How Aberdeen is Doing:
She has finally gained some weight! Abby is now a whole pound above birth weight!!! She is still vomiting a fair bit, but now that she is actually putting on some weight, the doctors aren't quite as worried about it. She has started smiling a lot this week and even rolled from her tummy to her back during PT! It's been a week full of milestones! The doctors will want to make sure she can consistently gain weight on what will be our home feeding regimen before letting us leave, but it seems like that is now in the foreseeable future.
How We're Doing:
After waiting for three and a half weeks, we finally got into the Ronald McDonald House on Thursday. Which, if we weren't already, officially makes us "hospital people." For those not familiar with this wonderful program, RMH is an apartment-like set-up for people whose kids are in an adjacent hospital. They provide housing and some meals free of charge and really go out of their way to make things a little easier for families in difficult situations. Next time you see one of their donation boxes, I encourage you to drop in some change, as what they're doing is invaluable.
Because getting back to the house has been so hard, we've started discussing the prospect of moving somewhere in between Cincinnati and the base. So far, family and friends have been caring for our dogs (I've seen them a total of three times in the last four weeks), and we really miss them. Not being able to get home on a regular basis is taxing, and we simply don't think it's feasible to continue operating this way long-term. We're early in the process of looking into moving, but wouldn't mind help if anyone knows of opportunities to rent in the Springboro to Mason area.
Emotionally, this admission has been very different than our first. Getting Abby's feeds and failure to thrive under control has been a painstaking process, that has ultimately required a switch to straight formula. While it was something I suggested trying, and am thrilled is working, it's also very hard to accept that, as her mom, I couldn't provide her with what she needed. I already struggle with feeling like I somehow failed her while pregnant, and that I'm continuing to fail her even now. Genetics has assured us that this isn't the case, that her conditions were just something that happened, but I can't help but assign myself some blame. It's just hard. Both Jameson and I do our best to put a positive spin on things, as much for other people's benefit as our own, but sometimes we have to admit that it's just hard.
Jameson did some cathartic writing this week that he requested I share. It's hard for even me to read, but it's an accurate description of how we often feel, and especially how he feels as he tries to navigate splitting his time and attention between here and work. He's been an amazing dad and husband through everything, but I know the stress is starting to take its toll. If you pray for Abby, please pray for him as well.
From Aberdeen's Father
My daughter has craniosynostosis, hypertrophic cardiomyopathy with an outflow obstruction, a large aortic septal defect, a persistent patent ductus arteriosis, and a small ventricular septal defect. She had neurosurgery at 5.75 weeks of age. She has been fed through a feeding tube or an IV since birth. Her endurance is so limited by her heart condition that she cannot feed by mouth enough to live. She has lived in a hospital for 43 days of her 53 day life. My wife has lived in the hospital with her the vast majority of that time, which has involved CT scans, an MRI, dozens of echocardiograms, and screaming IV placement sessions, 0400 heel pricks for blood we know will hemolize before the test can be run, vomiting while food is pumped into Aberdeen's stomach, and other instruments of pain. I cried in the parking lot yesterday after telling my friend that I will likely be moving 35 minutes south of where we live to be closer to the hospital. I’m a grown man. My adrenaline is wearing off.
Everytime I am asked "how is your daughter doing?" "how is her mom doing?" all of the above runs through my mind. How do I give you a 25 second answer that ends on a happy note? How can I be honest about how we are doing 37 times a day without completely losing my ability to function in a work environment? "Well, she had brain surgery two weeks ago and we've been in the hospital for 3.5 weeks. Nope, her heart condition won’t be healed anytime soon.” Awkward pause, while the person figures out what to say… “But her head looks good,” I say to give them an escape. Then, rinse and repeat everyday hour of everyday for the longest 7.5 weeks of my life.
Aberdeen isn’t going to die tomorrow or this week, nor is she going to get better tomorrow or this week. I can’t put a bow on this situation for you that allows for a five-second CNN positive soundbite. Am I angry at God? Nope, not really. I knew (better than most) that this was a chance when we decided not to adopt and try to have a biological child. I’m fine with learning from this situation for the rest of forever. Did I push Bethany to have a biological kid? Sure did. Do I feel like it was my ego that contributed to Aberdeen’s problems? Definitely. Had I just been alright with however long it took to adopt we may not have been in this place right now. Does my lack of control (perceived or otherwise) make this even more difficult? Yep.
I was good at my job, but I am getting worse. I am like a drug addict who can’t shoot-up for ten hours a day, while dealing with billion dollar decisions. My temper is getting shorter.
And yet, like a high school student wanting to add a killer conclusion to my five-paragraph essay, I still want to give you a happy ending.
Jameson took this picture while driving back and forth from the hospital. Seemed appropriate.