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!

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…

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!

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. 

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….

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.

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…

Boy, my cat loves me!  Yes, this is Macy.  She sleeps with me EVERY night.

Today we made our flight, hotel and car rental arrangements for visiting Florida. 

Thankfully, Southwest had a great deal online.  For both of us, it was only $435 total.  We are scheduled to fly on Thurs, May 31st and drive from Orlando to Gainesville (about a 2 hour drive).  On Friday, June 1st, we meet with the OBGYN and pediatric surgeon as well as tour the hospital.  On Saturday, June 2nd, we are going to spend the day researching housing options.  We return to Denver on Sunday, June 3rd.

I’m excited and anxious to visit and have confirmation that this is where we will deliver our baby girl.