Friday, June 27, 2014

Not Getting Easier

I felt incredibly frustrated today. Micah's sats regularly fluctuate between the 60s and the low 90s. The fluctuation has been totally stumping the doctors. Today his sats have been in the 50s and 60s. His worsening state is causing the doctors to: turn UP the oxygen and positive pressure on his breathing vent, give him new medication (atrovent) for what they THINK is bronchomalacia (weak and flaccid bronchial tubes), and give him what seems like the 100th red blood cell transfusion to help carry more oxygen in his blood.

For over a week now the doctors and nurses have been attempting to take Micah off his breathing tube. Everyday seems like the same thing, "His sats look great! Let's wean the vent" and "His sats are in the 60s, let's increase oxygen", "his levels are great again! Let's wean the vent" and "hm, his levels are troubling, we might need to get an ENT specialist to do a scope of his bronchial tubes"... 

Now it's been about two days since they've tried turning off his vent to see if he can breath sufficiently on his own. I feel like we're going backwards. I feel like we're always going to be stuck at the hospital battling complications caused by something unknown.

Over the last week I've been feeling insanely jealous and heartsick when I see pictures of my friends with their healthy newborns. Their babies look perfect and beautiful. When I look at Micah, he is perfect and beautiful and I find I have to actively remind myself that he's sick and needs his team of medical professionals. It's still so unbelievable to me. Even with this reminder, everyday Ray and I say to each other, "I can't wait until we can bring Micah home." 

I'd give anything to have him wake me several times through the night to eat, to change his diapers, give him a bath, dress him in baby clothes, smell his sweet baby skin whenever I want, hold him... Not only and I missing out on this time in his life, but he is missing out. This point in my life doesn't seem real.

I just need to work on being more prayerful, more thankful, and more patient...

I love you, Micah.