One of the most wonderful and most painful things about this journey with Daniel is getting to know other people with medically complex children. Those of us who are able spend hours, days, weeks, and months with our children in the PICU.
You can’t leave your PICU room for very long. If you’ve been here for any length of time, you know that anything can happen any time. There are few things more terrifying than coming back to the desk from lunch and seeing “PICU CLOSED” and wondering if it’s your baby having a crisis. All of us can agree– if something happens, we have to be there. No matter what, no matter how hard it is, we HAVE to be there.
It is tricky because you also HAVE to leave the room sometimes. It is really easy to get into this weird PICU fugue. The doctors and nurses start to feel like enemies inflicting torture on your baby instead of the life-saving allies they really are. The fluorescent lights begin to oppressively bear down on you, like a head-ache inducing weight on your shoulders. Every beep, every alert sets you on edge, and you can slowly feel yourself unravel. If you let it go too far without leaving the room, you explode at anyone close to you for impossible-to-explain reasons. No one else can understand this better than another PICU mom.
When Daniel was first born in July, I met one such mom. She introduced herself as “T,” and her baby boy TJ is also a single ventricle heart warrior like Daniel. By the time I met T the first time, Daniel had already had the Norwood surgery and was on the mend. She and TJ got to go home before Daniel and I did.
When Daniel was admitted the second time at the end of October, I quickly recognized T and re-introduced myself. I was sitting in the Ronald McDonald House lounge on the 9th floor, reeling that Daniel and I were back here again. I was worried sick and in denial. When I saw a familiar face, it was an instant comfort. T and I began talking and catching up. She and TJ had gotten to go home for a month, but then he started turning blue and needed to be readmitted at the beginning of October.
She and TJ had been back for three weeks by the time Daniel and I returned. TJ had just had surgery and was on ECMO for the second time. ECMO is life support. It is like a ventilator, but for the heart. Sometimes babies’ hearts need to rest after surgery, and ECMO allows them the time they need to recover. Here’s the thing– babies can only be on ECMO twice. You can’t go on three times. If your baby requires ECMO again, there’s nothing they can do.
When I heard all the difficulties T and TJ had been through, I was in shock and scared for them, but T never wavered. She was like a rock– steady, confident, steadfast. I said, “Wow, I’m so sorry. I hope everything turns out okay.” She said, “It will. I’m not leaving this hospital without TJ. When I go home, he is coming with me.”
Over the next four weeks, T and I became good friends. We would meet in the hallways, and she would ask how Daniel was doing. Many times, all I would need to do is sigh a certain way or say, “You know how it goes.” She completely understood. No one gets it like another heart mom. We were two unlikely friends united by tragedy. Our babies were going through untold agony right in front of our eyes, and there was nothing we could do about it. All we could do is stand bedside, comfort any way we could, advocate to the nurses and doctors in rounds, and pray. Those are HUGE things, but in the moment they feel like nothing as you helplessly watch your baby unravel.
Shortly after Daniel and I arrived back in the PICU, another baby was going through hell. It is impossible to not know when things are going badly for someone. The doctors and nurses run to the patient’s room. The whole unit gets hushed. Everything else is put on hold while they work on the baby in crisis. The baby was in bed 16. I met her mom, grandmother, and great-grandmother in the lounge. The baby girl had been life flighted to Children’s Memorial Hermann shortly after birth. T and I listened in horror as the grandma described how the baby had gotten a horrible sore on her hand when her IV from the previous hospital had leaked, unbeknownst to the nurses. Then she had aspirated when drinking a bottle, and she had “coded,” or gone into cardiac arrest. She had somehow been put on ECMO for a third time, and doctors were in the process of taking her off life support. The baby girl later passed away later that night after taking her off ECMO.
After that, all the other moms and I were devastated. Not only were we sad for the sweet baby girl and her family; it was like watching our worst nightmare unfold right in front of our eyes. TJ was on ECMO at the same time when this happened, and I had just been told that Daniel was in heart failure because of his coarctation of his aorta. I almost went into a state of depression, especially when Daniel was moved to room 16 two days after that baby girl’s death. Room 16 had been synonymous with fear for weeks as the baby girl had struggled and finally died.
Even though TJ was still on ECMO, T never wavered in her strength and confidence that TJ would recover. She meticulously checked TJ’s IVs every day to make they weren’t leaking and to make sure he wasn’t forming sores. She lived at Children’s Memorial Hermann. She slept on the bench in his room almost every night. She would repeat, “TJ is coming home with me. When I leave, he is coming with me.” She never left his side. She was here 24/7. She inspired me to be strong when I was feeling scared and weak. I called my mom and told her about T, and all I could say was, “She is amazing.”
TJ successfully came off ECMO. He eventually came off the breathing tube, and was just on C-PAP. He was doing so well. T texted me a picture of TJ on Thanksgiving. We rejoiced when I told her another one of our heart moms at CMHH got to go home FINALLY after being in the hospital with her baby boy from birth to 3 months of age. T texted me, “TJ and Daniel are next!” We planned on playdates later on when the boys got older. We vowed to keep in touch. We talked about starting some kind of foundation to support other heart families up here.
Then I saw T in the hallway three days ago. She was leaned against the wall, arms crossed, eyes stormy and scared. “How’s TJ?” I asked. She replied, “TJ had to be re-intubated. He developed an arrhythmia tonight.” By this time, Daniel had had to be re-intubated twice, so I figured they would figure out what was going on with TJ and get him back on the path to healing.
The next day, I texted T and asked how TJ was doing. She said he had had a rough night, and he had started swelling up really bad. She said the surgeons were meeting right then to discuss him. At this news, I was filled with anxiety. It was almost unreal. How could this be happening? Why TJ? Why T?
A few hours later, I heard another parent say, “There’s a crisis in 4.” When I walked by her room, all the doctors were gathered around. Later in the day, the door was closed, and no vital signs were on the screen outside his door.
I don’t know why this has to happen to these precious babies. I will never forget you, TJ. I never met him, but I got to know him through the heart of his mother. You have touched my life forever. I will never forget what an amazing heart warrior he was or his incredible mother who fought beside him.
Please pray for T. Pray for comfort and peace.
“After you have suffered a little while, the God of all grace, who has called you to his eternal glory in Christ, will himself restore, confirm, strengthen, and establish you. To him be the dominion forever and ever. Amen.” (1 Peter 5:10)
***This art is by a social worker here in the hospital. Right after I published this blog, Daniel started withdrawing from the fentanyl, and his heart rate climbed to 197 with a fever of 101.9. It was really scary, especially as I had just spent time writing this blog post. The social worker was in the room at the time. After the moment passed, I gave her the link to this post so she could understand my head space during the withdrawal moment. She came back later and said she had read it and had created this for me in response to both reading it and seeing me hold Daniel earlier. I am touched beyond words. 💗