Posted (jooosh) in All Posts on May-31-2007

Tina and I were up early this morning, 4:30 to catch a 7:30am flight out to Florida. At this point I’m feeling 95% sure about Dr. Kays being our baby girl’s best hope. It would take some major red flag to change my mind. The flight was uneventful which is good for any flight. Having an iPod loaded with pod casts and music helped the time pass faster then expected.

We arrived around 3pm and called some college* friends, the Boemler-Wareings, to see if they were around. Turns out that Laura was on her way to Disney World with the kids. She switched up her plans though and got us all passes into Universal Studios (Doug’s place of employment).

It wasn’t too hot that day, which is only really saying it was a little less then 90 degrees out. Tina and I enjoyed hanging out with Laura, Alli, and Kaylee. We met up with Doug for dinner at a restaurant in the park. We filled them in on the details at this time. We weren’t sure we would have time to hang out, but I’m glad we made the time to because we enjoyed seeing our friends again.

Talking to them made me realize how much I do miss being geographically close to friends and family. Their response to us was so loving and supportive. It gives me great comfort to know that we will only be a two-hour drive away from them during our extended stay in Gainesville.

After dinner we started the drive up to Gainesville. We arrived at the hotel around 10:30pm. Totally exhausted from being up so early and the emotions of the day, all we wanted to do was dive into bed.

Taking out the key, Tina attempts to open the door to our room, but with no success. She tries multiple times, and still, no go. Thinking I possess some magical power that she doesn’t, I request the key and give it a go. Only when a voice from inside the room says huskily “I THINK YOU HAVE THE WRONG ROOM” do we decide to call the front desk. Turns out they wrote down the wrong room number. Ok…let’s move on to our room so we can get to bed.

Ah, the key works, but…oh…um…yeah…the room kinda looks like it did in the online pics, but just don’t look too close. Maybe we want to keep our shoes on. Alright, just look past it, and move on.

We go to shut the curtains on the slider to the “patio” and witness something you would only expect to see in some kind of movie effect. So many mosquitoes on the glass it was hard to see outside. Well, let just close that up and go to bed.

Ahh, not so fast. It’s always a safe bet to be wary of the comforter of any hotel room, but, when I turn down the bed I expect clean sheets. Well, that was a little too much to ask for I guess. Yeah, nice bodly-fluid-esqe brown spot right in the middle of the sheets. Bleh.

A call down to the front desk earns us a visit from an intoxicated maintenance guy who offers to change the sheets. I’m not sure what language he was speaking either, some form of English drunken-eze, but he did his best to get the bed made, something I don’t think he normally does.

At this time I’m committed to not staying in this place another night and I’d be willing to empty our bank account to do so. Fortunately I am married to a woman with amazing skills and she books us a night in the Hilton for tomorrow.

Finally, off to sleep…

*By college I mean the place Tina received a degree from and the place I made friends, geek’d out ‘till all hours playing Bolo, and grew deeper in my understanding of “Monty Python and the Holy Grail”.

Posted (Tina) in All Posts on May-30-2007

The morning started with some lovely orange liquid. Yummm…NOT! It was time for glucose screening to make sure that gestational diabetes was not present. I drank the bottle of liquid and went to Dr. Vargas to have blood drawn. Once again, they told me that no news was good news. Hopefully, we don’t have that to deal with too! We shall see…

From there, I met with Dr. Galan for the 2nd time…it was very cute. The ultrasound technician began the ultrasound and located her head to begin taking measurements. The nurse walked in with some questions, looked at the screen, and noted, “Wow, she has lots of hair!” I was not even aware that you could see hair on an ultrasound, but apparently you can. This is definitely Josh’s genes kicking in on this one…(smile).

The appointment was not much different than anything else we had heard up to this point. All pregnancy signs looked normal…he confirmed the same LHR of .8. He did state that he was very curious about our upcoming appointment in Florida. I got the sense from his questions that he was skeptical about Dr. Kays survival rates as well as overall quality of life once the baby was born. Although nice and polite, you can just tell that he is very skeptical.

Part of me would love nothing more than to come back months later with a baby girl in my arms, to his complete surprise….one that is breathing on her own with no major brain defects. Yes, I am still holding true that she will be my miracle girl. Heck, she is my miracle girl either way…I didn’t even think I could get pregnant!

Posted (Tina) in All Posts on May-29-2007

I just think it is interesting….I prayed for wisdom and for God to make it very evident to us where we should go and deliver this baby.  Up until now, I have reached out 3 times to the hospital in Phildelphia, which is the only other one that we seriously considered.  And to date, I have not heard anything from anyone at the hospital.  Do you think that is a clear sign?

I’m getting anxious to go check out Florida…

Posted (Tina) in All Posts on May-27-2007

So, we are going to visit the doctors and hospitals for the first time this week. Dr. Richards is the OBGYN and Dr. David Kays is the pediatric surgeon at Shands Hospital in Gainesville, FL. We are praying for wisdom and guidance, that God would provide confirmation that this is the right place to deliver our baby girl and give her the best chance at life. We will be visiting from Thursday, May 31st and returning on Sunday, June 3rd.

Also, we have a test on Wednesday, May 30th with Dr. Vargas to make sure that gestational diabetes is not present. The same day, we will be visiting Dr. Henry Galan for another ultrasound to check on our baby girl and track her development. More updates to come!

