Saturday, May 16, 2009

Hospital memories

There are many of you who don't know much about my little girl Hannah. I haven't given many updates lately - which is a good sign. But I would like to backtrack a little and start from the beginning.

Hannah was born 5 weeks premature and weighed 4lbs. 13oz. I will have to post a picture of her that little on another post as I don't have that computer file on this computer. Anyhow, we brought her home weighing 4lbs 6oz. and she was so sweet! She never really ate well because she was so tired. At about 6 months old she slowly stopped growing. She weighed 12lbs. And 10 months later she weighed 16lbs. At 2 years she weighed 18lbs.

We saw the Dr. often and he monitored her weight but one day he said take her to the hospital downtown and check her in. She'll need to be hospitilized. I was in shock. It seemed so drastic. Here I was trying to get her to eat food and she just would eat a few cheese crackers for the day and all the Dr. ever did was weigh her and tell me to keep trying. I guess I was expecting the same. He never mentioned that I might have to take her to the hospital. So I went home and called my husband and off we went. My 3 1/2 month old son, Hannah, and myself.

We stayed for 1 week and they did a biopsy on her small intestine and put a nose tube in and ran many tests to see what might be causing the problem. She went through so much that week. All the while being fed 4 bottles of pediasure a day. She tolerated well at first which was surprising since she wasn't used to eating. One test came back and said that she digested food 4 times slower than a normal person and never felt hungry so she just wouldn't eat. They wanted to "teach" her what it meant to feel full and empty. Well, she didn't digest to quickly and being fed through the tube 4 times a day - you can see where that is going.

We went home for her 2nd birthday and went back again for another week stay. While we were home she lost the 1 1/2 lbs or so that she had gained at the hospital. The second round in the hospital was terrible. Hannah threw up constantly. She couldn't tolerate the feeds anymore and she was throwing up the nose tube which had to be put back in. She is a fighter and it was more than traumatic to watch let alone accept that it had to be done at all. She was so brave. And I was so tired taking care of my infant and her in a tiny room.

This is grandma, Maizer, and Hannah.

I am fighting back the tears as I write this. It was terrible. When we went home we tried to feed her through her nose tube and we finally decided after 3 trips to the ER to have it replaced after her vomitting the tube out that we were done with it. One time the nurse inserted the tube down into her lungs. I was terrified and very much done with it all. It was torture on my beautiful little girl. If anyone ever knows someone with a nose tube or sees someone with a nose tube just remember this - they go through A LOT to have that placed and then think of not gagging on a tube you can feel in your throat all the time. Good luck is all I can say about that.

The Dr.'s told us that Hannah was malnourished and that her feeding disorder was unexplainable. Even the small reflux she had didn't figure in as to why she wanted food, got excited about food, and then wouldn't eat anything. She didn't have any developmental disabilities. It was a medical problem and they just didn't know enough about certain feeding issues to say why. What to do now? She needed surgery to have a "G" Tube placed directly into her stomach and to be fed through it all night long while she slept. Well, if we thought hospitilization was extreme this was too much. How can this be? Is this right? We haven't tried everything, surely there must be something else to do besides pumping food directly into her stomach?

Their reply??? If Hannah catches the flu later this year or any serious illness it will kill her. She just doesn't have the fat supply to fight an illness.

Ok - WOW! My husband and I tried to come together but it was very stressful and difficult. We had different opinions of what to do and we fought often. I felt like my whole world was turned inside out and we didn't have long to make the right choices. What those were who knows because the Dr.'s didn't even know why Hannah wasn't eating and growing. After trying medical lipids and calorie enhancing food boosters that are used by many AIDS patients and cancer patients that we had to pay for on our own and supplements adminstered in a juice...we came together and decided to do the surgery. Hannah wasn't gaining any weight and nothing was working. In 2007 a few months before flu season started she was again hospitilized and stayed for 3 days.

In the beginning it was so hard to feed her through it because it was so raw and sore. We had to wait to connect her pump until after she fell asleep. Then we started a very long journey of gain and loss. If she were sick we couldn't feed her because she would throw it up and she also could aspirate or choke on it. So it was 2 steps forward 1 step back.

Below is Hannah last September. She was still very tiny and I was nervous to let her go to preschool but I also wanted her to experience things so after speaking with the teachers, the director, the kids, I was comfortable that Hannah would be well looked after.

Today, Hannah has not been fed through her tube since the middle of January or so. She lost 1 lb right away from an illness but we kept her off the tube and are trying our best to have her eat food and grow all on her own. She still has her tube and we will put her back on it if we need to. So after 2 years and now being 4 years old, she weighes 28lbs 6oz. Every 2 weeks she is monitord at home and this last weight check and nutritional discussion and plan she had lost 6oz. She is still not at the weight she was when we stopped her tube feedings in January but we continue on because she is growing. Slowly but surely! She weighed just under 29 lbs when we stopped her feedings so she is close to being back at square 1. Once she can grow past that mark we can start a 6 month trial. If she does well, grows normally, and illness doesn't have her weight plummet again, then she will have her tube removed and we can live our lives medical equipment free!!! Oh how I dream of the day my daughter will be free of a life evolving around food and eating and weighing and the team of people that help her. Not that I don't love them! LOL

We are on a new path. My beautiful daughter will continue to get well. I have faith that the Lord blesses her and loves her. As I love her so very, very much.

If you find the time, please pray for Hannah. Pray that she can do better and gain the weight she needs to. Our children are so precious! I pray for all families that their children are healthy and happy!


Paging Doctor Mommy said...

I can not begin to imagine what you guys are going through. We struggle daily with getting Reagan to eat, but it has never gotten as severe as Hannah. Currently, Reagan is losing weight, but not enough to worry the doctors. She just turned 3, and she weighs 26.4 pounds. When I read everything that Hannah has had to go through, it makes me more determined than ever to get Reagan to start eating more healthy.
I will keep Hannah in my prayers!

taylorarchives said...

Thank you for sharing that. Hannah looks so happy and doesn't even look worried in those pictures, but I'm sure it was really difficult for her deep down. I'll make sure I pray for her.

.·:*¨¨*:·.Hep*Hep*Hooray said...

i'm crying like a baby reading this. i feel for you guys so much. i keep thinking of my own daughter who was also having HUGE weight issues as an infant. she stayed below her birth weight for almost 4 months. i cannot imagine how you guys must have felt through this. you are wonderful parents and she is lucky to have you!