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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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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Down 25 grams

We are not displeased. We are not upset. Tomorrow we will just make sure there are lead weights in her diapers. Actually if anything she should gave lost more yesterday... Just goes to show what a fighter she is.

Pray for weight gain!



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Bayta in ballet shoes! (day 13)

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Tired but gaining! (day 13)

We gained 5 grams last night... She is feeding for longer periods every time! She also is staying alert more at each feeding. All good signs!



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Look what my brothers made me!

Grammy helped too!







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Look ma no lines!

Down to pulse ox and three stuck on sensors!!!!!






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Exhaustion sets in

Amanda is feeling better, but says her incision still hurts a bit. This worries me. If she doesnt fell better by this PM I will take her back to the Dr.

Bayta is eating well, but not eating long. She is getting all the nutrients she needs, but we both realize she may lose weight for a few more days. The literature we are seeing as well as some blog comments suggest she will lose more weight when and if the ever get her darn IV out. The surgical team must be really busy because they are over 24 hours late to get it removed. I would probably be pitching a bigger fit, but it was the IV being removed last time tha immediately preceeded the scariest day of my life. It is hard to believe that last Friday about this time things began to go bad very quickly.

The couple with Ellis in the next bed over seem to be getting good news Ellis may be coming home around the same time Bayta does. They are a truly amazing couple and we got to meet their two year old daughter last night. She is precious and dressed up as a lady bug. It was great to see her and talk to her, but I miss my boys so much. This is definitely the longest time we have been apart. We called home and got to talk to Larry who was watching the boys while Judy had gone to the store. He said that he had originally planned to leave judy there by herself but they both quickly decided that two boys equated out to a two adult job. I think that is high praise to the mother of my children.

Another nurse said that she thought we would be able to go home on Tuesday... again... she has not authority in this matter what so ever, but it is nice to hear.

I am going to be making some changes to this site today to kind of clean it up.

Opps its 4:30. Gotta wake the mom for another feeding. Amanda says "Moo"

Darick

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My first outfit (day 12)

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Lost weight :( (day 12)

Her weight dropped 30 grams... No one is concerned. She just started on the breast yesterday so 30 grams is not so bad. She is definitely doing a great job... The mechanics of the transaction are there we just need some more volume.


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Our doctors are total professionals

Have a hippity hippity day!


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Harrison dressed as anakin skywalker

Thanks Amy for the picture!!!



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CPR trained

One more item checked off our list.

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1st feed done (day 11)

We hope she took enough milk. Time will tell... There is a good chance she will lose weight for a few days then gain. She is such a sweet baby. I don't remember the boys being on such an easy schedule. Looks like my job will probably be to keep her up so she doesn't snack and then pass out.







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Going going gone

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Good burp!

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She fed for a minute and passed out

Mom says no pics. ;) will send some after feeding!


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Where we left her

She hasn't moved since last feeding!


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How I know Bayta is a lady

These two pics were taken after two different feedings.... Notice the pinky standing up in a decidely ladylike manner.





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This is page one of baytas meds

The other page is almost as long... It is amazing that our little Bayta has been exposed to so much so quickly and continues to do so well!


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Can you believe?

Where the black stitches are on the tube on the right... Everything below that tube was actually in her chest.
Hope this isn't gross... But I find it amazing!
The drain itself works like a gas siphon. You open a valve on the top of the bulb... Squeeze the bulb, close the valve and let the vac effect do it's thing. The fluid that pooled in the bulb was closely monitored for volume and color.


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Drain tube out

In this picture the small scab about two inches below where the sensor line crosses her midline scar is the only proof that she had a drain tube in her belly.




This is the drain tube that ran to her chest. I wanted to keep it as an ornament for the Christmas tree... Amanda vetoed it. Some people just have no sense of humor!




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Battle of the doctors

There are no right answers in this room. The doctors constantly debate about the best course of action for Bayta. This makes it very hard to tell people what is going on... But we know she gets a better standard of care because of the battles going on around her.

New plan:
Amanda breastfeeds in about an hour. The groin lines will remain in until we see that she is doing well and that her food and meds are staying down. The logic is that if she isn't able to keep them down then we have to put back in an iv... So why take one out just to possibly have to put it right back in tomorrow?

The groin lines make changing diapers a little difficult but that is a minor complaint if I keeps her from getting stuck again.

