Today’s plan is to try to wean the NO and increase her feedings.(slowly! on both)
They have decided that this was not a pulmonary hypertensive crisis, but probably some bug. Amazing that a bug that didn’t even show up on the radar with anyone else that has been around her, almost killed my baby. Poor sweet girl.
The doctor says she needs 7-10 days to recover from whatever it was before her surgery. Our fellow is about to pass his boards for anesthesiology (he has been wonderful with Bella’s current state) says that an anesthesiologist wouldn’t do surgery on her till she was weaned from the NO – hence that directive. So the plan is to try and schedule the fundo, g-tube, and trach next Tuesday or Wednesday if possible. That gives her time to recover and get some reserve built up.
My major goal on Sunday (Jason was here and I was at home) was to find someone to watch my other children. My sister-in-law has been watching the girls. We are so grateful, but this has been ongoing for a very long time. Since we aren’t going home any time soon, we needed to find something fairly permanent. I approached two ladies. Let’s be honest, I was begging. I came home so sad. I knelt and prayed. There has to be someone Father. There has to be someone. I called my Mom and we talked (again) about every different situation we could come up with. And then Mama had a thought. There is a girl home from college – doesn’t have to go back till the end of August. She called her. Then she called me. The miracle is that she was praying for a nanny position for the summer. A double blessing – 2 prayers answered. So long story short – she will be living at our house Sunday night through Friday afternoon. She will watch over and love on my children. There will always be someone there. Now if I need to go in early or late if doesn’t matter. She can stay with us till the end of August, so when we go home and we are trying to get used to living with our new medical reality of a living room turned into a hospital room, I will have help. Did I mention that she has experience with DS and already knows my Joy? We are truly blessed beyond measure. He is mindful of us!
This is Joyce. Divine intervention is glorious!! What a truly wonderful connection. I'm sure she will be a tremendous help for your family yet it will also be a life changing experience for her.
Oh dear Bella. You are truly making a mark on this world in a huge way. We are praying that each set of orders from the doctors is inching you closer to coming home.
Ditto with Joyce. Divine intervention is such a blessing in life. What would we do without His love for us? I am so glad you guys found a nanny for your kids, so you can be with Bella as much as needed. What a great family you are and what a sweet daughter....Bella, get better sweet girl, fight hard and know so many people love you!
Oh Shelly! I've been so worried about who can be with your girls. We really do have a loving Heavenly Father who is in the details of our lives. What a blessing... Now you can focus on Bella and listening and learning all that you need to know to raise your precious youngest daughter. Are they going to keep her in the ICU untill her surgery?
I am so glad that you were able to find someone! What an incredible blessing this will be for the girls and you and Jason. I am so grateful for a loving Heavenly Father.
I am so glad that you have a more permanent solution. I am grateful for my time with the girls, and the blessing of getting to know them so much better. They are wonderful children, and you are blessed with a great family! Thanks for letting me help out as long as you did! We keep praying for little miss Bella too! Love you guys!
oh how exciting!!! (about the nanny opportunity) The Lord works in amazing ways!
That is a true blessing! What a relief for your whole family!
I'm so glad you shared how you found your nanny. I love stories like that. That one brought tears to my eyes. What a huge blessing. Love and prayers are sent your way!
In the midst of our worry,God seems to always come through.I know for me,as long as I have known the others were cared for and being loved on,I could truly focus on just Zoey.We have had 2 years of this juggling between home and the hospital and just when I wonder how it is we will keep up the pace one more minute ... it all comes together.For you it will also,I promise.Super steps in the right direction darling Bella.Slow and steady you go.
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