Mighty Mom: Jen

Mighty Bee: CeCe

When did you first find out you were pregnant? How was the duration of your pregnancy? 

I first found out in March of 2010 that I was pregnant with CeCe. We were told at 18 weeks gestation (on June 29th of that year) at what was supposed to be a routine anatomy ultrasound that she had a “hole in her spine” or Spina Bifida.  The pregnancy was EXTREMELY difficult from the standpoint of all the testing that was immediately involved…hours of MRIs, ultrasounds, 2 amnios etc. and the prognoses we were getting were all the same, terrible.

I did not know anything about the NICU before my internship with Bee Mighty.

How much did you know about the NICU? And when did you learn you may deliver your baby early? 

I knew nothing about NICU.  Our first daughter, born 2 years earlier, was a very routine pregnancy.  Information was given to us that same day of the diagnosis about a research study at the Children’s Hospital of Philadelphia (CHOP) regarding fetal surgery for our daughter. CeCe was full-term (38 weeks, 5 days), but stayed in the NICU in Philly for 9 days and had her first of 4 surgeries there as well when she was 48 hours old.

Tell us about CeCe’s birth and seeing her for the first time. How much did she weigh?

I didn’t get to hold her when she was born because of the hole in her spine.  They let me touch her skin and she was whisked away to the NICU and for further discussion about when to close her back (has to be within 48 hours of birth to reduce chances of infection).  I really only remember touching her for a moment.  She weighed in at a whooping (and lucky!) 7lbs and 11oz….she was the giant of the NICU.

What was it like the first time getting to hold your daughter?  

It was 2 days and a surgery later until I got to hold her and I was so scared.  Even though she wasn’t my first child and I wasn’t nervous about that, she just seemed so fragile.  The wires and monitors that covered her were so intimidating…I was sure I’d pulled something out and cause worry or issue for the nursing staff.

How much time did CeCe spend at the NICU before she could go home? 

9 days.

What was it like to bring your baby home? 

Scary.  We had to fly home, of course and that alone with a typical 12 day old is unheard of! She was so good though and the flight was half empty with an extremely accommodating and helpful flight crew.

During your NICU stay and even have your family was home, what has been your biggest fear? 

CeCe had to have specialist after specialist come and assess her per her diagnosis and our participation in the research study.  I made mental notes each time someone came by and gave her the thumbs up.  My worst fear was that the prognosis (the TERRIBLE prognosis) was going to be confirmed!

For families who cannot imagine, explain how life is having a baby in the NICU? What was the adjustment period like?  

I slept there.  Each night I put my name is a hat and some unknown “powers that be” decided in a lottery-like system who would be the lucky recipient of a sleeping room. My husband took care of our older daughter and they stayed at a Ronald McDonald house…I couldn’t leave this child’s side. When you are discharged there is both a huge sense of relief and panic…you hate being there, but you know the care and expertise you are receiving are world-renown.  When the Drs. round the morning you learn you are going to be discharged, you panic. You re-learn to breathe and pray you remember all they’ve taught you to do to take care of this child’s needs.  When we were home…every wheeze, whimper, cough, rash was cause for worry with this child…three more surgeries (two of them were brain surgeries) were to come and we were on constant watch for signs and symptoms.

Your story will be inspirational to other parents walking in your footsteps.  Do you have any advice for parents currently going through having a baby in the NICU?

REACH OUT!  Ask questions and take notes when the Drs. Visit.  You will need them and refer to the often.  I changed careers because of this experience.  What I was doing for a living seemed trite and meaningless.  It changed who I am.

Could you tell me about your daughter today? 

HA!  She is “sass” personified!  CeCe does not know a stranger and is often described as an old soul.  All the things the Drs. told us she’s never do….she’s DONE!  She is funny, thoughtful, considerate and knows her mind.  The only trait that outweighs her sassiness is her obstinance.  But that has served her well when it some to all her therapists pushing her to higher and higher levels.  She doesn’t quit. Period.

How has Bee Mighty impacted your journey with CeCe? 

They’ve allowed us to take her back for a therapy that is both necessary and one she enjoys…Hippotherapy.  She was crushed when we told her that our insurance would no longer cover her therapy and she wouldn’t be able to ride her pony, Willy, anymore.  They’ve given that joy back to her!

CeCe was our VIP at the Kendra Scott event.  Would you share what she designed at the event? 

Heck, yeah! It was awesome!  She chose a bracelet and a necklace…all the stones in both pieces were pink and purple (all 4 year old girl’s favorites, I guess). She decided to donate both pieces she designed (the bracelet was hers to keep).  But she told me she wanted to help others and added the bracelet back to the necklace set to be auctioned off! She never ceases to amaze me!

Thank you, Jen. Thank you for sharing your journey with Bee Mighty. You will inspiration to many walking in your footsteps. Bee Mighty is also are honored to have your family as our ‘Featured Family’ and VIP at the Kendra Scott event this month. Thank you, sincerely, for sharing your strength, determination and story with Bee Mighty.

Interview by Katie Hyland