Medical Dad's are often unmentioned, underrepresented, and underappreciated. But today, I want to share some of the kick a#$ things you do to take care of our medically complex girl.Read More
It's hard to believe that we're wrapping up day 19 of this hospital stay. 3 weeks on Sunday. 128 days in the hospital since September 16th. And yesterday, Addie turned 6 months old. Out of the ~180 days she's been alive, most of it has been spent in the confines of a medical institution. Crazy when you think about it long enough. Last night, before bed, Steph and I flipped through, backwards, all of the photos we've posted to her Facebook page and to see how far she's come is really incredible. From the tiny, 1.5 lb, red-skinned human struggling to breathe in the isolette, to the 8 lb, fair-skinned, smiling little peanut. The transformation is something that you start forget. Our focus is always on the now because that's where we have to be. We have to live in the moment. We have to fight with the doctors for what we know is right. We have to give this little one constant attention. We have to be by her side without ceasing. We cry, we worry, we set our timers for the next regimen of meds. We wait for the next diagnosis, the next procedure, the next treatment. And that means that while we see her grow, we rarely have an opportunity to sit back and watch it.Read More
We're at a point where we're also realizing that things may not be sunshine and roses when she comes home. That the ride we're on may not be over. That preemies like her still require much more than the giants down the hall. When we've asked the doctors about coming home for Christmas, they've given us the caveat that it's likely that she'll go home with oxygen support. And that tomorrow, at the end of her 35th week, if she's still on oxygen, she'll be officially diagnosed with chronic lung disease.Read More
They told us this would be a roller coaster. Which worries me sometimes. I get what they mean, that it has its ups and downs. Twists and turns. Sometimes it flips you upside down. Sometimes, you're racing around a curve. Other times, you're being slowly pulled up a hill. I think that last part is what worries me. Ups and downs. On a roller coaster, the ups are always followed by a swift down. An intense drop. You never go up, up, up and stay there. The anticipation you feel when the track catches your car and you start chugging up the hill. Shaking as you go. That jerking motion of the wheels caught in the biggest bike chain you've ever seen. Ca-chunk is probably the only way to describe the sound you hear, every few seconds as you slowly approach the top of the hill. You know what's next. You know that once you hit the top, you'll feel the wheels release. Down you go. Speeding towards the bottom. Your stomach getting shot into your throat. And if you're lucky enough to be on an old wooden coaster, the white knuckle intensity of hoping that single bar, 3 inches off your lap will hold.Read More
John wrote about our experiences while Addie Belle was in the NICU on a private group for our family and friends. Here is a snippet of his writing... Diary of a NICU Dad.
Addie has inherited that stubbornness and I know that's what will get her through her stay in the NICU and keep her healthy on the other side of all of this. She won't slow down. She won't let up. As I've watched her fight, grow, and progress over the last 3 weeks, I have a feeling in the pit of my stomach, a voice telling me in the back of my brain, that she's going to be OK. And not just OK. She's going to be special. Not just because she's my daughter. Not just because she's a miracle. Just because.