Another day is here and we find ourselves waking to see the amount of support that has poured in since yesterday when we broke the news and launched the GoFundMe page. Wow! We can't thank you enough. Both Rebecca and I were up in the middle of the night, unable to sleep, wrestling with what this all means. Sharing our fears, helping each other to stay positive, praying for strength to get through this in a spirit of love, patience and hope. Today we may find out if baby Peace is a candidate for a very specialized in utero heart surgery that would have to be performed at Children's hospital in Boston. This surgery could restore some function of the left side of the heart. There would still be more surgeries after birth, but maybe not as many and as involved. Today we pray for clarity regarding this decision if it is a possibility and that our insurance would cover it. Also, please pray for Rebecca and I as we discern whether moving the family to Denver to stay close together or if the kids and I stay put in Crested Butte. Thank you again for all your notes of encouragement, prayers and donations. You are carrying us through this moment of suffering.
To all our friends, family and supporters,
We are expecting our 5th child due June 10th, 2015. Rebecca's belly continues to grow bigger and bigger and our anticipation grows to meet this newest member of the family. Rebecca has been carrying the child with great vigilance and care through our winter here in Crested Butte, CO. All of her prenatal check ups have been perfect and the life within her has been growing as usual or so we thought…
This all changed last week when we went in for an ultrasound. What the doctors encountered shocked us and will forever change the course of the life of this baby. It will also force our family to make some big changes for the time being as we live 4.5 hours from Children's Hospital in Aurora, CO where the baby must be born.
Our baby has been diagnosed with a rare heart defect called Hypoplastic Left Heart Syndrome (HLHS). HLHS is one of the most complex cardiac defects seen in newborn babies and remains the most challenging to manage of all heart defects. It presents itself in about 1 in every 6,000 births.
We were told our baby will not survive after birth unless a series of 3 major heart surgeries are performed at Children's. Open heart surgery on a tiny new born requires the most skilled of surgeons and specialized hospitals that can handle these rare cases. In Colorado, we are blessed with one of the top 10 hospitals in the country that have facilities and surgeons on staff to perform these amazing surgeries. The first surgery will be performed usually 3-4 days after birth. The baby will be in the NICU for many days and possibly months if complications arise. The second surgery will be around 3 months old and the fourth surgery around 3 years old.
As you can imagine, our hearts sank when we heard the news. Tears welled up and a lot of emotions quickly overwhelmed us. Had Rebecca done something that brought this about? What kind of life will our baby have? Why? Why? Why? Upon a little research we found that the majority of congenital heart defects have no known cause, so that was a bit of relief. It at least lifts any burden of self blame. These things happen when you're dealing with life. Everything is so delicate and must happen at the right time. Once in a while something goes wrong.
There is good reason to have hope for our baby. Although many die, most live. Developmental studies on those that live show they have normal or near-normal IQ's and lead a good quality of life. The chances of dying from the second two operations are much less than the first, so if our baby can make it through the first procedure it will have a very good chance of doing well.
Upon hearing the bad news the temptation is to ask God to take this away. There is even some anger and frustration that come to the surface. Why us? What are we to learn through this experience? There's no doubt this will be a test of our love and commitment to our marriage and family life. It will take a lot of prayer and support to pull through this in a way that strengthens us and does not destroys us. It will be only with God's grace that we move forward and tackle each step of the way. Also, in the moment, things seem so big, so major and at times insurmountable. We have to remind ourselves that there are many others out there dealing with worse issues, terrible tragedies and the loss of loved ones. That helps keep things in their proper perspective. We have hope that our baby will get through this and life will go on and get back to some sort of normalcy. That is a great blessing!
That's the news we're up against! This will surely put a stress on the family as we try to figure out the logistics of living 4.5 hrs from the hospital and the need for Rebecca to relocate close to the hospital for regular monitoring, the eventual birth, and subsequent surgeries. That leaves the rest of the family in limbo. We're discerning if we're all going to move close to the hospital or if we stay put here in Crested Butte. Not knowing how long baby will be in the hospital and the need to be closely followed leaves us in a bit of a quandary. Also, supporting the family finically becomes a greater challenge as Sharbel will be largely single parenting.
As most of us have experienced some hardship or have been very close to someone who has, the most common phrase uttered upon hearing bad news is,"please let us know how we can help or let me know if there is anything that I can do." Most of the time that offering and willingness to help goes unused and sometimes those in need feel awkward asking for help.
We also know how good it feels when we have been asked to help or we've done an act of kindness for someone in need. That said, here's a few ways you can help.
A GoFundMe crowd funding account has been set-up to help with travel expenses back and forth, housing expenses for our time in Denver, miscellaneous medical expenses not covered by insurance and a little cushion to tap into to help us get through this challenging time and it's unforeseen expenses.
Other than financial help, there will be times for those living close by who can help with the kids or bring over a meal. These offerings are great relievers of stress. Also, if you think of any creative ways to help those will be welcomed.
We'll be asking someone to be the point person to help organize meals and help arrange some kid shuffling when that time comes. In the meantime, please say many prayers for our baby and our family. If you feel so inclined to help to support us financially, we would be greatly blessed either way.
May God bless you and be a comfort to you in your challenges as well.
With all our Iove,
Baby Peace (baby's name while in utero)