So, Isaac is 18 days old today, and he is finally home. They let us bring him home from the hospital tonight just before dinnertime. He had his surgery on Thursday to remove the tubes from his nose, and everything went well with that. He seems to be doing great now. We didn’t expect that he would be discharged from the hospital today – we thought they might let us bring him home early next week, but they said that he was doing well and there was no reason to keep him longer. He will have some follow-up appointments with the pediatrician and with the ENT who did his surgery next week. He came home without any monitors (up until yesterday the nurses were talking about sending him home with an apnea monitor), and it is nice to hold him and not worry about any wires or IVs connected to him. The nurses have mentioned that he has been awake a lot at night, so we’ll see how long it takes before he gets his days and nights straight again. But it was nice that they happened to have the same kind of baby swing at the NICU as the one we own, so we know that he likes to sleep in his swing already, if he needs any extra help with the sleeping at night.
The boys are excited to have him home. Kolby and Eli both took turns holding him (after we talked about washing their hands each time before touching the baby). And Camden touched his hair a few times and kind of petted his head. I am curious to see how Camden will adjust to having a new baby – but I think I will need to give it a while to let everything get back to normal before we can tell if he is going to be jealous at all or not. Camden has had a pretty rough time with me being gone everyday for the last few weeks – he has been more fussy than normal most days, so hopefully he will return to his normal, happy self soon now that we are all going to have a lot more time together at home.
This evening, after dinner, I picked him up and held him for a little while before nursing him. I just sat on the couch while he ate – I didn’t need to weigh him before and after he ate to measure exactly how many milliliters he ate or have a lactation specialist or nurse watching to see how well he latched on – and then after he finished, I laid down on the couch and just held him sleeping for a little while. This is how it should be to have a new baby.
Thank you to all of you who have helped watch our kids for us, brought us meals, called us, visited, and kept us in your prayers through all this. We really appreciate it! We probably won’t be taking Isaac out much for a while, because we really want to avoid him getting sick this winter. But I will be sure to post some more photos of him sometime soon.
Showing posts with label NICU. Show all posts
Showing posts with label NICU. Show all posts
10 November 2007
05 November 2007
My Feelings on the NICU
So, we have been posting a lot lately about how Isaac is doing in the NICU, but not a lot about how we are doing and what we are feeling. I have been thinking a lot about this lately – how I am feeling, and how I should be feeling – about all this. Isaac will hit his 2-week-old birthday tomorrow, and he hasn’t even been outside yet. Yesterday, though, after I gave him a bath (so he had all of his monitors off), I took him over to a window and let him look outside (although he mostly just squinted at the bright light coming in). These last two weeks have been a blur – I can’t really keep track anymore of what has happened on each specific day since we’ve been here. And it seems like his stay in the NICU has gone on forever. The surgeon originally told us that he thought we would be taking Isaac home on the Sunday or Monday after he was born, but since the disappointment of not taking him home that early has worn off, I am just trying to not figure out a specific day when I think he should be ready to come home, because I think it is likely that his stay here may continue to drag on longer than we plan.
It is a mix of emotions being here. I am glad that Isaac is being taken care of by competent doctors and nurses, and that he is constantly being monitored in case something goes wrong. I am glad that the night he had that bad episode he was taken care of and people were able to help him right away. But it is hard having him here. I have been thinking a lot about it, and I think this has been the hardest thing I’ve ever had happen in my life so far. Thinking that makes me realize how nice my life has been, and how we haven’t had many difficult trials. I know that it could be a lot worse – he could have some serious problem that would affect him (and us) for the rest of his life. That’s why I keep thinking that we should be happy. Even though he has been in the NICU longer than we expected at first, they have continued to tell us from the beginning that they think he will have no long-term problems after we get him home. But at the same time that I am telling myself we should be grateful for that, I am still feeling bad that we don’t have our baby home and that everything is not normal right now. It is reassuring to me that as I have been feeling this way, I haven’t thought to question why this is happening to us or to question my faith in God. I know there is a reason. The thing that keeps coming to me is “endure to the end” – I think that is the reason for this, at least for me.
I have had times when I just feel sad about this whole thing. When I spend each day at the hospital, then I come home tired (just mentally, physically, and emotionally worn out), and my boys are excited to see me. I am excited to see them too – I know that not being with me for the majority of each day must be hard on them too. But they are active and sometimes wild, and I am tired by the end of the day, and then I end up getting mad or yelling at them. And while I am doing that, I am thinking, I am seeing what can happen when you have a sick child, and we have been blessed with all of these healthy, strong, happy children – I should be grateful that they are well, not getting frustrated with them when they are fussy or fighting with each other.
The other day, I walked into Isaac’s little room in the NICU, and the lights were turned off and he was sleeping soundly, all alone. And I just started crying, thinking of him all alone, not being held as much as he would be if he were home with us. And I am thinking, logically, that the nurse probably just finished taking care of him a few minutes before I got there, and I know that the nurses are feeding him about every three hours when I am not there, so he is being held at least every three hours during his feedings. But I just cried, thinking of my baby there, alone in the dark.
I wonder if he will be so used to a new nurse on shift every 12 hours, that he will not bond with me like my other kids have. Or what if he is so used to being in the NICU, where there is the noise of monitors beeping, nurses socializing, and other babies crying – but no big brothers running around playing and yelling – will he adjust alright to sleeping at home? And I know the nurses are feeding him about every 3 hours – so, is he going to expect to be fed that often at home (even after we know he is getting plenty to eat), and will this affect his sleeping, so that he might not sleep through the night as early as the other boys did? I worry about what little problems like that might occur after we take him home, that may not have happened if he had been at home with us from the start. And, even though I know it is not logical, since they have told us from the beginning that this is a problem that they can fix and he should be better soon, I still worry that he could die from some bad episode with his breathing one night or something. I don’t think I could handle that. I know, realistically, that that won’t happen – but the thought of it is still there, in the back of my head.
