Is Christmas really just three days away? It has really come up quickly on me and is a time of year often full of emotions, ranging from joy and excitement to stress and anxiety. Whether you are fortunate enough to see the wonders of the season through the eyes of a young child or to be able to participate in making the season a little bit brighter for someone who might not otherwise have a Merry Christmas, it is a time that evokes images of family gathered around a dining table or sharing hot chocolate in front of a roaring fire. Closeness, togetherness, connectedness, and love. Our experiences past and present shape our expectations and our hopes for the holidays.
Since the very early birth of our triplet daughters in December of 2006, and Zoe’s untimely death in 2008, my perspective about the holidays has shifted. I am much more aware of those around me who are facing various life challenges or illnesses. I see the need for hope and the need for faith when smiling in December takes effort you never thought you would have to exert. You may be facing another holiday, birthday, anniversary, or milestone without someone you love dearly; it is a reminder that they are no longer with you in the present, a new year starts which draws you further from the time you last held them in your arms or kissed them softly on the brow. We cannot deny that under all the Christmas cheer there is real heartache and real suffering among us. But, I do believe that hope can be found, joy can be felt. Sometimes all we need is one person to let us know they care...one person to say "you will get through this"...one person to let them know we've been there too and they are not alone.
My heart and thoughts go out to the families who have to spend the holidays in the Neonatal Intensive Care Unit with their critically ill baby. I know how difficult it is to feel joyful when your tiny one pound baby is in a fight for their life. It can be difficult to excitedly anticipate what the New Year may hold because you fear hoping for the best…afraid of believing you will one day walk out of that hospital with your healthy baby in your arms…as if it might “jinx” the reality.
I remember vividly sitting in a NICU mom’s luncheon sometime between Christmas and New Year’s Eve. My three daughters were about a week old, each weighing under 2 pounds, all on oscillators, fighting blood pressure issues, open PDAs, and infections. I sat quietly with my throat closed tight as I listened to a mom describe her plans of sitting in a rocking chair in the hospital holding her baby as the clock struck midnight, ushering in 2007. I had no idea if my daughters were going to live through that very day and hopes of holding them were hopes I dared not even consider at that point.
When your child is critically ill, gifts just do not seem important anymore because the only thing you truly want is for your child to live. It is a time of year that is all about togetherness and yet, as you sit next to an isolette which holds your premature baby, you can feel very alone. This is difficult, not just for the parents, but for their family and friends as well who may desperately want to help in some way, but simply don’t know how. Or maybe you have recently lost a baby, this might be the first holiday season since your loss. Joy can seem intangible and again, family and friends grapple with what to do.
As you read the story and anecdotes in this newsletter, from our contributing preemie parents and bereaved parents, I hope that current NICU families will truly know that they are not alone, that others have come before them and survived. That friends and family members of these parents, would gain a deeper understanding of what it means to have a baby in the NICU and how best to support them. And if you happen to be one of the very fortunate people who have not been personally touched by a premature birth, maybe you will have a greater awareness of this epidemic and be prepared should you find yourself or a loved one facing one of the most traumatic life experiences.
This year I pray for peace…a sense of peace that settles in your heart, resides in your soul and surpasses all understanding.
A poem adapted from the popular, 'Twas the Night Before Christmas, by a preemie dad for his triplets, Benjamin, Casey, & Danielle, and in memory of Emily. This poem was given to my husband when our girls were born, just before Christmas. I think it will resonate with many of our preemie parents.
Thanks to www.PreemieCare.org for sharing this poem:
Jolly Old Saint Nicu
'Twas the night before Christmas,
and in each isolette Little creatures were squirming and getting all set; Machinery sat by their bedsides with care,
In hopes that good breathing skills soon would be there.
Day shifters were home all snug in their beds,
As visions of overtime danced in their heads;
While preemies on ventilators, and some on CPAP,
Had just settled down for a long winter's nap...
When out in the hall there arose such a clatter,
The residents woke up to see what was the matter.
Away from the sink I flew like a jet
To make sure all was well at my baby's isolette.
Some bilirubin lights with their powerful glow
Gave the lustre of mid-day to babies below,
When, there before my wondering eyes, it would seem,
Was an oversized stroller and a medical team.
With a handful of needles with which they could stick you,
I knew in a moment it must be St. Nicu.
More rapid than eagles his specialists came,
And he whistled, and shouted, and called them by name:
"Now, Nurses! Now, Residents! Now, Neonatologists!
On, Social Workers! On, Respiratory and Occupational Therapists!
From the front of the unit! To the end of the hall!
Now dash away! Dash away! Dash away all!"
Up to each baby's cribside they flew,
With the stroller full of toys, and St. Nicu too.
And then, in a twinkling, they stopped at each bed
And tucked in the babies and got them all fed.
As I looked at my baby, and was turning around,
Down our aisle St. Nicu came with a bound.
He was dressed in red scrubs, and I could instantly tell
That his clothes had an obvious hospital smell;
A bag of stuffed animals was flung on his back,
And he looked like a peddler just opening his pack.
A little red pen he held tight in his teeth,
And a stethoscope encircled his neck like a wreath.
He was chubby and plump, with a few extra pounds,
And I laughed when I saw him there doing his rounds.
A turn of his clipboard and a twist of his head
Soon gave me to know I had nothing to dread;
He spoke few words, but came straight to my side,
And running down his face was a tear he had cried.
