll be taking a full bottle in no time :)
So after my weekend frustrations, I got some answers today and Jaxson made a bit more progress. I think they're still going to do an MRI on his brain and spine before he leaves, unless they included that in the CT today. It was a good day for Jaxson and I've got a plan for a routine for Jeffrey and I. Mornings at Children's and afternoons with Jeffrey. Jeffrey seems in much better spirits since he spent so much time with me today, so hopefully that will continue.
I actually feel rested today. I got a good six hours of sleep last night and took about an hour nap with Jeffrey today. Plus, with all the good news, I don't feel so defeated and hopeless. Everything is going the way it should. My body is cooperating to give Jaxson the one thing I can give him that no one else can. Jeffrey is starting to come around and adjust (I think!). Jaxson is still improving on a daily basis, no matter what lies down the road. Jayson has been absolutely amazing in taking care of the house and bouncing between two jobs. I have amazing friends and family that take fantastic care of me, whether it's an ear to listen or having me over for a relaxing dinner or helping out with Jeffrey or offering me a free hair appointment, I always have someone who's checking in to see how I'm doing and asking if they can help. There is so much love and support in my life, I just know I couldn't do it without any of you!
Plus, as much as I'm dealing with regarding Jaxson, now Sara is about to have her baby (hopefully tonight!) and then she'll be stuck in ICU at Riverside until they can get her blood under control and make sure she doesn't lose any finger tips. So tomorrow's plan is to hang out with Jeffrey in the morning while Jayson goes to get a sweet rocking chair from my grandpa (speaking of awesome family, he's GIVING me his old chair that was like $600 because he bought a new one and didn't want to throw it out! He's great!), then go see Sara and the baby and head to the hospital at some point to feed Jaxson and see him for a bit. It's a flip-flop of the schedule I want, but that's okay as long as I see my boys.
As I wrap this up, I'm looking at Jeffrey who's asleep on the bed next to me. I can't believe how big this little boy is getting! He's built just like his daddy but he handles stress just like his mommy. That means he doesn't eat and he has meltdowns after bottling up his emotions for too long. I swear I did not teach him that! But he's such a great kid, I couldn't ask for a better son. He's my perfect angel and an awesome big brother already. I can't wait to watch my kids grow up together!
Saturday, July 14, 2012
Baby Steps
So I didn't get to this yesterday, but yesterday was a great day! Jeffrey went to hang out with his grandma Julie while Jayson went to work and I went to seen Jaxson. I got to feed him again, and he took 4mL from the bottle. They also weaned him down to 0.4 liters of oxygen. The best part of the day: Jaxson's PICC line was removed! That was a line they put in his arm that stretched 18cm into his body. It carried his nutrition that he was taking before he was allowed to eat, so he was getting sugar, lipids and basic nutrition until they determined he could have real food. Since he's been tolerating his feeds and they've been increasing the amount he takes in, the PICC was no longer necessary.
Jaxson still has his feeding tube because he's not eating full meals from a bottle yet, and he has his oxygen, he also has monitors on his chest and one around his ankle. So he's still hooked up to a lot of things, but we're making baby steps in the right direction. The fact that he has no mor IVs is huge! I'm allowed to get him in and out of his crib on my own, without the assistance of a nurse, which is really nice. I can also change his diapers if he needs it without waiting for someone to help move all of his cords out of the way.
While Jaxson is doing well, I am still torn and struggling with a lot of things. I'll talk about Jax first, then we'll get to Jeffrey. Jax looks great and he's making a ton of progress. They even weaned his oxygen down to 0.1 liters today. His respirations were a bit higher, averaging 70-100, but he seemed okay otherwise. But there are still concerns. He still has a heart defect. He still has a tethered spine, which may also mean he has a mild form of spina bifida (we won't know until we get the genetic testing back). He still has to have an MRI on his skull to see if his bones are fused together. And the least of my concerns is his cleft palate. He is a pretty sick little baby, no matter the progress that he's making. I know he's going to be okay, he has to be okay, but it's so hard to stay positive when he's doing well because I know that we're not out of the woods yet. I don't even know when he gets to come home. What if he's still there when it's time for me to go back to work? How am I going to handle that? I'm already completely exhausted, I can't imagine throwing another task on my plate.
And then there's Jeffrey. Jeffrey is quite possibly the most amazing three year old a mo could ask for. He loves to go see his baby brother and he's very protective of him already. He listens to me (mostly) when I tell him to do something, and he doesn't seem to mind going to either of his grandparents houses every day. His stutter is up and down, which is actually a good thing. It's still there, but as long as it goes in cycles then it should go away. He adjusts really well to anything we throw at him, but I still worry about him constantly. He definitely misses mommy. He's now refusing to go to bed n his bed and insists on falling asleep with me in my bed. So far we've let him do it, but at some point it will have to stop. And I've got to figure out a way for he and I to do something together as soon as I can walk for longer than 15 minutes. I need my little boy to understand that mommy loves him and misses him too.
Jeffrey seems to be handling all of this better than I am. I'm draining myself by pumping for Jaxson every 3 hours (I sleep for 5 or 6 usually), traveling back and forth to the hospital, and trying to play with Jeffrey instead of just laying in bed with him. And I'd love to spend some time with my husband too, but that's something we just aren't going to get right now. I'm so glad we have a strong relationship! I feel like I'm being pulled in 5000 directions and I'm trying to meet everyone's needs and failing miserably. Well, maybe not failing Jaxson since he gets most of my time and energy, but everyone else. And it would be really nice if I could do something for myself. Like go to the chiropractor and get a massage.
Now I feel like I'm whining. I have so much to be thankful for with Jaxson, Jeffrey and Jayson. My boys are amazing and they're definitely what keeps me going every day. I just want my baby to come home. There's an empty cradle at the foot of my bed just waiting for him. There's also a perfect little space in between me and Jayson on the bed that he'll fit in on rough nights. I hate that he doesn't get held all the time, or get to be around his family to know that he is loved. My heart just aches thinking about the bond that I'm not forging with him right now. It doesn't even feel like I have 2 kids sometimes. Not that I don't love him or that I love him less than I love Jeffrey, but it's not the same.
I guess everything will come together in time. I just need to trust God's plan, whether I can see it and understand it or not, and believe that everything will be okay. I know it's normal to have these ups and downs, but I feel so guilty when I have a down day. There is so much good in my life to outweigh the bad that I shouldn't complain. I love my boys and I'd do anything for them. If that means that I don't sleep, my back hurts and I give up any time I'd get to myself, the so be it. There, I said it so you don't have to: Suck it up, Sanderson, it's not so bad.
Jaxson still has his feeding tube because he's not eating full meals from a bottle yet, and he has his oxygen, he also has monitors on his chest and one around his ankle. So he's still hooked up to a lot of things, but we're making baby steps in the right direction. The fact that he has no mor IVs is huge! I'm allowed to get him in and out of his crib on my own, without the assistance of a nurse, which is really nice. I can also change his diapers if he needs it without waiting for someone to help move all of his cords out of the way.
