Zachary's NICU Story

By Stephanie, UU

My son, Zachary Nathaniel, was born at 28 weeks, weighing only 2 1/2 pounds (1170 grams). At that time, we had no idea that I had a unicornuate uterus. It wasn’t until my delivery that we had a suspicion that something was wrong – my OB did an internal exam and felt only one horn of a uterus. We confirmed it 6 weeks later.

The Delivery

I had been feeling what I thought were Braxton Hicks contractions for a while. On Monday September 18th, I went to the bathroom and saw a small amount of blood on the toilet paper. We went to the OB, she did a manual exam and my cervix was long and closed. I was put on a monitor only to realize that I was having contractions, about 8 in a half hour. She did a fetal fibronectin test, which was negative (a negative result means there is little or no danger of preterm labor for at least a week or two). She sent me home and put me on bedrest until further notice. The next day, I went back to her office and was still contracting at the same rate. She did another manual exam and felt that my cervix had softened a bit since the day before. She urgently admitted me to the hospital to be monitored more closely. Everyone (the residents, the OB hospital attendings, my husband and I) thought it was overkill, especially given that my cervix was closed and the fetal fibronectin was negative. Nobody thought this baby was coming. But my doctor stuck to her gun and insisted we go. If it weren’t for her, things may not have turned out as well for us.

Over the next few days, I received magnesium to stop the contractions in order to buy us some time to get two days of steroids, which help to mature the baby's lungs. The contractions stopped and they moved me off the labor and delivery floor on Thursday afternoon. The plan was for me to go home Friday afternoon. But Thursday night the contractions started again and Friday morning I lost my cervical plug. That was when things started to feel very real. We realized at that time that this baby wasn’t going to wait. I was moved back to the Labor and Delivery floor immediately, and Friday night my water broke. My son was delivered on Saturday night at 9:35 pm. I delivered vaginally, at 8 centimeters. Zach was 2 ½ lbs. My husband jokes that I had an easy delivery because I only pushed for about 5 minutes.

Knowing that he was going to be small, the Neonatal Intensive Care Unit (NICU or unit) doctors were in the delivery room and intubated (put a tube down his throat to help him breathe) him immediately after he was born. We heard a small cry, which was a huge relief. Outside of the quick glance I got when looking below, the next time I saw him was a few hours later in the NICU. My husband was able to see him and touch him (we got a couple of pictures, all of which are too upsetting to really look at anymore -in one picture, my husband’s finger is the length of my son’s body). My son was then rushed right up to the unit. I always choke up when I see pictures of women holding their babies immediately after they are born. I feel robbed of that experience. I didn't hold my son until he was about 5 days old. But when I held him, the joy in the room was palpable.

My husband and I are both doctors. So when Zachary was born, my husband said to the NICU attending - "tell us honestly, how is he". What we were looking for was - “he’s breathing” or “he’s intubated and stable”. However, the first words we heard about our son were, "well he looks a bit chromosomal". Because of the UU, there was a lack of space in my uterus, thus when my son was born his face was very disfigured. His nose was on the right side of his face and flat, his ears were low, his feet were both clubbed. The day after he was born, his nose shifted to the center. The next day, it popped out. Then his feet straightened out. Eventually, everything settled into place and we realized that it was positional - that he was just smushed. At that time we didn't know why, but we made our appointment with the RE for 6 weeks later, once everything shrunk back down to size.

I feel deprived of the normal, exciting delivery. The delivery of my son was frightening. I didn’t smile when he was born, didn’t cry with joy. I was silent, waiting to hear whether or not he was breathing. It was not what I wanted. I wanted him in me, not in an incubator. I remember hearing my husband yell out in joy when Zachary was out, and remember thinking, ‘what is he joyful about?’ The only emotion I could feel was fear.

The NICU

The first thing they tell you is that it’s a roller coaster in the NICU, and that couldn't be more accurate. The other thing they tell you is not to watch the monitors. Your life becomes a routine of sitting and staring at a blinking and beeping monitor. And pumping.

