The beauty of our child

We again spent the day with Maddy in the NICU. She is getting stronger and drank on average 50cc per feeding which is great. But Amber and I are beginning to realize that she is not coming home right away and while she is heading in the right direction she still has a long ways to go. The more we learn about Madison's issues the more we see that the cleft pallet is the lesser of her problems and that the Pierre Robin Sequence (PRS) is what she will have the most challenges with. PRS is what is causing her issues with breathing and is what is stopping her from eating easily. With PRS the tongue is shorter and sits back which make latching on to a nipple of a bottle extremely difficult, also because it sits back and the jaw is set back it make it very easy to have to tongue block the air way. Nothing is more stressful than watching your 6 day old baby begin to turn gray as you are feeding her just because she is positioned a little off. So doing things like driving her home become tricky to think about because she will need constant supervision at least for a few months to come. But we are learning how to work with her as she learns how to work through her own challenges. It is amazing to see the pure will of Maddy as she learns and develops and figures out how to make it work.
We also spoke with the NICU coordinator today to check on how our insurance will be covering Madison's stay in the NICU, as well as the medical equipment we will be needing, the home health visits once we are out of the hospital, and her upcoming Doctor visits & surgeries. The coordinator told us that we have the best plan she has seen in 5 years or so and outside of a few co-pays at the Doctors visits everything will be covered at 100%!! Which is awesome especially because we have no deductible either. It just makes me love IKEA even more.
I am so lucky to have such an amazing wife who has been brave through this and you can see the bond between a mother and her daughter, I love her so much. We have also been so blessed to have each other to lean on and to have Kennedy's smiling face to come home to each night. We also have such wonderful parents who are always willing to drop everything to help us with Kennedy, dinner, or giving us what ever support we need, we love them all very much.