And then I start thinking about bringing him home. I am definitely looking forward to that day. But what if his oxygen rates desat sometime in the night at home, and he won’t have any of the hospital monitors on there, and we don’t know there is a problem? They say that they won’t let him go home until he is doing fine without all the monitors, but who knows what could happen. I want to do normal things with him – to dress him in cute clothes from home, rather than just the plain NICU outfits. But it almost seems silly – to bring clothes in that will probably just get dirty and have to be taken back home to be washed, if we could just save our energy and let the nurses change his clothes and not worry about extra laundry until we take him home. I want to be able to walk around with him, but I have only taken him away from his monitors a couple times for a few minutes. I want to just have him home and have everything be normal. But I guess that will come soon enough. And maybe by then I will be thinking of all the good nights of sleep I got while Isaac was in the NICU with nurses to stay up and take care of him all night long.
It is weird how something like this can make you feel. I am just really looking forward to being home and being a normal family again.
It is a mix of emotions being here. I am glad that Isaac is being taken care of by competent doctors and nurses, and that he is constantly being monitored in case something goes wrong. I am glad that the night he had that bad episode he was taken care of and people were able to help him right away. But it is hard having him here. I have been thinking a lot about it, and I think this has been the hardest thing I’ve ever had happen in my life so far. Thinking that makes me realize how nice my life has been, and how we haven’t had many difficult trials. I know that it could be a lot worse – he could have some serious problem that would affect him (and us) for the rest of his life. That’s why I keep thinking that we should be happy. Even though he has been in the NICU longer than we expected at first, they have continued to tell us from the beginning that they think he will have no long-term problems after we get him home. But at the same time that I am telling myself we should be grateful for that, I am still feeling bad that we don’t have our baby home and that everything is not normal right now. It is reassuring to me that as I have been feeling this way, I haven’t thought to question why this is happening to us or to question my faith in God. I know there is a reason. The thing that keeps coming to me is “endure to the end” – I think that is the reason for this, at least for me.
I have had times when I just feel sad about this whole thing. When I spend each day at the hospital, then I come home tired (just mentally, physically, and emotionally worn out), and my boys are excited to see me. I am excited to see them too – I know that not being with me for the majority of each day must be hard on them too. But they are active and sometimes wild, and I am tired by the end of the day, and then I end up getting mad or yelling at them. And while I am doing that, I am thinking, I am seeing what can happen when you have a sick child, and we have been blessed with all of these healthy, strong, happy children – I should be grateful that they are well, not getting frustrated with them when they are fussy or fighting with each other.
The other day, I walked into Isaac’s little room in the NICU, and the lights were turned off and he was sleeping soundly, all alone. And I just started crying, thinking of him all alone, not being held as much as he would be if he were home with us. And I am thinking, logically, that the nurse probably just finished taking care of him a few minutes before I got there, and I know that the nurses are feeding him about every three hours when I am not there, so he is being held at least every three hours during his feedings. But I just cried, thinking of my baby there, alone in the dark.
I wonder if he will be so used to a new nurse on shift every 12 hours, that he will not bond with me like my other kids have. Or what if he is so used to being in the NICU, where there is the noise of monitors beeping, nurses socializing, and other babies crying – but no big brothers running around playing and yelling – will he adjust alright to sleeping at home? And I know the nurses are feeding him about every 3 hours – so, is he going to expect to be fed that often at home (even after we know he is getting plenty to eat), and will this affect his sleeping, so that he might not sleep through the night as early as the other boys did? I worry about what little problems like that might occur after we take him home, that may not have happened if he had been at home with us from the start. And, even though I know it is not logical, since they have told us from the beginning that this is a problem that they can fix and he should be better soon, I still worry that he could die from some bad episode with his breathing one night or something. I don’t think I could handle that. I know, realistically, that that won’t happen – but the thought of it is still there, in the back of my head.
And then I start thinking about bringing him home. I am definitely looking forward to that day. But what if his oxygen rates desat sometime in the night at home, and he won’t have any of the hospital monitors on there, and we don’t know there is a problem? They say that they won’t let him go home until he is doing fine without all the monitors, but who knows what could happen. I want to do normal things with him – to dress him in cute clothes from home, rather than just the plain NICU outfits. But it almost seems silly – to bring clothes in that will probably just get dirty and have to be taken back home to be washed, if we could just save our energy and let the nurses change his clothes and not worry about extra laundry until we take him home. I want to be able to walk around with him, but I have only taken him away from his monitors a couple times for a few minutes. I want to just have him home and have everything be normal. But I guess that will come soon enough. And maybe by then I will be thinking of all the good nights of sleep I got while Isaac was in the NICU with nurses to stay up and take care of him all night long.
It is weird how something like this can make you feel. I am just really looking forward to being home and being a normal family again.
04 November 2007
On Halloween
Here are pictures that we took on Halloween. That morning Michael and I went into the NICU and took some cute pictures of Isaac in his costume. And after spending the day with Isaac, we all met at the medical school with my mom and the boys for the annual Halloween party. The boys loved trick-or-treating through the medical school, and for the first year none of them were worn out and crying before the end of the night, so we actually completed the entire trick-or-treating route through the school. (Each of the kids filled their little pumpkin candy buckets twice, and we ended up with a grocery sack full of candy). It was a fun night for the boys.
03 November 2007
Some New Pictures of Isaac
Sleeping with the stuffed dragon Nana gave him:
Smiles:
Smiling for Daddy:
Isaac with his bili blanket
(his jaundice is better now so he doesn't need this anymore):
So Cute!
