Wednesday, September 30, 2009

3rd to Last Springfield exam (18 days to bayta)

She is gonna be a big girl 6lbs 8 oz already!!! She is breach but with a c section no big deal. Her head measures 40 weeks which worries us, but dr Fraser says no worries. (one of the nasty syndromes associated with O babies is called beckwith-weideman and generally it creates large heads) Babies typically grow 1/2 lb a week in the last weeks of pregnancy.

Amanda is about to be examined by dr litherland (the boys call her wifferland) We are going to try to bribe her with chocolates to go with us to st louis... If she says no Amanda says it is discretionary if I want to hit her over the head and kidnap her. Seriously she has delivered both of our boys and we trust her so much. She was one of the hardest parts of our decision not to stay in Springfield.

-- Post From My iPhone

Tuesday, September 29, 2009

Here is a picture of how Amanda feels!

-- Post From My iPhone

Thank you Adam

Adam found an app for me called blogpress! It makes the link between my iPhone and blogspot automatic... He has helped me with many iPhone issues before... If you like the pictures it is his doing!

-- Post From My iPhone

Another photo test

Harrison and Jackson at the magic house...

-- Post From My iPhone

Another picture test

Sent from my iPhone

Thanks Tammy and Judy

Tammy informed me that some of our links to Omphalocele info were broken. I updated that part with links to some families that have just gone through and are currently living with the aftermath of an "O" baby. A few of the sites have some very graphic birth photos... but they give a very real image of what the Omphalocele looks like.

My mother in law also pointed out that I really need to read what I post before I post it... While I agree with her, the reality is that it wont always happen. Please don't hate me for it... but if I wait until I have proofed the document I dont think I will ever get it up. I will go back and proof from time to time.... maybe I will even give Judy an "editors" access so she can go through and fix my typos and poor grammar...

Tweaking the blog (20 days till Bayta)

My mother in law says she is not getting notification when I the blog gets updated... today I should have fixed this. Also I added a handful of family and friends to receive a notice on the blog when I update so if that gets annoying let me know...

Tweaking when I was in the prosecutors office was a term used to describe the constant fidgeting done my meth addicts as they are coming down off a fix. The cant sit still and they cant hold on to a thought for more than a few seconds... seemed like a pretty good way to describe me. Last night while I was up I worked on thank you notes and letters and Medical authorizations for my in laws. It was productive time but I payed the price for it yesterday.

I have been seeing a personal trainer for a few months and he has been really kincking my butt 2 times a week. I hate going, but the differences in my overall health are very noticeable and generally I am glad when I get done. That added on to very little sleep and I was a very tired boy.

Yesterday I got a call from Thor (my pilot friend) asking me to pick him up at the Springfield Airport. His wife has just been diagnosed with MS and is banned from driving until she gets her condition figured out.

I know from all the emails and letters that I receive that a lot of people are praying for us... you have no idea how comforting that is to Amanda and I. This week though if you dont mind please pray for Tom Harvey's family (Tom passed away last week and also pray for Thor and his wife.)

Monday, September 28, 2009

Can't Sleep (21 days till Bayta)

It seems as B day get closer I am geting more and more manic. I am reading all the time. It feels like I have exhausted all "medical" texts so I am starting to read other peoples blogs who have gone through this. One of the changes it has made is that I will now include the days till birth and the days after birth in all my headings. (Makes it a lot easier to see progress.) Amanda is exhausted. like any normal pregnancy she hurts and has trouble finding any comfortable position in which to rest. Bayta being bigger than our other two children doesn't help either. It is hard to watch her struggle to get everything done when she is in pain.

I enjoy writing to this blog... it seems to help me keep my thoughts in order. I hope that someday it provides comfort to another family who is going through the same things we are. I plan on showing and talking about nearly every issue Amanda will let me. Some of the pictures will be graphic and will be labeled accordingly. I still need to get a program to lower the resolution of my iphone so that my pictures will post to this blog.

