Wednesday, October 10, 2012


Tonight's post is not witty nor funny and probably not very entertaining. It is just an update on our travels and our journey!

Today was an absolutely beautiful day, in more ways than just the weather. Kelsea and I went down to St. Louis last night because we had an 8 a.m. appointment at Barnes-Jewish and thought it would be nice to not have to leave at 5 in the morning to drive down!

The night started off with a wondeful meal at the Cheesecake Factory. I have never been there, but how can you go wrong with a name like that. The best part was taking 15 minutes to decide on what I would have for dessert. I was completely overwhelmed by the 30+ choices!

Our hotel room was extremely nice. The St. Louis Galleria Residence Inn by Marriott (which has been recently renovated) was well worth the $50 price we got it for on Priceline! The only negative side of the room was that we faced I-170, so it was a bit noisy. However, neither of us had trouble falling asleep!

We were excited for today because it meant we were able to take the next step on this journey that God has placed before us. The hardest part the past few weeks has been some of the unknowns. Well, today, several of those were answered. We started the day off (actaully all of our appointments were in one office) in the Center for Advanced Medicine in Barnes-Jewish hospital. We knew we would go through the same steps as we did at St. John's in Springfield, but were exactly sure what to expect. Ms. Hoskins was called back around 8:15 and I was introduced as the "father!" We first met with the Genetic Counselor, Erin, who was fabulous. I don't know what training/education a Genetic Counselor goes through, but she didn't look like she was more than a year out of college! It felt kind of weird to have somebody, who at least looked like they were quite a bit younger than me, giving me advice. However, she made Kelsea and I both extremely comfortable and talked to us on such a personal level. We definitely felt like she cared about us and Hayden and she was going to do everything in her power to ensure our doctors, as well as us, are as informed as possible. After going through a much more extensive family medical background than we did in Springfield and creating a family tree that covered the entire paper, and even after giving some medical advice for extended family members that I will pass on later, she took us back to the waiting room around 9:15.

Shortly after, Kim (who I believe is an Ultrasound Technician) and a 2nd year OB-GYN Resident (don't remember her name) who was learning how to use the Ultrasound machine (The Fetal Care Center is afilliated with Washington University) took us back to the ultrasound room. Both of these ladies were great as well. Kelsea had been filled-in on Kim by a friend who is familiar with her work and Kim was "warned" to watch out for us!

They walked us through the images and the measurements. Reconfirmed Hayden was going to get to keep his name boy showing us his boy parts again! She told us that he is in the 11th percentile based on his measurements and projected weight of 1 pound. However, this does not account for the Omphalocele and the organs that are contained in the Ompahlocele. A Maternal Fetal Medicine Specialist (MFM) came in and reviewed the ultrasound and took measurements of his own. For a few minutes, we did start to worry a little because he wasn't saying anything and when he would talk to Kim, he was whispering. However, once he was done, he told us he is a quiet talker and that eased some of our anxiety. We have had too many "quiet" ultrasounds!

After talking to Dr. Longman for a few minutes, he did tell us that the intestines, the liver, and part of the stomach is contained in the Omphalocele, which means it is a Large Omphalocele, just as Dr. Kagumba's office and Springfield had believed. Some positives from the ultrasound today show that Hayden does NOT have "sandal foot" and the measurements/pictures show very good signs that he does not have any of the three major chromosomal defects. However, as with everything else, it is only a picture and not 100% accurate. He then discussed possible heart defects. Springfield had noted that Hayden's heart was not positioned where most hearts should be and felt that CDH could be a possibility. CDH is anther disorder in which there is a hernia in the diaphragm which allows organs into the chest cavity. A local couple that I have known for a very long time had a son Cadan, who fought this for almost two weeks before being called home by God.

However, Dr. Longman, the MFM who looked at the ultrasound, doesn't believe this to be the case. However, as with everything else, things can change and we will be going back in 4 weeks for more ultrasounds, a fetal echo, and possible MRI.
After we left the ultrasound room at 10:45, we then met with the next MFM (Dr. Shanks) and the nurse from the Fetal Care Center of St. Louis who is going to be in charge of every step we make from here on out. I cannot even begin to explain what Dr. Shanks and Shannon did for us in the first 120 seconds of being in this next office. I have mentioned how everyone has been amazing so far, but these two were beyond amazing. They put every single fear Kelsea and I had to rest. He answered 7 of my 8 questions in the first two minutes, before I even had a chance to ask questions! It was sitting in this office, that I fianlly felt relief. His goal: Get us to 39 weeks and deliver (literally) to the neonatal team the biggest and healthiest boy possible!
We finally left his office around 11:45 armed with so much information. We discussed outcomes, delivery options, scenarios if Kelsea doesn't make it to 39 weeks and Hayden decides he's had enough of her and is ready for a bigger room, helicopter rides, etc.... Our minds were spinning, but they were spinning positive thoughts and big smiles!
We will go to Children's in St. Louis in four weeks for the Fetal Echo, then will meet with Pediatric Cardiologist to discuss results, and then meet with the Neonatologist and Pediatric Surgeon(s) to discuss plans for after Hayden joins us! We will continue to have doctor appointments with Kagumba here in town on the weeks in between our St. Louis visits.
It was so neat to see how caring everyone was and just to take in the sights and sounds of a place it seems we will become very familiar with. Even with our pain and sadness we have faced the past few weeks, we were reminded today on our way out that there is a reason God puts certain people in these situations. Seeing all the people around us, coming in and out of the elevators, doors, offices, parking garages, we were reminded that this is only a mountain and that there are many others around us who are dealing with just as difficult, if not more difficult situations. We are thankful that we have God on our side and continue to pray for those who do not that they will open their arms and their heart to Him.
We also decided to have a little fun on our way home and stop by the zoo. Kelsea thought that since we were only a few blocks away, it would be a good idea for "mummy' to take Hayden to the zoo for the first time!
 (I know....VERY cheesy!!). The Sea Lion exhibit is awesome! I think we could've stayed there for several hours watching them. Thanks Matt!

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