Here he is after the first time Mommy and Daddy got to give him a bath (so nice to see him with no tubes or wires attached to him at all for a little while). I took the photo of his big brothers in so they could 'be with him' too.
Look at that beautiful hair!
Happy Halloween!
Here are photos of each of our boys in their Halloween costumes each year since Kolby's first Halloween. I was so pleased with how cute the pictures turned out this year. We even had a chance to take a picture of Isaac on Halloween -- we just got him dressed up in his costume and used a blanket to cover up all the wires and tubes of the NICU. I thought it turned out well for doing it ourselves. Enjoy!
01 November 2007
Another Week in the NICU
So, we’ve had a busy week. Michael and I have spent every day at the hospital with Isaac in the NICU. Since we last posted an update here, Isaac has been doing pretty well. On Monday he started eating from a bottle for the first time – I have been pumping, so we haven’t had to give him any formula. He took the bottle well. They have been keeping track of how much he is eating – he started on Monday taking 10 milliliters, and now he is up to 75 milliliters. He started nursing on Tuesday for the first time since the night he was born. They have a very sensitive scale that they weigh him on before and after he nurses so that they can continue to keep track of how much he is eating. They seem very pleased that he is eating so well, and the doctors are happy that he is able to nurse because that means that he can breath through his nose while his mouth is totally blocked, which shows that the stents in his nose are working to help him breath well.
On Tuesday (Isaac’s due date), they started him on a bili blanket to help with jaundice. He also got weaned off of the nasal cannula (the little tube that ran under his nose to provide a little oxygen flow) that day. It was nice to have that off – he is looking more and more like a normal, healthy baby as they gradually remove more and more of the tubes and wires that are all around his little crib in his NICU room.
Wednesday was Kolby’s 4th birthday and Halloween. My mom made cupcakes for Kolby to take to his preschool class at the YMCA, and he was so excited – he was bouncing off the walls all day. He got to wear his Halloween costume to his classes too, which was fun for him. After we dropped him off at the YMCA, Michael and I went to the hospital. I got a chance to nurse Isaac that morning, and then we dressed him up in the little teddy bear Halloween costume that Camden wore last year and took some fun photos. He was so cute! Then Michael and I attended an infant CPR class -- a requirement for parents before leaving the NICU. After that Michael had a quick meeting for a derm research project he is working on, and then he went home to pick up my mom and the boys. I nursed Isaac again and then walked over to the medical school to meet the rest of the family. The boys were excited to be all dressed up in their costumes and go trick-or-treating through the halls of the medical school at the annual MCW Halloween party. I have to say, I think we were in the company of the cutest Tigger, dinosaur, and lion in the whole building. After accumulating about 15 pounds of candy between the three boys, we went and got some dinner and put the boys down to bed.
Today Michael started his pediatric radiology rotation. His October rotation was an elective course and he had already finished most of the work for the rotation when Isaac went into the NICU, so they gave him the last few days off and just let him finish his last few projects in his own time. So it is weird now that he is starting a new rotation and can’t go with me to the NICU every day. Luckily his rotation this month is also in Children’s Hospital, just a few floors down from the NICU, so he could get there quickly if he needed to. Kolby had his 4-year-old check-up at the doctor’s office late this morning, so I waited to take him to that appointment before going into the hospital today. Kolby is healthy, and they did a hearing and vision test, which he did well on. He got several shots, and it was the first time that I ever felt kinda sad when one of my kids got shots, because Kolby is now old enough that he was saying things like, “No, Mommy, it hurts,” while the nurse was giving him the shots, instead of just crying. Luckily he calmed down a little when he got a sticker afterwards.
Shortly after I got to the hospital this afternoon, Michael arrived too. The doctor on his peds radiology rotation was nice and said that spending time with his baby was more important than anything he could teach him, so he let him leave around 2:00 today. Isaac had an IV in his foot that they weren’t using anymore, but they had left it in so that they wouldn’t have to put in a new one in case he ended up having a surgery this week to remove the stents from his nose. But last night I guess the IV fell out, so they have just left it out, and he didn’t end up needing it for surgery – so that’s one less tube hanging off of his body – one step closer to ‘normal.’ We were able to give Isaac a bath for the first time – the nurses had always done it up until now. And I brushed his hair all cute afterwards, which was fun. Isaac did ok with nursing today, and then Michael got to give him a bottle feeding too.
The ENT doctor came by to talk to us, and he gave us the option to have them do the surgery tomorrow to remove his stents or to try to wait another week. After discussing it with the doctor, we decided to try to wait another week and let his nose continue to heal before removing the stents. So, he has that surgery scheduled for next Thursday. The other big thing that the doctor told us was that we should prepare ourselves for the possibility that Isaac might have another breathing problem besides the nasal passageway. The only way to tell that is to remove the stents from his nose and give him time to recover from the surgery and then see if he is breathing normally. If not, then they will consider the possibility that he could have another problem, like possibly with his tongue falling back in his mouth all the time and blocking the airway or something else. Anyway, it sounds like he will not be coming home anytime soon. We know for sure now that they will be keeping him there through next Thursday for the surgery, and then he will probably need a few days to recover from that. Plus they told us originally that once he gets to the point where he is breathing and eating normally, he will still need to stay in the NICU for 48 to 72 hours for them to monitor him and make sure he is doing fine. So, as long as there are no further complications, it looks like it will still be at least a week and a half before he gets to come home.
On Tuesday (Isaac’s due date), they started him on a bili blanket to help with jaundice. He also got weaned off of the nasal cannula (the little tube that ran under his nose to provide a little oxygen flow) that day. It was nice to have that off – he is looking more and more like a normal, healthy baby as they gradually remove more and more of the tubes and wires that are all around his little crib in his NICU room.
