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Strength to Care

Lessons from Matthew & Isaac – Our CHARGE Syndrome Journey

His Name: Isaac Gabriel Troupe

You heard it here first folks! His name will be Isaac Gabriel Troupe…Our fifth child to be born (tentatively) on June 8, 2012. We liked Isaac because Isaac means “laughter” which is what many people did when we announced we wanted to have another child. And, Gabriel because Gabriel means “strength of the Lord” which we hope God grants to him and to us through him to begin and follow through on this journey.

A big thank you to all who have been diligently praying for all of us in the Troupe household. Also for sticking with this blog and prayer chain as we have taken a small break away to “stay the course” and gathered the much-needed information we need. Throw in the mix a change in duties at my workplace, Easter weeks and Matthew adding some of his own dictated home improvements…well, you can imagine how crazy things have been.

Now, for the information many of you have been asking for and to answer the question of “What is going on with Isaac?” Many of you have prayed for us to get the needed care for Isaac (and Theresa) “out of network” from our insurance provider. Our provider is great, but the specialized care needed for a CHARGE Syndrome birth, with the multiple complications that can arise, it was crucial for us to arrange for birth and after care at the University of Michigan, Mott’s Children’s Hospital. Your prayers and our’s were answered and granted after jumping through a few hoops and seeing a few more doctors. They all had the unanimous answer of U of M.

We have been encouraged and blessed by the team we have met with at Mott’s so far. We were already familiar with a few of the doctors, they are the same who have provided great care already for Matthew. They embraced our needs and one even called Theresa within a few minutes of receiving an email from her sharing our news of a possible CHARGE diagnosis. Our first appointments were this past week. We learned of some good news and some not good news when Isaac joins us in a few short weeks.

The good. The heart ECHO showed “no remarkable” findings…meaning that at this time there is nothing that we need to be immediately concerned about at birth. When things have settled down they will do another ECHO a few days after he is born. There is one anomaly they are keeping an eye on…the return of blood flow coming from his lower body is not going to the normal spot on the heart…blood is returning and being pumped back out but the path that it takes is not known at this time…kind of like Matthew’s heart…he has extra plumbing too.

The not-so-good. In several ultra-sounds we have been keeping an eye on Isaac’s stomach, or in this case, a lack of evidence of his stomach. Not seeing it does not mean that it is not there…but what it does mean is that there is the lack of amniotic fluid in it. The reasons for Isaac’s lack of fluid in his stomach is due to one or maybe two reasons. I will forgo the medical terminology and use the simple explanations…either his esophagus is not attached to the stomach and has created a pouch at the end, or the esophagus and the trachea have fused together and are sharing the same duties…or there could be a combination of all of these things. In any case, these things can be life threatening…either at birth or complications from the surgeries to correct. This alone opens up many opportunities to pray him through each step of the way.

What is unknown. We will not know some of the other pieces until he is born…the severity of the cleft lip and/or palate, eye colobomas, breathing obstructions/difficultly and his ears.

One way God continues to show his face through this journey is through something Matthew did during our long day at U of M. Matthew had joined us for the day when we added an appointment for him when we knew we were going to be there. During one of the ultra-sounds they printed a picture of Isaac on a copy paper sized sheet of paper so it was nice and large. I showed it to Matthew and signed “baby brother” to him several times. Although he seemed not to be interested, an hour or more later he was watching a Signing Times video with a family theme. When “brother” came up he grabbed my finger and pointed to the word bother on the screen and then pushed my hand in the bag where I placed the image. When I pulled the sheet of paper out, Matthew placed it on his lap and signed “baby brother” with a smile on his face and a giggle. Makes me misty eyed all over again as I write this.

Our prayer for the coming weeks is for peace in our hearts as we prepare for the birth day. There are so many logistical things to plan and prepare for. Pets, Megan leaving on a mission trip, care for Matthew and Sarah, Hannah preparing for a mission trip for late summer and some type of “normal” life for Hannah and Megan such as county fair season…all while we are almost certain of an extended stay in the hospital…across the state.

One celebration as I end this post…the picture posted above is of one huge milestone that happened just this weekend. Just a few months shy of his 11th birthday…Matthew peed on the potty for the first time. What a great picture of this accomplishment. This will be a long process but we are encouraged that he actually did it!

When we are weak and feel as though we are at the end of our rope…things like this great quote popped up on my facebook page by a friend we met while Matthew was having his heart surgery a year ago. It is from a message that was preached in their church a state away…God’s message from his word  has no boundaries.

God has bigger plans than our circumstances!

Many have asked if it is okay to share this blog about our Lessons from Matthew…not only is okay, but we emphatically ask that you would. We welcome any chance to show how good God is and how he is working through the power of prayer. Conveniently use the “Share” buttons at the bottom of this post. If you want to join in praying for our family and getting updates on our journey, join us by filling out your information at the top of the right-hand column.


  1. D B Vogel

    Another great update Kevin. Please know that you, your family and your journey are prayed for in our home.

    Blessings and prayers,

    Don and Bonnie

  2. Raapdenise

    Kevin and Theresa,
    You and your family are in my prayers. Having a little one is hard enough but with all the “extras” this one is bringing into the family, I can’t imagine how you are doing it all! But you two were always some of the most patient, kind, loving, and compassionate people I knew so I pray you can handle this as well. If you need anything, plz call.
    Denise Raap

  3. Tom

    Thank you for the update. Praying for you all. What a wonderful faith filled name! Praying right now and will continue to pray for the peace you desire!

    1. KevinTroupe

      Tom, thank you for praying us through this…I still lurk around your “Affirmations”…thanks for keeping up your ministry!

  4. Megan

    Thank you for sharing this journey with us. My almost one year old daughter has CHARGE and it is so encouraging to watch you step out in faith to grow your family.

    1. KevinTroupe

      Thank you, Megan…we feel we have been prepared for just a time as this…as scripture says it…it doesn’t make it easier in the day-to-day, but certainly gives us a different perspective of the “why?’ question…we daily work through the “how?”

  5. Jillanaoftx

    Words sometimes are not enough to express the emotions and the way a person’s words can move us. This is place I am at after reading your blog. I am part of your CHARGE family and also somewhat unique. My daughter, Caitlin, wasn’t diagnosed until she was 18 years old and she is almost 24 with a loveliness I truly relish. I too can see how you relish life and and when it isn’t so great, you get through it.
    Thank you for making such a personal experience for you and your family publicly available. I am so much better for it.

    Hope to see you around CHARGE World……

    1. KevinTroupe

      Thank you for reading about our journey…I know the feeling sometimes when we do not have the words to speak. Those of us who deal with “special needs” no matter the age, are somewhat kindred spirits and are able to empathise when others may not be able to.

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