As you read this, keep in mind that all babies are different. But from what we were told, our experience was pretty typical for a 28 weeker. We were fortunate to have no real surprises along the way. For the most part, Zach improved steadily throughout his 8 week stay. There were setbacks, but there are setbacks for every baby - hence the roller coaster analogy. They told us that we should expect for Zachary to be in the NICU until our due date (however, many babies do go home before their due date). We actually went home about a month before ours. But, if it weren’t for our medical backgrounds, we would have probably stayed another couple of weeks. I’ll expand on that later.

The NICU is divided into several sections – 1) the acute part of the unit that holds all of the really small and critical babies and babies on ventilators, 2) the main part of the unit that holds babies that still need respiratory support but are not on a ventilator, and then 3) a step down unit, where babies go if they are close to going home. Zach spent the first week in the acute part of the unit because he was intubated and on a ventilator. We could touch him through the openings of his isolette -but only for a few minutes at a time, so that he didn't lose too much body heat. The NICU nurses actually discourage touching the babies early on- not only do they lose heat (and if you don’t wash your hands thoroughly, are exposed to who knows what), touch is thought to overstimulate them and cause them to desaturate (desat; periods where the babies blood oxygen concentration drops below a certain number because the baby is not taking adequate breathes).

We spent almost all day long watching the monitor for desats. In the beginning the preemies do it all the time, all day long. Very often, the numbers would go back up on their own, which showed that he was learning to take a good deep breath. However, sometimes he would need a little help. The nurses taught us to rub his hands or feet very strongly, so that he would cry and take a deep breath. Then somehow, he stopped doing it as frequently. He got to a point where he was only really desating during feeds – he didn’t know how to pace himself, and would forget to take a breath while eating. And, eventually all of the preemie babies stop desating. The nurses tell you that your baby will outgrow it, but it’s so hard to believe when they are desating so frequently. The first week or two, each desat was terrifying. We would stare at the monitor, waiting for the numbers to go up, screaming inside, wondering why the nurses and doctors weren’t rushing over. I would find myself holding my breath until the numbers would go back to normal. But eventually we realized that it happens to every baby, the nurses and doctors are in total control and know when they need to be there, and the babies do outgrow them.

Zach was extubated (they took him off the respirator) after about 6 days and put on CPAP (continuous positive airway pressure) which is another respiratory device that allowed him to breathe on his own but provided some additional pressure to help keep his airways open and make it a little easier. CPAP is a horrible looking device. It covered at least half of his face, and had two prongs that were far too big for those tiny little nostrils. While it’s a step in the right direction, it was so hard to watch him look so uncomfortable. I was constantly readjusting the prongs, terrified that his nose would be all misshapen (it’s totally fine). Outside of the small peep we heard when Zachary was first born, this was the first time we actually heard him cry (when babies are intubated, you can’t hear them when they cry). It was music to my ears. After about a week or so on CPAP, he was moved to something called high flow nasal cannula, where he received oxygen via a regular nasal cannula, as well as additional pressure to help keep his airways open and make breathing easier. This was a great change, b/c we were finally able to really see Zach’s face. But a couple of days later we faced one of our first dips in the roller coaster. We came back one morning to find him back on CPAP – he was having too many desats and wasn’t ready for high flow nasal cannula. He stayed on CPAP another 2 ½ - 3 weeks and was finally moved to high flow nasal cannula successfully. He stayed on that for about 1 ½ - 2 weeks until he was weaned off oxygen support entirely. That was an amazing feeling.

Like most premature babies (and many full term babies), Zach became jaundiced a few days after he was born. He spent a total of about 7 days under “the lights”. While it was frustrating because we couldn’t take him out to hold him during this time, it was pretty uneventful and eventually his lab tests came back normal.

