Friday, October 10, 2014

Sorry for the long absence, but there has been nothing to report. Bayta continues to grow. When a classmate asked her about her scar she shrugged and said that is the way God made me. looking back on Bayta's Battles it seems impossible that such a perfect little girl could come out of all that worrying and stress.

Bayta will turn five years old on October 19th 2014. She has been counting down the days since May. She now can read, count to over a hundred even though it "hurts her breath." She is physically active, loves her brothers and knows the names of everyone at her school. In short she takes after her mother... Thank God.

Four years later her mother and I both stop breathing when she says her stomach hurts, but so far it is the normal upset stomachs that come with eating too much.

While we were at St. Louis Children's hospital a full gene study was performed on her. I am going to see if I cant get the results of that study added to her file.

As always I will try to get more pictures on the blog as I get time.


Monday, November 14, 2011

Bayta is now two years old!

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.

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

Saturday, January 9, 2010

A final update... for now

Bayta continues to do well. Amanda has sworn for weeks that she smiles at her... today I actually caught some serious smile action! She lights up the room. She gave us a scare in the last forty eight hours. There is a small bulge poking out from directly below her incision. It is about a dime to a nicle in diameter and sicks out 1/4 of an inch. You can poke it in and it pops back out. We called the surgeons (who pronounced her healed about two weeks ago) and they said that she probably has a hernia, but they will not do anything about it unless it gets bigger or she gets a fever or some kind of blockage. We will have them look at it again in a few months when we go back to ST LOUIS for a genetics follow up. In the meant time we called the local baby sureon and was told by his nurse that if the Dr.'s in St Louis wanted to ask them to take a look at it they would otherwise we should go to St. Louis to have it looked at. It sure ould be nice for them to take a look and say... no worries instead of having to drag bayta to St. Louis which is a 6 hour trip...

Any way our new blog is

if you enjoyed this blog, please feel free to become a member of our new one. Sorry for the delay in the announcement but out internet provider has been droping bandwith since just before Christmas and I have been offline.

Wednesday, December 9, 2009

I am starting a new Blog

Will have it done in a few minutes.

Monday, December 7, 2009

Nothing to report here!

Yesterday we went back to church. It was the first time since we brought Bayta home. Between the boys having colds, and Amanda and I getting some sinus junk, this was the first week we were a whole family. It had been so long since we went that we forgot what time it started. Normally we show up right on time, but by the time we get the boys to Sunday school we either have make the walk of shame or sit in the upper balcony. Today we arrived way early and even had time to show off Bayta before the service started. It felt so surreal to be back. People had so many questions about her. (Although most focused on the extreme amount of hair she has!) Despite being freakishly early we were almost late to church. Bayta to her credit remained quiet through the service. They had bell choir and you could tell she was listening... her eyes were huge. At one point I looked over and it hit me that here I was sitting next to my wife and baby daughter, both healthy, and for the first time it really hit me that we were home. The rest of the day was spent going to a Christmas concert and eating and spending some time with friends we hadn't seen since a day before we left for St. Louis. It was a very good day. I know we get a lot of emails saying why haven't you updated the blog. The simple answer is we have had no stories to report. Bayta wakes up, cries until she gets her diaper changed or her stomach filled and then goes to sleep. Occasionally she will throw us a curve and stay awake for as much as an hour or two. During those times she she stares constantly at "ghosts" and sometimes her eyes will cross and uncross as she tries to discren the shapes and colors in her new world. I know I am biased, but she seems to be a very pretty baby. She is small and has long fingers toes and a neck that seems to be too slender to hold up her beutiful face. Amanda and I both claim she is smiling at us, but we know it is more likely gas than affection. I try to pull her up by her arms to help her develop her neck muscles. She cn now hold her head up independent of our hands for a few moments at a time. She loves to hold your hand and she almost always calmes down if I rub her forehead and cheeks like I did on her first day in this world. She will take a pacifier on occasion, but if she is hungry can project it about a foot away to let me know she is not impressed by the rubber substitute. When lying on the ground asleep she goes into an archers pose (Amanda calls it fencers pose) if startled. That being said she is a very sound sleeper. In fact, yesterday at the Christmas concert the MSU ban made an appearance and a row of trumpets stood within a few feet of us and belted out Christmas songs while she slept on.

The American Rental Association sent us a note that they had made a donation of $200.00 to the Ronald McDonald House in our name. Amanda and I have agreed to match that amount. It is nice to work with a trade group that is so generous.

We are planning to return to St. Louis on the 10th for a followup visit or two with the surgeons and genetic specialists. We will update on the results of that visit.

Wednesday, November 11, 2009

Bayta continues to eat, poop and sleep

She is in all ways a normal baby. In fact Amanda and I are having a bit of an adjustment to the normal baby problems, like no sleep and finding time to take showers in between naps and meeting the needs of the boys. I have gotten a lot of requests for updates, and I have actually written many pages... But the fact is I am still in shock over the events of the last few weeks. God gave us a very special gift when he gave us Bayta. My biggest fear is that we will squander the lessons he gave us. Amanda continues to be so strong. The boys and I are completely smitten with her.

-- Post From My iPhone

It is 10 on November 5th

We found out a few minutes ago that we have been sent home. Amanda and I cried and hugged and made an immediate decision to go home without telling anyone. I will publish this blog at a later date, but wanted to jot down some feelings while I am waiting here for Bayta to wake up.

It is bitter sweet leaving and we are both waiting for someone to come in and say oops you guys are the hemphill baby.... We made a mistake.

Ellis is swinging away in his swing and it looks like we won't get to have a lunch at the Boathouse with his parents afterall... We will continue to pray for Ben and Ellis and all the other children and parents. This has been a life changing event for us and by far the best horrible experience of our lives.

I have had so many people write us and "talk" to us even though we did not get back to you. Those letters and notes helped us keep sane while we were going though this. To all the folks who sent gifts and food and helped our parents watch the boys while we were away .... We are humbled by your generosity. To those who prayed, the results were felt and appreciated. This has been as much a spiritual journey as a medical one and end the end Amanda an I both feel closer to God and the important things in our world than ever before.

-- Post From My iPhone