Wednesday, May 28, 2008

Now for the good news!

"Mom, this baby is a miracle." Those were the words uttered by Sydney's neurologist at our last appointment. It was our first appointment with him but he did receive her medical records in advance so he basically decided what to expect before he even saw her. When he walked in the room, she turned her head around to look at the door and he said, "Is she always that alert? Is this the baby born at 26 weeks?" He did a thorough physical exam and tested her neurological development and was very impressed. He said based on the amount of fluid that was on her brain, he didn't even expect her to be meeting milestones for her adjusted age, much less her real age but she's doing everything she's supposed to be doing and then some. Her motor skills are sharp, her reflexes are great , she has perfect head control and she's vocalizing. She spent the entire appointment just chatting and squealing away.

He said if no one told him she was a preemie he wouldn't know just by looking at her and he's had 25 years experience. He said based on her size, he would just assume she was an average 5 month old. I can live with that. :laugh: I am always thrilled when men of science call her a miracle because I know it's hard for so many doctors to say. He also asked me what we were doing because it was obviously working and I told him we were praying. He said, "Wow. Well keep on doing that." Go God!

I did tell him that my only concern was her extreme gag reflex and he said most babies do gag a lot when they become fascinated by their hands but it's more severe in micro-preemies who have had to endure feeding tubes down their throats 24/7 for weeks on end. Vomiting is a very common problem among preemie parents everywhere. When I look at the blogs of my friends, it's a recurrent theme. He said he's happy that she IS eating and swallowing because some babies have difficulty even with that. During the appointment he told me that he didn't think she needed any therapy for anything else (wow!) but he wanted her to see the occupational therapist for an evaluation to discuss tips and tricks to combat the gagging. It's his belief that she will merely outgrow it but of course, we don't want to ignore it.

The Atlanta neurologist also recommended another MRI in about one month, to check the fluid on her brain and check her eyes again. Based on how much they had to drug her the first time around, I was DREADING it. If they had to drug her like a horse when she weighed 7 lbs, then would have to drug her like an elephant now. It took her a week to get over being sedated like that and she stopped breathing a few times along the way too. He said if she had even one sign that suggested that she was regressing or not developing, he would be ok with an MRI but now he's not comfortable with drugging her like that to find out what we already know. He said as of right now, she's advanced for her adjusted age and only behind for her real age because physically, she's not the size of a 7 month old yet. A lot of babies with stable hydrocephalus do outgrow it as their brains mature during the first 12 months of life and a cranial ultrasound will work for that too. He also confirmed that she definitely can see and he didn't notice anything serious with her vision. Of course he wanted to make sure I was comfortable with not doing an MRI and I was thrilled! As it was getting closer to the time the first neuro recommended we get the repeat test, I was getting more and more anxious. There goes God - teaching me to be anxious for NOTHING again.

He does want us to keep our appointments with the ophthalmologist and of course he's going to watch her development closely. He says he typically sees babies with neurological issues monthly but he was so happy with her, he doesn't need to see her again for 4 months when she becomes more mobile. If I have any issues or concerns then of course I'll contact his office.

I am just always so blessed, humbled and amazed after all these doctors visits. Thank You Jesus.

The BIG news of the day: SHE SAT UP FOR 2 WHOLE MINUTES THIS MORNING!!!!! I'll take a picture later.

Jesus Take The Wheel

My apologies for the delay in posting that update I promised but the past few days have been very challenging in our house. Our issues with Sydney's gag reflex have worsened and I spend pretty much all day trying to prevent her from gagging on her hands and puking. She loooves to suck her hands even when her teeth aren't bothering her and if she does it for prolonged periods, puking is inevitable. The socks/gloves worked for a bit but she has now figured out how to get her hand in her mouth even when she's wearing them. She doesn't gag as quickly with the socks on but it still happens. She has also figured out how to take the socks off. The kid is a genius. A genius who is so used to puking, she's not motivated to stop.