The NICU nurses are AMAZING. I can’t stress that enough. They are the ones responsible for the day-to-day care of the babies. It’s important to know who your baby’s nurse is each day and night shift– this way, you can call them when you are gone to in order to check in. I came in one day to find a card that one of our nurses made for me, with Polaroid pictures of my son the first time his face was free of breathing and feeding tubes. She had given him a bath at night and removed everything for it. Knowing how much it would mean to me, she took pictures to capture the moment. It was the first unobstructed view I had of him. Another time, I came in to find a beautifully knitted blanket draped over his isolette, with a matching knitted hat. One of the nurses brought it for him, to protect him from the harsh lights of the NICU. In return, we made sure to bring them lots of snacks and goodies. And we’d leave them our People and Us Weekly magazines to read once we were done with them. Anything to get on their good side;) But it’s impossible to repay them for the work that they do.

We were very lucky to have nurses who weren’t scared to challenge our son – they tried to wean his oxygen support as much as he could tolerate. The less oxygen support babies get the better, because too much oxygen can lead to vision problems, which is why every baby that receives oxygen support while in the NICU needs to get eye exams. Zach had two while in the NICU and one 6 months after we were discharged home. These were pretty traumatic. They use these little metal speculums to force the babies eyes open - Zach’s eyes were swollen for two days after each exam. Fortunately, when we were home we saw a pediatric ophthalmologist who was able to dilate and examine Zachary’s eyes without a speculum. With all of the oxygen support he had received, Zach’s eyes are totally fine.

Pumping becomes a very important part of the day for most mothers with a baby in the NICU. It was the only thing I could really do for my son, so I became a bit obsessed with it. I think this is totally normal. I rented a hospital pump, because according to the lactation specialists, the run of the mill breast pumps would not be adequate for the frequency with which I would have to pump. I remember sitting in the lactation office, crying as she was explaining why I needed to have this special equipment, envious of the woman next to me who was able to go home with her store bought breast pump. While Zachary was in the NICU, I pumped about every 2-3 hours. The NICU has a special fridge to store breastmilk – each mom was given a large Tupperware container to store the bottles. There was also a pumping room (we liked to call it the “lactation station”) - I probably spent more time there than my own home in the 8 weeks Zach was in the hospital. Most days, there were even lines for the pumping room. It got to the point that my friend and I would pump together –misery loves company, I guess. Even though I didn’t produce that much milk, I still had filled my Tupperware container as well as my freezer at home. It was always funny to see people’s reactions when you asked them to get something out of the freezer. Many moms had to buy an additional freezer for their homes for storage. I was not that lucky. That being said, once we stopped nursing (at about 7 months), I still had plenty of breastmilk to feed my son or to mix with cereal.

Every baby, whether preterm or full term, loses weight after they are born. Zach weighed 1170g when he was born, but got down to 1050g during his first week. He was so small that even the preemie diapers covered his whole body – in fact, he wore a doctor’s face mask as a diaper for some time. However, the nurses in the acute room would call him a bruiser, because he was actually one of the biggest babies in that area. We watched Zach’s weight gain as closely as we watched his desats. It was the most important news of the day. On our way home from the hospital, we would call every member of our family with the daily weight gain.

Before the preemie babies really start to put on weight, they need to get up to full feeds, whether it’s with breastmilk or formula. They start out getting continuous feeds through a feeding tube, either in their nose or their mouth, depending on their means of respiratory support. But the feeds start out very slowly (1 mL, 1/30th of an ounce, at a time), so as not to overwhelm the digestive system. The next step is bolus feeds, where they get fed through their feeding tube every 2-3 hours. After they have successfully tolerated the bolus feeds, it’s time to start bottle and/or breastfeeding. We opted for both – I breastfed when I was there and let them bottle feed him at night. Some parents (and the lactation specialists) worried about nipple confusion, but I just wanted him out of there. We figured that the sooner he could figure out how to eat on his own, the faster we would get him home. It took a few times for Zach to figure out how to breastfeed, but we were persistent and he finally caught on. For some it took longer, but a lot of the babies eventually got it. It could be frustrating nursing in the NICU - the lack of privacy can be an issue, for those that are shy about nursing in public. We would use these folding dividers, but it wasn’t the perfect solution.