Wednesday was Kolby’s 4th birthday and Halloween. My mom made cupcakes for Kolby to take to his preschool class at the YMCA, and he was so excited – he was bouncing off the walls all day. He got to wear his Halloween costume to his classes too, which was fun for him. After we dropped him off at the YMCA, Michael and I went to the hospital. I got a chance to nurse Isaac that morning, and then we dressed him up in the little teddy bear Halloween costume that Camden wore last year and took some fun photos. He was so cute! Then Michael and I attended an infant CPR class -- a requirement for parents before leaving the NICU. After that Michael had a quick meeting for a derm research project he is working on, and then he went home to pick up my mom and the boys. I nursed Isaac again and then walked over to the medical school to meet the rest of the family. The boys were excited to be all dressed up in their costumes and go trick-or-treating through the halls of the medical school at the annual MCW Halloween party. I have to say, I think we were in the company of the cutest Tigger, dinosaur, and lion in the whole building. After accumulating about 15 pounds of candy between the three boys, we went and got some dinner and put the boys down to bed.
Today Michael started his pediatric radiology rotation. His October rotation was an elective course and he had already finished most of the work for the rotation when Isaac went into the NICU, so they gave him the last few days off and just let him finish his last few projects in his own time. So it is weird now that he is starting a new rotation and can’t go with me to the NICU every day. Luckily his rotation this month is also in Children’s Hospital, just a few floors down from the NICU, so he could get there quickly if he needed to. Kolby had his 4-year-old check-up at the doctor’s office late this morning, so I waited to take him to that appointment before going into the hospital today. Kolby is healthy, and they did a hearing and vision test, which he did well on. He got several shots, and it was the first time that I ever felt kinda sad when one of my kids got shots, because Kolby is now old enough that he was saying things like, “No, Mommy, it hurts,” while the nurse was giving him the shots, instead of just crying. Luckily he calmed down a little when he got a sticker afterwards.
Shortly after I got to the hospital this afternoon, Michael arrived too. The doctor on his peds radiology rotation was nice and said that spending time with his baby was more important than anything he could teach him, so he let him leave around 2:00 today. Isaac had an IV in his foot that they weren’t using anymore, but they had left it in so that they wouldn’t have to put in a new one in case he ended up having a surgery this week to remove the stents from his nose. But last night I guess the IV fell out, so they have just left it out, and he didn’t end up needing it for surgery – so that’s one less tube hanging off of his body – one step closer to ‘normal.’ We were able to give Isaac a bath for the first time – the nurses had always done it up until now. And I brushed his hair all cute afterwards, which was fun. Isaac did ok with nursing today, and then Michael got to give him a bottle feeding too.
The ENT doctor came by to talk to us, and he gave us the option to have them do the surgery tomorrow to remove his stents or to try to wait another week. After discussing it with the doctor, we decided to try to wait another week and let his nose continue to heal before removing the stents. So, he has that surgery scheduled for next Thursday. The other big thing that the doctor told us was that we should prepare ourselves for the possibility that Isaac might have another breathing problem besides the nasal passageway. The only way to tell that is to remove the stents from his nose and give him time to recover from the surgery and then see if he is breathing normally. If not, then they will consider the possibility that he could have another problem, like possibly with his tongue falling back in his mouth all the time and blocking the airway or something else. Anyway, it sounds like he will not be coming home anytime soon. We know for sure now that they will be keeping him there through next Thursday for the surgery, and then he will probably need a few days to recover from that. Plus they told us originally that once he gets to the point where he is breathing and eating normally, he will still need to stay in the NICU for 48 to 72 hours for them to monitor him and make sure he is doing fine. So, as long as there are no further complications, it looks like it will still be at least a week and a half before he gets to come home.
28 October 2007
An Acute Life Threatening Event
I know Michael posted a quick update on Isaac’s condition that he wrote earlier today, but I just wanted to give a quick update on what the doctor said about Isaac today.
As Michael mentioned earlier, he and I spent a good day in the NICU with Isaac today – he was breathing much better today than he was when he had that episode of difficult breathing while we were there last night. And it was really nice to be able to hold him a lot today and feel like he was doing better. We spent the whole day there with him, and later on in the afternoon the doctor who performed his surgery the other day came to talk to us and answer any questions we had.
Last night when Isaac had the trouble with his breathing, we knew that it must be kind of serious, since there were all of a sudden 8 medical staff in the room. But it didn’t take them too long to give him the oral airway, which resolved the problem pretty quickly and relaxed his breathing a lot.
So, when the doctor came in to talk to us this afternoon and he called what happened to Isaac last night an “acute life threatening event” we were both a little shocked. We knew it was serious, but we had no idea it was that serious. The doctor said that the problem last night was not directly related to the surgery or the anesthesia, and said that their best diagnosis was that the problem last night was caused by reflux, especially since it happened shortly after the nurse tried to feed Isaac a little milk yesterday. We knew that they had given him two different medicines and they said that those would aggressively treat the reflux. When I asked the doctor if the reflux was going to be an ongoing problem for Isaac, I was also surprised to hear that he will continue on both of the reflux medications for 18 months to make sure that he doesn’t have another similar episode like last night.
We asked if the doctor had any idea when Isaac might be ready to go home, (since the original estimate had been that he might be ready to go home today or tomorrow, but we could tell he wasn’t ready for that). The doctor would not give us an estimate, since he said that he couldn’t predict hot Isaac would do in the future. But he did give us some idea when he said that they plan to wait until Isaac is off of all the tubes, the oral airway, the IV, the monitors, and until he is nursing like normal, and then watch him for 48 to 72 hours to make sure that he can do well without any of those extra things before they will send him home. So, we don’t really know how long it will be, but I would guess maybe that it will be another week before we can bring him home from the NICU, as long as there are no more setbacks.
