We received a call from the NICU at 5 a.m., which by itself is enough to make my brain go into over-imaginative hyper-drive. I've grown to dread NICU calls, but calls coming in at 5 a.m. are almost guaranteed bad news. Somehow, I just don't think a 5 a.m. call will be to inform us our daughter has developed the capability to poop solid gold nuggets, thus drastically helping pay for her medical bills.
No, this morning's call was to inform us Zoey had to be placed back on the respirator, since her sleep apnea spells were occurring too often and the little girl was, frankly, becoming exhausted.
This kind of news always seems to come with the proviso that steps back like this shouldn't be seen purely as a negative. Nurses and doctors routinely remind us each preemie baby situation is different, and no one care template works for any two babies. It's all just a great, grand balancing act with expected steps forward and back.
But it's all annoying and frustrating, regardless. I could reassure myself 100 times each day that Zoey going back on the respirator isn't necessarily a bad thing, but it just underscores how insanely precarious her situation is day-to-day, or even hour-to-hour.
We sat down with a social worker today who started us down the additional seemingly impossible path of paying for all this medical miracle work. At the end of the meeting she asked how we were coping, and then she suggested we try to work out a schedule to help us better sleep and recuperate.
It's good advice, at least as far as the words go, but putting together such a schedule seems laughable on its face. In the first place, my wife can't drive until her c-section incision heals and, speaking as the guy who dresses that gaping wound every morning and evening, I don't think she'll be driving any time within the next month. Therefore, getting to the hospital is basically an impromptu family affair, unless we manage to secure a babysitter, which is itself a rather murky undertaking. Each day has so far been a remarkable exercise in improvisational logistics.
Sheer exhaustion is another major player in all this. I managed, at most, about 45 minutes of sleep last night, and what sleep there was was haunted by incubator dreams and Finn's passing, to say nothing of the financial calculations ringing in my head in a seemingly endless stream. Focusing on actual freelance writing work when I can steal away even for an hour is almost an exercise in futility.
We have to remind ourselves daily that the last couple weeks and the upcoming three or four weeks have been and will be the hardest of this whole ordeal. Gradually, things simply have to get better. When I think back to the first three days, it's almost downright shocking we managed to pull ourselves through that inky blackness. I'd likely remember it all only as a blur of activity and emotion if I hadn't written it all down while it was still fresh in my mind.
Hopefully, tomorrow will begin with good news. If not, it's not like we haven't had a lot of practice dealing with the alternative lately.
Posted by Ryan at January 13, 2011 08:35 PM | TrackBackHi Ryan. I was directed to your blog by a follower on twitter who listens to Hugh Hewitt and is in this gang of like minded ruffians with my husband. his twitter handle is Mr. Fastbucks, but for the life of me I can't remember his name. At any rate, I've been in a similar situation. Our son, Ian, was born at 26 weeks in March 2009. 86 days in the NICU and then on oxygen until he was 8 months old. He is doing fine now. It is hard to visualize a healthy "normal" baby coming out of all this, but you will get there. It is all about creating a new normal in your life and take things day by day. What Mr Fastbucks didn't know was that my starter husband and I had triplets at 22 weeks in 1996. Back then, they didn't even try to save them. We sat there helplessly and watched them die. In many ways, that was easier than what you are going through. We had no hope, but you did have hope for dear sweet Finn. and then you had that hope crushed. Now you have to summon the energy and will to keep that hope alive for Zoey, plus keep life normal for Aiden. There are no good answers, because everyone's NICU journey is different. Blogging helped me tremendously, so I'm glad you are doing that. FWIW, I drove 6 days after my c-section. We had no family here and no way was I not going to see my baby. Probably not the best thing to do, but my husband new better than to take those keys from my hands. Go at this with a fierce, fighting spirit....it helps.
Posted by: Amy Rapp at January 14, 2011 08:02 PMHey Amy, thanks for taking the time to comment. It always helps to hear stories from people who pushed through similar situations. It really does help to be reminded we're not somehow unique to this grim drama.
Normally, my wife would be driving, if it was just a regular c-section. But her incision became infected, so they had to open her back up again. She most definitely can't drive with that open wound. I can just about imagine what first responders would think upon seeing that wound if Heaven forbid she got into a fender bender.
We're pushing through as hard as we can, counting each day off as a blessing, as difficult and emotional as it nevertheless is.
Posted by: Ryan at January 14, 2011 08:41 PMRyan, I am happy to babysit any time. Just shoot me an email and we can work out some times I can watch Aiden <3 Its time to feel ok to ask for help, if you havent already. Let us help you <3
Posted by: Danielle Teal at January 17, 2011 12:24 PM
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