I have to begin this update by saying I am insanely thankful. Our son is doing so, so well and I can’t even describe my gratitude. I feel incredibly lucky, and happy, and relieved. I am also incredibly grateful for the loads of emails and comments I’ve received in support. You guys aren’t just my community, you’re my friends. Some of you I’ve known for months, even years. I don’t care if we don’t know each other in person, you are my friends and I’m thankful for you and your support.
If you’re lost and have no idea what I’m talking about – the run down is that my water broke at 23 weeks, I was put on bedrest and the goal was to keep me pregnant until 34 weeks, at which point I would have to be induced. Life had other plans and I went into labor at 24 weeks. Scott and I’s son, Everett River was born weighing 610 grams. About 1 pound and 5 ounces. He came out fighting and hasn’t stopped. He is definitely my son. From the very beginning, he tore off his wires and cords, forcefully pushed the nurses’ and doctors’ hands away and ripped/wiggled the CPAP and NIPPV prongs out of his nose. He is feisty and I love him so much.
While 610 grams may seem very small, and it is, the fact that he weighed above 500 grams was great in terms of statistics. Babies born under this weight generally do not fare as well. He was in the 82nd percentile for growth, which is amazing.
When I had him, we were told we’d have bad days and good days. God, was that ever true. We had no idea what was in store for us. We kept our optimism but there were times it was definitely challenged. We’ve certainly had our ups and downs. We’ve had several scares, mostly infection scares. Then we had two necrotizing enterocolitis (NEC for short) scares. At one point they thought they’d have to transfer him to Children’s Hospital, where very serious cases are sent. We waited for some blood work to come back and were told if it didn’t come back improved, he would be sent to Children’s and would likely require surgery – that had a 50/50 outcome.
That blood work came back and it was better, he was better. He was actually completely fine. There is no relief like the relief from knowing your child is healthy.
Then there was another infection scare. He was breathing well with just the CPAP machine, which only provides oxygen. But he was having severe apnea and had to be re-intubated. They couldn’t determine why this happened but infection was the most likely suspect – but again, blood work came back and he was fine. He was back on CPAP within the week (except for at one point when the tube came out and about 15 nurses and doctors ran over, the attending physician had to be called in and they had to correctly replace the tube – all while I cried hysterically and hyperventilated while talking to myself…it was the most terrifying moment of my life).
This kid is strong. He is a fighter. Literally.
Yesterday when his nurse was adjusting the CPAP in his nose and changing his hat, he was pushing her hands away and wiggling all over the place. “Do all babies fight like this?” I asked her.
“No. Most babies fight, but not like him. I’ve never had to go home and say ‘Today I got beaten up by a newborn’ before.”
He is blonde all over and growing like a weed. Thankfully, I am a champ at breastfeeding. The fact that I’m pumping eight times a day and waking up every three hours helps.
I am happy to announce that today, he is 3 pounds and 10 ounces! He is on 21% oxygen, which is room air – it’s the percentage we breathe. The plan is to have him on 21% oxygen for 24 hours, then slowly wean him off until he is breathing on his own. Which will take hopefully about a week. Then, he has to master feeding. Then, he can come home!
We are so in love with him. In the beginning, the best we could hope for was the doctors to say “He is stable.” We’ve now been there for nine weeks. He is now better than stable. Now they happily tell us “He’s doing great!” The doctors and nurses taking care of him are amazing and so invested in seeing him do well. He gets closer and closer to breathing on his own, regulating his heart rate, keeping his blood oxygen levels up and taking lots of breaths consistently.
Everyday he gets closer to coming home.
The other day his doctor told us he could be home in as early as four weeks. Of course, that would be the absolute earliest if every single thing went according to plan. So we’re realistically hoping for six weeks, which would be right before Thanksgiving.
We have finally entered the stage where he is no longer so incredibly fragile. Don’t get me wrong, he’s still fragile and still has quite a bit to learn and overcome. But he is strong, he is healthy, he is growing. For this, we are incredibly thankful.