Saturday, December 31, 2011

Days 16 &15...

Day 16 brings back memories of turning 16...I felt so awesome and on top of the the world, like I knew everything! Boy, was I wrong. Its strange how when you are getting older, but still in high school, how cool you feel because you were the big fish in the little pond...we just didn't know how little that pond was and how little we still were...and how much growth was ahead. I could have never in my wildest dreams imagined how many things I would get to experience and learn, and how much one little two and a half pound miracle could change my life.

Today, day 15, is the last day of many things happened this year, and so many more miracles ahead. I look forward to the challenges, the lessons, and the growth 2012 and being 30 will bring.

Happy New Year!!!!

Thursday, December 29, 2011

Day 18 and 17...

These last few days just flew by!!! Bailee is on Christmas break, 
so we are running around and doing alot of entertaining!!!

Today was a great day though, it started with a trip to the spa! 
A much needed break included a massage and facial. 
It was wonderful! 
Thanks to Ben for keeping Miss B for me!

Tuesday, December 27, 2011

Day 19...Down to the teens!

Only 19 days left of being 29...whew...where has the time gone??!!!

"A birthday is just the first day of another 365-day journey around the sun. Enjoy the trip." 
~ Unknown"

Day 20...

Day 20...BUSY DAY!!! I completely missed my post for the day.

Merry Day-After-Christmas...I hope no one had to conquer the return/exchange lines at Walmart!

Sunday, December 25, 2011

Day 21...Merry Christmas!!!

We had a great holiday, celebrating all weekend with the families and more to come!!! I love watching Bailee and seeing her excitement opening all the cool new stuff!!! And I love when she looks at you and says "thank you and HUG!"

"First we'll make snow angels for two hours, then we'll go ice skating, then we'll eat a whole roll of Tollhouse Cookie-dough as fast as we can, and then we'll snuggle." - Buddy the Elf

Friday, December 23, 2011

Day 23...Christmas Eve Eve

Merry Christmas Eve, Eve!
It's day 23 of my countdown and the 23rd of December!
Tomorrow is Christmas Eve, and this year has been great. Bailee is at the age where she is really excited for Santa and loves looking at all the holiday lights, which was (and still is) a favorite of mine too!

So, Merry Christmas Eve Eve Everyone!

Thursday, December 22, 2011

Day 24...Starting the Year with a Bang

Well, it seems that all my girlie problems have added up and are to the point where I just can't take the pain anymore, so we decided to celebrate the new year with a hysterectomy. Why not, right? 

So, day 24, scheduling surgery to get it all out and looking forward to my 30th year getting to be pain free!!! The biggest catch with this surgery is that I cannot lift Bailee for 6 weeks! Uhhmmm...she has cerebral palsy doc, she can't walk...what should I do, just tell her to get up and use those legs!? Maybe this surgery will get her walking. If I can't carry her, she will need to fend for herself, right? Well, in reality, we have help lined up...but if you are free and want an upper body workout, feel free to stop by and lend a hand...or two.

Wednesday, December 21, 2011

Day 25...Ban the Skinny Jean

I woke Bailee up for school this morning and the first thing she said was "no." Just a plain old no.

And I said something like this "I agree, we must do something about these boys wearing girls' pants...we must take action and ban the skinny jean!"

We will take action and do our part and not support the skinny jean cause. If you are a cute thing, and female, go for it, especially with tall boots. But a guy, walking down the street with skinny jeans and a sag...not cool.


Tuesday, December 20, 2011

Day 26...

Day 26...Ambien tonight. Whew, its only Tuesday, and I am exhausted. 
A lot on the mind of a 29 year old tonight, so I leave you with a fortune.

"Don't be afraid of opposition; remember, a kite rises against the wind." - fortune cookie of the day.

Monday, December 19, 2011

Day 27...

Well, after I endured the estrogen raged women at Michael's today...I saw some pop rocks when I was checking out...thought for a second for day 27 maybe I would test the pop rocks and cola myth, but decided against it...maybe its best to have someone else try that first...just to be safe!!!

Today, for my big stuff...Bailee went to the school store and picked me and daddy out some gifts. She got me a stuffed pink poodle and daddy and giant stuffed Nemo. She gave them to us, we opened, and she declared they would be best with much for gifts from Bailee.