So now we need 24 hours of weight gain and then the conversation turns discharge. We will probably take 24 to 48 hours of no monitors to see how she and we do in an apartment setting here in the hospital. A lot of people we have talked to have said that when you get home and there are no monitors watching her to make sure she breathes... You get paranoid and can't relax.

Today we hAve a CPR meeting at 1:00 pm

Tonight at 6:30 we have a dinner with other parents of nicu babies. I am looking forward to hearing their stories.
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Update on surgery

Neo natal just did rounds. They believe the surgeons will sign off today on bayta. Someone will have to decide who will remove her tubes. Then because the tubes are gone she will have to start taking the reflux meds orally. This means she will essentially be taking pepcid and vitamin d.


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Passed out on mamas milk

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Surgery may sign off today! (day 11)

Had about a 10 ml reflux last night. So we are watching bayta like hawks today. If she continues to feed well surgery will pull her lines including the two in her groin so all she


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Tired

Sorry for so few posts today. Got to play with James the 5 yr old. Tomorrow he begins his radiation. He told his mother not to be afraid. Please pray for this mazing boy to do ok with the trials ahead of him.

Other parents on the ward

Besides Ellis's folks we don't see a lot of families on a regular basis. There are premie twins to the left of us that are both in isolation. Behind us there is another premie. We have been there 10 days and have seen their parents twice. This is not a slight to them. It is jar to be here everyday. To have a child you can not hold or touch because she is in a box... Must be incredibly difficult. Add to it a young mom and a non existent support group and it makes for a difficult situation. One of the fathers was in the other day bragging about his multiple children from different women. It again reminds me to thank my blessings. Both Amanda and I come from intact supportive families. What battles did we not have to face because of the sacrifices our parents made?


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We got a prediction on departure date

One week. That was from one of the lowest rungs of our medical team... But even if you double it or triple it it is still a date we can live with. The nurse working with bayta thinks she is sooo funny. 10 minutes before she is supposed to be fed she wakes up and starts screaming until her heart rate shoot above 200. That has the effect of setting off monitors until the nurses start her feed just for a little piece and quiet. As soon as she gets what she wants she quiets down and her pulse drops to normal. The nurse says it is behaviors like that that will get Bayta sent home sooner than later.


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Boring day (day 10)

Amanda is the source of our excitement today. She did have an infectionin her incision and she did have a uti. We got antibiotics and hopefully she will be cured by fri. Because we are in a place with a lot of resistant staph issues we created a plan to get her treated this weekend if the medicine doesn't donthe trick.

Now back at nicu things are going slow. Amanda wants to be here as much as she can to actually feed bayta with a bottle. I want to get out of Here because tomorrow her boob will be required and that means a lot more time at the hospital.

Bayta seems to be taking it all in stride she is sleeping and only waking up to feed. Although I want to pick her up and hold her we Are holding off because experience tells us to never wake a sleeping baby.

Amanda is pumping now she is having great results.
We have decided to try to have the drs pinpoint for us what other organs, if any, are in the wrong place. In case she ever has to have An appendix out we want to know where it is.

I got to talk to the father of Ellis our next bed over neighbor. He has been here for several months and we had a lot to talk about in common. Ellis is a beautiful baby and today I found out for the first time that he might have some brain issues. They don't know how bad... So they have to wait and see... I wanted to give him a hug. He unlike us had no idea he would be here. They had a normal pregnancy. They also blog: www.ellisfaron.Blogspot.com

I will ask for permission to take a pic of Ellis. He has the nursin staff wrapped around his finger.

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Getting old (day 10)

I woke up the Am with a terrible Charlie horse. Now before you guys start In on me about drinking more water and eating banannas ... I have probably been doing more of both that I have ever done in the last 10 days... Yesterday I held Bayta a lot and drank ice water the whole time.

I think I am just getting old. Sigh.


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Sad news

I found out Warren stafford passed away. The first law firm I worked at he was a pArtner. I used to love to stay late and listen to stories of his many court room battles. Turk was as blue collar as an attorney could be and I always hope to emulate him in my practice.


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The plan (day 10)

At 9:00 am she got 20 ml of breat milk every three hours from then on she will get 5 more ml until she is at two ounces. She got her crib because she is regulating heat on her nose. Central lines will come out when she reaches the two ounce target and is doin ok with it.


