(I apologize in advance for any typos, grammatical errors etc....this is raw emotion and I'm typing as fast as my hands can go to keep up with the memories flooding my brain).
My beautiful blessing #2 was born on May 10, 2004. I had no idea at time what changes were in store for our family. She came into this world very quickly, my water broke, we headed to the hospital and within a few hours she was here! Nothing concerning yet.....then we get home. She doesn't sleep......EVER. I mean, I wasn't being one of those overtired moms who exaggerate everything...she literally never slept. I remember thinking, is this colic...? I read all about it...no, not really but there was really no other explanation...so we called it colic and moved on....except how do you move on when you are completely sleep deprived and are beginning to realize that something is terribly wrong here. Like within 2 days of being home you realize that your child isn't really eating....I mean she would nurse, but it would be little at a time and she never really seemed to be swallowing anything. I think I was too sleep deprived to realize the enormity of this problem. My child is not eating and I have to help her. Doctor's thought I was nuts to say the least. So we started this journey with our pediatrician called....come in every morning for a weigh in....WHAT? You want me to WHAT? Come to your office with my newborn and 2 year old to get her weighed...pay an office visit plus a copay for you to tell me she's not growing. This is insane. But I did it...because at the time I had no idea what else to do...and quite franky, I was too tired to argue. My husband was a football coach at a small college at the time, my parents lived 15 hours away so it was well....ME most of the time and my inlaws helped when they could but I couldn't expect them to move in with us...could I? And remember, I still really didn't know how much life was about to changed......
When Breianna was one month old she weighed about 6 lbs. No so good considering she was 8lb 8 oz. at birth. Things weren't looking good, doctor's were beginning to think I simply wasn't feeding my daughter and I was so emotional I couldn't even think straight. My daughter was wasting away to nothing and I didn't know how to help her. By the time she was 3 months old I realized not only had she not gained any weight at all, she couldn't do anything. She hadn't met a single milestone and it didn't look hopeful to me that she ever would. Was my daughter going to die? I remember exactly where I was when I was thinking this. I was sitting at our back deck trying to get her to take a bottle and she screamed like I was torturing her. I know now that she had an aversion to anything going into her mouth because it's painful and scary for her. At the time I didn't know what the problem was. I just remember thinking...if she doesn't take this food she is going to die. Her output was a diaper a day and I knew from already having a child that this just isn't good. So we continued to go for weigh in's with our local pediatician at at 6 months I had kind of had enough. I'm embarrassed to admit that it took me that long to "get in gear" but I was tired and didn't know what to do to help her.
The changing point for me was when I was visiting my friend Keri and we were talking about how scary this was that Brei wasn't reaching milestones and that she still looked just like a newborn. I left Keri's and went straight to my pediatricians office....I stormed in on a mission....I did not know how big this mission was going to be at the time but I was renewed to save my child. So, I had the nurses and doctor's watch me nurse and try to feed her. I told them that something was very wrong with her eating...things aren't clicking for her to know what to do. I said I am not leaving here until someone gets me some help. I left with an appointmet to the Feeding Clinic at Cincinnati Children's Hospital. So, a week later we are sitting in the feeding clinic and feeling all hopeful that these people are going to "fix" my child. They bring in specialists from GI, Neuro, and Genetics, ask a ton of questions and then bring in an OT and SPT to evaluate Brei. They send me home with all these exercises and an appointment to come back next week. There's also all this paperwork for a program called Help Me Grow. I get a call the next morning from Help Me Grow and an appointment is scheduled for them to make a home visit. I'm not sure what it's all about but at this point I'll just listen to what they have to say.
So we got into the Help Me Grow program and at the time they offered home based OT and PT, we visited the feeding clinic every week for awhile but they didn't seem to be helping. They were running so many tests on Brei that for awhile I felt like we lived at the hospital. We were literall going there everyday for awhile. We started doing OT, PT, SPT at Cincinnati Children's o top of the Help Me Grow program hoping that she could start catching up on her milestones....hahahahaha...I was naive. :)
By 8 months Brei was so malnourished that I demanded an NG tube be placed. We had talked a little about it but the feeding clininc wanted to exlore other options first. Well, I realized that they were exploring the....let's wach this mom because I don't think she's feeding her kid option.....then I heard the word munchhausen and knew this was not good. So I went on survival mode kind of....I told them I didn't want to continue these appointments, that I wanted to see the chief of Neurology and that I wasn't leaving until we had an NG tube. So this began our journey into Home Health companies and NG tubes. They obliged my demands for an NG...I'm not sure why except that God made it happen. We went home to wait on Home Health to deliver a feeding pump and a list of how to feed her and at what rate. Well how hard can it be? YOu teach me how to use then pump and I feed her through this tube....let's get going so she can grow. I thought all my problems were going to be over. I didn't realize they were just beginning.
So we learn how to use the pump, get the formula delivered and begin to feed her at the rates suggested by the docs. Within an hour we are covered in vomit, Brei is in and out of consciousness and she's becoming more dehydrated than she was before. So we wait awhile and try again. More vomit, retching, passing out, dehydration, hospital, IV fluids, more tests, come home with a plan to feed. This goes on and on for a few months. Sleepless nights, retching, vomiting. Vomit all the time. I don't mean like reflux vomit I mean vomit until she passes out, we head to the hospital for IV fluids kind of vomit. Friends couldn't handle this horror and I didn't have many....the ones that stuck it out...Thank you and I am indebted to you for life. So we begin to talk to GI about a g-tube. They've had results with placing a g-tube and then the child could tolerate feeds better. Still no doctor's had mentioned motility...a big word...but no one had said a thing and I didn't know about it yet......so...we agree to a g-tube. The surgery will be in June 2006 just 1 month after her first birthday. By this time, we find out she has vision problems, she's gotten glasses, she's not met any milestones and she weighs just shy of 12 pounds at her birthday party. Yippee...let's celebrate...celebrate what? The fact that genetics said she probably wouldn't live or that I as doing puke laundry in all of my spare time. Did anyone out there realize that I had a husband and son to think about too?
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