Our Preemie Journey

I remember sitting in my prenatal classes as we were discussing birth plans thinking about what that day was going to be like for me and my husband. Anyone who knows me will tell you that I am a planner. I like to be prepared for any and everything and generally expect things to go according to my plans. Knowing this about myself and knowing how little control I was likely to have when it came to my son's birth, I figured my best plan should be "don't have a set plan." That way, I couldn't be disappointed or caught off guard when it didn't go the way I expected. Looking back, this was probably the single best decision I made, and perhaps best possible way I could have prepared for what actually happened.

February 2nd seemed like a pretty normal and uneventful day. I had just hit 32 weeks and my sciatica was finally feeling a bit better. Things were crazy at work, but I was able to sneak away for a quick lunch with an old coworker. That day was one of those "wintery mix" days, where there was a thin layer of slushy ice everywhere. On my way back from lunch, I slipped on the sidewalk and fell straight forward. More shaken up than anything, I was thankful that my arms and coat had braced most of my fall. Nonetheless, being the risk averse person I am, I decided to call my doctor to double check. To be safe, she suggested I stop by the hospital for some routine monitoring--just to make sure nothing had happened.

Thinking nothing of it, I went straight in and let my husband know I'd probably be home just a little later that night. To cut a very long story short, as I was being monitored, my baby's heart had a deceleration (heart rate drop), which was pretty concerning. The doctors and nurses decided to keep me over night, and one day turned into 5 days with long periods of everything being normal to sporadic dips in my baby's heart rate. At first, my doctors told me we needed to wait 24 hours. Then was the idea that I might be on bed rest for a month, before I delivered. Then the thought that they wanted to get me to 35 weeks. Then, just 34. Then the notion that I needed to go ahead and consent for c-section now, because there was a chance that could happen at any time. On February 7th (at 33 weeks), after another heart deceleration, my doctor rushed in to tell me that it no longer made sense to wait--there was someone in the OR at the moment, but in 20 minutes, they were going to deliver my baby, ready or not. I remember shaking as she rubbed my back and calmly walked my husband and I through the procedure. My husband says I was unbelievably calm and strong in that moment, but all I remember is being so scared for my baby that I could barely say a word. What kind of birth or plan I had no longer mattered. Whether my son would survive was the only thing I could think about.

Usually, when you hear someone's birth story, there is a lot of chaos followed by an overwhelming feeling of joy. "When they put my baby on my chest, it was all worth it!" or "When she finally arrived, I was overflowing with love!" As a preemie mom, those are feelings and experiences that I never got to have, and it's hard not to feel robbed or jealous of that. I didn't get to hold my baby on my chest because he was whisked away to the NICU before I could even see him. I didn't feel a sense of relief after he was born because I had to spend an hour in the recovery area without my husband (he followed our son to the NICU) consumed with worry about the baby I still had yet to meet. We didn't get to have a birth announcement that said "mom and baby are doing great!", because the reality was that we were a long way from that.

Because of the dramatic differences between a term and preemie birth, the NICU can be a very isolating experience. While most new moms tell the woes of cluster feeding, NICU moms pray for their baby to develop the ability to eat. As other new moms might worry that their baby is making a weird sound or stops breathing in the middle of the night, NICU moms pray for their babies to be able to breathe without extra oxygen or machines. Not that these "normal" new mom worries are any less valid or real. They are just as hard and just as meaningful. But, they are some of the very first ways as a preemie parent, you come to realize that your experience is very different from that of other parents.

At times, I found it difficult to navigate this space of having a similar, yet drastically different experience. My "mom group" is made up of perhaps the most inspiring and supportive group of women, and I relied on their humor, support, and encouragement tremendously. However, there were times where I still found it hard to connect. Sometimes it was something silly. Like when a number of them started pumping for the first time in preparation for their return to work and were surprised at the inconvenience and the amount of effort that the whole process took. I had exclusively pumped for over a month while my son was in the NICU and felt like a true expert by the time all those questions came up. Other times it was much harder, as I watched their babies met milestones without issues, or the fact that their doctor appointments were just another check on the list, rather than a constant source of anxiety.

