Wednesday, April 12, 2006

I wanted to try and post multiple pictures. To see these pictures larger, click on each one. The first one is when Sal got to hold Jaden for the first time since right after he was born. He was very nervous. There are lots of lines and it gets a little tricky handling him. He did wonderful and held him for along time. As you can see Jaden in the 2nd picture was looking at his daddy alot. This was the most we have seen him with his eyes open. They also had a lady doing music therapy in our room today. She played the guitar and indian flute for each of the babies. I think Jaden enjoyed it. He went to sleep really well. It was so sweet. I got to hold him again when Sal was done :-)

The next 2 pictures are from the RMH. This place has something for the kids almost everyday. They have crafts, cooking time, therapy dogs come to visit, movie's in their home cinema and this inflatable night. The kids had so much fun. Volunteers come and play with the kids. They got so sweety and dirty and had soooo much fun. Just wanted to show you all a little what they do around here for the kids. It is wonderful.

Jadens temp is down a little. He over all is doing good. He was still pretty crabby today. I think the respirator tube is making him really crabby. I keep telling him that they tried to take it out but he did not want to do the work and breath on his own. Tomorrow we will definitly hold him alot more. I am more nervous about the surgery now that it was postponed. Hopefully Friday is a go. I need to get on with it.

We will talk to you tomorrow. Love, US


Stacy said...

Hey guys! Those pictures are great! I'm glad that you finally get to hold him some! He is a fighter. I can't beleive all of the stuff the RMH has for the kids to do. That truly is a wonderful place.

Take care and enjoy your time with Jaden. Every minute is precious! To you and to him!

Luv, Stacy

Beth said...

The pictures are great hope all goes well. Your in our prayers.

Karen said...

Awesome pictures! So glad that Sal finally got to hold him, and it looks like the kids were having a blast....How lucky for everyone that RMH exists! We had no idea what a special place it was....

Lots of love and prayers headed your way.


Kurt and Mattie Krueger said...

Awesome Pictures!

Great Mom and Dad ....Your doing Awesome jobs !!

We so happy they have a place like RMH , what a special person it must have been to think of starting such a great place. All the blessings it has been for so many lives.

I bet the music therpy is a welcome sound to the little ears. Just think of all the different sounds they hear each day with all that is going on around them.

The best is Mom and Dads loving voices.

We are so happy you all get to share this as a family. We are sure Jaden enjoyed it.

See you later today,

Dad and Mattie

Kurt and Mattie Krueger said...
This comment has been removed by a blog administrator.
Steph and Mitch T said...

"Because of the Lord's great love we are not consumed, for his compassions never fail. They are new every morning; great is your faithfulness." Lamentations 3:22-23

I was thinking about this verse this morning as I woke up and *nearly* ran to the computer to check for an update (my new morning ritual as I grab a Pepsi--in a can!--and blink through sleepy eyes to read and cry with you). It reminds me of one of my favorite old hymns from growing up in church:
"I know who holds tomorrow

I don't know about tomorrow
I just live from day to day
I don't borrow from its sunshine
For its skies may turn to gray.

Many things about tomorrow
I don't seem to understand
But I know about tomorrow
And I know who holds my hand.

I don't worry o'er the future
For I know what Jesus said
And today I'll walk beside Him
For He knows what is ahead."

Praise God for answering prayers, and thanks be to Him for new mercies each morning! I must admit that I am sooo worried about the surgery on Friday. Sometimes I think the pain is too much to bear--and it isn't even my pain!! Then I remember that Jesus has asked us to cast our burdens on him. So my prayer is that you guys are able to do that and to let him carry you. (((Hugs)))

Love ya,
Steph & Mitch T

p.s. Liz Schultz saw the pictures this morning and loved the one of Ashley holding Jaden. She said that's the happiest she's seen Ashley in a while! =)

Kelly said...

GREAT pics! You all are beaming. It's awesome to be able to share your journey and "see" it too. Thanks for keeping us posted.

Anonymous said...

Gosh, it's great seeing the pictures of Jaden with everybody. I'm glad your able to stay at the Ronald McDonald house and that they have such a great support for families there. I know I'll be saving my pop tabs long after your stay is done. Ethan looks like he was having a blast in the jumper. It's nice to hear that they have different people coming in for therapies in the hospital. I remember when Haley was in and they had a therapy dog that come right up in the bed with the kids. Little things like that are great for a change of environment. So the surgery is still tommorrow right? In the morning? They expect Jaden to stay in the hospital how long after that before he can come home? Is Jadens condition hypoplastic heart syndrome? I don't know if I've ever heard for sure what he was diagnosed as. Okay, give him lots of kisses & cuddles for those of us who can't be there! Megan

Angela Hary said...

Great pictures! That RMH is really impressive! I was so touched by all of the details they have brought together to help families like that.

Hang in there! I'm sure the waiting is the hardest part.
Oh, I read this and thought of you:

"When you come to the end of all the light you know, and it's time to step into the darkness of the unknown, faith is knowing that one of two things shall happen: Either you will be given something solid to stand on or you will be taught to fly." -Edward Teller

Hope to be able to come and visit again soon!!

Steph and Mitch T said...

I'll answer your question about Jaden's condition Megan! It is called Hypoplastic Left Heart Syndrome, and is commonly abbreviated HLHS.

I have read lots of encouraging stories about little babies with this condition. One that really stands out in my mind is a baby who was born and not diagnosed until he was 10 days old. The doctors at the hospital were not very encouraging and suggested "comfort care" for the infant...aka take him home and let him die. She did that for 6 days and he hung in there, eating from a medicine dropper, and finally she couldn't take it any more and took him to another hospital for a second opinion. She discovered that he had a 75% chance of survival and realized that 75% is better than 0%!! They did the first of three surgeries when he was 18 days old and he is alive and healthy today as a 9 year old. I LOVE that story, because it fills my heart with so much hope.

Steph T.

Anonymous said...

Thanks Steph T. I get curious about this kind of stuff and if any of you want more technical information on what HLHS is this site is really good at explaining it.

Anyway, Steph & Sal & Family take care of yourselves!
Megan :>)