Today I booked a morning at the spa...massage and facial!!! For my 29th 29 day countdown, I go to PureSpa on December 29! Whoo hoo!!!

Sunday, December 18, 2011

Day 28...

Sunday starts with a homemade breakfast by the weekends when we eat together.

Memorable moment of the day...daddy taught Bailee this one:

Daddy: "Bailee, what is mommy?"

Bailee: "A FOXY LADY!" this is what I imagine myself as.

Saturday, December 17, 2011

Day 29 of the 29 Day Countdown to 30!

Well, today started with gluten free pancakes...yum (actually GF bisquick is good, plus they had chocolate chips in them-thanks Ben!)

Then off to Bailee's Christmas dance recital. She did great! At some point during the recital I think I realized I may have forgotten to put on my deotorant this morning...whoops. At least it was freezing outside, so I didn't smell.

Friday, December 16, 2011

29 countdown...

Well, its almost here, and hard to believe! In exactly one month, 
I will be turning the big 3-0!!!

So, in honor of this upcoming spectacular-ness...I've decided I am going to do a 29 day countdown of my last 29 days as a 29 year old. 

Bring on the fun!!! 
(suggestions for activities welcome!!!)

Wednesday, December 7, 2011

Sesame Street Live!

We did it, we went all out this year and bought the VIP tickets to Sesame Street Live! Thanks go out to our good friend Hal, and Mimi (grandma) for making this possible for Bailee!!!

Because of Bailee's CP, she doesn't get to run around like all the other little 5 year old, so its so special to be able to give her a treat that she truly loves!

She had a wonderful time and tells everyone she sat on Elmo's lap and gave him a big hug!!!

Friday, December 2, 2011

Cheeeeeessseee Please!

What do you get when you combine a giant mouse, a birthday, and 5 year old Bailee???  - A really excited little girl!!!

One of Bailee's classmates in Kindergarten is celebrating her 6th birthday this Saturday at Chuck E Cheese...boy is she excited!!!

Having a child with special needs raises a lot of questions with us parents. What will life be like? Will she walk or talk? Will she play like other kids? Will she understand what I am saying to her? Will she graduate from high school? What about prom and college and marriage? Will she live on her own or with us forever? And what happens when we are old and gone?

But aside from all these questions, this one also runs through our heads all the time...will she be included and accepted by her peers???

The last two years Bailee was in preschool with other special needs kids. They all got along and didn't seem to even notice differences, but this year she started kindergarten, and she is the only special needs kid in her entire class of 19!!! I feared the worst, and after only a few days of school, realized my fears were simply that, just fears. Bailee is so accepted and loved in her class, not only by the adults, but all her classmates too! They love to help Bailee with her reading, sit with her, play Legos with her, eat lunch with her...its amazing, and such a relief!!!

This weekend is a birthday party of one of her friends. Although I am nervous about going to Chuck E Cheese for the first time, especially with all those games and rides and a non-mobile little girl, I am so happy she is included!!!

I asked Bailee's aide what her classmate might like for a little birthday gift, and she said that Bailee coming would probably be the best gift ever for her!

Friday, October 14, 2011

A New Footing

With Bailee's cerebral palsy, she has severe physical delays. At 5 years old, she is currently testing at the 6-8 month level. She isn't sitting independently, crawling, standing, or walking. Its hard for us all, but she is trying really hard to figure out the cues to coordinate her body.

Having a physical disability is a challenge in itself, but then when you live in a home that doesn't accommodate any of their needs, this is a whole new challenge. As Bailee keeps growing its getting harder and harder to carry her through the house, plus she is five now and "Miss Independent"!

Unfortunately, home modifications take money, which is hard to find these days. Apparently those trees that grow money are few and far these days. We were able to apply for funding, and with the help of some very generous people and groups, the money came through to redo our floors. We have had carpet since we moved in over five years ago, and when we put Bailee in her gait trainer, she just stands there. Carpet is just way too hard for her to move her gait trainer on. So how will she ever be independent in her home when she can't move an inch?

So, as of yesterday, we are proud parents of a five year old who is using her gait trainer at home!!! We had beautiful laminate floors installed yesterday in our living room, down the hall, and in Bailee's room. So now shew will be able to go from room to room and practice using those little legs and have independence. Bailee was running in circles in the living room, SMILING!!! And she didn't want to get out of her gait trainer.