At 20 months, I wish I could say that we are past all that now, but there are aspects that still linger. Our son's gross motor skills are still a bit delayed. His preemie lungs make him much more susceptible to things like brochiolitis (4 or 5 times at this point... ugh). And I'm pretty sure his weight will be an issue until we send him to college. 

That said, after quite some time, soul searching, and a little therapy too, I've come to accept that although being a preemie will always be part of our son's birth story, it isn't going to be his whole story. I've stopped qualifying his age when people ask, and I don't feel my heart race when people tell me he is small for his age. I often say that while I would never wish the NICU/preemie experience on my worst enemy, it has given me a perspective that I will always appreciate as a new mom. The developmental milestones are that much more meaningful and the snuggles are even more special. I can only hope that there is another preemie mom out there reading this who can start to feel a little less isolated. Though your experience and concept of normal may be wildly different, you are not alone.

Fed is Best

My pregnancy was pretty uneventful.  I gained weight appropriately. I craved the right amount of cheese and carbs.  Every visit the doctor sent me away telling me “everything looks great”. So when my water decided to break at just 36 weeks, it was quite unexpected!

For me, I work in women’s health care so I remained as calm as I could and put my trust in my doctors that I have carefully chosen to get me and my baby through this safely.  There was some urgency to deliver within a certain timeframe to avoid risk of infection. And there was also the chance that I could have to have a C-section if my baby wasn’t as ready as my amniotic sac was. But after just 12 hours of labor, complete with some opening of my cervix, Pitocin and an Epidural (!), I delivered what seemed to be a healthy baby girl weighing 5lbs 12 ounces!

Not to long after, shit got real.  Immediately the nurses noted how important body heat was for this little one and that her blood sugar was a little low.  The baby wouldn’t latch. Instead she was shivering and crying and I was helpless. The nurses quickly gave up on attempts to breastfeed her at that moment as this baby needed food stat!  My baby received her first dose of man-made formula within 30 minutes of her birth.

A few hours later we were transferred into our post-natal room with baby.  Everything was quite a blur. Besides the hectic chaos happening with bringing a new baby into the world and trying to rush food into her little body, this was 2016 and the presidential elections was happening at that very moment.  The world was also at chaos.

The nurse was checking our little one’s blood sugar approx. every hour.  They would prick her toe and try to squeeze as much blood as they can. Sometime the nurse would get some, sometimes she wouldn’t.  But the readings that did come back, showed the levels were only getting worse and about 2:30am they decided to transfer my baby to the NICU to monitor her blood sugar levels.  

We were going to the NICU.  Even for parents with a seemingly healthy, almost to term baby, this “prized trip” is very scary.  I was a little more calm than my husband. Again, I work in health care and knew that her odds of making it out of the NICU as a perfect baby were very good.  And I knew to trust the doctors that I had carefully selected.

My husband was terrified.  He immediately thought all the bad thoughts you think of when they tell you your baby is going to the NICU.  And I was still a little helpless and medicated so my husband had to escort our 12-hour old baby to the NICU.  

Immediately they hook your baby up to machines that make all sorts of noises and beeps that make YOUR heart race. They also discovered that she wasn’t really taking the food by bottle and that was causing her levels to continue to drop.  Fortunately the NICU nurses are way better at trying to feed a baby than a new, exhausted, doped up mom. Our little girl was taking down about 10-15 ml of delicious man-made formula provided by Abbott Laboratories, every 2-3 hours. But any mom out there knows this is not enough food to sustain a newborn!  Why was my baby not eating! All my brothers and sisters had plump little food monster babies. My ethnic background alone (Italian) suggests that girl should like herself some food! But somehow I was dealing with a tiny baby with no interest in eating. And she would not be released until she showed some promise of eating.

