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When I found out I was pregnant with Kailey the doctors assured me that everything was great. This was important to me because my first pregnacy was a miscarriage at 4 months and when I got pregnant with my son Dylan I was in the Army and it was a bad pregnancy. I had lots of complications and was on and off bedrest more than I care to remember. Thank God he came out perfectly healthy. My husband and I were ecstatic that all was great. Kailey was born on the evening of February 17th of 1995, weighing in at 6lbs 4 oz. The next day when her pediatrician came in to check us out so that we could be released... my world crashed. |
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The doctor thought he heard a slight murmur and whisked her away. 4 hrs later 8 people walked into my room to tell my husband and I she was dying and about to be life flighted to Duke University Medical Center. The diagnosis: Hypoplastic Left Heart Syndrome (HLHS). Next thing I knew we were on our way to Duke from Asheville where we lived. It was a 4 hour trip. When we got there we were asked not to come until 9:00am so they would have a chance to stabilize and evaluate her. However,we got the dreaded call at 5 am saying she was dying and there was nothing else they could do. They told us no HLHS patient ever survived with blood gasses as high as Kailey's. They couldn't believe she was still fighting. Her brain was hemmoraghing and they felt it wouldn't be long before she died. |
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Her little body seemed so cold. They explained that this was because she had lost all circulation to her extremities. It was explained that this was further proof that she was passing away. Believing what the hospital staff was saying we had her baptized and prayed to God to take her pain away. Later, as I was sitting by her bedside, I saw some urine coming down her catheter. It was just a drop or two but I knew enough to know her kidneys were trying to function. She was fighting! She wanted to live! I yelled for nurse and of course she tried to down-play the significance of it and tried to convice me this meant nothing. But I knew better! At 7 days old she was still fighting and while she wasn't where they would have liked her to be they decided to go ahead with surgery #1. |
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This is Kailey at 2 days old being baptized by the hospital chaplain Judy Westerman. |
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After the Norwood she was so swollen her chest had to be left open. After the excess fluid went down her weight got down to like 5 lbs. She looked so tiny not at all like the child I brought into this world. She spent a month in the pediatric intensive care unit on and off the ventilator. The outlook was still not good so they flew her back to a local hospital in Asheville. She did nothing, just laid there. They had to sedate her every night, the feeds were going terrible, she woudn't try to suck or latch on to me or anything without gagging. She just wouldn't eat the way they wanted her to. |
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Finally she hit the 10 pound mark and we got to take her home. This lasted only a couple of days and she crashed again. She was 4 months old now and needed a major blood transfusion and they had no idea why. They cathed her the next day and did her # 2 surgery the day after that. She spent the the next 2 months in the hospital because of her heart. Then 2 more months due to major feeding issues. Finally, we were all packed up and ready to leave on Oct 9, but she woke up with fever(her first ear infection), so we didn't even make it home for Dylan's 4th birthday party. He was looking forward to her coming home. She was born in February but basically didn't come home until October. That is why I always we didn't get to bring her home from the hospital until she was 8months old! |
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She had surgery # 3 (Fontan) at 3 yrs old and actually made it home about a month later but the next day (true to form) she crashed on me and I rushed her to the E.R. She had Post Pericarditus Syndrome (PPS) which means fluid around the heart. Again we were told that she probably wouldn't survive and she would be flown back to Duke. They did a heart tap and this is kinda funny but when he did the tap and pulled 8 ounces of fluid from around her heart she just went back to normal. Within an hour her sats were back to "normal" and she was awake... she never had to be flown to Duke and was home 3 days later. |
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Kailey at age 3 1/2 getting a kiss from her Uncle after the Fontan |
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Kailey also had the amplatz device put in at 4 1/2 yrs old due to some minor problems that are now corrected, She has spent alot of her life in the hosptial, especially her first 3 years plus several bouts of pnemonia, bronchitis, RSV (3 times), rashes, colds etc... You name in K.K.'s had it.
Kailey started eating orally at 3 yrs old but even now she still has a g-tube at night. She eats really well but for some reason just can't seem to gain the weight on her own. She's been diangosed with cerebral palsy and epilepsy (which just started this past summer of 2000 at 5 yrs old). She walks, runs, talks (85 % of which cannot be understood), has hearing aides, and is happy as a little girl can be. She is overly affectionate to all and is very very hyper(most likely will have meds in future for this) All in all I'd say this child has rewrote the book and has proved how wrong doctors can sometimes be and not to assume anything concerning these kids. |
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I'm now divorced. Kailey, Dylan and I are back in Ohio where I was born and raised. Life is busy but life is good. I am going to college full time. Kailey enjoys school and her teachers the highlight of her class, which is 10 kids, 9 of which are boys *LOL* You have no choice but to smile when you see her coming down the hallway running to you for a hug. She probably gives 50 hugs a day at school (thats my Kailey). |
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Now at 8 yrs old, Kailey is totally potty trained except at nights. She now swims on her own. She recently received great news that her heart and all seems to be doing great. She has developed epilepsy and we are still trying to figure that out and she does have some scoliosis (14%). Kailey gets respite care and nursing care when needed. I am blessed to have them helping me care for her.
I can't imagine my life without her, she has brought so much joy and happiness to our lives. She has taught me so much.... more than she will ever know and for this I thank her and I thank God. I still have my self pity days and ask God why the HLHS and the CP and then I realize because he knows I can handle it and I'm the perfect mommy for her. What a blessing our kids are. When I get to heaven I can't wait to thank God for letting me have her. |
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have visited Kailey's Place since March 1, 2001 |
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