Monday, February 28, 2011

McKinley Update!

Today was our first appointment since we found out our news about sweet McKinley.

Although I was VERY. READY. to go to the appointment, I found myself pretty anxious on Sunday night. I decided that I wanted to sleep in her room.. I spent alot of time praying for her health and for Craig and I as we start preparing for this journey. I prayed for my doctors. And for her surgeon. I finally fell asleep, and although I think I slept, I didnt feel very rested today.

I took Jackson to my mom's house in Edmond before the appointment. My poor mom.. she had men at her house installing carpet and I was dropping off a VERY BUSY 2 year old. My appointment was supposed to be at 11:40 with Dr. Stanley (my high risk doctor), and then I was supposed to have an appointment with Dr. Wilks (my OB) at 12:40. Well, I didnt get called back to see Dr. Stanley until close to 1:00. Although, I really like things on time, its hard to get frustrated because they are SO extremely thorough. And I knew when I got back there, they would take their time with me too. I was more worried about my mom with Jackson.

We had our wonderful ultrasound tech, Denise again. She took her time, and looked at McKinley for a good long time. She showed us the omphalecele again. She printed lots of cute pictures and gave us a DVD of her ultrasound. (I need to scan these pictures!). McKinley looked so cute. She is getting muscles on her arms and her legs looked really long. She was extremely active. She weighs almost a pound!!!

My due date makes me 20 weeks 5 days, but she was measuring 21 weeks 1 day. So alittle ahead of schedule. This is great, because it means she is growing just like she is supposed to.

Dr. Stanley came in and went over everything with us in ultrasound form. He mentioned that one of her feet looked like it was turned in a little, but he thought it was fine. Everything else was looking great. He measured her opening in her omphalecele and it was around 1 1/2 centimeters. So overall, it is very small. Which is GREAT news. However, there is a larger mass coming off the side of her umbilical cord. He can not tell us what that is. It could be some type of jelly substance coming off the umbilical cord, OR it could be a part of the omphalecele. He just can not tell for sure.

One thing that I do want to explain, that I misunderstood from our first appointment, McKinley does not have any organs loosely hanging out of her body. Hers is held within the "skin" of the omphalecele. Dr. Stanley does not use the word "skin", thats just the easiest way for me to explain it to you. This is the main difference between the gastrocesis and the omphalecele that McKinley has.

We were able to ask him all of our questions. He hands down agrees with us, that Childrens is the place to have McKinley. I expressed my concern about the med students/residents/ fellows being a part of not only McKinley's surgeries but my C-Section. No student/resident/fellow will be a part of my surgery. They will be a part of McKinley's. We will have to talk to our surgeon to find out to what capacity. McKinley's diagnosis is SO rare, that alot of times, medical students never get to actually SEE it, they just hear about it and read about it in their classes. I have NO problem with them learning from McKinley.. I just dont want them necessarily touching. :)

As far as the surgeon goes, we had 3 names that were our top choices. I did not know the process of whether we would get to choose or if Dr. Stanley would have his choice. He mentioned to me the top 2 surgeons he would like to do the surgery. They were our top 2 choices!!!! I think we are going to go with one over the other, because one is close to retiring. McKinley could have some recurring issues, and we want to make sure that our surgeon will be able to work with us for a while, if we need him. Craig and I both feel at peace with the surgeon, we think we will be working with. He operated on a good friend of mine from high school's daughter when she was born sick. They had such wonderful things to say about him, so we really are pleased.

Dr. Stanley let me know that McKinley's diagnosis presents no risk to me (not anymore than a regular pregnancy!). That was nice to hear.

We walked away from the appointment feeling good. It is just nice to have more knowledge. It is nice to be able to think clearly in an appointment and not feel like I am going to throw up the whole time. I am thankful for the prayers for us and for baby McKinley. Keep them coming.


Alena said...

Glad to hear a good report! I'll keep praying for her! :) Love ya!

Kendra said...

Continuing to pray for God's grace and healing over McKinley, peace and strength for you and Craig and family and knowledge and wisdom over the doctors.
Children's is such a an amazing facility. When my daughter was there being treated for c-botulism, interns were in and out all the time. I finally had to speak up. I was all for learning since her diagnosis was so rare but there came a point when it was a nuisance.
God bless.

mckenziegordon said...

So glad you got some questions answered. Sometimes the wondering is almost as bad as the actual problem. Thanks for the update! Keep them coming and we'll keep praying for all four of you!

Anonymous said...


I am praying for your precious family, especially your sweet baby girl. I wish we could be friends in real life. You are such a genuine and kind person.

Love to you all,
Tulsa, OK

Missy said...

I'm am so glad to hear a good report! We won't stop praying! :)