We are officially in the homestretch of our stay in the NICU! There are newborn diapers, bottles, and formula at my house, and Nick is bottle feeding so well that he was able to have his feeding tube removed yesterday. The only thing that will be keeping us here will be the bradycardia events-he has to go five consecutive days without any before he is released. He is still having 1-3 per day and had three this morning, but we are close enough to talk about car seats and follow up appointments and Life After the NICU.
Like everything else about the NICU, the thought of bringing him home is highly emotional. I think that when we do finally take Nick home, it will be a long time before I completely process this experience and understand the extent with which it has affected me. The emotions I am feeling include:
1. Guilt- This is the one emotion I’ve felt more strongly than the rest. One of the reasons why the first week after he was born was without question the hardest thing I have been through was I felt so responsible for him being born so prematurely. I *know* I didn’t intentionally do anything wrong, but it is a fact that he was born 10 weeks early because my body failed to keep him safe. According to my trusty google research, placental abruptions happen in 1% of all pregnancies, and are usually caused by obesity, smoking/drug abuse, or some type of trauma, like a car accident. None of that applies to me. I’ve never had any trouble getting pregnant, I’ve never miscarried, my two previous babies were full term with completely textbook pregnancies. I’ve never done drugs, I don’t smoke, and I’ve never drank while pregnant. I took my prenatal vitamins, kept all my appointments with my OB, and I only just turned 29. My diet isn’t perfect and I don’t exercise as much as I would like during the school year, but I think I am healthier than most women my age. I know hospitals literally exist because healthy people get sick out of the blue, but still, I am too much of a control freak to accept that “sometimes these things just happen.” In the days after Nick was born, when I was still vulnerable from his birth, it was hard not to blame myself and feel as though I had failed on a massive scale. Not being able to breast feed didn’t help. I had made my peace with having to formula feed my previous two babies, but with Nick being a preemie with a digestive system too immature for formula, there was no arguement that breast milk was better than formula. Relying on donor milk was just another reminder of how my body had failed my son.
This type of guilt has gotten better over time, but the closer we get to going home, I have more and more guilt that I will be bringing home a healthy baby when so many moms who have placental abruptions never bring their babies home from the hospital. I think this will be the most challenging emotion to accept, and the one that will have the greatest impact on my post-NICU life. My husband says we should just be thankful that our situation has turned out as well as it has and move on, but I don’t think that will be enough for me. My mind keeps circling back to the idea that we got lucky when, for no reason other than bad luck, so many women did not. That is this week’s reason why I cry on the way home from the hospital, and this feeling leads me to...
2. Gratitude- And by that I mean overwhelming, overpowering, gratitude for the doctors and nurses caring for my child. At first, I was so devastated by how little I could care for Nick, but over time I came to see what a blessing it is that I get to witness so many good people saving babies, caring for their mothers, and helping the most fragile infants become strong enough to go home and begin their lives with the families every day. Having to be so dependent on strangers to care for your child, and then seeing how it is done with such love and compassion is another thing that has made this experience life changing. I sent my OBs cupcakes after Nick was born and plan to do something to thank Nick’s doctor and nurses, but there is no real way I could ever thank them or articulate how important they are to me. I need to and want to pay it forward, to make as positive an impact on someone’s life as they have in mine.
3. Anxiety-Another biggie in the world of preemies. I trust Nick’s doctor and nurses completely, and I know they will not send him home if there is any doubt he isn’t strong enough, but it is nerve wracking to think we won’t have an experienced medical professional steps away from us who can come running the second something goes wrong. It feels like I’m a first time mom again, and I know I will wake up to check on him during the night and that the first times I feed him at home will be stressful. But again, this goes back to how we completely depend on Nick’s medical team to know when he really is strong enough to go home, and how we have to trust that they are acting in his best interest.
4. Sadness- I don’t know if sadness is the right word, and I don’t know if I can articulate this well enough, but part of me feels a mixture of sadness,mental exhaustion, and relief. This whole pregnancy has been such an ordeal, and ever since I had my first bleeding episode at the beginning of October, Nick and his well-being is a stressor I have gotten use to living with. I still can’t imahine what life will be like when I’m not constantly going back and forth from the hospital and I can hold my baby without having to adjust the wires that he is hooked up to. It’s so hard to imagine that one day he will be leaping off couches and running wild like my two-year-old does, but I know those days are coming, which leads me to...
5. Joy- I know I don’t need to write this, but I CAN’T WAIT TO BRING MY BABY HOME. Graham is too young to understand what is happening, but Annabelle asks me every day when Nick is coming home. I cannot wait to see her finally get to hold him (another thought that has me crying), I can’t wait to introduce him to the rest of his extended family, and I can’t wait to have normal, routine, doctor-free days with him. We’re not quite ready to bring him home yet, but we’re close.
Tuesday, March 27, 2018
Sunday, March 25, 2018
Physician's Week
Having a child in the NICU is a life changing experience. As cliche and overused as that phrase is, the ordeal of my pregnancy with Nick and all the emotions I’ve felt so intensely over the past few weeks have changed my perspective on a lot of things. One of which is my relationship with and appreciation for the doctors that cared for Nick and I.
Prior to getting pregnant with Nick, my relationship with doctors have been very generic: I saw my family doctor when I was sick, he would write me a prescription, and that was that until next time. Cory was still in the Army when we had Annabelle and Graham, so we had different OBs in different states for their deliveries. I imagine there was nothing noteworthy from a doctor’s perspective about my care leading up to their deliveries, which were both so easy and laid back that when I was pushing with Annabelle, the OB was having one of the nurses text her son on her phone for her and read aloud his replies (he was on his honeymoon, and I pushed for an hour and a half with Belle, so it wasn't totally strange.)
