Joshua is 9 weeks old today, but he was born at 31 weeks, 5 days. So, I guess his adjusted age is a ripe old 5 days. :)

He was taken off of his oxygen flow last week. It was very minimal; .1 flow at 30%. I was told room air is 21%. He did okay, but then had intermittent fast breathing. It wasn't causing his sats (oxygen saturation) to go down, and he was still able to try to drink from a bottle. The last few days it's been getting worse and last night his sats just kept dipping and his respiration would get as high as the 90s. They don't want to see him higher than 60. So, he went back on the oxygen this morning. They don't know what is causing it. The last time, which was about a month ago, they found out he was anemic. He received some red blood cells and all was well. That's not the case this time. The doctors have no answers. So, not it is looking like he will be on oxygen for an undetermined length of time. And if he doesn't start drinking better he will get a g-tube.

Please pray for my little one. I want him to be able to breathe easy for his sake, but also for ours. I want him to be able to eat. I need him home.

_________________
Debbie, mom of Lizzie (2 yrs) and Joshua (6 mos corrected age.-DS)

For you created my innermost being; you knit me together in my mother's womb. Psalm 139, v 13
And will you succeed? Yes indeed, yes indeed! Ninety-eight and three quarters percent guaranteed.--Dr. Seuss

Thinking of you and praying for the best through all this! I know how unattainable it feels, but he will get home soon! Keep us posted!

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Aimee, Mom to Piper (5/11/09)
http://aimeesbowlofcherries.blogspot.com

Praying here!

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Karen- Mum to the world's cutest baby!! Ben

Talitha had a very rough first 6 months with heart issues and she was also tube fed. She had a nasogastric tube for her first 9 months and then got a g-tube which we finally said goodbye to about 12 months ago.

Does Joshua have any heart issues? I will pray for him.

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Karyn
Mum to Nikki (Jul 89), Stefanie (Sep 96), Joel [June 98] and Talitha (DS) (Nov 05) AVSD/PDA repaired 23 March 06

"I will praise You, for I am fearfully and wonderfully made; Marvelous are Your works, and that my soul knows very well." Psalm 139:14

Praying for your sweet little guy and your family.

_________________
Keely
Mom to:
Audrey 9
Finnigan 6
Dorothy 3

Many thoughts and prayers you way.

_________________
~Christine~
Mom of 6
Brandon ADD/ADHD 17, Chelsea 14, Connor 12, Logan 6, Cody 4 & Austin 1 ( DS & Hirschsprungs pull through 12/8/08 )
http://www.caringbridge.org/visit/austinpaquin

Prayers for you and your little guy~

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Sarah
Mommy to Our little Rock Star Braeden
Born 4-12-07

Debbie....Praying for Joshua.....Praying for you too!
Give him a kiss from Robert and his new friends at Downsyn!
Hoping it wont be too long before you get Joshua home!

_________________
Linda & John
mom to Hannah Kate (Age 12 ), Robert (Aged 6 - DS)


First day at school

I don't know if I am replying correctly, but I wanted to let you all know that I finally got to see Joshua tonight! He is so cute!! Of course I knew that already, but he's just so cute! He continues to gain weight and is even getting those little dimples on his hands. :) He is back on his oxygen, which totally stinks. The doctors aren't really sure what is going on with him. He does have a PFO (hole between the atria) but they have no plans to repair it. They think it might be causing too much fluid to build up, though, and he is now on a diuretic. He's had one before but it didn't help much with the breathing, just the eating. If this doesn't work, they are going to check to see if giving him medication for reflux will help.

I still don't like it all. But, i got to see him, and I feel so much better. I feel like I can handle all of this again. :) Thank you for your prayers! You are all wonderful!

_________________
Debbie, mom of Lizzie (2 yrs) and Joshua (6 mos corrected age.-DS)

For you created my innermost being; you knit me together in my mother's womb. Psalm 139, v 13
And will you succeed? Yes indeed, yes indeed! Ninety-eight and three quarters percent guaranteed.--Dr. Seuss

Continued prayers for Joshua and your family!!


Ibby

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Ibby
Wife to Tim- 22 years. Mother to Maggie,21; Bridget,19; Kevin,17; Sean,15; Daniel,12; Catherine,11; Robert,8; Emily,7; Maria,5; Hope, 4, AJ (Ds) June 14, 2006

http://www.onetruemedia.com/shared?p=26012b09b29bd00fe629cb&skin_id=0&utm_source=otm&utm_medium=text_url

Emerson did that a lot....... (not one with DS...but my premie) it was harder for him at night and we were one and off o2 forever!!!!!!!!!! at least three weeks!!!!!!!!!!!

about the same numbers you were talking about........ finally I just said keep him off! Unless sats were lower than 89....... cause I was irritated........ at them and him......

I am not recommending this....... but I really felt they were too quick to intervene and as bad as this sounds I could not afford the daily cost of us being there a minute longer (it was about $500 per day) but they were absolutely sure his breathing was not causing his heart to slow/stop....and find out 9 months later it really was not......

they would not consider sending mwe home with O2..till he was three months old gestationally.......so I said after the fifteenth time they took him off......I SAID NOT to put it back........ and after a few days with the high breathing for a few periods at night with a little drop in sats it went to as close to normal as he was ever going to get (he has other issues) His sats drop cause his heart slows...... he wore a monitor for 10 months and now only wears it at night to alert me to wake him up and check him........

I would look with ds to make sure there are no other issues causing this. They told me Emerson's was "wussy white boy syndrome".....later to find it was a chromosomal anomally.....just not DS (he is partially missing some parts of his 9 and 12 in some...but not all cells)

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Jane
mom to
Colin Miguel (11/19/00) DS
Devon Richard(4/13/01) DS & Autism
Melea Isabelle(2/13/02) DS
Adrian Elliott (7/04/03)
Eliza Marisol (5/15/04) DS
Miranda Olivia (2/1/05) DS & Partial Complex Seisure Disorder & iratractable epilepsy
Jordan Alexander(3/17/2007)
Emerson James (1/08/2009) 33 week preemie


wife to the best & greatest guy Eric




http://princessgrumpy.blogspot.com/
read about the daily adventures of Princess grumpy and her special siblings and their daily adventures

http://thegrumpyfamily.blogspot.com/
the family blog of our unique & special family

So glad you got to see him. Hoping and praying they get things figured out soon--

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Maresa,
Mom to Alisa (10-29-2008) DS, complete AV canal repair on 3-6-09