We got the g-tube placed in June of 05 and still were naive enough to think that she would get better. In May we had so much testing done I recall that she went under anasthesia 6 times that month. I was leary of her going under yet again to have the g-tube surgery. It simply had to be done. So, we had the surgery and stayed on the GI floor for 3 days post surgery to be trained how to use the g-tube, how to change it out, etc etc. We went home with a plan to do 24 hour feeds indefinitely to see if she would finally grow. The 24 hour feeds seemed to work for a few days...no vomit. hallejujah is all I can say....but that was very shortlived. By day 3 she was back to vomiting and retching and dehydration. (At least this was better than when she had the NG, she used to vomit the tubing back out and that was cumbersome to have to put back in). We played with the rates on the pump and would give Brei's tummy breaks but it just seemed like my whole life had become consumed with how to keep nutition in my little precious angel. I was stressed out to the max. I am a believer and know that Christ has a plan for everything but I really was questioning a lot of things and wasn't putting my faith in him like I should. So, I gained lots of weight from just eating to feed my stress of learning how to deal with life. WAtching your child struggle is soooo hard and not knowing how to help is unbearable as a mom. We continued to make life about getting food in our little girl, it was a struggle, there was lots of laundry...I mean, you can't imagine how much laundry. Thank goodness for my mother in law. She came weekly to help me catch up on laundry and to spend time with the kids to give me a break. We still weren't sleeping at all. Brei's little brain just didn't know how to turn off. Doctor's weren't sure how to help so I started researching on my own and found melatonin....AWWWW Melatonin. It worked for us! I mean, for a lot of people I know that it doesn't but for us......by the grace of my Lord and Savior, it worked! And we slept a little more than we had...and she was able to sleep a bit. Nighttime was very scary in our house because Breianna aspirates. So, she's laying down and being fed all night long. That's not a good combination, so someone ALWAYS had to be with her when she was sleeping and being fed. Which was um...everyday for 5 years. Let me tell ya,,,thats great for a marriage....I'm being very sarcastic. Thank God in heaven I'm married to a very amazing man who took his turns with staying up all night even though he'd go into work at 6:00 a.m. He knew how to feed her and do all of her like 14 medicines at the time. He knew all the doses etc. That says a lot.
OK - I'm going to skip ahead to December of 2005. We were in Oklahoma for Christmas and I was so tired I really don't remember much of it except that I got to sleep. When we got back to Ohio after a 15 hour drive I was changing Brei's diaper and I noticed something very cloudy in her eyes. We called the pediatrician and he told us to take a picture, if there's no "red eye" in the picture than she has cataracts. What...on top of everything else she has what???? The next morning we head to Dr. Bloom's at Children's Hospital in Dayton. Sure enough..Brei has cataracts and will need surgery immediately. Surgery was scheduled for the first week of January. Easy enough.......Well Brei got sick. I mean, really sick. She got the flu, was hospitalized for a week for malnutrition because of the flu and then we were home for a day and returned with pnemonia. We were there a few days and got to come home...rescheduled surgery and then she got RSV. We didn't get to have the first cataract surgery until mid Feb. and that was under the close supervision of our new pulmonologist Dr. Fink in Dayton Children's Hospital. The 2nd cataract surgery was in March because all of this sickness had caused some severe pulmonary problems and Brei was now on steroids to strengthen her lungs. This will go on for the next 3 years. And a diagnosis of asthma.
Brei is now two years old and weighs a whopping 17 pounds, she can crawl, hold her head up, sit up, do some weight bearing, is learning to stack blocks, isn't making a single sound out of her mouth, and no food by mouth.
Will write more later.....dinnertime!
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