Encouraging news!

Today Tommy had his 18 month check up - even though he'll be 20 months in 6 days! We had to reschedule his appointment b/c he got strep and was on an antibiotic for a couple of weeks.  Anyhow this doctor visit was such a blessing! First of all Tommy did great! He was such a big boy and was so sweet to the doctor. I have mentioned his pediatrician in the past and I'm a big fan of his. I like him for many reasons and today is a great example of why.

I was feeling very uncomfortable with how we left things at the cardiologist last time and I was very confused. I called to try and get clarification from the cardiologist but I was still pretty lost. I understand (as much as I can as untrained professional) what is wrong with Tommy's heart, his cardiologist does a wonderful job at explaining that! However, we were on different pages when it came to the topic of when Tommy would have surgery. So after our conversation he kindly suggested that we move Tom's appointment up 3 months and make sure we're the last appointment of the day so we can take our time and have any questions answered that we need.  He was very sweet at wanting to accommodate this frazzled mom. Well I had told Kyle that I was planning to talk to the pediatrician about it b/c he's been along with us too for the whole ride and I wanted to see if it made better sense to him then it did to me. And it did, and he explained it so clearly.

Basically he said the information he got from Tommy's last cardiologist appointment showed that the ASD has gotten smaller. Did our cardiologist say this, no. But Kyle thinks he didn't mention it b/c he doesn't want to get our hopes up that it will close on its own and we still understand that the likelihood of that is extremely slim (but we know God can do great things). And the pediatrician agrees that Tommy will ultimately have to have surgery but it's an encouraging sign it's smaller, b/c the smaller the patch they have to put in, the better that is for Tommy.  And he also said perhaps as Tommy grows the bottom part of the Atrial wall will grow up and possibly allow for a heart cath instead of open heart surgery! Now I say this telling you that he does not necessarily think that's what will happen, but it is something to pray for. And to be honest - I am just so excited to hear the ASD is smaller! It's still significant, it's still surgery worthy (trust me we've seen the echos and the hole looks big), but we'll take what we can get! We thank the Lord so much for the improvement, no improvement is insignificant!

Then I asked the pediatrician for clarification as to what kind of growth deficiency they look for to know if the heart is causing issues. And he said HUGE growth deficiency, almost to the point of wasting away, and it wouldn't just be physical we'd be able to notice he'd be missing milestones, and he said it would be really obvious to us. He said Tommy is doing amazing. And he said that, that's probably where the big miscommunication was between the cardiologist and us occurred - most babies with this heart defect and down syndrome do not thrive this well. So he explained that the cardiologist was just preparing us for what usually happens and that Tommy is just beating the odds.  Tthe cardiologist had also told us that Tommy is doing better than expected and he is very pleased with his progress but for some reason coming from the pediatrician it sounded way more encouraging. I wish he could join us for our heart visits!

We don't want to get everyone overly excited or give false hope that Tommy won't have to have surgery. But we want to make sure we're giving the Lord glory for His goodness and for hearing our prayers. Recently I've started adding to my night time prayer with Tommy that if it's the Lord's will for Tommy to have surgery that He would give us wisdom as to when he should have it, and before we were thinking sooner rather than later (and by sooner we still mean years, not months) and I feel like He helped guide us in that today. If we know Tommy's heart is showing improvement, that gives us much more of a reason to wait.

Over all we are thrilled with this news and Kyle and I both feel so encouraged. I am sure the cardiologist has gained wisdom over the years that as he does not know each set of parents and how they will react to different news that he is cautious with what information he shares and how he shares it. But our pediatrician knows us a little better, we see him way more often and he knows how I handle Tommy from a medical aspect. So I think he either knew we could hear that and not put too much hope in it or he just thought we already knew and that the cardiologist had told us. Either way I'm glad he did. It's so silly but it did make me feel like, "God you really are listening! Thank you!" I know that the Lord hears my prayers but how awesome it is to see Him hear them. Thank you for joining us in lifting our sweet boy up in prayer and for celebrating with us in all of his accomplishments.