In November and December, when I was in the hospital, I think I was too busy to really process how at risk my pregnancy was and how badly it could have ended. Yes, I was having these freak bleeding episodes that no one could really explain, but I had sub plans to finish and child care to coordinate, and, because the bleeding always eventually stopped, I more or less brushed off the episodes as more annoyances than true threats to Nick's well being. Also, up until about 24 hours before Nick was born, since there was no way to predict when the bleeding would start again, my treatment plan basically consisted of Waiting and Seeing what my body would do next, along with bed rest. After I was hospitalized in December, when my pregnancy was more or less officially flagged as being high risk, I saw either my primary OB, the high risk doctor, or had an ultra sound every week. When I was in the hospital, I was seen by whatever OB was on call that day during their rounds, so we got to know everyone at the practice pretty well by the time Nick was born.
Though it was frustrating at times that my doctors couldn't offer a clear explanation or present an aggressive treatment plan other than Wait and See, I took it as a good sign that my pregnancy must not be too complex since they weren't keeping me indefinitely in the hospital (which was brought up when I was hospitalized in December.) After our appointment with my MFM specialist the day before Nick was born, I could tell our luck was running out, fast. Even though I knew the pain I had in my lower back two days before was a bad sign (hospital bed rest = lots of time to google symptoms,) I was expecting to be told to continue Waiting and Seeing. Instead, we started talking about blood clots and side effects of babies born 10 weeks prematurely and the pros and cons of taking out the baby right then and there. The next morning, after a night of heavy bleeding and then a dramatic increase, it was ultimately our MFM doctor who made the call to move forward with the c-section , which was performed by the doctor on call that day.
In all of my life, I have never been in a position where I was as vulnerable as I was in those 24 hours. I had to put all of my faith in these doctors, and trust completely that they were making the right call and had the best interests of my child at heart. It is a humbling position to be in-to know that my body could no longer keep my child safe, and that if it wasn't for my doctors doing exactly what they did that day, things could have ended so tragically for us.
A side effect of spending hours at a time holding Nick in the NICU is I have had plenty of time to research placental abruption. I read about women who have concealed abruptions, where the placenta detaches from the uterus but the bleeding is contained, so by the time they realize something is wrong it is already too late. I’ve read the blogs of women who have lost a child to placental abruptions, and, while my blog shares the milestones and achievements Nick makes on his way out of the NICU, these women write in memory of the child they will never get the chance to raise. To know what could have happened if our doctors hadn't decided to keep me in the hospital so I would be steps away from the OR in case an emergency situation were to happen, if they hadn't known to give Nick the steroids to help his lungs develop, that I could easily be one of those mothers who never bring their baby home from the hospital is a humbling, emotional, and life changing reality. Maybe my delivery wasn't as dramatic to them as it was for me. I'm sure they have seen placental abruption cases before, and I certainly never thought when I got pregnant with Nick that I would be thanking God every day for my OB. This experience inspires me to be a better teacher, and to be as great of a force for good in someone's life as our doctors are in mine.
I cannot imagine what it is like to be an OB, to see the worst kind of grief so regularly, but I don't want my blog to be totally gloom and doom and too dramatic. So on a happy note, this week the flu restrictions were lifted for everyone over 12. This means there have been more extended family in the NICU. Part of me feels sad to think that the babies here have to be kept away from the families that love them so fiercely, but one day they will go home. It's upsetting and beautiful at the same time to see the other mothers sleeping on the couches in their child's room, who are steadfastly seeing their child through the ups and downs of the NICU, and are waiting for the day they are finally allowed to bring their baby home and put the NICU firmly in their past. These women who had as dramatic a birth experience as I did, their families, and my family, owe the future of their child to our OBs. I hope that one day I can pay this beautiful gift forward.
Prior to getting pregnant with Nick, my relationship with doctors have been very generic: I saw my family doctor when I was sick, he would write me a prescription, and that was that until next time. Cory was still in the Army when we had Annabelle and Graham, so we had different OBs in different states for their deliveries. I imagine there was nothing noteworthy from a doctor’s perspective about my care leading up to their deliveries, which were both so easy and laid back that when I was pushing with Annabelle, the OB was having one of the nurses text her son on her phone for her and read aloud his replies (he was on his honeymoon, and I pushed for an hour and a half with Belle, so it wasn't totally strange.)
In November and December, when I was in the hospital, I think I was too busy to really process how at risk my pregnancy was and how badly it could have ended. Yes, I was having these freak bleeding episodes that no one could really explain, but I had sub plans to finish and child care to coordinate, and, because the bleeding always eventually stopped, I more or less brushed off the episodes as more annoyances than true threats to Nick's well being. Also, up until about 24 hours before Nick was born, since there was no way to predict when the bleeding would start again, my treatment plan basically consisted of Waiting and Seeing what my body would do next, along with bed rest. After I was hospitalized in December, when my pregnancy was more or less officially flagged as being high risk, I saw either my primary OB, the high risk doctor, or had an ultra sound every week. When I was in the hospital, I was seen by whatever OB was on call that day during their rounds, so we got to know everyone at the practice pretty well by the time Nick was born.
Though it was frustrating at times that my doctors couldn't offer a clear explanation or present an aggressive treatment plan other than Wait and See, I took it as a good sign that my pregnancy must not be too complex since they weren't keeping me indefinitely in the hospital (which was brought up when I was hospitalized in December.) After our appointment with my MFM specialist the day before Nick was born, I could tell our luck was running out, fast. Even though I knew the pain I had in my lower back two days before was a bad sign (hospital bed rest = lots of time to google symptoms,) I was expecting to be told to continue Waiting and Seeing. Instead, we started talking about blood clots and side effects of babies born 10 weeks prematurely and the pros and cons of taking out the baby right then and there. The next morning, after a night of heavy bleeding and then a dramatic increase, it was ultimately our MFM doctor who made the call to move forward with the c-section , which was performed by the doctor on call that day.
