Friday, September 19, 2008

From Tiny to Mighty: Darsie Turns Four!

Today is pretty monumental around this household as Darsie Ferrari W. turns FOUR! FOUR! I can't even believe it.

I found out I was pregnant with Darsie a couple of weeks after Jeff and I had moved into our first home. We were already in shell shock about everything that goes along with buying your first house (especially a fixer-upper) and then this. Boy, we were surprised. Our world changed even more in just a few moments. I had already helped paint, move a fridge, had had celebratory wine! I had already broken all the rules! The baby was due December 10th.

An uneventful pregnancy progressed. I had all the regular doctor visits, we found out we were having a girl! I had afternoon sickness, couldn't stomach garlic or onions (much to Jeff's chagrin). Late August we pulled up the carpet in our living room and put down a Pergo floor and installed a pellet stove. My belly grew.

The third week of September I had a doctor appointment where my blood pressure was high, even after multiple retakes. Blood was drawn, urine was tested, everything came back fine. I was told to keep an eye on it and to call if it got above a certain point or I started experiencing a long list of symptoms. We thought it was just stress. Nothing to be concerned about, right? I was 27 weeks pregnant.

Friday, September 17th we went after work to a Mariner's game with a couple we are good friends with. I think the Mariner's lost, all I really remember is REALLY REALLY wanting a churro and walking the arena repeatedly looking for this churro.

I had a horrible night. My shoulder hurt, I couldn't sleep, I was achy -- something just wasn't right. Jeff woke up in the morning and I relayed how I was feeling. We took my blood pressure and I was sure that my machine was broken. I can't remember the exact number, but it wasn't possible for blood pressure to be THAT high, right? Still, with everything I was feeling, I knew that something was wonky. I called into the doctor and was told that I needed to get a reliable blood pressure reading so Jeff hauled me off to the local fire station and they confirmed that it was high. Off to the hospital it was for us.

We took a ferry (missing it by seconds, even though we told them to hold the ferry as it was a medical emergency) and I was admitted immediately. I was already spilling protein in my urine. My blood pressure was indeed super high (I need to get the numbers from Jeff at some point). I was given a steroid shot for the baby's lungs within an hour of arrival. At this point, I was told we were just trying to hold on for as long as possible, keep the baby inside until it wasn't safe anymore. I was sick. The baby was sick. We called family and mine made a lightening trip up from California, simply arriving at the airport and telling them they needed to get to Washington, however, but as quickly as possible.

The night passed. There was a ton of monitoring, tons of blood tests. The news was that the baby was starting to show signs of stress. Today was the day that our baby, that we had named Darsie, was going to be born. My c-section was pushed back due to an emergency c-section. And so, at around 9pm, our baby Darsie was born at just 28 weeks. She weighed 1lb. 12oz.. Immediately she was intubated and taken to the NICU to be stabilized. On my way back from recovery, they took my bed up to the NICU and let me see her, beautiful under all those tubes and wires and beeping lights.


I remained in the hospital another week trying to get my blood pressure under control and stabilized. I was ultimately diagnosed with HELLP syndrome. While still in the hospital, we learned that our beautiful and perfect baby girl had experienced a major bleed in her brain, a grade IV IVH as was called. The worst grade of bleed diagnosed on the left side of her brain. We were given dire predictions and horrible outcomes. We were crushed. We were devastated. What did the future hold for us? What did it hold for our little girl? Nobody could tell us. Nobody would give us much hope.

We held her, we loved her, we knew that everything would be ok. She was perfect.













She grew, she thrived, and the day before Thanksgiving, she came home. Jeff kept her home and with minimal visits until Easter. We were stuck at home but we were keeping our baby girl healthy.

Jeff and I were married the following June and Darsie turned one in September. A diagnosis of hemiplegia cerebral palsy came. We weren't surprised. She simply wasn't meeting milestones and due to her early birth and bleed, she had been followed closely. We were expecting something.


She sat unassisted for the first time on her first birthday. She started playgroup at the Early Intervention center. She started OT through the Elks, eventually she started PT. She continued to thrive, to grow, to develop. She rolled everywhere until she finally in the later part of this year, crawled.


