Did I ever mention I hate rollercoasters?

I do, my husband went to Cedar Point with me once, and refuses to let me come again. I think the last straw for him was when I waited in line for an hour for the Mantis and then walked right through and said I would see him and our friends when they were done! Rollercoasters scare me, they make me uncomfortable, they worry me and they make me sad. I don't like to go on them and if I do, I can't wait to get off. So I avoid them.
CDH is not a rollercoaster I can avoid or get off of. Neither can Grace.
I remember early on, hearing about when she would eventually go through withdrawls and I remember watching this baby on ECMO, who if at times you even moved her, came close to dying and thinking "how hard could it be, if you are at the point where you don't need to be sedated?, how can anything be worse than this?" Well now I've found out. Withdrawls suck. Big time.
Some babies only take a few days to wean, because they are on such little sedation and they too will withdrawl. Grace at one point was on "enough sedation to kill a horse" as one of her primaries says. So her process is long, alot of withdrawling and alot of hard days.
Grace was doing pretty well with the wean for the first few days. Until she got to this past Monday. She had then had enough. All day Monday she was very inconsolable, very fussy, had alot of gas, sneezing and yawning. She was very obviously uncomfortable in her own skin. I spent 14 hours at the hospital because I could not leave her. Once she was able to calm down she was ok being held for a bit, but if you even moved she would start up again. She was getting so worked up and upset that she would desat into the 50's at times. Not good. Tuesday the surgeons gave her a weaning break and she had a better day, still sneezing and yawning and a little fussy butn ot like Monday.
Yesterday, I thought she would be ok. She had an alright night and morning and even afternoon, nothing terrible but then around 6 pm she just started up again. Get her settled and calm and then try to put her down because you needed to eat, use the bathroom or pump and she flipped out. I didn't pump for 8 hours yesterday because I just could not put her down or leave her. I left the hospital around midnight, because she had finally settled.
I called around 7 am and her nurse said she woke up around 2 and had been up on and off mostly on since then. And that as soon as you put her down, she was upset again so her and the tech had taken turns holding her all night. This is going to be a rough month of weaning. Or longer.
Please pray for sweet Grace to have an easier time weaning.
They have started fortifying my breastmilk for her, to give her higher calories in less volume. The idea is to give her as much "umph" as they can, without giving her so much volume that her body would need to get rid of. Give her body the chance and energy to work on breathing rather than getting rid of fluid. So they add 12 cc of concentrated Enfamil to 100 cc of breastmilk. Which allows them to give 34cc an hour rather than 37.
She is working on physical therapy and occupational therapy.
Neuro wants to just follow her after she goes home in their developmental clinic.
I am so so thankful for this sweet miracle that we have been given. As hard of a time as we are both having with her weaning, I am so glad we are at that point. She still has so many hurdles to climb. I heard this on the radio the other day "how do you eat an elephant?" One bite at a time. So how do you beat CDH? One step at a time.