So, it was good to get some more information about his condition, and although we’d love to have him home with us now, we are glad that they are going to be thorough and make sure that he is fully recovered before letting him go. We are glad that he seems to be doing so much better today, and please keep him in your prayers so that he will not have any more setbacks and he can recover quickly. Thank you!
As Michael mentioned earlier, he and I spent a good day in the NICU with Isaac today – he was breathing much better today than he was when he had that episode of difficult breathing while we were there last night. And it was really nice to be able to hold him a lot today and feel like he was doing better. We spent the whole day there with him, and later on in the afternoon the doctor who performed his surgery the other day came to talk to us and answer any questions we had.
Last night when Isaac had the trouble with his breathing, we knew that it must be kind of serious, since there were all of a sudden 8 medical staff in the room. But it didn’t take them too long to give him the oral airway, which resolved the problem pretty quickly and relaxed his breathing a lot.
So, when the doctor came in to talk to us this afternoon and he called what happened to Isaac last night an “acute life threatening event” we were both a little shocked. We knew it was serious, but we had no idea it was that serious. The doctor said that the problem last night was not directly related to the surgery or the anesthesia, and said that their best diagnosis was that the problem last night was caused by reflux, especially since it happened shortly after the nurse tried to feed Isaac a little milk yesterday. We knew that they had given him two different medicines and they said that those would aggressively treat the reflux. When I asked the doctor if the reflux was going to be an ongoing problem for Isaac, I was also surprised to hear that he will continue on both of the reflux medications for 18 months to make sure that he doesn’t have another similar episode like last night.
We asked if the doctor had any idea when Isaac might be ready to go home, (since the original estimate had been that he might be ready to go home today or tomorrow, but we could tell he wasn’t ready for that). The doctor would not give us an estimate, since he said that he couldn’t predict hot Isaac would do in the future. But he did give us some idea when he said that they plan to wait until Isaac is off of all the tubes, the oral airway, the IV, the monitors, and until he is nursing like normal, and then watch him for 48 to 72 hours to make sure that he can do well without any of those extra things before they will send him home. So, we don’t really know how long it will be, but I would guess maybe that it will be another week before we can bring him home from the NICU, as long as there are no more setbacks.
So, it was good to get some more information about his condition, and although we’d love to have him home with us now, we are glad that they are going to be thorough and make sure that he is fully recovered before letting him go. We are glad that he seems to be doing so much better today, and please keep him in your prayers so that he will not have any more setbacks and he can recover quickly. Thank you!
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Stephanie
Still in the NICU
Well, it is Sunday afternoon and Steph and I have spent the morning at the hospital in the NICU with Isaac. He seems to be recovering really well from his surgery. The ENT (ear, nose, and throat) doctors operated on his nose on Friday to remove excess bone that was blocking the nasal passageways and making it difficult for him to breathe. Before the surgery he had an MRI of his brain. The condition he has, called Congenital Pyriform Aperture Stenosis, can sometimes be associated with other developmental problems, especially in the brain. Some of those abnormalities include having only one central incisor instead of two, Holoprosencephaly (which is when the brain doesn’t split properly into the right and left halves but stays one big piece), and problems with parts of the brain called the hypothalamus and the pituitary (which controls release of several hormones, including thyroid hormone, growth hormone, and Cortisol – which helps to control blood pressure – and others). The MRI of the brain came back essentially negative, so the doctors are going to run a few blood tests probably tomorrow, after Isaac has had a few days to recover from the surgery.
Congenital Pyriform Aperture Stenosis is a recently described condition that occurs before birth. It is a pretty rare condition, though there is not an exact number of how often it occurs, since it has only been described since 1988. There is another condition, called Choanal Atresia, which is similar to what Isaac has, but a little worse, since in this condition the entire nasal passage is blocked off and the baby can’t breathe through their nose at all, so they need surgery right away. The doctors think that there may have been many more babies before 1988 that had what Isaac has, but because the CT scanning technology wasn’t as good back then, it was not detected properly and was misdiagnosed as the Choanal Atresia, and treated with the same kind of surgery.
As part of the MRI study and surgery, Isaac had to have a breathing tube put down his throat (intubated), which Steph and I were able to watch Friday morning. I have seen many times when people had to be intubated, but it is a lot different when it is being done on your own child, especially at a teaching hospital, where they let the resident try first, and then the fellow, and then the attending doctor if the others are unsuccessful (which happened in Isaac’s case). According to the doctors, Isaac’s surgery went very well, and he did well overnight on Friday. Steph’s mom had arrived in town Thursday night and spent all day Friday with the other boys, since we had been in the hospital all day for Isaac’s surgery, so we thought it would be good to spend the night with our other children. There was a ward Halloween party, so we took them to that, with Kolby dressed as Tigger, Eli as a dinosaur, and Camden as a lion. They were so cute and had so much fun trick or treating and getting so much candy. It was nice to get them out of the house and spend some time together.