In all of my life, I have never been in a position where I was as vulnerable as I was in those 24 hours. I had to put all of my faith in these doctors, and trust completely that they were making the right call and had the best interests of my child at heart. It is a humbling position to be in-to know that my body could no longer keep my child safe, and that if it wasn't for my doctors doing exactly what they did that day, things could have ended so tragically for us.
A side effect of spending hours at a time holding Nick in the NICU is I have had plenty of time to research placental abruption. I read about women who have concealed abruptions, where the placenta detaches from the uterus but the bleeding is contained, so by the time they realize something is wrong it is already too late. I’ve read the blogs of women who have lost a child to placental abruptions, and, while my blog shares the milestones and achievements Nick makes on his way out of the NICU, these women write in memory of the child they will never get the chance to raise. To know what could have happened if our doctors hadn't decided to keep me in the hospital so I would be steps away from the OR in case an emergency situation were to happen, if they hadn't known to give Nick the steroids to help his lungs develop, that I could easily be one of those mothers who never bring their baby home from the hospital is a humbling, emotional, and life changing reality. Maybe my delivery wasn't as dramatic to them as it was for me. I'm sure they have seen placental abruption cases before, and I certainly never thought when I got pregnant with Nick that I would be thanking God every day for my OB. This experience inspires me to be a better teacher, and to be as great of a force for good in someone's life as our doctors are in mine.
I cannot imagine what it is like to be an OB, to see the worst kind of grief so regularly, but I don't want my blog to be totally gloom and doom and too dramatic. So on a happy note, this week the flu restrictions were lifted for everyone over 12. This means there have been more extended family in the NICU. Part of me feels sad to think that the babies here have to be kept away from the families that love them so fiercely, but one day they will go home. It's upsetting and beautiful at the same time to see the other mothers sleeping on the couches in their child's room, who are steadfastly seeing their child through the ups and downs of the NICU, and are waiting for the day they are finally allowed to bring their baby home and put the NICU firmly in their past. These women who had as dramatic a birth experience as I did, their families, and my family, owe the future of their child to our OBs. I hope that one day I can pay this beautiful gift forward.
Thursday, March 22, 2018
Feeding Update
The doctor wasn’t kidding when he told us getting preemies to drinking from a bottle is tricky business! It is definitely a one step forward, two steps back situation. When I feed him, I can tell Nick is getting better with coordinating his breathing and swallowing, and doesn’t seem as panicked as he did last week when eating. He is now being offered a bottle twice per 12 hour shift, and is becoming more and more alert when it is time for him to eat. He is definitely growing and looking more and more like a full term newborn these days, plump cheeks and all 💙
So, that is the awesome progress Nick has made this week, but it has came with drawbacks. He has started having more brady’s that require stimulation, and had four last night alone,, which is the most he’s had on one shift since he was a newborn. The nurses think it is caused by a combination of the exhaustion that comes from trying to drink from the bottle, a system that is still premature and not quite ready to regulate itself, and because he was circumcised on Wednesday. He started on regular preemie formula last week, but it was causing him to spit up and be constipated (which triggered more bradys), so he is back to being on alimentum formula for the time being. Also, the hydrocele in his right testicle has gotten larger, so they will continue to keep an eye on it and let it run its course unless he starts to show signs of a hernia.
Even though it is frustrating that learning to bottle feed is such a slow process, everything Nick is dealing with are standard, run of the mill preemie issues that any 30 weeker would experience. The doctors tell me every day how healthy he is, and now that we have gotten to know his medical team better and have settled into a routine, things have honestly become much easier. Annabelle turns 5 on Saturday, and originally I was hoping he would be home in time for her birthday, or at least Easter, but it looks like we will be stuck here until April. But, now that we are so close to April, the flu restrictions have been lifted for everyone 12 and over, so my sisters will be able to meet him this week😊 Thank you for reading and for your continued prayers!
So, that is the awesome progress Nick has made this week, but it has came with drawbacks. He has started having more brady’s that require stimulation, and had four last night alone,, which is the most he’s had on one shift since he was a newborn. The nurses think it is caused by a combination of the exhaustion that comes from trying to drink from the bottle, a system that is still premature and not quite ready to regulate itself, and because he was circumcised on Wednesday. He started on regular preemie formula last week, but it was causing him to spit up and be constipated (which triggered more bradys), so he is back to being on alimentum formula for the time being. Also, the hydrocele in his right testicle has gotten larger, so they will continue to keep an eye on it and let it run its course unless he starts to show signs of a hernia.
Even though it is frustrating that learning to bottle feed is such a slow process, everything Nick is dealing with are standard, run of the mill preemie issues that any 30 weeker would experience. The doctors tell me every day how healthy he is, and now that we have gotten to know his medical team better and have settled into a routine, things have honestly become much easier. Annabelle turns 5 on Saturday, and originally I was hoping he would be home in time for her birthday, or at least Easter, but it looks like we will be stuck here until April. But, now that we are so close to April, the flu restrictions have been lifted for everyone 12 and over, so my sisters will be able to meet him this week😊 Thank you for reading and for your continued prayers!
