Not so exciting news...

So Tommy went to his cardiologist appointment last Monday only for us to get completely different news from the last visit. He is still as healthy as can be but the cardiologist has changed his mind and sees no benefit in waiting for Tommy to have his surgery. He wanted to schedule it for April but Kyle mentioned we're expecting baby # 2 (who is still nameless) at the end of May and wanted to make sure Tommy would be fully recovered by then. And the doc said that if he had surgery in March he would be confident that he would be fully recovered before the baby, but April would be cutting it close. So from there he said that the next step would be for him to talk with the surgeons and get there opinions and he'd call us the following week (now this week) to let us know their thoughts. When we left I was very emotionally overwhelmed, keeping in mind I'm pregnant = hormonal, I had a cold and was feeling really worn down from it, and we're talking about operating on my precious baby's vital life organ! But I've learned it's better to cry when I feel like it and to not hold it back b/c that just makes me feel about 10X more overwhelmed than I already am. So I cried in the car on the way home. And for a lot after that through out the next couple of days and many conversations when updating immediate family. (Oh and side note, was not too happy about the doctor completely changing things up again but we've pretty much come to expect it and I felt peace knowing that the surgeons would help pinpoint a time.)

Anyway he called this morning and let us know that they discussed Tommy's situation at length and all agree that it would be best to go ahead and do the surgery. He said usually he avoids the hospital during this season if at all possible b/c of RSV but it's been incredibly light this year so he feels much more comfortable with doing the surgery at this time. The next step is for the surgeons' office to call us and set up a time for questions and surgery. He said that they will do it around our schedule and that he, the cardiologist, will be present for the surgery as well.

There is a part of me that felt unhappy with this news but also relieved to just have an answer and to get this over with. The anticipation is tough. There are definitely parts about this that emotionally overwhelm me but I am also very thankful that we have great surgeons and that they know how to fix his precious heart. We appreciate your prayers. Some specific ways you can pray is for a successful surgery, a swift recovery with no infections, strength - physically for Tommy and emotionally for me, Tommy to be healthy before and after surgery, and for the Lord's will to be done. We're thinking we'd like to aim for the beginning part of March, just in case Tommy does get sick, if he has any kind of infection they'll have to reschedule so we want to allow a buffer for that.

In case you too are struggling with the thought of the Lord not healing Tommy's heart or even just allowing the wall to grow up to where he could have a heart cath instead of open heart surgery, let me tell you it's been a tough pill for me to swallow as well. I did not feel angry with the Lord about this news, but I felt unhappy with His decision. And while I understand that that's not trusting in His sovereignty and goodness, that is how I felt. But the encouraging part, those are my emotions and feelings, they are not truth. Therefore I took the advice of a very wise woman that shared her testimony about struggling with fear when she knew her children had a disease that was fatal. She said she spoke truth to her feelings, b/c our feelings are not truth. She used the Word and reminding herself of God's character and it eventually helped to change her feelings. It is hard for me to understand why the Lord wouldn't choose to heal Tommy's heart, b/c I fully believe He is more than able, but I will trust in His goodness and in His sovereignty that He knows what is best. And honestly with time, even just a week, I can feel that my heart is softening. God is good. There is A LOT to be thankful for - doctors who discovered his heart problem, doctors who can monitor it, surgeons who can fix it, doctors who care about fixing it and prolonging Tommy's life expectancy even though he has DS (back in the day they wouldn't have performed this surgery b/c they wouldn't have seen it as necessary to prolong the life of a person with DS), getting the surgery done before Tommy will remember, having this done before the new baby comes - most likely making me feel torn and guilty for having more concern and care for one child over another, and MOST importantly a great God who is watching over my son's life and has allowed all of the things listed before this to occur.

If you have any questions feel free to ask. We'll keep you updated as to when we have a date scheduled. Also for anyone who goes to church with us or is related to us, we ask that you please do not mention this to my Granny Jane. She has no idea about Tommy's visit last week and we don't plan to tell her anything until we have the surgery scheduled. When we thought Tommy was having surgery this past fall it really caused her to worry and even effected her health. Since she spends the vast majority of her time at home it's really all she will think about once she knows so we are trying to handle it with care.  We appreciate your prayers and love and care for our family!

I'll leave you with a picture that will surely brighten up this post!