Amanda is really scared about the C section. It does not help that the OB doing it will probably be a complete stranger. On Friday in St. Louis she was told when we checked in that the doctor would be checking her internally. She had no idea if it was going to be a boy or a girl doctor (she prefers girls) and was very uncomfortable. She has told me several times that she is glad we are in St. Louis (something I really pushed for early on) but it feels pretty when the decision causes her discomfort.

We got to meet Tiffany Morris in person at the hospital. She is one of the first MOO's (Mothers Of Omphaloceles) that actually called me... to tell me everything would be ok and to offer support and counsel. She is an amazing person who has a beautiful little girl who has trhived despite having this condition. Tiffany lives in Arkansas and drives her baby all the way to St. Louis just to get care. She introduced us to Dr. Warner the Dr. we hope will be preforming surgery on Bayta. It just happened that we were all at Barnes on Friday so she came and sat with us. Amanda and I missed out because we had an appointment but she stayed and talked to my parents who came up to get a "lay of the land." She had a six hour drive with a two year old and she waited patiently for us to finish our appointment. So much of our situation has been negative... but Tiffany has really been one who puts our faith back in the kindness of people. Amanda and I both hope to help be Sherpa's for others who are making this journey.

We also had a bit of fun. We stopped at the Magic House in St. Louis. The boys both had a wonderful time and it was totally worth not getting home until midnight. Amanda and the boys slept in the car. The whole time I thought... "who in the world made me responsible for this lot?" It is an awesome responsibility being a father... I hope when I am done that the boys judge me worthy... my father and mother were spot on perfect at parenting... I hope I am half as good.

The other thing that happened to me again at Barnes Childrens hospital is that on the way outwe passed a boy who was on an oversized tricycle (clearly his mian means of motivation) followed by a gaggle of parents and family... I live in such a sheltered world that I have no idea what condition he had. even with the cycle his motions were somewhat jerky and his head had been shaved and he had what appeared to be occular implants coming out of his scull to his ears... What really registered to me is that despite all that he was going through there was a smile on his face like he had just won the lottery. No offense Pastor Bruce, but sometimes God drops me a sermon that hits me right between the eyes... that was one of those moments. Hug your kids and people who you care about and smile... because we are all truly blessed.

Friday, September 25, 2009

The weigh in!

Bayta was weighed in (via ultrasound) 6lbs 4 oz... Bayta will be our
biggest baby yet....

Sent from my iPhone

Harrison hacking network

While mom awaits ultrasound results...

Sent from my iPhone

Thursday, September 24, 2009

Tom Harvey Passed Away

Tom was an employee of General Rental for a long time. He was our delivery driver and general fixit guy. He will be missed. He died during his second battle with cancer. He was being treated in St. Louis and we joked about seeing him there when he was leaving and we were coming in. It seems impossible that he could be gone. Make sure everyone who matters to you knows how much they mean to you... sometimes you dont get a chance to tell them...

Wednesday, September 23, 2009

"Vague and Contingent"

I was talking to Amy Mancuso a gal I went to SMSU with who was an Resident Assistant. She found me on Facebook... I am glad she did she was always a nice person who I wondered what happened to. She was sarcastic and very smart as I recall. Anyway I was telling her that we dont really know what is going on and that for right now our prognosis was "vague and contingent" that seems to be a great way of describing this year.

Amanda and I went to see Dr. Frazier's office for a stress test and ultrasound. Everything is fine. Amanda feels full as a tick and has not been sleeping well. The other night she got kicked by Bayta (who apparently has no problems with lower body development.) and went from laying down to sitting up instantly. Then she has to try to fall asleep all over again.

Right now we are trying to get the house in an order of some kind... but it is slow going. We got a bedroom set for Amanda so for the first time since we have been married we actually have grownup furniture that we bought. (Judy and Larry have effectively decorated our house with their hand me downs.) Now we are just waiting on Amanda to pick out a mattress... so until then we are "camping out" in the basement.

Last night I got a computer desk thanks to our friends Brian and Mark who helped us move it into the house. It looks really great, but was so heavy we have pretty much decided to sell it with the house when we move.

Friday we head to St. Louis for our last prenatal check. We are gonna be armed with a long list of questions from breastfeeding to survivability... Harold and Allena will meet us there and the boys will be there also... should be a long day... We are hoping to meet Tiffany our Fairy 'O' Mother there as well.

