The hospital called yesterday morning and said they'd be able to discharge Baby Dee -if I could come in for one more feeding to learn how to do her regular and NG tube feedings. When I arrived she was downstairs in neurology having a sleep study (kinda like an EEG). Oh My Goodness!!! - she was hooked up to about a bazillion little wires attached to leads all over her head and face and other leads and different interesting wires taped to her nostrils...in additon to the usual leads and wiress taped to her chest. She also had wires between her toes and an oxygen monitor on her other foot. She looked like a bad science fiction movie version of BIONIC ROBO BABY. Seriously - and trying to reposition her for feeding without tangling her was almost like following a complicated knitting pattern.
The Good News is (and if you've read my blog long enough you know there is ALWAYS Good News) now that I've seen her all hooked up to the machinery - when you take the wires and monitors away she is just a lttle baby...and I do mean LITTLE. She is still a little over 6 pounds at three months. YIKES.
She has pretty labored breathing that changes to gasps with fairly loud stridor (squeaky wheezy gaspy whistle sound...) Dee has some vomiting skills that would make fraternity boys blush. The good news is with her gaspy loud breathing you at least know she is breathing!!!! When she's quiet you need to worry.
From there we proceded to finish off her feeeding through her naso gastric tube (NG tube. It's process for such a little peanut: checking for placement with stethoscope anda small syringe, feeding with a large syringe, venting gas, flushing with a small syringe and such. We do her medicine through the NG tube as well.
We made a discharge plan to return after 5pm to meet with DFS social worker and her team to go over final instructions. I left the hospital and ran a few errands before picking up Cal at school for therapy. OK I went to Babies R Us to find the exact little Fisher Price sound/light machine she had attached to her hospital crib so she would have familiar sounds.....Then home to start dinner until the sitter arrived for the boys.
I didn't leave the hospital until almost 8:30 because she had a few odd episodes - mottling of her skin then going cold and clammy...then her extremities blanched grey white (she's biracial so this localized color change was obvious) but would refill. After we calmed down she decided to impress us with some mucousy vomiting and turning purple and getting very hot and dry. NICE. Then it took 12 minutes to get two vials of blood for more genetic testing. OUCH. Finally we got to leave!!!
The Good News is now I've seen some of her more impressive quirks, I have a much better understanding of the wide array of medically confusing issues she can present in a short amount of time.
Well, we made it through the midnight, 3 and 6 am feedings...but I never did get my nap.....
Wow! She certainly laid it all out there for you. I hope the medical team is able to get a handle on things for her and for you. Sending lots of good energies!
ReplyDeleteGosh 6 pounds at 3 months, WOW! Do they know is there a specific medical problem that she has or is it multiple problems?
ReplyDeleteI am SO impressed you are taking this little girl to try and help her. It sounds incredibly difficult and demanding.
Hoping you can squeeze in a nap soon... hoping all goes well too!
You are going to be soooo good at this, nap or no nap!
ReplyDeleteWow. wow. wow. wow. Bless all of you!!
ReplyDeleteSounds like this is going heavenly thus far. Who needs naps when you have that lovely new baby smell? :-) The pkg is in the mail as of this morning. Hopefully you get it by Friday!
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