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Last night

A baby entered our pod. It brought back a lot of memories for me. This baby interestingly had a gastroschisis the condition we were originally diagnosed with. Dr Keller attended to her in the pod. If I was her parent I would not have been allowed to watch the procedure. Since we has been here all day watching Bayta they let us stay. The procedure required the attention of several nurses so Amanda kept bayta entertained while I played a bit with Ellis our next door neighbor. But truth be told I watched the procedure where they wrap the babies intestines in plastic and suspend them from the warmer above the crib with a very expensive paper clip. It was amazing. I wanted so bad to meet this babies parents and tell them everything Amanda and I have learned over the last 10 days. So far they haven't showed this am.
The baby seems to be doing great and they have already squeeZed over half of her intestines back Into place.



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On a big girl bed

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Amanda not feeling well

We have a drs apt back at barnes Jewish for Amanda. Her incision looks to be getting infected. Please add her to your prayers.

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James

Saw James tonight. He had gotten back from mcdonalds where mom says he ate well. Tomorrow is his lastcplay day and then his treatments start. I still couldn't get him to stop smiling. Please pray for James.


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She likes it she likes it!

Took the milk like a champ! Wanted more...
Today was a up and down day... In the end Bayta beat the odds... Actually had Something that only one in 5 million people have... And has beaten it down to a footnote. I am sorry I didn't blog sooner, but my precious iPhone ran out of juice after several hour of studying pentology of cantrell. On the way home we stopped to get some gas. I did something I never do. I bought a lottery ticket.


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Next step... eating milk (day 9)

At approximately 6:00 PM Bayta will attempt to drink breast milk. This is a huge stage... today she took the thinner pedialyte lite and did great with it. We do have some mommy and daddy concerns. After she finished she screamed for a few minutes and was pretty much not happy. We hope that is the same feeling an adult who has not eaten in a week if they had a big mac in a three minute period.

It happened every time though so we are going to be really careful and try to slow down her intake as much as we can. It is hard to do that because she inhales her bottles thus far.


There is a new addition coming to the ward tonight. We dont know who or waht, but we believe the child will come from Barnes Jewish... it is hard to think that dramas like the one we have gone through and much worse happen every day here. We are also going to try to wash Baytas hair tonight.

As always we will kepp you updated as we find out!

Darick

Back to eating like a pig

And passing out


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Met with Genetic Doctor (Day 9)

I just finished an hour long blog to you guys and I lost it. I am sorry for the delay. Trust me when I say that the last blog was very eloquent.

Natasha our nurse (who is single if anyone knows a very nice guy in St. Louis. )
Saw that we were freaked out about her diagnosis. She took it upon herself to have the Dr. come over and sit with us and answer her questions. She is a wonderful person and nurse.

So the Dr. Came over and answered our many questions. My previous blog, the lost one, went into word for word how the meeting went. Here is the nutshell.

The diagnosis does require 5 factors. The Dr is absolutely convinced based upon his examination of bayta that she has the sternal defect. He does not believe it is worth exposing her to radiation to image the minor defect. According to him knowing it is there will not change how we treat her in ANY way.

He believes the prevalence in the general population is slightly less than 1 in 5 million. He stated that he believes that many hospitals would look at Bayta's condition and not figure out what she has. He has seen 2 or 3 in his career.

The test he has ordered is a micro array. Amanda pinned him down artfully into admitting that the test will not do us any good. It will help researchers and might help bayta when it comes time for her to have a little girl of her own.
The Micro Array looks at her chromosomes on a much finer levelthan the normal genetic tests. THe micro array has only been available for a few years so Bayta will be one of the first to be studied by the Micro ARRAY.

The current belief is that this is a x chromosome issue so both families contributed equally to her genetic material. Part of his research involved a detailed study of both the Hemphill and Whitehead lines. While he was generally impressed with the Hemphill lineage he had several questionable unions identified on the whithead side. In fact he asked Amanda to come back and discuss some of her relation with him in 6 to 8 weeks when he had more time to put together a formal team.

The really cool thing he said to explain why Bayta has done so well has to do with her being a girl. Girls are simply not affected by P O C like boys. This is becasue 2 X chromosomes are passed thus allowing one to be bad and a redundant one to cover for it. In thinking back to the cases we have seen we have to agree with what he is saying. Amanda and I can think of no girls we have met on the internet. Tammy sent us an example of a "friend" of ours Aiden. He is the son of a mother who blogs about his adventures with P O C. While he has done well he is still about a year delayed and has a trach tube and still is unable to eat through the mouth. It is a scary. Aiden's story is one of the first we came across after our "O" diagnosis. And one of the reasons I decided to start this blog. Small world.

