Monday, November 10, 2008

November 10, 2008 - UPDATE

We have finally decided to post information to a blog so that people could check the blog when they wanted to find out the latest. We will do our best to post updates regularly, but we are new to "blogging" so please be patient! :)

A week after we brought Whitney home from the hospital (when she was 11 days old) she became very sick with a fever of 102 degrees and had to be hospitalized for 5 days. During this time she became very weak and stopped nursing and eating altogether. We tried pumping and feeding Whitney by bottle (to know how much she was taking in) but ultimately she was just too weak and we had to insert an NG (nasal gastric) tube to feed her. When we were discharged from the hospital, they advised us to add powdered formula to breast milk for added calories to try to get Whitney to gain as much weight as possible before having open-heart surgery. Her little heart is working so hard all of the time and burns all of the calories she takes in just to exist so it made sense that we would add these extra calories. Unfortunately, it took almost 7 weeks before we realized that the formula was making her sick and that her body could not handle or process the extra calories. She has acid reflux and would get sick with every feeding. We try each time to feed her by bottle and we put whatever she does not take into her feeding tube each time. Whitney would cry and squirm in pain each feeding and would be uncomfortable and often times in pain even after the feeding was finished. 2 weeks ago we went to the doctor and discussed trying to switch her to formula only, in case there was something in my breast milk that was causing her discomfort. We gave her 3 feedings of straight formula and I have never seen her as sick and in pain as she was from this "experiment". This confirmed that the formula was causing her to feel sick and for the first time since before she was sick and hospitalized, I gave her straight breat milk (without added calories from powdered formula added to the breast milk). Within a day she was a new baby! She felt so much better, looked so much better and we quickly realized how hard it had been for her to have formula, even in small quanities, for so many weeks. Since this "experiment" with formula only, Whitney does not take much at all by bottle, it is as if she is scared and protecting herself from what she figured out was causing her so much pain. We are slowly but surely working with her to gain her confidence that it is ok to eat! This is difficult, however, because of the length of time that we had been adding the extra calories with formula and also because of her heart condition. We are hopeful that after she recovers from the heart surgery that she will have more energy and endurance to be able to eat and also that she will not have to battle trying to breath and eat at the same time. Her breathing is very labored and should be much better after she recovers from her surgery.

Whitney's open-heart surgery is scheduled for Monday, December 1, 2008 at Riley Hospital for Children in Indianapolis. Her surgeon will be Dr. John Brown. We are looking forward to and dreading this surgery all at the same time!

In the mean time, we are just doing the best we can to balance life with Anne (our two year old) and taking care of Whitney. Anne has handled all of this very well (considering she now has to share the attention of her parents, grandparents, aunts, uncles, friends, etc...) We are very lucky! Our dog, Maddie, however, has not handled everything quite as well. We actually had to take her to the vet a couple of weeks ago for a multitude of reasons and she is now on an anti-anxiety medicine and is feeling much better :)

3 weeks to go until the surgery! Please keep Whitney in your prayers!!!


Ellen said...

We love you, Whitney.

Rebecca said...

You all have been in our prayers! Thanks for doing the blog, as we have been wondering how Whitney is doing, yet don't want to burden you with more emails to answer. It's amazing that surgery is just around the corner. She will be in such good hands, Dr. Brown is one of the best in the country. Hugs to all of you, especially Anne and Whitney!

Anonymous said...

Laura, love the site! Great idea to keep us all updated.

Happy Birthday tomorrow!

Anonymous said...

Happy Birthday Laura!
Thanks for the very are in our prayers
and we have put Whitney's name
on the Carmelites in Buffalo, NY and on Seton's prayer list
and ST. Mary's in N.Vernon too.
I would like to keep in touch
and see if I can do meals or help
with Anne.
I am so proud of you all..
I send lots of love, God bless you.
Aunt Kathy & Uncle Dick

marge and jim said...

Thanks for keeping us all up on things in Indy. The pictures are wonderful. We have added Whitney's name to the Book of Intentions at St. John's here in Oxford, we are all praying for her and her doctor. Love to all Marge and Jim

Anonymous said...

Our family is praying for Whitney, and your family. We know that God has a huge blessing in store once you complete this trial! The girls are beautiful.
Marsha Bearden

Anonymous said...

you know how much time i spent in riley as a patient and 17 years later i am sitting here writing to you. my live was saved the minute i walked through those doors. had it not been for the wonderful specialists and surgeons i would not be living and training for a half ironman. 24 surgeries and a train track on my stomach later, i have lived, loved and seen the world. you are in the best hands in the world, take it from a riley kid. all my love for you, mike, anne and your little fighter, whitney.

colleen mcgovern

Anonymous said...

I am so happy that you started this blog! I am always wondering how your family is doing and how little Whitney is feeling. I will be following along and saying extra prayers on Dec. 1st!

Love to all 4 of you,
Laurie, David & Emma

ps. Nov 12 is my brother's bday also! :)

Anonymous said...

Oh thank you for the email about this blog! You all are always in my heart and prayers. You must be so proud to have such a beautiful family. Finally getting to see you all eases my mind; along with the detailed update. I will continue to pray for you all, and if there is ever absolutely anything that I can do, please don't hesitate to let me know. I love you dearly!!!

Anonymous said...

Be assured of our prayers for all of you, even Maddie! Thanks for sharing this with us.

Anonymous said...

I am friends with Lesly Fleck-Lytle and she sent me your blog. I am a speech language pathologist who has had the pleasure of working with many wonderful children with Down Syndrome. I also have a special place in my heart as my youngest nephew Alex also has Down Syndrome and is an amazing and successful teen! I will say a prayer for you and your family and wish you the best.

Anonymous said...

We are thinking about you guys and praying for little Whitney today.

Lots of Love,
Laurie, David & Emma Stutes