How I'm REALLY doing

I try really hard to keep a completely positive attitude on this NICU journey with Chase. I try to be strong for him, and have a positive outlook. I hesitate to share bad news, and try to hang onto enthusiasm over the baby steps in the right direction for as long as possible because sometimes I don't know when the next little bit of progress will come along to rekindle that fire.
Last night, in the car on the way home after some pretty bad news my mom told me it's OK to be real. I said I was afraid if I allow myself to be negative then more negative things would happen. I'm not trying to be negative, but for just one moment... one blog post... I need to be real.

Sometimes I hate it when people ask how I'm doing. I know everyone means well, and really I'm touched by how much support and genuine care people have shown our family through everything. But...I went through three years of infertility, planned a perfect home birth I was excited about, was excitedly counting down the days until my baby would be born at home, spent YEARS making every little decision, only to have all of that go down the drain. Now I sit by an incubator and watch a monitor full of numbers pleading with God  that this tiny miracle might remember to breathe a little better tonight than he did last night, pleading that none of the flashing numbers dip down again that hour, knowing that if they do my skin-to-skin time will be cut short as they assess him and determine if his care regimen needs to change. I wake up every hour through the night, hoping that he's OK, knowing that a bad news phone call could come in at any given time. My phone ringing is all it takes to make MY heart stop beating, my body to break into a nervous sweat, and my mind starts racing. How the Hell do you THINK I'm doing? I'm a new mother separated from my newborn. My baby is in NICU. I'm not OK, and I won't be until he's strong, healthy, and home.

Sometimes, I'm angry. I'm angry that my baby has to get poked and prodded every day. I'm angry that he has to go through tests, blood transfusions and exams every day. I'm angry that his little body looks battered and bruised from all the needle pokes. I'm angry that he is so bothered by all the things taped to his body all the time. I'm angry that he's not home in mama's arms, which is the ONLY place new babies belong. I'm angry that I have to ask permission to hold my own baby. I'm angry that I don't always understand exactly what's going on and what is best for him. I'm angry that I didn't get to spend those first few minutes of his life with him, as I was knocked out and he was rushed off to NICU. I'm angry that we can't be together all the time. I'm angry that he gets a revolving door of nurses rather than a team that gets to know him. I'm angry at my body for not cooperating, for letting this happen, for failing him. I'm angry my c-section isn't healing properly. I'm angry that the pain involved makes it unsafe for me to drive, and that I'm so reliant on rides and other people.

Sometimes I'm sad. My heart breaks for him every time he has to go through yet another traumatic experience. He's only three weeks old and he's been through way too much already. I'm sad that I can't protect him from all this. I'm sad that I am missing out on so much because I can't be at the hospital 24/7. I'm sad that he's in pain.

Sometimes I'm afraid. I'm afraid of infections. I'm afraid of him getting sick. I'm afraid of feeding issues. I'm afraid of apnea. I'm afraid of brady spells. I'm afraid of all the things that keep babies reliant on machines for longer, which in turn keeps them in the hospital longer. I'm afraid of RSV, I'm afraid of the flu. I'm afraid of making wrong decisions and him suffering for it. I'm afraid of letting him down and I'm afraid of not being good enough.

So, when you ask me how I'm doing, and I tell you I'm fine... know that it's a lie. It's a big fat lie. I'm going to continue saying it, in hopes that it eventually becomes the truth. I'm going to keep trying to be positive, and I'm going to continue to have faith it will all eventually turn out OK. I'm going to continue believing that Chase will come home strong and healthy someday, and I'm going to keep dreaming of the day I can hold my son and not stare at the flashing numbers on the screen to know when he needs help breathing. I won't allow the anger, sadness, and fear completely take over... but they are always there, sometimes in the back of my mind, and sometimes front and center.

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.