Oh how I love you! You are more amazing than I could have imagined. Today I decided to write to you because we need a little help. We have had some major ups and downs over the last week. Our major struggle was with all of the extra fluid you had making you look like a giant baby which really doesn't help the lungs. After we started you on a medicine called Lasix you really peed up a storm! You have dropped your body weight by around 50% over the last 4 days! On top of that Dr. Iskersky who is your doctor this week said that your x-ray showed quite a bit of your lungs actually inflated with air! That is more than I could have ever asked for!!!! And most of your bowel seems to be located in its rightful place in your belly and not your chest. You even had a big poop!! Even this really helped to clear out some room in your chest for your lungs to expand. We still have a long way to go but a few things have gone our way. You are still on ECMO which hasn't been ideal and we would like to wean you off. We met today with the baby doctors and surgeons and have a plan over the next few days to try to wean the ECMO. It is doing a lot of work for you that your lungs should be doing like putting oxygen into the blood. This is where we need our family and friends to really think about you and pray for you to respond!! There is a medicine that we can deliver to your lungs called nitric oxide that will help your oxygenation by decreasing the blood pressure in the blood vessels going to your lungs. They are also doing an ultrasound of your heart again today. The main goal we have right now is to get you off ECMO. It will be very difficult but your mommy and daddy have a lot of hope!
We come and visit you several times a day and you like when we give you your passy and read you some books. Your Grammy May sent you some books with a main character named "Owen"! He has a fuzzy yellow blanket that he takes everywhere. The new thing you like to torture the nurses with is pulling on your tubes and leads. Please try not to be so stubborn in the NICU. Just save that all up for me when you get home.
Here are some recent photos of you! You are so loved little angel. Our family has so much love! Our 3 year anniversary is tomorrow on May 9 and all of our love is for you!
Love you little sweetheart!
-Mom
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