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WELCOME, GUEST |
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(2 members)
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niylnnrae @a…6 |
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gregery'smam…6 |
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My Tiny Angel had ACDKai's Mama - 05:27pm Mar 12, 2011 ESTKia was born at 37 1/2 weeks gestation. I was told I needed to be induced early because she was not growing. She was estimated to be about 3 lbs. She was born weighing 5lbs 5 oz. and 19inches long, which is average for a baby born at 37 weeks. The pregnancy was very uneventful. Kai seemed to be healthy when she was born, They took her to the nursery so i could sleep, I woke up around 1am and went to the nursery. When I picked her up to bring her back to my room they said she looked slightly discolored, they checked her oxygen, and it was low about 70% she ended up needed very little help at first and that changed quickly throughout the day. By the end of the day she was fully ventilated (tube down her throat). She was diagnosed with Persistant Pulmonary Hypertension of the Newborn PPHN. The hospital we were at couldn't do anything else to keep her oxygen stats up. We were transfered to Primary Childrens Medical Center, where Kai ended up going through 9 days of ECMO. (ECMO made her swell to almost 3 times her size) They took her off and she was doing great for a few days, then her ststas starting going down, at 21 days old she was on maximum life support and wasn't doing well at all. I was finally able to hold her the day she passed away, As I was holding her her oxygen stats were in the high 30's. There was nothing more that could be done to save her, so we decided to unplug the ventilator. My son Jaykeb (Kai's big brother, 18 months older than her) was able to meet her before she passed away. The hospital brought someone in to take pictures for us. I was able to hold her and give her her final bath. It took 8 weeks to get her autopsy results saying that she had ACD (Alveolar Capillary Dysplasia) which they don't have a cure for yet, or a known cause. They think it might be genetic, but because this is such a rare disease there hasn't been much research on it. Kailie Marie November 26, 2011 - December 16, 2011. Forever in my heart
Dgraces Mom
- Mar 19, 2011 3:38 pm
(#5 Total: 8)
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^i^D'Lon Grace^i^ ~ Forever 3 ~ Missing you every second of every day! (I HATE PH!) |
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Hello and welcome to Share. I am so sorry for the loss of your beautiful Kai. She is absolutely beautiful. I loss my beautiful little girl to her very first PH episode. She wasnt diagnosed until she was 2 1/2 and she passed away 9 months after her diagnosis. Shw was 3 years old.
Please know that you are not alone. I hope you are able to find peace as comfort as you walk your journey towards healing.
Take care,
Yolonda
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*fingers crossed*
- Mar 24, 2011 3:26 pm
(#6 Total: 8)
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mom of 32 weeker ~Kaitlyn Eliana |
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Wow. I am so sorry for your loss. I have to say that first. Welcome to SHARE. I'm so glad that you found us. There are so many people here that share in your pains and understand. We are here for you when you need to talk, vent, or say nothing at all. I'll be saying up a special prayer for you and your family tonight. I hope you find the healing here that you seek
(((Hugs)))
Julie
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isuarez21
- Mar 25, 2011 8:19 pm
(#7 Total: 8)
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I am so sorry for your loss, seeing those pictures made me cry. She looked so beautiful her little hands everything. I am so so sorry.
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Maddoxmom
- Apr 26, 2012 3:37 pm
(#8 Total: 8)
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I am new to share and looking for other families that have had similiar situations as mine. My pregnancy was perfect; I barely had any morning sickness. Then, at 28 weeks, the day after my baby shower, I went into labor. Maddox Ford was born November 7, 2011 with a rare skeletal disorder called campomelic dysplasia. This disorder only affects 1 in 200,000 babies, and is almost always fatal. With this disorder he had clubbed feet, bowed legs, one leg was shorter than the other, one arm was shorter than the other, but mainly, his chest cavity was too small to support his lung function. Most babies who have this disorder only live 2 days. He fought so hard for 7 weeks, but passed away on December 26, 2011. He made me so proud. I am so very thankful for the time I got to spend with him, holding him almost every day, and all the pictures of my beautiful baby, but it will never be enough. The what should have beens and the hopes and dreams that I had for my first child haunt me. The biggest thing I am struggling with is seeing other families with their babies. Lisa
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