Neonatal Intensive Care Awareness Month

September is Neonatal Intensive Care Awareness Month (it is shared with the VERY IMPORTANT Childhood Cancer Awareness Month).  Two extremely important topics.  I can speak of NICU Awareness because I lived it.  My good friend, Stephanie, can and always has spoken about Childhood Cancer Awareness month because her son, Tanner, fought childhood cancer. 

Steph is someone I greatly admire because she fought this ugly disease WITH her son and even with Tanner being in remission now, she continues to fight it for all of the other children fighting this horrible battle.  She started a foundation and it is remarkable and I am so proud to call her my friend and someone I look up to as a mom AND advocate.  Here is her foundation: https://www.tannerstouch.org

Speaking on NICU Awareness Month, I have read so many amazing articles and blog posts this month that just really touch my heart.  They speak my truth.  Unless you have lived the NICU experience (or have a close family member that did) you don't really know how hard it can be as a parent OR as the baby fighting.  The NICU is not just for preemies, it is also for full term infants who could have one (or more) of many different issues (heart defects, breathing issues, genetic disorders...).  My personal experience with the NICU started with my niece, Jolie, who was born with a congenital heart defect called, Ebstein Malformation of the Tricuspid Valve (http://www.mayoclinic.org/diseases-conditions/ebsteins-anomaly/symptoms-causes/dxc-20199188) AND Wolff-Parkinson-White Syndrome (WPW) (http://www.mayoclinic.org/diseases-conditions/wolff-parkinson-white-syndrome/home/ovc-20265961).  My second experience was the premature birth of my niece, Magdalene.  She was born at 25 weeks and spent the first few months of her life in the GBMC NICU. 

 

My last experience, as known, was the birth of my twins, Jace and Eliana, at 27 weeks 3 days.  I experienced both ends in the NICU; a tragedy with the loss of my sweet Jace and a miracle with the fight for life and eventual turn around to health, of my sweet Eliana.

 

What can I say about our NICU experience.  It was so many things.  Traumatizing and heartbreaking.  I gave birth to my twins prematurely, I never expected that to happen.  My babies were supposed to be with ME.  But instead, they were in an Isolette that was supposed to mimic my womb.  They were hooked up to machines, iv's, beeps and noises all around them.  They were having their diapers changed and temperature taken by nurses and doctors.  They were fighting for their lives.  And all of this because my body didn't do what it was supposed to do.  So, along with the trauma and heartbreak, I experienced guilt, anger and depression/anxiety.  The guilt eats you alive.  My body not doing it's job caused my babies to go through pain.  AND it caused my son to get a devastating disease that in turn, took his life.

 

There are also the good NICU experiences.  The milestones being reached; the LOVE your babies receive from the incredible nurses and doctors, who truly are their parents, when we can't be there; the LOVE we received as parents from those same incredible nurses and doctors as they took care of the most important people in our lives and took care of us.  It's truly a roller coaster ride, and they tell you that from the beginning.  Your babies and you are going to have good minutes and bad minutes, good hours and bad hours, good days and bad days. 

 

My advice to parents new to the NICU: let yourself feel all of those feelings.  Cry. Scream. Fight. Laugh. Be Weak. Be Strong. Stay. Walk Away. Sleep when you can. Take Care Of Yourself. Believe. Let Go Of The Guilt. Love Yourself.  Love Those Babies. NEVER GIVE UP. 

 

It's not something you can be prepared for and it WILL change you.  Take that change and try to make a difference in your own life and the lives of others.  It's important that those that don't know these experiences, walk outside of their comfort zones to be there, in any way possible, for those that are going through it or have been through it.  And it's just as important for those that have gone through the NICU experience to be there for each other. 

 

To those who have experienced the NICU, are experiencing it now, or will experience it one day, I am here.  Please reach out: to cry, to sit in silence, to scream, to ask advice.

 

I hope my writing is helping at least one other person.

Only To Be With You

Thank you to Lisa for finding and sending this song. And for always speaking his name. You know.
I had to write a blogpost because this song is just so right, so perfect, so beautiful.

I have also always said my kids all look like a certain animal. I have side by sides saved in my phone of all five kids with the animal I think they look like. Jace is a lion. The name of this band is Judah & The Lion.

Thank you, Lisa. Again...you know.

For my sweet Jace.

my hands and my heart

As imagined, with three little ones and a teenager at home, life is very busy.  YES, my hands are full (as everyone likes to ask) 💕  But, so is my heart. 

The summer has flown by and Tey went back to school today.  I am NOT the mom who has been looking forward to school starting back up.  I am dreading the stress of homework, grades, and the busy hustle and bustle in the mornings and afternoons.  But, we are there, so I'm trying to get organized! 

Tey will be 16 in just 3 months - OMG!  AND he can get his learners permit on September 13th.  AAAAHHHH!!!!!!!!!!!!!!!!!!!!!!!!  Tey is doing great though.  He had a busy summer playing basketball, riding bikes around, hanging with friends and helping me a lot with the littles.  He has grown so much...  SLOW DOWN.

And that is life.  It just keeps going.  It's been 19 months and 4 days since Jace took his last breath.  I don't think about him any less.  My sadness has not faltered.  I look at Eliana and think about how he should be right there next to her.  Reaching his milestones right along with her.  I think about how she should have him here.  How we all should.

We went to NC for a week to visit my sister and family and we had the BEST time...  I hate leaving.  Being around my sister is like being home for me.  Being around her and her whole family.  It just feels right.

Eliana is doing really great - she is walking now, which is huge!  She does have a little bit of a drag/limp in one of her legs so the doctor is keeping an eye on that.  We'll go back in two months and if it's still there she will be sent to ortho.  She is an amazing talker - far advanced for her age - I like to think that is the "old soul" in her....and also Jace.  My sister (and everyone) always talks about Eliana just having a sparkle in her eyes - there is just something there.  And I agree.  It's strength for all that she's been through and seen and it IS Jace shining through her.  She moved up to the toddler room at her school, and as always, makes everyone laugh:)

Judah is doing great - he is getting so big (I called him our Judah Buddah) and is 7 months old today!  We believe he was colicky in the beginning because truly all he did was cry.  He couldn't be comforted and it was so hard!  But, he has finally turned a corner (a couple months ago) and is such a happy happy boy! 

Kiera is also doing amazing!  She moved up to the 3 year old room at her school and is loving the new toys to play with!  She is SUCH a threenager, with a little attitude.  She tries to be a second mom to Eliana and Judah, which is adorable, and she is such a singer and dancer!  She is also potty-trained which is HUGE!  We are still working on the poopy part but we're pretty much there and can say she is officially potty-trained!

And that's life in a nut shell right now.  Pics of the kiddos are here and some from NC, and as always, I've included Jace, my baby boy in Heaven.

1st Day of 10th Grade!

Getting down!

Dance Eliana, dance Eliana, dance dance!

 

 

Cousins:)

Downward Facing Dog!

They played a MEAN game of Monopoly.  Pretty sure it lasted at least 5 hours!

Our stop at Cracker Barrel on the way to NC

LOVE



LOVE