God is good! Today we had out follow-up visit with our TCH Cardiologist and we left full of good news!!! Parker has gained 1 lbs 3 ozs in 2 weeks!! MORE then they expected! He now weighs in at 9lbs 3 ozs!! His oxygen levels were 96% and his pulse 55 (they want them below 60), so an A+++ report! Our Dr. was really pleased with Parker, said he looked terrific, couldn't ask for anything better!!! She warned us that he may need Lasix, a type of medication (diuretic) as things progress to help him process fluids, but she didn't see the need today. We will see her every 2 weeks for the next 6 weeks then monthly until surgery. We talked more about timing for surgery and it looks like mid October is our target date. It is important for kids with heart conditions to have them repaired before winter/flu season starts (we will all have to have the flu shot and Parker the RSV vaccine) as any illness can compromise an already challenged situation. We are already washing hands and using hand sanitizer like MAD, please don't be offended if we offer it to you when you hold our precious boy..we aren't GERMAPHOBES (is that a word?), just have to be vigilant about protecting his health!!!
Many have asked if we've talked to the kids yet. We decided that we will wait until we get closer to the surgery date. It is too far away right now and we don't want to add to their stress. If you know our kids you know they don't let anything go and we'd be hearing about it every minute for the next 3 months! We have peace about this decision, so we know we should wait. We know that God will give us the right timing to talk with them more. We haven't told them about the downs Syndrome diagnosis either, too many said to wait until Parker is one year old. We continue to pray about this and will revisit this issue after we deal with the heart surgery! Baby steps, please!
So, now what...? We are now waiting to get our scheduled appointment with the TCH Meyer Clinic (the only specialty Down syndrome Clinic in Houston). Paperwork has been mailed back, our Dr. has made referral, and several "special friends" helped speed this process for us. Speaking of special friends....I am humbled by our friends and "friends of friends" that helped us identify our cardiologist and our desired surgeon. It is by no accident that we live in Houston, have a WORLD class pediatric cardio surgeon HERE, and Parker is able to be HERE for this surgery. It has been amazing the people that have helped us identify these resources and the connections have all avenues clearly pointing to Texas Childrens Hospital. God already had all of these details worked out for us before Parker was born. It truly is His divine plan. Gives me chills as I write this...
We continue on our new journey...waiting expectantly....taking it day by day....thankful for each and every precious moment. We started this blog for many reasons, please read and pass it along to anyone you think would be blessed by its contents or for those that would join us in prayer for our family. Your comments are precious too, so please leave them as you feel led.
Our specific prayers are for Parker to continue to grow and thrive independent of medications and that our timeline stays in place for October. We do continue to pray for a miracle, we know nothing is impossible for God!
Matthew 6:34Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.
1 month ago