While Jaxson is doing well, I am still torn and struggling with a lot of things. I'll talk about Jax first, then we'll get to Jeffrey. Jax looks great and he's making a ton of progress. They even weaned his oxygen down to 0.1 liters today. His respirations were a bit higher, averaging 70-100, but he seemed okay otherwise. But there are still concerns. He still has a heart defect. He still has a tethered spine, which may also mean he has a mild form of spina bifida (we won't know until we get the genetic testing back). He still has to have an MRI on his skull to see if his bones are fused together. And the least of my concerns is his cleft palate. He is a pretty sick little baby, no matter the progress that he's making. I know he's going to be okay, he has to be okay, but it's so hard to stay positive when he's doing well because I know that we're not out of the woods yet. I don't even know when he gets to come home. What if he's still there when it's time for me to go back to work? How am I going to handle that? I'm already completely exhausted, I can't imagine throwing another task on my plate.
And then there's Jeffrey. Jeffrey is quite possibly the most amazing three year old a mo could ask for. He loves to go see his baby brother and he's very protective of him already. He listens to me (mostly) when I tell him to do something, and he doesn't seem to mind going to either of his grandparents houses every day. His stutter is up and down, which is actually a good thing. It's still there, but as long as it goes in cycles then it should go away. He adjusts really well to anything we throw at him, but I still worry about him constantly. He definitely misses mommy. He's now refusing to go to bed n his bed and insists on falling asleep with me in my bed. So far we've let him do it, but at some point it will have to stop. And I've got to figure out a way for he and I to do something together as soon as I can walk for longer than 15 minutes. I need my little boy to understand that mommy loves him and misses him too.
Jeffrey seems to be handling all of this better than I am. I'm draining myself by pumping for Jaxson every 3 hours (I sleep for 5 or 6 usually), traveling back and forth to the hospital, and trying to play with Jeffrey instead of just laying in bed with him. And I'd love to spend some time with my husband too, but that's something we just aren't going to get right now. I'm so glad we have a strong relationship! I feel like I'm being pulled in 5000 directions and I'm trying to meet everyone's needs and failing miserably. Well, maybe not failing Jaxson since he gets most of my time and energy, but everyone else. And it would be really nice if I could do something for myself. Like go to the chiropractor and get a massage.
Now I feel like I'm whining. I have so much to be thankful for with Jaxson, Jeffrey and Jayson. My boys are amazing and they're definitely what keeps me going every day. I just want my baby to come home. There's an empty cradle at the foot of my bed just waiting for him. There's also a perfect little space in between me and Jayson on the bed that he'll fit in on rough nights. I hate that he doesn't get held all the time, or get to be around his family to know that he is loved. My heart just aches thinking about the bond that I'm not forging with him right now. It doesn't even feel like I have 2 kids sometimes. Not that I don't love him or that I love him less than I love Jeffrey, but it's not the same.
I guess everything will come together in time. I just need to trust God's plan, whether I can see it and understand it or not, and believe that everything will be okay. I know it's normal to have these ups and downs, but I feel so guilty when I have a down day. There is so much good in my life to outweigh the bad that I shouldn't complain. I love my boys and I'd do anything for them. If that means that I don't sleep, my back hurts and I give up any time I'd get to myself, the so be it. There, I said it so you don't have to: Suck it up, Sanderson, it's not so bad.
Thursday, July 12, 2012
One Step Closer
We got some good news last night followed by a good day today! Jaxson was transferred to a "big boy" crib and put in clothes! He's so much happier now, and it was so good to see him be comfortable when I got here this morning.
Speaking of when I got here, have I mentioned that Jeffrey is going to be an awesome big brother? He's such an amazing child. He stands on the chair here and leans on the crib to look at his baby brother. He's really gentle when he reaches in to touch him and he's very protective of the little guy. Watching Jeffrey interact with Jaxson warms my heart. There's still a little jealous tendencies when it comes to sharing his mommy, but that's normal and I know it will pass. Even his stutter was better today. I think that once Jax comes home, Jeffrey will have a rough couple of days but then he'll bounce back and his stutter will begin to disappear. I love that kid!
So more good news for Jaxson: he ate from a bottle today! I talked to the occupational therapist and she agreed that I could try to feed him. Voila! It took 30 minutes for him to eat 5 mL, but it's a huge step in the right direction. It just took a mama's touch to comfort him enough to relax and give it a shot. Made me feel so good! Now the plan is to try once a day for the next few days to see how he reacts. We can't do more than that because it's too much stress on his little body, but if he starts to act better about it, we can try more times during the day to feed him. It will just depend on how he acts in between feeds. They're also upping his food intake once or twice a day to get his belly stretched out and ready to eat the amounts he should be taking in. So far he's tolerating everything well and there's talk of removing his PICC line tomorrow or Saturday!
Slowly but surely Jaxson is getting rid of his IV lines and monitors. They transitioned him to a different oxygen unit today as well. They put him on a tank and he's getting 100% oxygen at 0.5 liters instead of air flow at 0.8 or 1 liter. They did that because if he has to leave the hospital on oxygen, the tank is what we would take home. So far I think it's helping him a lot! He still goes through periods where his breathing is fast, but overall it's calmed down.
There's still no timetable for when he's getting out of here, it's all still dependent on him. They would rather he didn't leave the hospital on oxygen, so they'll continue to try and wean him off of it. And he's definitely not leaving until he can eat from a bottle regularly and tolerate it. But bless his little heart, he's trying! He's fighting like a champ and making progress. As long as that keeps up, I know he'll come home eventually. I just have to be patient. And we all know how good I am at that ;) Jaxson is apparently making it his calling to teach me patience, so we'll see how I do haha.
Today has been a good day for baby Jaxson. I hope and pray it continues so we can bring him home!
Speaking of when I got here, have I mentioned that Jeffrey is going to be an awesome big brother? He's such an amazing child. He stands on the chair here and leans on the crib to look at his baby brother. He's really gentle when he reaches in to touch him and he's very protective of the little guy. Watching Jeffrey interact with Jaxson warms my heart. There's still a little jealous tendencies when it comes to sharing his mommy, but that's normal and I know it will pass. Even his stutter was better today. I think that once Jax comes home, Jeffrey will have a rough couple of days but then he'll bounce back and his stutter will begin to disappear. I love that kid!
So more good news for Jaxson: he ate from a bottle today! I talked to the occupational therapist and she agreed that I could try to feed him. Voila! It took 30 minutes for him to eat 5 mL, but it's a huge step in the right direction. It just took a mama's touch to comfort him enough to relax and give it a shot. Made me feel so good! Now the plan is to try once a day for the next few days to see how he reacts. We can't do more than that because it's too much stress on his little body, but if he starts to act better about it, we can try more times during the day to feed him. It will just depend on how he acts in between feeds. They're also upping his food intake once or twice a day to get his belly stretched out and ready to eat the amounts he should be taking in. So far he's tolerating everything well and there's talk of removing his PICC line tomorrow or Saturday!