We spent the good part of Saturday morning cleaning up the house and then Steph and her mom went grocery shopping since the cupboards were bare after us being gone for the few days at the hospital. Isaac got the breathing tube out in the morning, so once they got home, we got the boys all cleaned up and took them over to the hospital to meet their new baby brother. We weren’t sure what to expect, and the boys ended up having a hard time, since the NICU is not an ideal place for loud, active little boys who like to touch everything they see and don’t like to sit still for more than 2 seconds (although for the first 10 minutes or so while they were first meeting Isaac, Kolby and Eli at least were good and well behaved and enjoyed seeing him and asking questions about how long it would be until he came home). The nurses had tried to feed Isaac some of Steph’s milk that we have saved for him just before we got there, and they said he seemed to enjoy it, but by the time the boys were done visiting with him, he was struggling quite a bit to breathe. The nurse tried to turn him and suction in his nose and mouth to see if that would help, but his tongue kept sticking to the roof of his mouth, blocking his airway, so they finally had to call the ENT doctors to come take a look. We had to get the other boys some food, so the ENT doctor called us later and said that after looking down Isaac’s throat with a scope, it seems that he had some acid reflux after getting the milk. She said this is common in babies, but with the other stresses of the surgery, having a tube down his throat, swelling in his lip, and tubes in his nose, the combination probably put him over the top and caused the throat to close. They gave him some morphine, put an oral airway in (a piece of plastic that is curved and rests just over the tongue to keep it from falling back into the throat and blocking the airway) and started Isaac on some acid blocking medicines. He seemed to calm down a lot after that, especially with the oral airway, so they have left that in for now to let him continue to wake up from the anesthesia and recover from the surgery. He is getting nutrition through an IV and the doctors said we will wait until tomorrow before trying to feed him again.
This morning Stephanie and I each got to hold him for a long time and he was very happy. He even tried to open his eyes a few times for us, though overall he is still very sleepy, and rightly so. And it was really nice to finally actually be able to sit down and hold him like a normal baby. The doctors had originally hoped (very optimistically) that Isaac would be able to go home tomorrow, but given how things have gone a little slower so far, it will probably be a few more days in the NICU, although the doctors still think he is healing nicely and will make a full recovery in the next few days.
Congenital Pyriform Aperture Stenosis is a recently described condition that occurs before birth. It is a pretty rare condition, though there is not an exact number of how often it occurs, since it has only been described since 1988. There is another condition, called Choanal Atresia, which is similar to what Isaac has, but a little worse, since in this condition the entire nasal passage is blocked off and the baby can’t breathe through their nose at all, so they need surgery right away. The doctors think that there may have been many more babies before 1988 that had what Isaac has, but because the CT scanning technology wasn’t as good back then, it was not detected properly and was misdiagnosed as the Choanal Atresia, and treated with the same kind of surgery.
As part of the MRI study and surgery, Isaac had to have a breathing tube put down his throat (intubated), which Steph and I were able to watch Friday morning. I have seen many times when people had to be intubated, but it is a lot different when it is being done on your own child, especially at a teaching hospital, where they let the resident try first, and then the fellow, and then the attending doctor if the others are unsuccessful (which happened in Isaac’s case). According to the doctors, Isaac’s surgery went very well, and he did well overnight on Friday. Steph’s mom had arrived in town Thursday night and spent all day Friday with the other boys, since we had been in the hospital all day for Isaac’s surgery, so we thought it would be good to spend the night with our other children. There was a ward Halloween party, so we took them to that, with Kolby dressed as Tigger, Eli as a dinosaur, and Camden as a lion. They were so cute and had so much fun trick or treating and getting so much candy. It was nice to get them out of the house and spend some time together.
We spent the good part of Saturday morning cleaning up the house and then Steph and her mom went grocery shopping since the cupboards were bare after us being gone for the few days at the hospital. Isaac got the breathing tube out in the morning, so once they got home, we got the boys all cleaned up and took them over to the hospital to meet their new baby brother. We weren’t sure what to expect, and the boys ended up having a hard time, since the NICU is not an ideal place for loud, active little boys who like to touch everything they see and don’t like to sit still for more than 2 seconds (although for the first 10 minutes or so while they were first meeting Isaac, Kolby and Eli at least were good and well behaved and enjoyed seeing him and asking questions about how long it would be until he came home). The nurses had tried to feed Isaac some of Steph’s milk that we have saved for him just before we got there, and they said he seemed to enjoy it, but by the time the boys were done visiting with him, he was struggling quite a bit to breathe. The nurse tried to turn him and suction in his nose and mouth to see if that would help, but his tongue kept sticking to the roof of his mouth, blocking his airway, so they finally had to call the ENT doctors to come take a look. We had to get the other boys some food, so the ENT doctor called us later and said that after looking down Isaac’s throat with a scope, it seems that he had some acid reflux after getting the milk. She said this is common in babies, but with the other stresses of the surgery, having a tube down his throat, swelling in his lip, and tubes in his nose, the combination probably put him over the top and caused the throat to close. They gave him some morphine, put an oral airway in (a piece of plastic that is curved and rests just over the tongue to keep it from falling back into the throat and blocking the airway) and started Isaac on some acid blocking medicines. He seemed to calm down a lot after that, especially with the oral airway, so they have left that in for now to let him continue to wake up from the anesthesia and recover from the surgery. He is getting nutrition through an IV and the doctors said we will wait until tomorrow before trying to feed him again.
This morning Stephanie and I each got to hold him for a long time and he was very happy. He even tried to open his eyes a few times for us, though overall he is still very sleepy, and rightly so. And it was really nice to finally actually be able to sit down and hold him like a normal baby. The doctors had originally hoped (very optimistically) that Isaac would be able to go home tomorrow, but given how things have gone a little slower so far, it will probably be a few more days in the NICU, although the doctors still think he is healing nicely and will make a full recovery in the next few days.
26 October 2007
Some More Photos of Isaac
Mommy and Isaac after he was born on Tuesday night, 23 October 2007.
He looks more chubby in this photo than in real life, but I
liked the little smile and you can see his dimple here.
He looked so small when he grabbed my ring finger with his little fingers.
Isaac takes a rest in Daddy's arms.
Sweet dreams!
Isaac visits the NICU (Neonatal Intensive Care Unit).
Isaac with an oxygen hood over his head to help him breath easier.
