A new week of beautiful Spring weather has brought with it some relaxation and retreat from the ever present worries of the past month. Our family enjoyed a fun weekend out doors during a church family get away! The fresh cool air and peaceful surroundings helped calm our souls and forced us to breathe deeply of the Lord's goodness.
Although Abby got sick on Saturday with strange seizures and vomiting, we were able to stay in the mountains with our friends and family instead of rushing to the hospital. At one point it seemed imminent that Abby was starting one of her relentless, "status"(prolonged) seizures, but thankfully she finally fell into a restful sleep. We had prepared to leave and the van was packed, but a dose of Tylenol seemed to stop the seizure cycle.
Before our family drove to TN for this wonderful weekend, we had a lengthy discussion with Abby's GI doc about the test results we had been given. Without repeating all the details, our conversation mostly boiled down to the fact that Abby's esophageal biopsies continue to show reflux regardless of aggressive treatments. He felt this finding in addition to her clinical symptoms pretty much closed the deal on the need for surgery. We agreed that if a second Fundoplication gave her a higher quality of life, than it was worth the risk of surgery.
We have an appointment with a GI surgeon June 4th, at Children's Hospital in Birmingham. In the meantime we have been trying to squeeze in sooner, waiting for a cancelation. We are hoping that she could have the laparoscopic method done this time because it is a much simpler procedure with a less painful recovery. Because Abby has had this surgery done before using the "open" method, we aren't sure if she could have the lap method this time. From what we have read it is unlikely that she can, due to the scar tissue in her abdomen from multiple abdominal surgeries in the past. The open method includes cutting her abdominal muscles again, which will set her back physically for a long time.
Just like most procedures there are no promises of complete healing, but we are praying for exactly this! Looking back to her first Fundo (June 2004) and the months following, we now recognize all the ways she made progress when reflux wasn't her main enemy. She was eating some baby foods and was able to gain weight with her G-tube feeds. She was a happy, vomit free baby. We are praying to see these and hopefully more improvements post-surgery this time around!!
It has been a difficult, time consuming and draining decision to do surgery again. At this point we feel that we have given enough effort and time to see improvements, and none have come. In reality, over the past 6 months her symptoms continue to worsen.
I know I've said it before, but I have to say it again... I Hate Reflux! Never in a million years would I have imagined my child could suffer so much from something most people consider as a mere discomfort or nuisance. It has become a life altering disease for Abby, as I know it has for other preemies as well. You just can't imagine how difficult it is to not be able to feed your child, watch them enjoy yummy ice cream or drink a delicious smoothy, until you have one yourself. We've long passed the initial disappointment of it and have come to the place where we just want her body to be fed and for her to grow and thrive.
At feeding clinic (every 6 month appt.) last week they refused to try to feed her anything because her Barium swallow test had labeled her "at risk for choking and aspiration" due to her inability to swallow. Instead of inability I would say it's more of a refusal to swallow. So we spent the whole time discussing her inadequate growth and the changes we needed to make to her j-feeds. Basically she has not gained any weight in the past 2 years but has grown over 3 inches. She is 0%ile for weight and 1%ile for height.
Honestly I'm not terribly worried about the growth chart because Abby is her unique self, a former micro preemie and a child with CP. All of which should (and some do) have their own growth charts!
If you have #1: read this far, and #2: haven't fallen asleep, than you truly do love us! The wordiness of this post is probably due to the lack of posting lately and the depth of emotions at our house. Please forgive me, I'll try to keep them shorter!
And thank you for caring enough to trudge through the details with us. But most of all we covet your faithful prayers for our little warrior!
