So after we jetted out of the Hospital we raced to our home away from home.
We had a great dinner and a great time hanging out with Jeff, Ellen, Abbey and Harrison.
The next day Sam, myself, Madeline, Abbey and Harrison made our way to the Botanical Gardens... It was BEAUTIFUL! We had so much fun!
Finally, it was time to say goodbye to our new friends and St. Louis.
We headed home on Sunday morning and we made it home in about 12.5 hours.
The ride home was a little more difficult but all in all Maddie did GREAT!
We are so happy to be home, but are looking forward to seeing everyone again next year at our follow up visit with Dr. Marsh!
Again, Thank you everyone who prayed for us and for our little girl!
This could never have been this easy if weren't for your prayers and the Grace of God!
the above is Madeline just 6 days post surgery!
The next day Sam, myself, Madeline, Abbey and Harrison made our way to the Botanical Gardens... It was BEAUTIFUL! We had so much fun!
Finally, it was time to say goodbye to our new friends and St. Louis.
We headed home on Sunday morning and we made it home in about 12.5 hours.
The ride home was a little more difficult but all in all Maddie did GREAT!
We are so happy to be home, but are looking forward to seeing everyone again next year at our follow up visit with Dr. Marsh!
Again, Thank you everyone who prayed for us and for our little girl!
This could never have been this easy if weren't for your prayers and the Grace of God!
the above is Madeline just 6 days post surgery!Madeline's Surgery Part 2: Madeline and the Smaller Tongue.
Wednesday, August 05, 2009
(first let me warn you there are a few yucky pics, so if you are really unable to look at a little blood then you may want to avoid them...)
So.... After our super exciting and fun Monday and Tuesday we were off for a super SCARY and UNFUN Wednesday.
I have to say, never at the same time have I had to be so sure of something and so unsure of something in my life.
EVER.
We knew that Madeline would benefit from this surgery.
We knew it was the right decision.
But we also felt just really really mean.
Because while Madeline was having a good little baby time,
we knew what was in store for her.
This
DID NOT HELP.
So off they took her to Surgery.
And off to bawling my eyes out I went.
Surgery went really fast though!
why? Because God is Good.
They estimate about an hour and a half for surgery, but Dr. Marsh came by saying everything went great about a hour after she left my arms.
She had minimal bleeding and we were going to go and see her!
So off we went.
This is what we saw:
NOT PRETTY.
That first day wasn't fun.
But after we got to the PICU (pediatric intensive care unit)
Maddie did get to meet FRED BIRD who is the mascot for the St Louis Cardinals.
He looks like THIS:
Maddie was still coming out of her anesthesia......
and on Morphine.
So she will now have an uncomfortable feeling for her whole life when life size red birds come around.
But other then that she mostly slept and slept and slept that first day.
and that night she did not sleep much.
Not much at all.
But we understood, because it's not easy having your tongue reduced.
The next day we were off to our real room!
And a real room it was.
There was even an ICEE machine down the hall.... YAHOO! Well YAHOO for us, because no matter what happens it isn't a good idea to give a baby a frozen coke.
But on that first full day Maddie Played and Maddie swallowed milk that was squirted into her mouth and Maddie got her feeding tube out!
And we were angling to get outta there the next day!
WAY TO GO SUPER BABY!
WAY TO SHOW THEM!
WAY TO ROCK OUT TONGUE REDUCTION SURGERY!
In between Playing, milk and feeding tubes,
our new friends Abbey and Harrison came for a visit.
Harrison also has BWS and had his tongue reduction surgery about 8 months ago when he was the same age as Maddie.
He is now 16 months old, has awesome hair a wonderful tongue that stays in his mouth and can count his toes.
We think he is great!
Abbey was also wonderful and amazing and we are so soooo so blessed to know them! and we are forcing her to come and visit us soon so those of you who live by us will get to meet them someday soon!
And let me tell you...You will be blessed to know them!
(you can visit their blog HERE!)
So Continuing on.... Madeline drank her bottles all that day and all that night and all the next day!
