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!
Monday, July 16, 2012
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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