Posted (jooosh) in All Posts on May-26-2007

Yes, we are finally getting around to creating a blog for our baby girl. This way, all of you can keep up on the latest happenings with the West baby girl.

Feel free to browse around, learn more about her condition, check out the latest pics and videos, and post comments.

Thanks for your thoughts and prayers!

Posted (Tina) in All Posts on May-25-2007

So, Dr. Vargas was not in the office again – – it seems like it has been ages since I have seen her.  The last time was at 13 weeks.  Anyway, I was set up to visit Dr. Torres for simple, routine check up. 

I found out that I have gained a total of 12 pounds during my pregnancy.  Not too bad…

I have to return on the morning of Wed, May 30th to have blood drawn – – they are going to check for gestational diabetes. 

Posted (Tina) in All Posts on May-25-2007

Well, since the last time I posted anything about Philadelphia, I wrote in for a free DVD copy of their incredible video about Managing the Complexities of CDH. It is such a great video presentation and their site clearly states that it is available and free to medical personnel as well as expecting parents. I wrote in with my request on April 27th and provided my address and all my contact information. No one ever responded back.

So, today I decided to call the 800 number on the website. I explained what I wanted (info on the CDH program as well as the free DVD presentation). The lady that answered the phone stated that she would not be able to help me, but would take a message for me. We’ll see….

Posted (Tina) in All Posts on May-18-2007

Although we had already gone for one fetal echo, this was the cardiologist that Dr. Henry Galan recommended. We were not expecting different news, but it would be good to get a second opinion on her heart.

We met with Dr. Adel Younoszai at the Chidren’s Hospital. He was fantastic – – very educated and thorough. He was able to recognize way more detail than the prior pediatric cardiologist.

He confirmed that “the heart was shifted into the right chest due to a large left CDH with a leftward apex. Normal segmental cardiac anatomy. There is some mild discrepancy in ventricular size (right> left) however the left ventricle is apex forming with normal inflow and outlet. The aortic arch is somewhat tortuous due to the cardiac position and there is mild narrowing at the isthmus with some persistent forward flow. There is discrepancy in the branch pulmonary artery anatomy with a slightly smaller left than right pulmonary artery (2.2mm vs 1.5mm). Normal atrio-ventricular synchrony.”

I left feeling good — he confirmed that she had no other abnormalities related to her heart.

At this point, it was confirmed: she has an isolated, severe, left sided diaphragmatic hernia (literally the entire left side of her diaphragm is missing), but she has no other abnormalities noted. This is good news – – she will have enough to overcome as it is, without having other abnormalities to complicate her prognosis.

Posted (Tina) in All Posts on May-14-2007

Posted (Tina) in All Posts on May-11-2007

Today, we went to see Dr. Hobbins. He was a really sweet man with a great disposition. Once again, Dr. Henry Galan and his network of doctors were proving to be more educated and much more tactful with us, considering the circumstances.

Interestingly enough, he began by asking us about what we knew about CDH and what where we were in the process. We expressed that we were aware the case is severe and that we were not interested in in-utero surgery. Our plan was to carry full term and go to Gainesville, FL to deliver the baby, based on the expertise and survival rate being noted by Dr. David Kays at Shands at the University of Florida.

As soon as Dr. Hobbins realized that we were not interested in in-utero surgery, he relaxed a bit and decided to open up. He confirmed that he thought that was a good decision. He noted that it is still very experimental, that the effects can be detrimental to the mother and that often times, these programs inflate their numbers, so that they can get candidates. It was good to hear this from a 70-year old doctor, someone who was immersed in the industry. He did find it a bit odd that he had never heard of Dr. Kays…

Once he finished the ultrasound, these were the findings noted on his report:

Abnormal findings were localized to the fetal chest:
1. A large diaphragmatic hernia was noted through which a protruding stomach, small bowel and some liver.
2. The heart was markedly deviated to the right, compressing the right lung.
3. The head circumference to lung area ratio was .81
4. By VOCAL methodology, the right lung volume was 6.4 mm3, which is between 2.5 and the fifth percentile.

I have indicated to this nice couple that today’s ultrasound evaluation speaks for a rather gloomy prognosis for this fetus. They have researched the available information on the Internet and seemed to be leaning towards a delivery in Florida, but are not interested in intrauterine surgery for this serious condition. They are also not considering termination of the pregnancy. I told them that if they need any other help, we would be available to them at a moments notice. We were saddened to pass this very bad news to this couple.

At the end of the meeting, you could tell that Dr. Hobbins had a heavy heart. He apologized, said it was just extremely bad luck and gave us a hug. He also asked about out insurance, to which I replied that it is pretty good, but I wasn’t sure. He made a comment which indicated that this was a freebie – – he wasn’t going to even submit it.

I left feeling sad…I knew we were taking the path and proceeding as we should, so that we hear the most opinions and have the most information about her condition. But every doctor in Denver was so grim about the prognosis. I know it is very serious and that she might not make it. I just wanted to hear from someone locally that it was admirable that we were fighting for her life and trying to give her a chance. No medical professionals in the Mile High City felt that way. They looked at us, feeling sad, but thought we were just being unrealistic with optimism.

This is why we need to go to Florida…