Tuesday, January 6, 2009

Surgery countdown... shots... weight gain!

13 days until we leave for St. Louis... as long as the surgeon is still confident that surgery needs to be done now. He should call tomorrow or the next day with the MRI results. I've had a lot of people ask about the results. I don't think he will see anything that will put off surgery. He wanted to see exactly what was in her Omphalocele sac now that it's the size of a small cantaloupe.

Blair had her synages shots today. She goes once per month for those. They are to prevent her getting RSV. Usually your child will qualify for them if they are born less than 36 weeks gestation.

She weighs 18.4 lbs!!!! I cannot believe it. Well, I can because she is SO heavy, but she has really caught up with weight gain. Plus, she's been eating and drinking like the little piggy she is!

I also talked to the social worker at St. Louis Children's today. She was SO nice and so helpful answering all the questions we needed answered. I did find one thing out... Ronald McDonald house DOES NOT go by income level. They are misleading on their website. So, there is a chance we will get a room for at least a couple of the days that we are in St. Louis. And, it's only $5.00/night! How cool would that be? Sarah... this was after I talked to you on e-mail today! :) She was going to send a referral to them and I've got to wait to hear back from them. For sure we will have to stay Sunday at the hotel because "new guests" for the Ronald McDonald house can only check in M-F 8-5 or something like that. BUT, after we stay there once we are pretty much guaranteed to be able to stay there in the future and we can even go on the weekends if we need to at that point!

I also found out that we will get 2 free meals per day while Blair is in the hospital. At this point anything helps! She said we could buy additional coupons in the hospital cafeteria for $5.00/meal. I guess they are discounted when you do it that way! AND, the hospital food here ROCKS! Katy... it's SO MUCH BETTER than AR Children's food! And, don't get me wrong... I love AR Children's food... but it's 50 times better!

What else.... oh... she said that Blair would probably be in the ICU for a day or two following her surgery. She wasn't sure if they would keep her sedated to allow for some healing, but when she's in ICU we cannot stay with her at night. UGH! But, she said that's the time for parents to get their rest because once they move them to the PICU then one parent has to be there at all times in the room. I guess there is less supervision from the nurses in that area.

Free parking... another WOO HOO!

I guess we are just trying to get everything together and figure out what to bring and what not to bring with us. Of course they will provide her diapers, formula and baby food while she's in there. I will have to bring her special blanky's for her to have while she's in there.

I think that's about it for now. I will update more later... hopefully I will hear from the surgeon tomorrow!

Hugs - Tiff


Evil Twin's Wife said...

I'm so glad you have a plan worked out. Yes, PICU is much less supervised, so you will want to spend the nights then. And, our hospital had free parking and discounted meals for NICU families, so that should help a lot. (we lived close enough to the hospital where our son was in NICU we never had to do Ronald McDonald house, but I hear they are VERY accommodating). I'm so glad you've found such fabulous resources. Again, let me know if you need anything!

Miss Thystle said...

I'm so excited for you guys! Keep us posted!

Small Town Girl said...

Great news about the room! And meals! And parking! Social workers are such great sources of information, aren't they? I'm glad you talked to one before you got there so you knew all this stuff ahead of time. Social workers helped mom and I a lot when she was sick with getting gas cards and such from ACS. Any little bit helps!

Debbie said...

Sounds like everything is falling into place. I am keeping you all in my prayers!