Hello Everyone!
As we enter into this season of gratitude, I’ve taken time to reflect on this past year. It was a year ago this week that we found out we were expecting Lucy. After an exhausting year of stomach issues, seeing that positive pregnancy test filled my heart with a deep joy. Tears filled our eyed in what now feels like a foreshadowing of the tears that would come nine months later when we welcomed Lucy into the world and learned of her diagnosis. No one could have prepared Josh and I for the shock, emotions, and overwhelming love we would feel in those first few hours. We felt that love for each of our babies, but with Lucy there was a fierce determination. We knew she needed us in a different way. She would also need the help of our family, friends, and greater community. We felt that same determination, love, and willingness from all of you. We needed you, and you rose to meet us on this journey. I truly felt that God allowed us to see his deep and abiding love for Lucy and our family through each of you. Words cannot adequately express our gratitude, but I hope you know how deeply we feel it.
That being said, here is a quick update on our girl. Lucy is still on oxygen support, but we are able to take her off at home, during the day, when she is wearing a pulse ox. She is exclusively nursing and gaining weight! The Gtube is still in place, and we will reevaluate keeping it in when we consult with her surgeon at her next appointment in December.
Lucy began Early Intervention therapy and we love her occupational therapist! We are working on strengthening her neck muscles, tracking with objects, holding rings, and keeping her head at midline. She also connected us with a family whose four year old daughter has Down syndrome and they live just a few blocks away. We are very excited for new friends!
We met with an ENT (ear, nose, throat) doctor to talk about Lucy’s temporary hearing loss. This was her third time to 'fail' a portion of the extensive test. She is unable to hear a certain range of pitch and sound, but it does not affect her ability to hear our voices. We will go again in December to see if there is any improvement. The ENT likes to wait until babies are 5-6 months old before assessing the need for tubes or surgery. This gives her ears time to grow and developed which might be the cause of hearing loss (tiny ear canals).
We also met with Dr. Hickey from the Sei Center (Center for Down syndrome) at Children’s Hospital. He is an expert in the field and has been working with patients with Down syndrome for 30 years. The Sei Center will be a guide in all things Down syndrome when it comes to Lucy’s medical and developmental needs. We are grateful to have this incredible resource at the same hospital we travel to for all of Lucy’s other appointments. It’s been really convenient to have all her doctors in one location, and it’s well worth the drive for the expertise and care we’ve received. Dr. Hickey said he doesn’t normally see such a quick success in both breastfeeding and weight gain given her surgery and low muscle tone with Down syndrome. He was impressed, and we were grateful!
Our biggest prayer request is for Lucy’s hearing. We pray that as her ears continue to grow and develop, that she would be able to hear all ranges of sound and pitch. We also invite you to pray for those families that are still in the NICU throughout this holiday season. There are many families who’ve been there for months, and would love nothing more than to bring their baby home for the holidays.
As we gather around the table on Thanksgiving, know that we give thanks for each of you. We love you and continue to pray for you and your intentions.
With love and deep gratitude,
Lisa & Josh
