It was a short night and an early morning. No matter how you slice it, our sleep was not the recommended 8 hours. Somehow, the three and a half hours that I managed to get were great. Once my head hit my pillow I was out until my alarm was going off at 3:30 A.M.
The drive up to Omaha was a blur. I remember thinking about a million things. Realizing the day we’d meet our baby girl was finally here was surreal. We had been preparing for months. To finally have the wait down to hours was exciting and terrifying at the same time. It was more of the unknowns that terrified me. What was the defect going to look like, what was the extent of her damage/paralysis going to be, when would surgery be, how would surgery go, when will I get to see her, when will we get to hold her, how long will our hospital stay be? These were all very valid questions that ultimately our baby would be the key to answering. Everything would depend on how she was doing.
We pulled into the parking garage at Methodist/Children’s Hospital and found a spot rather quickly; no surprise at 5:15 A.M. Spencer looked up and noticed the parking space we were in was appropriately marked with the letter C. I grabbed my phone to snap a picture and took this as a good omen and smiled to myself before heading into the hospital.
We reached the short stay unit, met our amazing nurses, and went through all of the typical admission questions and procedures. I was back in the OR, on the table, spinal in place, and in 15 minutes, give or take, our baby was here. Yes, it was that fast. Our baby was born at 7:43 A.M.
I got to see her! The nurse showed her to me right away before taking her through the glass doors where the NICU team was ready to start assessing her. I got a glimpse of her spinal lesion. It was big, really big. Much bigger than I expected it to be. It also had skin covering it, which was a relief. We were told during our fetal surgery consultation in Colorado that her defect was open, meaning the spinal nerves were exposed to amniotic fluid and were likely being damaged in utero, so to see skin covering the lesion was a surprise and a relief!
Spencer went over and was with her as soon as they gave him the okay. He came back a few minutes later with tears in his eyes. Immediately I thought, “Oh crap. Here we go, what’s wrong?.” But as Spencer got closer to me I quickly realized he had happy tears swelling in his eyes. “She is kicking her legs and moving her feet all around. It’s crazy!” That was some of the most amazing news I have ever heard in my entire life, but I also reminded myself that movement doesn’t always mean mobility. Mobility is multifactorial, but this was a huge win for us and for our baby no matter what it means for her future mobility. Having lower extremity movement is a great place to start!
Once she was stable, the neonatal nurse practitioner brought her over to me while my incision was being closed. Though I was unable to hold her, we did get some very sweet face-to-face snuggles that I will cherish forever. I am so thankful for those initial moments that we were able to have! After recovery the nurses wheeled me through the NICU where I was able to see her. We also had our priest, Father Barvick, and several family members attend a baptism at her bedside in the NICU.
Dr. Puccioni, the pediatric neurosurgeon, assessed our baby shortly after she arrived. He was very surprised, shocked actually, that she wasn’t a paraplegic. Based on the size and location of her lesion, she should be paralyzed and have no movement below her waist. Dr. Puccioni said there was a chance that the repair could damage her spinal cord more and she could lose the movement that she does have. Needless to say, we upped our prayers even more at that point.
So, at just barely six hours old, we handed our daughter over to Dr. Puccioni and his team to repair the defect on her back. In all honesty, it was probably a good thing I had my own recovery post c-section to distract me from what our baby was going through. Dr. Puccioni came into my hospital room and shared the amazing news that her surgery went well, she didn’t lose any of her function, and he was hopeful about her future. Neurosurgery will closely monitor her to watch her brain ventricle sizes and need for a shunt. We continue to pray that her ventricle size will stabilize and she will not need a VP shunt.
Talk about a whirl wind of a first 24 hours of life! From the second she was born she has made it quite obvious that she is as determined as she is strong, and she is awfully sweet, too!