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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Good morning!!! (day 17)

Bayta is awake and bright eyed today!




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Tonights weigh in day (16)

6 pounds 5 oz (up 2 to 3 oz over yesterday)

48 hour countdown begins!!!! Yippee!!!!

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Night rounds (day 16)

All we are missing now is weight gain... "Consistent weight gain." per dr. Liao



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Surgeons out of her diaper tomorrow

There is still a big bandage over where the central line used to be in her groin. A dr I don't know just came up an said he was gonna remove the bandage tomorrow.


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Just looking around (day 16)

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A shot in the dark made my day! (day 16)

I have been working on a blog trying to explain why I picked Bayta as a name for my daughter. Mind you the twins on are left are named johnetta and janeisha. The mother of the twins, who doesn't come in very often, was wondering out loud where we got such a strange name Amanda was feeding Bayta and was behind a privacy curtain and heard everything and let me know about it. We both got a huge laugh out of it. But later that night I had put Bayta to sleep and Amanda was pumping so I googled "Bayta" and for the 1000 th time ran across links to book sumaries explaining the Issac asimov novel that the name comes from. Below that is a link to bayta maring a professional who lives in Washington. I have pointed to her page more than once and said to my wife "her dad called her Bayta and she turned out all right!" truth be told i believed that she was probably named after the surname bayta which seems to be popular in other countries.

Any way last night decided what the heck and sent her this email:
Weird emailMonday, November 2, 2009 7:46 PMFrom: "Darick Hemphill" View contact detailsTo: "baytam@u.washington.edu" It is probably too late to ask this, but I am in the nicu at children's hospital on st. Louis. My daughter is here and hopefully we will be out this week. We named her Bayta Sophia hemphill. You are the
only other Bayta we could find... I know we are total strangers, but
we are wondering how you like your name and why your parents picked
it? Ours started as kind of a joke, I liked the name from an old Issac
Asimov novel, but the more adversity our little girl went through the
more the title seemed to fit her... She is a fighter and beautiful
like a Betta fish... Also stocks with high betas do better in adverse
market conditions... Told you this was a weird email. Anyway, I know
your are a busy person, but in the nicu you have some free time. (days
and days of it) I guess I was just wondering how you liked having the
unique name, if kids made fun of it or thought it was cool... And
could you please refrain from running for president of the united
states because we kinda wanted our Bayta to be the first.

Again hope this email finds you well and does not annoy you! We love
your name! Darick and Bayta Hemphill Springfield, mo

Www.baytasbattles.blogspot.com
Sent from my iPhone
Baytasbattles.blogspot.com

HER RESPONSE CAME IN A FEW MINUTES AND MADE MY DAY!!!!

Darick,

So happy to hear from you and I am *thrilled* there is another Bayta in the=
world!!!

Yes, my name also comes from Foundation and Empire by Asimov. My dad loved=
the book and picked out the name two years before I was born.

I love my name and it has been an EXCELLENT one my whole life. People did =
play with it when I was a kid, calling me "Alpha Bayta" or "Bayta Max" or "=
Bayta Carotene," but those were mostly affectionate and not mean. It is gr=
eat having a unique name and it's kind of a fun conversation piece at parti=
es. Occasionally, I will meet someone who has read the book, so they think=
it is very cool.

Your email is not that strange. I received a similar one several years ago=
from someone in Argentina. I will forward it to you!

I have also found several Bayta's on Facebook, and they are all named after=
the Asimov character.

Congratulations on your new arrival and I hope you get to leave the NICU so=
on! I am expecting my first child in April, though don't think she will b=
e Bayta, Jr.

Best wishes and *thank you* for writing!

Bayta

SHE FOLLOWED UP WITH THIS RESPONSE WHICH ALSO MADE ME PERMAGRIN!
On Nov 2, 2009, at 7:57 PM, wrote:

