Bergen Taylor Hightower

Thursday, August 22, 2013

Our Daughter's Progress

{Holding our daughters  hand, praying, before she goes in for her MRI}
On August 12th, Isla was scheduled for an MRI at The Levine's Children Hospital. We had to be there at 6:00am which meant Isla was not allowed any milk after 2:00am.  I thought to myself, how in the world am I NOT going to feed our three month old for 5 straight hours when she's still feeding every 2 - 4 hours??  Isla has been a great sleeper (and eater) just as soon as she came into this world so I had no doubt that we could pull this off.  Well, little Isla woke at 1:30am and took a whopping 5 ounces of milk right up and finished by 2:00am.  It was perfect timing!!  She went right back to sleep, waking at 5:00am just as happy as any other morning and off we went to the hospital for her scheduled appointment.  It went pretty smoothly and we could not have asked for a better plan that morning.
We arrived the hospital, they checked us in.  They were pretty quick to get us back to consult with the Anesthesiologist which was relieving because by that time, Isla was starting to get fussy for her feeding.  Only one parent was allowed to go back during the anesthesia process so I chose to be the one to go back with her.  I am not a strong person.....I have always been told that I am the strong one in the family but I think this has been, by far, the weakest I have ever been.  I prayed hard again that morning asking for the Lord to keep me strong.  Strong for her, strong for my family. 
I will admit.  It was hard.  Hard on me.  I put Isla down on the hospital bed, they strapped her down and asked me to hold her little hand and talk to her so they could put the sleepy gas over her nose and mouth.  She cried and kicked and squirmed for about a minute and then I watched her little eyes roll back into her lids.  I was trying to hold and fight back my tears and act so strong but I just couldn't. I completely lost it. The nurse touched me on the shoulder and said that it was OK to cry. The nurse then told me it was time to leave the room so they could start her little IV and get the MRI process going. At that time, they assured me that the process was going to take about an hour and then she'd be in recovery and they would come get Douglas and I immediately.  It happened just as they planned it to.  About an hour later, they came to get us.  As Douglas and I walked down the  hospital hallway, we could hear our sweet girl crying the saddest little cry so we got to her as fast as we could.  I grabbed her and wrapped my arms around her and cuddled her and fed her right away. She was a happy little nugget by then. 
On August 14th, Isla had to return to the eye doctor for a procedure (ERG) that we were not quite prepared for. The ERG runs all types of lights and scans the eyes to be able to read how much, if at all, the eyes can see.  So, you could say that Douglas and I were all for this test and anxious to know the results. They had told  us originally that they typically do this type of procedure under anesthesia for babies but since Isla just had anesthesia on that Monday, they were persistent with trying it without putting her to sleep.  The ERG scan failed and it was due to Isla crying and moving around too much.  It was so hard to watch her go through that.  It wasn't easy...on her or us.  Since that procedure failed, our next step is to go to Duke to have it done.  It's the only center that will perform that test for babies, under anesthesia, for this type of diagnosis.  We also have the option of waiting until we are scheduled to go to University of Pennsylvania for the research and testing but we have to wait for that trip because we have to get our genetics testing done to see if both Douglas and I (including Isla) have the particular gene that is being trial tested by a group of doctors there.  That's where HOPE and FAITH falls into place.
On September 30th, we will have our genetics testing done.  And as I mentioned above, we will find out if we are gene matches to the particular testing that's being done.  If we are not matches, it's true that I still believe in MIRACLES.
Please keep us in your prayers that our genes match and opens the door for research.
"You can make many plans, but the Lord's purpose will prevail" -- Proverbs 19:21.
Thanks for stopping by!

1 comment :

  1. Bergen, I have been praying for you guys! Praying for strength and a peace that transcends all understanding that only He can give. You are a beautiful mama to this heaven sent little girl!