Allison Nugent got back to us with her research and it pretty much squares with the Dr.s meeting. She informed us of a study for 2 year olds and we will try to get Bayta into... but that is for another blog.

Gotta go... bayta is ready for her next feeding!

PS I might have exaggerated what the the genetisist said about the Whiteheads.

Surgery bows to Bayta

After her stomach tube has run clear and swelling has gone down, blood gasses remained stable... And xrays showed clear... Bayta got the go ahead for 15 ml of pedialite lite . It looks to be a sweet liquid thinner than


water. She guzzled it we are oN the lookout for spitup and will do this 3 more times today. If that goes well then breast milk tomorrow.


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Are you sitting down?

We were just diagnosed with pentalogy of cantrell.

My head is spinning. The surgeons disagree because they say four does not a pentology make. Dr Anna says it will be five if we took the time tonimage her chest. Apparently the genetisist diagnosed it. As a result a genetic screen is being performed. It will take three weeks to get the results ( I am still waiting on the results of the first genetic tests from last week that were only going to take a day or two!!!)

One in five million diagnosis. If memory serves.

She seems so healthy. If you happen to be a genetics expert please let me know about this latest screen. The board wants this to be the top priority of our research division. ;)




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Surgeons vs. Neonatal

Both want what is best for bayta just can't agree on what it is. The surgeons having missed a big hole in her diaphram want to make sure this recovery goes smoothly. The doctors on the nicu see her exhibiting classic "food seeking" behaviors and want her to start eating asap.

Hopefully today she will get her chance. We have had a few dirty diapers now, so all we are waiting on is the go go go signs and she will be off to the races again!



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Good morning so far (day 9)

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She did it again! (Day 8)

I am really thinking that this girl was aptly named. So far the more hardship foisted upon her the the better she does. We finally got a surgeon to remove the drain at 6:30 PM. She cried once and that was it. The Dr. put a yellow bandage over the opening and taped it down. At he same time he opened up the midline incision because 48 hours had passed since her surgery. She was fussy for a little bit and then Amanda began to sing to her and she calmed down and started making lovey dovey eyes at mommy. At the end of our visit she was gnawing on her hands. A sure sign she is looking for a meal. Unfortunately the Dr.'s now want to play the conservative game so she will not be given any milk until tomorrow AM. It is hard to leave your child hungry. Luckily Amandas singing calmed her down enough that she was actually drifting off as we left her pod. She may have started screaming bloody murder right after we left, but for that small moment in time she was quiet and I could pry her mother away from her side.

I met a five year old boy at the house I thought his name was Josh, but it is really James. Can't remember if I have talked about him on here or not. His mother took him to the Dr. for a routine test and discovered he has several brain tumors. They operated in September and got a lot of them out, but there were some that were too close to the brain stem. He will have to have Chemo soon. He is such a perfect little boy. I asked him the other day if he could stop smiling and for several minutes he tried to... but just couldnt do it. The Ronald Mc Donald House has been getting the family tickets to the zoo and even hockey games... (He liked the fighting but was pretty ambivalent about the sport.) They also make sure that while he goes to the game he gets to meet some of the players. This is a first rate organization. It has been hard to deal with an illness with Bayta. It is hard for me to believe that less than a week ago I did not even know her. Already I love her in a way that only parents can understand and I would do anything to make her happy. What would you do for your five year old child? What if there was nothing you could do?
This week we got word that another Omphalocele mother lost her baby pre term. How difficult would that have to be? She was brave enough to write to the other mothers sho are dealing with their own omphalocele children... and told them what the procedure was like so in the event it happened to them they might not be so scared.

I have literally squandered the many gifts I have been given. I do not think I have the courage of a shattered mother or even for that matter a five year old boy... and yet I call myself a man. We all live these highly sheltered lives believing that it wont happen to me or to my boy or my wife... when the reality is that it will. Maybe not today, but it will. One of the followers of this page told me they went and hugged thier child as a result of reading this blog. That was an unintended consequence of this site. I hoped to have a vehicle to talk about what we were going through and to maybe act as a guidepost for other "O" families on their journey through this diagnosis. However if it makes us even take one second to appreciate how special and fragile the loves in our lives are and how meaningless everything else is maybe Baytas Battles will have been worth it. I never want to be in a position like I was on Friday again. In a split second I would have given up my home my cars my stuff and my life and not even thought twice about it just to have my precious daughter safely in her mothers hands again. I have never been that helpless and scared in my life.

