Thursday, August 4, 2011

One week

Hi Friends,

It has been one week since we met with the specialist that confirmed Jude's CDH diagnosis. In some ways it seems like forever ago and in other ways it feels like we just found out.

It has been an exhausting and uplifting journey for us. Exhausting because we continue to feel overwhelmed by the diagnosis and what it might mean for Jude. Uplifting because we feel confident that the Lord is carrying Jude and our family and we are certain that he has already confidently and lovingly planned all of our steps for the coming months (and years!).

We have had our share of "up" and "down" days. Some days we feel consumed by our grief and our fears for Jude and his health and on other days we feel certain of God's goodness and ability to carry us through this. Please continue to pray for us each day. We know that the Lord is hearing your prayers and that He is sustaining us always.

A few of you have asked us some questions about CDH and I found a web page that can answer a few of your questions. This website is provided by CHERUBS - The Association of Congenital Diaphragmatic Hernia Research, Awareness and Support and you can find it HERE.  

I wanted to start a new regular posting on our blog which features "what we are thankful for" and "what you can pray for" Jude and our family. I felt that this might be a better way to organize our thoughts and share with all of you. I also know that many of you have asked for ways that you can help and this will allow for me to share ideas for how we could use your support and prayers. We are so thankful for each and every one of you.

What we are thankful for:
1. In the last week, we learned that sometimes CDH can be missed on an ultrasound and that ultrasound techs may accidentally miss the signs. Sadly, babies with undetected CDH can be born and die shortly after birth without specialized medical intervention.
Additionally, our insurance only pays for two ultrasounds: one at week 12 and one at week 20. Additional ultrasounds can be scheduled and covered by insurance if medically needed.
We are thankful for the ultrasound tech that performed our ultrasound that day. She was attentive and worked very hard to thoroughly examine Jude despite the face that he was extremely wiggly and difficult to "catch". We are thankful that she did not give up and that she was especially focused on our baby boy. It was the longest ultrasound that I've ever had but it was the most important one!

2. My mom. She has been here all week helping us out with Annabelle and household duties. She has allowed me to rest and has loved on us in so many ways. I am so thankful that my mom has the ability to drop everything and come stay with us.

3. All of you. Your calls, emails, visits, texts and cards. The meals you've made, the support you've offered and the hugs you've given. But most of all we are thankful for your ceaseless prayers.

What you can pray for:
1. Right now we are beginning our research into the hospitals that have an Extracorporeal Membrane Oxygenation (from here on out we will refer to this as ECMO) treatments available and a team that can provide the best support for Jude with this method. (You can read more about ECMO HERE. None of the hospitals with ECMO are nearby. Most are 3 or more hours away. Will you pray for us as we research and decide on the best hospital for our delivery, surgery and recovery?

2. This might seem like super silly request but it is a very real one. Once I deliver Jude in December, it is our hope that Brian can remain with me as long as possible. Therefore our family will be temporarily relocated to the area of the hospital we choose. We already have someone who can keep an eye on our house and make sure that everything is alright but we are in need of care for our two doggies while we are away. We are open to a temporary or permanent home for them. If you could already start praying for this it would mean a lot to us. It has great potential for being a headache for us during the months that we are trying to focus on Jude and our family and we are praying that the Lord will remove this barrier.

Love you all!
Brian, Rose and Annabelle 
Written by Rose

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