Been awhile, huh? We've been just a tad busy but I really have meant to start updating here as well. I update on both my FB page and Ruthie's page and that really is all I've been able to manage to keep up. All her photos are on those pages - I'm not even going to attempt to upload a deluge of photos here...just a few. =)
Things are going pretty well, I suppose. To sum up the last five weeks, Ruthie has had two echocardiagrams, a cranial ultrasound, at least 2-3 heelsticks or finger pricks per day (bless her little heart), a HepB vaccination (against my better judgment right now), a caffeine jolt every day at 3pm, numerous vitamins through her NG tube, a boatload of breastmilk and milk fortifier (gotta up those calories so we can grow!), and more ups and downs than I ever want to recount.
The great news - she has NO brain bleeds. I cannot tell you how wonderful this is and from what I've been told, a little uncommon for such a young preemie. Her last echo revealed an almost-closed PDA valve (in the heart) and though they can still hear a slight murmur, has not caused any issues in a few weeks. It should close on its own if it hasn't already. This is a valve that is usually closed by the time a baby is born at term.
She has been steadily gaining weight - some days a lot more than others, and there were a few scary days when she was steadily losing. Since she's been taking good amounts of breastmilk though, she's been gaining well. As of last night, she has officially gained one pound since birth! I can remember feeling so ecstatic when she reached 2lbs (how sad when we think 2lbs is big, lol).
Her not-so-great news for now is that she has a fairly rare lung infection that they don't see too often in the NICU (so says the infectious disease dr). She was put in isolation on Monday night, more so to protect the other babies than b/c she is sick. It's a strange bug, called sakazukii or something weird like that. It causes the secretions in her lungs and throat to thicken and it's hard for her to breathe, so they suction her often. She hates that like I can't even explain - gets hoppin' mad when they do it, lol.
On that similar note, she is getting quite the reputation for being aggressive when they bother her and she doesn't feel like being bothered. She has a very accurate aim and will smack and hit the RTs when they draw blood or work on her vent tube...or do anything else that she thinks is not necessary.
There are times when they bother her and she just screws up her little face and cries (though with the vent in, there is no sound) - that just KILLS me to see her like that. I know it's all necessary but I can't stand to see her poked and stuck and if I could take it for her, I would in a millisecond. It's not fair that any baby, much less one so tiny, should have to go through what she's gone through in the last 5 weeks. She's such a little fighter and it's getting a lot easier to tell when something is not right with her.
When I walked in last Friday, I immediately saw the different machine and knew she had had to be re-intubated again (back on the ventilator from the c-pap). Don't judge me, but I had asked NOT to be called if they had to re-intubate. Strange as it may sound, I would much rather walk in and see it than to see that number pop up on my phone. To see the hospital calling is never a good thing and it induces an anxiety attack for me. So she was back on the vent last Friday and I could tell she was not herself. The RTs drew blood and she just laid there and took it....not Ruthie at ALL. She hardly moved all day long and that is most definitely not Ruthie - she is usually very active, especially when they have her on her back. She will wiggle around and throw her legs over until she repositions herself the way she thinks she should be.
She is starting to feel some better, but yesterday she was still not herself. She is on two different antibiotics for the infection and maybe they are zapping some of her strength. The nurses and RTs don't think she is getting sick yet (prayerfully, ever) from this infection, so that is encouraging. Her CO2 is up (60) so they upped her vent rate to 20 (from 12) to see if it would help. Upping the vent is never good - the lower the rate, the quicker she can come off, and the quicker she comes off, the quicker this infection will be gone, b/c the tube induces more bacteria.
Everyone said what a roller-coaster ride this whole NICU stay would be, but we never understood the true emotional aspect of it all until we started the downward slope. I know we will come back up, but as great as the ups are, the downs are that much more painful. We have had friends go through this and have sympathized along with them, but you will NEVER be able to empathize unless you've done it. And I pray none of you ever have to. I have pregnant friends that I just BEG to take it easy b/c I do not want to see them in there next to us. It is not worth anything you think you have to do to risk the chance of an early arrival. We have been on this journey for 38 days now and there is still a long road to go....she would only be 30 weeks on Saturday if she were still in utero. While I know she is meant to be here in the way she has been, it sucks to watch your baby endure things she would never have had to deal with if she were still cooking. We will never know what really happened that night, but I am so so so grateful for this little girl. We prayed for her for so long and her pregnancy was one of the scariest rides I've ever been on, but I know she was meant to be here. I can't wait to see what God has in store for her in her life - she is a true miracle.
We are doing okay - it's hard to travel so much back and forth and feel like you still aren't even going anywhere. It's been VERY hard financially and we still aren't sure how that's going to pan out. Jay is working more hours than anyone should have to, and it's super discouraging for him b/c he has no time to spend with her when he works so much. He is supposed to talk to someone today about a possible new job situation - pray with us that it would be exactly what we need to get him off night shift and out of that place that clearly could care less about its employees. (Three years and no hire? No thanks.)
It's hard to find time to spend with each other some days....by the end of the day we're both exhausted and he has to go to work and I just want to collapse in bed. Both of us have her on our minds constantly and it's hard to function on normal daily tasks. All we want to do is sit with her (read: stare at her adoringly). Sometimes it feels like we're functioning on autopilot.
So....all that said, I will try to update this blog often with her progress. She does have her own FB page, made by a friend, that is updated daily - you can find it under "Ruthie Miller's Page!"
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