Isaac after his surgery today. They intubated (put the breathing tube down his throat) for an MRI and the surgery they did today. During the surgery, they made an incision under his upper lip to remove some bone from the nasal passage, and then they inserted tubes in his nose. So his lip is pretty swollen, and his nose is a little swollen too. But the surgery was successful and it seems like things are going just as planned. He should have the tube removed from his mouth either tonight or tomorrow morning, and then he can try eating. They said that if all goes as expected, he should be able to come home with us in 2 or 3 more days.
25 October 2007
Baby Isaac Has Arrived!
On Tuesday I started having contractions in the morning. I had them irregularly all day, and by that evening I was having them every 7 to 10 minutes. Michael and the boys and I went and ran a couple of errands, and when we got home around 7:00pm I started having the contractions about every 2 or 3 minutes, so Michael put the boys to bed and we called a friend to come stay with them while we went to the hospital. We arrived at the hospital about 8:30pm, and I was dilated to a 7. I got the epidural, which worked just right this time, and then they just had me wait. I was strep B positive, which means that they try to give the mom antibiotics for 4 hours before the baby is born, so they didn’t want to break my water because they were trying to wait the 4 hours. I got the first dose of the antibiotics, but my water broke on its own before they could give me the second dose. After my water broke, he came really quickly. I pushed once and his head came out, and I pushed a second time and he was delivered. That was definitely the quickest delivery yet!
Isaac Steven Bradshaw was born at 11:43pm on October 23rd, seven days before his due date. Michael told me later that he had the chord wrapped around his neck when he came out, but I didn’t even know that. I held him, and then they checked his weight and height and cleaned him up a little bit. He was 8 lbs 13 oz and 21 inches long, so he was our second smallest baby – Camden was 9 lbs 8 oz, Kolby was 9 lbs 1 oz, Isaac was 8 lbs 13 oz, and Eli was 8 lbs 8 oz. (I’m rather glad he wasn’t a 10-pounder).
He got a chance to nurse and we held him and called all the family members, and then we moved to our room. They took him to the nursery for a little bit, and the nurse must have noticed how tired Michael and I looked, because he was all bathed and dressed when they brought him back to us. By then it was quite late, and we got about 4 hours of sleep before morning. Isaac was a noisy breather – kind of making little snorting sounds every once in a while and breathing loudly, but he slept well that entire time. I tried to nurse him a few times the next morning, and he didn’t really latch on well at all. A little while later we let the nurse know that it seemed like he was having a little trouble breathing, and she said that she would take him to the nursery to give him some saline drops and use the bulb to suction his nose. We thought that would be a good thing to do so that he wasn’t so stuffy and he could then nurse without any trouble.
After a little while, we were informed that the bulb had not helped, and they had talked to the pediatrician who had ordered a few tests to check on why he was having trouble breathing. A chest x-ray didn’t show anything abnormal and they put a tube down his throat, but it went down fine, so they didn’t suspect any problems with his throat. They said that they tried to pass a tube through his nose, but couldn’t – so they suspected some kind of blockage. Some NICU doctors came and said they were taking him to the NICU and they were going to see if they could figure out what the problem was.
So, when we went down to the NICU a little while later to see him, they told us that they thought it might be a dermoid cyst (a blockage of dead skin that would have to be removed in surgery, but which was not any type of cancer) in the nasal area which was making it hard for him to breath through his nose, but that they would have to wait until they got a CT scan to see if their hypothesis was correct. Later that night we returned to the NICU and a resident showed us the CT scan. It did not show a cyst, but just that the nasal passages looked more narrow than they should be. We had to wait until this morning until we talked to the ENT (ear, nose, throat) doctor to find out his diagnosis and plans for treatment.
So, today the ENT told us that Isaac has a pretty uncommon condition called Congenital Perform Aperture Stenosis, which just means that the nasal passage is really narrow. They said there is no real reason that this happened, it is not genetic – it just happens to be the way that his bones formed, and they didn’t separate as much as they should have. I guess this is a pretty uncommon condition. But they made it sound like it isn’t going to be a serious problem, and he shouldn’t have any long-term effects from it.
Isaac’s scan showed that the bones in this area were a little closer together, and on one side the soft tissue looked like it was really close together. This is a pretty rare condition, and there is not much information about it online. We did find a few articles that mentioned that babies with this condition could also have one large tooth in the middle, instead of two top teeth in front – but Isaac’s scan showed normal teeth. Other articles mentioned a triangular palette associated with this condition, but we haven’t noticed anything like this in Isaac. In fact, except for the breathing problems, he seems to be doing just great, and he looks like everything else about him is just how it should be. The doctors told us that other articles say sometimes this condition is associated with problems with the hypothalamus and pituitary, two organs in the brain that control many of the hormones needed for growth and development, like thyroid and growth hormone. They want to do an MRI tomorrow while he is already sedated for the surgery, just to make sure that everything looks ok. The doctors seem to be doing everything possible to help us out here.
They are going to do surgery to correct this tomorrow morning. They will remove some of the bone and put in two tubes to make the passages stay open, and then the tubes will be surgically removed in about 3 weeks. They will do this all through an incision under his upper lip, so it won’t leave any scars. I am pumping now, and they hope that he will be able to start nursing normally after his surgery. And they said that as long as everything goes well, he will be able to go home from the NICU two or three days after his surgery. We are not allowed to sleep in the NICU and I got discharged from the hospital today, so we will be home tonight, and then I will probably return to be with him in the morning. My mom is arriving tonight, so that will be helpful to have her here. (By the way, my parents were able to return and see their house last night since the evacuation for the wildfires down in San Diego, and their house was not damaged by the fires at all. A couple of the houses up the hill from them were burned, and the fire burned down the hill to within 50 yards of my parents’ property, but their house and yard were not touched). So, thank you to all of you who have helped out with watching the boys for us this week. And thanks to everyone for your prayers and support. We really appreciate it! I’d better head back down to Isaac’s room now to be with him.
