Well...once again it's been awhile since we posted on the blog and are trying to do better at this.
Today was Bella's eye muscle correction surgery...ya know the one where they straighten out her cross-eyes.
Just to get you caught up on most everything else first....
Neuro: still good, progressing with sounds and actually sees pretty well. No shunt. Soft spot is closing but still concave. Bella continues in therapy to improve her muscle tone, but is still not strong enough to sit up on her own yet. She can however, (& does this quite often), roll over to her belly in seconds flat after being placed on her back on the floor. She prefers to roll to her left to get to this position.
GI: The Neocate Jr with Prebiotics lasted roughly a month before she yep, you guessed it, started launching again. We have now started her on the Ellecare powder formula and so far has been less "urpy" but occasionally will still lauch up. If you tick her off, or if another child/baby is crying, Bella is an empathetic cry-er and so she starts crying, then urps, then gags, then lauches. She's still taking Prilosec, we have begun her on some Erthyromycin to assist with gastric motility, she still takes Miralax daily to help with BMs and she will get an occasional dose of Carafate to help coat her esophagus when the reflux is unbearable (mostly to us parents-seeing her urp and gasp is no fun). Oh, and her last weight check at the office netted 12 lbs 11 3/4 ozs. She is now up to a stunning 26 inches in length. Oh, and one more thing, the G-tube is back to a very serious consideration...but after witnessing what she experienced today...another surgery...another date with anesthesia...seems unbearable....
So back to the present day and time: Bella was a happy go lucky girl in the pre-op waiting area today, even did well when we handed her off like a football to the very wonderful Anesthesiologist (who commutes to Primary Childrens from Colorado Springs by the way). The surgery went "as well as it could have" per the Eye Surgeon and lasted roughly 1 hour. Becky got to go back to be with Bella during 1st stage recovery and I got to join them shortly thereafter (about 2 hrs after surgery start time) in stage 2 recovery which lasted well past 5:30pm (surgery started a little before 1pm) when the nurse came to us with an O2 tank- we placed Bella on a nasal cannula at 1/8 of a liter of O2 (up to that point she had been on blow by) and we prepared to take her back to the hotel room to stay in town for the night just in case. Well, we had been getting a little uneasy for a couple reasons: 1. Bella was not able to return to baseline O2 saturation levels w/o the oxygen (expected right? she has chronic lung disease), but she was not really waking up or opening her eyes (who'd blame her, they'd just had them propped open for an hour in the operating room doing a thorough exam and cutting into her eye muscles). So needless to say when the Resident and Anesthesiologist showed up talking about keeping Bella in an observation room, we were not at all surprised. Unhappy? Maybe a little, but Becky definitely felt more comfortable staying at the hospital so they could keep a closer watch on Bella. In the midst of all this recovery time, the nurse had reviewed discharge instructions with us and they all did an excellent job taking care of all 3 of us. So, here it is after midnight: Becky is sleeping in a hospital bed next to Bella, who continues on 1/8 liter of O2, still will not open her eyes, and she is not eating as good as you think a starving, hungry little girl would....but COMMON! This is Bella we're talking about! She doesn't follow the rules, she doesn't do it the textbook way, or even the normal way. She's a premie, still struggling to break free from the textbook premie problems. Patience? You betcha!
The frustrating part (and I was able to vent this to Becky before I returned to the hotel room) is that the eye doc spoke as if this surgery is "no big deal" in the pain department. I beg to differ and told Becky, maybe he should come take care of a child post-op over night to actually experience caring for that child as he/she wakes up from Anesthesia and will not open his/her eyes due to the sensitivity to light or blood shot/ blood stained eyes. Then, maybe he could relay a bit more information pre-op to prepare the parents, no matter what profession they are, allbeit they be health care professionals....
WOW! Ok, I said it....or wrote it. Now, I pray forgiveness for my unorthodox thoughts, but more importantly....pray for Bella that she has a restful night, recovers completely from the after effects of the anesthesia to her body, and Becky, her, and I tolerate the long 5 hour trip (with multiple stops) back to Grand Junction tomorrow (which as you may know got over 3 inches of snow on Wednesday-likely and hopefully it will be all melted before we return).
Right now- I want to give a shout out to my mother in law Suzie Q and sis-n-law Beebs for doing outstanding work with our other 3 children- Ally, Abby, & Dallin, while we are over here in Salt Lake City. I want to give my father Brent a big thanks for helping me give Bella a blessing on Tuesday night. I also want to say thank you to my staff (including Monica) back in the Community Hospital ICU & entire hospital staff for the positive thoughts and prayers for Bella and our family.
We don't have any post-op pics, but I do have a few recent pics to add to this blog.
I really am trying my best to take lemons and make lemonade, so please continue sending the positive vibes my way!
-Matt-
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