Monday, April 13, 2009


As if I need to be making anymore decisions... Dr. Warner (Blair's Pediatric Surgeon in St. Louis) his nurse called me today with a follow-up to questions I had about the tissue expanders. Yes, Dr. Warner AND Dr. Kane (Pediatric Plastic Surgeon in St. Louis) will be present for the surgery. They will first place the tissue expander and we will add fluid daily for 6-8 weeks. We will then take her back to St. Louis after that and that's when she will have a closure surgery. I'm assuming they won't do a full closure because of how much is out. But, I guess they won't know until she gets in there.

My second question was whether or not we needed to wait a couple of years until she is bigger to do any tissue expander surgeries. I told her I really wanted to talk to Dr. Warner about all of this so he is going to call me. She said they both said it's not going to make any difference for us to wait until she is a couple years older. So, do we do it now? Do we continue to wait even though they don't want to? Will she be okay? Can her body withstand the surgery? I have SO many questions rolling through my head that I've caused myself a headache this afternoon!

Friday when I talked to her I explained that we just found out that Blair was born without her Spleen. She did some investigating with Pediatric Dr's at St. Louis Children's and they said she needs to be on Penicillan Profilactics until the age of 5. I guess there are 2 virus's that kids can get from now until that age so it's a preventative so she doesn't get it since her body won't be able to fight it off! She is going to call our Pediatrician to see about getting that started!

Then, we have our little Baylee. I called our Pediatrician today to get the results of her EEG and EKG... this is what she said.

EEG - Normal
EKG - It shows that she has a Ventricular Hypertrophy. Which means that her right ventricle is enlarged and that is what's causing the issues with the seizures. She has a call in to the Pediatric Cardiologist to see about doing an Echo. That will show them the extent of her issue and whether or not she will need surgery or what's going on there.

So, until we figure out what is going to happen she cannot play t-ball or run!

I never thought I would be doing all of this for my kids. I mean, I'm making some decisions I told Pixie Mama that I wouldn't even want to make for myself. I've been healthy my entire life... only issues with female stuff... but other than that only pneumonia at the age of 5 and a routine sinus infection in the fall when the Ragweed is high.

I guess this is why I quit my job a couple years ago... to stay home and keep all of these appts straight!



pixiemama said...

Yes, you do need a vacation. Sometimes it's just too much. You know where my shoulder is if you need it.


Evil Twin's Wife said...

Sweetie {{{HUGS}}}. Try to get even a half hour or an hour alone every evening after those beautiful girls are in bed and just enjoy that time...You need some me time that won't take you away from the business at hand. Believe me, I KNOW. Buddy was sent home from the NICU at 3lbs, 12oz and on a heart/apnea monitor. He needed to be fed every two hours on the nose. He had retinopathy of prematurity (an eye condition) and we had to see the pediatric opthalmologist every 10 days. We had PT/OT/ST at least once a week. We had to see the pediatric surgeon regularly to monitor a hydrocele situation.

What worked for me was focusing on one issue at a time and working to get through that. Sometimes things overlapped, but I tried to tackle one "crisis" at a time. Eventually, one by one, they will all fall by the wayside and your life will be calm and serene once again.

If you ever need to talk, my email is on my profile page. Hang in there. This too shall pass! :-)

Bird said...

fI know what you mean! I always feel like I make the hardest decision all by myself. You probably do need a vacation--send the girls to their grandparents for a weekend! You could stay in the same city if you're worried about them--just don't stay at the same place as them. Of course, it's probably all the medical junk that you want a vaca from and that's a little harder to swing.

You have a heart baby too! Arkansas Children's has just the best cardiologists, but hopefully you won't need much of their services!

Miss Thystle said...

LOVE the new picture!

You do need a vacation. At least one night. Let Britt watch the girls and check into a hotel. It'll be worth it.

Both girls are going to be just fine.


Small Town Girl said...

Well I certainly wish you the best with all this crap! Things sure do get piled on sometimes, don't they?

On the bright side, you page sure looks cute! I love the girls' easter picture! :)