October is Down Syndrome Awareness Month

I copied the following poem and link from some of the other blogs I read. I had to share the wealth. Justin and I are going to try to make it to the Buddy Walk on Saturday depending on how the baby is doing.

Down Syndrome Creed
My face may be different but my feelings the same
I laugh and I cry. I take pride in my gains.
I was sent here among you to teach you to love,
As God in the Heavens looks down from above.
To Him I’m no different; His love knows no bounds
It’s those here among you in cities and towns
That judge me by standards that man has imparted
But the family He’s chosen will help me get started.
For I’m one of His children so special and few
That came here to learn the same lessons as you.
That love is acceptance; it must come from the heart.
We all have the same purpose though not the same start.
The Lord gave me life to live and embrace
And I’ll do it as you do - just at my own pace.



Wedding Link: http://andycamphotovideo.com/scarritt-bennett/josh-bernadettes-wedding-at-vanderbilts-scarritt-bennett-chapel-in-nashville/

post op day 4

I feel like Gabe has made alot of progress today. His ECHO showed great improvement with his ventricles and the repair looks great. He has "mild to trivial" amount of leaking around his mitral valve. His chest tube and left ventricular wire came out today. They also started giving him very tiny amounts of formula through his Gtube. His heart rate is up the 160's ish which is something they are watching. He has a little bit of a temperature, so that may make his heart rate go up. They are trying to cool off the room some now. If that doesn't help, they'll draw blood cultures again. His Co2 creeps up above 50 sometimes when he starts to wake up (we want it below 50, means he's not working too hard to breath) because he fights the intubation tube. We will hopefully ween off the nitric oxide and get the oxygen down low tomorrow and extubate on Wed. Here's to progress.

post op day 2

Gabe is doing a little better today. We had a scary desat in his oxygen levels last evening and they had to bag him some. They put him on some nitrous oxide to help with his pulmonary hypertension. His fever broke. Throughout the night, he stayed stable. They are weening his oxygen down a little and letting him have one full "good day" before they touch anything else. His left ventricle has improved some and is now mild to moderately diminished in function instead of severely diminished. Gabe has required lots of medications to keep him sedated. This happens alot in babies with Down Syndrome...they're such fighters they fight off sedation. His heart rate dropped to the low 100's which is now a little too low. They're watching it close and think it may be this way due to him getting so much sedation. Poor little guy...what a fight he's going through. I just want to hold him.

post op day 1

Today has been pretty hard. Gabe developed a fever over night and his heart rate elevated to 200. His torso is warm, but his fingers and toes are freezing. They did an ECHO and his mitral valve isn't leaking much, but they did notice that his left ventricle isn't squeezing up to par. This means that his blood isn't getting pumped out to his extremities very well and his heart rate is high to compensate for this. The fever can be fairly common post op. There isn't much that can be done for the left ventricle other than continue on the medications they're giving him and give him time to heal. He starts to wake up at times and gets mad, but that's kind of the extent. They will leave him sedated for today and hope things improve for tomorrow.

post op

The surgery took about 5 hours. The nurse working with Dr.Manning came out to give us updates every hour. We met with the doctor afterwards and he said everything went well. The hole in Gabe's heart was pretty massive. He was able to patch it up very easily. The valves were a little more difficult to repair and he had to go back and add another 2 stitches due to some initial leaking, but he was happy with the result. He actually came in the room smiling which is always a good sign. They will be keeping Gabe sedated till tomorrow afternoon to give him some time to heal and recover. They will try to wake him up some tomorrow and do some ventilator tests to see if they can extubate tomorrow afternoon. His blood pressure is a little high now and they are giving him so medication for it. So far, no major curve balls have been thrown. He has his PICC line, arterial line, peripheral IV, brain oxygen monitor, intubation line, chest tube, direct heart lines, and catheter. He also has pacemaker wires in place just in case, but his heart has been pacing well on its own so far. The next 2 days will be pretty critical. We should be able to tell by early next week any lung or trachea issues that are leftover if there are any low oxygen levels or work of breathing.

Special thanks to Kelly for organizing Gabe's Buddy Walk and bringing us cookies from Max and Erma's today. Go Team Cash!

pre-op

We got to the hospital early this morning to hold
Gabe and tell him what a brave boy he was. We even sang a little "Eye of the Tiger". We walked down to surgery with him and then had to kiss him good luck. There were tears involved. Then we waited.....

It's Over!!!

This is Justin. I'm just posting to let everyone know that the baby is out of surgery and it was successful. Michelle will post with more details later. Thanks for all your support!