Sunday, March 18, 2018
A Day in the Life of a NICU Mom
Before Nick was born, I didn't know anyone who has had a baby stay for an extended time in the NICU, so I wanted to share what a typical day looks like for us:
Another way we have gotten lucky in our NICU experience is we only live 10 minutes away from the hospital, my parents live locally as well, and Cory's parents and family are only a few hour's drive away. Cory and I always talk about what a nightmare this pregnancy and the subsequent weeks in the NICU would have been if Cory was still in the Army and we were still living in Tennessee, or, even worse, in Oklahoma and Kansas, when we were a 10+ hour drive or expensive plane ticket away from family. Living so close to the hospital has made it possible for me to go back and forth multiple times a day, and our parents have helped greatly with Annabelle and Graham, from doing anything from coming to stay with us for a few days or picking them up for a few hours so Cory and I can go to the hospital together. We know some of Nick's neighbors in the NICU have parents who live up to an hour away from the hospital, and don't have the ability to stop by for an hour during Graham's nap time like I do, or have other children but don't have reliable child care or family that can help during the day (siblings still aren't allowed in the NICU since it is still considered flu season.) Also, a perk of having to leave my job midway through the year is I don't have to worry about how I will balance spending time with Nick, taking care of my two other kids, and going back to work when my maternity leave is over. I'm not sure how having a baby in the NICU would influence maternity leave, but I'm sure it's an issue other working mothers have to face at some point. The reason I'm pointing all of this out is because it's hard not to pass judgement on my fellow NICU parents at times, especially when there are parents I rarely, if ever, see spending time with their baby. It's easy to assume they are choosing not to be with their child, but a sad reality of the NICU is there are situations and circumstances that legitimately prevent a parent from seeing their infant, period, let alone as often as they would like. It's a sad and humbling reality that reminds us, once again, how lucky we are, and how much worse our situation could be.
Nick is fed every three hours at the same time every day. Every three hours, his nurse will check his vital signs and begin prepping his formula for his feeding tube. During this time, I will change his diaper and outfit if needed, and take his temperature. Since one of the greatest challenges of this experience has been trying to balance being with Nick as often as I can without completely neglecting Annabelle and Graham (long post on that coming soon), knowing exactly when he eats is helpful to plan my day around. On the weekends, and on days during the week when Cory isn't traveling, I will get to the NICU in time for his 5:30am feeding. This has become my favorite part of the day with him, because our wing of the hospital is usually still quiet and sleepy at this point, and getting to cuddle him in the dark while I drink my coffee reminds me of what our life would be like if he was a "normal" newborn and I was waking up to feed him during the night at home. I will then leave by 6:00, so that I can be back to the house in order to get Annabelle and Graham dressed and ready for school.
During the day when Annabelle is at school and I'm not taking care of Graham, I will head back to the hospital and spend time with Nick until it is time to pick Belle up from school. I read books that Annabelle has picked out to him, sing him songs, and have kangaroo (skin to skin time) with him. No matter what, each day I will leave by 2:00 so that I can be home when Annabelle and Graham get home. I will then do normal mom things until 7:30, and, once Annabelle and Graham are asleep for the night, I will head back to the hospital for his 8:30 feeding.
In the first (awful) few days after being discharged from the hospital and having to leave Nick behind, I had such a hard time accepting that changing his diaper and taking his temperature was the extent with which I could care for my child. Knowing that I had to go out into the cold to get in my car, drive ten minutes, park, go up an elevator, use a pass to get buzzed through two heavy, locked doors, and then ask a stranger permission to pick up my child is such an unnatural feeling that it took several weeks and lots of crying in my car on the way home before I could see the situation clearly. I’m an emotional person. I feel things deeply and react with my gut, and it took time before I could convince myself that Nick didn’t actually need me to be with him at all times. His needs were being met by very capable and very sweet nurses, and my other children actually really do need me much more than Nick does. I think the nicu is an experience that takes time to process, and it took a full month before I was able to accept that I couldn’t simply move into his room, dig in my heels and refuse to leave. Understanding that Nick is where he needs to be-and even though people have been telling me this since he was born, I think this is something a mother needs to feel in her bones before she can accept-has helped us fall into a routine as we count down our days in the nicu.
Another way we have gotten lucky in our NICU experience is we only live 10 minutes away from the hospital, my parents live locally as well, and Cory's parents and family are only a few hour's drive away. Cory and I always talk about what a nightmare this pregnancy and the subsequent weeks in the NICU would have been if Cory was still in the Army and we were still living in Tennessee, or, even worse, in Oklahoma and Kansas, when we were a 10+ hour drive or expensive plane ticket away from family. Living so close to the hospital has made it possible for me to go back and forth multiple times a day, and our parents have helped greatly with Annabelle and Graham, from doing anything from coming to stay with us for a few days or picking them up for a few hours so Cory and I can go to the hospital together. We know some of Nick's neighbors in the NICU have parents who live up to an hour away from the hospital, and don't have the ability to stop by for an hour during Graham's nap time like I do, or have other children but don't have reliable child care or family that can help during the day (siblings still aren't allowed in the NICU since it is still considered flu season.) Also, a perk of having to leave my job midway through the year is I don't have to worry about how I will balance spending time with Nick, taking care of my two other kids, and going back to work when my maternity leave is over. I'm not sure how having a baby in the NICU would influence maternity leave, but I'm sure it's an issue other working mothers have to face at some point. The reason I'm pointing all of this out is because it's hard not to pass judgement on my fellow NICU parents at times, especially when there are parents I rarely, if ever, see spending time with their baby. It's easy to assume they are choosing not to be with their child, but a sad reality of the NICU is there are situations and circumstances that legitimately prevent a parent from seeing their infant, period, let alone as often as they would like. It's a sad and humbling reality that reminds us, once again, how lucky we are, and how much worse our situation could be.
