I don’t normally make posts like this anymore – but today, on World Prematurity Day, I’m going to share a bit about my son.
Because I had hyperemesis from the start of my pregnancy, until my c-section, as well as pitting edema that made me almost incapable of walking, I spent a LOT of time wishing that my baby would hurry up.
And then he did.
I had preterm premature rupture of membranes (my water broke early), and within 24 hours, I was a mom. Only – it was wrong. Everything was so wrong. He was rushed to the NICU before I could even meet him, but I heard how tiny he was. I didn’t get to meet him for hours. The first glimpse of my son was from the tiny screen of a digital camera.
That little crib that was at the end of the birthing room, with the cute little hat and outfit, it sat empty, never to hold my child. A week passed, and I had to go home alone. I’ll never forget the feeling of being wheeled down the very long hallway, arms empty.
A month passed. He was in the low 3 pound range. The neonatologists decided to discharge him. We signed the paperwork. The thing is, it was kind of unspoken, but we knew he was probably coming home to die.
There was just one road block in that little plan. My sweet little baby is a fighter. As he was being weighed, which I guess is part of procedure, he had lost weight. And then he crashed. The discharge was immediately reversed, and even though the hospital had a level III NICU, they had to do an emergency transport to another hospital.
Seeing him in what looked like some sort of space ship, probably as close to passing as he could have gotten was such a nightmare I wasn’t even sure it was real. This couldn’t be happening, could it?
The new hospital was an hour away. I remember the first doctor, the one that brought him back from the brink. He told me that he used every single trick up his sleeve. He had nothing left. He didn’t know if we even had the weekend. But thanks to him, to the new NICU team, we did. After another two months of low and lowers, we brought him home. Finally. And I thought I could breathe again. I was wrong. He was readmitted in less than a week. And every time he came home, he would be back within days.
Eventually this cycle did stop, and he was able to remain at home. Taking care of him was not something we were ready for. He had a g-tube, he had meds every 3 hours, 24 hours a day, he wasn’t really growing, it seemed like we were constantly at the hospital having his blood checked. That was okay though. He was alive. With all of my being I believe he is here today because of the team at the second hospital. I owe them everything.
As he’s gotten older, he has gotten more stable. In his case though, it wasn’t just prematurity, he is disabled by his rare disease (pseudohypoaldosteronism type I MTOD). I hate that he has to suffer, but am so thankful my little boy is here with me. He has a rough go of things constantly, he’s still very small, but he’s home. He actually turns 2.5 years old today. He’s sweet, smart, adorable, and so much fun. He doesn’t talk, when he gets sick it’s a very big deal, and his disease is so rare, that we really don’t know what comes next. There is no foundation or organization. We don’t even know, what came from him being a preemie? What’s from the PHA?
My heart is with all of the moms that were wheeled out of their hospital rooms without their baby. In spirit I am with you all, that right now, spend every spare moment you have in the NICU gazing at your baby through the plastic walls of their isolette. Just waiting for it to be time to see if you can help take their temperature, or change their diaper. I promise, for most of you, the wonderful day WILL come when you don’t need permission to touch your sweet baby. And it will be a day you never forget.
My heart breaks for all the moms that had to say their final goodbye. There just aren’t words.
If you have a friend that gave birth to a preemie, today would be a great day to reach out and let them know you’re thinking of them. It will mean more than you know.