Thank you to all our donors! We couldn't have done it without your help!

The Moon

I have been so bad about posting recently, just so many things going on. So, I thought I would share one of Bailee's thoughts...I just love the way little kids imagine and talk about things.

As we were driving home the other evening, Bailee was getting a little cranky, so we asked her if she looked out the window what could she see.

Bailee replied "I see the moon!!! HEY! Its following me!!!"

Wednesday, September 14, 2011

Gaga for Hello Kitty

Friday night was complete with the smell of baking cupcakes throughout the house as Saturday was a day that we thought would be so much farther in the future...our little girl was turning five! Yes, five...five years old that is, felt like only about two years have passed, but the calendar says it really was five.

After several batches of cupcakes (fun fetti of course), covered with pink icing and completed with Hello Kitty faces, the end of the night came near, bringing Saturday soon after....PARTY DAY!!!!

This is the first year Bailee has really been excited about having a birthday party. Let me begin by telling you about how Hello Kitty was decided, or should I say compromised on, as a theme. Bailee loves Elmo...but we had Elmo for her 2nd birthday, thinking she would "grow out of" him after a few years...nope. As Bailee gets new interests, she doesn't give up the old....ever. She used to sleep with just a little Elmo, who she still refers to as little Elmo, which he is after all, only about 6-7" tall. Then she got her BIG ELMO from Auntie Erika, so he joined the crowd in the bed. He is about as big as Bailee. The rule is Big E must stay home, its way too much for me to carry her and Elmo, its like having two children...not ready for that....therefore, Big E must stay home, only on special occasions does he come out. Then came Mickey and Minnie Mouse joining the crowd.  And finally the most recent two, Hello Kitty (a big one as well) and then the cow from Maggie Moo's Ice Cream, which she loves for some odd reason. Hello Kitty has actually become quite popular, but has not replaced Elmo. Nothing does, and I fear may never. So upon asking Bailee what type of birthday party she wanted....response one.... "ELMO!!!"  Well, we already did Elmo, how about Hello Kitty? I asked Bailee. She excitedly responded with a big "YES!!!!!!!!"  Plus we could do a pink theme...Bailee's favorite color.

A week or so later, I asked Bailee again about the Hello Kitty theme, waiting for the enthusiastic "yes" we earlier had. Instead she replies (yes, this is coming from a four year old)..."I want a Lady Gaga Birthday Party." (---------insert long pause, and a few chuckles------------) Ummmmm.....well Bailee, I don't think they have Lady Gaga decorations in the stores around here, so how about we do Hello Kitty instead??? (Insert Bailee's UNenthusiastic response) "Oh, ok."

Great, so now we went from super excited about a birthday party for the first time in her life, and I have completely ruined it for her. So I think fast and say "Bailee? How about we have a Hello Kitty PINK party and we can listen to some Lady Gaga music too???" ---fingers crossed--- ENTHUSIASM RETURNS...."YES!!!!!" Whew...saved that one. Nevertheless, we had a wonderful 5th birthday party for Bailee, complete with Hello Kitty decor, PINK everywhere and yes, some Lady Gaga tunes to round off the day.

Tuesday, August 9, 2011

Push to Walk

Ah...the famous question we hear so often..."Is she walking yet?" One day, I really hope the answer will be "YES!"...but right now its still "no."

It really is pretty amazing how people and animals just learn to walk. Its just programmed in to our brains, and it happens. It takes time and skill for all babies to learn to walk, and some do it faster than others...and some not ever at all. In Bailee's case, it is like the "on" button just isn't automatically set to walk. Like on a hair dryer, every once in awhile you have to press the reset button for it to work. Bailee's button just needs to be located and switched to "walk."

Children with cerebral palsy can have a harder time accessing the command part of their brain that makes their body work. We just think (without even really thinking) to move a part of our body and it just works. Bailee has to concentrate so hard to try to get that same coordination happening, and some times it still doesn't work. There isn't a moment that passes during my day that I am not thinking about ways to help Bailee learn to walk. How can I find a way to locate that button inside her and push it? We can't just move her feet and hope her brain catches on to the process. We have to actually tap into the place inside of her that controls walking. And when we find that place, we have to find a way to stimulate it to go. At first, a little "buzz" of movement would be great...but how can we get the button to switch to "on" continuously?

