Bayta is a daddy's girl! Don't get me wrong she loves her mommy. But when mommy isn't around or she is trying to avoid bedtime she will cuddle and snuggle in a way that makes me feel complete and fufilled. She is also stubbron. When she is doing something she is not supposed to and you tell her to stop she will look right at you, stick out her chin and continue doing what she was while staring you down. I know it is dad's job to brag on his children, but this one is truly special. At two years old she identify more colors than I can, she can count to 10 and sings the alphabet to me. She is a total parrot and will repeat anything I say. She picks her nose and and when you tell her to stop she will look right at you and say "Why?" She loves her brothers and refuses not be included in any of their activities.
Physically she seems normal. Her belly has always been a little distended, but this is barely noticeable and would be at worst considered a "pot belly." Her scar is very noticeable, and seems to be rising up her abdomen as she grows. When she is asked to identify her belly button she points to her scar and has yet to notice that hers is different from others. We worry about her lack of abdominal muscles, but so far she seems to be able to sit up normally. We have essentially been released from care for any issues related to her surgery. We are told that there is a 50/50 chance that at some point the Grotex patch on her diaphram will fail. At that time we will have to take her to the hospital for an emergency surgery. That being said she is completely cleared for all physical activity.
She loves to swim and to run and if any song with a catchy beat is on she shakes her butt like a gogo dancer. (If I hadnt been the one to clean her up I might have thought she was switched at birth!)
The blog is doing its job. Last month over 1700 unique views were recorded. Our hope is that people who have recently found out that their child has an omphalocele or Pentology of Cantrell do not give up hope. While many chidren do not survive, progress continues to be made and it is not uncommon for 50 year old survivors to be chatting with each other online.
Monday, November 14, 2011
Sunday, May 1, 2011
May 1st 2011 Bayta is "NORMAL"
We just got back from St. Louis. We visited with the surgeon who performed the second surgery on her. He said she looks normal. He said the only concern he has right now is that her Gortex patch on her diaphram will fail. What are the odds of it failing? 50/50 according to the literature. But he says he feels a little better about hers because it is midline and thus there is more "meat" that it was sewed to. He says she can play soccer and any other sports she desires witth no restrictions. She is done. he went on to suggest that we could even see the pediatric surgeon here in Springfield (DR. SPILDE). However that DR. has made it very clear that he will not see Bayta because she had work done by other Doctors in St. Louis. So if something happens we will likely drive her or airflight her to St. Louis. That turf war has been the low point of our journey through Bayta's battles.
On a personal note, she is amazing! She eats almost anything, loves her brothers, adores her mother and tolerates her father when none of the other three are around. She is speaking (apple and brover mama dada) she is signing like a star in "Children of a Lessor God." Harrison and Jackson did pretty amazing at picking up Signing Time... Bayta blows them out of the water. She will bring me the special remote to watch her videos and then sign "Signing Time" (a pretty complex sign.) She is beautiful and she affectionate... she is also stubron and willful. When she is mad at me she will look me in the eye and throw any object within reach on the ground. When she wants help she stomps her foot. But when I come home she runs to me saying "Da-deee!!" like I am the biggest deal in her world. She gives me a hug and I know every bit of Bayta's Battles was worth it. I would do it all again in an instant... I can't imagine our lives without our little princess. She owns me.
I will post some pictures and videos of her on the blog. Her scar is still there, but it seems to be a normal part of her. A part of me hopes she will keep it as a sign of how much she has had to endure to get here... but I think we will leave the choice up to her.
We have had a few families contact us from the MOO group. Some had endings like ours some were not so lucky. The first couple that lost their baby hit me personally so hard. I was delivering equipment for my business and I got the email they had lost their child. I literally bawled like a baby. In many ways Amanda and I had tried to convey to them to be hopeful and optimistic that their baby would be born alright. The sad reality is that it doesn't always work out. We were getting ready to send them a box of things that helped us while we lived in the NICU. It never got sent. I tried to write them so many times to tell them how sorry I was for their loss. I still can't find the words... I know sometimes I felt closer to God as a result of Bayta's Battles than I have ever felt before. Seeing death in the NICU almost daily for the briefest instance while we were in that world is so humbling. that being said I still have trouble processing the loss of a child. I think my hangup is one of fairness. And it is my hangup in any event.
I hope that people going through anything like what Bayta dealt with will get some of their questions answered and some peace from knowing that a screwed up middle aged dad made it through; so you can too. If you have any questions about Bayta please do not hesitate to write or call. Email is the best. Thank you again for all your prayers... and for those of you who emailed. Just having someone to "talk" to was an amazing gift.
We got to see our friends from the NICU while in St. Louis. Ellis is AMAZING. He is a beautiful toddler that has the happiest eyes I have ever seen. Seeing his smile reminds me of the dark nights on the NICU floor... Bayta would be asleep and he and I would just hang out and talk. I didnt really know his parents, but he would hold my finger and he always acted like he understood everything I was saying. Seeing his parents and sister was nice too. Watching our kids play together... WOW.
Darick Amanda Harrison Jackson and Bayta
On a personal note, she is amazing! She eats almost anything, loves her brothers, adores her mother and tolerates her father when none of the other three are around. She is speaking (apple and brover mama dada) she is signing like a star in "Children of a Lessor God." Harrison and Jackson did pretty amazing at picking up Signing Time... Bayta blows them out of the water. She will bring me the special remote to watch her videos and then sign "Signing Time" (a pretty complex sign.) She is beautiful and she affectionate... she is also stubron and willful. When she is mad at me she will look me in the eye and throw any object within reach on the ground. When she wants help she stomps her foot. But when I come home she runs to me saying "Da-deee!!" like I am the biggest deal in her world. She gives me a hug and I know every bit of Bayta's Battles was worth it. I would do it all again in an instant... I can't imagine our lives without our little princess. She owns me.
I will post some pictures and videos of her on the blog. Her scar is still there, but it seems to be a normal part of her. A part of me hopes she will keep it as a sign of how much she has had to endure to get here... but I think we will leave the choice up to her.
We have had a few families contact us from the MOO group. Some had endings like ours some were not so lucky. The first couple that lost their baby hit me personally so hard. I was delivering equipment for my business and I got the email they had lost their child. I literally bawled like a baby. In many ways Amanda and I had tried to convey to them to be hopeful and optimistic that their baby would be born alright. The sad reality is that it doesn't always work out. We were getting ready to send them a box of things that helped us while we lived in the NICU. It never got sent. I tried to write them so many times to tell them how sorry I was for their loss. I still can't find the words... I know sometimes I felt closer to God as a result of Bayta's Battles than I have ever felt before. Seeing death in the NICU almost daily for the briefest instance while we were in that world is so humbling. that being said I still have trouble processing the loss of a child. I think my hangup is one of fairness. And it is my hangup in any event.
I hope that people going through anything like what Bayta dealt with will get some of their questions answered and some peace from knowing that a screwed up middle aged dad made it through; so you can too. If you have any questions about Bayta please do not hesitate to write or call. Email is the best. Thank you again for all your prayers... and for those of you who emailed. Just having someone to "talk" to was an amazing gift.
We got to see our friends from the NICU while in St. Louis. Ellis is AMAZING. He is a beautiful toddler that has the happiest eyes I have ever seen. Seeing his smile reminds me of the dark nights on the NICU floor... Bayta would be asleep and he and I would just hang out and talk. I didnt really know his parents, but he would hold my finger and he always acted like he understood everything I was saying. Seeing his parents and sister was nice too. Watching our kids play together... WOW.
Darick Amanda Harrison Jackson and Bayta
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