It's been a while since I've last added any legitimate entry into the Blog, and Xina said that I need to keep up. So here I am. Though I prefer to write about Amelia, this one is about me.
Honestly, I haven't felt up to much lately, and blogging was about the last thing I felt like doing. When Amelia was transferred into her current pod and she stabilized that week, I myself hit a wall. I started thinking about the years down the road, the long term consequences of the medicines she's been on, the unknown and unpredictable results of the problems she has had, from the brain bleed to her lung disease to her ROP and trying to guage how much money these things would require to deal with.
We'd been in the NICU for 9 weeks at this point, and I was tired. I'd been to her pod all but 1 day and I was tired. I was tired of making the drive. I was tired of the hospital parking, tired of traffic in an un air conditioned car, tired of hospital food and hospital lights... tired of beeps, alarms, new medicines, and new complications. Tired of heels pricks, blood drawings, lab results, babies crying and babies dying. Tired of worrying, tired of leaving, tired of the waiting the guilt and the helplessness. And tired of the blogging and keeping people up to date.
I have been barely showing up for work since Amelia was born. Thank goodness my boss and my working peers are so understanding and have picked up the slack and covered for me without a wrinkle... I owe special thank yous to Marc, Britt, and Natalie, and I don't know what else I'd feel if I didn't have their support from the office.
But I found myself relatively depressed and worn out during that first period when Amelia seemed to finally be in the clear. Luckily, it was at that time that Xina was able to drive and stay at the hospital on her own and we started splitting time; I've taken about 4 days off from the hospital since then, but she has been willful and strong during this time and pulling us through. She's eager to get to the hospital and take care of our baby, and conscientious about everything from bills to feedings to taking care of the dogs. (though she did get on me for making "Debbie Downer" comments too often for her tastes.)
The truth is, I'm still tired and still worried. But I feel better. Amelia is awake a lot more now, and we can hold her everyday... and that helps a lot. I can interact with her and she has the brightest (blue? we're still waiting) eyes you've ever seen. She wakes up around her assessments (8am and 7pm usually) and stays awake for 30 minutes to an hour (and comes and goes randomly between those times for shorter stints). It's tiring work trying to keep her occupied so she doesn't start grabbing tubes and stuff... but it's rejuvenating each day.
Please, no comments. I don't express these things for validation from Dr Phil or my wife or friends. Amelia's health, for good or ill, is my validation, and I have every right to feel what I feel. But the blog is a living diary and I would like to let other NICU parents know that they are not alone in being in a place that I was hanging out in. I, thankfully, have my strong wife, a beautiful recovering daughter, great friends and family and great work mates to keep me going. The nurses and doctors are patient, reassuring, and comforting. They say it takes a whole village to raise a child... apparently it takes a whole village to keep him sane, too! ("sane" being a relative term, of course).
Now, about my daughter: not much has changed from Saturday. Her gas wasn't bad, but not good enough to wean her today. So it'll be another day of status quo. She lost a few grams, and weighed in at 1530gs last night. She will still get some lasix, but didn't need the blood transfusion they were thinking about giving her. Her lungs are still pretty messy and she does need unclogging regularly, but she SATs better with less enriched O2 and she takes more of her own breaths. When she's being moved and unhooked from the ventilator, she doesn't drop her SAT level as much as she used to and she recovers better. All those are tiny signs that she's tad bits better from day to day within the realm of her major problem.
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