And on that 2nd day Madeline smiled her happy baby Madeline smile and got up and rocked around on her hands and knees and we knew that our little sweetie was back!
and at 3 Dr. Marsh's wonderful nurse DeAnn came by to say "wanna go home?"
and we said YES! and we threw all of our stuff in a suitcase and ran away!
KIDDING.
First we filled up a two liter with frozen coke.
Then we had so say bye to our new FF (friends forever) Lydia & Danna and Deke.
And THEN we hit the road!
OUR FINAL INSTALLMENT: Part 3.....HOMEWARD BOUND! COMING SOON!
I have to say, never at the same time have I had to be so sure of something and so unsure of something in my life.
EVER.
We knew that Madeline would benefit from this surgery.
We knew it was the right decision.
But we also felt just really really mean.
Because while Madeline was having a good little baby time,
we knew what was in store for her.
This
DID NOT HELP.
So off they took her to Surgery.
And off to bawling my eyes out I went.
Surgery went really fast though!
why? Because God is Good.
They estimate about an hour and a half for surgery, but Dr. Marsh came by saying everything went great about a hour after she left my arms.
She had minimal bleeding and we were going to go and see her!
So off we went.
This is what we saw:
NOT PRETTY.That first day wasn't fun.
But after we got to the PICU (pediatric intensive care unit)
Maddie did get to meet FRED BIRD who is the mascot for the St Louis Cardinals.
He looks like THIS:
Maddie was still coming out of her anesthesia......
and on Morphine.
So she will now have an uncomfortable feeling for her whole life when life size red birds come around.
But other then that she mostly slept and slept and slept that first day.
and that night she did not sleep much.
Not much at all.
But we understood, because it's not easy having your tongue reduced.
The next day we were off to our real room!
And a real room it was.
There was even an ICEE machine down the hall.... YAHOO! Well YAHOO for us, because no matter what happens it isn't a good idea to give a baby a frozen coke.
But on that first full day Maddie Played and Maddie swallowed milk that was squirted into her mouth and Maddie got her feeding tube out!
And we were angling to get outta there the next day!
WAY TO GO SUPER BABY!
WAY TO SHOW THEM!
WAY TO ROCK OUT TONGUE REDUCTION SURGERY!
In between Playing, milk and feeding tubes,
our new friends Abbey and Harrison came for a visit.
Harrison also has BWS and had his tongue reduction surgery about 8 months ago when he was the same age as Maddie.
He is now 16 months old, has awesome hair a wonderful tongue that stays in his mouth and can count his toes.
We think he is great!
Abbey was also wonderful and amazing and we are so soooo so blessed to know them! and we are forcing her to come and visit us soon so those of you who live by us will get to meet them someday soon!
And let me tell you...You will be blessed to know them!
(you can visit their blog HERE!)
So Continuing on.... Madeline drank her bottles all that day and all that night and all the next day!
And on that 2nd day Madeline smiled her happy baby Madeline smile and got up and rocked around on her hands and knees and we knew that our little sweetie was back!
and at 3 Dr. Marsh's wonderful nurse DeAnn came by to say "wanna go home?"
and we said YES! and we threw all of our stuff in a suitcase and ran away!
KIDDING.
First we filled up a two liter with frozen coke.
Then we had so say bye to our new FF (friends forever) Lydia & Danna and Deke.
And THEN we hit the road!
OUR FINAL INSTALLMENT: Part 3.....HOMEWARD BOUND! COMING SOON!
Let me start this post with these words:
GOD. IS. GOOD.
We have been learning this on a whole new level for the past year.
And once again God has shown us how faithful HE truly is.
We want to thank everyone for their prayers for Maddie.... They were heard and answered!
If you asked anyone to pray would you please send them the link to our blog.... we want everyone to know that their prayers were HEARD!
I wanted to lay out our entire trip to St. Louis for everyone so here is the beginning!
After dropping big sister Ava off at Grandma and Grandpas
we left early on Sunday AM and headed down.
It was a great trip and we were able to stop at a cool place on the way called Charlie Parkers Cafe. It is a cool little diner in Springfield, IL. that was featured on the show "Diners, Drive-ins and Dives" on the Food Network.
After that it was off to St. Louis, MO.
And what a beautiful place Missouri is!