One time I had someone tell me that we were actually lucky Bailee wasn't able to walk...that way we didn't have to chase her around the house and she couldn't get into things. I thought "Hmmm?" On the one hand, I see that what they were doing was trying to be positive about the situation we were in and find something good in it. On the other hand, I would much rather have her tearing the house apart and have the opportunity to chase her...because then she would be walking.

I understand walking isn't just going to make our life just poof into normalcy. But if Bailee could walk, it would open up so many opportunities for her. She is making good progress. Prior to her recent surgery she was stepping in the gait trainer, sitting independently for a bit, and standing strong. Since her surgery last month, her muscles are weak now and need to get strong again. This surgery is now giving her a stronger foundation for standing and walking since her hips are now straight and her muscles have been loosened. So now we just have to strengthen those legs and find that button and push it to walk.

"One day"...we keep telling ourselves..."it will happen." 

Saturday, July 30, 2011

Medicaid Woes

Ahh...Medicaid, SSI...the words we all hear and run away from crying in defeat before we even get started in the process. Getting Medicaid for Bailee has been one of the best and most challenging things I have done. I am hoping to be able to share the process here to help others succeed in this much needed benefit for their children. Please ask questions about the process, and post any tips you have. We are in Virginia, so this is specific to Virginia Medicaid, but many states have similar programs available.

The most important thing to remember...DON'T GIVE UP!!! I can't tell you how many times I was told no, you can't get this for your child...when in fact, we could. It was surprising, and sad, to see how little information was given to us, and how little many of the workers even knew. You have to do the digging yourself and push...just keep pushing. The help is there for your child, persevere, and you can make it happen.

I realized how much I was pursuing when I called our local Medicaid office one day and they recognized my voice without speaking more than a few words. I was never negative, and always said thank you....but never settled for the "no's" or the "it can't be done's."

Here is all the Medicaid and other services we have:

The EDCD (Elderly-Disabled Consumer Directed) waiver, and Bailee is also on the waiting list for the MR (mental retardation) waiver. If they are under 6 years old, they don't need a diagnosis of MR, just need have some delays, once they turn 6 they have to qualify with a diagnosis of MR. We have been on this waiting list for over 2 years now though, but I would get screened for both and get her on as many lists as possible. I believe you have to qualify to be on a waiting list first in order to get on the EDCD waiver. This waiver is designed to help in the process of getting a more permanent waiver. You can always turn it down when the time comes if you don't need it, or if they no longer qualify. Some parents refuse to have a diagnosis of MR and won't get the service because it requires that label...we as parents don't care what the doctors’ label Bailee with, we just need the help, and we know her and know that a label won't define her.

Call your local DMAS office. Tell them you need a screening for your child for the EDCD and MR waivers. As far as I know there is no waiting list for the EDCD waiver at this time, the only catch is they have to "re-qualify" each year, but that really isn't hard. We just did ours, and it was a little paperwork, but that's it. With the waivers, Medicaid is basically saying, “It doesn't matter how much money the parents make, as long as the children don't have savings, income, trust funds, etc....they qualify on needs not family income, and we recognize that families with special needs kids need this help.” In the end, it is the same Medicaid as low income families, but because of disability needs rather than income.

This is a link to the Uniform Assessment they will use.

Once you get the screening done, that part is usually pretty quick. You have to fill out the Medicaid application. Get in touch with your local Department of Social Services. I believe each County has their own. Remind them (a lot!) that it is for a Medicaid Waiver, and you shouldn't have to fill out all the parental income junk. Don’t let them tell you that you make too much money…this doesn’t matter for waivers! There is a medical portion, I believe, for the doctor to fill out, but all of it is pretty basic.

A few tips…be nice, be persistent, and don’t give up! Just plead your case, you do have to make your child sound like they REALLY need help and can't do anything for themselves...which is not always far from the truth. We just like to focus on the positives, so it's hard when they come in to interview you and you have to talk only about everything your child CAN'T do. Also, be polite...they get crabby over there dealing with so many cases. If you don't hear anything, call and get to know your case workers. I took Bailee down to the offices and let them meet her, then they had a face (and a cute smile too) to relate to. It really helped with their motivation, at least I think so!