> Hi, Darick! Here is my email exchange with Luis Argerich from
> Argentina.
>
>
>
> Cheers!
>
>
>
> Bayta
>
>
>
> From: Luis Argerich [mailto:lrargerich@gmail.com]
> Sent: Friday, July 25, 2008 12:03 PM
> To: Bayta L. Maring
> Subject: Re: Question about name origin
>
>
>
> Hi Bayta,
>
> Thanks a lot for your answer!
> I'm a huge fan of Asimov's Fundation and I also loved the name Bayta
> that is why we are trying to name our baby girl with that name.
> I wonder where Asimov found the name or if it is just something that
> came out of his great mind.
>
> I will let you know if we succeed in naming our baby Bayta
> Again thanks a lot!
>
> Luis
>
> On Fri, Jul 25, 2008 at 3:11 PM, Bayta Maring
> wrote:
>
>
> Hello, Luis!
>
> I am so sorry that I did not respond to your previous email, as I am
> so happy you are considering the name Bayta.
>
> The name comes from a science fiction novel by Isaac Asimov, called
> "Foundation and Empire," written in 1952. It is the second book in
> a series of books called "The Foundation Trilogy," that were
> originally partially published as short stories in "Astounding
> Magazine."
>
> It is a bit difficult to explain why the character of Bayta inspired
> my parents to give me that name, but I will try to explain:
>
> The Foundation Series is based on the premise that a genius social
> scientist has figured out a type of mathematical process by which we
> can foretell the fate of the universe. However, he cannot account
> for statistical anomolies, such as mutants. In "Foundation and
> Empire," a mutant called The Mule is gaining power because he has
> the unique ability to manipulate people's emotions.
>
> On her honeymoon, Bayta meets a strange-looking musician and grows
> fond of him and shows kindness towards him even though everyone else
> shuns him. It turns out that the musician is The Mule and he
> chooses not to manipulate Bayta's emotions because he appreciates
> her "pure" kindness and affection. Because he does not influence
> Bayta, she turns out to be the only person who can foil his plans to
> conquer the universe.
>
> That is the short version. Of course, you can read the book, but
> Bayta is a very strong, feminine character and many people believe
> that Asimov based the character on his wife, Gertrude.
>
> Here are a couple of web sites that might give you some more
> information:
>
> http://homepage.mac.com/jhjenkins/Asimov/Stories/Story180.html
> http://en.wikipedia.org/wiki/List_of_minor_Foundation_universe_characters
>
> There is also a band in Austin, Texas called "Bayta Darrell" and
> they are named after the Asimov character. I have also made contact
> with a woman in the U.K. who is named Bayta and she is also named
> after the Asimov character.
>
> I should add that I love my name and would be proud and honored to
> have another "Bayta" in the world.
>
> Best,
>
> Bayta Maring
>
>
>
> On Fri, 25 Jul 2008, Luis Argerich wrote:
>
> Dear Bayta,
>
> My wife and I are trying to name our baby girl "Bayta" but the
> paperwork in
> the country where we live is getting difficult.
> May I ask you if you have any information about your name origin and
> meaning
> so we can use it in our case?
>
> Thanks a lot in advance!
> Luis Argerich,
> Buenos Aires, Argentina
>






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What are the odds?

Last night Amanda noticed that Ellis was dressed in the exact same outfit as Bayta. This wasn't planned. These our not hospital issued clothes... And both parents had been given the outfit as a gift... It is like there is a huge improbability field in our little corner of the NICU.



Bayta



Ellis and his dad James

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last night was hard (Day 16)

Amanda was feeding Bayta and noticed that after she burped her her heart turned blue and her pulse dropped and her oxygen levels dropped. Baytas lips also turned blue for a few moments. She said she had noticed the same behavior earlier that day. I of course went into daddy mode and we called the Dr. in to figure out what was going on. The nures corroborated Amanda's story, but like Amanda the first time assumed it was a sensor error. The consensus after we talked a bit is that she is having reflux. The plan is to watch her feed and see if we can recreate the event in the controlled environment of the NICU. Shortly after this she was weighed and we got the bad news about more weight loss. Again we expect some weight loss, but every time we get a result like that it means we have 48 hours more before we can get her out.

So just to sumarize we woke up hoping to hear "you are going home tomorrow" and instead we are going to be lucky if we are out this time next week. Add to that the fact that we aren't sleeping, miss our boys and Amanda is still feeling a sore from her major abdominal surgery and we felt like the Bad News Bears at the beginning of the season. We are now one of the "oldest" families in the RMH. Got to see James last night and he was doing well, the radiation seems to be making him a little nocturnal... and last night I got talk to him a bit, but I felt like I could have closed my eyes and passed out. I hope he didn't notice.

There are new families in the house and we introduced ourselves, and had to go through the "story" which is so wearing on us... and then we finally got back to our room and Amanda was so tired she finally let it out an we had a good pity party before I got her to bed. She had to wake back up in 1 hour to pump so I told her I would take care of the alarm and getting the bottles set up and let her sleep. I couldnt sleep and she looked so peaaceful I let her sleep a little longer... which I hope didn't mess up her schedule. but we made it to a one oclock feeding and that left us open for a 5:00 AM feeding and then a little rest before heading back to the hospital.

Amanda claims she is feeling better and has declined going back to Maternal Fetal Medicine. I am watching her like a hawk today and have even threatened to call her mother if I see even the slightest twitch of pain on her face.

On the way in to the hospital she pointed out that there is only a fair chance that we will be home for Jackson's Birthday. (November 8th) That made us both feel really tired and sad.

Yesterday while Amanda was feeding Bayta I took a class on baby massage. It was pretty interesting and I can see me using the techniques on Bayta and the Boys... I wish I had known more about these techniques earlier because I think it is hard sometimes for the dads to feel needed during the first few months with a newborn. But like so many things in this wonderful terrible place when we went around the table talking about our kiddos the lady next to me had just lost one of her identical twin boys. She was very sad, but at least she had another child that looked like she was gonna make it. It makes all our complaining above seem pretty insignificant.

