A New Normal

I don’t remember the date but I sure remember the day!

I was sitting at China Bell eating lunch with my grandma when my phone rang.

It was my husband “the doctor is trying to get a hold of you, something about Caitlyn’s test results.”

 “Is it good or bad?” I asked.

His voice became a little stuttered “they said something about one of her chromosomes, something like a deletion on line 22. I don’t know, I’m at work so I didn’t have a lot of time to talk to them. Call and let me know what’s going on.”

My heart sank and I couldn’t finish my lunch. I quickly ended the call with my husband so that I could call the doctor and of course I got the voice mail. I left a message of pleading to the doctor to please call me as soon as possible.

Thankfully she called back immediately and right away began to explain the results of the genetic testing they had done on Catie the week before.

Let me back track a little….

Caitlyn was born on July 28, 2002 (3 wks early) I went in for a routine check up.

My plan was to return to work as soon as my appointment was over.

The doctor came in, just as she did all the times before.

She began by weighing me, taking my blood pressure and proceeded by measuring my tummy.

That’s when the appointment became “different” than the previous ones.

She explained that the measurement had gone up way too much from the week before.

They rushed me to ultra sound and decided that I had polyhydramnios,

which means there was too much amniotic fluid surrounding the baby.

It was a dangerously high level!

The feeling I had then was the same feeling I got the day the doctor called me (8years later) with the results of  Caitlyn’s genetic testing.

Long story short, I was induced that day.

Caitlyn was born a few hours later and rushed to the NIC U for observation.

The next time I saw her she had wires (oxygen, feeding tube and IVs) and she was surrounded by beeping machines.

I wasn’t allowed to touch her or hold her because they didn’t want anyone interfering with her getting well.

She had “coded” on them during observation

and before allowing us in the room with her, they had to get her stable.

(This pic was taken right before they put the oxygen, IVs and feeding tube in)

 (nurse checking her vitals)

(mawmaw came to visit)

We spent about a week there and Caitlyn became healthy enough to take home. I was so grateful that God had touched her little body.

When she was 3 months old we ended up back in the hospital, she was struggling to breathe and had an extremely high fever that would not break. The docs were running all kinds of tests and trying hard to get her fever down to a normal level.

It was a very scary time!

I remember standing in the hall, hearing my baby scream and cry (daddy was with her) while they were trying to find a place to put an IV.

Her veins were so tiny, they finally (after 4 sticks) decided to put an IV in her little head.

When I saw her, my heart felt like it crumbled.

Her and I stayed at the hospital for over a week while the docs did all they could do to get her better.

Daddy would come every evening after work and stay until time to go to work the next morning.

After lots of praying and lots of tests, they diagnosed her with RSV.

She got well enough to go home but

she ended up being hospitalized a couple of times more with RSV in the later months.

As she got a little older (age 2) she still struggled with breathing from time to time and was diagnosed with asthma. She had lots of ear infections and seemed to be sick alot more than her younger sister.

She had 3 surgeries for ear tubes to try to help with the infections.

She had surgery on her eyes to remove the chalazions (lump in the eyelid) that just wouldn’t go away and she had surgery to remove adenoids and later a surgery to remove her tonsils.

After meds and surgeries things seemed to be going well for a little while.

Then came her 7 year old check up with her pediatrician.

She weighed her and measured her and immediately sent us to the hospital for a bone scan and blood work.

After a year of different Specialists and Tests, we were referred to a geneticist.

They sent us to the lab for more blood work.

This brings us back to the phone call.

The doctor began to speak “Well we found the problem, you’re daughter has a genetic syndrome.”

She said more but to be honest I can’t remember much of what she said after that.

Once again my heart crumbled and hot tears ran down my face in the middle of China Bell.

I felt sick and confused.

I walked out to get some air and try to process what I was going to say to my husband.

All kinds of thoughts ran through my mind.

What did we do wrong? How could this happen to us? WHY?!

I called my husband and relayed the news.

He asked questions that I didn’t know the answers to and we both felt nervous and unsure of what this meant for us and our family and most of all, Her!

Once the initial shock was over I reminded myself of how special and perfect she is to us!

In the weeks to come we spent hours at the hospital for more blood draws and tests including Echocardiogram, Renal Ultra Sound, X rays and much more testing.

She was very brave during that time!

We have been extremely blessed in the fact that Caitlyn does not have a major heart defect like lots of children with 22q 11.2 Deletion Syndrome do.

She has an “innocent” murmur but nothing life threatening.

She also does not have any kidney problems, we are so thankful for that as well!

Life has changed for her and our entire family, we now have a “new normal.” Our schedule consists of lots of hospital visits, doctors appointments, specialists, blood draws, therapies, check ups and whatever else may be necessary at the given time.

I feel absolutely 100% Blessed that God chose Scott and I to be her parents!

She is completely perfect just like our 3 other children and she

has made me one happy momma!

Through this diagnosis I have learned not to take life and health for granted!

I have learned alot about chromosomes and lack thereof.

I know more about genetics and DNA than I

ever learned in school.

I am sure I still have LOTS to learn!

One thing I know for sure is…

We are all different in some way or another!

(This pic was taken at Children’s Hospital)

There are days it is still a struggle and she isn’t feeling so brave

and to be honest, neither am I.

But she does love when daddy gets to come with us to an appointment from time to time!

That definitely puts a smile on her face!

We are living our “new normal” with grateful hearts and thankful minds!

A couple of years ago, we were privileged to attend the conference held at Nationwide Children’s Hospital here in Columbus to meet other “22Q Families!”

Her sisters enjoyed it too!

Caitlyn like all of us has been created in the image of God!

Genesis 1:27

So God created man in his own image, in the image of God created he him; male and female created he them.

How awesome is that!

She is a little super hero for sure!

“Accept the children the way we accept trees—with gratitude, because they are a blessing—but do not have expectations or desires. You don’t expect trees to change, you love them as they are.”

― Isabel Allende

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