Hi Everybody,This week has been filled with ups and downs... it's hard saying bye to friends when you have no idea when you're actually leaving, only to see them again and have to say bye all over again!!
Monday we found out that Mia was going to be transferred to Stanford only to find out the following day that they denied her. Tuesday and Wednesday were spend trying to clear up the miscommunication and misunderstanding, but as of last night the social worker told us that she's 99% sure that they truly denied Mia. So we're back at square 1. Today is a new day, so we're going to contact other NICUs our insurance company will cover to see if they have a bed available and will be willing to bring Mia to their hospital.
We realize that if it's taking so much effort on everybody to make something happen, it isn't meant to be - and we only want to go where God wants us!
Yesterday, Mia had a rough morning. After a trach suction, her oxygen level dropped to the 30's again, so they had to bag her back up, then once they got her stable, her heart rate dropped to the 60's/70's and they had to do an emergency trach change on her. They believe they saw more seizure activity, so they gave her a dose of phenobarbitol, raised her vent settings a little bit, and she knocked out for a couple hours. She was riding the vent quite a bit yesterday, but there were also long stretches when she was breathing all on her own. Keep praying that God will heal her from these seizures!!!
The doctors analysed the continuous EKG they did on her and it's some sort of arrhythmia, but it's not one that's treated. Apparently it's not that much cause of worry. They think that maybe it's a central line that is tickling something causing the heart to have a different rhythm. I don't know if I got that exactly right, but it was something to that effect!!There are 5 other hospitals on the list that our insurance gave us that they'll cover, so hopefully Mia will be accepted into one of their NICUs. I'll see if the case manager at the hospital will be able to contact them today so we know what we're doing!
I'll attach some pictures of Mia (upright for the first time - exciting stuff!) and some of Mercedes and her best buddy, Noel Dulay! We had to go to the park at least one more time together. =)
Keep us in your prayers - especially for God's will to be done in the transfer, and also that Mia will be healed of these seizures!
Blessed,
Rachael
What darling pictures! It's comforting to know that "The steps of a righteous man are ordered of the Lord" and that he give you His amazing wisdom as you continue to ask for it. Praying that God will continue to show you the perfect place to transfer baby Mia to.
ReplyDeleteLove in Christ,
Suzi
Mia just gets more beautiful every day! I think she looks healthier too. We will pray for her seizures; that God would completely heal her from them. I'm sorry about the living in limbo when it comes to the transfer. Your attitude is the right one - God's will is the only thing that will be best for Mia. We really, really want you to come out here and so we've been praying its His will, but we're mostly praying that she changes all the plans by being able to go home!! :)
ReplyDeleteI love those pictures! We're praying for God's will, too! Keep trusting Him! None of this is catching Him by surprise, so just enjoy the journey! :)
ReplyDeleteI love you all! :)
Mom and Nana :)
Oh my gosh the kids are so beautiful. I can't believe how big Mercedes is getting. And Mia just gets cuter and cuter ever day =D. I Hope and Pray that everything works out. I know things will but in Gods time.
ReplyDeleteI love the pics of Mercedes and Noel! =) I know he'll miss her once you're gone. Praying the Lord will open the doors that are meant to be open, and it will be a clear path that you are to follow. I know the fingerprint of God is on Mia--she is His masterpiece! I can't imagine everything you are going through, but I do want to thank you for being so faithful to Him through all this. Your faithfulness is a blessing to me!
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