Exodus 15:13 says…
You in Your mercy have lead forth the people whom You have redeemed; You have guided them in Your strength to Your holy habitation.
I’m comforted by this scripture as we continue on our journey with Zion because I know that the Lord is who is leading and guiding us every step of the way.
All of the prayers of protection against various illnesses and for healing that I requested in my last blog have been answered in that Zion is relatively healthy as I write this to you all. So thank you as always for your faithfulness.
Since my last post, Cincinnati Children’s has officially said no to further heart surgery for Zion. This is what I was expecting based on conversations I had with the cardiologists. George and I finally spoke to Dr. Hammel with Omaha Children’s on the phone early last week. He sounded like a quiet and reserved man, but clearly displayed a confidence in repairing the Trisomy 18 heart. This is the sort of confidence a parent wants to hear before potentially putting their baby through an open heart surgery.
He spent some time fielding our questions and explaining roughly what he might look to do for Zion. Every concern I had for Zion undergoing an open heart surgery was removed by his answers. He definitely has a plan for every possible scenario that could present itself during the surgery. He also spent a little time teaching us about the Trisomy 18 heart.
He explained that the heart is sort of on a continuum and is always evolving and changing as the child grows. He explained how rapidly heart disease progresses in many of these babies, and this has been evidenced by the fact that Zion now has stenosis (hardening) in his pulmonary artery – aka pulmonary arterial hypertension, which seems to be a more recent development. He actually said that Zion is an “older baby” to undergo heart surgery in the Trisomy world! Wow, I never would have guessed that 3 months of age was “old” for heart surgery. But clearly this man has a completely different perspective on treating the Trisomy heart compared to most cardiologists.
We also learned that arteries leading into Zion’s heart were “twisted” according to Hammel. And he even told us that sometimes he is able to gird up a floppy airway (which Zion has) if it is low enough in the trachea. I liked how he said that he would take a fresh-minded approach to ventilation for Zion after surgery. Usually he tries to begin weaning babies off the vent at about a week post op. But obviously every baby will respond differently to a heart that now functions differently. It would be an incredible blessing for Zion to come off of the vent one day, but we will support our son 100% if he remains ventilator-dependent his entire life.
Based on that phone call, George and I were ready to officially say “YES” to Omaha. So since that day, we have been patiently waiting on Omaha to gather the necessary medical records for Zion, and also to gain the approval from our insurance company to pay for the surgery. This process has involved Cincinnati Children’s stating in a letter the fact that they will not do surgery and why, combined with Omaha expressing that they will do surgery and why. And then the medical director with our insurance needs to make the approval or denial. So we have been waiting on the Lord and praying. We were hoping to have an answer by now, but nothing yet. Please pray that God will give us patience as we wait, because my husband has been using his vacation days to prepare for me to have to depart quickly to the hospital if/when we get the call. We will let everyone know once we have an official answer.
PRAISES AND MILESTONES:
Zion officially met his sister and brother for the first time last week! It was a special time indeed. Zion’s eyes got SO wide when he heard their voices. I truly believe he remembered them from the womb! He stayed calm and didn’t get upset or agitated by these two high energy youngsters fiddling with him – he fit right in with his siblings.
We had to teach our 2 year old how to rub his brother’s head gently. He figured it out after a couple tries.
And our 4 year old daughter was completely in love at first sight as you can see written all over her face! It was really touching for me to see her in total awe of her brother seeing him for the first time in the flesh (since up to that point she’s only seen him on a cell phone screen). This moment definitely gave me a greater urgency to get our son home with his family.
The icing on the cake was snapping the very first photo of all five of us! Thank You Lord Jesus Christ for this moment. What a blessing.
We also nominated Zion to become a TinySuperhero. This is a wonderful organization that gives adorable custom capes to babies and children facing serious medical conditions or illnesses. Shortly after I made the Facebook post requesting donations, within a couple hours Zion’s cape was fully funded! Check him out! As you can see, he LOVES it!
We raised enough money to also get capes for 9 other babies/children who didn’t get enough sponsors for a cape. I never cease to be amazed at the generosity of the “village” we are surrounded with – both near and far. THANK YOU to those who donated!
We continue to receive help and blessings. God truly has shown us how deep and wide His love is for us. A friend of a friend recently sent our daughter some beautiful dresses in the mail – what a surprise! Look at her twirling in them!
Another friend came by to install some much needed ceiling fans on our main floor. A dear sister from my church group came by to deliver some beautiful flowers she handpicked for Zion from 21 Petals Farm. And we also got a sweet and generous care package from our friends in Greece! We are so grateful to not have to go about this alone.
Lastly, Zion got to meet his Papou for the first time! And he got some very good snuggles from Yiayia.
Zion overall continues to do well at about 3 1/2 months old. I think back to how I prayed and asked God just to let me see him alive after birth, even if it was short lived. So God has by far exceeded my request in giving us all this time with our son.
He is approaching 11 pounds in weight, has begun to grasp objects, and is continuing to melt hearts in the NICU with the little smiles he flashes. The team has also begun testing him by lowering his ventilation settings just a bit to where he isn’t getting as much pressure support in order for him to practice generating it on his own. Please pray that Zion tolerates this change.
We will be back in touch when we have our official decision from Omaha. Team Zion loves you all!