Nick is fed every three hours at the same time every day. Every three hours, his nurse will check his vital signs and begin prepping his formula for his feeding tube. During this time, I will change his diaper and outfit if needed, and take his temperature. Since one of the greatest challenges of this experience has been trying to balance being with Nick as often as I can without completely neglecting Annabelle and Graham (long post on that coming soon), knowing exactly when he eats is helpful to plan my day around. On the weekends, and on days during the week when Cory isn't traveling, I will get to the NICU in time for his 5:30am feeding. This has become my favorite part of the day with him, because our wing of the hospital is usually still quiet and sleepy at this point, and getting to cuddle him in the dark while I drink my coffee reminds me of what our life would be like if he was a "normal" newborn and I was waking up to feed him during the night at home. I will then leave by 6:00, so that I can be back to the house in order to get Annabelle and Graham dressed and ready for school.
During the day when Annabelle is at school and I'm not taking care of Graham, I will head back to the hospital and spend time with Nick until it is time to pick Belle up from school. I read books that Annabelle has picked out to him, sing him songs, and have kangaroo (skin to skin time) with him. No matter what, each day I will leave by 2:00 so that I can be home when Annabelle and Graham get home. I will then do normal mom things until 7:30, and, once Annabelle and Graham are asleep for the night, I will head back to the hospital for his 8:30 feeding.
In the first (awful) few days after being discharged from the hospital and having to leave Nick behind, I had such a hard time accepting that changing his diaper and taking his temperature was the extent with which I could care for my child. Knowing that I had to go out into the cold to get in my car, drive ten minutes, park, go up an elevator, use a pass to get buzzed through two heavy, locked doors, and then ask a stranger permission to pick up my child is such an unnatural feeling that it took several weeks and lots of crying in my car on the way home before I could see the situation clearly. I’m an emotional person. I feel things deeply and react with my gut, and it took time before I could convince myself that Nick didn’t actually need me to be with him at all times. His needs were being met by very capable and very sweet nurses, and my other children actually really do need me much more than Nick does. I think the nicu is an experience that takes time to process, and it took a full month before I was able to accept that I couldn’t simply move into his room, dig in my heels and refuse to leave. Understanding that Nick is where he needs to be-and even though people have been telling me this since he was born, I think this is something a mother needs to feel in her bones before she can accept-has helped us fall into a routine as we count down our days in the nicu.
Wednesday, March 14, 2018
One Month Update
*Note: I am sure my explanations for things that have happened throughout my pregnancy and Nick's time in the NICU, like a subchorionic hematoma or the placental abruption, are not completely medically accurate. I am obviously not a doctor, so don't take everything I write as exact definitions or explanations of these conditions. Just wanted to clarify :)
Nick is already one month old today! It is so hard to believe I should only be 34 weeks pregnant at this point, and his due date is still 6 weeks away. Each month, my plan is to give updates about how Nick is progressing in different areas, especially while he is in the hospital.
Weight:
Nick was born weighing right at 4 pounds, and was 17 inches long. He lost a pound throughout the first week of his life, like most newborns do, but gained it back over the course of this month. He is now up to a healthy (for his age) 5 pounds, and is 18 inches long. Fun fact about preemies: at our hospital, the only minimum weight babies must weigh before discharge is 4 pounds, because that is the lowest weight that can safely ride in carseats. The doctors are thrilled with Nick's progress once he started on formula (more below) and he seems to be moving in right direction.
Eating:
This has been the biggest area of difficulty with Nick so far this month. Babies do not develop the ability to coordinate breathing, sucking, and swallowing until the 36th week of pregnancy, and since Nick was born at 30 weeks, he doesn't, and can't be expected to, know how to eat on his own, so he has been on a feeding tube since day one. For the first two weeks of his life, Nick was fed donor breast milk from his feeding tube. I have never breast fed because of a medicine I take daily that passes through breast milk and has the potential to be harmful for the baby, but, at 30 weeks, even formula that is designed specifically for preemies would have been too hard on his stomach. From early on, Nick has struggled with reflux issues, much like Graham did as a newborn. During his feedings, Nick would begin to arch his back and act like he had a bad taste in his mouth, but would never actually spit up. While he was doing this, he would stop breathing, and then, to make up for the oxygen he wasn't getting, would begin to basically hyperventilate, which would cause his heart rate to drop and would set off one of his alarms. This is known as a a bradychardia, or a brady for short (again, not the most perfect medical explanation, but it's what I understand it to be.) At first, this was causing his weight gain to slow, so at three weeks he switched to alimentum formula. This seemed to improve his reflux, but his brady's continued. The doctors and nurses weren't and still aren't overly concerned about his brady's, because they aren't happening enough to signal an infection or to cause him to go back on oxygen, and are simply a side effect of his prematurity. Yesterday, he switched to preemie formula, which he will most likely continue eating once he goes home.
Milestones:
1. The first huge milestone Nick reached was his ability to go off oxygen and breathe on his own. Most likely because of the two rounds of steroids Nick received throughout my pregnancy to help speed up his lung development, he only needed oxygen for the first few days of his life, which is virtually unheard of for 30 weekers.
2. No more closed isolette! The isolette is basically a closed in crib that preemies sleep in because they are attached to so many different machines and monitors. The reason they have a closed lid is because preemies like Nick haven't yet developed the ability to regulate their body temperature, so they stay in a closed crib where the temperature is adjusted for them and keeps them toasty warm. On day 23 (so when I should have been 33 weeks pregnant,) the nurses took off the lid of his isolette and he was able to keep a stable temperature on his own. This is a happy milestone because I can now maneuver him in and out of the isolette on his own without asking a nurse for help, and I can change his diaper and clothes more easily.
