i was able to go back and see jonah before i headed home this afternoon. i've got 3 hours to drive back to greenville and the weather is nasty, so it might take longer. finally being able to see him feels like a wonderful conclusion to my time here, though we've still got a long ways to go.
patrice just updated her blog before we went back that gives us the latest information about jonah. the quick version--he definitely has epidermolysis bullosa, but now it's just a matter of what type it is. we won't find that out until the 2nd biopsy comes back in a week or so, and even then, it will take observation to determine the severity of the type.
we have made some fabulous connections with other blogs and the facebook group. we just ask that everyone continue praying for this precious boy and share love with the family. PRAY WITHOUT CEASING. there are so many amazing things God can do, and we just ask that His hands work throughout this whole situation.
so now...just a few pictures to show how our little "mummy man" is doing back in NICU. the burn unit recommended the gauze, which is helpful in keeping the raw areas moist and safe from infection.
we opened the door to see if he'd respond to her voice and wake up. i wish we could have gotten some open-eye photos, but that'll have to come another day.
patrice peering in at him.
a shot from the back of the incubator. a full shot from the side of the incubator. he's receiving antibiotics, a sugar water drip and pain meds through an umbilical tube in his belly button.
alright, i'm getting on the road. thank you so much for the support you've shown this family so far and please continue to pray for jonah as we await the results of the biopsy and continue to monitor his progress in the NICU.
5 hours ago
My family is praying for this sweet little baby and his family. God Bless you all connected to him
ReplyDeleteLauren,
ReplyDeleteI posted this on Patrice's blog as well, but i was born with EB as where 2 of my kids. www.garrettshouse.org I have created a new parents guide foe parents and family members of EB babies. you can also email me at saradenslaw@gmail.com and I can email you a copy. There is so much support out there for EH families, you are not alone! I hope to hear from you soon.
Sara
Just wanted to thank you for the support you have been (and are) to this precious family, during both the highs and the lows. May God bless you all and especially Jonah!!
ReplyDeleteJennifer from Bolivia, South America
Lauren:
ReplyDeleteThank you for posting pics of sweet Jonah! My name is Aimee and I had been talking to Patrice in recent months about keeping baby boy after he was born. I have been in a constant prayer for Patrice, Matt & Jonah upon hearing of his condition. I wanted to make sure it is ok with you if I use the pics you are posting in making a scrapbook for them. I currently have 6 pages with pics and scriptures and it is just a small token that I can offer during this time for them.
If you wish to you can contact me via email or facebook - email: pencylala@yahoo.com and my name is Aimee Pence.
Thank you and God bless you!
I have not stopped praying!!! Please be safe on your journey home and take care of yourself. I know this has been a roller coaster for you also. Everyones world has changed in an instant and Jonah has touched all our hearts!!! I will continue my prayer quest for the entire family.
ReplyDeleteMarie Wimsett
Praying for little Jonah and all who are touched by this difficult situation...
ReplyDelete