Zane is God's Warrior!

The weeks I have had have been absolutely insane!!!After Zane received his diagnosis of Cornelia De Lange syndrome i was able to have a family meeting at duke w/ several of his providers. Before I go into detail I have to thank everyone for the excellent care Zane has received! Every one seems to genuinely care about Zane's outcome and desire nothing but the best for him. I have been particularly touched by the love shown to Zane and I by his nurses Marie and Nancy, 2 sweet women who love to love him!

In the meeting that day I was given an overwhelming amount of information, and I was able to ask so many questions. The people present were able to breakdown each of Zane's problems and the effects I could expect to see as a result and they were as follows ...
-Microcephaly- indicates a developmental delay intellectually and physically
-Brain Bleed- as a grade 4 would at LEAST cause a mild amount of cerebral palsy
-Severe effect of Cornelia De Lange Syndrome- causing Zane to not be able to walk, talk or interact, not grow correctly, as well as not be able to tolerate feedings.
-Apnea- would cause him to pass away unless given a permanent breathing tube in his throat (tracheostomy).
Zane doesnt have just one of these things but all of them combined. The doctors anticipated quality of life if zane was given a permanent breathing tube was that he would also require a permanent feeding tube in his stomach, a fundoplication to prevent him from having reflux, he would not be able to walk, talk, or interact and would be confined to a stroller.
The doctors explained that Zane was physically ready for his breathing tube to come out, his lungs were fully developed and he had the body mass he needed to breathe effectively. It was time for Zane to prove if breathing was something his brain tells him to do consistently! The decision I had to make was if Zane did poorly what I would like the doctors next move to be. Do I allow God to be God/let nature take it's course, or do I have the doctors connect a permanent breathing tube to his throat w/ the understanding they feel he will never walk, talk or really enjoy his life.
Ultimately through this whole process I have had 2 goals. Number one to allow my son's life to rest in God's hands and doing what i believe He would require of me as a mother to advocate for my son to have a full life. As a mother this decision overwhelmed, especially as each day I saw my little boy become more and more uncomfortable. I made the choice that we would get Zane as ready as he could possibly be to breathe on his own with the least amount of suffering possible, then take the tube out and leave the rest up to God. I know that He is alive and active and in the miracle business. The Lord is able to give Zane everything he needs to live a full and happy life! The next day I was informed that his doctor expected Zane would be the most ready on September 15th or 16th. Everyone helping care for Zane made it clear that they didnt expect him to make it very long after the extubation. They explained that he may surprise us all but they had not seen a child with zane's conditions survive. We discussed different options for a memorial service should he do as they expected as well as different things we could do while he was still here to enjoy the time we had. Taking the tube out on the 16th gave me less than a week with my little man should he not survive. By God's grace I was able to have peace and enjoy the moments I was with Zane. I stayed at the hospital every night I could, read him stories, sang him songs, talked to him about heaven, made footprints and special hand molds w/ him, and even let his big sister meet him. In the moments I was not holding him I could feel a groan in my spirit, an ache over the life of my son! I would weep as I cried out to the Lord to give full life to my son, to allow me the blessing of more time w/ His baby! I was overwhelmed by the realization that God had already used Zane to touch so many lives, especially mine. He gave me 2.5 months w/ a baby that I was told probably wouldn't survive birth. I got to see, touch, kiss and snuggle my little miracle, what a blessing!
As friday morning quickly approached my mind would race as i tried to imagine what the outcome of that morning would be. If he didn't survive how would I? How would i bear it? How would I continue on w/ my life, w/ school and w/ work? How would I continue to be the mother my 2 other babies need me to be? I wasn't sure exactly what the answer to those questions looked like but I knew God would give me the strength and supply all my needs.

Yesterday morning was Zane's big day, he needed to spread his wings and fly! We needed God to help him show everyone the one in a million baby that he was. Each minute we got closer the more real it became to me. The more acutely aware I was that soon God might be calling Zane home. That morning almost 30,000 people on facebook alone joined us in prayer as doctors took the tube out. With my family surrounding us with love and prayers, Zane's nurse Marie gently removed Zane's tube. I know at that moment I felt like my chest was collapsing and I wasn't breathing, I am guessing everyone in the room was holding their breath hopefully waiting for Zane to breathe effectively on his own. Zane coughed a little as the tube came out and began taking breaths on his own! One of my sweet friends Layla who is extremely talented was nice enough to make herself available to photograph these precious moments. We took pictures w/ Zane's brother and sister, as well as several other family members. Zane's breathing was labored and he began to lose color in his face. The nurse asked everyone to leave at this time so I could have time with just me and Zane. Layla stayed a few more moments and took some special pictures of Zane and mommy. Then it was just me and little man. I felt Marie wasn't sure if Zane was going to improve from this point and tears flooded down my cheeks as I thought that my sweet warrior would soon be with my creator. I whispered through my tears that I loved him so much. I told him how proud I was of him for fighting as long as he had. I explained that I understood if God needed him in heaven and that i would not be upset with him. I cried the most as I said " if you need to go to heaven just remember mommy loves you so much and I will miss you every day! I did everything I know how to help you have the best life you possibly could here with us." Once I finished saying that I began begging God to break in with his power, to cause him to live a full life. After about 10 minutes I had 2 people that are very close to my heart come back in the room to support me through this time. As they entered I blinked through the tears and realized Zane's color was beginning to come back and his breathing was looking more and more comfortable.

Zane did not stop there! He continued to breathe on his own for the next 10 hours! Zane's doctor came in and said she was so excited that Zane was proving her wrong and hoped he continued to do so! Then at about 8:45 Zane spit up and stopped breathing. It felt as though we were about to lose him. The Lord overwhelmed me with peace as I watched my son lose all of the color in his body. There was a brief moment that I wasn't sure if he was still alive. I gently began rocking him back and forth and soon his color began to return! His breathing started out shallow and periodic but after about an hour he was back to normal! Praise Jesus! It has now been 36 hours since Zane has had his tube out and he continues to do very well. He has had a few more episodes of spitting up and not breathing well, but none like that first one!
From the doctor's perspective if Zane can do this for a week they will feel more confident that he is neurologically able to breathe consistently. The next hurdle that we are facing is getting Zane to tolerate his feedings. Right now he is eating just enough to keep him alive, so we need to figure out how to get him eating enough to put some meat on his bones!

God continues to overwhelm me with his love as He moves in my child and strengthens him. I am so grateful for the miracles He continues to do in Zane and for the thousands of people that covered his life in prayer! The tube in his nose is different from the ventilator b/c it gives him oxygen but doesnt actually do the breathing for him :)