And laying his hand on the back of my head,
He gave me a nod, and slowly he said:
"Each night you come here you're aware of the danger,
But your baby is loved by the One in the manger."
Then the medical team gave a thumbs-up and smiled
And St. Nicu placed an animal next to my child.
But I heard him exclaim, as they rolled out of sight,
"Merry Christmas, tiny baby, and have a wonderful night!"
Charisse, mom of Sweetie (seen above) born at 30 weeks, shares her story of her NICU holiday
My son, Sweetie was born on 11/24/2009, Thanksgiving Day. He wasn't due until 01/29/2010. I didn't have warning signs or previous medical conditions. I didn't smoke, I don't do drugs or drink. I was a healthy, full-time employed, married, mother of 3 other children. The day he was born I felt off, a little crampy and just not "right". By the time we arrived at the hospital I was dilated 10cm and there was no going back!
Within 5 minutes there were at least 15 people in my room; doctors, nurses and an entire NICU Staff. He was born in what seemed like a blink! The entire time I remember just crying with my eyes closed, begging for them to stop my delivery..refusing to push. (To no avail of course.) He was born in silence. No cries or sounds coming from him and no claps or words of congratulations and no opportunity for me to see or hold him. He was immediately whisked of to the NICU. Sweetie was born with several complications. He was unable to breath on his own, regulate his body temperature, his kidneys weren't functioning, he was on a feeding tube, in pain and had a IV line that was attached to his belly button to avoid poking him over and over again. Today, 24 months later, we still don't know 'WHY' he came early and I imagine we never will.
My first days of the NICU were like being in a foreign country, alone, where you don't speak the language. It was Thanksgiving Day when I saw my son for the first time hooked up to so many machines and wires and IV's, all of which weighed more then he did. He couldn't breath on his own or feed or regulate his temperature, things we just assume every baby can do...right? I knew it was Thanksgiving Day I knew I had other kids and a husband and reasons to be thankful but, I just couldn't wrap my head around what was going on at that very moment. I didn't want to eat or sleep or leave the NICU. I didn't want to celebrate or see anyone or talk to anyone. I didn't leave Sweetie's isolette for 3 days.
After I was discharged, we did a lot of going back and forth between the hospital and home, which thankfully were close to one and other. My husband had to return to work and we had Sweetie's three siblings at home, a 17 year old, 12 year old and a 13 month old. All of whom needed my attention. I was on auto-pilot from that moment on. I did what needed to be done on a daily basis and then went to the hospital every night when my husband got home from work. When I wasn't at the hospital I was calling the hospital to check in on my son. Everyday I pumped breast milk for Sweetie, froze it, and drove it to the hospital like it was liquid gold.
Christmas rolled around and the days seemed to get longer and I honestly don't remember eating or sleeping during much of that time. I forced myself to put up Christmas decorations, did a little on-line shopping and forged my way through it. Some days were better then others. Some days I could hold onto hope and the future and find joy in my family. But, most days I was emotionally unavailable. We spent Christmas Eve with family and for a short time I escaped into the moment. But, I excused myself early to go visit Sweetie.
I decorated his bedspace with a mini Christmas Tree on top of the isolette, a tiny Santa hat and some of my favorite scriptures taped along the outside of his isolette. Christmas Day of this year was not like past Christmases at home. I did all the things I usually did, cooked for my family, watched my kids play with my husband, but all I could think of was getting back to the hospital.
When I was able to get there that evening, Sweetie's night nurse, Tina (who I remain close to till this day) had managed to get the hat on him and take a picture for me. She also gave him a stuffed bear that had a matching wristband on it just like Sweetie's. Nurse Tina was the nurse I'd request every night if she was on duty. We connected and she was the one who pushed me to go home and to eat and to go get a cup of coffee. Nurse Tina was the one that put Sweetie in my arms 21 days after he was born. It was the 1st time I ever got to hold him and a memory that will always remain fresh in my mind.
She made me feel safe and gave me that feeling I needed to be able to walk out of the NICU and take care of the other people that needed me. And on this particular Christmas Night, she brought joy and comfort. She understood how hard it was to spend this holiday in the hospital and she did what she could to help me create memories of Sweetie's 1st Christmas, that I will treasure forever.
Sweetie is now 24 months old and my days are full with the many specialists and therapists that still follow him. I still have many sleepless nights due to the chronic medical conditions we face, but, the joy of watching Sweetie play with his 3 year old sister Kobe is all worth it.
To any new preemie parent reading this....hold on it does get better. Your sleepless nights get less, your worries begin to shrink, your tears lessen and your smiles increase. I will never forget where my journey began and where it now has taken me and I can't wait to see what the next chapter holds.
*Charisse has also graciously shared additional details about her struggle with depression and Post Traumatic Stress Disorder. We'll have it up on our website soon.
Sweetie today!
You Don't Know Jack: A Micro-Preemie Story is a book about the birth of a 23-week micro-preemie, Jack, and how his family faced the uncertain future with faith and hope. The story is told through the father's perspective as he brings the reader into those tumultuous family times with openness and honesty. This book contains equal parts memoir, parenting experiences, and spiritual journey. The first three chapters can be read on a blog that has been set up to promote the publication of the book: www.youdontknowjackbook.com.
