Wednesday, March 26, 2008

Last craniofacial appt. before surgery

Yesterday we met with Dr. Stelnicki again. He basically went over what we could expect with the surgery and what he would be doing. No real surprises. He said they would be making 2 incisions (possibly 3). One would be on the top of her head and one on her right side (where the suture is fused). The incisions would be V-shaped.

He said that she has a 40% chance of needing a blood transfusion. It would be a 70% chance if we were having the traditional "open" CVR surgery. He mentioned "direct donor" blood for Leah and told us how to go about having people donate blood for her. We still have to find out Leah's blood type and I was told it was as simple as calling our pediatrician. I'm working on finding out her blood type. I also have to call the blood bank (in Hollywood, FL) to find out exactly when the donations should take place. So far the information they gave me at the surgeons says at least 72 hrs. before the surgery but no more than 5 days before. If that is the case that is a very small window of Wednesday and Thursday before the surgery. Also people would have to drive down to Hollywood to donate as they will not be transporting the blood. So much to think about. As soon as I get all the details I will post here in case anyone wants to donate blood for Leah. Even if I am a match they will not allow me since I am within 6 months of having given birth.

He said they would be putting in a drainage catheter. The will be using dissolvable screws. The surgery will last 4-5 hours and that will also be the amount of time she is under anesthesia. Afterward her head will be wrapped in a turban-style bandage and that will be removed a day or 2 later.

My mom went with me this time since Ken was out of town (overnight) on business and was coming home later that day. Dr. Stelnicki's office is right there at the hospital where Leah is having her surgery so I made it a point to take a tour of the hospital. I basically wanted to see where the OR was and the waiting area as well as the pediatric ICU and the pediatric rooms. It definitely helps me mentally and emotionally prepare for surgery day. I can now picture where we will be waiting while she is in surgery, where we will be getting updates by phone and where the surgeons will walk out to say it's finished! I don't know why it helps me, but it does. I will be getting enough new information thrown my way as soon as we arrive and over the time we are there.....the less I have to assimilate that day the better! This way I'll have my bearings.

I met some nice volunteers up in the pediatric ward. An older married couple volunteers in the family lounge/playroom area and they told me we've come to the best place for surgery and how great the hospital and staff are. They said Leah will be in the best of care!

It is hard to believe that in just 17 days we will be heading down there for her surgery. There are many hurdles to cross before that day....the main one which is keeping her healthy. If she gets sick (so much as a runny nose) they will postpone surgery. The minimally-invasive method can only be used on younger infants so if her surgery gets moved she possibly won't be able to have this method.

Pray that Leah stays healthy!!!!!

5 comments:

Anonymous said...

Our family will continue to pray for Leah's health as the surgery draws near. Know that the rest of your family is being lifted up to The Lord as well - for strength and comfort!

Love ~ The Hansens

Amanda said...

Denise, You are so strong, and just remember that! I'm so glad to you got to see the hospital! That was probably a good thing as it will help you prepare a little better! You're getting there!!!!! We're keeping you in our prayers! God is with you always, and is there to be your strength and guidance!

Love, Amanda Cast & Family

Anonymous said...

Love you all and you are all in my prayers. You must have put a lot of work into this blog, we may have to hire you to do company websites. I have a feeling the blog has probably been pretty therapeudic for you too. I is great to see you getting contact with other's that have faced the same struggles.

Hugs and kisses... Sheila

Anonymous said...

Hey Neecee,

We are continuing to pray for you, Ken and the girls. We will be at Disney as planned the 28th until April 5. If it works out that Walt or I are matches and the donation can take place the 4th or 5th we of course will be more than happy to donate. Walt does on a regular basis, I however have not ever but would do anything for you and yours even give blood :-). Remember we love you all and we will keep praying.
Donna
PS. Walt is AB positive and I am A+.

Unknown said...

The scan images are so clear. I see now...and when I first looked at the baby pictures I just saw a sweet little baby with that Sarah/Rebecca mouth! I love the baby picture of her sleeping!!!!! Will they let you in during the surgery? Kelly