Sunday, May 1, 2011

May Feature Family

At the beginning of each month we will have a NICU family tell their story about life in the NICU with their baby. Our hope is that by featuring different families others will have a better understanding of the difficult, roller-coaster ride many face when their baby is in the NICU.

For this month's feature family, I thought this family would be perfect to share their NICU story, especially today as we would be seeing them at the March of Dimes Walk.  The Case family was the 2010 March of Dimes Ambassadors and have been big supporters of the March of Dimes over the last three years.  They also shared their story on CaringBridge back in October 2009 and Heidi is on the Children's St. Paul STEPs NICU Parent Committee.  We are so lucky to have the Case family as supporters and friends of Ella's Halo. 

Ellery Case
Written by Heidi Case
Former NICU Mommy

Two and a half years ago my daughter, Ellery was only given a 5% chance to survive. Her story begins when I was 30 weeks pregnant; doctors discovered my unborn daughter was critically ill with a rare and life-threatening condition called Fetal Hydrops. The mortality rate of Hydrops is up to 98%, as it's a condition where fluid overtakes a baby's body. Ellery's heart and lungs were surrounded by fluid, which prevented her lungs from fully developing. For three weeks we watched our baby continue to worsen through ultrasound, and our medical team finally said enough was enough when the fluid spread to Ellery's abdomen. At 33 weeks gestation, my very sick baby was born seven weeks early; she came out blue, limp and not a whimper of a cry as fluid surrounded her heart and lungs which made it impossible for her little lungs to inflate.

Neonatology staff at Children's worked on my daughter, and finally stabilized her after the longest 25 minutes of our lives. She then began her 28 day NICU stay. Within my daughter's first 24 hours, she developed a deadly lung condition called pulmonary hypertension, high blood pressure in the lungs. This condition doesn't allow the heart to push oxygen to the body. Ellery was put on nitric oxide to treat this condition, but my husband and I were told to expect the worst. We were called in multiple times in her first two days and told she had no reserves left, and she could leave us at any moment. I can't put into words what it's like watching your baby fight for her life - you really just go through the motions and go into survival mode for your child...and for yourself.

Ellery endured so many medical issues: congenital chylothorax, pulmonary hypertension, multiple pneumothorax, severe reflux (GERD), and jaundice. She required multiple blood transfusions, fresh frozen plasma, multiple chest tubes and sometimes hourly pokes for blood gas draws. It's exhausting just thinking about it and typing it now, I don't know how I lived it - it seems surreal now.

The "mommy guilt" of leaving one child to be with another was horrible. Leaving our then almost two year old son to be with Ellery made me cry and wishing God could put me in two places at once. I'll never forget leaving for the hospital one afternoon only to have my mom call me saying Wyatt was crying for me. It's one of the worst feelings in the world when both your babies need you.

The journey was long and painful, it took a toll on our marriage, our family, our son and our parents. The NICU stay was grueling, as we stayed with Ellery almost every night - fearing that would be the night something terrible would happen. Looking back, we were so incredibly fortunate to have a private NICU room where we were able to stay with our baby. And the staff was top notch, especially the doctor studying to be a neonatologist, Dr. Christina who followed Ellery; she holds a very special place in my heart! We're were so lucky to have such advanced medical staff caring for our child.

Today, Ellery has developmental delays; she not walking yet (but VERY close) and she has a speech delay. But she is a happy, healthy, beautiful two and a half year old stubborn little girl!! She loves to color, wear jewelry and steal her brother's Matchbox cars! She will start pre-school this fall and continues to do well in therapy.

We have Children's Hospital of St. Paul Staff and the March of Dimes to thank for Ellery's love of Barbies today, as it was their amazing work, and the March of Dimes' funding that made the research and development possible for nitric oxide! Without that therapy, my little girl would not be here. The March of Dimes has funded many other instrumental life-saving therapies that save thousands of preemies and sick babies every day! Their work is amazing, powerful and helps families be just that - a family. 
Through the last two and a half years we've shared Ellery's story countless times and tried to put our difficult times to good. One way we give back is walking in the March of Dimes' March for Babies walk. We walk as team Ellery's Entourage in honor of Ellery, but also in honor and memory of all little ones born too soon or too sick. Thank you for following Ella's Halo's blog and for supporting their mission. We're also proud to support Ella's Halo and firmly believe in their mission and cause! We're proud to know Taryn and Ryan, and see the amazing work they do for others.

Thank you for allowing me to share Ellery's story - I hope her story brings you hope and inspiration that miracles can happen! If you're a family in the NICU now, may God bless you and see you through this time.
~Heidi Case - Wyatt and Ellery's mom


Tracy Krumwiede said...

Beautifully written Heidi! We are so lucky to having amazing NICU families and supporters like the Case's! :)

Post a Comment