She's Home!

She's home.

- One day shy of four months.
- Four surgeries later.
- Countless trips and/or phone calls to the NICU
- Hours/Days/Weeks of worrying

And you know what-- the last 3 hours have been so great that I'd say its all been worth it. Before I go into the medical details that we're facing and all of the other things swirling through my head, let me get one thing out:


THANK YOU!


That first thank you is to all of the medical professionals that have selflessly helped our daughter survive these first four months and have positioned her to do so well. We've been floored-- absolutely floored-- by the medical care that Madeleine has received. The nurses, nurse practitioners, physician assistants, physicians, respiratory therapists, surgeons-- in short all of the medical personnel have been absolutel amazing and our gratitude simply can't be expressed.


Here's a second one: THANK YOU


That ones for all of the friends, family members, and the ridiculous support network of folks that have called, written, donated, cooked, prayed, and done god knows what else in support of Kirsten and I. Months ago, after we were once again shocked by someone's kindness, Kirsten turned to me and said "How do we know such good people? I don't think we're half this nice." She said it jokingly but the sentiment rang true: we've been constantly humbled by everyone's outpouring of support and we simply don't know what to say other than, thank you.


Okay, with that out of the way, I'll get to the part of the blog that frequent readers have come to knw all too well-- the medical updates. First off, the best piece of news is that Madeleine looks like a normal baby. That may sound weird but after all of the surgeries, wires, and breathing support that Madeleine has been through, its strange for Kirsten and I to think of her as a baby first, not a medical patient. That being said, she's a baby with a few medical issues that we hope to resolve in the coming months. Here's the list:


- Breathing: Madeleine is receiving a small amount of oxygen support-- about 1/2 liter of 100% oxygen. We're not sure how long she'll need the support but we have a meeting with a pulmonologist on July 17th where we'll assess her continued need for breathing assistance. When we're home, Madeleine breathes with the support of a condenser that pulls oxygen from the air. When we want to leave the house, we have oxygen tanks that we can take with us.



- Feeding: During the daytime, Madeleine is taking most of her food via bottle with some exceptions. At nighttime, Madeleine doesn't usually wake up so we use the feeding tube to ensure that she gets enough food to continue growing. We're not sure how long we'll continue with this arrangement but we'll work with our pediatrician to determine a feeding plan. We hope that within a month, we'll be able to feed Madeleine when she wants to feed-- rather than on the militaristic feeding of every three hours. Ideally, she'll get to the point where she eats enough during the day where we won't need to wake her up at night with supplemental feeds.


- Future surgery: We'll meet monthly with a GI surgeon and will track Madeleine's weight gain. Our goal is to get Madeleine to 5 kgs (12 lbs) before the surgery. We've been told this may take up to 5 months to happen.


- Medicines: Madeleine is still taking a diuretic once daily to help with fluid issues related to her heart/lungs. She's also taking two nebulizers to help her breathing and one medicine to limit problems with reflux.


Taken together, Madeleine still faces a number of medical challenges but we think the worst is behind us and we're hoping that we're able to resolve most of the issues in the next few months. That's pretty much all we have to update right now. I'll get some pictures up in the next few days-- we've been really negligent about posting. In the meantime, just trust me that my daughter looks great-- the nurses loved the polka dot dress that we chose to bring her home in-- and know that Kirsten and I are absolutely ecstatic about the opportunity to have our daughter home.

Thanks again,

Brent and Kirsten