3. Another huge and impressive milestone Nick reached that the doctors were not expecting him to at this age is the ability to drink from a bottle. Nick is fed every three hours exactly, and the nurses and occupational therapists that work with Nick began watching for signs that Nick was ready to start a bottle, such as rooting, sucking on his fingers, and waking up around the time he was due to be fed during this time. This past Saturday, when he was still only three weeks old, the nurses gave him his first bottle, and he was able to drink 1/4 of it. I was a little crushed that I wasn't the first one to feed him a bottle, but I was able to later that night when I got to the hospital. The process of getting him to drink from a bottle is incredibly complex and delicate-since he hasn't developed enough to know how to breathe, suck, and swallow on his own, he will begin drinking from the bottle and won't stop on his own, which causes him to stop breathing, which triggers a brady. To help him learn to breathe while eating, I let him suck 3-5 times on the bottle, and then tilt in downward so the formula no longer flows through the nipple. Since he still isn't breathing while he eats, this lets him catch his breath before we begin again. The risk of beginning him on a bottle is it could cause his brady's to become more regular, in which case the doctors would call off the bottle feeding for a few days. It is a careful process of wanting him to move closer to being off his feeding tube, but runs the risk of him taking a few steps backwards. It is hard to see him struggle with something that Annabelle and Graham were able to do immediately after birth, but it really is such a blessing that he is able to eat from a bottle at all at this point.
Coming up this month:
The big focus of this month will continue to be getting him to eat from a bottle with ease, and getting his brady's to stop, which will hopefully come with maturity. He must go two days with no feeding tube and eating exclusively from a bottle, and five consecutive days with no brady's before he is allowed to go home. I would love if he is home by Easter, but that is probably not a realistic goal. The doctors told us to be prepared for him to be in the NICU until his due date (April 23), and that anything earlier than that is a bonus. Overall, just like in my pregnancy, we have gotten incredibly lucky that Nick is as healthy and strong as he is. There are babies that spend months in the NICU. There are babies that need repeated surgeries, and babies that have lifelong disabilities as a result of their prematurity. I have seen a baby being prepped to be airlifted to a nearby hospital that is more equipped to handle sicker babies who require more complex surgeries. The nurses told us that they do not usually see babies born as prematurely as Nick, so the fact that we have dodged so many potential bullets is truly incredible. The doctors have warned us that he still has a long way to go before we can begin talking about discharge, but every day he seems to be getting a few steps closer to being home :)
Nick is already one month old today! It is so hard to believe I should only be 34 weeks pregnant at this point, and his due date is still 6 weeks away. Each month, my plan is to give updates about how Nick is progressing in different areas, especially while he is in the hospital.
Weight:
Nick was born weighing right at 4 pounds, and was 17 inches long. He lost a pound throughout the first week of his life, like most newborns do, but gained it back over the course of this month. He is now up to a healthy (for his age) 5 pounds, and is 18 inches long. Fun fact about preemies: at our hospital, the only minimum weight babies must weigh before discharge is 4 pounds, because that is the lowest weight that can safely ride in carseats. The doctors are thrilled with Nick's progress once he started on formula (more below) and he seems to be moving in right direction.
Eating:
This has been the biggest area of difficulty with Nick so far this month. Babies do not develop the ability to coordinate breathing, sucking, and swallowing until the 36th week of pregnancy, and since Nick was born at 30 weeks, he doesn't, and can't be expected to, know how to eat on his own, so he has been on a feeding tube since day one. For the first two weeks of his life, Nick was fed donor breast milk from his feeding tube. I have never breast fed because of a medicine I take daily that passes through breast milk and has the potential to be harmful for the baby, but, at 30 weeks, even formula that is designed specifically for preemies would have been too hard on his stomach. From early on, Nick has struggled with reflux issues, much like Graham did as a newborn. During his feedings, Nick would begin to arch his back and act like he had a bad taste in his mouth, but would never actually spit up. While he was doing this, he would stop breathing, and then, to make up for the oxygen he wasn't getting, would begin to basically hyperventilate, which would cause his heart rate to drop and would set off one of his alarms. This is known as a a bradychardia, or a brady for short (again, not the most perfect medical explanation, but it's what I understand it to be.) At first, this was causing his weight gain to slow, so at three weeks he switched to alimentum formula. This seemed to improve his reflux, but his brady's continued. The doctors and nurses weren't and still aren't overly concerned about his brady's, because they aren't happening enough to signal an infection or to cause him to go back on oxygen, and are simply a side effect of his prematurity. Yesterday, he switched to preemie formula, which he will most likely continue eating once he goes home.
Milestones:
1. The first huge milestone Nick reached was his ability to go off oxygen and breathe on his own. Most likely because of the two rounds of steroids Nick received throughout my pregnancy to help speed up his lung development, he only needed oxygen for the first few days of his life, which is virtually unheard of for 30 weekers.
2. No more closed isolette! The isolette is basically a closed in crib that preemies sleep in because they are attached to so many different machines and monitors. The reason they have a closed lid is because preemies like Nick haven't yet developed the ability to regulate their body temperature, so they stay in a closed crib where the temperature is adjusted for them and keeps them toasty warm. On day 23 (so when I should have been 33 weeks pregnant,) the nurses took off the lid of his isolette and he was able to keep a stable temperature on his own. This is a happy milestone because I can now maneuver him in and out of the isolette on his own without asking a nurse for help, and I can change his diaper and clothes more easily.