Slowly but surely Jaxson is getting rid of his IV lines and monitors. They transitioned him to a different oxygen unit today as well. They put him on a tank and he's getting 100% oxygen at 0.5 liters instead of air flow at 0.8 or 1 liter. They did that because if he has to leave the hospital on oxygen, the tank is what we would take home. So far I think it's helping him a lot! He still goes through periods where his breathing is fast, but overall it's calmed down.
There's still no timetable for when he's getting out of here, it's all still dependent on him. They would rather he didn't leave the hospital on oxygen, so they'll continue to try and wean him off of it. And he's definitely not leaving until he can eat from a bottle regularly and tolerate it. But bless his little heart, he's trying! He's fighting like a champ and making progress. As long as that keeps up, I know he'll come home eventually. I just have to be patient. And we all know how good I am at that ;) Jaxson is apparently making it his calling to teach me patience, so we'll see how I do haha.
Today has been a good day for baby Jaxson. I hope and pray it continues so we can bring him home!
Wednesday, July 11, 2012
Mish Mash
I didn't quite know what to title this post because its going to have lots of different stuff in it. First, I'll do Jaxson's update since that's what most everyone wants to hear about anyway.
Jaxson is not interested in taking a bottle. The occupational therapist is going to come back again today and we're going to keep trying to present it to him, but it seems like the extra challenge is too much for his little body. Whenever the bottle is presented, his respiration goes up even more, he starts to get a little sleepy and he wiggles his head around. It's not abnormal for a baby to reject an extra challenge if they think their body can't handle it, it's just kind of furstrating because he won't be able to come home until he eats. He needs to calm his breathing down too. They've lowered his flow and he's no longer receiving extra oxygen, which is good, but his respirations are still high. It's nothing they are worried about, it's just that because he was early and he was a C Section, he still has some extra fluid in his lungs that makes it a little more difficult to breath. The doctors are confident it will correct itself, so if we can get him off the flow he'll be good to go. The last piece of information for him is that he had a spinal ultrasound two nights ago. His spine is tethered at the end insead of straight, which will affect his ability to walk if it's not fixed. I know absolutely nothing else about it, except that we have to meet with a neurosurgeon to discuss surgery when Jaxson is 6 months. The surgery will likely take place around that time as well. So that's two surgeries this little guy is in for when or consider the cleft that will be repaired around 2 years of age. The there's the possibility of a third. Jaxson will have an MRI done on his skull before he leaves to see if his bones are fused together. If not, awesome. If so, surgery because it will hamper brain growth.
But it's still not all bad. Jaxson doesn't need heart surgery. At least not in the immediate future. His brains scans look great as far as functionality and everything else seems to be in order. He's eating every three hours through his feeding tube and they're slowly upping his food intake so the PICC line can be removed. He's improving every day and he looks healthier every day. He's a little wiggle worm when we do kangaroo care and always wants to look at mommy. He has a tendency to rip out his oxygen/flow tubes from his nose and I'm quite sure he'd rip outhis feeding tube if it wasn't taped in. He's got his daddy's attitude and his mummy's body. And he's perfect. And he's loved by so many people on so many levels. I just know he's going to be okay.
And then there's Jeffrey. I seriously could not ask for a better child! He has been absolutely amazing since Jaxson was born. He gets a little fussy and wants a little extra attention here and there, but he's otherwise his usual chipper self, full of attitude and hilarity. There is only one way anyone outside the family would ever know that Jeffrey is anxious or stressed: his stutter. He started it a couple of months ago and while he has good days and bad days, it's definitely gotten worse. Thankfully, my best friends mom is a speech therapist. She said it will go in cycles and it's absolutely normal for him to have extra issues right now while things are crazy. I do worry about him though because he's so much like me. Mr. Independent. He can do anything by himself and nothing is ever wrong with him. He will occasionally ask for me or Jayson so sit with him or play with him because he wants our attention, but he mostly plays with Buckeye and keeps to himself. I just worry that he's not handling this as well as it appears. Not that I think there will be irrepairable damage, but I don't want him to forget that mommy and daddy love him just as much as we love Jaxson. I'm hopeful that Jaxson will get to come home by next week at the latest and then we can get both boys on a schedule and back to normal.
On a completely different note, I have to say that Jayson and I are capable of anything when we do it together. I miss him every day when he goes to work or he stays home with Jeffrey while I sit with Jaxson, but we make such a fantastic team. And our relationship is doing nothing but getting stronger. I can totally see how something like this would strain a marriage and drive people apart, but not us. He does such an amazing job of taking care of me, Jeffrey, the dog and the house. Not to mention spending time w it's Miachael too. I know he's got to be tired but you would never know it to see him. He always says that he needs me to be his strength, but I don't think he knows how much I need him to be mine. I couldn't imagine going through this with someone else and both of us making it out alive.
With everything that's going on, I still have good days and bad days. Today is as good day, yesterday was a little tougher. But I can rest easy knowing that I have an amazing family, including the strongest, bravest three year old ever, and a fantastic support system that helps us with whatever we need. Now it's time for Jaxson to work so we can get him home!
Jaxson is not interested in taking a bottle. The occupational therapist is going to come back again today and we're going to keep trying to present it to him, but it seems like the extra challenge is too much for his little body. Whenever the bottle is presented, his respiration goes up even more, he starts to get a little sleepy and he wiggles his head around. It's not abnormal for a baby to reject an extra challenge if they think their body can't handle it, it's just kind of furstrating because he won't be able to come home until he eats. He needs to calm his breathing down too. They've lowered his flow and he's no longer receiving extra oxygen, which is good, but his respirations are still high. It's nothing they are worried about, it's just that because he was early and he was a C Section, he still has some extra fluid in his lungs that makes it a little more difficult to breath. The doctors are confident it will correct itself, so if we can get him off the flow he'll be good to go. The last piece of information for him is that he had a spinal ultrasound two nights ago. His spine is tethered at the end insead of straight, which will affect his ability to walk if it's not fixed. I know absolutely nothing else about it, except that we have to meet with a neurosurgeon to discuss surgery when Jaxson is 6 months. The surgery will likely take place around that time as well. So that's two surgeries this little guy is in for when or consider the cleft that will be repaired around 2 years of age. The there's the possibility of a third. Jaxson will have an MRI done on his skull before he leaves to see if his bones are fused together. If not, awesome. If so, surgery because it will hamper brain growth.