Once the babies get up to full feeds, they really start to put on the weight. For the most part, gaining weight was a steady process for Zach. Once Zach started gaining, most days he would gain about 20-30grams (30 grams is about one ounce). Obviously some days would be less, and some days he wouldn’t gain at all. He rarely lost weight. Another huge triumph for us was the first time Zach gained weight after breastfeeding exclusively for the entire day -we knew he was getting enough from my breasts. All that pumping was finally worth it! I think our obsession over weight gain that originated during Zach’s few months of life will stay with me for a long time. I still watch his weight very closely, even though he is well within the normal weight range for his real age (not his adjusted or corrected age, which is three months younger). He’s a great eater, yet still, every meal is a triumph and I relish in the ounces that he is gaining.

I will never forget the first time I held my son. He was 5 days old, still in the acute room on a ventilator. The nurse said the 8 words I had been waiting to hear – “Mommy, do you want to hold your baby?” I burst into tears. Holding Zachary in the NICU was always an event. Whenever I wanted to hold him, I would have to put on a hospital gown, strip him naked, and we would sit bare chest to bare chest, the heat of my body keeping him warm. The nurses in the NICU called it “kangaroo care”. I called it “bliss”. It was always wonderful, but in the beginning, it was also very frustrating. It was difficult to manipulate him with all of the tubes and wires connected to his body and face. We would have to call a respiratory therapist to come disconnect his tubing while we removed him from the isolette, and then to hook him back up once he was settled on my chest. For a while, we could only take him out of his isolette once a day, and my husband and I would take turns every other day holding him. Once he was more stable, we were able to take him out a few times a day for 10-15 minutes at a time (so he didn’t get too cold). Once he started maintaining his body temperature outside of the isolette, I don’t think we ever put him down. Kangaroo care allowed us to bond with our son.

Visitors would drive me crazy. I felt like I had to entertain them, which was added stress and pressure that neither my husband nor I needed. We felt the need to make others feel better about the situation, when we weren’t feeling so great about it ourselves. I would often hide in the pumping room, just to escape the casual (or not so casual) conversation. Watching people’s reactions to our son was hard. One set of visitors came and started crying when they saw Zachary; the husband actually stayed in the waiting room because he “couldn’t handle it”. Then don’t come!! Watching our visitors insensitively stare at other babies in the NICU was beyond aggravating. “Why is that baby here, he doesn’t look small?” “What’s wrong with that baby?” I wanted to scream, “It’s none of your damn business”. I’d have similar frustration (and anger) when other people’s visitors would stare at my son – I was known to blatantly say, “Stop staring”. People would get very embarrassed. Every time the monitor would beep, our visitors would watch me watching the monitor, waiting for my reaction. I wanted to scream at them (and sometimes did), “stop staring at me”. And because we could only have two visitors at Zach’s bedside at a time, it meant that every time someone came to visit, one of Zach’s parents couldn’t be with him.

In order for us to leave the NICU for home, the goal was to have Zachary breathing and eating on his own, weighing at least 4 lbs (he actually went home at 5 ½ lbs), and at least 3 days without any desats. He also needed to be able to maintain his body temperature outside of his incubator. Obviously, some babies don’t achieve these goals entirely – but the hospital will make provisions to get the babies home with assistance if necessary. For example, some babies that still desat but are otherwise eating, breathing and gaining weight will go home with a respiratory monitor.

Very few people understand what it is like to have a preemie. If one more person told me that I was actually lucky, because his being born early meant that I had him with me for an extra 3 months – the stupidity!! The day after Zachary was born, my closest friend, who I have known since nursery school, asked me if he had that “new baby smell”. She didn’t realize that I hadn’t smelled him, let alone touched him or kissed him. It was a hard question to answer. How was she to know? During the two months we were there, we developed a strong support system within the NICU. We became friends with other parents, who are truly the only people who understand what you are going through. We would become almost surrogate parents for each other; if one of us needed to step out or couldn’t come visit one afternoon, we would keep a close eye on their babies and let them know what they missed. We became very attached to these other children, and invested in their futures. I don’t know what I would have done without our NICU friends. They know how you feel every time your baby’s monitor beeps. They know how you feel each time you have to put your baby back in the isolette. They know how hard it is to leave your child every night, which was by far the hardest part of this whole experience. They know how you feel not being able to care for your own child. The first time I changed Zachary’s diaper was a huge triumph for me. I felt like a mommy for the first time. It was a long time before I let anyone change one of his diapers – I felt so deprived of caring for him for so long.

