Bayta's Battles

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

Thursday, November 5, 2009

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!

-- Post From My iPhone

Big announcement......

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

-- Post From My iPhone

Our bill so far......

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

-- Post From My iPhone

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!

-- Post From My iPhone

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!

-- Post From My iPhone

Big announcement tonight!!!

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

-- Post From My iPhone

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:

-- Post From My iPhone

Wednesday, November 4, 2009

Late weigh in

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

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

-- Post From My iPhone

Sorry Judy

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

-- Post From My iPhone

Bayta screening out noises

-- Post From My iPhone

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...

-- Post From My iPhone

Wake up Bayta! Time to eat!

-- Post From My iPhone

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!

-- Post From My iPhone

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.

-- Post From My iPhone