But it's still not all bad. Jaxson doesn't need heart surgery. At least not in the immediate future. His brains scans look great as far as functionality and everything else seems to be in order. He's eating every three hours through his feeding tube and they're slowly upping his food intake so the PICC line can be removed. He's improving every day and he looks healthier every day. He's a little wiggle worm when we do kangaroo care and always wants to look at mommy. He has a tendency to rip out his oxygen/flow tubes from his nose and I'm quite sure he'd rip outhis feeding tube if it wasn't taped in. He's got his daddy's attitude and his mummy's body. And he's perfect. And he's loved by so many people on so many levels. I just know he's going to be okay.
And then there's Jeffrey. I seriously could not ask for a better child! He has been absolutely amazing since Jaxson was born. He gets a little fussy and wants a little extra attention here and there, but he's otherwise his usual chipper self, full of attitude and hilarity. There is only one way anyone outside the family would ever know that Jeffrey is anxious or stressed: his stutter. He started it a couple of months ago and while he has good days and bad days, it's definitely gotten worse. Thankfully, my best friends mom is a speech therapist. She said it will go in cycles and it's absolutely normal for him to have extra issues right now while things are crazy. I do worry about him though because he's so much like me. Mr. Independent. He can do anything by himself and nothing is ever wrong with him. He will occasionally ask for me or Jayson so sit with him or play with him because he wants our attention, but he mostly plays with Buckeye and keeps to himself. I just worry that he's not handling this as well as it appears. Not that I think there will be irrepairable damage, but I don't want him to forget that mommy and daddy love him just as much as we love Jaxson. I'm hopeful that Jaxson will get to come home by next week at the latest and then we can get both boys on a schedule and back to normal.
On a completely different note, I have to say that Jayson and I are capable of anything when we do it together. I miss him every day when he goes to work or he stays home with Jeffrey while I sit with Jaxson, but we make such a fantastic team. And our relationship is doing nothing but getting stronger. I can totally see how something like this would strain a marriage and drive people apart, but not us. He does such an amazing job of taking care of me, Jeffrey, the dog and the house. Not to mention spending time w it's Miachael too. I know he's got to be tired but you would never know it to see him. He always says that he needs me to be his strength, but I don't think he knows how much I need him to be mine. I couldn't imagine going through this with someone else and both of us making it out alive.
With everything that's going on, I still have good days and bad days. Today is as good day, yesterday was a little tougher. But I can rest easy knowing that I have an amazing family, including the strongest, bravest three year old ever, and a fantastic support system that helps us with whatever we need. Now it's time for Jaxson to work so we can get him home!
Monday, July 9, 2012
Bye Bye Arterial Line!
Today was a big day for Jaxson. Jayson and I arrived at the hospital around 8am (huge thanks to my parents for keeping Jeffrey last night!) so we could be there when the doctors did their rounds. Jaxson had been doing well all weekend, so we were expecting good news and we hoped to get the results from some tests that haven't come in yet.
The neonatologist came by and got the rundown on Jaxson. He gave us the results from the previous days echo, which showed that Jaxson's heart was doing fine. The gap between the two valves has fully closed and no obstructions came up in the process. His aorta is still small, and could possibly cause issues down the road, but now he will just follow up with a cardiologist once a month to see how he's doing. He will also have a slight murmur, but for his condition it's actually expected. So no surgery! And because his heart is doing well, they don't need to take labs anymore, which means his arterial line was removed this afternoon! That took away almost half of the wires he was hooked up to. Now he lays swaddled in his bed comfortably with his little feet covered and warm :)
Since everything else was going well, the doctor had an occupational therapist come down today to try and bottle feed Jaxson. In his short little life, he's been sustained on IV nutrition because they didn't want to stress his body by giving him something to metabolize. So the OT came down to see if he would be willing to take a bottle. The biggest issue right now with that is not his cleft palate, it's his respiration. He breathes about 80-100 times per minute right now (they like 30-60), so the biggest risk is actually choking. Well, Jaxson wasn't interested AT ALL in a bottle, which was sad and frustrating. The OT said that sometimes babies are smart and they won't take a bottle if their body can't handle the challenge. He's been taking a pacifier, so we kind of figure that he just knows he's not ready. Which is fine because he still gets what I've been pumping out for him, it's just through a feeding tube. Which had to go in through his mouth because he takes oxygen through his nose. His poor little face has so much stuff on it now! It's very hard to look at, but at least he's getting real food now.
We have not gotten the results of the chromosome tests yet, but hopefully we'll get those tomorrow. They are going to do a spinal ultrasound tomorrow as well to make sure that the end of his spinal cord isn't wrapped up. He's got a small dimple in his back, but I think Jeffrey has one too. I'm not worried about this one, they are just making sure that everything is checked out while he's there. They are also going to do an MRI on his skull before he leaves the hospital. They think that some of his bones may have fused together early, so they're looking to see if that's the case or not. This one makes me a little nervous. If he has fused bones, he'll have to have surgery because it can hamper brain growth. If not, he'll be fine. I just don't want him to have surgery!
So the million dollar question is when does he get to come home? As soon as his breathing is under control enough for him to eat out of a bottle, and as soon as he proves he can tolerate real food without it causing too much stress on his body. The doctors have done their work and he's pulle through with flying colors. Now it's time for Jaxson to do some work and get healthy so he can come home to mommy, daddy, and big brother Jeffrey!
I feel completely drained and exhausted, but absolutely amazing tonight! My baby is doing things that I thought were milestones he would overcome after surgery months from now. But God is answering all of our prayers and those of everyone else who's said some for us. Jaxson is in much better shape than we could have hoped for and it looks like I'm going to be able to provide what he needs that only a mother can give. I can sleep well (for 4 hours at a time lol) knowing that Jaxson is going to improve every day.
And thank God I have an amazing support system. I had forgotten how much having a C Section hampers you. The first time wasn't so bad because it was just Jeffrey. Now I can't take care of Jeffrey by myself because there are too many restrictions. I certainly can't lift him. I can't stretch to reach things. I can't drive anywhere. So it's not safe for me to watch him at home by myself with the closet family member/car 20 minutes away. So, as my dad just told me, I have to focuse on what I CAN do. Jayson has to go to work tomorrow, so dad will take care of Jeffrey and I will go spend time with Jaxson. Jeffrey will be in good hands and Jaxson will get the attention he needs from his mommy. At least I can take care of one of my boys! And soon enough I'll have them both and handle it just fine. But for now, I'm so happy that I have the help around me that I need. My friends and family are amazing and God is so good to put the right people in the right places at the right times.
I can't promise there won't be any more breakdowns, and I can't promise that there won't be sad posts once in awhile, but for now everything is looking up. Life is about as perfect as its going to get for awhile, so I'm going to soak it up and enjoy it while I can!