We were able to stay in the hospital for a few days to be close to the baby.  We spent all day in her little room just holding her or watching her sleep. Every 3 hours like clockwork, the nurse came around to weigh her, change her, and try to help us feed her.  The neonatologist suggested that she may have an underdeveloped swallowing mechanism (who knew that this was one of the last developed abilities in the womb and that maybe a 36-week cook was not enough time to develop simple swallowing!).  So baby girl was tubed. The nurse warned us that if she continued to not eat, she was putting a tube down her nose to pump food to her belly. But still, when we came back from a little break that 2nd night and saw a tube in her nose and taped down to the side of her face, we were heart broken.  Why did our little one have to endure such torture? And what if she didn’t eat eventually?

Over time, we eventually learned to not run out of the room in panic every time one of her monitors went off.  We started to calm down and let the doctors take control. We came to the realization that our baby would be fine and we honestly had one of the healthiest little ones in there.  So there is a happy ending for her. After 12 days of time well spent with incredible NICU nurses and doctors, we were sent home, kicked to the curb, see you later!

But lets talk about what else was happening.  What about mom and dad? Well we were messes. Our families were far away.  Visitors were limited. No one could meet our little girl and we were scared and alone.  For the first few days the lactation nurse would come visit me to see if my girl would latch.  She never did. Instead she would start to shiver and the nurse reminded us how critical it was to get my baby food and so we quickly removed her from the breast after a few short minutes of trying.  I tried to pump too. They brought in this industrial hospital-grade pump and every 3 hours I pumped away for the recommended 20-30 minutes. But I was getting nothing. “Keep trying, it takes a while to come in” they said.  I kept trying.

For some reason, the minute you tell someone you just had a baby, other women feel the need to ask you if you are breastfeeding.  So everyone we interacted with over the next few days, weeks, etc…, asked “are you breastfeeding?” And as simple as it sounds to justify, I couldn’t really explain to anyone, “No, I am not.  My baby is in the NICU and she doesn’t take food so she has a tube in her nose that deposits delicious formula directly to her belly”. On top of that, since baby girl was not demanding milk from me, I was having major production issues.  My milk never came in. I continued to pump 1/2 ounce of milk every 3 hours.

The lactation nurse suggested I go to the hospital’s breastfeeding support group.  So I called to make an appointment and when the person on the phone asked me to describe my issue she said that the support group doesn’t deal with “babies not eating or production issues”.  Thanks support group.

“Did you drink some Guinness?”, “Did you try Fenugreek?”, “Maybe you are not drinking enough water, drink more water”.  Yes, I heard all the unsolicited advice from people, some strangers even. And why I didn’t have myself a Guinness (because when your baby is in the NICU, really you do not want a beer, even if it is “for the good of the baby”.  But I tried the Fenugreek. And yes, it did smell like Indian food. I drank all the water. I tried to stay rested. I drank some red raspberry tea. But the truth of the matter was my baby had not yet developed her swallowing and needed food anyway she can get it.  And the lack of demand and the stress of being in the NICU was cause for little to no milk production by me. Sorry world.

When we were released from the hospital my husband and I were ok with the decision to continue to bottle feed our baby.  The doctor prescribed us special formula with the extra calories the little one needed and we decided to focus on her growth and what was best for her.  But that didn’t stop the constant barrage of inquiries about my breasts and my milk. I finally had to not so nicely ask that people stop asking me about it and stop suggesting what I should do.  I called the only person who’s advice I did want to hear…my friend who herself had 2 NICU babies.  I asked her if she was able to breastfeed and she told me...”are you kidding? That was such a struggle with my baby being in the NICU and all”.  She told me about how with her first, she kept trying because of the guilt she felt from the friends, family and strangers who constantly asked her about it.  She experienced exactly what I had. But after about 3 months of doing all she can and being extremely exhausted by making a bottle, feeding the bottle, trying to pump only to get a miniscule amount, cleaning the pump and repeat, she finally gave up.  And when she did she was finally able to focus only on her baby and a huge weight was lifted. She was no longer stressed by the ideal that breast is best.

