Upon learning they are expecting a baby, everyone always says they just want a healthy baby. That was my hope during my pregnancy with Eisley. I just wanted a healthy baby, born at full term, that could be placed on my chest right after delivery, and could come home with us after a couple of days in the hospital. I’d already had the crazy-delivery-baby-in-the-NICU experience, so surely, lightning can’t strike in the same place twice, right?
After learning that Eisley had spina bifida, I had to go through a grieving process. I grieved the baby that I thought she would be, and I also grieved the normal delivery experience that I so desperately desired. I would have to deliver her by c-section, she would undergo surgery right away, and she would likely stay in the NICU for several weeks.
That was a hard pill to swallow.
Looking back on Haven’s NICU time, I see it through rose colored glasses. It was not fun in the moment, but it was where we experienced our first memories with her. But as warm and fuzzy as it seemed in hindsight, I didn’t want to experience it ever again.
As time went by in my pregnancy with Eisley, and I had time to process, I got used to the idea of another NICU stay. After my prenatal care was transferred to the children’s hospital, we got to take a tour of their NICU (which felt swanky compared to Haven’s smaller NICU), and I began to be excited. As we walked by the pods separated by sliding curtains, with vinyl armchairs next to the isolettes, I could picture myself sitting by her bedside. Even though delivery was still months away, I felt closer to her, knowing that this is where we would have our first memories together.
After Eisley was born, via c-section, she was taken to the NICU to get settled in, and the neurosurgeons performed various examinations and scans to understand the best way to proceed with her back closure surgery. Originally, we thought she would have her surgery the following day, but they had an opening that afternoon, so she went in for surgery at seven hours old.
During surgery, the neurosurgeon, with the help of a plastic surgeon, placed her exposed spinal cord back in the spinal column, closed the area at the base of her spine, and placed a shunt-a tube that is inserted into the ventricle, or fluid-filled space in her brain, and drains it into her torso. The shunt was necessary because Eisley has hydrocephalus, or excess fluid around her brain, as many people with spina bifida do.
After surgery, Eisley had to lay exclusively on her belly to allow for her back closure to heal. Plastic surgery was worried that because the skin over her back incision was so taut and delicate, it could tear open and cause infection. Neurosurgery was worried that the skin on her head, stretched over her shunt, was so taut, that it might break down and cause infection there. As a result, she literally had one position she could lay in-on her belly and with her head turned to the right, so that there was no pressure on her shunt-and for many days, she could only be carefully lifted and held about a foot above her bed, while her bedding was changed out. It was so difficult to see her so uncomfortable and just wanting to change positions, but we could not help her get comfortable.
After I was discharged from the hospital, I spent most of the day at the hospital with Eisley, and the afternoons and evenings at home with Haven. Having Eisley in the hospital was hard, but spending so much time away from Haven, who was just 19 months old at the time, was also really hard. No matter where I was, I felt like I was neglecting someone.
And then there was the pumping. Any mom who has breastfed-whether nursing, pumping, or a combination of the two-knows how time consuming and how much of a labor of love it is. I had to exclusively pump for Haven while she was in the NICU and for a few weeks after, until she got the hang of nursing, and let’s just say it was not my favorite season of life. Because Eisley was not able to be held for several days, I had to exclusively pump to protect my milk supply until she could nurse. At three days old, she had an NG tube placed, so she could receive my breastmilk without having to nurse.
By four days old, I was allowed to carefully hold her, straight enough for her back incision to be protected, and upright enough to help drain some fluid from her head, as she was dealing with some pretty intense swelling, but not too upright so there wouldn’t be too much fluid draining and have it leak out of her back incision. We were only allowed thirty minutes of holding time a day, and it was heaven to feel her skin against mine. I loved that I could finally, if only for half an hour, be a physical comfort for her.
First time holding her post-surgery at four days old. She was so swollen for several days.
As for her movement, we were happy to see that she could move her hips, knees, and ankles (and later, we would see even her toes move, but during her NICU stay, we did not know if she could move them). Babies with spina bifida are often born with foot irregularities-sometimes clubbed feet. Eisley did not have clubbed feet, but she did have excessive dorsiflexion of her feet. She basically rested the tops of her feet against her shins, and her foot could not move past about 90 degrees. So, while she was on her belly, the bottoms of her feet could almost rest flat against her bed, and she would often push off and wiggle herself to the top of her bed. Almost every doctor and nurse who came to see her would be very impressed by her movement. Physical therapy made her little foam splints, with a strap that went around her ankles, and another around the arches of her feet, which provided a little bit of a barrier so she would not pull her feet up so far.