When she takes a nap, I still have be upstairs because I never know if she's going to sleep for 10 minutes or an hour and as soon as she's fully awake, the sucking starts and I try to not let her spit up when she's lying on her back. This morning I put her on her mat so I could make a few calls and she puked twice in 10 minutes and once while I was holding her but distracted because her doctor called me back. The amazing thing is that she's now sleeping through the night (9:30p.m.-7a.m.) and while she does suck her hands during the night, she does not spit-up. I think it may be because she doesn't fully wake up so the sucking isn't as forceful.

In some ways it's worse than the reflux because we were pretty sure that if we held her upright for 2 hours after a meal, she wouldn't spit up. The gagging can happen at any time. She's 95% over the reflux now and I have not given her any medicine for it in almost two weeks so we're happy about that. It's very frustrating seeing her struggle with this and know there's very little I can do about it. She does gag when I feed her one meal of solids per day but I dance/act like a circus monkey, it distracts her long enough to suppress it. If I allow her to suck her hand after she eats, she pukes and then is immediately hungry. It means I'm constantly feeding her if I let her out of my sight for 5 minutes. Once she gets her hands in her mouth, there's no stopping it. It's a catch 22 because I want her to use her hands and play with her toys and get used to different textures and things but she likes to play with one hand and suck the other. :sigh:
Anyway, please keep her in your prayers. We really appreciate it.

Monday, May 26, 2008

Memorial Day 2007

Disclaimer For the confused Jamaicans: I am NOT pregnant again. Today is Memorial Day and this video was one year ago on Memorial Day 2007

Friday, May 23, 2008

Finally! Some Video

I have an awesome update but don't have the time to post it until later. In the meantime, here's some new video and a few pics to appease you until then. Yes Grandy, I'm talking to you...

Chatting and blowing spit bubbles:


I did a double take when I saw this one. She looks so much like B!

Thursday, May 15, 2008

How awesome is God?

Some of you may remember me posting about Nate, Tricia and Gwyneth a few months ago. I am happy to report that Tricia had a success double lung transplant a few weeks ago and is doing incredibly well and little Miss Gwyneth was discharged today!!! She was born at 24 weeks, weighing less than 1.5 lbs but she has beaten all the odds against her so far. Her biggest problem was gaining weight and for a micro-preemie that's just fantastic. I am amazed at how big God is and how he still delights in performing miracles everyday. The family still has a long road ahead of them with Tricia's recovery and therapy and monitoring Gwyneth's health but the events of the past few weeks have been big steps forward.

Anyway- Martina McBride

You CAN spend your whole life buildin'
Something from nothin
One storm can come and blow it all away
Build it anyway

You CAN chase a dream
That seems so out of reach
And you know it might not ever come your way
Dream it anyway

God is great but sometimes life aint good
And when I pray
It doesn't always turn out like I think it should
But I do it anyway
I do it anyway

This worlds gone crazy
And it's hard to believe
That tomorrow will be better than today
Believe it anyway

You can love someone with all YOUR heart
For all the right reasons
And in a moment they can choose to walk away
love em anyway

God is great but sometimes life aint good
And when I pray
It doesn't always turn out like I think it should
But I do it anyway
Yeah I do it anyway, YEAH,

You can pour your soul out singin'
A song you believe in
That tomorrow they'll forget you ever sang
Sing it anyway

I sing
I dream
I love anyway, yeah.

Thursday, May 8, 2008

Teething Bites

It really, really does. The little one has been very cranky since the whole process began but thankfully some days are better than others. Some days you simply can't get anything done because she's very needy and clingy when it hurts the most. Who wouldn't be? She has also taken to chewing her hands all.the.time and she's so aggressive too! It would be no problem for us and we wouldn't care at all since it does comfort her but she has SUCH a strong gag reflex that she gags 100% of the time and all her food comes up. The reflex is caused by her spending so much time with the vent and feeding tube down her throat and it happens when she's trying to "talk" too since she uses some of the same muscles. Therapy should help with this and it is a very common problem among preemies. If she spits up these days, 9 times of 10 it's due to her sticking her hands in her mouth. We have been spending a lot of time holding her hands and playing with her hoping to distract her but the second you stop, she gags herself. Yesterday I changed her and went to wash my hands and she gagged in the minute I was gone.