So after 1 month of continuing to keep up with the cycle of bottle-feeding and pumping, I decided I provided all I could to my baby and now I must give her my time and full attention.  She had 1 month of delicious, antibodied 0.5 ounces of breast milk a day. And now she will be bottle-fed with only formula.

How do you deal with the sadness and depression you feel from not being able to feed your baby the way your body was made to?  You don’t. Because you are a mom now and your tough and stronger than you ever knew you were so you block out the noise and you fight through it to provide how you best can for your baby however that may be.  That’s being a good mom. And you just hope you have a supportive partner to back you up and stand by your body’s faults and the decisions you have to make in order to keep your baby thriving and yourself sane. Also you survived the NICU so you should already be proud of all your family has already accomplished.

Having a baby is stressful.  The NICU is stressful. Feeding a baby is stressful. You don’t have to let others make it worse.  You and you partner have to stay bonded to get through the early challenges. There may be no one to talk to because no one you know has experienced such things.  It is normal to not be welcoming to unsolicited help or advice. And the support groups that worked for your friends and neighbors may not be the right fit for you.  But it is also ok to ask for help, even if it is just so you can vent and then return to that needy, crying, smelly, adorable, beautiful, wonderful, special, little human.  And you know what…bottle-feeding wasn’t so bad. My husband enjoyed the special time he had with her as he fed her every morning. Baby was happy she was eating food and growing appropriately.  She is now a plump little food monster who still sometimes has trouble swallowing. We are all just fine. I guess fed is best! ☺



Hyperemesis Gravidarum

Hyperemesis Gravidarum.  It took me two months to remember these words, let alone spell them.  I was diagnosed following my first ER visit at 8 weeks pregnant. The doctors refer to it as hyperemesis; the support groups refer to it as HG; my friends call it the Princess Kate Thing.  It doesn’t matter what you call it – it’s terrible.

HG is an incredibly rare and extreme form of morning sickness that can last through the entire pregnancy. Mine started at 6 weeks pregnant.  I couldn’t open my eyes without intense nausea and vomiting. I only moved from my bed to throw up. By 7 weeks, I considered terminating the very-much-wanted pregnancy because I couldn’t function. I couldn’t take care of my daughter, work, or keep down water.  My doctor’s office finally prescribed Zofran, which had no effect. By 8 weeks, I was crying for hours each day and dry heaving. My sister-in-law, a midwife in a different state, was trying not to interfere with my relationship with my doctors, but she finally told me to go directly to the ER for an IV. I’m so glad I heeded her advice.  I had thrown up 8 times that day, which at that time was a record for me.

At the ER, I was given two bags of fluids, as well as 4 different kinds of medications (Phenergan, Zofran, Benadryl, and something else that I can’t remember). All the medications were “Schedule C,” meaning that the doctors thought they were safe, but no real studies had been performed on the safeness of the medication in pregnancy.  It scared me, but I physically felt better. I was sent home with a cheat sheet: eat small meals, try ginger, and drink lots of water. Ha – was that supposed to be a joke? I also was given the Scopolamine patch to wear for nausea and told to supplement with Zofran.

The medications held for roughly 6 weeks. I would have two good days, and then throw up 3-4 times the third day. It was manageable. I could play with my 18-month old daughter, go to work most days, and even travel.  Then the patch stopped working. I tried to go to prenatal yoga, and I spent the first 30 minutes crying, and the second 30 minutes laying down nauseous. I hit a new record – throwing up 11 times in one day – and went back to the ER.  This time, I was given two IV bags with Reglan and Benadryl. I’m so thankful for modern medication. If this had been 100 years ago, I would have just died from my pregnancy. There was no way for me to counter the dehydration on my own.

In the weeks following my second ER visit, I tried everything. Sea bands? Sure, why not? Osteopathic manipulation? Okay. Some crazy brand of macaroons? Fair enough. If I had to get out of bed, I had a lemon with me that I continually smelled. My daughter imitated me by walking around constantly with her fake lemon from her play kitchen held to her nose. I kept taking the Reglan and Benadryl. I still had to take three weeks of medical leave from work, and I had to cancel the class I was teaching at the local university. When my daughter would look for me, she would look first in my bed. It broke my heart. My safe food was McDonald’s hash browns. Seriously.

