Yesterday I was able to sit down with Zane's providers and discuss many of my concerns and get a feel for what their prognosis was. When Zane was born he seemed to be doing quite well all things considered. However, over the past month i have noticed a gradual decline. His due date was 9/19/11, so at this point Zane should have been off the ventilator quite some time ago, he should weigh at least 4.5 lbs (2kg), and be tolerating full feeds. Not for lack of trying, Zane has thus far not accomplished these critical tasks and is showing what is medically referred to as 'failure to thrive'. My question to his providers was 'how long do you keep trying what we are trying before there is a confidence that this is something he is not able to do? are we at that point or are we getting close to that point?' I feel that this is an extremely difficult subject to broach w/ a parent and doctor's certainly don't want to do it pre-emptively, but once i initiated the doctors were sad admit they share the same concerns. It was explained to me that if by his due date he still was not progressing in these 3 crucial ways, i would be left w/ the difficult decision of either taking him off the ventilator letting nature take it's course, or consider doing a trach requiring him to be on a ventilator for the rest of his life.
So why one month? We were still waiting on some genetic testing results as well as an updated head ultrasound to assess his brain bleed. This month would also give him time to grow and see if he could establish a little more consistency in that area. As i left the meeting i was unimaginably overwhelmed. I had 1000 thoughts and questions buzzing through my head and whenever i tried to talk to some it was as if i drew a complete blank. I couldn't organize my thoughts or communicate my concerns. I almost felt as though my body was sedated and my brain was given a shot of adrenaline. There were 3 predominant thoughts though. I kept picturing Zane, his sweet little face and blonde curly hair, and imagining going to the hospital one day knowing they would turn everything off, that i wouldnt hold him again until God brought us back together again! An agony twists inside of me as i think of holding him for those last few moments, watching him take his last breath, singing over him as he flies to Jesus. I pray and believe that God can do a miracle and save me from such a day. The second predominant thought in my mind was what would life be like on constant life support, always connected to a tube in your throat? Are you able to live an enjoyable life w/ something like that or is it a constant battle and struggle? Finally the last thought that overwhelmed me was a question which was, "God, what was the point? I know that your plan is the best, but I am trying to understand what the point was." As I meditated on that thought God broke in w/ his faithfulness and reminded me of something very important. A few short months ago i was crying out to Him, weeping, and just begging for the chance to meet my son when so many felt that was something i would not get to do. BUT GOD! God allowed me the opportunity to not only meet my sweet little boy and see his precious face, but to also hold him close to me and spend these past 2 precious months letting him know he is deeply loved by his mother and so many others. I have enjoyed every moment of praying and singing over Zane, and I continue to hope for many more moments to come. But no matter the outcome I praise you father for blessing me w/ the opportunity to see Zane's face so that i will know my son when i see him in heaven!
And what was the BIG news of the month??? If you haven't already heard or figured it out, today we received a positive diagnosis for Cornelia De Lange Syndrome. I have so much research ahead of me and a lot of unanswered questions! i will hopefully post an update soon on what having CDLS actually means for Zane. In the meantime please continue to pray for strength, wisdom and provision for me. The drives back and forth to duke each day are getting expensive! (but God continues to provide) And pray that Zane will grow and BREATHE!!! thank you everyone!
I am friends of Savannah Forquer and I immediately felt for you and your family when I heard of your situation. My baby was born at 24 weeks and had a lot of the same struggles that Zane is having. We will be praying for you, your family, and baby Zane. God is able to heal, and His way is best. I am so glad that you trust Him with your baby, since Zane was the Lord's baby first. He knew his name before you did, and each day of his life has already been known to the Lord. God bless you, please keep the updates coming and I know God will be faithful to you.
ReplyDeleteMarissa