For the most part, Eisley’s NICU stay was smooth sailing, with one exception. At eight days old, the incision on her belly, where they had placed the bottom end of her shunt, began to leak. This was concerning because if it was leaking out, bacteria could get in, cause infection, and make a new shunt and another surgery necessary. At ten days old, they tapped her shunt-meaning they drew out a sample of cerebrospinal fluid-and sent it for testing. If it grew bacteria in a certain timeframe, it was a good indication that there was an infection. Thankfully, it came back clear after a couple of days, so her shunt was fine, but she did have to start a round of antibiotics, just to be safe.
At nine days old, she was finally healed enough for me to try to breastfeed her. I was able to manage to get her into a safe position for her back by reclining in the chair, laying her on top of me, belly to belly, and resting her head in the crook of my elbow. It was a little awkward, but I was so over the moon that she took to breastfeeding right away that I didn’t even care.
At this point, we had settled into a routine. Every day, I would say goodbye to Haven (always hard), get to the hospital around 9, make my way up to the NICU, wash up, hand over my cooler bag of milk I had pumped and frozen the night before to the nurse, and say hi to Eisley. We would settle in to nurse, and I would soak in the snuggles and try my hardest not to fall asleep-or at least to not let any of the nurses see me sleeping while holding her. I will forever be grateful to one nurse who told me later that she came over to check on us, saw we were sleeping, and let us be because we looked so peaceful and happy.
After breastfeeding/snuggling/sleeping, our nurse would help maneuver Eisley and all of her cords and wires back into her bed, and I would head down for lunch in the cafeteria or the Subway in the hospital. I would usually call Josh and update him as I ate, and ask how Haven was doing. On some days, Josh, his mom, my mom, and Haven would come up to the hospital to eat lunch together, and I loved getting to see my big girl during those times.
After lunch, I would head back up, and breastfeed/snuggle/sleep some more. If Eisley was peaceful in her bed, sometimes I would pump instead. I will also be forever grateful for a nurse who was also a lactation consultant, and petitioned with the neonatologist to have Eisley breastfeed “ad-lib”, meaning I could feed her whenever I wanted to, rather than having to stick to the NICU three hour schedule.
It was also during these days that I became friends with the mom whose baby was staying next to Eisley. It was so wonderful to talk to someone who was going through similar things-pumping, trying to spend time with our older children, advocating for our babies. We would listen in through the curtain when the doctors did rounds on the other baby, and rejoice when there was good news, and pray when the news was not good. Sadly, her baby passed after we left the hospital, but I will always remember what joy and encouragement they both brought me during that time. She blogs about her baby’s life and what she has learned from her at My Preche.
By sixteen days old, Eisley was finally allowed to lay on her back, which was a huge step toward coming home. I couldn’t get over how cute she looked on her back, and you could see on her face that she was so happy to be able to see the lights on the ceiling.
At seventeen days old, she was able to start wearing clothes, and move from her radiant warmer (an open isolette that had a heating element above to keep her warm) to a crib. That was a really exciting step. The next day, she had a test called a VCUG to determine if she had any urine refluxing from her bladder to her kidneys. People with spina bifida usually have various bowel and bladder issues, as the nerves controlling your bowels and bladder are located at the end of your spine, so they wanted to make sure that her kidneys were not being damaged by reflux. She had just a bit of reflux to one kidney, but not enough to cause issues.
At twenty days old, we stayed the night with her at the hospital in preparation for her to go home the next day. We were very excited and ready to take her home that day, but unfortunately we were not able to. We needed to talk to urology one last time, but logisitics did not work out to meet with them that day. So we went home without her one last time.
The next day, Eisley was 22 days old, and we finally got all of our ducks in a row at the hospital, and she was allowed to come home! I’m sure that bringing home a typical baby is wonderful (although I’ve never experienced it), but let me tell you, since I’ve done it twice now, bringing home a baby from the NICU is an amazing feeling.
As I write this, we are about to celebrate one year home from the NICU, and no other hospitalizations for a year, which is somewhat uncommon with spina bifida. We are so thankful for this year that we have been blessed to have Eisley healthy and happy at home.