Children's Dallas Visit

>> Friday, April 3, 2009

We are so happy that Baby Kaden arrived this morning at 6:05 and is stable right now at UCSF. It sounds like Kristi is doing well and recovering. You can follow their story by clicking on the link "Our CDH Journey with Baby Kaden". Please continue to pray for this family and for Baby Kaden as they begin the fight to overcome his CDH condition.

The visit today at Children's Dallas went really well. The format of the consult was much better than we experienced in Houston. We started off with a tour of the NICU and L&D and as we expected, the facilities are not quite as good as we would like. It's just not a real family friendly environment and the space in the NICU is pretty tight with no privacy at all. The hospital is pretty old so all of that is to be expected. While the facility itself is not what we would have chosen, we could tell the Doctors and Nurses were outstanding. We met so many wonderful people who were sincerely interested in answering our questions and really took time to help us visualize what our experience would be like. Honestly, the part that really hit me was seeing an ECMO machine in use on a baby. I don't think I was ready for that, but know I needed to see it to get prepared for this possibility.

After the tour we had our meeting with the entire team. We really liked the format of having everyone in the room (Neonatology, MFM, Pediatric Surgeon, Radiologist, Resuscitation team, NICU nurses, etc) and everyone able to get on the same page. It was pretty impressive to have more than 10 extremly important healthcare professionals in the room at one time to talk about our case. We started off looking at the MRI images on the projection screen and talking about where the organs were located. The biggest surprise was that the radiologist didn't necessarily agree that the liver was up. This was huge news for us. We still don't know for sure, but it looks very promising that the liver is down and even if it is up it must be a really small amount. I feel like there is evidence that this can correlate to outcome so we were very excited about the news. The images themselves were less than ideal so we discussed possibly doing another one at 34 weeks. We will make that decision in the next few weeks.

Everyone in the room took so much time with us explaining what would happen and what they anticipated with our case. It really was a great experience and we now know that Dallas is where we are supposed to deliver. We were so thankful to have Dr. Zaretsky there with us and to our surprise, Dr. Savani was able to catch a flight back from Canada in time for the meeting. These two keep us grounded and their presence makes this situation so much more bearable. I doubt they will ever understand how much they have done for us, but we would truly be lost without them.

Overall, the team was optimistic about the outcome of this case and we feel confident in putting Kamryn in their care. Feels great to get that decision behind us and can turn our attention to other things.

Stephanie has her shower tomorrow so her mom and sister are in town along with one of her best friends Jackie. Tomorrow and Sunday I will be at the Nascar race with Scott and Matt so we both have something to keep us distracted and allow us to unwind a little bit.

Thanks again to everyone for all of the continued support and prayers. All of you continue to keep us uplifted and hopeful. Thank you!

Shawn and Stephanie

5 comments:

Maxton's Mommy April 4, 2009 at 1:00 AM  

Sounds good to me!!! :-) Glad your appts. went well and sounds like everyone is on the right page. I will be continuing to pray for you guys as your time gets closer.
Ash

Tracy Meats April 4, 2009 at 10:59 AM  

What a great day at Dallas--it really sounds like the staff at Dallas is on top of things and are ready to save Kamryn's life! Enjoy your weekend at the race and I hope Stephanie and Hollie have a great baby shower today. Praying for Kamryn and Brooke and your entire family. Continue to stay positive and strong for your girls!

Hugs, Tracy - Ian's mom

Irvin family April 4, 2009 at 3:59 PM  

Hey Guys, sounds like great news.
Positive thinking and prayer make all the difference. When we had to decide where to deliver Oakley we prayed that God would lead us. We would not change anything about our decisions.

Remember GOD is good and he is in the Miracle bisiness.

Love Sheree (Oakley's mom)

theparkerreesefoundation April 7, 2009 at 7:58 AM  

We are always lifting y'all up in prayer and if you need anything we are here for y'all.

Anonymous April 7, 2009 at 4:25 PM  

Glad that things went well at Dallas! Hang in there, guys, I am rooting for you :) (I hope you guys score some good gifts at the shower ;) )

Lotusflower (IVFC)

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