The neonatologist came by and got the rundown on Jaxson. He gave us the results from the previous days echo, which showed that Jaxson's heart was doing fine. The gap between the two valves has fully closed and no obstructions came up in the process. His aorta is still small, and could possibly cause issues down the road, but now he will just follow up with a cardiologist once a month to see how he's doing. He will also have a slight murmur, but for his condition it's actually expected. So no surgery! And because his heart is doing well, they don't need to take labs anymore, which means his arterial line was removed this afternoon! That took away almost half of the wires he was hooked up to. Now he lays swaddled in his bed comfortably with his little feet covered and warm :)
Since everything else was going well, the doctor had an occupational therapist come down today to try and bottle feed Jaxson. In his short little life, he's been sustained on IV nutrition because they didn't want to stress his body by giving him something to metabolize. So the OT came down to see if he would be willing to take a bottle. The biggest issue right now with that is not his cleft palate, it's his respiration. He breathes about 80-100 times per minute right now (they like 30-60), so the biggest risk is actually choking. Well, Jaxson wasn't interested AT ALL in a bottle, which was sad and frustrating. The OT said that sometimes babies are smart and they won't take a bottle if their body can't handle the challenge. He's been taking a pacifier, so we kind of figure that he just knows he's not ready. Which is fine because he still gets what I've been pumping out for him, it's just through a feeding tube. Which had to go in through his mouth because he takes oxygen through his nose. His poor little face has so much stuff on it now! It's very hard to look at, but at least he's getting real food now.
We have not gotten the results of the chromosome tests yet, but hopefully we'll get those tomorrow. They are going to do a spinal ultrasound tomorrow as well to make sure that the end of his spinal cord isn't wrapped up. He's got a small dimple in his back, but I think Jeffrey has one too. I'm not worried about this one, they are just making sure that everything is checked out while he's there. They are also going to do an MRI on his skull before he leaves the hospital. They think that some of his bones may have fused together early, so they're looking to see if that's the case or not. This one makes me a little nervous. If he has fused bones, he'll have to have surgery because it can hamper brain growth. If not, he'll be fine. I just don't want him to have surgery!
So the million dollar question is when does he get to come home? As soon as his breathing is under control enough for him to eat out of a bottle, and as soon as he proves he can tolerate real food without it causing too much stress on his body. The doctors have done their work and he's pulle through with flying colors. Now it's time for Jaxson to do some work and get healthy so he can come home to mommy, daddy, and big brother Jeffrey!
I feel completely drained and exhausted, but absolutely amazing tonight! My baby is doing things that I thought were milestones he would overcome after surgery months from now. But God is answering all of our prayers and those of everyone else who's said some for us. Jaxson is in much better shape than we could have hoped for and it looks like I'm going to be able to provide what he needs that only a mother can give. I can sleep well (for 4 hours at a time lol) knowing that Jaxson is going to improve every day.
And thank God I have an amazing support system. I had forgotten how much having a C Section hampers you. The first time wasn't so bad because it was just Jeffrey. Now I can't take care of Jeffrey by myself because there are too many restrictions. I certainly can't lift him. I can't stretch to reach things. I can't drive anywhere. So it's not safe for me to watch him at home by myself with the closet family member/car 20 minutes away. So, as my dad just told me, I have to focuse on what I CAN do. Jayson has to go to work tomorrow, so dad will take care of Jeffrey and I will go spend time with Jaxson. Jeffrey will be in good hands and Jaxson will get the attention he needs from his mommy. At least I can take care of one of my boys! And soon enough I'll have them both and handle it just fine. But for now, I'm so happy that I have the help around me that I need. My friends and family are amazing and God is so good to put the right people in the right places at the right times.
I can't promise there won't be any more breakdowns, and I can't promise that there won't be sad posts once in awhile, but for now everything is looking up. Life is about as perfect as its going to get for awhile, so I'm going to soak it up and enjoy it while I can!
Sunday, July 8, 2012
Realizations
First, I'll give a quick update on Jaxson since I've been getting a lot of messages and comments about him. Jax is doing great! They were going to feed him yesterday, two days ahead of schedule, but one of his routine care tests came back funny. So they did some bloodwork and pushed the feeding back. His blood came back fine so they're going to give him real food today! He's got a PICC line right now that gives him the nutrition he needs, but he has yet to experience milk. He won't be able to take a bottle because his respirations are too high and it's a choking risk, but he'll get to have real food in his belly. The best part of that is that it will be food I provided! I didn't have any luck nursing Jeffrey because of production issues, but I seem to be having much better luck this time. I'm so thankful that I can do this one small thing for my baby. He's fighting so hard and he's doing so well, I wish I could do it for him. His skin color is looking a lot better too. A couple of days ago he was kind of red, on Friday he was kind of pink, and yesterday his skin color was almost normal! He's such a strong boy! Oh, and he's gained weight, which is amazing! He was up to 6lbs 5oz yesterday, one ounce shy of what Jeffrey was when he was born. Everything is moving in the right direction and I couldn't be more proud of my baby or more thankful to the staff at Cildrens.
It's taken me some time to come to a few realizations this time. And it's because when they took Jaxson away from me the day he was born, I totally detached myself from him. It was too emotional. I didn't know what was going to happen. And my baby wasn't by my side so it felt like he didn't exist. Since I've been discharged and I've been able to not only see my son, but hold him, it's finally hitting me. I have two kids. Am I really ready for this? Part of me wants to throw up when I think about raising two boys, but the rest of me says to suck it up and enjoy the ride. I know I'm ready, I think it's just overwhelming right now because one of my kids isn't here. So I'm splitting my dys between my boys and none of the time spent with them overlaps. Plus, I want Jeffrey to see his little brother and be able to touch him and he can't do that right now. Sure, we can take him to Children's, but it's no place for a 3 year old to be for any extended period of time. So I guess I'm anxious to have things be normal, but then there's the realization that things aren't going to be "normal" for us. Jaxson is going to have lots of doctors appointments and procedures that most kids don't have. So we'll have to adjust our normal I suppose. And I suppose that's just fine with me if it means my little boy is happy and healthy!
Another realization I came to is that I have a July 4th baby! His birthday will be forever celebrated with fireworks and parades. He shares a birthday with the greatest country in the world. We will always be able to have his party on his birthday because no one has to work that day. At least there's something about Jaxson that is easy!
I've also come to the realization that it's okay for me to ask for help. Especially while I'm recovering, but even after I recover from surgery it's okay for me to ask for help from people. Right now, I need help with Jeffrey. I can't lift him or move around enough to play with him. I even have trouble making his lunch because I move so slow and I can't stretch to reach things. Yesterday I was blessed enough to have my best friend come over and hang out with me all day so that Jayson could come and go as needed without worry that I wouldn't be okay. Today I'm going to my parents house all day so that Jayson can do a tattoo and I'll have help with Jeffrey. It's not even just him though, there are things I can't do for myself that I have to have help with. And I'm slowly learning that it's okay for me to ask when I need it.
And now that I've talked to Jayson, I learned that Jaxson will have an ECG on his heart today. They'll be checking to see that everything is okay after taking him off his medication. And it's not 100% that they'll feed him now either. No real reason except that they've decided they want to wait the full 72 hours after taking him off the meds. So I'll get more info when I go see him later and hopefully it's more good news!
