The hospital continues to let us "hotel" here for $30/night. What a deal! Tonight will be our 9th sleepover here. I am trying to work this week; Sarah is obviously still at the hospital. Anyway, we have made it another day seizure-free (which is always the biggest victory to be won each day)! Yesterday they started weaning him off of his IV fluids, and now he is completely off them. But he wasn't eating enough on his own, so now he has an "NG" feeding tube through his nose and down his throat (the "SNS" tube that he was feeding on earlier only went from the syringe to his mouth). Sometimes it is hard to gauge how much progress is made by these changes. To me, switching the IV for a feeding tube feels kind of like a wash. Obviously when we look back, it is not hard to see that he has taken many steps in the right direction. 
His heart no longer has an arhythmic heartbeat or a murmur -- all of the pulmonary hypertension is no longer a conern. His spinal tap test and other lab tests have all come back negative. By and large, he is a very healthy little kid. The great question of last week was, Is he going to be okay? The answer to that question has proven to be a resounding YES!, for which we will be eternally grateful. This week's question is almost as worrisome as last week's and just as urgent: How in the world are we going to do this whole parenthood thing, anyway? Luckily, it looks like we are going to get to find out.
7 comments:
Sarah and Ted and now little Drew! Steph has passed along information that CL has received! We are praying for you from Michigan and hope you get to go home soon, I bet it is different being on the patient side of things, Sarah, and I hope that you have the strength you need! He is such a beautiful boy, isn't it amazing the instant love you feel for your baby? It's such a miracle. Love and miss you and hope for the best!
oh what a cutie patutie! he is looking great.We love you guys.
Thank you so much for your updates. I look forward to each one. Love to you Drew, Sarah and Ted. Heidi
Things sound much better today and we are very grateful for that and happy for you all. What a cute little guy! Ava, Tiff and I are very excited to see Drew. We hope to see you soon.
Love,
The Magalei's
Ted and Sarah! You will be wonderful parents! I can't think of anybody better to bring up such a special guy with much love and laughter!! SO happy that all is on the upswing!!
ReNee
I'm glad things are improving. We wish we could be closer to see him (and you). He is a darling baby.
He is so beautiful and we are so happy that he is doing better. Sarah, please call if you guys need anything. As you know, I know the waiting game alone is no fun so if Ted is at work and you want someone to come and sit with you I would love to. Morgan says Drew looks just like his dad.
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