After you get Medicaid waivers you get approved for a certain number of "respite" hours a year and also a weekly amount of hours. We got maximum for Bailee with her high needs which is 35 hrs. a week that Medicaid will pay someone for us to come in and help with care, cleaning, shopping, whatever you need. This can be a family member, just not immediate family. This is through PPL (public partnership)...but Blue Ridge Ind. Living (in our area) sets all this up, and they have been pretty good helping in the process.

Also, if you get Medicaid you will automatically qualify for WIC. We just found this out, and the kids only get it until they are 5. But it gives you coupons for some basic food each month...milk, cheese, fruit, bread, peanut butter, juice, cereal and eggs too. It isn’t a bunch, but it really does help. So you have to get in touch with your local health dept. for this, set up the meeting (after you get approved) and go down there with the kids and set it all up. They give you about 3 months of coupons at a time. You get a list of “okay” foods and brands, and most stores have them labeled. I recommend Food Lion and Kroger. Walmart has more cereal choices, but a manager always has to come and verify everything, which can really hold up the line. The other local grocery stores are a little easier to get through.

Another great thing we have is gas reimbursement. This is through Logisticare Virginia. This you can get automatically as well, but no one told us this. You call ahead of time and get reference numbers for your trips to the doctor or therapy appointment for your child, and then log it on the sheet, have the office sign off on it, mail it in, and they reimburse $.40/mile. Here is the link for more information:

One more BIG one!!! If you have your child on your insurance you can qualify for premium reimbursement, which also reimburses your portion as well. It’s called HIPP (Health Insurance Premium Payment). We have HIPP FOR KIDS which will not only reimburses the premium, but also both my and Ben's co pays, balances, deductibles, prescriptions, etc. It’s really great! You have to send in your paystubs each month to them, but it’s really not a hard thing to do to get this great benefit! Here is the link to their information:

Once you have Medicaid you can also get Social Security checks for your child. This is the hard one and has been my biggest headache. It is dependent on parents’ income and resources, so they count car values, money in the bank, income each month, home values, mortgage, etc…you can't have any’s tricky. I really can't stand working with them, but it does help some each month. You have to send in paystubs, like the HIPP program. But if you have a fluctuating income, where you work overtime, it can get hard. They amount you receive each month varies based on your income…which makes sense. However, the computer is really just guessing for what you make, basing its’ guess on what you earned two months ago! So if you make a small amount in January, then they assume in March you will still get that same basic amount, and send you a big check (maximum is around $620.00 I think per month). Then, surprise, they actually input your paystub amount (which you send each month) and they said they over paid you, and now you owe them money! Or, it works opposite…you make extra in January from working overtime, and they said you get nothing, and then the computer assumes you will make 3x your usual amount, and they won’t give you anything for 3 months.

I have not found a way around this. I just doesn’t make sense. I haven’t figured out why they require us to send paystubs in, but actually don’t use them to do the calculations. And they will send a letter saying they overpaid you a year ago…so that’s a fun surprise! The amount you get also varies when your bank account changes. They recommend not having more than $2000.00 in your account…EVER! So, they are basically telling us we can’t save any money for a handicapped van, home modifications, a larger, handicapped accessible home, or a power wheelchair…because if we do save, and try to be responsible, they will take our benefit away. My advice: Be careful with SSI…And keep a big stock of Ibuprofen for all those headaches they create.


Wednesday, July 27, 2011

Little Ballerina

When we were about 20 weeks pregnant we decided we wanted to know if it was a boy or girl. I couldn't wait to find out! I had a feeling we would be having a little girl, and sure enough...we did! When we first heard the news of a girl, I immediately starting seeing the entire world in pink...filled with unicorns, ruffles, pink polka dots, pigtails, ponies, and of course tutus! It seems that all moms probably dream of their little girls up on stage in their little pink tutus, a big grand recital in front of the whole family...dancing, twirling, or just standing still looking adorable.

When Bailee was diagnosed with cerebral palsy, it was a moment that came and went by so fast, but at the same time was a moment in slow motion. For some reason, when you hear your child has a disability and might never walk, you begin thinking so fast about so many things....What do you mean she might not walk? Maybe she will walk. If she doesn't will she get to go to prom? Will she go to the daddy-daughter dances? Will she get to walk down the aisle and get married? Even though she wasn't even a month old yet, I found these thoughts entering my mind and they haven't left since.