It's taken me some time to come to a few realizations this time. And it's because when they took Jaxson away from me the day he was born, I totally detached myself from him. It was too emotional. I didn't know what was going to happen. And my baby wasn't by my side so it felt like he didn't exist. Since I've been discharged and I've been able to not only see my son, but hold him, it's finally hitting me. I have two kids. Am I really ready for this? Part of me wants to throw up when I think about raising two boys, but the rest of me says to suck it up and enjoy the ride. I know I'm ready, I think it's just overwhelming right now because one of my kids isn't here. So I'm splitting my dys between my boys and none of the time spent with them overlaps. Plus, I want Jeffrey to see his little brother and be able to touch him and he can't do that right now. Sure, we can take him to Children's, but it's no place for a 3 year old to be for any extended period of time. So I guess I'm anxious to have things be normal, but then there's the realization that things aren't going to be "normal" for us. Jaxson is going to have lots of doctors appointments and procedures that most kids don't have. So we'll have to adjust our normal I suppose. And I suppose that's just fine with me if it means my little boy is happy and healthy!
Another realization I came to is that I have a July 4th baby! His birthday will be forever celebrated with fireworks and parades. He shares a birthday with the greatest country in the world. We will always be able to have his party on his birthday because no one has to work that day. At least there's something about Jaxson that is easy!
I've also come to the realization that it's okay for me to ask for help. Especially while I'm recovering, but even after I recover from surgery it's okay for me to ask for help from people. Right now, I need help with Jeffrey. I can't lift him or move around enough to play with him. I even have trouble making his lunch because I move so slow and I can't stretch to reach things. Yesterday I was blessed enough to have my best friend come over and hang out with me all day so that Jayson could come and go as needed without worry that I wouldn't be okay. Today I'm going to my parents house all day so that Jayson can do a tattoo and I'll have help with Jeffrey. It's not even just him though, there are things I can't do for myself that I have to have help with. And I'm slowly learning that it's okay for me to ask when I need it.
And now that I've talked to Jayson, I learned that Jaxson will have an ECG on his heart today. They'll be checking to see that everything is okay after taking him off his medication. And it's not 100% that they'll feed him now either. No real reason except that they've decided they want to wait the full 72 hours after taking him off the meds. So I'll get more info when I go see him later and hopefully it's more good news!
Friday, July 6, 2012
Jaxson's Journey to Enter the World
So this is long overdue and it's going to be a long post. Mostly for me. I wll chronicle everything that has happened over the last five days so that I have a record of how I was feeling when everything went down. Don't worry, you'll get a full update at the end.
SUNDAY, JULY 1
At about 3am Sunday morning I woke up with contractions. They were about six minutes apart, so I thought that if I could just go back to sleep then they would've away. I wasn't ready to have this baby yet, it was too soon. So back to sleep I went. I woke back up around 7:45am, which is about normal for me, and I was still having contractions. They were 6-10 minutes apart so I knew it wasn't time to do anything yet. I kept drinking water and Gatorade hoping that if I got hydrated then the contractions would stop. No dice. Jayson and I dropped Jeffrey off with my parents and headed to the hospital around noon. By the time I got there, the contractions were 2-5 minutes apart. I told my mom a few days prior that this baby wasn't going to wait and I was about to be proven right. There was one major problem though: absolutely no beds in any NICU anywhere in the city. Which meant that I would have to be transferred to another city to deliver Jaxson. This possibility scared me to death. I didn't want to go to another city where I didn't know the doctors! I wanted to stay here and be comforted knowing that Jaxson was in the hands of people I trusted.
Well, the doctors weren't too keen on transferring me either, and they weren't thrilled about Jaxson being born so early. So they started an IV with some medication that would stop the contractions if I were dehydrated. That was a miserable failure. I knew I wasn't dehydrated and so did the nurse, but we tried it anyway. When it didn't work, the doctor ordered a shot of tributolene. That stuff started to slow things down, but not enough to satisfy the doctors. They wanted to give me a shot of dilaudid. I hadnodesire to have that in my system or in my baby's system. The nurse said that I could refuse it, but that it was extremely dangerous for me to deliver my baby right then because Riverside was not equipped to deal with a baby like Jaxson and transferring him to another city could kill him. It was safer to take the drug, so through tears and guilt I let them put the dilaudid in my IV.
The dilaudid did the trick. No more pain, contractions slowing down and spreading apart. Then, miracle of miracles, they told me that three beds had opened up at children's. S if I went back into labor when the drugs wore off, I wouldn't have to go anywhere. I stayed for a 23 hour observation, but ended up being sent home.
Sunday was a day of emotions. I was not ready to have Jaxson, and since I never dilated he apparently wasn't quite ready to come. He had me scared to death that day, and I knew when I left on Monday that I would be back before the 17th to have him.
MONDAY and TUESDAY
We waited three hours after being told I could go home before I was actually able to leave. It was right before lunchtime that I was told I could go home, and apparently someone dropped the ball somewhere and I didn't get out of there Neil 3pm. I was feeling better, but still having contractions anytime I moved around. So when we got home I just layed down and took it easy. Contractions still came and went, but nothing consistent or painful enough to warrant going back to the hospital.
Tuesday was more of the same. I took it easy all day. I had an appointment with the neonatologist at Riverside that day to discuss the process at birth that they would go through. God must have been looking out for us because the doctor did not have any copies of Dr. Weller's reports. So he knew nothing of the heart isssue. He was not happy, and needless to say, neither was I. So it's a good thing Jaxson didn't come on Sunday because the doctors would have been clueless. At that appointment, the doctor has the reports from all of my ultrasounds. He proceeds to tell me that Jaxson's head is measuring small, which is a symptom of Trisomy 18. Awesome, so we're back to that. No one told me this up to that point, so I was thankful that he brought it to my attention. We weren't out of the woods with T18, and now it wouldn't be a shock if he was born with it. Something else they failed to tell me was that Jaxson had a cyst on his kidney. It as a very small cyst and likely nothing to worry about, but I still wasn't told.
I was livid when I left that appointment. Thankful that the doctor had been so open with me, but livid at the lack of communication. The neonatology unit should have had every report ever done on Jaxson, and I should have been told if there was anything else potentially wrong with him. I went home stressed and mad.
After I got home, I layed down again because I was starting to get uncomfortable and have some contractions. Jayson had to go to work for a few hours, so it was j ust me and Jeffrey. We just hung out and watched tv until my mom texted me to see if I wanted to get dinner with her and dad. A pregnant lady never turns down free food, so of course I would go. We went to Buffalo Wild Wings where the hostess sat us at the farthest table from the doors and bathroom, and what also seemed to be the hottest area of the building. Oh well, we sucked it up and ate. Jayson met up with us in time to enjoy some jalapeño bites and a beer before we all headed home. It was a nice way to end an otherwise stressful day.
