Sweet sleepy baby
February 25, 2014. It was the day we were told of Everly's diagnosis. A day we will never forget. A day we were told that sooner rather than later we would lose the daughter we had grown to love the past nine months. The doctors tried to gently prepare us for this imminent death they were expecting. We wanted to take her home so she could be surrounded by the sounds of our household...noisy boys, barking dog, mom and dad's voices...rather than the incessant beeps in the NICU room. We signed on with hospice, in shock that there even was such a thing for babies. We briefly spoke of wishes for "after" and answered questions about our plans. We were being prepped for the probability of death.
But what we were never prepared for when we left the hospital was the possibility of living. No discussions were focused on the how to live with a medically fragile baby. No advice on how to handle the nuances of multiple machines and tanks. No tips on what to expect for development as she aged. No guidance was given for how to navigate this unchartered territory. What could we do and what couldn't we do. The hope of Everly being able to defy the odds was certainly our prayer but most certainly not in the minds of most of the medical community.
So, here we are 102 days later and our baby girl is thriving and so is our family. Every member of the family, including our furbaby, make tracks to see sweet pea the minute I wake her up. They seek her out even before the bathroom. Really. She is so incredibly loved by not only our family but our friends, extended family and by so many who haven't even met her but have just heard her story. We are so encouraged by the messages of hope and faith we receive. She may be little but she's making such a difference all around her! How proud we are of this tiny miracle!
We are asked quite a bit "How is Everly doing?" and I post frequently on Facebook pictures of her happy and enjoying herself. I, thankfully, am able to answer that she's doing "well." And thankful we are. But we do not have our heads in the sand and we know that in a split second it could change. Even the "well" is relative to her condition and her specific physical ailments. I make this point so that we can avoid any confusion that her "well" doesn't change her diagnosis. Her therapy will not completely change her clenched hands or that she will be able to ditch the obnoxious NG tube and fully feed via a bottle. Hopefully, it will help, will lesson the tightness in her joint contractures in her hands but won't remove that characteristic of a Trisomy 18 baby. The feed therapy will help hopefully with non-nutritive sucking if successful and possibly any oral aversions when baby food can be introduced assuming she can swallow it. Her "well" means that her pulmonary hypertension is still being offset by the massive VSD (Ventricular Septal Defect=hole) in her heart; either of which without the other would have devastating effects on her body. As she ages, that balance is expected to change. Her "well" means that her numerous daily choking spells haven't increased and are being managed by her own alertness, strong gag reflex and oxygen "blow-bys" we give her. Her "well" means that her desats at night aren't resulting in her turning dusky or needing to be bagged again. Her "well" can be read in so many ways but for her and for us, it means that we are still able to enjoy the privilege of being her parents.
It really is a confusing dynamic...the probability of dying and the possibility of living. We want to put the first thought out of our minds when things are smooth and seemingly okay with her. However, the reality is that we must be prepared (can you be??) because her body is just not working the way a body needs to and at some point it will be too much. Maybe not this month, maybe not this year and maybe not in five years, but eventually. While that is true for all of us, we know that she will be called home sooner than should be expected for a child. But, again, in the meantime we are trying to live day to day with what we have at the moment. We are now thinking further out than we did before. We are now trying to make some plans the near future. We are doing what we can to have a normal (is this even possible?) life with our three children.
SOFT (Support Organization For Trisomy 18) just updated their book entitled "Care of the Infant and Child with Trisomy 18 and Trisomy 13" for 2014. It contains valuable information for parents of children with these conditions and is a great go-to source for us. As I read it a few days ago, I was struck by a few statistics. As one can surmise, I've done my fair share of reading on this subject over the past three months as most Trisomy parents do. However, a new piece of information was given that was new to me. Before I give that info, let me recap some numbers and facts regarding Trisomy 18 babies taken from the SOFT website. Feel free to visit trisomy.org for more information or the Trisomy Foundation. Trisomy 18 is a chromosomal disorder that occurs in 1 out of every 7,000 live births. Previously that number was 1 out of every 6,000 but more families are choosing to terminate upon hearing the diagnosis. With this diagnosis, babies are more likely to have a number of other birth defects and a shorter life span as well as profound physical and mental delays.Testing can be done in high risk pregnancies by using the Maternity 21 or Harmony screen which looks for the three Trisomy conditions (13, 18 & 21). I did take this test at 10 weeks and it was found to be negative. Ongoing treatment, support and care for babies with T18 is lifelong. 50% of babies with T18 will not survive to birth. Out of those that do, most pass between hours and a week after birth.Only 5-8% of babies with T18 will live to see their first birthday.90% of babies with T18 are born with Full Trisomy which means the extra chromosome is present on all the cells in their body. Those with partial or mosaic only have the extra chromosomes on some cells; therefore the prognosis varies (better typically) for them and their lifespan. Everly has Full Trisomy 18.The one number that was most shocking to me and was also new information is that there are only around 200 babies who are currently living past their first birthday in the United States currently. Wow! That just took my breath away. I know that Trisomy 18 is rare but certainly expected the number to be so much higher than that. I will continue to be thankful for each day we are blessed with and be joyful for that time.
As we are approaching 3 1/2 months with Everly, we are trying to see ahead as we walk the path of her living and not dying. There are no guarantees. There are no promises of tomorrow. For any of us. We only know that she is with us today and while we don't know what the future holds, we do know that living like she's dying isn't helpful to anyone, especially her. We will continue to plan for the future. Continue to look forward and upward for only God knows the plans He has for her. We are only her earthly parents and will do everything we can to give her the very best life possible, regardless of how abbreviated her stay.
"Trust in him at all times, you people; pour out your hearts to him, for God is our refuge." Psalm 62:8
Don't forget to check out her Facebook page for frequent quick updates and pictures at Love For Everly!
With love and appreciation,
Crystal
I'm almost 5 months pregnant now and I've just been told that my baby tested positive for trisomy 18, although my heart is broken because I was given the option to terminate if its found that he really had it,your story gives me hope.I will not terminate either way,I've heard his heart beat and I feel his kicks,I love him beyond all measures ..THANKS FOR SHARING YOUR STORY,YOU GUYS WILL BE ADDED TO MY PRAYERS
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