Dr. Irwin, the pediatric neonatologist (a big word for sick baby dr), came to see our Sophia today. He talked with Sarah and Joey about putting her on seizure and pain meds, as it appears she is exhibiting seizure activity off and on.
She just drank a good bit of formula, but is very sleepy and not very interested in waking very often to eat.
Emma & Shawn were up to see their sweet baby sister and both were very anxious to hold her and feed her. Emma is feeding off of all of our anxieties and is in meltdown mode.
Sarah is doing better today (physically), but is still quite sore. She has a ton of adhesions and scar tissue from previous c-sections and that prevented Dr. Williams from tying her tubes.
Emotionally we are all exhausted. We were elated yesterday and had high hopes for either a misdiagnosis or milder form of the disorder given her very loud entrance into the world and very different presentation than JoJo. But the 'screams hear 'round the world' have turned to deafening silence.
Keep us in your prayers. We need all the good mojo we can get.
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Praying for all. Thank you for keeping us updated. Everyone is thinking of you all.
ReplyDeleteTiffany Sande
I will continue to pray. Your kindness in keeping us updated has meant more than you can ever know. Please give Sophia Grace a hug and kiss from one of her Grammie's greatest admiers. Sophia is so blessed to have you and Sarah in her life. Continue to give her lots of love. She will continue to be in my prayers as well as the whole prayer team at Chapel Hill.
ReplyDeleteAll of my good mojo is going towards Sophia Grace.
First of all, you all are in our prayers!
ReplyDeleteSophia Grace is so incredibly beautiful and is so loved!
Thank you for keeping us updated as you try to digest yourself, all that is going on.
Please let Sarah & Joe know that we are thinking and praying for them.
~Mary, John, Katie & Maggie Fitzpatrick
Prayer For All ~ Lord, I choose to trust that no matter what, You will wipe away all our tears one day, and we will suffer no longer.
ReplyDelete(Revelation 21:4)
Continuing to send prayers, love & mojo.
I'm glad we ran into eachother today. Sarah is so lucky to have you 2 ladies with her. Thanks for keeping the extended family up to date with this blog, it's great. I love the picture's and video's. Kyley and Kenzie said that their new baby cousin is SO CUTE and she looks like a dolly because she's so tiny ;)
ReplyDeleteLove you all, sending good mojo your way.
~Tasha~
Thank you so much for the updates, pictures and great videos. Please send my love to Sarah. My prayers are many my hopes are more. Sophia Grace is beautiful.
ReplyDeleteWe are praying for you all. There is power in prayer, and you have ALOT of those from many people. Give Sarah & Joe love from ALL OF US!
ReplyDelete<3 Miranda
I continue to pray for sweet Sophia and your family. Our first baby, Hunter, had NKH and passed at 20 days old. When we had Olivia, though she was NKH affected, she was much different than her brother. She cried loudly when she was born and then on day 2 became very sleepy and ate less. She is now 5 1/2 years old and severely affected but such a blessing to our lives. Just wanted to say, hold on to that hope! God Bless,
ReplyDeleteAngie Carter www.caringbridge.org/visit/oliviacarter
While I don't know you personally I feel deeply about what all of you are going thru at this time. God only gives us what we can handle and I pray this time will be a gift for each one of you to hold in the days to come. What a beautiful girl who is blessed to have such a wonderful family. I pray for all of you each day and know God will take care of your angel.
ReplyDeleteBe content with what you have, for God has said, "Never
ReplyDeletewill I leave you; never will I forsake you." So say with
confidence, "The Lord is my helper; I will not be afraid."
- Hebrews 13:5,6
*Kim Jackson*
I check your blog everyday and send my prayers and best mojo possible each and every minute! you have an incredible family! she is so beautiful and precious.
ReplyDelete~Robin