And Then The Rollercoaster Began...
Updated: Apr 3, 2020
Before I was rushed into the OR, my husband I had a short period of time where I was placed in a birthing room. It was there that he was able to quickly call our immediate family and a few other loved ones. But while he was making calls, a team of doctors came into the room and approached my bedside. Although I’m sure that they introduced themselves as NICU residents, I honestly don’t remember hearing it. But their words I’ll NEVER forget. One by one they began to share statistics that all seemed gloomy but ended them with “but 26 weekers do great.” They told us to not expect her to be born breathing or to continue to breath on her own for long due to Respiratory Distress Syndrome which effects about 85% of all micropreemies. They explained that she would likely be intubated immediately so that her lungs don’t tire out. We later found out that she was born breathing on her own but was intubated because of the hospitals policy (which later caused an issue that we will touch on a bit later). They went sharing that she had a 50% chance of having a PDA (Patent ductus arteriosus) which is a persistent connection between the large blood vessels near the heart. The connection is normal for a fetus but should close when a baby is born and begins to breathe. Another doctor explained that because her veins were so tiny she was going to need to umbilical lines so that they could have access to administer medications. She would likely need another IV for emergencies like surgery or cardiac arrest which are fairly common for micropreemies. One of the greatest and most deadly risks to a micropreemie is sepsis. Micropreemies have immature immune systems and face many invasive procedures in the NICU, which can allow bacteria to enter the bloodstream. About 40% of micro-preemies need antibiotics to treat bacterial infections. Micropreemies also have fragile blood vessels in their brains which can rupture easily. The doctors went on to explain that 1 in 4 end have that spontaneous bleeding of the brain called an Intraventricular hemorrhage (IVH). Most cases of IVH resolve on their own, but some babies need surgery to help drain the extra fluid. And lastly, as they were preparing me to make the journey to the OR, a NICU nurse introduced herself and offered to step in and finish sharing information about what my baby could face as she walked with me to the OR. She began explain that since micro-preemies have immature digestive systems, their intestines are susceptible to an infection called Necrotizing Enterocolitis (NEC). In NEC, the linings of the bowels become infected, begin to die and often need to be treated with surgery. One would think that this talk was a long one but it was only 5 minutes from start to finish. So much information was being thrown at me and I was completely overwhelmed.
And as I sat holding my baby’s finger for the first time, looking at her umbilical lines and touching her hair all of those risks came back to me. As much as I wanted to be excited I was completely overwhelmed with fear. But hearing her nurse talk about how much of a fighter she was and how sassy she’s been with them gave me all the strength I needed to fight WITH her. I went back to my room that night feeling like I had entered into the fight of my life. I fell asleep that night looking up information about micropreemies and looking for success stories for 26 weeks gestation and younger. The following day, as I was talking with a lactation consultant about my difficulties pumping, a doctor from the NICU came to see me and told me that Reign had just experienced a pneumothorax (lung collapse). Remember I shared that despite her breathing on her own the hospital still intubated because of their policy? Well my strong-willed daughter insisted on breathing at her own tempo instead of allowing the ventilator to breathe for her. As a result her lungs tired out and one completely collapsed. Two days later she was taken off of the vent only for the other lung to collapse 3 hours later. I was discharged from the hospital a few days later but before leaving I wanted to spend some time with my baby. The hospital social worker came to see me and was talking with me about what a journey this would be. She described it as “rollercoaster of events and emotions”. She couldn’t have been more correct. Leaving the hospital empty-handed was far more than my emotions could take as my husband & I had experienced that too many times before. I cried the entire ride home and spent the night counting down the moments until I could get back to my baby girl. Just 12 hours after going home I was right back at the hospital and began to experience that rollercoaster as the reality of the last week set in-- I had just had my baby 3.5 months early and the NICU was about to become my new second home.
An hour easily turned into twelve as I navigated this new journey of motherhood in the NICU. From holding her for the first time to changing her diaper for the first time and eventually to bathing her for the first time, I felt more involved in the process. While learning all that I could about the journey she would need to undergo to be released, I was also feverishly preparing our home (life really) for her homecoming. But it became increasingly more difficult to leave her there as the days went by. At about 6 weeks old she began to trial off of oxygen and shortly thereafter she began bottlefeeding. I often tell NICU moms that both trialing off of oxygen and bottlefeeding are when the true rollercoaster of emotions begin. By this point they’re about 31 weeks or more, they typically have hit 4 lbs and you can see yourself taking them home. But in addition to their physical growth, they start making great strides in development only to regress. For example, Reign’s first room air trial (taking off her oxygen and allowing her to breathe on her own) lasted for 8 hours, then 17 hours, then 21 hours and then she needed to stay on oxygen for 2 straight days because she had tired out. I remember crying for hours and feeling like she would never come home. Thankfully when they took her off of oxygen that last time she stayed off and didn’t require oxygen anymore (within the NICU). And a week later they decided to let her try bottlefeeding. I can be honest and say that bottlefeeding was our biggest challenge yet and our biggest barrier to graduating the NICU.
