First of all, I am sorry. I know this is probably scary and painful for you. Your little arms are tied to the bed to keep you from removing the tubes. Those tubes are your life line, but I know they must make you uncomfortable. The one in your mouth is feeding you; the one in your nose is called an endotracheal tube and that is helping you breathe. There are little monitors on your chest that are keeping track of your heart rate and that little glow on your foot is called a pulse ox monitor, it’s keeping track of how much oxygen is in your blood. The little heart on your stomach is tracking your temperature and the tube near your stomach is called an umbilical arterial catheter. That tube will keep you from having to be continuously stuck for blood draws. I am sad to say that your first haircut was done by the doctor, they had to run what’s called a PICC line; this will give you those antibiotics that will help you get better. He did give us the hair that was cut off.
The wash cloth on your head is keeping the light out of your eyes; it seems to keep you calmer. Those machines all around you are telling us how comfortable you are. Your cries are silent, but when we are standing next to your isolette, any time a tear builds up in your eyes, we know that the alarms are soon to follow and we react to make you more comfortable. We stand here looking at you, marveling at how beautiful you are despite all of the tubes and machines.
This is not the way it was supposed to be, but we are thankful that you are here, since we know that it could have gone differently. See when you were born, everyone in the room was supposed to celebrate. I should have cut the cord, and given you your own life, to breathe the fresh air. When the doctor handed me the scissors, I didn’t want to take your life line away. I knew that with Mommy you were safe, without her you would struggle to survive. I had to cut it because you couldn’t stay in there forever. You made a small sound, which sounded like a cry, and the doctor said that was a good sign.
Next, you should have been placed on mommy’s chest, so you could bond with her, right away understanding that she was Mom and the crazy one taking videos and pictures was Dad. But they took you away, and said we would be able to see you in about an hour. They brought you to a room and placed all of these tubes and wires on you, the ones you see right now. It wasn’t a surprise, but no one could emotionally prepare for this.
There is chaos in your NICU pod. Many people are coming and going. The people in the scrubs with the yellow gowns and masks are your nurses. They are taking care of you, suctioning out the fluid, keeping your temperature normal and keeping an eye on your monitors. The people in white coats are your doctors; you’ll see a lot of them because CDH is so complex. There’s the Neonatologist with her resident and fellow, she is in charge of the NICU. Standing next to her is the doctor that’s monitoring your CDH care; he’s one of the best in the world. Over the course of the night, other doctors will come by. Your surgeon will stop in to get a progress report. He will be the one to fix your birth defect and get you on a road to recovery. The infectious disease doctor just stopped in- we call him doctor doom and want him to go away. The cardiology team thinks your heart is working fine but, like the rest of them, they are only cautiously optimistic.
A social worker and psychologist also stopped by to see us, but we told them we don’t really need them, we have this under control. There will be a man in a black uniform later. He will come to introduce you to God. He will baptize you and bless you in case Jesus decides he needs another angel. But we’re not going to talk about that.
So that just leaves “us”. The two people by your side not wearing scrubs, or white coats, or face masks. Although your doctors and nurses change, we do not work on shifts. We are here around the clock. We do wear a uniform, it’s called the NICU parents outfit. We wear wrinkled cloths that have been sitting in a suitcase or stuffed in a tiny locker. Around our eyes there is a constant ring of redness. When we stand at your bedside, there is a slouch in our backs, mine from sleeping on a chair for 4 days, and Mom from the pain of birth and that same chair. We are optimistic with your prognosis, but we also understand that it could change minute by minute. We won’t leave.
We are different from the doctors and nurses, and right now that might not make sense to you Owen, but soon you will understand.
That person standing there next to you is Mom; she is the one who holds your little foot. She touches you so you can feel her warmth and comfort. She talks to you, and when other babies cry, she lets you know that it’s alright. She takes pictures of you, because despite your wires and tubes, she knows underneath it all you’re a beautiful and strong little boy. She wants to hold you so bad, to make all of your pain go away, but she just can’t right now. When she is standing in front of you she will not cry, she will not let you see the pain she endured to have you. I can see how much joy you bring her.
I am Dad. I’m the one who puts my finger in your little hand. I love the way you squeeze it. Your strength keeps me going. It helps me believe that this will all be okay someday soon. I try to sing to you at night. My singing is a little pitchy. My voice cracks as I sing, “Bedtimes here, it’s time to rest, good night my sleepy friend.” I try to mimic the toy we used to play on mommy’s belly. The books said it would give you a sense of comfort and familiarity while you’re in the NICU. I never believed it, but you seem to calm down when we play it.
Your Mom and Dad want you to know who we are. We’ve already decided that if we only get to be your parent for 1 minute, 1 hour, or 100 years, that we were going to enjoy it and no matter how many people come in and out of your life, we will always be Mom and Dad.
Owen, you are now 4 days from your 10 month birthday. In everyone’s eyes you are a healthy, growing little boy. They see pictures of you eating, and playing, videos of you crawling around the house and screaming Mama and Dada. We know that doctors and clinics and studies will be a part of your life. And that you’ll have to face a minor surgery and some testing. We’ll face every challenge together as a family.
I can’t always predict your future, but the one thing that I can promise you is that your mother and I will be there for you. We’ll make sure you understand what you’ve gone through and how lucky you are. We’ll tell you stories about those other little ones who fought with you, but lost the battle with CDH.
As I reflect back on those days in the NICU I am inspired by your strength, awe struck by your resilience and so very thankful for having the chance to be your Dad. I would go through it all again. The day I first saw you in that Trans NICU, I asked the nurse if I can hold your hand. They said it was okay, that they encouraged me to do so. I put my little finger in your hand and you held on, you squeezed tight. I’ll remember that day for the rest of my life. Its’ the day I knew this would all be okay.