Thursday, March 13, 2008

The Latest on Little Rotten!

Sorry it's been a while since our last update but (as you can imagine) life is very busy around here! Annabelle went to the pediatric cardiologist last Friday and had a good visit. Her pulse ox was exactly where it was when we left the hospital (86) and her echo showed good function. We go there every other week to keep a close eye on everything.
We also saw the pediatrican last Wednesday and again this morning. Annabelle weighed 8lb 5 oz last week and a whopping 8lb 15 oz today!!! She gained 10 ounces in one week! That is very reassuring when she has such bad reflux...I wonder how she's even managed to gain an ounce much less 10! The pediatrician told me last week that she should gain about 1/2 an ounce a day so I was praying for 8lb 9oz today but once again God supplied more than I ever asked.
So, in between the medications, feeds, reflux, pumping, doctor visits and poopy diapers, Wyatt, Annabelle and I went for a nice walk outside today. She slept the entire time while Wyatt rode his bicycle around like a little speedster. I knew that he had been riding a lot with my dad in Kiawah but he has grown up so much since we left for MUSC. He barely fit on the bike at Christmas and now rides it like a pro! It was so nice to get outside for a bit since that is about the only place other than the doctor's office that we are going.
We are still adjusting to these feeds...Annabelle hasn't improved much with her bottle feeding. She tries to take a bottle 3 times a day (out of the 8 times that she is fed). She usually takes about 10-20 cc's each time which is less than an ounce. Her total feed is 70 cc's so that's not near enough to sustain her. Our prayer right now is that she increase her feeding from the bottle. The g-tube definitely has its advantages (medications are super easy to give her) but we would love for her to be able to nourish herself, too. Please join us in praying that her strength and stamina increase to support her trying to eat. Right now it is just too hard on her to try to eat very long. We were told that her heart is already working hard enough just to beat but to add the stress of eating is like running a marathon to her. God has taught us so many lessons in patience.
Thank you all for your comments, emails, calls, meals, gifts and so much more! It is so good to be home and be welcomed home by our Christian family and friends. We are blessed beyond words.


marty said...

Wonderful update!! So glad you are ALL doing so good. I love the pictures..esp. the one of Wyatt and Annabelle both smiling. Now that could win any picture contest!!! I'll continue to pray for Annabelle's eating and God will take care of that when the time is right. My love to all of you. May God wrap His Arms around you today.

Lindsay Dean said...

Annabelle looks sooo good and healthy. Never could tell by looking at her that she had the surgery that she did! Not, sure if you read my comment from before, but we are the family from Michigan that will experience the same as all of you have had to around the middle of June. Our daughter Lindsay has HLHS and will be recieving treatment at the University of Michigan. Anyway, I just wanted to say that Annabelle is in our thoughts and prayers everyday along with them for our daughter and I am so happy for all of you to be able to have her at home. I am praying that she starts eating normally and continues to gain weight in the meantime. That has been my concern for Lindsay and she is not even here yet! I am told the faster the weight gain, the faster that second surgery can be done. Our thoughts are with your family everyday. I am looking forward to the special question and answer session on CNN next week. Thanks for all of the up to date developements on Annabelle.
The Dean Family
Jr, Suzie, Cole, Cruz and soon Lindsay!

Lindsay Dean said...

By the way, we have started a blog as well.
Suzie Dean

wahoolb said...

Great new pictures! I LOVE the one with Wyatt and Annabelle, that is one of the sweetest pictures I have seen. Many asked about you guys at the Heart Walk today in Columbia. We hope you all had a good day today and are ok from the storms. Will talk with you soon and please give your family my love!

Leslie Ballard
Saving Little Hearts of South Carolina

Linda said...

This baby is too precious for words! Wyatt is a doll too. We continue to pray for you.
Linda Green

The Chavis Family said...

We love the pictures! It's amazing how fast they become "rotten". :) We pray everything will continue to go well for Annabelle.
Love, Joe and Kim

The Simmons Family said...

I happened upon your blog and just wanted to say my thoughts and prayers are with little Annabelle...she is adorable!! My son, Owen, was born on the same day and also has hlhs. Reading your blog, they have endured pretty much the same obstacles with eating. We will follow your blog and wish you the best! Andrea