The pink polka dots, unicorns, ruffles, pigtails and ponies were still strong in my picture of the future. We started hippotherapy with Bailee a few years ago and she loved it! She loves riding her horses, and it has been wonderful therapy. And of course, we can't forget...her favorite color is pink. The tutus, however, and the dancing on stage was something I let slip away to the back of my mind, realizing girls with cerebral palsy don't usually have an opportunity to dance like all the other little girls.

One day at the therapy clinic I noticed a flyer from our local dance school, Floyd Ward, for a dance class for special needs children. What!? Did I read it heart fluttered a bit at the idea of Bailee getting to be in a dance class. I jotted down the number and went on my way. The next day, after a wave of emotions of pure excitement of the possibilities this could bring, I gave the school a call. It was a brand new class they were starting, and we were signed up to start the following Saturday!

After a long week, the anticipated Saturday morning finally arrived. We arrived early, and our lives have not been the same since that day last year. We have a child with a disability, doing something we never imagined possible...Bailee is dancing! Bring on the TUTUS!!!

To put into words the experience we have had is near impossible. How do you write about the feeling you get when you see your little girl, who cannot sit alone, or walk, twirling around the room in a dancers arms....smiling the entire time from ear to ear? There really are no words to describe it. It has been an amazing opportunity. Every Saturday Bailee cannot wait to put on her PINK tutu and go to dance class.

The school just had is annual recital in June and Bailee's class participated. When those six girls when out on stage, it was one of the most spectacular moments. They were all dressed up in their costumes, complete with makeup. Each girl had their own assigned "helpers" to dance with them each week and at the recital. The music started and the girls were all so beautiful. There wasn't a dry eye in the entire auditorium. They danced to the song "True Colors" and were called the Angels from Heaven class. All the girls on stage were Angels that night...both the girls with special needs and the girls with special hearts to give their Saturday mornings to help our little angels have an opportunity to shine.

When you get to witness something so pure and genuinely heartfelt, it's indescribable what it does to you. Bailee was dancing in the front...with her helper Miss Kirsten guiding and moving her body through each move. She was just glowing! It didn't matter that Bailee couldn't sit alone, or walk, or even lift her arm up...she was a Ballerina, and she was beautiful!

Stumbo Family Story

Tuesday, July 26, 2011

►► Fast Forward A Bit...

So, fast forward a few years, add in a smorgasborg of therapies, doctors, alternative treatments and here we are today. We have a beautiful four year old, or "almost five year old" That is what Bailee says when you ask her old she is, holding up her little hand trying to open it all the way up.

We have done years of therapies including them all...physical, occupational, speech, hippotherapy, pool therapy, treadmill training...the list goes on. There has never been a moment when I have regretted any of it, or trying anything, or the rigorous schedule we have going three, four, five times a week to different therapies, every week for the last four years.

We have been to all the regular doctors for Bailee, plus pretty much any that end in "ologist". Add in multiple regular brain ultrasounds, MRIs, trips to UVA's Kluge Center, which we love, weight checks, and other routine things. We also did two rounds of hyperbarics at Charlotte Metro Hyperbarics, and most recently Bailee's first surgery, a bilateral de-rotational femoral osteotomy.

To say the least it has kept us busy. We definitely didn't expect to have this life, but have learned so many things from having a special little girl like Bailee. She is a wonderful child and is a blessing to be in our lives. She is always smiling, and always bringing a smile to others.

Thursday, February 3, 2011

ruby Tuesdays To Go Please

My pregnancy was going great. Other than having to get up six times a night to pee, I was feeling really good. I was finally starting to look pregnant. My maternity pants were still falling down, but I was proud to wear them, saggy butt and all. My baby shower was set for September 23. We had so much fun registering at Target for all the cute girly stuff.

We decided to go out to eat with my husband’s mom and her husband. After all…I had a great reason to eat what I wanted! What better place to go than Ruby Tuesdays where I could get an endless supply of ranch dressing and pumpernickel croutons! I might throw a little lettuce on there to balance the color, but the ranch dressing, croutons and a little… okay, a lot, of shredded cheese…delightful! I remember eating and not feeling too good. I excused myself and went to the restroom. I was just having some discomfort. My mother-in-law said the baby was probably moving and settling down more. It made sense. I was disappointed after making only one trip to the salad bar and still having a full plate of food, knowing I just couldn’t eat any more. What’s the point of all you can eat ranch and not being able to eat it??? Trying to be polite, I remained quiet. Towards the end of the meal I told my husband I just needed to go rest. We left and went home.