She turned two. Walked shortly after her second birthday. Continued her therapies, worked on some hydrotherapy stuff with Sheila, our Elk's OT. We had another baby, Elise.



She turned three. Went to the developmental preschool that is run through the school district. She rode the bus.


And today she is four. She isn't potty trained but we are working on it. She is a beautiful girl who loves her sister, her doo-doo (Papa), and her mama. She loves to color, she loves to draw, she loves to help. She loves the outside, riding her bike or her quad. She is great. I wouldn't change her any way. We had such terrible outcomes and while she has CP, she is Darsie. She is who she is. We still do PT once a week and she goes to developmental preschool. I wish you could all see who she is because she is wonderful.



She will always be my baby girl, my missy boo, my Darsie-doodle. I love her with every fiber of my being. I'm so lucky to know her and to love her and to spend everyday with her.

Happy birthday, Darsie! Happy FOUR! I can't wait to see what the future holds for you, or rather, what YOU hold for the future.

17 comments:

Christine said...

What an awesome story, I am moved. The potty traing takes a lot of time. Regan didn't fully get ot until age 7, but i can tell you the celebration of no more pull-ups was huge! Good luck as she continues her milestones

Nowheymama said...

I CANNOT believe she is four! I love all of the pictures, especially the ones of you holding her in the hospital. Beautiful.

Sarah said...

Happy, HAPPY birthday to Miss Darsie! I hope you guys have an awesome HAPPY day.

(As an aside, I'm impressed that you remember the trip through the NICU. I have ZERO memory of it and I think I'm glad - it means I have no memory of S on the oscillator, since I didn't manage to get BACK to the NICU for about 48 hours after that.)

Pickles and Dimes said...

Happy birthday, Darsie!

That is an incredible story, and she is an incredible girl.

I loved that photo of her in the hospital where it looks like she is smiling (the 10th one down).

Mommy Daisy said...

Happy Birthday Darcie! She's a beautiful precious girl. I love the story about her arrival. Not what you planned, but perfect because it made Darcie who she is.

Bird said...

Darsie is nothing short of incredible. I have no doubt that she has inspired many others the way she has me. Horray for Darsie--turning four. Thanks, also, for sharing her birth story with us all.

Anonymous said...

Oh Sweet Shannon...I love you so much!!! Your story makes me cry, what a thing to go through! The pic of you holding Darcie in the hospital is the most beautiful pic ever!
I wish I could meet the birthday girl, please let her know that a stranger named Kyra is wishing her all the happiness in the world!!! My Chloe turn 4 tomarrow...wish we could get them together!
I love you!
xoxoxoxoxox
Love Kyra

bettyninja said...

Amazing little girl you have and amazing mom you are to her. (and Doo-doo too of course)

Swistle said...

She is SUCH a doll.

~Denise~ said...

Big Birthday wishes to that special little girl!

Denise

ashleyrae41 said...

I think Darsie is the most beautiful, caring, and funny little girl I have ever met. I believe because of the love that you and Jeff have for each other and Darsie that this miracle has evolved. I feel blessed to know your family and to be a friend!
Love,
Ashley

jamie said...

happy birthday darcie....she is such a cutie!

jamie said...

happy birthday darcie....she is such a cutie!

jb said...

Happy belated birthday, Darsie! Isn't it amazing looking at each of their birthday pictures and seeing how much they've changed in the past year? I think it's all the more amazing when the child has CP or a similar diagnosis. Here's to another great year!

JB - Mom to D, pediatric stroke survivor with left - sided hemi

jb said...

Happy belated birthday, Darsie! Isn't it amazing looking at each of their birthday pictures and seeing how much they've changed in the past year? I think it's all the more amazing when the child has CP or a similar diagnosis. Here's to another great year!

JB - Mom to D, pediatric stroke survivor with left - sided hemi

Autum said...

Happy Birthday sweet Darsie!!

Shannon, thank you so much for sharing Darsie's birth story with us. I am a former NICU nurse and your words and photos really tugged at my heart!

Nelba said...

Shannon, I know I way late. But I just wanted to tell you that I cried reading this. I'm so glad Darsie's in this world. And happy birthday!

Your blog was the first I stumbled upon after Loren was born. You've come such a long way.