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Friday, March 4, 2011

The "Big" Appointment Report

We had a very very long appointment this morning with our specialist at Northside. We did leave with some hope, which was a welcome and pleasant feeling.
We had an hour plus long ultrasound going over the full anatomy of our little girl. She was VERY wiggly today and they had to "catch" her in certain positions because she was moving so very much. That was certainly neat to see. As we somewhat expected, our little girl has a heart defect. Although severe to our specialists, we won't know exactly what it is and what they can do about it until we see a pediatric caridologist next week. This Doctor is also at Northside, so we feel blessed being at such a great facitlity for care. We saw a very clear profile (with such a long ultrasound we saw A LOT of our sweet girl), we saw 2 hands, 2 feet, 10 fingers, 10 toes, nose, lips, and so very much more~I mean to tell you all, we saw it all. That is the one nice thing about the specialists office, you get very very in-depth looks at your babies.

The good, I mean great news to us~ the hygroma was gone!!! It was not seen by the Doctor! This was HUGE news to us, the Doctor said it was good news because it can take over the baby and create something called fetal hydrops which is fatal. So that was a wonderful praise for us! While he agreed that was good news, he was quick to remind us that the heart is the problem, and that is what was causing the hygroma. He did see 4 chambers, which again positive news to us, but doesn't believe one is pumping correctly to where it should be. He said the cardiologist would be able to look at this more closely. Our specialist today spent lots of time with us after our hour long ultrasound, even conducting one of his own and her anatomy on all parts look good except the heart, so again rejoice in small victories. Her intestines were "bright" but he wasn't too terribly concerned with that since we have had a CVS test (which was normal), a Cystic Fibrosis test (which was negative) and these can sometimes be indicated through bright intesines. Again, we focus on the heart issues for now.

We understand the Doctors have to present us with the information and they can't be eiher super negative or super positive at this point so we hold out continued hope for a miracle. Our little girl still needs a miracle at this point since we are dealing with obviosuly such a vital organ and we still have a long road to face. We pray that the heart can be healed, fixed, in some way shape or form. We again will know much more next week after our appointment. He said he was "sorry to give us such not so great news" but to us, the fact that the hygroma was gone, and the heart,(though we don't know the exact issue) can possibly can be fixed and healed. We have heard some miracle stories about hearts being healed in utero and shortly after birth, we again, hope we are one of those stories. We are aware this path can change at any moment, but we rejoice in today as we continue to take things simply day by day.

Thank you again for all your prayers, calls, texts, cards, surprises (yet another yesterday & today just "appear"), you all are amazing. Starting at 7am all the way
until now when I type this at 11:40 the phone hasn't stopped. The entire way to the appointment we receieved text messages all along the way, almost too many to count it was unreal!(and this was early for some of these peeps :)). It meant so very much, we just cannot get over the love we are being shown by SO SO many of you! Each message means more than you can imagine. When we see "praying for you right now" and "on my knees for your sweet girl" over and over all the way to the appointment and home, we are in absolute awe. We appreciate ALL of you who prayed today, yesterday and will continue to do so tomorrow and all the days this journey continues. As we said on day one, we serve the Divine Healer and we hope and pray its in His mighty plan to heal our sweet little girl.

Much Faith, Hope and Love,
Jennifer & Jimmy

6 comments:

lesley foster said...

Bud I am overjoyed with this news - it just seems like baby steps in the right direction. Now we can focus our prayers on her little heart and for the pediatric cardiologist. Morgan and I had been checking your blog like every 5 mins and then I was talking to Nellie and he saw your new blog come up ... lol. Anyway we love you and continue our prayers for you, Jimmy and sweet baby princess!!!xoxoxo

Lindsey said...

Beyond thankful for the continual small victories. Like I said, Baby Bud is a fighter! The prayers haven't stopped yet. Our prayers also to the cardiologists and other specialists that my sweet niece will meet along the way.
love you!

RFMjr said...

Awesome and amazing! Big hugs to you both. It is wonderful to see how you two lean on each other and take care of each other. That, and God, will get you through this. Trust me on that. Haley and I know.

Now, get some rest.
RM

Jennifer said...

Every day is a milestone and we continually lift you both up in prayer to our Lord and Savior, the ultimate physician. I just called my mom to give her an update and wanted to let you both know that their entire church in Michigan has been touched by your journey have been praying for you and will continue to do so. Hugs to you.

HappyascanB said...

Praising God for good news. Now we will pray for good news next week with the caridiologist. We love you!!

Claire said...

Wow- awesome news about the hygroma being gone... I know some peeps were specifically praying for this. We will keep her heart in special prayer now as well as you & J. May God bless your family. xoxo