We were staying with our Blog friend Abbey's parents, Jeff and Ellen.
We hit it off with them instantly! They are so special and amazing! Ellen is an amazing cook and made us yummy food everyday.... even homemade crackers! YAY!
and Jeff and Sam had alot to talk about! Jeff used to own a company that manufactured parts for the power industry... and Sam now works with someone that used to work for Jeff!!
God is funny like that! :)
They were so accommodating and words cannot express how grateful we were to have them.
God orchestrated all of this, especially our stay with them. I know He has a special reward for them one day!
On our first full day there we were able to visit downtown St. Louis.
It is a great city and the Arch is AMAZING!
After our visit downtown we had the consultation with Dr. Jeffery Marsh who is a world-renown plastic surgeon. He has done over 250 tongue reduction surgeries over the years, so we knew we were in the right hands!
While Madeline's tongue was not as thick as some other tongues he has seen, he still recommended that Madeline have the surgery... so that was it! We were on our way. Surgery was scheduled for Wednesday at 8:30am and that was that.
After our appointment we were able to meet some new friends Deke and Danna and their sweet little girl Lydia.
Lydia is 3 years old and also has Beckwith-Wiedemann Syndrome. She was scheduled to have surgery the same day as Maddie!
The next day we had our appointment with the Speech Therapist... she was VERY impressed with Madeline and told us that her speech is at a 9-12 month level... she is ahead! YAY!
After that we met our new friends Deke, Danna & Lydia at the St. Louis Zoo which is wonderful (even though it rained... i mean downpoured!)
Then we went back to Jeff and Ellen's for a good nights rest before surgery.......
Coming up next..... Madeline & the smaller Tongue....
GOD. IS. GOOD.
We have been learning this on a whole new level for the past year.
And once again God has shown us how faithful HE truly is.
We want to thank everyone for their prayers for Maddie.... They were heard and answered!
If you asked anyone to pray would you please send them the link to our blog.... we want everyone to know that their prayers were HEARD!
I wanted to lay out our entire trip to St. Louis for everyone so here is the beginning!
After dropping big sister Ava off at Grandma and Grandpas
we left early on Sunday AM and headed down.It was a great trip and we were able to stop at a cool place on the way called Charlie Parkers Cafe. It is a cool little diner in Springfield, IL. that was featured on the show "Diners, Drive-ins and Dives" on the Food Network.
After that it was off to St. Louis, MO.
And what a beautiful place Missouri is!
We were staying with our Blog friend Abbey's parents, Jeff and Ellen.
We hit it off with them instantly! They are so special and amazing! Ellen is an amazing cook and made us yummy food everyday.... even homemade crackers! YAY!
and Jeff and Sam had alot to talk about! Jeff used to own a company that manufactured parts for the power industry... and Sam now works with someone that used to work for Jeff!!
God is funny like that! :)
They were so accommodating and words cannot express how grateful we were to have them.
God orchestrated all of this, especially our stay with them. I know He has a special reward for them one day!
On our first full day there we were able to visit downtown St. Louis.
It is a great city and the Arch is AMAZING!
After our visit downtown we had the consultation with Dr. Jeffery Marsh who is a world-renown plastic surgeon. He has done over 250 tongue reduction surgeries over the years, so we knew we were in the right hands!
While Madeline's tongue was not as thick as some other tongues he has seen, he still recommended that Madeline have the surgery... so that was it! We were on our way. Surgery was scheduled for Wednesday at 8:30am and that was that.
After our appointment we were able to meet some new friends Deke and Danna and their sweet little girl Lydia.
Lydia is 3 years old and also has Beckwith-Wiedemann Syndrome. She was scheduled to have surgery the same day as Maddie!
The next day we had our appointment with the Speech Therapist... she was VERY impressed with Madeline and told us that her speech is at a 9-12 month level... she is ahead! YAY!
After that we met our new friends Deke, Danna & Lydia at the St. Louis Zoo which is wonderful (even though it rained... i mean downpoured!)
Then we went back to Jeff and Ellen's for a good nights rest before surgery.......
Coming up next..... Madeline & the smaller Tongue....
