Look at this beautiful boy.
Today they took his cannula (that's the oxygen in the nose thingy) off of him. Really he took it off himself, pulling it down and breathing perfectly well all on his own. This is a big change for a boy - and his parents - who we thought might never breathe on his own.
Every time I write, speak or think a sentence like that I follow it with "praised by Jesus Christ." Seriously.
His breathing is kinda shallow and funky, though, which is one part newborn + one part trauma. God has answered our prayers time and time again, let's keep asking that the breathing gets better. :)
Other promising news: He's been doing a great job with oral therapy and is a great sucker! Yay! Also, he is doing really well with his feeding schedule and digesting my milk. Yay! And his gag reflex is getting stronger and more consistent! They are even going to introduce a bottle to see how he does with it. And very soon (like tomorrow maybe) we will get to start doing non-nutritive sucking after I pump. His eyes are responsive, too, and all this combined means his brain stem is probably in good shape. Yay! Yay! Yay! Please pray for continued success in feedings.
His muscle tone, though, is still not in good shape and it's looking like a possibility for cerebral palsy. Please pray for normal muscle tone.
I don't know if I told you this already, but the hospital found the blood cultures taken in the ED. They came back negative. We also have the results from pathology on the placenta: everything was normal and healthy. We still don't know why James' heart stopped beating.
And now, the results from the MRI. There were signs of "subtle changes caused by probably low blood flow and oxygen supply to the brain." Our doctor was expecting worse results and was pretty pleased with these. We will have to wait for James' brain to develop to know how those "subtle changes" will affect his life. Or we will just have to pray them away. The human brain is an amazing thing and it is within God's power to heal these changes or have the brain compensate for them. If it be God's will...
So to reiterate:
Please pray for
- normal muscle tone
- normal breathing
- continued success in feedings (this includes good gag, sucking, tolerance of breast milk)
- healing of James' brain
Praying here! What an adorable little guy! Thank you for keeping us posted!ReplyDelete
Wow, more wonderful news! God is so good! We will keep praying for James and the new intentions. And yes, he is a beautiful baby boy. : )ReplyDelete
Bonnie! I am so excited to hear all those great strides. Praise God! Thank you, also, for the info so we can pray more specifically. I will keep praying! He is such a beautiful boy - how great to see a pic of him "unplugged". Love you all!ReplyDelete
YAY YAY YAY YAY!!!!!! PRAISE BE!!! We miracle babies are tough.ReplyDelete
Thank you so much for this update! This definitely sounds like really promising news. Many more prayers coming your way!!ReplyDelete
So glad to hear the positive changes. They are each answers to prayer. I have others praying for James and will continue to pray myself as well.ReplyDelete
We here at the ISU Newman Center are praying for James and so happy to hear that he is continuously doing better! We have included him in our prayers of the faithful for both masses this Sunday and will continue to pray for his full recovery!
Oh Bonnie, Praise God!!ReplyDelete
Are they letting you do some KMC (Kangaroo Mother Care) ?
He is beautiful. So glad to hear the new!
ROCK ON JESUS!!!!!!!!! Yay! So happy to hear this wonderful news! Praying as always,ReplyDelete
wondering if the hospital is encouraging skin to skin contact with baby. if mom and baby get as much bare skin to skin contact as possible, studies show that it has a huge positive impact on neurological development of the infant. this benefits breathing regulation, and may even help other neuro aspects. push for this if you can. it is often called "kangaroo care".ReplyDelete
still praying for all of you-
Thanks for asking about the Kangaroo Care.ReplyDelete
I haven't been able to do it yet because James still has an iv that goes into his groin. We've been told that it's fairly delicate and so they want to wait until James is off the iv to do the KC.
I've been doing as much skin to skin that I can sneak in, though, and I'll ask the doctor about KC again today. We'll see what she says!
Bonnie, I wonder if you would be able to do a modified kangaroo care. Like, move him over to the side of the warmer, put the side down and stand next to him so that you're chest to his side. You might also be able to get clearance to put him in a sling and just wear him the whole time once that IV is gone.ReplyDelete
When my daughter was in NICU 4 months ago (also a home birth transfer), she also responded very very well to me leaving nursing pads in her crib with her, tucking them into her blankets even. Anything that lets them rest more deeply is good.
Please know how much you're in my prayers. Much love and prayers from Upstate NY from this home birth NICU mom!