Tuesday, September 22, 2009

Now... Can I send pics?

Sent from my iPhone

This is a test of my mobile blog

I am trying to blog from my iPhone.
This should make it easier to update in the nicu.

Sent from my iPhone

Way to go guys...

You made Amanda cry.

You know who you are. She is delicate and fragile and just when she couldn't take another moment of abuse... there you were.

TO the people who have offered to prepare meals for the boys and their grandparents while we are away in St. Louis... all I can say is thanks. You literally took away one of the many things we have been working on. In the last few months it seems like nothing much as been going our way... and then you went and did something so kind and generous and unexpected that there is no way to pay you back but to say thank you!

Darick, Amanda the Boys and Bayta

Saturday, September 19, 2009

30 days and counting!

I think I am begining to lose it. I feel like the computer from War Games (that old movie from the early 80's) I close my eyes and I am constantly playing wargames. What if we have surgery asap. What if our lungs are too weak. What if there was a mixup at the lab and... you can do it all day and in the end there is no plan or scheme or device that gets us an answer. 30 to 60 days is a ball park average for being in the NICU. A "internet" friend of ours was out in 7 weeks. Her defect looks very much like what I am seeing on the ultrasound... but there is no way that it is similar enough to extrapolate any meaningful information. Then she had some complications that hopefully we will be able to avoid because (more or less) the doctors failed to put a simple compression on the defect so it got bigger and required more of a fix. [The childs mother is Tiffany and she was one of the first people to reach out from the internet and guide us... when I think of her I picture angels wings and a full halo. She calmed me down. Her daughter is also beautiful and could easily be a child model... if I hadnt seen pictures of the defect (which Tiffany was so nice to share with us total strangers and voyeurs in her world ...) I would never have guessed she had the "O" at all.]

(Good example of my racing thoughts there... Had to go back and add brackets just so I could understand that one.)

Any way. Tiffany wanted nothing but the best for her daughter. She trusted the Doctors (because what other choice do we have?) and still had to finally make the decision to cart her off 6 hours away from home to Barnes in St. Louis to get a better result for her daughter... My biggest fear is that when it comes time to make the hard decisions I will be able to and won't spend the rest of my life second guessing those decisions. Ok maybe that isn't true... my biggest fear is making a decision and Bayta having a decreased life because of it.


Saturday, September 12, 2009

Technical difficulties

I have to admit... this is my first blog. I really didnt know what to expect as I made it. I guess I was looking for an easy way to inform people what we are doing so I didn't have to constantly send out emails. Put it another way I was being lazy. But unfortunately I didnt communicate to everyone that in order for them to get the update on the blog they have to follow it. SO Now I am chatting with an audience of 6. No problem... I like at least 5 of you... (sorry Heather.) ;)

I am going to try to send out an email to the now 600 people who emailed condolences to us... that they need to sign up as a follower... ( I dislike that term).

If you know of anyone who should be on the list Please let them know to set up as a follower. My mother in law suggested it was to hard to sign up as a follower so I moved it to the top of the blog... any other ideas let me know...


My Mother in Law

Some people don't like their mother in laws. I won the lottery. The bad thing is I think she doesn't realize how much I appreciate all she does for our family. Amanda and I literally bought clothes for our two year old and our four year old for the first time last month. Judy bought everything else. When se showed up to visit us this weekend she had several bushel baskets of cloths for little Bayta Sophia... and even some cool bowboy boots for the boys... The boys honestly believe that she hung the moon. When Judy comes to visit Amanda gets to experience what it is like to be a distant second. They call her Grammy and I sometimes wonder if we dropped them off at Grammy's house if we would ever be missed? When Amanda and I head off to St. Louis Grammy has agreed to put her life on hold and watch the boys for an unspecified amount of time while we figure out Bayta's care. Politically she is a little screwed up... but I think I am learning to overlook it.

Neat blog from another mother of an omphalacele (MOO)

This is a mother from Amanda's support group. It does a good job of showing some of the many detours we will possibly face in our journey. It kills me to think of Bayta in the hospital for a year....