Although Reglan is schedule B, it comes with an increased risk of depression and I had to warn my husband that I was on unofficial suicide watch.  I was already experiencing intense depression from HG. I was feeling worthless and like I just couldn’t get through this pregnancy. There were so many moments that I looked at my husband and said, “I can’t do this anymore.” My sister-in-law told me to call a therapist and I did. My therapist made home visits because I couldn’t get in a car without vomiting.  She asked me why I didn’t call earlier. My response was that I was just trying to survive.

My doctors discussed giving me an IV at home and a full-time medication pump. Eventually, they decided that it added too much risk. Luckily, right around 19 weeks, I started to feel a little better. My nausea decreased, and I stopped throwing up as much. I, again, went back to work. Some days were better than others, but I was functioning.  I still cried through my therapy appointments. I continued to isolate myself from my friends and family because I had nothing but sad news to share. But, for the first time, I started letting myself connect with the baby. I thought about names for the baby, and I received joy from the baby’s little kicks.

I’m in my third trimester now.  I’m only throwing up once a day, which I’ll take as a blessing. The nausea comes on suddenly, but it also goes away.  I lost my safe food a few weeks ago, but that’s okay. I’m actually able to keep other food down now. At 28 weeks, I learned that I was back to my pre-pregnancy weight.  I had gained back all the weight that I had lost through the first and second trimesters. The nurse who weighed me told me she had never seen anyone so excited to have gained weight.  She clearly had not met many patients with HG. I’m still taking Reglan and Benadryl, and I’m still going to therapy. I’m trying to let people in and be excited about this little baby.  It’s still hard.

I’ve actually found some good support through a private HG support group on Facebook “Hyperemesis Gravidarum (HG) Support by HER Foundation”.  I’ve never been one for support groups, but it’s really nice to have other people who understand what I’m going through. The other people on the site get what it’s like to feel like you have the flu for months at a time, all while growing a human, and often questioning whether it’s worth it. I’ve only posted twice; although I do respond to other people.  One of my posts was when I had thrown up all over my suit on my way to a trial (I’m an attorney). I cleaned myself off with baby wipes (no, it didn’t all come off), asked for strength, light, and love from my co-HGers on the site, then performed the trial, and actually won my case. The support group gave me exactly what I needed to get through that day.

I had a c-section with my daughter because she was breach. I want to Vbac with this little one. However, I have decided to schedule a C-section for 39 weeks.  For my mental health, I need an end date, and one sooner, rather than later. I’m hoping that this little babe comes earlier (my first came at 38 weeks) so that I can still Vbac.  It was a really hard decision for me to schedule the C-section, but I know that my mental health has to come first. This pregnancy has been so hard. I still remind myself daily that it’s okay to have made this choice.

There is no doubt that this has been the longest pregnancy ever. Some days have been devastating.  My husband and I have had to rethink our dreams for having three children. Nothing has been settled yet, but it makes me tear up just writing this. I envy the women on the street and in the grocery stores who tell me how much they loved being pregnant… and sometimes I even have to remind myself not to throw things at them.  The thing that keeps me going now is that sometime, somewhere down the road, I will actually hold a baby in my arms. And let’s be honest, it helps that some people in the HG support group have it worse off than me. Yes, I recognize it sounds terrible, but the truth is, I just think that if they can do it, so can I. HG is hard, but it’s limited to 9 months (or so I’m told).  There is an end date, and there’s an awesome baby to go with it.

If you think you are experiencing HG, get some help: 1) Go to the ER and get hydration; 2) Advocate for yourself with your doctors – some of them are better about HG than others; 3) Do your research, but take the meds; and 4) Find a therapist – you can’t, and don’t have to, do this on your own.  You got this Mama. I know it’s hard, but you got this.