We've been home for two weeks now and loving it. Yesterday we took Hannah out for the first time because we wanted to get a flu shot. That wasn't easy. Hannah has a strict schedule of when she gets her meds and feedings so we didn't have much time to do everything. Needless to say that we were an hour late on her feeding. Oh well, stuff happens.
Today she weighed in at 9lbs even. She has been gaining 1 ounce every day on average since we've been home. That is exactly what the doctors want to see and I would like to say that mom was right once again. The doctors wanted to fortify her milk (suppliment it with formula) and mom didn't like that idea. It was hard enough for mom to conceed not being able to nurse her new born let alone give her formula. Well in the end mom was right and Hannah didn't need any added formula. We might add that we tried it two other times before and Hannah just spit all of the food up anyways.
Hannah has two nurses now that watch her at the house. One during the day and one during the night. I will tell you that I was very hesitant on getting a night nurse (she comes from 10:30 pm to 5:30 am while we are sleeping) but after we missed one of her medications and then just last weekend she started to show signs of digression I realized that Hannah is still much too delicate for any slip ups in her care giving so I bit the bullet and decided to go with the night nurse. I just felt like I was not being the parent that I should be to my daughter by getting help during the night. I'm stubborn and thought that we should be able to do it since we are her parents, but then again we don't have the typical child right now. Once she keeps growing and completely heals from the heart surgery then things should be much more normal.
Hannah keeps on impressing the doctors and assistants. The neurologist was truly impressed with Hannah's interactions with people. He has seen 10 other charge babies before so he had something to compare Hannah to. The TARC lady came over today to work with Hannah's vision. Before she came over she read up on CHARGE so she knew what to expect. Well, once again she was impressed. Hannah was following the objects that were placed in front of her. We also learned how we can help Hannah develop the sight that she does have. Oh, and one side note, we were the second family that didn't care much for the opthomologist from Topeka and there are other doctors that weren't impressed with the doctor either, so I guess we weren't alone when we decided that we would go find someone else to help us.
Hannah also has occupational therapy everyday. She has cute little splints for her hands and we do stretches for her arms and legs every day. When we were in the hospital she was extremely tense (high muscle tone) and we couldn't get her fists or arms open. This is a side effect from the open heart surgery. Check out the pictures of Hannah before and after:
Today she weighed in at 9lbs even. She has been gaining 1 ounce every day on average since we've been home. That is exactly what the doctors want to see and I would like to say that mom was right once again. The doctors wanted to fortify her milk (suppliment it with formula) and mom didn't like that idea. It was hard enough for mom to conceed not being able to nurse her new born let alone give her formula. Well in the end mom was right and Hannah didn't need any added formula. We might add that we tried it two other times before and Hannah just spit all of the food up anyways.
Hannah has two nurses now that watch her at the house. One during the day and one during the night. I will tell you that I was very hesitant on getting a night nurse (she comes from 10:30 pm to 5:30 am while we are sleeping) but after we missed one of her medications and then just last weekend she started to show signs of digression I realized that Hannah is still much too delicate for any slip ups in her care giving so I bit the bullet and decided to go with the night nurse. I just felt like I was not being the parent that I should be to my daughter by getting help during the night. I'm stubborn and thought that we should be able to do it since we are her parents, but then again we don't have the typical child right now. Once she keeps growing and completely heals from the heart surgery then things should be much more normal.
Hannah keeps on impressing the doctors and assistants. The neurologist was truly impressed with Hannah's interactions with people. He has seen 10 other charge babies before so he had something to compare Hannah to. The TARC lady came over today to work with Hannah's vision. Before she came over she read up on CHARGE so she knew what to expect. Well, once again she was impressed. Hannah was following the objects that were placed in front of her. We also learned how we can help Hannah develop the sight that she does have. Oh, and one side note, we were the second family that didn't care much for the opthomologist from Topeka and there are other doctors that weren't impressed with the doctor either, so I guess we weren't alone when we decided that we would go find someone else to help us.
Hannah also has occupational therapy everyday. She has cute little splints for her hands and we do stretches for her arms and legs every day. When we were in the hospital she was extremely tense (high muscle tone) and we couldn't get her fists or arms open. This is a side effect from the open heart surgery. Check out the pictures of Hannah before and after:
Before
AfterBecausae we work with her every day she seems to be back to normal.
Hannah is in good hands right now. We are extremely grateful for all of the prayers that were given for our family's behalf. We have seen many miracles happen in the long couple of months that Hannah has been with us. Our hopes are high for her and she is surpassing them already. Hannah loves to lay flat on her back and stretch her whole body and when she is doing that we can get her to laugh and smile. She has definately come a long way.
1 comment:
Glad to hear she is doing so well! You are doing a great job! I'm glad that you have so much help, what a blessing!
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