Hope for Hayden

Darkest of Days

Be merciful to me, O LORD, for I am in distress; my eyes grow weak with sorrow, my soul and my body with grief.

-Psalm 31:9

As Trisomy parents we worry about what tomorrow will bring as tomorrow is never promised. You are grateful for each day God brings and each moment that you are able to spend with your child. We fear not if we will be back in the hospital but when and what will be the outcome of the next visit. With only one week of being back at home we had no idea this would be the outcome and we would be right back in the Pediatric ICU.

One of my worst fears came true as I had to call 911 and my daughter had to be rushed to the Emergency Room at Levine Children's Hospital. Throughout this journey we have had a lot of firsts but my first time calling 911 and riding in an ambulance I did not want to be one of them.  Hayden was having difficulty breathing as she was breathing heavily, had very low oxygen levels, and started to change color even with increased oxygen flow at home. 

Six days later we are still in the Pediatric ICU and Hayden is still fighting the good fight. She is showing us she is small but mighty, fragile but fierce, and that she is a true miracle at almost 5 months of age. We are so incredibly proud of her tenacity and strength and she is teaching Tim and I each day how to be strong and courageous just like her.  We lift our precious daughter up in prayer as we ask him to comfort us in his loving arms and give us strength to overcome. Amen.

Goodbye Hospital, Hello Home Sweet Home

Home with Hayden

Prayer: For blessings here and those in store, we give thanks now and evermore.

We are celebrating a new start to our journey as we are finally home from the hospital!  I could not imagine a more perfect belated Mother's Day present than bringing our precious baby girl home! Although Hayden is home with double the medical equipment, triple the medication, on oxygen, and with nursing assistance, we truly believe Hayden will continue to flourish.

Thank you to all of those who visited us, sent food or well wishes while in the hospital, and those that have prayed for us each day throughout this journey. We are so grateful to have you in our lives and witness the power of prayer. 

A special thank you to all of the courageous nurses and doctors in the PICU and Progressive Care that fought for our daughter Hayden. We truly will never be able to thank you enough and are thankful to have met you, known you, and grateful that God placed you in our path. You always say we hope not to see you again but you will forever be in our thoughts and prayers.

We know that we will be faced with new struggles and although it is overwhelming we hope to get Hayden settled in soon. We  are just beyond happy to say Hayden is finally home sweet home but we are anxious to put those 47 days in the hospital behind us and looking forward to brighter days ahead.   Hayden's journey does not stop here as this is just the beginning, a new chapter, and hopefully the start of her miracle that we all are fortunate enough just to witness.  

Hope for Hayden-Trisomy Strong, Small but Mighty, Fragile but Fierce

Happy Mother's Day

Hope for Hayden

For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.

-Jeremiah 29:11

These last few days I have struggled with writing another blog entry as each and everyday I have tried to write something  but failed. We have been told over and over by family members and visitors that coming to visit us they get a glimpse of what we endure each day but nobody will ever truly understand how hard these past 45 days have been for Hayden, Tim and I.  These past 6 weeks have been the hardest days of our lives filled with discouragement, despair,  anxiety, pain, anger, and loneliness. It has been a true struggle trying to find a balance of writing about our experience and being hopeful but also being honest. We believe that everyday is a blessing, we are thankful for the Good Lord's mercy and healing hand, and know that he will never give us more than we can handle, but some days we can't help but ask how much Lord do you think we can handle?  How much do we have to endure? Are we strong enough?


It has been 9 months since our world was rocked and we found out that not only were we having a daughter but that she also was diagnosed with Trisomy 13. We continue to strive and learn a little more each and every day about not only Hayden but Trisomy 13.  Many of the congenital malformations or birth defects associated with Trisomy 13 we have discovered Hayden does have as she has spent 2 months of her life so far in the hospital. But she continues to defy the odds at 4 months of age with approximately 80% of children diagnosed with Trisomy 13 pass away within their first month of life.  Hayden's courageous story has already touched so many lives and she continues to raise awareness for Trisomy 13 and show Tim and I how to believe and fight for each breath we are given.   

So as we celebrate Mother's Day, I cannot help but think about all of the fellow Mom's with children in the hospital. Being a Mom is the hardest job on Earth but being a Mom with a child in the hospital, a special needs child, or a child with Trisomy, you have no idea the depth of your strength, tenacity, and resourcefulness.   You see things you never could imagine. You treasure things most wouldn't think twice about. You don't think a milestone is just a milestone, it is a miracle. You become a nurse, an advocate, an educator, a specialist, a therapist, and most of all a Mom to your wonderful miracle and child fighting for their life.

I will be honest it is very difficult to write this and know that I will be celebrating my first Mother's Day with my daughter in the hospital. You think of Mother's Day as a day to celebrate, a day filled with joy and brunch plans.  So although it is not how I envisioned, I want to celebrate all the amazing Moms out there.  Thank you to my amazing Mother for her selflessness, strength, support, and love. It is because of you and Dad that I understand what love truly means. Thank you to all the other Moms who have banded together to show Hayden, Tim, and I what it truly means to be a Mother, Grandmother and Mother-in-Law. And thank you Hayden for showing me how to fight, how to be your advocate, and most importantly letting me experience for the first time what it means to be a Mom.  Happy Mother's Day to all the Moms and we love you more than you ever will know!