I am starting off this post with a disclaimer. We are a “short-term” NICU stay family. Eloise struggled with hypoglycemia. I am not writing this to sound whiney, but to share our story. This was something that I did not know could occur post birth. Families fight for hundreds of days and some never get to come home. Justin and I feel like we won the lottery each day we look at our healthy now 1 year old girl.
Everything was prepped and ready to go, when Eloise arrived Justin counted her fingers, her toes, and our delivery doctor said she looked great! I had a fairly healthy pregnancy, so neither Justin or I expected any complications to arise after delivery. During my labor my mind wandered to all the different things that could go wrong… her hear rate could drop, the cord could be wrapped around her neck… anything! I struggled with anxiety during pregnancy, still do. I worried a lot about things that could go wrong. But once she arrived, was crying and placed on my chest I thought phew – we made it. Nothing could go wrong now.
Social media is dangerous, I perceived how my after labor experience should look like based on what I saw on online. I had the cute swaddles, announcement board, going home outfit ready for the picture perfect first few days of life. But reality set in a few short hours after I gave birth birth.
After you give birth you experience a night similar to Scrooges in the Christmas Carol. You have many different visitors throughout the night… you’re kinda groggy, not sure what is going on, etc. Nurses push on your stomach, squeeze your boobs, check your vitals and check your baby. We has just settled into our recovery room (11 pm) when our first check-in occurred.
At that time our nurse thought that Eloise’s breathing sounded odd, she sounded congested and thought she might still have fluid in her lungs. She suctioned her a bit and a second nurse (pediatric nurse) came in. She listened to her lungs and thought it would be better if she was monitored in the nursery with them for a while. At first I thought “Great! I have been awake and in labor for 24 hours, a few hours of peaceful sleep with my baby being cared for? Sounds good to me!” I fell asleep immediately and was woken up at 4am when all the lights were turned on in our room, waking Justin and I up.
3 different people stood in our room and explained to us that Elle was experiencing signs of hypoglycemia, very low blood sugar, and would not be coming back down from the nursery. She had been transferred to the Neonatal Intensive Care Unit. I felt so powerless. I couldn’t say “no thank you I grew this gal for 9 months and I’d like her back.” I nodded and acted as if i knew what all of this meant. I cried when they left the room and Justin assured me that we would get up there first thing in the morning, talk to the doctor and see what was going on.
When the sun rose, we ordered breakfast as soon as we could and around 9am we made our way up to the NICU. Justin rolled me in the wheelchair past rooms of families and other tiny babies. When we got to her room I could have jumped out of the wheelchair and grabbed her. She was swaddled in the hospital blanket, with a few wires coming out to monitor her heart and breathing.
I was scared to touch her. For the first few hours we were there I let the nurses do everything – change her diaper, feed her, and even hand her to me while I was sitting. Finally, one offered that Justin and I change her or feed her. We looked at her like “we can do that?” At that moment we took over total care for her. We spent all day there, breaking for lunch and a quick nap… remembering I had just given birth the night before and my body was a little recked. The NICU did not have the best amenities for moms who just gave birth. The bathrooms had no supplies for moms and I carried a little plastic bag with me full of the things I needed.
When we went up there there after dinner we were shocked to see that an IV had been placed in her arm. She had maxed out on the oral sugar gel, so an IV was needed to help keep her steady. We were not progressing forward and the hopes of her coming to stay with us in our room for the night were shattered. During the day (every 3 hours) the nurses would prick her foot to test her blood. It broke my heart and by the end of our stay both of her feet were covered in scars from the pricks. They would test her blood sugar level before and after she ate. The goal was for her to have her bottle and that her blood sugar would stabilize on its own, but her body wasn’t processing the nutrients and would rapidly drop.
She felt so fragile to us. Changing her diaper, holding her, trying not to set off any sensor or alarm was so difficult. We learned how to care for and snuggle our baby not being able to move more than 2 feet from her bed where she was attached to everything. But we held her all day long. We only had one reclining chair in the room next to her, so we took turns.
The worst day.
When it was time for me to be discharged from the hospital it couldn’t have happened quick enough. I had hopes that Elle would be able to come home with us, I put on my cute going home outfit, did my hair and even managed some makeup. I thought by putting myself together it would make everything better. Instead we were told that she still wasn’t meeting the expected levels and she needed to be fully weaned off her IV drip before leaving. So I moved in. At that moment I made the NICU my home. I pulled out the slippers I brought, put on my robe, Justin set up the IPAD with our Youtube TV and I refused to leave. I couldn’t imagine leaving until I had to.
I had to leave. We had to eat dinner. We needed to go home to get more things for our new stay in the NICU, I needed to breathe fresh air. So we left, just for a few hours. Downstairs I sat at valet waiting for Justin. I was surrounded by other moms, moms with their newborn babies. I sat with my bags and no baby. She was 7 floors away hooked up to wires, and an IV and I couldn’t take her with me. I tried not to cry in front of the new moms. I didn’t was to scare or upset anyone. I couldn’t get in the car fast enough… Justin and I cried the whole way home.
2 hours later we came back for the night I was determined to spend it with her. I was refreshed, ready to be with her. At the door security looked puzzled at both Justin and I. We had not been informed of the Covid policy and after 7 pm and before 10 am only one guardian was allowed on the unit (unless you are still a patient). As of 11am that day I was no longer a patient. I sobbed, I told them I was just discharged earlier in the day, that no one has informed us of the policy and women working the desk looked like she wanted to hug me. She told us it would be allowed, but only this time.
During the days Justin and I would spend the entire day with her. We watched the Office, read her books, played “Sweet Eloise” By Glen Miller for her, I pumped, we told her blood sugar to pull it together, and we lived by the 3 hours checks. We hoped to see the numbers we needed and to see the IV number drop. At night Justin would drop me off and I would snuggle her until the night nurse would tell me to go home and get some sleep, that she would care and love her while I was gone. Then I’d wait on a street corner in downtown New Haven for Justin to pick me up and then we would go home and sleep next to an empty bassinet waiting for morning to do it all over again.
Eloise was born on Tuesday and Saturday morning as we were getting ready for our routine. I got a call. Eloise could come home! I think I screamed and ran around the house. We were told that she would most likely be discharged around noon, so to freshen up, and be ready to take our baby home. When we got there we had to do a discharge orientation and then she was ours.
There was no better feeling than walking out of the NICU with her, it felt illegal. As we walked out we passed a couple around our age entering, Justin and the dad met eyes and nodded. Everyone in the NICU was waiting for that moment, to take the same walk we did. We passed rooms of tiny babies, other moms and dads waiting for this same moment, this feeling and I cried. I was so happy, but also so sad. Justin and I left a piece of our heart with those families. It was not lost on Justin and I that other families do not get to experience the same walk we did, that spend hundreds of days rather than our less than a week.
I still cry thinking about this.
After our discharge Eloise was healthy, and still is. We have had a few extra doctor appointments and a screening for Cystic Fibrosis which came back negative. Other than that she is healthy girl. The doctors in the NICU told us that it was common for babies to have unstable blood sugar after birth, that their body just didn’t figure it out yet and needed a few days to adjust. This was not something I could have ever imagined would happen.
If you’ve made it this far, thank you for reading our story ❤️ Please consider a donation to March of Dimes.