WEDNESDAY, JULY 4
Wednesday was a big day. I woke up at 7:41am with severe contractions 6 minutes apart and I was bleeding. Not a lot, but enough for me to raise my eyebrows. I waited. The last thing I wanted was to get to the hospital only to have them send me home again. These contractions were pretty severe, though. I could barely breathe through them and Jeffrey was really worried about his mommy. Around 1 we decided to head to my parents. I figured that I could lay down there and Jeffrey could play with Lexi. That way if we needed to leave, Jeffrey was already in good hands. Staying at my parents lasted all of 20 minutes. My contractions were getting worse and closer together. I had no choice. It to cross my fingers and hope that I didn't get sent home again. And thank God I didn't! When we got there, the nurse did things a little out of order on purpose because of the amount of pain I was in. So she checked me before doing much else. I was 3-4cm dilated! Finally, I was in what they call "active" labor. My Sunday labor wasn't considered active because I never dilated. Now we were getting somewhere. And the doctors didn't mess around. Once they decided I was having this baby, it was a whirlwind of action and nurses and doctors all over the place. At that point I knew my pain would be over soon and I was so thankful that everyone was moving so fast. My mom got there just intime to give me a quick kiss before they got me on the table. I texted m family at 1:28 that we were headed to Riverside. Jaxson Douglas Burks was born at 3:51pm. He was 5 pounds, 10 ounces and 18.5 inches long. His head was 23cm.
The doctors worked their magic on me and got me back together while the neonatologist worked on Jaxson. Then he came over to talk to us. Jaxson has a hole in the roof of his mouth, he said. The back of his head is flat. His ears are a little big. His color looks okay, but we're starting a medication to keep the opening between the two sides of his heart open. Dad can come see him and take pictures now. Jayson went to see our baby while I layed strapped to the table, tears streaming. The nurse anesthesiologist wiped my tears. Jayson came back to my side while they wrapped Jaxson in a blanket and brought him to see me. I got to kiss his little face and touch him before they took him to the NICU. After they finished putting me back together, I was taken to a recovery room. I wasn't allowed to go to my room until I could move my legs and hips. It only took 45 minutes and I was ready to go.
I was in my room for maybe 20 minutes when they brought Jaxson by before they took him to children's. I still couldn't hold him because he was in a portable NICU bed and attached to too many things. I couldn't move very well still because of my soreness, but I got to hold his hand and rub his belly before they took him away. Jayson left shortly after that to take Jeffrey to his other grandmas house and then go to Children's to talk to the doctors. Sara and Lexi left shortly after Jayson did, and my second parents came to see me. Amanda, Mary and Shel didn't stay too long, but it was nice to see them and have some additional support after such a stressful day. When they left, dad went to Children's to be a second set of ears for Jayson and mom stayed here to keep me company. We didn't find out a whole lot that night, so I went to sleep after my mom left and I knew Jayson was handling tings for Jaxson,
This brings us to yesterday and today. I'm going to clump them into one as its been a lot to take in during a short period.
THURSDAY and FRIDAY
Thursday was a day for tests. Bloodwork. ECGs. Monitors. Doctors in and out to pike and prod Jaxson. Me basically left alone all day with the exception of Amanda coming to visit and a short stint with my parents. Jayson came by in the evening to keep me company for a little bit too, but most of the attention was on Jaxson. But that was okay, he needed the attention. The days test results told us that Jaxson's heart wasn't as bad as we thought. The left side is slightly smaller, but it's functioning correctly. His aorta is thin, so they kept the valve between the two sides of his heart open for the time being. His brain scan came back fine, but it looks like he'll need an additional scan to see if some of his skull bones have fused together early. He has a small cyst on his kidney that's not affecting anything so they aren't doing anything about it. His skull and cleft palate are not emergencies either, so doing anything about them will take place later. We should have the chromosome testing back on Monday and the genetic testing in a couple of weeks. First and foremost, let's focus on the heart.
Which brings us to Friday, today. This morning at 6am they took Jaxson off of his heart medication to allow the opening between the two sides of his heart to close. He is being monitored very closely. If he has any reaction whatsoever, they start him back on the medication and we talk about surgery. If not, we discuss other things. As of right now, I was discharged and went to see my baby boy. I got lucky and they let me hold him for awhile. Then they moved him to a different pod and I started to feel sick so we left. Jeffrey and Buckeye were extremely happy to see me tonight. Hopefully I feel better tomorrow so I can go back. Oh and so far so good without the heart medicine! Fingers crossed and prayers it stays that way so we can bring him home soon!
In closing, I want to thank everyone for their continued support and prayers. We could not do this without any of you! I wish I could thank everyone individually, but we have been so overwhelmed that it would be impossible. And that means more to me than anything. So thanks. And keep those prayers coming!
SUNDAY, JULY 1
At about 3am Sunday morning I woke up with contractions. They were about six minutes apart, so I thought that if I could just go back to sleep then they would've away. I wasn't ready to have this baby yet, it was too soon. So back to sleep I went. I woke back up around 7:45am, which is about normal for me, and I was still having contractions. They were 6-10 minutes apart so I knew it wasn't time to do anything yet. I kept drinking water and Gatorade hoping that if I got hydrated then the contractions would stop. No dice. Jayson and I dropped Jeffrey off with my parents and headed to the hospital around noon. By the time I got there, the contractions were 2-5 minutes apart. I told my mom a few days prior that this baby wasn't going to wait and I was about to be proven right. There was one major problem though: absolutely no beds in any NICU anywhere in the city. Which meant that I would have to be transferred to another city to deliver Jaxson. This possibility scared me to death. I didn't want to go to another city where I didn't know the doctors! I wanted to stay here and be comforted knowing that Jaxson was in the hands of people I trusted.
Well, the doctors weren't too keen on transferring me either, and they weren't thrilled about Jaxson being born so early. So they started an IV with some medication that would stop the contractions if I were dehydrated. That was a miserable failure. I knew I wasn't dehydrated and so did the nurse, but we tried it anyway. When it didn't work, the doctor ordered a shot of tributolene. That stuff started to slow things down, but not enough to satisfy the doctors. They wanted to give me a shot of dilaudid. I hadnodesire to have that in my system or in my baby's system. The nurse said that I could refuse it, but that it was extremely dangerous for me to deliver my baby right then because Riverside was not equipped to deal with a baby like Jaxson and transferring him to another city could kill him. It was safer to take the drug, so through tears and guilt I let them put the dilaudid in my IV.
The dilaudid did the trick. No more pain, contractions slowing down and spreading apart. Then, miracle of miracles, they told me that three beds had opened up at children's. S if I went back into labor when the drugs wore off, I wouldn't have to go anywhere. I stayed for a 23 hour observation, but ended up being sent home.
Sunday was a day of emotions. I was not ready to have Jaxson, and since I never dilated he apparently wasn't quite ready to come. He had me scared to death that day, and I knew when I left on Monday that I would be back before the 17th to have him.