We probably got home around 9pm that Monday night. I still wasn’t feeling good and noticed I was feeling a little worse. Maybe the ranch was bad, I thought. I went to bed to lie down, but couldn’t get comfortable. I was cramping inside and just felt weird. After an hour of trying to “feel better” my husband convinced me to call my doctor and see what they recommended. I talked to the on-call nurse she told me to come to the hospital, just to be safe.

Into the car we went. My husband, who was a little panicked, somehow made a 40 minute drive last only 18 minutes. We were there in a jiffy, and I was glad. My pain was worse. Could these be contractions? Geez, I hope not. We were only 29 weeks along! We had at least 10 more weeks to go. I kept calm. Since I had never had a baby before, I didn’t know what my body was doing. We walked up to the maternity ward. I put on a gown and they hooked me up to a monitor. I was indeed having contractions, so they paged the doctor to come in to the hospital. It was probably about midnight at this point when the doctor arrived. She checked me for any dilation and looked at us and said “Eight and a half.” We looked at each other with confusion. Eight and a half what…more weeks for her to be in there? Eight and a half minutes before you come back in? Nope, I was dilated eight and a half centimeters. There was no turning back…she was coming…SOON! They gave me some meds to try to slow it down, but it didn’t work. Unfortunately the hospital we were at did not have a NICU. The doctor wouldn’t send me in the ambulance to the other hospital across town for fear I would have a preemie in the ambulance. So here we were preparing for our little, very little girl to enter the world early…too early.

They moved me to a delivery room and got it all set up. The nurse asked if I had my birthing class and if I knew what to do. Uh…no! The class was scheduled to start in a few weeks! I kept my composure. My husband by my side, the contractions came faster and stronger. I need ice chips…back pain…massage…no, fan me; I am passing out…ice again! He was awesome. I knew he was stressed, but he was so strong and helpful. Within five hours of getting to the hospital our little girl was born. There was no time for an epidural or any other meds. There was just enough time for me to call my parents and for them make the drive to the hospital to be a part of their first grandchild’s entrance to the world.

Bailee Elizabeth was born at 5:22am on September 12, 2006. She weighed just two and a half pounds. She was tiny. She was so small that we didn’t get to hold her, they just rushed her to an incubator to check her over. She was so tiny. She had ten tiny fingers and ten tiny toes. And then we said goodbye as they took her to the ambulance to rush her across town to the NICU. How would I even know which baby she was? We barely got to see her for five minutes and she was gone.

The doctors said she was stable and doing very well, but I was still stuck at my hospital and she was across town. I managed to get some rest, I was exhausted and stressed. My husband and her grandparents were able to go see her and brought pictures for me to see. It was so difficult seeing other people with her when I couldn’t be there myself.

I was released the next morning from the hospital. I was doing really good, but didn’t care. I was only worried about seeing Bailee. We went across town for me to see her for the second “first” time. She was in an incubator, with a NG tube for feeding and all sorts of wires and monitors on her. She was so small she didn’t even fit in the real preemie diapers. She had this tiny diaper on that looked more like a miniature maxi pad than a diaper. She was so tiny and so strong at the same time. We got to hold her for the first time. It was so special for us. She was so small and didn’t even weigh three pounds. It didn’t even feel like we were holding anything. It felt so right though. So, this is what it felt like to hold your baby for the first time. She slept quietly in our arms with the only noise around us coming from all the monitors regulating her and the other babies. We never wanted to put her down.

We only got to hold her once a day. Since she was so small she couldn’t stay warm. We were limited to 10 minutes a day, which we shared between the two of us. It was the most anticipated and joyous ten minutes of our day.