I will post photos of Isaac once I’ve had a chance to get them off of our camera on our home computer. But he’s really cute – he has light brown hair that looks kind of golden in the light, just the same color as Camden’s was when he was born, little round ears, dark eyes, and it looks like he’ll probably have a dimple on the left side. Michael thinks he has the Bradshaw nose. And Tyce Kearl said that he definitely looks like a Bradshaw boy. He is long – he looks tall and he has cute long feet and long toes. And he is strong – when they rolled him on his tummy yesterday, he was lifting his head up over and over. I can’t wait to take him home with us!
Isaac Steven Bradshaw was born at 11:43pm on October 23rd, seven days before his due date. Michael told me later that he had the chord wrapped around his neck when he came out, but I didn’t even know that. I held him, and then they checked his weight and height and cleaned him up a little bit. He was 8 lbs 13 oz and 21 inches long, so he was our second smallest baby – Camden was 9 lbs 8 oz, Kolby was 9 lbs 1 oz, Isaac was 8 lbs 13 oz, and Eli was 8 lbs 8 oz. (I’m rather glad he wasn’t a 10-pounder).
He got a chance to nurse and we held him and called all the family members, and then we moved to our room. They took him to the nursery for a little bit, and the nurse must have noticed how tired Michael and I looked, because he was all bathed and dressed when they brought him back to us. By then it was quite late, and we got about 4 hours of sleep before morning. Isaac was a noisy breather – kind of making little snorting sounds every once in a while and breathing loudly, but he slept well that entire time. I tried to nurse him a few times the next morning, and he didn’t really latch on well at all. A little while later we let the nurse know that it seemed like he was having a little trouble breathing, and she said that she would take him to the nursery to give him some saline drops and use the bulb to suction his nose. We thought that would be a good thing to do so that he wasn’t so stuffy and he could then nurse without any trouble.
After a little while, we were informed that the bulb had not helped, and they had talked to the pediatrician who had ordered a few tests to check on why he was having trouble breathing. A chest x-ray didn’t show anything abnormal and they put a tube down his throat, but it went down fine, so they didn’t suspect any problems with his throat. They said that they tried to pass a tube through his nose, but couldn’t – so they suspected some kind of blockage. Some NICU doctors came and said they were taking him to the NICU and they were going to see if they could figure out what the problem was.
So, when we went down to the NICU a little while later to see him, they told us that they thought it might be a dermoid cyst (a blockage of dead skin that would have to be removed in surgery, but which was not any type of cancer) in the nasal area which was making it hard for him to breath through his nose, but that they would have to wait until they got a CT scan to see if their hypothesis was correct. Later that night we returned to the NICU and a resident showed us the CT scan. It did not show a cyst, but just that the nasal passages looked more narrow than they should be. We had to wait until this morning until we talked to the ENT (ear, nose, throat) doctor to find out his diagnosis and plans for treatment.
So, today the ENT told us that Isaac has a pretty uncommon condition called Congenital Perform Aperture Stenosis, which just means that the nasal passage is really narrow. They said there is no real reason that this happened, it is not genetic – it just happens to be the way that his bones formed, and they didn’t separate as much as they should have. I guess this is a pretty uncommon condition. But they made it sound like it isn’t going to be a serious problem, and he shouldn’t have any long-term effects from it.
Isaac’s scan showed that the bones in this area were a little closer together, and on one side the soft tissue looked like it was really close together. This is a pretty rare condition, and there is not much information about it online. We did find a few articles that mentioned that babies with this condition could also have one large tooth in the middle, instead of two top teeth in front – but Isaac’s scan showed normal teeth. Other articles mentioned a triangular palette associated with this condition, but we haven’t noticed anything like this in Isaac. In fact, except for the breathing problems, he seems to be doing just great, and he looks like everything else about him is just how it should be. The doctors told us that other articles say sometimes this condition is associated with problems with the hypothalamus and pituitary, two organs in the brain that control many of the hormones needed for growth and development, like thyroid and growth hormone. They want to do an MRI tomorrow while he is already sedated for the surgery, just to make sure that everything looks ok. The doctors seem to be doing everything possible to help us out here.
They are going to do surgery to correct this tomorrow morning. They will remove some of the bone and put in two tubes to make the passages stay open, and then the tubes will be surgically removed in about 3 weeks. They will do this all through an incision under his upper lip, so it won’t leave any scars. I am pumping now, and they hope that he will be able to start nursing normally after his surgery. And they said that as long as everything goes well, he will be able to go home from the NICU two or three days after his surgery. We are not allowed to sleep in the NICU and I got discharged from the hospital today, so we will be home tonight, and then I will probably return to be with him in the morning. My mom is arriving tonight, so that will be helpful to have her here. (By the way, my parents were able to return and see their house last night since the evacuation for the wildfires down in San Diego, and their house was not damaged by the fires at all. A couple of the houses up the hill from them were burned, and the fire burned down the hill to within 50 yards of my parents’ property, but their house and yard were not touched). So, thank you to all of you who have helped out with watching the boys for us this week. And thanks to everyone for your prayers and support. We really appreciate it! I’d better head back down to Isaac’s room now to be with him.
I will post photos of Isaac once I’ve had a chance to get them off of our camera on our home computer. But he’s really cute – he has light brown hair that looks kind of golden in the light, just the same color as Camden’s was when he was born, little round ears, dark eyes, and it looks like he’ll probably have a dimple on the left side. Michael thinks he has the Bradshaw nose. And Tyce Kearl said that he definitely looks like a Bradshaw boy. He is long – he looks tall and he has cute long feet and long toes. And he is strong – when they rolled him on his tummy yesterday, he was lifting his head up over and over. I can’t wait to take him home with us!
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