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

www.pentalogyofhemphill.blogspot.com

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.

I am starting a new Blog

Will have it done in a few minutes.

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.

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.



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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.



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WE ARE HOME!!!!!!!!

This morning when we arrived at the hospital we started to hear rumors that it would be a good day for us! When the doctors came around for rounds, they just smiled and said, " are you ready to go home?"
Of course we broke down and said YES!!!!!

We had to go fill out paper work and wait for certain things to get down, but no one changed their mind, and here we are!!!!! It feels wonderful and scary at the same time; we are so greatful to all our nurses and doctors, we even got to have one of our favorite nurses, Erica,send us off today. She's the one that caught Bayta's O2 drop in the first place that probably saved her stomach and intestines, if not her life.

We have been blessed with so much love and support, we can't even begin to thank everyone. We love each and every one of you and are so happy to be home!


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Big announcement......

We should be able to tell everyone for certain in about 20 minutes!


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Our bill so far......

Over $88,000 and counting.........


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Funny story.......

You know we've been at Children's too long when you can't even remember where you parked your car. The other day Darick and I were clueless as to where the car was at the end of the day. I could have sworn it was on the 5th floor, but no, it was not. We then thought it must be on 3rd floor. Darick hit the unlock buttons to see if were there, but no such luck. As we're getting on the elevator to go to the 4th floor, a lady getting off asks us if we're looking for our car. Surprized, we said yes, only to have her inform us that our car was beeping on the 4th level! We really have spent toouch time here!

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The fifth element

We finally got an answer regarding the fifth defect for Bayta's pentology of cantrell. Our doctor found a really good radiologist to take a look at her x-rays and her upper GI (which is basically an x-Ray). The radiologist was able to actually look at the upper GI and tell that her growth plates were not lined up or showing up like they would on a normal newborn. That is her sternal defect, and it should not make any difference in her health or growth. Like the other defects, it's nice to know that it's there, but should not affect her at all. Thanks to Dr. Liao for going the distance!

And , no, this is not our big announcement!


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Big announcement tonight!!!

We'll let you know our big news as soon as we can!!!


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This sign has taunted us

Every time we went to the hospital we passed this sign. We believe it has something to do with I-64 being closed and the repairs being performed upon it.

Every morning we wondered if it was talking specifically to us:


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Late weigh in

6 pounds 7 oz up 50 grams from last night!!!

We have to buy a cooler to haul milk home with... ;)

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Sorry Judy

I accidently dialed wrong number... No word on weight yet

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Bayta screening out noises

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Eating a smoothie waiting for a weigh in

We have left bayta alone to eat from a bottle for her afternoon feed so she got 80 ml of breast milk. We are basically trying to lay low so she gets plenty of sleep.

Today the nicu lost a baby in the ward next to us. It is the first time we have seen that. The family gathered around to say good bye and they brought in cameras to video their last moments together. It was very sad. I could see our new friend James was particularly upset by it. His little boy Ellis Is doing so well. They will hopefully be home on Monday. James has been here for months and has seen the video cameras before more than he would like... Several times on his families journey they have received news to prepare themselves for the worst. And here he is. You do almost have a survivors remorse. Please pray for a weight gain for Bayta, peace for the families today all over that lost their Babies and continued smooth sailing for Ellis and the other children fighting their way out of the hospitals...


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Wake up Bayta! Time to eat!

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Project "Bass Pro"

Obviously Bayta seems to have a bit of an aversion to the "H" word, so we are instructing all medical staff that work with her to replace the word that rhymes with gnome with Bass Pro.

As always thank you for your support!



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Morning rounds (day 17)

Dr. Liao apparently impressed with weight gains from last night says Friday "could be the day" we need consistent weight gain and no additional problems. I got them to agree to get rid of the pepcid (reflux meds) so we can find out while we are here if she has any real swallowing problems. Bayta remains pretty much non phased by all that is going on. I am trying to arrange a hospital sleepover for us where we basically simulate an apartment and sleep with bayta in the room with us without a monitor. Will let you know how it goes.



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Can't wait to play with my brothers!

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