Wednesday, October 16, 2013

Our NICU Journey: Week 1

If baby Chase had stayed put, today would have marked 31 weeks. Instead, he is ten days old.
Ten days. I can't believe how much life has changed. Less than two weeks ago my daily agenda revolved around little projects around the house, getting things ready for Chase, and counting down the days to mid-December. Now it's revolved around getting back and forth between NICU to visit him, and pumping milk every two hours.  
Nothing can prepare you for something like this. Through our TTC journey and then through this pregnancy, we just didn't think about "what if he comes super early?" I don't think anyone does, because it's one of those things that you just don't expect to happen to you. But it did. 
Sometimes I don't know how I'm supposed to feel. I am overwhelmed with gratitude that he is here safe, and that we will be able to bring him home- even if it's not as quickly as I would have liked. I love him so much. But sometimes, generally in the middle of the night, I just feel angry. I feel angry that he's not here with me, angry that he's having to go through all this, angry at the situation. I don't understand how it's decided who gets healthy babies and who doesn't. I try to push those feelings out and be thankful for what we DO have, thankful for how many things ARE going great with him... but it's not easy. Being separated from him feels very unnatural. 
The first time I got to hold him I have to admit- I was a little scared. Certainly not scared enough to not jump on the chance when it was offered to me, but I was nervous. He's so tiny. His little arms and legs... there's just nothing to them. I mean, all of him weighs less than 3lbs. 3lbs is tinier than I pictured it. I was afraid that he wouldn't be happy, that he would just want to be put back- and afraid that I'd do something wrong and hurt him. All of those things went through my mind but at the end of the day, I wanted to be close to him and knew these fears were something I
needed to just get rid of. I have a son now, and he's going to need me to be there for him- there's no room for fear in that. (as someone I greatly admire told me this week: there is not room for fear in parenting.) 
Holding him for the first time, which happened on October 12th, was the best feeling in the world. He just melted and snuggled in, and for an hour- life was perfect. It was natural, he was exactly where he belongs. We get to do that every night, and if he starts to gain weight better will add in mornings too. 
I'm amazed at the progress that can be made one baby step at a time. In a week, he moved off the ventilator onto a CPAP, and then gradually weaned him off of that onto a regular nasal cannula. That didn't go super smoothly so they put him back on CPAP, and then a high flow cannula. As of today, he's back to a regular nasal cannula. He had so many tubes and wires going on the first couple of days and several of them have since come out. His PICC line will come out in the next day or two as long as he continues to tolerate his feedings well. I know we still have a long road ahead, and these things are often two steps forward, one step back (as we learned with his oxygen...) but the idea of him needing LESS machines makes me really happy. As much as I can accept the PICC line, cannula, and feeding tube as things that are helping him that he needs, I know they can't be the most comfortable, and if he's strong enough- I'd rather he not have them. He's such a trooper. 
Seven weeks or so- best case scenario. He has at least seven weeks left in NICU. I hope every week goes by as quickly and overall smoothly as this one has. 

Where we're at now: Chase is having acid reflux after his feedings, which he may or may not grow out of, but we aren't overly concerned about it at this point. His biggest hurdle is that his brain isn't reliably telling his body to breathe- so he tends to stop breathing, which in turn makes his heart rate nosedive, and he has to be moved/ roughed up to stimulate him and then he comes back around. His lungs in and of themselves are just fine- he just forgets to use them. His weight dropped down to 2lbs 10.5oz, but is picking back up. He's at 2lbs 14oz now, which is just an ounce below his birth weight. The more weight he gains, the more we get to hold and touch him so that's a really big deal. 

As for me and Jon... we are hanging in there. It gets overwhelming and we have our moments of pity parties, for sure. Jon is working hard (as always! He's such an amazing husband and father) on getting things prepared at the house for all of us to come home. Since everything is so torn apart and I've been a little out of commission lately, we've been staying at my mom's. I'm anxious to get the house put back together and settle into whatever our new normal is going to be. Plus it's a shorter drive to the hospital and I'm pretty sure we're spending a fortune on gas alone. I'm mostly focusing on eating, drinking, and pumping like crazy. Soon, I will be staying at the hospital during the days and being as present as possible for absolutely everything. A couple things have gotten in the way of that this week- recovering from my c-section, inability to drive, lack of cooperation from my body, etc. but Chase needs me, and I need him. 

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