Monday, October 27, 2008

Neonatologist Appointment (Medically, nothing can help our conjoined twins)

Today we had our first appoint with the neonatologist. He was really sweet and did a great job explaining himself to us in terms we could understand. He was especially interested in our case because he is not only a neonatologist, but also a cardiologist. More than that, he found out when his wife was pregnant at 12 weeks that they had twins and one of them had a enlarged head that would be fatal to his child. Abortion was also not a option for them, so they delivered and their one boy lived until he was 9 months, the other twin is still alive to this day. So not only was he a expert in the field that dealt with our situation, but he also understood what we are going through emotionally, and all the hard decision making we have that goes with it.

He and his NICU team (26 in total) have been discussing and looking into our case for the last 5 days or so. Since finding out about our situation there have been 2 more cases of conjoined twins just like ours. One set of conjoined twins was delivered last week but has already died.

He called the top 3 hospitals that deal with cases like ours this week to see if there was anything they could do, but all of them said none of them would do any surgerys based on our babies heart condition and the way they were conjoined since 100% of the surgeries done to help babies like this end up in the babies dying withing 1 to 3 days. He was looking for some kind of ray of hope and was surprised that there wasn't anyone that would even try anything.

  • Our twins are Thoracopagus - joined at the chest; share a single heart and have some cardiac connection issues; some organs in the abdominal region may be malformed (about 40 percent of conjoined twins)
After we were done talking with him, my doctor (who is a pernatologist) and the cardiologist came in to make sure we were all on the same page. I'm so thankful for all of these doctors but especially my doctor, it was great to have him in there.

So as it stands, there is nothing that can be done medically to help our babies.

We now pray that the twins would be born breathing (since that is still a concern) and that my (Vanessa's) recovery, from the csection, would be quick so I can spend as much time with the babies as possible. We also pray that God would heal their heart. We pray that God's will be done and that Jesus Christ would be glorified no matter the life span of Melody & Madison.

As you do not know the way the spirit comes
to the bones in the womb of a woman with child,
so you do not know the work of God who makes everything.

- Ecclesiastes 11:5


9 comments:

Stephanie Rohloff said...

I am so sorry to hear todays news...but I am still hopeful and will continue to pray for Madison and Melody!
We love you all!

Andrea & Jim-Britt said...

No words can express the emotion I feel for you, I am thankful for the doctor God has brought you to. I love your babies so much & will be praying for them & you as well! Love all of you!
All of the Britt-Brown's LOL!!

jelena said...

Vanessa, I can only say that I love you in Christ and whether or not God heals their heart, I pray God will heal your heart. However, I will pray that the Spirit will come to the bones in the womb of your children and work out everything God wills. My voice will beseech as Abraham, Moses, and Elijah did of God for all their woes. Be still and know your God. Love in Christ... Jelena

4 Little Men and Twins said...

Still praying for you and those sweet little miracles!

Brittany

Karen - Mommy to four sweeties said...

Praying for you and your family.

Anonymous said...

Vanessa & Jason
It is amazing how Godlays a true burden on your heart for fellow brothers and sisters as if you were going through it yourself.....please know that the prayers are continuing frfom Hershey Pa as I said before and I have asked other sisters in Christ to be in prayer as well. It is only the grace of God that could keep you two trustin in His leadership and Lordship over your lives and the lives of your little ones ....may God receive much glory through His will being done. ~~Angela

Verna said...

From a grandmother's side of things I can understand the prayer that they will be healed,that is my prayer for Noah and your girls as well. I love that our Lord brings just the right people in to our lives when we need them!

Jess said...

Oh my goodness; I came to your blog because of your link to my election post.

What faith you all are sharing for all the world to see. What a sweet blessing it is to me to see your desire for God's glory and your willingness to be used as He plans/wills. I am praying today for your entire family to have grace and peace... for you to be filled up with His Spirit and lack for nothing throughout the remainder of your pregnancy. For the babies, I pray for grace and life and healing, and that His will will be done.

Thank you for sharing your story so that the Body can learn from you and what God is teaching you.

Many blessings.
Jess

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