Zane's Battle Ahead

Zane has now lived one week and one day longer than some doctor's had expected he would, and I am so proud of him and overjoyed to have had this time with him. Go Zane go! At this point I am still only allowed to reach in and touch him with a sterile gloved hand, but I am hoping by the 12th to be able to hold him! One thing I love most is that I know he knows my voice, and several nurses have blessed me by letting me know that he is always much calmer when I am there. As I sing praise and worship songs to him I can watch on his monitor as his stats become stable, and I know he hears me! I love our time together.

The battle that Zane is currently faced with is certainly not one of ease. This little warrior has many obstacles to overcome. At birth he was put on a jet ventilator and a backup ventilator to assist with his breathing. There was a struggle with intubating him initially because of the anatomy of his esophagus and trachea, being they are farther apart and at an odd angle. They actually had to re-intubate as somehow in his first morning he extubated. He is now off of the jet ventilator and only requires the standard ventilator. He also breathes over his ventilator showing that he does have a breathing reflex, which is great. At this point doctors have said he may not ever be able to come off of this ventilator.

On the first day they had to put a chest tube in because of a hole in his lung that caused a pneumothorax (collapsed lung) to develop. The chest tube is now out and Zane is doing beautifully without it, Amen! Zane was also found to have a hole in his esophagus which inhibits him from being able to use a feeding tube. He is receiving all his nutrients intravenously for now. The concern is that with a feeding tube his food would leak out of the hole into his lungs and cause major problems. I should know by the end of the week what and if anything can be done to correct this for Zane. Please pray that God will correct this!

Zane also has a Grade 4 hemorrhage in his left ventricle and they are monitoring him for periventricular leukomalacia (PVL) which would essentially cause him to be brain dead in several areas of the brain. At this point in time the bleed is stable and has not spread. My prayer is that it will begin to resolve and the next CT scan will show evidence of resolution.

Finally Zane has what is called Patent Ductus Arteriosus (PDA). Which is a hole that fails to close in an infant's heart shortly after birth. Zane is currently receiving his second round of medication to help close the opening but didn't seem to respond well to the first round. After the first round it was still open and his kidney function was declining as a side effect of the indomethacin. By the end of the week they may want to operate to close the hole for Zane. I am praying that the Lord will do it for them, please do the same!

Zane has received two blood transfusions at this point, and may have to receive more, he is on bili lights to help his bilirubin level, and gets his medication and nutrients through a peripherally inserted central catheter (PICC-Line). The concerns that doctors have discussed as far as long term effects are Cerebral Palsy (mild to devastating), being brain dead, lung disease (mild to severe), Trisomy 18, Cornelia De Lange Syndrome, any other chromosomal abnormality and death. Also his preliminary testing for trisomy 18 came back negative but they are not able to rule it out completely based on that test alone. By the end of this week I should have a lot more information. From my understanding, currently they are sustaining his life until they can diagnose his condition and determine whether he will be able to survive on his own and tolerate the many possible corrective procedures necessary to do so.

Zane is such a mighty little warrior and the Lord is so faithful! I see people in the NICU and in the waiting rooms w/ tear-stained faces, mother's that seem to be feeling the weight of the world on their shoulders, but when I look at my son I am overwhelmed with joy. God has given my little boy life and I am going to soak up every ounce of happiness I am blessed to have with Zane. Today is not the day to cry, today is the day to be joyful because Zane is alive, he is a fighter and God is too! I love my son with all of my heart and nothing can replace the joy that the Lord has filled me with by allowing me these precious moments with Zane! I am just so thankful that the Lord has been so gracious as to teach me enough about Himself that I know I can have peace and joy in this time because of who He says that He is! Please continue to pray for Zane's health and sweet life, and for wisdom and discernment for me! Thank you and be blessed.