Well, I've never gotten around to posting about the boys last game. I will still try to do that, but won't make any promises toward it. :-)
Right now, I want to share what's going on and ask for your prayers. Thursday, we had an appointment with the perinatalogist. After a fairly long ultrasound, they sent us on to the pediatric cardiologist (not in the "plan" for the day). There, they did another lengthy ultrasound (I spent the better part of 3 hours total on my back!), and then we got hit with the diagnosis for our son.
He has what is known as Ebstein's Malformation of Tricuspid Valve. It is a rare defect, affecting about 1 in 210,000 births. While it can be so mild that it isn't even detected until a child is older, or even adult; the cardiologist believes that our son will be severely affected by it at birth, because his heart is already enlarged. The enlargement of the heart can impede the development of the lungs, and so, often these babies are not just dealing with a heart issue, but also have underdeveloped lungs.
Here is a short description of what we are dealing with: Ebstein's Abnormality The Dr. gave us worse case scenario which included our son not even making it full term, and if he does survive to birth, very possibly dieing within the first week. Most likely he will be a very sick baby when he is born, and will immediately take up residence in the NICU.
Our delivery plans have changed once again ~ did I mention I DON'T like change? But of course our top priority is doing what is best for this son. We will be delivering at Sacred Heart so that he will have access to the best heart Dr.s and medical care from the start. One of the things I am thankful for is that heart babies tend to do much better when born naturally, so it looks like my hope for a VBAC will be buoyed by what's best for baby.
We are praying for healing for his heart. But, we realize that God's will may not be to heal him. So, we are also praying for the faith, strength, grace and mercy that we need to walk the path our feet are set upon. Our "secondary" prayer, if you will, is that his heart will not enlarge to the point of impeding lung development.
We have much to be thankful for, in the midst of all this. While a part of us would like to be oblivious to what's going on, we are thankful that we know ahead of time. We can deliver in the hospital where baby will need to be, and I won't have to be separated from him because he has to be transported. We can plan for an extended stay, and prepare not only ourselves but the other children. Because we know there is a problem, we can pray knowledgeably for this baby. And, we are thankful to once again have the opportunity to walk in trust and faith ~ this is not to say that we are happy about our son having a congenital heart defect. But we know that God allows different trials in our lives to glorify Himself and to conform us further into the image of his Son. I am thankful that He loves us enough to do that!
We have a wonderful church family who has surrounded us with their love and prayers. We are blessed with friends and family who love us and pray for us. We are blessed with brothers and sisters in Christ around the world who love us and pray for us, even though we have never met face to face! I sat here in tears yesterday morning, reading emails and Facebook messages from friends far flung ~ letting me know that they are praying for our son's heart and for comfort, peace and wisdom for Mike and I. What a blessing! How humbling to know that the God of creation, He who rules the universe cares enough about what's going on in my little world, that He would move his children from various places in this world to pray for my unborn son. I stand in awe of Him.
We will have another cardiologist appointment at the beginning of December, and hopefully will know a little more at that point. Right now we're in a 'wait and see' mode. I am eternally grateful that we know the One who knows the outcome, and that we can fully trust in Him.
Saturday, November 7, 2009
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Beautiful, Tracy. Oh to have that faith! May the Lord continue to bless and comfort you and grow you during this time. Hugs to you.
ReplyDeletePraying and hoping and keeping the faith with you, Tracy. If you decide to do a CB or other site for Jethro, let me know and I will add him to our prayer roster on Noah's blog - or I could just add this blog address.
ReplyDeleteBlessings,
Kate
www.homeschoolblogger.com/ourquiverfull
You're in our thoughts and prayers, Tracy. Grace and Peace to you and your family.
ReplyDeleteJanice from CBP
Tracy, Janet told me of your wee fella's difficulties some weeks ago, and today, when I asked for an update, linked me to your blog.
ReplyDeleteI just wanted to tell you that we'll be praying and will try to stay updated by saving your blog to our favorites.
Big hugs, dear sister. Remember, our faithful God is your very present help in times of trouble.
Love,
Debbie Yuck
I will pray for your precious son. Whatever happens, he is in God's loving hands.
ReplyDeleteA family that my family is very dear friends with has a son with a heart valve defect. I am not sure if it has a name. He spent the greater part of his first year in the hospital and now has an artificial valve. Such a health problem is very taxing on a family, but there are blessings as well. The most obvious is the child, of course, but it also helps draw the family together in ways you may not anticipate.
You are in my prayers.