So, after 9 hours of labor, I decided to go ahead and get an epidural because I had this fear that if I didn't do it soon that I would miss the window for it somehow and be forced into a natural birth…yeah no thank you. Once the epidural started working I was feeling amazing. It was less than 5 minutes after the anesthesiologist left that I started texting my sister-in-law and then all of a sudden I glance up from my phone and see about 6 doctors in my room. Now UAMS is a teaching hospital so I didn't think much of it at first. Then, they start turning me all different positions. Apparently my baby's heart rate had dropped significantly and was not coming back up. So they ask me to get on all fours- which is not so easy when you are numb from the waist down- and an OB that I had never seen before kneels down and whispers, "OK sweetie, we are going to have to do a c-section, OK?" Let's see, after 9 hours of back labor, heck yeah get this baby out of me. Oh, I should mention that just before my epidural, I urged my husband to go get breakfast downstairs. He and my dad just got back upstairs when the doctors began wheeling me to the OR. At this point I'm still on all fours heading for an emergency c-section and all I can think about is if my butt is covered. Then I hear a doctor yell back at my husband, "you coming, Dad?" He better be. We get to the OR and they say, "OK can you slide over on the table?" I look at them and meekly say "I don't think I can move so well." When in my mind I'm saying, "are you freaking kidding me, morons?" Less than 5 minutes later I hear a tiny cry. I look at Josh. His face is so white. I didn't think much of it because my husband really hates blood. Then they are wheeling me to recovery and I realize I didn't get to see my baby. Where is she? Josh comes to my bedside and says our girl wasn't breathing well and was pretty blue but they have her under a heat lamp and on oxygen. They also want to run a few tests on her. Oh God. A couple of hours later, they wheel my girl in but I can't touch her. She's in a tiny plastic box. They let me glance at her a minute and then take my baby away from me. Birth plan? Skin to skin contact? Throw all that out the window. When you have a critical baby, the doctors don't give you a choice, she is their baby now. My body was in shock. I shook uncontrollably. Fast forward a few hours and I'm finally in a real room on the 6th floor and my precious girl is in the NICU on the 5th floor. Josh tried frantically to be with both of us but I told him to stay with her. I kept pleading with the nurse to let me go see her but to no avail. I still couldn't move my legs. I was overdosed with the epidural, whatever they gave me in the OR, and the demerol and morphine in recovery. Caroline Elizabeth was born at 9:21am Friday morning and it would be midnight before I was allowed to make the trip to the NICU. I still couldn't feel my left side but my night nurse took pity on me. I remember her aide LaTonya saying "she just need to see that baby." Yes LaTonya, yes. I stayed with Caroline until 2am but just felt in the way in her tiny room with the nurse hovering over us. I stuck my hand through the small opening in her plastic box and stroked her tiny hand. This was my view of her. Look at those sweet little hands already holding her paci…I'm telling you, my girl is gifted.
Despite an ultrasound on her head the next day the doctors still didn't have answers for her enlarged ventricles. I asked why they weren't giving her any nutrition but got no answer just that they needed to run more tests. Then, Sunday morning at 4am I woke up to pump and Josh came in my room on the 6th floor. I could see he had been crying. His voice shook when he said, "if I knew something, would you want me to tell you?" I just stared at him and nodded. "The neonatologist thinks she has Trisomy 13." What? How could that be? He started crying and I just sat silent, numb. I was so angry at God. What was the point of all of this? How could God give us a precious gift only to snatch her away? Josh said they had drawn a complete chromosome test and would get the results later that day. So we waited and we prepared ourselves to say goodbye. This was not one of those "You give and take away but blessed be Your name" kind of moments. Nope. It was raw and ugly. I told God I was so happy I got to experience something that so many women don't but that I still didn't understand why He would allow this to happen. Then the miraculous happened. I went up to the NICU thinking it would be one of the last times I would see her. I cried and said I loved her. After awhile, we walked out of her room and met the doctor in the hallway. She said, "I'm so glad I caught you. The test results are back and her chromosomes are normal." So no Trisomy 13? No, thank You, God. She was still concerned with her brain and of course the cleft so she set up a transfer to Arkansas Children's NICU. The ACH Angels came to transport her and informed us we couldn't ride in the ambulance with her. We gathered all our stuff and drove to ACH and checked in but still did not get to see her for a few hours. Since Caroline didn't have a private room yet we couldn't stay the night with her. So, we reluctantly said goodbye and went to a nearby hotel.
The next day was magical. I was pumping when the neonatologist made her rounds and Josh got to visit with her. He told her we would really like for Caroline to receive some nutrition and he said, "my wife would commit felonious acts for the chance to finally hold her." She said "let's make it happen."
Finally, over 72 hours after her birth, I got to hold my Sweet Caroline. Though I have loved Caroline since that first positive pregnancy test, the love was made complete as soon as she was in my arms. I felt a peace that no matter what, she was mine and I was going to do everything in my power to give her the best life possible. Another good part of that day? Being moved to a private room so we would never have to leave her side. Yes, those are pajamas. The thing about being a NICU parent is you start to look more like a patient.
Our NICU stay was a bumpy one full of ups and downs. The 24 days spent there will forever be etched in my memory. It would be far too much to try to write it all now, so I'll try to flashback at different points in our journey. I will say I have never felt so many emotions or been through a more trying time in my life. However, we witnessed small victories and big miracles from our little warrior baby. We had another fatal, but thankfully incorrect diagnosis. After Caroline's first MRI, the neonatologist came in and said, "sit down, Mom." Something I learned once you have a baby, you no longer have a name other than "Mom" but that was just fine by me. Anyway, she said, the MRI showed brain abnormalities, including a "smooth brain" or lissencephaly. She stated matter-of-factly that Caroline would probably die in her sleep at about 5-6 years of age. Excuse me? I texted my parents to come right away. They came down to Little Rock every single day. I don't know what we would have done without them. I held my baby and cried and Josh went outside to process this new devastation. My parents arrived within an hour. It wasn't until much later that day that the neurologist came in to explain the MRI results. It turns out they got the results mixed up. Caroline didn't have anything fatal and certainly did not have smooth brain. The neurologist said her optic nerves are small and that opthamology would want to consult as she could have impaired vision. The resident came by for her eye exam and explained that sometimes when a baby has small optic nerves it can cause random eye movements that cannot be corrected. Great. He examines Caroline and determines her optic nerves are on the smaller side of normal but that they are normal.
I knew her eyes were fine. Here she is reading a book with her Papa. I told y'all, my baby is gifted.
So, what are we facing with Caroline? Well, in addition to the cleft lip and palate, she was also born with a condition called choanal atresia. This is a birth defect that involves a blockage in the back of the nasal passage. Caroline had it only on one side but it greatly impacted her ability to breathe and eat. She had to have 6 surgeries to finally fix it but more on that another time. She still has ventriculomegaly which we now know is due to craniosynostosis. This is a condition where a suture in the brain fuses prematurely- usually at around 12 weeks gestation. This condition affects skull growth and brain development so it has to be surgically corrected soon, again, more on that soon.
In other words, we have more answers but we still face many unknowns. We don't know how all of this will affect her mental and physical development but so far we are so encouraged by what we have seen from her. All we know is Caroline is a miracle, she is loved, and she moves mountains. I don't know why she has had to endure so much already but I am confident that God uses everything for good.
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