Our NICU required that babies be off of oxygen for a week before beginning, feeds must be FULLY consumed within 30 min and they must be able to consume 90% of their feeds by mouth. Even if she consumed 31mL of her 33mL bottle, it was seen as a 0% in the system. Reign was (and still is LOL) a VERY slow eater so she bled the clock for every second BUT was able to consume her whole feed by mouth within 2 weeks. But while we were working on getting her to eat the whole bottle by mouth, we also had to work on her waking up for every single feed. During the day I was there so she was always more alert but it was during the night shift that she was unable to wake. Nurses took their vitals, change their diapers and then fed them every 3 hours. So that gave the babies a chance to wake up before being fed and initially Reign didn’t do too well with being disturbed. Thankfully our NICU had cameras for every baby so I was able to see her even when I wasn’t there. After about a week of them saying she didn’t wake up at night I decided to start setting alarms for her feeds and watching the camera when it was time for feeds. Nurses turn the cameras off while theyre taking vitals and changing diapers. So I was able to time how long the camera was off and then see if the baby was taken out of the crib for a feed or if they hooked her NG tube up to her feeds. Twice I saw Reign wide awake yet the nurse hooked her up her feed instead of bottlefeeding her. I was able to screenrecord that and take it to the charge nurse. I could only assume she spoke to those nurses and those who cared for my baby after that because I never saw that again. In fact I saw one nurse trying to waking my baby up by singing and playing just so she could get her bottle. After about 3 days of her waking up I decided to check in and see what her percentage was and it was 87%, just 3% away from what we needed for them to pull her NG tube out. My husband & I celebrated because we knew it was almost time for her to come home!! But then the next day she had an eye exam which are VERY tough for micropreemies. After that she wouldn’t stay awake or take her bottle at all for 2 days straight and we were right back where we started. I remember having to go into the private nursing room so I could just weep and let out my grief. It began to feel like she was never coming home and hopelessness set in. It became harder to go see her for a few days because I was afraid of the news I might receive despite her having passed her car seat test. But she bounced back and within days she was at 90%!! Amazing right?! I had a baby shower the following day and we were excited to tell everyone that she was coming home within the week. Upon our arrival to the hospital the next day residents met us bedside to tell us that she would in fact come home the NEXT DAY!! We got so excited that we called everyone close to us to share the news that our baby was FINALLY coming home to us.
The day of our “homecoming” came and we showed up with gifts for our nurses, her car seat cover and the perfect outfit to bring her home in. But her nurse greeted us with a sad face and my heart sank. She explained that Reign had experienced bradycardia (a sudden dip and slowing of one’s heart rate) and that she wouldn’t be able to come home for an additional 24 hours. As I sat and held my baby I cried one of the deepest, most sorrowful and painful cries I’ve ever experienced. Some may say “It’s just another day. You’ve already been there so long.” But it wasn’t about the day for me. It felt like hope was repeatedly being stolen from me. We rode home that night in a deafening silence but returned the next day cautiously optimistic. Her nurse came with the same news...another brady and this time they wanted to do bloodwork because she hadn’t regularly experienced these in the NICU. That meant ANOTHER 24 hours and another blow to our already battered hearts. I couldn’t take much more so I stayed long enough to feed her and I went home. My only comfort was preparing and rearranging her room (for the 10th time LOL). So I threw myself into doing just that for the rest of the night into the early morning. My husband had taken off of work for the week in anticipation of her homecoming so we were home all morning bingewatching tv (Stranger Things in particular) when the phone rang. It was one of the NICU doctors letting us know that Reign had another brady and that she was calling in an attempt to spare us another day of heartache. Although emotionally exhausted, I greatly appreciated her kind gesture. We went back to watching tv and decided to go visit later in the evening after the traffic from a parade held downtown was over. As we were on our final episode of Stranger Things I got ANOTHER call from the NICU, this time from a different doctor, saying that she was writing up Reign’s discharge papers and that we were free to take her home. I stared at the phone in disbelief as I recalled the conversation just hours earlier but quickly yelled “WE ARE ON THE WAY!!” I hung up the phone to see that it was after 7 pm, a truly STRANGE call at a very STRANGE time while watching STRANGER Things LOL. We threw on our clothes and rushed to the hospital.
The moment we had waited for was finally happening and I realized I had forgotten her NICU grad outfit and the rest of the nurses thank you gifts. But none of that mattered! OUR BABY WAS COMING HOME!!! As I began to change her diaper and clothes in the NICU for the last time, the previous three months flashed before my eyes. The rollercoaster was finally over and we were leaving there to begin our new life together as a family. We said goodbye to all of the nurses and her little buddies within the NICU as we were taken downstairs to the car. That first drive home was one of the most amazing and reflective experiences of my life. What had I learned from this? What could I have done differently? Was she really ok now? Did I really have these “mom instincts” ppl keep talking about? I did and in the following months, I would learn just how vital they would become in saving my daughter’s life.