Well friends -
Abby is long asleep and I need to be following her example, but I can't go to bed without letting you know how our appointment went today. First of all, let me say that I'm sorry I'm not sitting down with many of you to tell you face-to-face. News like this needs the personal touch, and I simply don't have the energy to make that many calls and tell you each one at a time. So please forgive the impersonal nature of e-mail.
Second, I will say that we were very impressed with Dr. Kyzer. He was kind, knowledgeable and thorough. He is a young doctor, but many of them are now-a-days! :) We have confidence in his diagnosis.
So, about the diagnosis. Abby has a VSD - a ventricular septal defect - or a hole in the wall between the right and left side of the heart (the septum). These are apparently quite common (3 in 100 people have them) and often require no intervention. Sometimes they are not very big. Sometimes they are in a location that will grow closed. Abby's is neither small, nor in a place that will close on it's own. Dr. Kyzer says it is a large hole in the upper part of her septum - where the tissue is more like a membrane than a muscle. Currently, part of the tri-cuspid valve is partially covering the hole when the heart pumps. This valve has bought us some time and has minimized the effect of the VSD. For that we are thankful. However, the valve doesn't completely (100%) cover the hole, and there is still quite a bit of oxygen rich blood from the left side of the heart going through the hole into the right side of the heart instead of out to the body.
What this means - briefly - is that the left side of her heart is slightly enlarged from pumping a higher volume than the right side, and from working harder to get the blood to the rest of the body. She is burning up most of her calories to keep her heart pumping rather than putting on weight or developing other parts of her body - like her brain.
So, he is recommending heart surgery.
On the one hand I am shocked and reeling from this diagnosis. My heart is heavy and I can't get past the images in my head of "open heart surgery".
On the other hand I can see that Abby has developmental problems and weight gain problems. They are telling us that her heart is a major part of that problem and it is fixable. My pediatrician told me today that for a heart surgeon to correct a VSD is kind of like tying his shoe. It's routine and it's one of the most simple surgeries they do.
We were left with the option of waiting a couple months to see if it begins to close on its own, or scheduling the surgery sometime in the next few weeks. We left thinking we would need some time to pray and process and make a decision, but as the day has progressed, it seems the decision is very clear. Our understanding is that she will most likely get worse, not better, until this is fixed. There are also many developmental delays and damage that could be long-term if we don't act in a reasonable amount of time. So, if she is going to have surgery, we would rather do it sooner than later.
Please pray for us. I know you already have been - and I just want you to know how much it means to us! God is our rock and fortress. Our refuge in times of trouble. . . I want to tell you a story:
When I was pregnant with Josiah, I sang him a blessing song almost every day - it is still our bedtime song. When I was pregnant with Titus, I chose a different song and that is "his" song. I sing it to him often at bedtime too. So when I was pregnant with Abby, I asked God, "what should Abby's song be?" and instantly a song popped into my head. There was no doubt in my mind that it was from God and that it was Abby's song. One weekend in church we were worshiping and we sang this song. Dave invited us to pray at the front and I did go forward to pray as others were singing Abby's song (this was before she was born) I had this overwhelming sense that God was speaking to me and that Abby and I were going to NEED the comfort of this song - the truth of it's words. Another time in worship I again sensed God preparing me for the child in my womb through this song. The song? "You are my refuge"
(with the words I sing to Abby - so it's third person)
"You will find a place, you can call your own
Here in His embrace, where His mercy overflows
It's here that all your doubts and fears just melt away
You'll lay your burdens down as you look upon His face
He is your refuge
He is your sanctuary
When you feel afraid, He's your hiding place
He is your refuge
And when the storm is raging
Underneath His wings, You'll rejoice and sing
He is your refuge"
I find it very appropriate, don't you? Sometimes I sing it to both of us "He is our refuge!"
I'm calling the hospital in the next couple days to see about scheduling, I'll keep you posted.
Goodnight and God Bless - Jennifer :)
No comments:
Post a Comment