Tuesday, April 25, 2006

I am posting a few pictures. The first 2 are of the kids holding Jaden from this weekend. Ethan would not give him to any of us to hold. It was so cute how much they both cared. The 3rd is Jaden's "guardian angel" nurse Steve. He we believe was put in our path to give the love and support that Jaden needed to help him get through this. The 4th is what Kelly said looked like Dennis the Menace hair. How cute. And the last is of grandma holding Jaden. How cute they all are. (I have been having technical difficulties so hopefully these will post. If not check back tomorrow).

Twila from church came to visit today and was the first from our church family to hold him. Thank you Twila for the wonderful gifts. Jaden already read the book you gave him many times. He is a great story teller. Mom and Kelly came tonight and had dinner with me. They both enjoyed holding Jaden with all of the lines and other stuff gone.

Jaden's x-ray did not go as I had hoped and prayed for. When he swallowed breast milk, a little of it got into his airway. When they gave him a thicker consistnecy, it went fine. What happens is because he has to breath so much faster (which makes it harder), his brain does not tell his flap that protects his airway fast enough to close with the faster flowing breast milk. So for now he has to have breast milk mixed with rice cereal (to thicken it) and then also with fortifier (which is powder formula) to help bond the breast milk and rice cereal together.

So for now, he will not be able to breast feed. This makes me extremely sad :-(So we need lots and lots of prayers so that he is able to get strong enough to be able to close that flap so he can nurse from his mommy. It is possible but could take a very long time. I told the doctors that he is going to study hard and learn it really fast so he can get an "A" on his exam and start nursing.

I will let you know how tomorrow goes. Love to you all, Steph

14 comments:

Steph and Mitch T said...

Hey there Steph! It was so neat to see all the pictures of everyone. I think the picture of Mama Rose is my favorite. =) I agree, that hair is something else!! I'm glad you got a picture of Steve. It was great getting to meet him and see him with Jaden.

(((Hugs))) I can only imagine how sad you feel about breastfeeding. I want to encourage you though. I read a story yesterday about a woman who was not able to breastfeed her baby at first, but finally at 3 months he was able to start nursing (she had pumped the entire time). There are a couple of message boards at ivillage for breastfeeding support (including one for breastfeeding and supplementing). I'll post the link to the bf'ing board and I'll bet you'd be able to find other women there who understand what you're going through: http://messageboards.ivillage.com/iv-psbreastfeed?redirCnt=1
They also have another board for heart babies, and I saw a couple of hlhs babies there. I also did some research there and saw several stories about women who overcame trials to go on and breastfeed their babies. Their babies, like Jaden, had to have high calorie formula, tired easily, etc. Sound familiar? http://messageboards.ivillage.com/iv-ppheartdfcts Sorry that blogger won't let me make those links.

Love ya dear. Keep lookin up!!

Steph T

Steph and Mitch T said...

Ok, here is one thread in particular with fantastic stories...
http://messageboards.ivillage.com/n/mb/message.asp?webtag=iv-ppheartdfcts&msg=12326.1

Steph and Mitch T said...

Ok, so I'm not trying to be a blog hog... =) But this story absolutely amazed me. This woman had to overcome A LOT just to get her baby to drink from the bottle without vomiting everywhere, and she says that he is nursing now...incredible!
http://messageboards.ivillage.com/n/mb/message.asp?webtag=iv-ppheartdfcts&msg=12351.4

Anonymous said...

Yeah for the pictures!!! Haley will be excited to see them. Every now and then she gets sad and says she doesn't want our baby to have surgery. (For those of you who don't know Haley is Ashleys age and we are expecting a baby in August.)I reassure her that so far ours is healthy and won't need any operations. Just goes to show, those little kids are always thinking. Steph I know how important breast feeding is for you but at least for now we can be thankful that his "plumbing" is hooked up right and he can at least drink from a bottle. We'll take our blessings however we get them. With all the miraculus steps Jaden has been taking I'll pray that nursing is a soon to come one. Thanks again for all the pics! Tell Jaden and everyone else Hi from me and Haley! Megan

Krista said...

