October 8th. 2011 ~ "warning...pictures at bottom are graphic"
We had a couple of appointments this week and Myanna is doing great! She is now 10lb, 7oz and her scar is just a thin line. We still have to be careful holding her and picking her up for another 4-5 weeks, but other than that she is moving forward with flying colors. She is eating baby food now, just one day and is enjoying it. We were told to keep her away from anyone sick though because of RSV, she is a preemie-but not able to get the shots so we need to protect her since she had open heart surgery and her breathing is still a little elevated. The doctor asked if we could put her in a bubble! Thanks to all for prayers, they have worked wonders with our little miracle.
I'm finally fitting into the size 0-3 months clothing people have bought for me! I am trying to figure out how to sit so mommy bought me a bumbo seat, photos as soon as we get it in the mail. I like to rest and practice sitting with my boppy seat too. There is some obvious hair growing on my head, finally too. |
MYANNA IS OURS!!! ADOPTION FINALIZED 9/28/11 @ 3PM!!!
We Are Home at Last! 9/21/11
I believe we have learned alot about infants and hospitalization and surgery...it has been very hard on her and she has trust issues that have devoloped besides still being in pain. I realize as I sit and watch her playing at home that this is her safe, secure place and we are her comfort. Thank God we could be at the hospital 24/7 with her to always reassure her. Every day there was someone who wanted to do something painful or uncomfortable to her and she just didn't understand. We couldn't explain to her that it was to make her well. By the last day her smiles were slowing and her meltdowns at the end of the day had gone on for hours and she was totally inconsolable. She trusted no one there and screamed for temperatures and even stethoscopes of doctors who were just to listen to her. We were very fortunate that her own personal pediatric cardiologist was there the days leading up to and the day of her release from the hospital. She was always comfortable and smiled with him, even fell asleep while he performed an eccocardiogram in the past...but she wouldn't even smile at him and he knew it was time for her to go home and heal.
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The day of our homecoming, she did not gain weight. She actually lost again. The doctors told me they were not sure they wanted her to leave. They did another Ecco, an Ekg and more lab work. She had no more veins working in her arms or hands so they went to the top of her foot. Later, her doctor came in and said we could leave because he had complete trust and faith in me and knew I would get the calories in her that she needed. I was so very thankful to him.
Our trip home was wonderful despite rush hour traffic. She was so happy in her carseat-which was amazing to all who knew her because she hates her carseat. I think some how she knew her nightmare was done. At home she played for hours, but at bedtime I think she had nightmares. For about an hour she cried out in her sleep and Chris or I would go up and reaasure her that we were there. Even today, as she sleeps in my arms, she grabs my hand repeatedly just to make sure I am there. I think I will be holding her for quite some time. I want her to know that she is okay and so very loved and we will always protect her. Thank You all for prayers. |
9/18/11
Myanna has accomplished her recovery with leaps and bounds due to everyone's prayers and her strength. She is now off of her oxygen, all of her tubes have been removed except one iv used for medication. She is smiling, cooing and interacting with everyone now. She had a bath today and we washed away all the sticky remains from surgery. She is eating every bottle and is now up to 75 ml every 3 hours. We really hope she will start putting on some weight fast. She is still losing some water weight from the fluid retention due to ivs pumped during surgery. She is currently on only motrin and tylenol for the pain and doing just fine. Dylan and Amanda came home from college friday to visit with their baby sister. |
Well, the last couple of weeks in August Myanna started to refuse some bottles and it got worse and worse. By the beginning of September she was only drinking a total of 11 ounces per day! On friday, September 9th, 2011 she visited her cardiologist who decided it was time to admit her and run some tests and insert an NGtube so that we could still get the amount of food in her necessary for her healthy growth. They ran tests like echocardiogram, x-ray and blood tests on Saturday and on Monday they set up an appt for her cardiac cath for early tuesday morning. The cath showed that her lungs were in good shape and they decided it was time to fix her holes in her heart.
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She was born with an ASD and a VSD, the VSD which was causing a lot of her issues like rapid heart and respiratory rates. The doctors thought that if these were repaired that maybe she might have more energy to eat. Her surgery was on Thursday September 15th, one day after she turned 5 months old. She was barely 9 pounds. This was to be a complete open heart surgery with heart and lung bypass machine. It took over 4 hours until we were able to talk to the doctor, and to everyone's relief and answer to our prayers-her holes are repaired and she is sedated so that she can heal. Thanks - everyone, for all your prayers and support.
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"Never be ashamed of the scars life has left you with. A scar means the hurt
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