I had my last St. Louis appointments today, the ultrasound
looked good, Anya is about 5lb 13 oz, and her head is down! Still no extra
fluid! The ultrasound OB even commented that her lung to head ratio was better
than it had been before. The lung to head ratio is how they check severity, the
standard practice is to use the number they find at the 24 week ultrasound to
discuss prognosis, for whatever reason they do not take later lung to head
ratios into account. Basically he brought it up to say ‘This doesn’t change
anything but at least it does not look worse.” Sorry for the clinical lesson!
My primary OB is very confident that I will not go into
labor before I can get down to Florida. The past couple of days I had been
worrying about every pain, but I am not dilated at all, so the risk is
low. When I had Arwen none of this
mattered, because I live less than two miles from St. Joseph. This time I have
to go on a fifteen hour car ride, not including the every two hour walking
breaks I need to take to keep my circulation going. My greatest fear has been
delivering at some unknown hospital on the way, hoping I could get to a
facility that would understand the basics of CDH care. I am pretty confident
this is not going to happen, but I will breathe easier when we get into the
Gainesville city limits!
Three weeks or so from today I will not be pregnant anymore.
This is bittersweet, everyone I know who has been through this says to enjoy
the pregnancy as much as you can. I have tried to do this, but it has been
really hard. I am not patient; I always want to be looking ahead to the next
big thing with normal situations. I just want to see what happens next; and to
find out what my life is going to look like. It has been four months since I
could feel confident in what the future holds.
If I have learned anything from this pregnancy it is to chill
out. It reminds me of when Mom was sick, after she was diagnosed with lung
cancer, we came home one day to find a neighbor had put a rain gauge or some
such thing in her flowerbed. This was a big pet peeve of hers, and she would
get all irritated about it, going on a rant, but not doing anything. This day,
post cancer diagnosis, she walked over in her frail condition and pulled it out
of the bed, and leaned it up against their house. She looked at me and said
firmly “if they say anything, just blame it on the brain tumors!” Major
life-altering diagnoses pretty much give you permission to give many aspects of
normal life the finger. Worrying about what people think of you is the first
one to go!
There have been many times in the past few months when I
hear someone complain about some mundane issue, and the individual is really
stressing out about it. I do not have this problem now, and I imagine I will
not for a long time; hopefully I will take this ability to my grave. Anya is in
God’s hands, he has been leading us on the path he wanted us to follow with her care. In light of this it is absurd that I would obsess over traffic, how clean the house is, or if I will or will not get a bonus this year. I don’t sweat the small stuff. I am happy to have reached this place, I am more forgiving of myself than I have ever been. It is an odd thing to be peaceful. I keep wishing I will hold on to this when we are in the NICU, but I am not holding my breath.
God’s hands, he has been leading us on the path he wanted us to follow with her care. In light of this it is absurd that I would obsess over traffic, how clean the house is, or if I will or will not get a bonus this year. I don’t sweat the small stuff. I am happy to have reached this place, I am more forgiving of myself than I have ever been. It is an odd thing to be peaceful. I keep wishing I will hold on to this when we are in the NICU, but I am not holding my breath.
So now we are ready to go- Saturday morning we will start
driving, arrive in Gainesville on Sunday, my appointment will be on Monday June
11th in the morning. I will post when I know when the induction is
planned! From then I plan on updating the blog more often than I have so far,
my goal being daily. I won’t necessarily update Facebook, so check back often.
Thank you so much to everyone for your thoughts and prayers!
Kelly, I have been following your bloc for a bit now and just realized that you are in gainesville, fl. I live in Jacksonville. I have a dear friend who is down there right now with her 3yo CDH survivor, Camden. She is on FB and I know she would love to talk and be a great support - plus she is at U and F NOW! Her bane is Devon Mickler Roell. Look her up..... her and Camden would be a great support system for you both! Much love and many prayers being sent your way. XOXOXOXO, Mary Riker
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