Good news is that Ellis in the next crib over is continuing to get the green light! He may be able to get out of here this weekend or possibly early next week! I can see his dad is very cautiously optimistic. They are a terrific family and we hope they get out and stay out.

Tonights weigh in

6 lbs 2 ounces

Pray for her weight gain and her generally. She is sleeping now and needs a peaceful night.




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All these people have to agree

Then bayta can go home!



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To do list (day 15)

Get Amanda healed

Payroll

Car seat inspection

Get groceries

Feed bayta every three hours...



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Just got done with feeding and rounds

Amanda is pumping so I am talking to Bayta who is wide awake!

Today we both thought tomorrow would be our exit date... Today we heard by the end of the week possibly.

That sucks! I know they are doing the right thing by being cautious.... But I want to get Bayta in her own bed.

Allena your emails are not going through. Email me at lawyer4rent@gmail.com

Or relay through tAmmy.

I will call u when she passes out.



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Allena

Please don't call email!!! You are gonna get me kicked out!!


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Bayta's weight (day 15)

6 pounds 4 ounces



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Happy Halloween!

I am so cute it is Scary!!!!!


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Our little pooh bear!

When we got here this am she was dressed. What a cute outfit! And the buttons leave room for her sensors!


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Mystery gift

Don't know who sent this picture, but we love it! Amanda and I both have our theories about what is going on with the woman and girl in the picture. If you did send it please let us know.


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Lost blog posts

The last few days I have discovered several missing blog posts... Most often this happens when I get timed out of the public wifi. I will attempt to recreate them. Sorry for the trouble.

Here is a card made by a volunteer that has the wrong date on it.... Yes she does have some freakishly long toes!


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Updates (Day 14)

Amanda got one test that said no bacteria in her system. The more advanced test says there may be bacteria in her system. Hopefully now they can culture her and find out if there is bacteria... and if there is what it is. She seems to be doing well in all other aspects, but still it is disturbing. The Dr. in the walk in area changed her story several times while I talked to her... (she fell apart on cross x.) So hopefully tomorrow Maternal Fetal Medicine will be able to answer our questions.

Bayta is beautiful! I swear she was smiling at me when I held her, but by the time I got the camera out she stopped. She has a lot of hiccups which I will try to find out if that has anything to do with her diaphram surgery or not. Tomorrow is my day to be jerk dad and get some answers for us that we need to have before leaving. The short list includes a letter from her surgeons saying what she can and can't do going forward. I alos want a copy of her medical records before I leave. The have told me several times that it is no big deal to have them electronically delivered, but I want a set just in case. After we check out we won't have a chance to get things done like we have now. There are still some genetic tests I want the results for. I have asked several times for them and I have been told they are likely negative in light of her Pentalogy diagnosis... but I want to make sure we know that before we leave.

On a personal note last night we took off and went to a Blues game with little James and his mother. He is really a neat kid... Before the night was over I confirmed that Amanda and I are NOT hockey fans, but it was a lot of fun. James danced everytime they played music so we were on the jumbotron several times. His mother has been so brave. The other day she told us that James told her not to worry.

Before we left for the game we went back to RMH to do some laundry and eat. THere was a family that provided dinner. I asked her why she volunteered and I was so glad I did. She was there with her two boys. She told me she had a girl who was 9 years old was riding her bike and had an accident. The accident resulted in her daughter being a quadraplegic with no ability to speak. She said she was like me and had no idea what Ronald McDonald House was all about. Once she got her daughter back home she wanted to give back to RMH so once a month she provides dinner for the families staying here. She also has a web site called www.helmetsforhailey.org that actually gives away free helmets to children. She is the third family we have met while here that have had their lives changed in an instant by a head injury. One was from an ATV (well we all know that can be dangerous) the other was from a little girl who fell of a swingset in the back yard. We spend a lot of energy keeping our boys safe... but a swingset? Wow. How many times have my boys been playing on the stairs, jumping on a bed, or swinging in the backyard. It is exhausting to think about how lucky we have been.

Today was the first day without rain since we have been here. It was chilly but nice to get a dose of vitamin D. We plan on staying until 9:00 tonight so we can be here at the weigh in. I will get the lbs and ounces for those of you who have been asking.

Amanda wants to thank everyone for the support, encouragement, advice and especially the prayers.

Allena

Send email! Don't call!


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More bling for Amanda

She is going for a red white and blue motif!




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Difficult patient

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Back in the hospital again

This time it's Amanda. Just being safe... Had to drag her in by the ear... Any ideas where she gets her stubbornness? Got to hold Bayta for a long time this am. She is beautiful! Had to put her back in her crib while she was awake... That was hard... But if mommy isn't healthy....



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