Sabrina and I drove to Oregon last Wednesday. We spent our days hanging out at the hospital with Zachary! The caseworker was able to get us into the Ronald McDonald house to stay as long as we needed. too. Turns out our very dear friends in Hillsboro said we were able to stay in their guest house as long we we needed! Even though the Ronald McDonald house was right there by the hospital, we felt like staying in Hillsboro was the right thing to do. That would free up our spot for someone else to stay there that didn't have any place else to go. We had options. We were so blessed to have others offer their homes and even their car for Sabrina to use after I came home!
Zachary arrived in Portland after being flown in from Boise, on Tuesday. On Wednesday, they were able to remove his breathing tube and he has continued to tolerate room air without any problems. They use a medication to keep the valve open in his heart that normally closes after birth. That's what is currently keeping him alive. If that valve were to close, he would lose the ability to have blood flow to his lower extremities. He arrived with an infection in his umbilical cord that has responded well with antibiotics and is no longer an issue.
The genetic specialist came to see us shortly after we arrived. They would be doing lots of testing to see what they could find., The Cardiologist Surgeon came and discussed the plan for surgery. It was very enlightening but also very humbling to know that baby Zachary's life, rested in this man's hands.
Once they had removed his breathing tube, we were able to hold him for the first time! He felt like a miracle straight from heaven in my arms. The overwhelming feeling of love and joy I felt for this tiny little bundle brought tears to my eyes that continued to flow for several minutes. I can't even begin to describe the gratitude I felt at being chosen to be his mother.
As the days went by, we worked into a schedule of holding, feeding, changing his diaper, taking his temperature and just gazing at his beautiful face to pass the time. He loves to be held and snuggled right in when the nurse placed him in our arms.
The finally diagnosed him with something entirely different than what they originally thought. He has a very rare Chromosome disorder called 6p22.3 deletion......yeah, I'm guessing you haven't heard of that! Either had we! Basically, what it means is that there is the potential for him to be diagnosed with any or all of the following: Anomalies of the brain, kidney conditions, heart conditions, cleft lip and or palate, hearing impairment as well as developmental delay and some learning difficulty.
Some of those have already been identified, others may come later or not at all. Time will tell. Some people have asked if that diagnosis is better than the Dandy Walker Variant that he was originally diagnosed with...and we would have to say, not better...just different.
I flew home on Sunday since Levi started school today. I felt it was important for me to be here for him. Sabrina stayed with her brother. I will fly back to Portland tomorrow so that I am there when he goes in for surgery first thing Wednesday morning. His estimated recovery time will be anywhere from 7-14 days and only Zachary will know when he's ready to go home. The doctors tell us that they will not be flying him back to Idaho so only when he is totally ready to be released from the hospital will they release him.
We are so blessed that Sabrina is available to stay with her brother. She put her life on hold to be there for him and we are truly thankful. Here are some pics of our sweet new baby!
Eyes open for the first time since he got there!!!
4 comments:
I love the name! He is such a sweetie. It's amazing how God often shows us a new path in our lives that is unexpected.
Sweetest little guy. Such a blessing.
You truely are the best parents! We love you and are keeping Zachary in our prayers!
His beautiful eyes! What a sweet little guy. Good luck with the surgery and keep us posted.
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