I have had a few people tell me that this happens for a reason. That God has chosen Amanda and I for a reason. Because we are strong. To accept that is to accept the premise that the children that are taken are done so because their parents are weak. I know it is meant well from the people who say such things, but this is something I can not accept.

In the group that is reading this blog I know that there are people who believe in God because of the overwhelming proof of his existence and those that reject him looking at the exact same facts. I have through my life been on both sides. I thought when I was younger I would have the questions of Gods purposes completely worked out by the time I reached the ripe old age of 30 much less 35. I admit categorically I have yet to figure it out. All I know is that a five year old with a smile on his face is the closest I have come to seeing the face of God... and I think the trick to getting through this crazy mixed up world is figuring a way to focus on being more James Like and less like ourselves. Like it or not we all have a date coming up that will be here before you know it. You can spend those days watching tv or living. I believe my God will prefer the Darick that has lived like he had an inoperable tumor than the one who has made himself so comfortable that he can not feel the pain in his life much less the lives of the James in his neighborhood.

As bad as this experience has been for my family... I am now in anenvironemnt where I am the lucky one. I hope you know how lucky you are. Life is so precious lets all go out there tomorrow and make it better for the James of the world.

Sorry... to go so far off topic... it has been eating at me for a while.

Goodnight.

Bayta battles another tube and wins! (DAY 8)

Today after we got back from a meeting to learn that we should never shake a baby (even if they deserve it or ask for it... sorry Jackson) We also learned smoking is bad and and babies should sleep on their backs. I wish I would have known all this when I was a prosecutor it would have made things easier for me. I have half a mind to write a letter to my old boss and set her straight. ;)

Well, we got back from that meeting and Bayta got her IV out. Still no word on the chest drain tube. We are waiting on a surgeon to perform the removal which is a pretty simple one. She has been completely dropped from pain meds, but she will have to get a dose of something when they remove that tube... to me it would have been nice to remove it before she got off the meds... but surgeons are busy people and sometimes things happen to keep them from doing simple procedures like this.

So for now there are no tubes in her mouth or wrists or feet. She still has her multiple lines coming out of her groin. She also will have to get the smaller feeding tube put back in her mouth if she does not take to breastfeeding right away. Her feeds will start with 5 ml and then be upped by 5 ml each day or so until she is taking 2 + ounces without significant reflux. She seems to still have the suck relex going... but she was not really getting too involved with the breast before the second surgery... so we will have to see how it goes.

Amanda continues to do very well, despite the soreness at her incision. It really isnt funny but when she laughs it hurts her so she laughs winces... and then realizes how silly it looks and does it again... sometimes for minutes at a time. One thing is for sure she is as beautiful as ever.

We are hoping to get the boys up here this weekend. We miss them so much it hurts.

We also want to continue thanking you for your thoughts and prayers it is nice to hear from all of you... even if we are unable to respond to all emails we read everyone and get a lot of comfort from them. In particular I wanted to think my GREAT AUNT ELIZABETH for taking the time to read and write to our blog. Very impressive.

Also a question was sent to us to define what a VSD is. I believe it was defined earlier in the blog, but it is a Ventricular Septal Defect. It means that a small hole existed in the heart. Many "normal" babies have these holes and they are never detected. Because of Bayta's condition we have so many ultrasounds of her little heart that we found a very very small one. It appears to already be healed (the last ultrasound does not show it.)

A VSD is one of the 5 prerequisites for a diagnosis of pentology of Cantrell.

Special thanks to Allison Nugent for opening up the National Institute of Health's databases to us for awesome medical research. The Board of Directors for this blog have voted and she is now our Offical Researcher at Baytasbattles.blogspot.com

Rumor has it she is not going to quit her day job. It is also interesting to note that Allison went with Amanda and I on one of our first "non dates" during college... and the fact that she still talks to me is greatly appreciated.

;)

Pray for poop x2

Ok, got the vac tube out of her belly. Still waiting on the surgeon to remove the chest tube drain then I will try to take some family friendly pictures...

They will also try to get rid of the wrist iv and consolidate the it with the main lines ... But that is the step we got to right before black Friday.

This is her wrist iv



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