3. Another huge and impressive milestone Nick reached that the doctors were not expecting him to at this age is the ability to drink from a bottle. Nick is fed every three hours exactly, and the nurses and occupational therapists that work with Nick began watching for signs that Nick was ready to start a bottle, such as rooting, sucking on his fingers, and waking up around the time he was due to be fed during this time. This past Saturday, when he was still only three weeks old, the nurses gave him his first bottle, and he was able to drink 1/4 of it. I was a little crushed that I wasn't the first one to feed him a bottle, but I was able to later that night when I got to the hospital. The process of getting him to drink from a bottle is incredibly complex and delicate-since he hasn't developed enough to know how to breathe, suck, and swallow on his own, he will begin drinking from the bottle and won't stop on his own, which causes him to stop breathing, which triggers a brady. To help him learn to breathe while eating, I let him suck 3-5 times on the bottle, and then tilt in downward so the formula no longer flows through the nipple. Since he still isn't breathing while he eats, this lets him catch his breath before we begin again. The risk of beginning him on a bottle is it could cause his brady's to become more regular, in which case the doctors would call off the bottle feeding for a few days. It is a careful process of wanting him to move closer to being off his feeding tube, but runs the risk of him taking a few steps backwards. It is hard to see him struggle with something that Annabelle and Graham were able to do immediately after birth, but it really is such a blessing that he is able to eat from a bottle at all at this point.
Coming up this month:
The big focus of this month will continue to be getting him to eat from a bottle with ease, and getting his brady's to stop, which will hopefully come with maturity. He must go two days with no feeding tube and eating exclusively from a bottle, and five consecutive days with no brady's before he is allowed to go home. I would love if he is home by Easter, but that is probably not a realistic goal. The doctors told us to be prepared for him to be in the NICU until his due date (April 23), and that anything earlier than that is a bonus. Overall, just like in my pregnancy, we have gotten incredibly lucky that Nick is as healthy and strong as he is. There are babies that spend months in the NICU. There are babies that need repeated surgeries, and babies that have lifelong disabilities as a result of their prematurity. I have seen a baby being prepped to be airlifted to a nearby hospital that is more equipped to handle sicker babies who require more complex surgeries. The nurses told us that they do not usually see babies born as prematurely as Nick, so the fact that we have dodged so many potential bullets is truly incredible. The doctors have warned us that he still has a long way to go before we can begin talking about discharge, but every day he seems to be getting a few steps closer to being home :)
Monday, March 12, 2018
Nick's Birth Story
My complications with Nick first began when I was 11 weeks pregnant. Everything started the Friday before Fall Break, which was also the week of parent/teacher conferences (I was a third grade teacher at the time.) I was especially tired this week, and long nights at school meant my diet mostly consisted of snacks I could stash in my desk and fast food between conferences. I was already feeling some nasty side effects of this pregnancy-I had throw-up-in-the-shower-because-I-couldn't-make-it-to-the-toilet morning sickness clear into the third trimester, so severe that I eventually needed an anti-nausea medication for a bit early in the second trimester. That Friday, I was sitting on the couch talking on the phone, when all of a sudden, I began to bleed. I called the emergency hotline of my OB's office, and the triage nurse told us to head to the ER at St. Francis right away.
During the drive to the hospital, I assumed I was having a miscarriage, and began to think of how I would explain this to my five-year-old. When we got to the ER, a nurse did a quick ultrasound-she was an ER nurse, not a Labor and Delivery nurse, and explained the purpose of the ultrasound was not to identify a specific problem, but basically to determine if the baby was moving and had a stable heartbeat. To our immense surprise, the ultrasound showed a squirmy, active fetus, whose heartbeat was pounding away just like it should. The nurse explained that everything appeared to be normal at the moment, but told us to make an appointment to see my OB on Monday anyways.
A few days later, at this appointment, a more reliable ultrasound showed that I had what is called a Subchorionic Hematoma (or SH for short.) I know this is not the textbook definition of this condition, but it is essentially when blood gets trapped between the uterus and placenta, which causes otherwise unexplained bleeding. My doctor was not too concerned about this diagnosis-he explained that SH's are relatively common complications, and usually women will have one incident of sudden bleeding in the first trimester, but will have no other issues for the rest of their pregnancy, and the SH will heal itself by the 20 week ultrasound. Usually. SH's do slightly increase the risk of a miscarriage, so I was put on pelvic rest (no working out, no lifting anything heavy) and told to take it easy until my 20 week ultrasound.
For the next month or so, other than dealing with morning sickness that wouldn't let up, my pregnancy was uneventful. On a Sunday morning in mid-November, I woke up at about 1am to discover that I had had a second major bleeding episode. Thankfully, my in-laws happened to be staying with us that weekend, so my husband and I left our two other sleeping children and headed straight to the ER, who promptly sent us to Labor and Delivery. Once again, a quick ultrasound showed a healthy, growing fetus that was in no obvious distress, but it did show that a significant amount of blood was trapped somewhere in my womb. Because of the amount of blood that was evident in the ultrasound, I was admitted to the hospital for observation, and had my first appointment with the maternal-fetal medicine doctor (a high risk pregnancy specialist) the next day. This appointment showed that, at 17 weeks into my pregnancy, instead of healing, my SH had grown bigger and gotten worse. The doctor suspected the SH was to blame for the bleeding, and there was nothing anyone could really do about it. I was prescribed a week of bed rest to help encourage my body to begin healing, but was back in the hospital four days later with the same bleeding. I spent the week of Thanksgiving on bed rest again, but when I headed back to school the Monday after Thanksgiving, it seemed like things had calmed down.
