Neonatal Cardiac ICU

After we saw Jack settled in his CVICU room we headed home to the girls. That night we rested, finally rested. Now we started our new way of life with a baby in ICU recovery during a pandemic. We could not both be at the hospital at the same time, so Kevin took the first day after surgery. It was Saturday and my parents came over to help with the girls so I could rest and recover from childbirth. It was the first day I hadn’t seen my new baby. It was an odd feeling, really just uncomfortable, not having my newborn son with me. Things at home were mostly the same but I knew he wasn’t there, I felt him missing, a piece of me missing. But I needed the rest, and I really needed the time with my girls. Sunday was Valentine’s Day and I headed up to the hospital first thing in the morning to spend some time with my itty-bitty warrior valentine.

Drive downtown, cry as I go, park in the garage of Legacy Tower, go through COVID-19 security check, take my pumped milk to the milk bank in West Tower, walk back over to Legacy Tower and up to the 18th floor, check in at security, wash hands, finally head back to see Jack, get quick update from the nurse, give him a kiss, then sit and pump; now, all that’s out of the way, I can sit with my boy. This was my new normal. Every other day for the foreseeable future. I cried on my drive downtown every time I made it. I cried because I didn’t want to leave the girls, I felt so guilty dropping them at school and leaving them to be picked up by someone else. It felt unfair to them. And I cried because the only way for me to see my newborn son was to drive an hour downtown and visit him in the ICU. I didn’t want to do it; I didn’t want to HAVE to do it. And so I cried, every single time I made that drive. I sat with my handsome new valentine and watched his heartbeat, and held his hand, and listened to all his machines telling us his every movement.

He scrunched his face up in pain and my heart fell apart. I quietly talked to him to sooth him. Jack’s eyes fluttered open and he looked at me; I kept talking and he listened, his eyes searching for me through the clouds of newborn and pain medication. He settled and fell back asleep. It was time for me to head home, the hardest part. It felt physically impossible to walk away from him. A storm was coming, and I needed to get back home to my girls.

The storm. A historic Texas snowstorm blew across our city that night and we woke up to a winter wonderland. But that meant the roads were not drivable, Kevin couldn’t get up to the hospital. We tried to enjoy the snow with the girls, but my heart ached. My baby boy was up there all alone. Sure, he had his nurse who was very sweet, but he didn’t have his family. The chaplain facetimed with us so we could see Jack and talk to him. It was so kind and sweet and just what we needed to keep going.

And then we lost power, and it stayed off for 50 hours. It was freezing, the girls slept in our bed to all keep warm, I pumped in the living room and I could see my own breath. I was miserable. All I could focus on was pumping milk for my warrior, keeping my girls warm and safe, and how grateful I was in that night that Jack wasn’t at home. He was warm and safe and well taken care of at the hospital. My parents rescued us the next day, they had power and dad navigated the roads to come get us. Day three without seeing Jack. I missed him so much, but I was comforted knowing he was better off where he was.

We got to facetime him again and see him with his newly closed chest. He was still swollen but looking better. Finally, on Thursday Kevin drove me downtown and I got to see my son. I talked to him and held his hand; he was very groggy but didn’t seem to be in too much pain.

Jack was healing nicely. The next day when Kevin got to the hospital Jack had gotten his breathing tube taken out and was making little cooing sounds. After he had been checked out by all the right doctors Kevin got to hold his son for the first time.

I hated not being there, I hated missing that precious moment. Kevin soaked up every bit of that snuggle and held Jack for as long as he could. The next day meant it was my turn to hold him. He was fussy that day, his pain meds had been decreased and he was uncomfortable. I worked to sooth him in his crib. Then I finally got to hold him and once he was in my arms he settled and took a nice nap.

My whole body warmed with him in my arms. It was healing for both of us, that was where he was meant to be. I hated putting Jack down. More than I’ve hated anything in my life. And it never got easier, no matter how many days I did it, no matter how well we settled into our new routines, it always felt completely wrong, like a horrible mistake, like a failure. Not that I felt like I was failing or making mistakes, it was just that same sensation of wrong, doing something so wrong you feel it physically but you aren’t sure how to fix it. And when I would leave Jack I would go to my car and sit and cry for two minutes. That was the time I allowed myself, just two minutes, every time I had to leave my son alone at the hospital. Then it was time to be strong again and get back to my girls. Jack’s days were up and down as he healed and continued to wean off the pain meds. We were told it is very common for heart babies to get addicted to the morphine, but they were working very hard to decrease Jack’s morphine and manage his pain in other ways. He showed some withdrawal symptoms but fortunately it wasn’t too bad. A few days later Jack was having a great day, he was very happy and awake, so we decided to facetime his sisters.

It was a precious and bittersweet meeting. Josie pretty much screamed and ran away but I can’t really expect more from a two-year-old. She struggled to understand that baby brother wasn’t in mommy’s tummy anymore and seeing him through a phone didn’t really compute. Laynie was adorable, she talked real low so she wouldn’t scare him and when she looked at her baby brother she got tears in her eyes. She told us, “I just love him so much and I just want to hold him.” My heart squeezed in my chest, I wanted that too, I wanted her to be able to snuggle him. Jack started showing his personality more and more, he would smile in his sleep and when I would talk to him.

He was ticklish on his feet and loved having his head rubbed. All of which are actually still true today! On March 1st, the day before his due date, when he was three weeks old, he got to eat for the first time. And I was there to give him his first bottle. He did amazing, drank like a champ and took the bottle like he’d been doing it all along.

I also changed Jack’s diaper for the first time that day. It was extra hard to leave that day because for the first time since he was born, I actually felt like I was doing the job of mom. That day I felt important to his care, and he was already three weeks old. Two days later Jack is rocking his feeds, he’s off the oxygen, and they have taken his chest tube out. We’re making the big move to the 22nd floor, step down here we come!!