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.
Friday, July 27, 2012
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.
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