Wednesday, July 27, 2011

San Antonio - Part I

Happy Girl
Well, we are back from San Antonio.  We went down Sunday afternoon and stayed with Stephanie's aunt and uncle in South Austin. On Monday morning we drove in to San Antonio where we met the Doctor and the Liver transplant coordinator and their staff.  This visit was basically an introduction of their program for us and a preliminary screening of Abigail for them.  There will be a full evaluation of Abby should she be accepted and get closer to needing a transplant down the road.  We went over her medical history, current health, and options for her future and scheduled a follow up visit.  The doctor was upfront but courteous when talking about the issues she/we are facing which we appreciated.  He told us that right now she looks good and that the bilirubin levels are showing that she is in-between 2 (what he would say was a good level with her surgery) and 6 (which would be an unsuccessful surgery).  Her levels have stayed around 3-4 so she is right there in the middle. Currently her total bilirubin level is 3.8 and she is 12 lbs 6 oz.

Meeting the doctor
After he answered all of our questions and gave us some advice we spoke with the Transplant Coordinator. She went over some of the specifics of being listed on their liver transplant list.  It will be panel of people that decide whether or not she (or anyone else) is a candidate for a transplant.  The surgeon, GI specialist, and a few others will be in on the decision.  When we were through in the doctors office we took Abigail across the way to the hospital for some tests.  This was where the day started to go south for Abby.
Getting my blood pressure taken

Still happy
Gray's Anatomy - Liver Transplant
The doctor ordered some blood tests, an Echo Cardiogram, and a Doppler/ Ultrasound of her liver.  They wanted to know A) is her heart in good shape for the foreseeable future, B) what is her current bilirubin and a few other levels, and C) what is the liver looking like and the vessels and things around it?  We waited for 45 minutes in the lab area and then were told we should go see Radiology.  We thought we wouldn't get all the tests done because it was getting late in the day. Abby got the Echo done with non-stop crying and then we headed down the hall to get the Doppler/ Ultrasound of her liver done.  More crying.  After those tests were complete we went back downstairs to the lab where she needed blood drawn.  Three needle sticks later and a lot more screaming and she was finally done.  We all were worn out after the drive back to Austin.

Passing time in the Waiting Room
I like standing up

Packing up all of our gear
So what next?  Well we heard from the Transplant Coordinator this afternoon and she verified that Abigail is stable enough to keep doing what we are doing.  They would like to see her in three months pending things go smoothly.  So she is now plugged in with the right people for a transplant which is great.  The next visit will be just a check up and blood work if she remains stable.  That will be our prayer.  So that was San Antonio Part I.  To be continued.

Friday, July 22, 2011

Five Months Old

Abigail turned five months old yesterday!  She's kind of a big deal.  Having been discharged from the hospital at three months old she has now been at home with us for two months. She gives us a run for our money sometimes but she can totally melt your heart with one of these smiles. 

Check out my two teeth!
Wednesday we went to the E-N-T and set up a time for Abby to have a hearing test. After an unsuccessful attempt a month ago with a hearing test, they prefer she have the test done while under anesthesia.  Abby has an MRI scheduled in early August so they can combine the hearing test and MRI while she is under.  They also will be looking for fluid, removing it as necessary, and possibly putting tubes in her ear that day.  If there is hearing loss we will discuss the options with the doctors.  We pray that she doesn't have one more thing like that to overcome.

Here is Abby at five months...
Five Months Old
With my Owl Friend
With my Owl Friend
With my pillow
With my pillow
We will head off to San Antonio this week for Abigail to be evaluated by a liver specialist. If Abigail will need a liver transplant this will be the place it is done.  Therefore, we are making some early connections should we need to get on a donor list in a hurry someday. It will be her first night away from home and we will find out how difficult traveling with an infant is.  How does the pack-n-play fit back into its bag? We'll give an update on the visit when we return.

Abby also got a visit from the Blankenship family last week.  Ben, Hannah and Emily have been praying for Abby and finally got to meet her. She was pretty fussy at the time so they were a little shy. Crying babies are pretty scary even for grown-ups though.  Thanks to everyone for praying for our little girl.  We can't tell you how much that means to us.

Hannah, Ben, Emily, Coach B, Coach T and Abby

Saturday, July 16, 2011

Abby Update

Well Abby is finally feeling better since we wrote the last posting. The stomach bug or whatever she had ran its course and she is back to her smiling self.  Yesterday, Abigail had her four month old shots and took them like a champ.  She is nearly five months old but is behind on shots due to the surgeries she has had.

Visit to the pediatrician

Ready or not?  Shot time!

We've really been entertained by Abby lately.  She is using her hands more; grabbing, reaching and finding her mouth.  She is also cooing and babbling more and rolling over on her side.  In addition, she is improving at taking her bottle which is a big deal for her.  She currently weighs 11lbs 12 oz and is 25 inches long. That's 66th percentile in length and barely making it on the growth chart for weight in the fifth percentile. Her last direct bilirubin level was up slightly to 3.3 but that change was minimal.  We will get another blood draw Monday to compare.  Her color still looks good so we are encouraged.

Abigail got to meet her Aunt Debbie for the first time this week.
Unaware of the shots to come.
Happy girl

The end of the month will be busy for Abigail.  She will see an Ear-Nose-Throat specialist who will take a look at her ears to see if there is any hearing loss.  She received ototoxic drugs while in the NICU and we are still unsure how/if her hearing has been affected.

We will also be taking a trip to San Antonio to see a liver specialist.  Though her health is stable right now, it is very likely she will need a liver transplant sometime in her life.  Whether it will be a year from now, five years from now, or twenty we don't know.  At present, she is not even a candidate to be put on a liver transplant waiting list.  We will be going to get her evaluated by the doctors that would be doing the liver transplant.  Our doctors here felt like this would be a good thing to do early on. That way if things turn south quickly we would not be unfamiliar with them and vice versa.

Still working on holding my head up.
Still figuring each other out.

Thursday, July 07, 2011

Not Feeling So Hot

Not feeling well can you tell?
The past few days have been especially hard for Miss Abby. On Tuesday morning she woke up with 102 degree fever and really fussy.  We gave her a cool bath and took her to the pediatrician.  She had trouble using the restroom which is a much more complicated fix than a suppository for her.  Also, she isn't supposed to have much, if any, tylenol for pain. It's not good for her liver.  In other words, it hasn't been very easy for her the last few days.  The pediatrician said it is probably a stomach bug and gave us some medication. We also can give her small doses of motrin for pain.  In addition, Abigail has two teeth coming in that are more than likely adding to the pain.  We hope the stomach bug runs its course and that she feels more like herself soon.

My new teeth
We did have a play date with Audrey T
We did have a few bright moments during the past week as we celebrated Independence Day with our family.  Abby is making all sorts of funny faces as those teeth are coming in.  We captured a few of them so click on the collages to make them larger.

My granddad can't get enough of me!