This brings us to the important week of December 11th. Early that Monday morning, I woke up to discover major bleed #4. We repeated what was becoming a familiar pattern for us: drive to Labor and Delivery in the middle of the night. Get a quick ultrasound to confirm that what we now knew to be baby Nick was not in distress and that I hadn't began to dilate (I never did.) Get admitted to the hospital until the bleeding stopped. See the MFM doctor to try and determine what was going on. I would spend the next five nights and six days in the hospital, which caused several important things to happen. First of all, at this point, Nick and I were officially stumping the doctors. No one could tell us why I was continuing to have this bleeding, but, since I was only 21 weeks pregnant at the time, there was nothing anyone could really do, as the age of viability for a fetus is 23 weeks. The doctors explained that if the bleeding were to cause me to go into labor, at 21 weeks, the baby would be too premature to survive, so there was nothing they could do to help Nick or I at the moment other than to wait and hope for the best. We were given a 50% chance of making it to 32 weeks, were told to plan for long term hospitalization at some point in 2018, and that, in order to help me stay pregnant for as long as I possibly could, I would go on bed rest for the remainder of the pregnancy. Since I was new to the school district I taught at, I did not qualify for FMLA, which meant I would have to leave my job for the rest of the school year. But, the most important thing to come out of this scary week in the hospital, was that, now that the doctors were more or less expecting Nick to be born prematurely, shortly after Christmas, I received my first round of steroid injections to help speed up Nick's lung development. This would show to be a massive blessing during our stay in the NICU, as Nick was able to breathe on his own without the help of oxygen after only a few days.
Christmas and the crucial month of January passed without any episodes. Fast forward to Tuesday, February 6th, approximately 8 days before Nick is born, when this birth story gets really weird. I had a pre-scheduled ultrasound and appointment with my doctor, and the ultrasound showed that the SH was completely gone. Vanished. It seemed as though not teaching and not having to be on my feet all day had allowed my body to finally itself, and the doctor said there was "nothing on my ultrasound that would indicate I wouldn't have a completely normal pregnancy," and that it "wasn't quite in the miracle category, but it was close."
That was on Tuesday-fast forward to early Sunday morning. I woke up in the middle of the night with an intense pain in the lower left side of my back. It felt as though someone was twisting a knife deep in my side. I called Labor and Delivery and spoke to the on call doctor, who told me to take Tylenol, drink a bottle of water, and call back if it didn't stop. I followed her instructions, and was able to go back to sleep for another hour or so, but the pain eventually came back. I headed back to the hospital, where I was strapped to a monitor to check for contractions. The monitor showed that I was having contractions, but they were anywhere from 10 to 4 minutes apart (re: I was not in labor,) and by that point, the pain in my side had dulled to more of an ache than a sharp pain. I was sent home and told to come back if the contractions got more painful. For the rest of the day, I continued to have uncomfortable pain in my lower back. I spent most of the day seated with my heating pad, and I would have occasional sharp contractions, but they were not the same type of pain I remember having when I went into labor before. We went to a family party and came home at around 7pm, and that's when the bleeding began again. Back to the hospital we went. This time, I was having consistent, labor-like contractions, and was admitted again and given a second round of steroids. The next day, we were told that I had finally had too many bleeding episodes, and would need to remain in the hospital for the remainder of my pregnancy.
This brings us to the day before Nick is born. I had an appointment and consolation with my MFM doctor, which changed my situation significantly. The ultrasound revealed that the pain I had Sunday morning was a mild placental abruption, which is when the placenta begins to separate from the uterus. This happens in the final stages of delivery, but, like in our case, when this happens prematurely, it becomes a big deal, because the baby is dependent on the placenta to stay alive. I also had a huge blood clot attached to my umbilical cord, and there was blood in the amniotic fluid. In summary, things were going south very quickly. That night, a nurse practitioner from the NICU came to talk to me about the possible risks of having a baby born at 30 weeks, and explained that the doctors would not induce labor unless either Nick or I was in distress because a crucial part of the baby's lungs do not develop until 32 weeks gestation. The plan was to try our best to hang on for two more weeks.
Throughout the night, my bleeding continued to increase. I called my husband at 4:00 that morning and told him to get ready in case they decided to induce labor. By around 9:00am on Valentine's Day, it was becoming obvious that my body could no longer stay pregnant. I signed papers consenting to a possible c section, and was told not to eat or drink anything in case I needed to be rushed into surgery. Finally, at 10:30 that morning, the doctor told me they decided they needed to get the baby out. Right now. After that, things moved very fast. As I was being prepped for surgery, my bleeding became severe, and I was rushed back to the OR. A very sweet anesthesiologist, who would talk us through each of the steps during the c section, administered the spinal block, and the surgery began at 10:50. Nick joined the world at 11:02, and was immediately handed over to the NICU team that was standing by. The c section lasted for another 30 minutes or so, and all the while, I remember being very tense as we waited to hear how Nick was doing. We were told he was doing great, that he was big for being a 30 weeker (4 pounds and 17 inches), and I was able to see him briefly as he was wheeled past us on his way to his new home in the NICU. After the c section was over, the doctor told us that the abruption had become significant, but that the c section had gone well. I spent the next few hours in recovery before we were taken to see Nick. I was not able to hold him, but I was able to touch his hand through the side of his isolette.
I will write more about the first few days of Nick's life later, but, as you can tell from all of this, we got lucky that he was born exactly when he was. It's humbling and overwhelming to think about how many times we dodged a bullet in this pregnancy, and if things had gone just a little bit differently, things could have ended so badly for us. We have heard horror stories in the NICU about how some placental abruption cases end, and it's not an exaggeration that Nick is a true miracle baby. As hard as the NICU can be, knowing that we are one of the lucky ones makes the nights more bearable. More to come later!
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