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!

Mushy Monday

Here he comes...

And there he goes...

(We did this for a good 15 minutes, if not more! Back and forth! He LOVED it! So proud of our little man!)

Mushy Monday

Very very early Sunday morning my precious new nephew was born! Since it was so early in the morning and we still needed to travel an hour and a half back home, I just held him briefly before we left, and now I just wish I could hold him sooooo much more! Selfishly, it's kind of exciting b/c I can tell I'm getting back into liking little babies! That sounds mean but when you have one of your own, it's not as exciting to hold a little bitty one b/c you do it all the time. And then it's a little sad b/c that means Tommy is growing out of that baby stage (that being said I love the stage he is in now and watching him grow) but he is my first little baby! Anyway back to my nephew, he is beautiful and very healthy! 9lbs 12.5 oz 23 inches! SHEEWWY! Thank the Lord for a healthy baby but I would not want to endure that delivery! Tonight was the first night I've gotten to say Tommy's nightly prayer with him and Eli is actually out of the womb! We pray for all of his cousins by name and it was so fun to have a precious face to put with that name tonight!

Another thing I realized tonight as Tommy and I were doing his nightly routine is how when I first start singing the first of three songs we sing, God is so Good, my mind goes through the many voices I've heard sing that with/to Tommy before he's gone to bed. One of the first I think of is my Papaw Frank, Tommy's great grandpa, when they visited in the past and Tommy was there to go to sleep my papaw joined in in his songs and prayer. And both my parents sing and pray with him, my mother in law, Kyle, Aunt Jennifer...and I'm sure there are many more! But it just made me smile and so thankful for a great deal of family who not only love Tommy so sweetly to sing and pray with him but also to believe the words we're singing. God really is so good!

Mushy Monday

So I realized the other day that I made Tommy a whole month older than what he actually is, he will be 21 months, this month. I changed the past blog to read 20 months, that way if I read it in the future it will be the real time line. I've been telling all kinds of people he's 21 months but he's actually 20. Oh well. I'm glad he's a month younger than I thought!

My pregnancy so far is going really really smoothly. Praise the Lord! I will be 20 weeks on Tuesday, so I'm halfway there! I can't believe it! We had an ultrasound this past Thursday morning, we did not find out the sex of the baby. And I'm glad we aren't finding out, it is fun this way. But I still kind of want to know. I want to know more with this baby than I did with Tommy! The baby looked beautiful! He/she has really long fingers. They did find one small thing during the ultrasound, it's called a choroid plexus cyst. It's a cyst on the brain, which sounds really bad but it's of no consequence to the brain or the baby's thinking. The cyst is located where the spinal fluid is held and in most babies the cyst disappears but even if it doesn't it will not harm the baby. However, this used to be considered a marker for Down Syndrome and with our history of Tommy having Down Syndrome we will do a special ultrasound to check for any other signs. Our OB does not think that the baby has DS, that's actually one of the reasons they looked at the hands and fingers, to see if they looked shorter (we found that out later). The doctor said she would be shocked if we had another baby with DS and is not concerned about the cyst but it's her job to have it looked into further considering our history. And we actually had planned to have the exact same special ultrasound done for the baby to check out his/her heart b/c of our history and our family history of heart defects. We had the special ultrasound done with Tommy too, and his heart problems didn't show up there. I read a statistic that only 1% of the babies with the cyst end up having DS. So we'll go have the ultrasound done on the 19th of this month, to see if the cyst is still there, and to check out our baby's heart. We are not worried, obviously it is something to think about but we know the Lord is in control and that there's no need to think too much into it until we find out more information.

So this week Tommy's vocabulary has more than doubled, in sign language that is. He now knows 8 signs (and I'm pretty sure this is the order he learned them in) more, daddy, all done, please, dog, eat, mommy, thank you. He also participates in the song, "If you're happy and you know it..." now and he claps his hands, stomps his feet, and pats his head! Tommy is just flourishing and it is such a joy to watch! He has just amazed us with how quickly he is picking up on things and learning to mimic us now. For the longest time he had NO, ZERO, NADA desire to repeat what we were doing, but now he LOVES it, b/c he gets praised when it happens! And he has also developed a little bit of an attitude/temper. When he doesn't get what he wants, especially when eating, he will start to whine/scream/cry. But so far he is responding really well and obeying when I sternly and loudly say, "STOP" and then he stops screaming and I look at him and praisingly say, "GOOD LISTENING!" and he starts smiling and is so proud of himself! I hope he continues to respond well to discipline, as well as responding well to praise! I'd much rather teach him how to behave properly by getting excited over him doing good then having to reprimand him, but I know it's good for him to know boundaries, etc. I do sound like a crazy person though when these times happen - b/c I have to change my tone and sound intentionally stern and then seconds later - smile big and happily say good job! Haha it's pretty funny, but hey it works...for now at least! And when this doesn't work I try to remove him from the situation to distract him, but if either of those don't work we've decided to do time out in his room, but so far we haven't had to do that.

In other news, we are still waiting on cousin Eli to be born! He could be here any day now, and we're all anxiously awaiting for Jeanne's phone call or text to let us know we need to be on our way! We've been able to skype a lot with Aunt Jeanne lately and Tommy loves to stand at the couch and listen and laugh at his aunt! He's been showing off his new signs and song skills!

That's all for now!

Mushy Monday

I am very excited to brag on my husband and how he has been intentionally cleaning up after himself more and more. I love to spoil Kyle and take good care of him, but there are times when this treatment is taken advantage of, sometimes intentionally to be funny and push my buttons, but other times unknowingly.  Anyhow, I'm very impressed with his new motivation to be intentional to love me in this way and I hope that it stays. I tease my mother in law all the time asking her what she got me into by spoiling this boy, and she always apologizes to me! Haha!

But from my perspective as well, I want to be willing to serve my husband and love him by caring for him in what seem to be menial tasks - taking his dishes, cleaning them, throwing away trash, putting things back where they belong, etc. - and I want to do it with a good attitude. I do a lot of mental grumbling and I don't like it. So I've been trying to pray when that happens that I would remember that it is a joy and honor to serve my husband and son and that I would do so joyfully; and that I would remember that I am ultimately serving the Lord. I don't want to sound holier than thou by saying that - trust me there are days when I pray that back to back b/c right after praying I start complaining again. Or there are days like today, when I forget to pray it all together.

It has been heavy on my heart lately for a sweet friend at our church who recently lost her husband in a tragic car accident. My heart literally aches for her at times and I am overcome with emotion to put myself in her shoes. I can't imagine her grief, nor do I want to. But it makes me want to cherish Kyle all the more, even the the quirky things I complain about b/c I know I would miss them terribly if they were suddenly gone. And knowing that our friend who passed away was such a great husband and father, makes me associate him with Kyle even more.

Kyle has such an important and strong presence in our home. I love seeing how much he has grown and changed as he has become a dad. The Lord has increased my love for him so much in the past year and a half and I'm so thankful he is my husband.