Dear friends and family,
Wow! What a surreal experience this has been. We are on Day 7 of this journey and, as you can imagine, it has been a series of ups and downs. God is definitely omnipotent and knowing that has given us this amazing sense of peace through each hill and valley. Additionally, our support system, comprised of each of you, "fills" us. We are functioning on energy that each of you has given to us in the form of calls, e-mail responses, play dates for Carter and Addison, meals that you have brought, visits, hugs, flowers, but mainly, PRAYERS. We have never been more present with the Lord and the sweetness it offers is so hard to describe.
Let me tell you about Zachary.
He's amazing. Each day has offered the spectrum of small glimpses to "burning bush" symbols of his purpose. The first days after his birth included a series of tests and trying to understand exactly what we were facing. He was in a large room at the NICU with all of the other sweet miracles. That was particularly hard. It was a dark room with lots of beeps and alarms and such sensory overload, that it was hard to just hone in on the presence of our baby. On Friday Zachary was moved to his own private room (still in the NICU), but God has provided us the serenity and space of his own palace! We have placed pictures of his brother and sister all over the room in hopes that he feels surrounded by his family.
The team of doctors and nurses caring for Zach has been amazing. Not only are they incredibly technically competent, but the empathy and kindness with which they offer their care has been exactly what we've needed. On Friday he had surgery to repair an umbilical hernia. (A part of his intestine was inside his umbilical cord.) They also removed the sixth digit from each hand since he was already under an anesthetic. The surgery itself went well, but the unfortunate outcome was that he needed to be placed on a ventilator to help him breathe. (Up until then, he was only using a nasal cannula to assist with breathing.) When they tried to remove the ventilator on Saturday, not only did he not breathe well on his own, but the process of trying to get the breathing tube back in was very scary...lots of nurses, doctors, and repertory therapists that huddled around him in a flurry to get it back in. They finally called an anesthesiologist (versed at putting in tubes) to do the trick. He has been able to rest well since the surgery and now the wait and see begins again for when we can remove the ventilator.
Our dear friend and Pastor, Nancy, came with us to the hospital on Friday to pray with us and upon learning his surgery was moved up, she agreed to perform a Baptism on our precious baby. It was very formal...water in a baby bathing tub! But if you know Nancy, you know it was tender, eloquent, and the presence of the Lord was apparent. My mom brought him a beautiful cross from Texas that dangles above his incubator.
Like most newborns, Zach sleeps a lot! But it is so incredibly cool to see him react when we are there. He opens his eyes (they are blue) and closes his eyes to feel the warm stroke of our hands. I liken him to a kitty cat...tightens his eyes when you stroke his forehead. He also follows the sound of our voices when he opens his eyes. I also swear that he smiled once. With all signs of interaction, we tell him thank you! These are his little gifts to us.
Both Carter and Addison have met him. This, I will admit, has probably been the hardest part for me. They have a member of their staff at the NICU that helps and councils siblings. She spent about 20 minutes with Carter before he went in to meet Zachary to talk with him about what he might see and to try and get a gauge for what he might be feeling. They are telling us the most important thing is to be sure that Carter doesn't think that he'll "get" what Zach has or that he, in any way, had something to do with this. At the same time, we must gingerly relay that Zach is sick. Carter often asks if Zach is coming home today. It's a line I almost can't cross for fear I won't be able to get back over. Addison's visit was what you would expect from a 17-month old: tentative, cautious, and more interested in the stuff in the room than the baby. She was very curious about him but did not want to get close. A few times, she did wave at him. She knew he was there.
The geneticist has confirmed that trisomy 13 is his fate. Now, it is really an hour-by-hour and day-by-day journey. Our goal is to spend as much time with him as possible while also trying to maintain some shred of normalcy for the other kids.
Look Mom, I have 6 Toes! :)