It wasn’t weight gain, maintaining his body temperature or even the need for oxygen that kept Zach from leaving the hospital, though. It was those damn desats. This is the case for most babies. As I mentioned, in order to leave the NICU we needed to have 3 days without any desats. This means that if your child goes 2 ½ days without one, but has one in those last 12 hours, you are back to ground zero. For some, this could go on for weeks until the baby would finally stop having them. For Zach, it got to the point where he would have them only when eating. The little guy would just forget to breathe. And he would do it with every feed. The doctors just weren’t comfortable sending us home knowing that he would desat with every feed. We would have to pace him, and pull the bottle out of his mouth after every two sucks– suck suck breathe, suck suck breath, suck suck breathe. But eventually, he got down to doing them only sporadically during feeds. I could tell by looking at him when he was desating, and knew to take the bottle out of his mouth and give him a break.

After a few days with minimal desats during feeds, we knew we were close to going home. The nurses offered to let me have a sleepover with Zachary. Many NICUs have a room called the “nesting room”, which has a bed, crib, television, etc. that parents can stay in with their baby right before the baby is ready to go home. It’s like a practice run. The nurses will check in with you, but for the most part, you are on your own. I was waiting for that day for a long time, to actually have the opportunity to care for my baby overnight. It was wonderful (although the scabies I caught from the dirty bed were not!). After nesting with my son (and a refresher CPR course), the doctors and nurses both felt comfortable discharging him home. This is where our medical background really helped us – most parents would have probably stayed until there were no desats during feeds, but we felt confident in our ability to handle the situation. And so did the hospital staff. Goodbye NICU, hello life! HOME

HOME

Zachary was born on September 23, 2006 and discharged home from the NICU on November 22, 2006, the day before Thanksgiving.

A big part of going home is about what you can do to avoid going back. This meant Zach not getting sick, since he came home from the hospital in the middle of the winter. Zach spent the entire winter in our home, except for a few trips to the pediatrician where he was always rushed into a room instead of having to wait in the waiting room with all of those runny noses. He also received monthly Synagis injections, which is a medication that protects preemies against a respiratory virus called RSV, which is known to be problematic for small babies. We accepted visitors, but had 3 simple rules: 1. Purell before you touch him, 2. If you’re sick, getting sick, or live with someone who is sick, don’t come over, and 3. Don’t touch his hands or his face. And it worked – Zachary made it through the winter without a single sniffle. Since then, we’ve become a lot more relaxed.

While it was difficult to let go of our NICU experience in the beginning, I sometimes forget now that he was even a preemie. It’s hard to believe that it all happened. But at that time, I never thought I would get over it. I never thought I would want to try again. But here we are, talking about trying to conceive again, meeting with a perinatologist about what to expect in a future pregnancy. So for those of you have a premature baby or who are anticipating a premature delivery, please know that you do get past it. It takes time, but eventually you do heal from the experience. And the time spent away from your child, while devastating to a new parent, does not impact your ability to bond to your child. I feel incredibly close to my son, and he is very much so attached to his mom. In fact, I truly believe he is tougher for it. He was a fighter in the NICU (he was constantly pulling the CPAP and nasal cannula off his face, or his feeding tube out of his nose), and he is a fighter as a 14 month old. The terrible two’s should be interesting. But I wouldn’t change it for a second.

The older he gets, the less difference I see between him and other babies his age. All babies do things at different rates, and this becomes more apparent as they get a bit bigger. Zach is 14 months old and finally walking – our good friends have a boy who was full term and didn’t walk until he was 15 months. While I still have to stop myself when I start comparing Zach to other children his age, I find myself doing it less and less. We now live our life no different than families with full-term babies. We are very blessed.