Bailee’s lungs were great and she was breathing on her own. We were relieved she was doing so well. After only a few days she was moved downstairs to the less intensive NICU. We had our little celebration for her progress. After the first week in the NICU and a lot of driving back and forth to the hospital for multiple visits each day, it was time for her first head ultrasound. With premature babies there is a high risk of complications during the birth. The vascular systems in their brains aren’t as developed and when they are born and the umbilical cord is cut, the extra blood flow through their bodies can cause bleeds in the brain. The day of her ultrasound came upon us quick, but has never really left us. It is still as clear as it was years ago. Her results came back that she had a brain bleed on the right side of her brain. The doctors labeled it as Stage IV IVH…which is Intraventricular hemorrhage. Stage IV is the most severe and means that the bleed was severe enough to go outside the ventricles and bleed into the brain. Bailee was also diagnosed with Bi-lateral PVL, or Periventricular leukomalacia. This is a term give to brain injury around the ventricles. In babies born before 32 weeks gestation, their ventricles are very fragile and PVL can result from premature birth.

The new diagnosis’ came at us fast. We really didn’t know what the doctors were telling us. Our little angel had a severe brain bleed and brain damage from being born too early? But what did this mean for her? Then her doctors told us something we had never expected to hear…“Your child has cerebral palsy.”

Wednesday, February 2, 2011

The beginning...

It all began in March of 2006. I woke up at 2am one evening in excruciating pain. I called out to my husband from the bathroom..."I am dying in!" The pain subsided after 30 minutes or so. I went back to bed. The next morning, 2am came and so did the same pain. I was up again. I was passing out, sweating, the whole works. It too went away after 30 or 40 minutes. Night three...2am came...nothing. "Whew!" I thought to myself and went back to sleep. Then at it is again. This time my husband took me to the ER. I couldn't take it anymore. I had already had my appendix out several years ago, so it couldn't be that, but what could be causing this? It felt just like my appendicitis. Maybe they didn't really remove it years ago. Maybe they just spiffed it up a bit and sewed me back up. It could be possible, but probably wasn't the case. After hours at the hospital, blood work, the whole gammit (and some pain meds) the doctor came in. He told me that he thought I had a bad ovarian cyst and that I was also pregnant. Wow, a cyst I thought? That is a lot of pain coming from my ovary. Wait, what??? Pregnant. I was actually preggers. We hadn't been "trying" with the whole cycle calculator and all, but we both hoping for a baby. Our hopes had turned into reality.

This was our first pregnancy, so I didn't know what to expect, or how I would feel. I was a little disappointed that I didn't get to pee on the stick and wait to watch it change colors...but we were very excited about having our first child. We had a few more tests and ultrasounds to confirm and were told we were already about six weeks along. Our due date was November 23, 2006.

Each week would come and go. I kept Cheez-Its by my bedside and would grab a few during the night and first thing in the morning before I even got out of bed. I signed up for prenatal yoga, which was wonderful, and felt great. My biggest concerns were that our due date was November 23...that was Thanksgiving Day! And also, as a cellist and the manager of our orchestra, when would our Fall concert be? We usually have it right before Thanksgiving, but I would be really pregnant and as the principal cellist I need to be 100%. Our answer...schedule the orchestra concert in October and have Thanksgiving the weekend before. I wasn't going to miss the concert or my turkey and stuffing!

As Spring turned to Summer, we bought our first home and moved from our apartment. We were all doing great. As my belly grew we knew it would be time to find out if we were having a boy or a girl. Ultrasound day came with great excitement...and we found out we were having a GIRL! What would we call her? Will she have a pink room? Will she even like pink? Maybe we should go neutral with the colors? No, pink it will be, and I will throw in a splash of green. The green would help her Daddy feel a little more masculine.

As we went for more routine ultrasounds the doctors noticed her ventricles in her brain were enlarged. This came as a shock to us. What did this even mean? They ran more tests. The enlargement wasn't big enough to be consider hydrocephalus, but it was something irregular that needed to be monitored. We visited the prenatal specialist on a bi-monthly basis. They were concerned about the possibility of down syndrome and other genetic problems. We had them run a few blood tests, but chose not to have an amnio. The down's test came back negative, which was great news, but we didn't know what was causing the enlargement. We went to bed every night and hoped for the best.

As the pregnancy progressed even further, her ventricles stayed a little large, but consistent. We would keep an eye on them each month. The doctors felt she was stable and we had nothing to worry about. We were so relieved...whew. What a weight lifted off us. With the stress lessening...we could focus on the fun stuff, like painting, picking out furniture and filling her closet with little girl clothes!