No more seizures (yet)! The phenolbarb seems to be doing its job just fine -- although it does knock him out pretty hard. All afternoon yesterday and into the night, we were frustrated because it felt like we had made zero progress. He was too tired to eat, and thus no closer to leaving. That all changed early this morning, when for some reason, everything just seemed to click and he had some very successful feedings. I think a lot of it had to do with Drew's consult was the speech pathologist (who really was a physical therapist) last night. She confirmed that he is not very good at sucking, and I wholeheartedly agree! (Sarah is going to roll her eyes at my attempt to be funny.) But the main thing she did was to tell us that we should stop the "SNS," or tube feeding, that we had been doing to try to get him some extra nourishment. That advice has seemed to work wonders.There is more good news: the doctor is going to reduce the dosage of phenolbarb, so hopefully he won't be knocked out too much to eat today. Obviously there is a fine line between controlling the seizures and getting proper noursihment. Also, doc has discontinued the phototherapy, so no more annoying lights. And finally, they are reducing the amount of the IV fluids that Drew has been getting, in the first attempt to wean him so he can come home.
After a long day of no progress, this morning feels like we have maybe turned a corner.
17 comments:
Sounds like things are getting better! Yeah! Hope you guys are hanging in there! We are praying for you all! He is so cute! We love the blog!
Amy and Family
So good to hear. We've been praying for you guys. We love you!
Ted and Sarah-
First of all, congrats on the new arrival! We are so excited for the two of you! I'm sorry to hear the bumpy road that Drew has taken, but I'm happy that it is looking optimistic! Please let us know if we can do anything for the two of you. We will keep you in our prayers.
Love,
Dave and LIndsay Cutler
Boy, oh boy do we love the blog idea or what?! Now poor Steph won't have to put up with us bugging her everyday for an update on you guys. :) Sounds like each day has its ups and downs...sheesh! It appears that you two are handling things well and we are glad. PLEASE let us know if there is anything you need, okay?
Little Drew sure is a handsome fella - Tyler says that you can tell from his "pictures in the buff" that he has his daddy's sweet biceps.
We love you guys!
Kristin, Tyler & Eli
We're thinking of you often and keeping you all in our prayers. Especially Ted, since probably needs the most help. Just kidding!! Love all three of you!
Cara
Sarah & Ted,
Congrats! He is very very cute! Can we bring you a bite to eat? We'll even bring a pie...your choice!
Love,
The Magalei's
Ted and Sarah: You and Drew continue to be in my thoughts and prayers. I agree Drew looks buff! I want to bring you dinner soon! Love now and always, Heidi
Congratulations! Sounds like a tough little guy; and handsome too. We'll keep you in our thoughts and prayers. Let us know when you are coming home.
Spencer and Brittney
You are in our prayers! Although we don't know exactly what you're going through, we understand the feelings exactly!! We hope all keeps going uphill from here.
Keep up the good work guys. We'll keep cheering you on. That is one cute baby. Once he's home and things settle down, we'd love to come see you guys. Until then, we'll keep updated through your blog.
We're happy to hear about Drew's great progress- how exciting! Jared & I are praying continually that Drew will receive the strength that he needs and so will the two of you. Still can't get over what a cute family you make! Please let us know if there is anything we can do....
Love always, Jared and Reini
Drew is an amazing baby! He is just so beautiful! I am glad that Drew has turned a corner for the better. The pictures are great, thanks for sharing the beginning of your families life together with us. Take care and I pray that your family will be able to get home soon!
Mike
HI,
This is Shan's sister Jamie. My heart truly goes out to you as my first son spent his first 6 weeks in the NICU at Primary's. It's a rough road but through it all I learned to follow my instincts. You are his mommy and daddy and will be lead and guided to be able to fulfill his needs and help him be well. We are praying for your little family!
Oh my goodness he is soooooooo cute!!! Thanks for the updates and I am glad to here you guys had a good morning. We are all thinking of you.
Kym
Sarah and Ted
Drew is so cute! I do hope things continue to improve and you can come home really soon. It is so fun to see his pictures and progress! I will keep praying for you all.
Lots of Love
Laura Petty
Well it's great to know that Drew seems to be improving! He is so dang cute, and I can't wait to see him again- only next time I hope to be able to hold the little fella! You're in our prayers-
Steph (and Neil)
Sarah- I'm so sorry that you guys are having such a rough start, I definitely understand what you're going through. Our prayers are with you and your family and hope that you'll get to take him home soon. all our love...the teuschers
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