Thursday, April 12, 2012

Plateaus and Perspective

It's been a long day, neither of us really slept last night. We had reserved a sleep room but after the gagging incident last night we didn't feel comfortable leaving him alone. We are both starting to get burnt out and miss our little girl. Michael has kind of plateaued in the last 3 days, he is still doing awesome but he is not eating as much as the doctors would like and his lungs are still wet.  We are not in a hurry to leave, but we are excited every time he progresses to the next level of recovery. So when the progress is not moving forward, it feels like we are moving backwards. It seems like we are in a bad situation, but I have to help myself realize how blessed we are.
This is hard for us, that is for sure, but when you see a little three year old walking down the hall all stitched up pushing her little cart of IVs, it does help put things into perspective.  There are so many amazing families here, each one of them has a unique situation with their child's heart. Michael seems to be improving at an amazing rate compared to most of the other children here. His condition is not the worst, but it could be very scary in the future. The doctors are very impressed with how he is tolerating everything. Some of his numbers could be better, but he is doing awesome and his low stats don't seem to be bothering him.  We are both very glad he is so strong and healing so quickly. We are also happy he is still an infant and will have no memory of this. I dread the day I have to explain that we will be going back to the hospital for the doctors to work on his scar. It's so hard to watch these little pre-schoolers walk down the hall pushing their IVs. They are so adorable, and  are such amazing little kids. It really opens your heart when you see them, their parents must be so proud of them.
We are so lucky to live so close to such a great facility. Our cardiologist is one of the best in the nation, and our surgeons were amazing. Some these families are from Montana, New Mexico, Utah, Wyoming, and Nebraska. They are from all over the country, they have no family to help them, and some of their spouses have to fly back and forth on the weekends. Some of them have been flown here by flight for life for emergency surgery. 
I am not trying to downplay our situation, but trying to help myself realize how lucky we are. Michael was born with several scary heart conditions; a narrow and pinched aortic arch, a small and deformed aortic valve, a deformed mitral valve, and a hole connecting the top chambers. Luckily two of these have already been fixed and he may be able to live with the other two for quite a while.  His condition is much better than some, and much worse than others. 
This entry was more for me, and less of an update on Michael.  I have had a long emotional day and have been fairly gumpy and depressed. I have lost site of how lucky we are to have such a beautiful little boy sitting here in our arms. He is able to look around, he has all his fingers and toes, he can hear, and he is the cutest little guy in here.  Since we started this blog, I have had multiple entries every day, it has been very therapeutic for me and helped me get most of the thoughts out of my head and out into the world. 

This is a hard situation to be in and nothing can prepare you for it, but keeping an optimistic outlook and trying learn everything you can helps a lot.  I lost site of that last night and today and it started sucking me down a dark rabbit hole. After seeing my wonderful little girl and talking to my family, I felt much better.  Thank you for all of your prayers and kind words, we love you all.