MONDAY and TUESDAY
We waited three hours after being told I could go home before I was actually able to leave. It was right before lunchtime that I was told I could go home, and apparently someone dropped the ball somewhere and I didn't get out of there Neil 3pm. I was feeling better, but still having contractions anytime I moved around. So when we got home I just layed down and took it easy. Contractions still came and went, but nothing consistent or painful enough to warrant going back to the hospital.
Tuesday was more of the same. I took it easy all day. I had an appointment with the neonatologist at Riverside that day to discuss the process at birth that they would go through. God must have been looking out for us because the doctor did not have any copies of Dr. Weller's reports. So he knew nothing of the heart isssue. He was not happy, and needless to say, neither was I. So it's a good thing Jaxson didn't come on Sunday because the doctors would have been clueless. At that appointment, the doctor has the reports from all of my ultrasounds. He proceeds to tell me that Jaxson's head is measuring small, which is a symptom of Trisomy 18. Awesome, so we're back to that. No one told me this up to that point, so I was thankful that he brought it to my attention. We weren't out of the woods with T18, and now it wouldn't be a shock if he was born with it. Something else they failed to tell me was that Jaxson had a cyst on his kidney. It as a very small cyst and likely nothing to worry about, but I still wasn't told.
I was livid when I left that appointment. Thankful that the doctor had been so open with me, but livid at the lack of communication. The neonatology unit should have had every report ever done on Jaxson, and I should have been told if there was anything else potentially wrong with him. I went home stressed and mad.
After I got home, I layed down again because I was starting to get uncomfortable and have some contractions. Jayson had to go to work for a few hours, so it was j ust me and Jeffrey. We just hung out and watched tv until my mom texted me to see if I wanted to get dinner with her and dad. A pregnant lady never turns down free food, so of course I would go. We went to Buffalo Wild Wings where the hostess sat us at the farthest table from the doors and bathroom, and what also seemed to be the hottest area of the building. Oh well, we sucked it up and ate. Jayson met up with us in time to enjoy some jalapeño bites and a beer before we all headed home. It was a nice way to end an otherwise stressful day.
WEDNESDAY, JULY 4
Wednesday was a big day. I woke up at 7:41am with severe contractions 6 minutes apart and I was bleeding. Not a lot, but enough for me to raise my eyebrows. I waited. The last thing I wanted was to get to the hospital only to have them send me home again. These contractions were pretty severe, though. I could barely breathe through them and Jeffrey was really worried about his mommy. Around 1 we decided to head to my parents. I figured that I could lay down there and Jeffrey could play with Lexi. That way if we needed to leave, Jeffrey was already in good hands. Staying at my parents lasted all of 20 minutes. My contractions were getting worse and closer together. I had no choice. It to cross my fingers and hope that I didn't get sent home again. And thank God I didn't! When we got there, the nurse did things a little out of order on purpose because of the amount of pain I was in. So she checked me before doing much else. I was 3-4cm dilated! Finally, I was in what they call "active" labor. My Sunday labor wasn't considered active because I never dilated. Now we were getting somewhere. And the doctors didn't mess around. Once they decided I was having this baby, it was a whirlwind of action and nurses and doctors all over the place. At that point I knew my pain would be over soon and I was so thankful that everyone was moving so fast. My mom got there just intime to give me a quick kiss before they got me on the table. I texted m family at 1:28 that we were headed to Riverside. Jaxson Douglas Burks was born at 3:51pm. He was 5 pounds, 10 ounces and 18.5 inches long. His head was 23cm.
The doctors worked their magic on me and got me back together while the neonatologist worked on Jaxson. Then he came over to talk to us. Jaxson has a hole in the roof of his mouth, he said. The back of his head is flat. His ears are a little big. His color looks okay, but we're starting a medication to keep the opening between the two sides of his heart open. Dad can come see him and take pictures now. Jayson went to see our baby while I layed strapped to the table, tears streaming. The nurse anesthesiologist wiped my tears. Jayson came back to my side while they wrapped Jaxson in a blanket and brought him to see me. I got to kiss his little face and touch him before they took him to the NICU. After they finished putting me back together, I was taken to a recovery room. I wasn't allowed to go to my room until I could move my legs and hips. It only took 45 minutes and I was ready to go.
I was in my room for maybe 20 minutes when they brought Jaxson by before they took him to children's. I still couldn't hold him because he was in a portable NICU bed and attached to too many things. I couldn't move very well still because of my soreness, but I got to hold his hand and rub his belly before they took him away. Jayson left shortly after that to take Jeffrey to his other grandmas house and then go to Children's to talk to the doctors. Sara and Lexi left shortly after Jayson did, and my second parents came to see me. Amanda, Mary and Shel didn't stay too long, but it was nice to see them and have some additional support after such a stressful day. When they left, dad went to Children's to be a second set of ears for Jayson and mom stayed here to keep me company. We didn't find out a whole lot that night, so I went to sleep after my mom left and I knew Jayson was handling tings for Jaxson,
This brings us to yesterday and today. I'm going to clump them into one as its been a lot to take in during a short period.
THURSDAY and FRIDAY
Thursday was a day for tests. Bloodwork. ECGs. Monitors. Doctors in and out to pike and prod Jaxson. Me basically left alone all day with the exception of Amanda coming to visit and a short stint with my parents. Jayson came by in the evening to keep me company for a little bit too, but most of the attention was on Jaxson. But that was okay, he needed the attention. The days test results told us that Jaxson's heart wasn't as bad as we thought. The left side is slightly smaller, but it's functioning correctly. His aorta is thin, so they kept the valve between the two sides of his heart open for the time being. His brain scan came back fine, but it looks like he'll need an additional scan to see if some of his skull bones have fused together early. He has a small cyst on his kidney that's not affecting anything so they aren't doing anything about it. His skull and cleft palate are not emergencies either, so doing anything about them will take place later. We should have the chromosome testing back on Monday and the genetic testing in a couple of weeks. First and foremost, let's focus on the heart.
Which brings us to Friday, today. This morning at 6am they took Jaxson off of his heart medication to allow the opening between the two sides of his heart to close. He is being monitored very closely. If he has any reaction whatsoever, they start him back on the medication and we talk about surgery. If not, we discuss other things. As of right now, I was discharged and went to see my baby boy. I got lucky and they let me hold him for awhile. Then they moved him to a different pod and I started to feel sick so we left. Jeffrey and Buckeye were extremely happy to see me tonight. Hopefully I feel better tomorrow so I can go back. Oh and so far so good without the heart medicine! Fingers crossed and prayers it stays that way so we can bring him home soon!
In closing, I want to thank everyone for their continued support and prayers. We could not do this without any of you! I wish I could thank everyone individually, but we have been so overwhelmed that it would be impossible. And that means more to me than anything. So thanks. And keep those prayers coming!
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