Hi Steph,
Those are somre GREAT photos!! You can just see the love. Ethan and Ashley look like the best Big Brother and Big Sister. I bet they can't wait for hom to come home. His hair si too funny. My kids never had much until they were about 1. The picture of Jaden with his Grandma, and her big smile is just priceless!! I think you are right about Steve too. Just form meeting him that day Stacy and I were there, you could tell what a loving and caring nurse he is and that he is there because he truly loves his job.
I hope that you have been able to ge tout and enjoy some of the sunshine:) We got a tent from one of the nurses Ken works with and put it up in the back yard and the kids are haing a great time with it.
You are doing such a great job keeping everybody up to date with all that is going on. I love to check here a couple times a day to see how things are going.
Keep up the great work and Jaden will be nursing before you know. I know that the pumping gets old but he is still getting so much nourishment form you!
Have agreat day!!
Love,
Krista

Krista said...

Steph,
I just checked my own blog and saw that you had been there. I am so glad that I can be here to support you guys. It also means a lot to me that with all that you have going on that you still have time to check there too. Love you too.
Krista & Family

Kurt and Mattie Krueger said...

Awesome pictures!!

The children sure loook like they are into baby brother....

I too can not wait to hold little Jaden. He is a cutie.

I am sure Jaden is at the head of his class, and will get "A+".

I look forward to seeing you all again in June, Fathers Day weekend at the cabin.

Thoughts and prayers,

Mattie

auntie kelly said...

Well, last night Jaden officially initiated me. I got the honor of changing a dirty diaper and then Jaden was so proud and showed me how powerful his, ahem, plumbing as Megan put it, is. Needless to say the entire bedding needed to be changed. That's okay though. It was great to hold him and then see him with his eyes (and mouth-whaaahhh) wide open! Keep reading the manual on how this procedure goes Little Jaden and get an A+! We love you little man!

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

=D OK, borderline obnoxious here. Here is another awesome HLHS story (breastfeeding too):

http://families.hearts-of-hope.org/Joseph/welcome.html

This one is the sweetest so far. They just keep getting better. Take note that this family had 10 previous heart healthy children!

Steph T

Krista said...

Hi Steph,
Just wanted to say hey and see how things are going. Are the sleepovers making the week go a little faster? Keep up the good work!
Love,
Krista

mama rose said...

Day after day I have seen some wonderful miracles---all of you who have been reading, commenting on the blog and supporting Stephanie and Sal in all the ways you have been doing, are also wonderful miracles. Do you know how you all have given them strength and hope by what you do? And for them to know that people care enough to take the time to check Jaden's progress is like the fuel that keeps a vehicle going. You are all held in my highest esteem.

As I see all the little infants in the hospital fighting for their lives and knowing now what families go through, really opens my eyes. I cannot believe how easy it is to take for granted "bringing a healthy baby home". Now when a baby comes home in a healthy state, or when I see a healty kid playing, I will never see them again in the same way.

Every story from the many parents that are taken out of their homes because of complications with their babies are each heartbreaking. One of the first days I was at the Ronald McDonald house, a lady was talking about all the conditions that her baby had, with very little hope of change - - - the Doctors saying that they should just let her baby die... yet she says no, that she wants to fight for her baby no matter what she will have to go through in raising him - - she was so strong, had so much faith... wanting so badly to have her baby to just be able to live.

When I think of all the things that have been going on in Jaden's body, and all the things that are working,and just the working of the body itself ... just begins to show the Infinite Mind of God in HIs creation. It is so humbling.

The doctors told Stephanie that operations range from 1 to 100 in their extensiveness or difficulty. Jaden's was a 100. Glad we didn't know that before. HOwever,Jaden, with all of that, was called a star.

So, little Jaden, keep up the good work! There is a family that wants to be put back together soon.

I love you little man!!!
Grandma Rose

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