The Smith Journey: updates

January 31st....is staring us in the face! Surgery used to be when "the baby" is four to six months old, then when Chandler was four to six months old, then January 31st, but now it is THE 31st!!! As in THIS MONTH!!! We have been talking about this surgery since June, but now that it is here, it takes my breath away. We went to see Dr. Parnell on Friday with a page full of questions. She answered them all and never treated me like a neurotic mama, even though I felt/feel like one!! She also increased her medicines to .05 mL for each dose and no more weight checks..HALLELUJAH!!!! Every time we went in the Children's Clinic, I just felt like the germs were jumping on us but we do what we gotta do!

Anyway, here are some of our questions and her answers:

How long will surgery last? Surgery will only last about one hour total but with prep work, surgery, and recovery, we should be prepared to not see her for about five hours..whoa!!
After surgery, while she is in the NICU, we will be allowed to see her every hour until she is off the ventilator. They don't want to take her off the vent too soon and then have to put her back on it, and neither do we!! Babies with Down syndrome tend to fight the tube, so they think they are ready to breathe on their own, only to be taken off and be sluggish, non responsive and be put back on. Estimated time on the vent is roughly two days, could be sooner, could be longer. Once off of it, she will be transferred to a regular room where we can stay with her..yay!!
As far as high calorie formula after surgery... There is no need to keep her on it; however, we will have to gradually go back to regular formula since they taste different. Chandler will probably be happy with that!!
Will this surgery take our happy baby away?!?! She will be grumpy for about a week and then she will be back to herself..thank goodness!
How long for full recovery? About four weeks..which includes hospital stay, post-op visits and extra TLC :) Since we trust our daycare and they are not "afraid" to keep her, she will probably start going then. Which is a wonderful thing..this OCD mama is ready for a better routine!! I know, I know, wishful thinking about a schedule with two children, but one can dream, right?!
Will she have to stay on meds? Yes, for a short time after surgery and then she will gradually lower the dosage until she will no longer take any medications!!
Possibility of other surgeries? They will know more once they do this surgery to determine if others will be needed, but as of now she is optimistic that this will be the only surgery she will need!
What about big sister coming for a visit? She recommended letting her come later in the week and suggested that Child Life talk with her before she sees her. They will explain things in a childlike way and have Chandler all covered up so that she doesn't see anything. This part is very emotional for me...leaving my big girl, who doesn't understand what is going on, for a whole week..eeek!! So, some wonderful family members and friends have offered to bring her for short visits to see me and her Daddy but maybe not to see Chandler. She is so sensitive and emotional too, that it might just freak her out...
Speaking of freaking out...she warned us that Chandler would not look like herself and would have lots of tubes coming out of her little body..let's hope that her Daddy can keep it together and not pass out and her Mama, for that matter!! But it will be hard..

We will not be back to see Dr. Parnell again, but she assured us she would make a special trip to see us on surgery day..even though she won't be making rounds that particular day. It makes us feel so good that she cares so much!! They will be calling to set up a pre-op appointment soon.

In the meantime, she was granted Medicaid for institutional level of care. A kick in my stomach, but she now has health care and that is all that matters, no matter what the label is.

Regarding Early Intervention...I did the interview back in December. I have to say it was tough and I cried a little afterwards, only because I was in the "parent" chair and not the "professional" chair. She did a developmental history, and it was almost identical to the one that we go over with our parents. Just a different feeling being on the other side. Anyway, the evaluation was yesterday..as Kris said, "how in the world will they test a three month old?!?" But the evaluator asked me alot of the questions since our sweet girl was napping..he has obviously been told you never wake a sleeping baby!! haha He assessed the following areas: social, language, fine motor skills, gross motor skills, cognition, and self-help. For those of you who don't know, they will compare her chronological age to her functional age to see if there is a delay or not. Now, she was not delayed in the areas of social :), language or self-help, but she was delayed in fine and gross motor skills and cognition which is basically mental processes (attention, memory, producing and understanding language)..so again how can you assess an almost four month old's cognitive ability?!? There are some things that she should be doing at this age, but she is not; however, you can bet we will be doing our homework though! For her motor skills, he said to lay her on a hard surface, either on her back or tummy..she will love that ha, and make her follow objects with her head, not her eyes. When she is sitting in our laps, we shouldn't give her alot of neck support, to let her "sit" on her own and hold her head up. Our ultimate goal is to strengthen her neck so that she has better head control, so that she will be able to push up, sit up, crawl, and then walk. He also said to have her hold things in her hands for longer periods of time and encourage her to reach for them. Now, motor has been an area that I have been concerned about, but when we were finished and she had woken up, he asked to hold her and meet her. He said, "she has good head control, you didn't give her enough credit!!" WOW...That made this Mama very proud!!! She will receive services on a weekly basis, but they won't start until after her surgery at Lisa's.

Enough about little sissy, let's talk about big sissy!! She continues to amaze us on a daily basis and I can promise I don't drill her, she is soaking it all up and is constantly saying "read for me!" We LOVE LOVE LOVE our books!!! She is listening even when we think she isn't! She does "school" every morning at daycare and they say the Pledge of Allegiance..our almost three year old can say the Pledge!!! Her words aren't all right but you know what she is saying and it is too cute! She is also recognizing letters "M is for Madeline, Mama and Marley, D is for Daddy, S is for Shimmy" and she knows other letters too!! Her Daddy and I are very proud of her, well, our whole family is proud of her!!!

Speaking of our family, today is Mr. Randy's birthday (AKA "Pops") so we have been practicing singing Happy Birthday to him. Madeline cannot wait to call him today and sing to him, then on the weekend we will have birthday take..she wanted him to have a princess cake but she compromised with a tractor or a truck! But I can assure you, he wouldn't care if he did have Cinderella on his birthday cake!! haha He is doing exceptionally well and has gone back to work a couple of hours a day. Now if he would just follow the rules Nana wouldn't be so stressed..you know how men can be! ha

January is a full and busy month, but the last day is constantly in the back of our minds! Please continue to pray for our sweet girl, us and all of our family, and the surgeons..God has been with us this entire time and I know He won't let us down now!

until next time,
Megan

Some pictures from Christmas...