Finally, this was the solution that we came up with:

We used those after she came home and was scratching her face all the time. I was not her favourite person after I put them on but she's had them on most of the morning and has not gagged once. She's still sucking but can't get her fingers into her mouth. She gets so frustrated when it happens, especially when she's squealing and laughing. It's as if she's saying, "Why does that keep happening? All I want to do is talk and chew my hands!"

As my friend Rebecca said, "Being a baby is *almost* as hard as being a Mommy." How true.

How hard is it to take a picture?

Take One:Mmm...No, that's not gonna work. One More

I suspect that if she could talk she would be yelling, "Put.Me.Down!!"

One More.
No. No. No.

This is it now! This is the one, right?
:rofl: I guess not.

Finally! This one is a little hazy but I love it!!!

Bonus pics for Grandma Pat

Tuesday, May 6, 2008

Things that are not ok...

Random strangers touching babies! Ugh! I never knew maternal instinct/rage could be so strong but everyday I'm shocked at how riled up I can get in defense of my daughter. A few days ago we were waking around the store and I was wearing Sydney in my baby carrier. The one I have looks like this one and it is FANTASTIC!

Sydney is so comfy and snuggled in it and we don't have to always lug the stroller around when we go out. It's been really, really nice. Anyway, it's not as easy for people to get close to her as they would if she were in a stroller but a woman (who clearly lost her mind) managed to do so. The first thing she did when she approached was to touch my child on her cheek. Exqueeeeeze me?!?!?! I don't know you! We really haven't been too anal about the germ thing but we definitely don't want people we don't know touching her. I started to move away and she managed to touch her on her arm, again. It took everything I had in me to not hit her! I don't know you! I don't know where your hands have been and could not have made it any harder for you to touch her, except wrap her in a sheet. Thank God for Jesus. Grandy saw the whole thing go down and I think she was gonna knock out the woman too. We wiped her off and I spent the rest of the day avoiding situations where anyone could try that again.

Brian was not amused when I told him about it and proceeded to wipe her all over again himself. :laugh:

It is NEVER ok to touch someone unless you know for certain it is ok with them. I think I've calmed down now...

Monday, May 5, 2008

You know what's awesome?

Ceiling fans, lights and a/c vents.

For Real. Just ask Sydney. She smiles and squeals and enjoys them tremendously. It's the cutest thing ever and I'm loving seeing her practice using her "voice."

She gets cuter by minute and I'll work on video to prove it. :love:

More pictures coming soon!

Saturday, May 3, 2008

Happy Birthday Auntie Marsha!!!

Outfit brought to you by Grandy!

Friday, May 2, 2008

Random Pictures...

from the past week.

This is true.
Gran Gran, Happy Birthday!!! These 3 are for you. She was all smiles for Daddy this morning.

Genius at work
She's tries to eat anything that comes near her mouth. :laugh:
My husband truly thinks she's his toy! He insists the glasses were only on long enough to take the picture.
All dressed up to see the doctor. Outfit brought to you by her Auntie Trish.
"Mommy, will you please stop kissing me for once?!?!?!?!? Sheesh!"

Guess who's a big girl??

If you guessed Sydney, you're right! We visited the pediatric specialist today and Miss Thang did her best to amaze him. She weighs 13.75 lbs and is 23.5 inches long. Her weight is right in line with her peers at 6 months and her length is closer to that of a 4 month old. Her adjusted age is 3 months 1 day, so this is excellent progress! There's not a day that goes by that we don't marvel at how much God has allowed her to thrive. He was very impressed with how energetic, alert and strong she is and he kept referring to her as a "little tiger." :laugh: She did not submit to her examination readily. By the time it was over and after all the fighting, she fell asleep immediately. She also got 2 of her 4 six month shots today and she took them well. It was over 3 hours ago and she's happy and smiling... with the help of a dose of Tylenol of course!

He also gave the go ahead for us to start solid food, with one new vegetable per week for now. We will only do it for one meal per day and increase as she grows. He also made arrangements for us to see the neurologist in a few weeks to set up all her therapy and do an evaluation to decide when to do her next MRI. I'm actually very excited about starting her therapy sessions since she's so aware now. God is good! I can't say it enough.

Pictures to follow later today.