Thursday, April 27, 2006

Gonzalez's Heart

Wednesday night Tammy, mom and Robyn came to visit. We had a little party in Jaden's room. Mom thanks again for the wonderful presents. The color coordination was wonderful. We stayed until around 11pm or so. Jaden was not feeling that well and when we tried to leave he would cry so it made it really hard. We then raided the fridge at the RMH and then Robyn and Tammy had a sleep over. We did not get to bed until 12:30am. We all had fun. Robyn is spending the night again tonight. This does make my week go by a lot faster and it helps me to get my mind somewhere else.

These last 2 days have been a little difficult for me with Jaden. He has not been drinking hardly anything from his bottles. We have tried 3 different nipples and have been thickening the breast milk but have a really hard time because the protein in the breast milk does not allow the thickener to stick. So we are having some trouble with that.

They also want to send Ears Nose and Throat in tomorrow to do a scope of his vocal cords and folds.. They are worried since his voice is still so soft and he is not eating well that maybe he has some damage done to his vocal folds. So we have hit a new set back as not only does Jaden need his milk thickened, the breast milk not adapting to the thickener, him having a hard time figuring out how to use the bottle, but now also his throat stuff. I have asked for somewhat of a time frame until we might get to leave and they said a minimum of 2 weeks. (I had to ask many people before even getting this answer, so I am thinking that might mean longer then shorter). Of course they are not sure how long until we can get everything figured out but it will be awhile. They said that if nothing major is wrong with his vocal stuff, that it could take up to 6 months for him to have it all normal and be able to hear him well. Of course this means possibly 6 months before he may be able to eat normal. I will let you know the details tomorrow from the test.

I also have a cool surprise I am working on for the blog. It will probably take me a few days but keep checking back. I am hoping it works and it will be really cool for you all. Lets just say that it may help you feel like you are able to experience Jaden better. I know this is a teaser but it is something exciting for me to work on and keep my mind on other things.

Hope you all have had a good week so far and I will write more tomorrow. Love you all, Steph

14 comments:

Cindy See said...

Oh Stephanie, I am so sorry for this set back. He has gone thru so much but he is still The Super Star! God's hand is on him and there is a reason for what is happening....I know that may not be comforting right now, especially since I can "hear" the pain in your voice. {{{HUGS}}}

I will continue to lift you all in prayer.

Also, don't leave us hanging!! I'm not very patient, especially lately!! hahaha Can't wait to see what you are up to! :)

Kristin said...

Steph,

We both know that everything is in God's hands and will happen in His timing. I know it can't be easy to sit back and wait, but rest in His peace!

Your boy is beautiful, and seeing the pictures of Ashley and Ethan holding him was just magical :)

A note for Steph T. (since I know you'll see this!)... I can't speak for Steph, but I think it's okay that you've been a "blog hog" ;)

I will definitely keep praying!!

~Kristin Loucks

Kurt and Mattie Krueger said...

Hi Stephanie!

I am so glad Robyn can be with you tonight. It sounds like today has taken a toll, you need to be able to rest as much as you can. Having big sister there can be a wonderful thing for both of you.

You have been through a lot physically, and mentally. Please take care of you....

Please give little Jaden a hug from me.

Love,
Mattie

Steph and Mitch T said...

I'm praying for Superstar Jaden! I'm praying that God will give the doctors answers...especially answers that they didn't expect. ;-)

Love ya,
Steph T, aka "blog hog" =D

Krista said...

Hi Steph,
It really sounds like you have had a rough couple of days, but there is a plab for the "Super Star" so try and be patient and let it work itself out. With him having the ventilator it is a common thing that this can happen and there are ways to treat the vocal folds. As he gets stronger each day hopefully his little muscles will too andhelp him with his eating. You are still providing the milk that he needs and that is so important for both of you.
That is great that Robyn could stay with you! sounds like that party was a good time. I bet it was nice for Tammy to get away for a bit too and have some girl time.
Keep your chin up you are truly doing a tremendous job and remember to take care of you!! He will need you when it is time to go home.
Love,
Krista

Steph and Mitch T said...

Ok, a quick internet search turned up a thickening agent that is designed to thicken breastmilk, maybe it would be a simple suggestion...the brand name is called "Simply Thick Instant Food Tickener--Nectar Consistency." A search on this specific product revealed that the problem of thickening breast milk is very common, and that this has been a solution, especially in getting premies to eat!

Steph T

Steph and Mitch T said...

Hi again! Here is an article that is a case study of twins who were given the Simply Thick in expressed Breast Milk. It looks a little more "scientific" than just a message board post. *wink*

http://www.simplythick.com/article_images/Case_Study_Sacred_Heart_v2.pdf

The official website for the product is www.simplythick.com

I hope that helps!!!

Steph T

Steph and Mitch T said...

Ummm, that got cut off, so I'm going to try posting again:

http://www.simplythick.com/article_images/Case_Study_Sacred_Heart_v2.pdf

Steph and Mitch T said...

You know what, I'm still worried that you won't be able to see it. You can click on "Show original post" and that should work, but just to be sure, I'm going to email you the document. LOL

Steph T

Steph and Mitch T said...

I found a pharmacy in the cities that stocks SimplyThick! It is at
Health East Professional Pharmacy
Woodwinds "The Lodge"
5200 Fairview Lakes Boulevard
Woodbury, MN 55125
(651) 326-0770

Just in case...

Steph and Mitch T said...

Hey Steph, I want to stay ahead of the naysayers (hehe) here and say that babies do not form allergies to breast milk, but they can be allergic to things that mom eats that can be passed across. I discovered that my doctor's son (born at the same time as Zeke) had allergies and she continued to nurse. She had to eliminate lots of things from her diet to figure out what worked. I was amazed that she was so commited to making nursing work out for them. The most common allergens are milk, soy, peanuts, and eggs. Her baby was also allergic to corn, I believe. Just something to keep in mind!

Steph T

mama rose said...

mama rose said...

Steph T. - - - You are awesome and I get such a kick out of you. You are such a great friend to Steph in all you are doing.

And Steph T.... we get to see you over and over again each time you write. :)) You are so cute. Thank goodness for that. hehe

Take care sweetie

Rose

mama rose said...

It was really nice to hang out with "the girls" Tammy got there early and was rocking Jaden. She looked so "at home" holding Jaden. Robyn and I trailed in. It was just a really nice time for us all to just sit there with Jaden. Of course we had to check in on the neighboring baby who doesn't have a mommy, daddy and friends coming to rock, hug or love him. His name is JaBarrie. I accidently called him Jamboree. He could really use some prayers. Where is the LOVE for him.

Well better go... started getting too sad and frustrated thinking about him. He is a beautiful blue eyed boy. Remember him in your prayers.

mama Rose

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