No News Really is Good News

Where is Zane today? Well, the lesson of the week for me has been that 'no news is good news'! The less my phone rings, the better. I had a meeting this past Friday to discuss Zane's prognosis and his new plan. Many had such high expectations of Zane not doing well when he was taken off the ventilator because he did so poorly last time he was taken off, that we hadn't really made a structured plan for if he succeeded. But, succeed he did!

I think that this meeting was the most refreshing meeting in regards to Zane since the time I found out his heart was normal on the fetal echocardiogram! Doctors cautioned that he is still high risk for having a severe episode of apnea that would cause him to pass away, or for being unable to retain enough nutrients to thrive properly, but they also had a greater sense of optimism than i had ever received. With a big smile the doctor explained that 'while those severe things could happen, they haven't yet, and we don't know when or for sure that they will happen. So right now what we have is time, which is great!' After i heard this it was hard for me to maintain focus, i wanted to stop him mid-sentence just to say 'Wait! Good news? Is this really good news about my son? Am I actually hearing that we are going to start moving in a positive direction? Can I actually be a little excited now and not have the thought of Zane's death constantly looming in the back of my mind?" So many miracles and amazing things have happened with Zane but this is what I have been waiting for, the moment when we stop preparing for his death, and can realistically begin preparing for his life! Oh what a blessing!

The road ahead is definitely a difficult one and it could be months before we are able to bring Zane home, but at least we now have a goal we are working towards! Our hope is to increase his nutrition, figure out what Zane will tolerate eating best that will allow him to grow big and strong, and hopefully in effect decrease his episodes of apnea. Since removing the tube we have found that Zane's apnea is most often related to an obstruction in the airway (usually a build up of mucus he is unable to cough up), as opposed to the inability neurologically to breathe consistently. He seems to have a few times where he will stop breathing b/c of a neurological problem but those episodes have all been very short, and he has recovered from them like the champ he is!

Today what I know about Zane is that after we took his tube out he lost weight b/c everything he was doing required more calories, and for the most part he was receiving just enough breastmilk to keep him hydrated. However, we have now increased his feeds and nutrition. Zane is gaining weight, and has not had an episode of apnea, emesis, or a bradycardia in 2 days!!! These things are such a huge blessing to me. This is why no news is good news! As opposed to earlier this week when his heart rate was dropping down as low as 11, yikes stripes! Each day is really such a blessing and no news has truly been the best news of all! Please continue to pray specifically for zane to grow, handle feedings well, breathe well, full resolution of his brain bleed, and healthy mental and physical development! Thank you all so much

Go Saints Go!

On Thursday I walked into the hospital wondering if I would be leaving Friday filled with grief over losing my son. As I walked in I ran into a girl that has become a common face that greets me in the evenings as I arrive at Duke. The girl asked how my son was doing and with a heavy heart I explained that they were not sure Zane would make it through the weekend, and would be taking out his tube the next morning. She had become a friend through our brief conversations each night and was upset that she would not know what happened Friday b/c she was not working. I explained that if she did not see me anymore she would know what happened.

Tonight I left the hospital for the first time since they took Zane's tube out, as arrived on the first floor the elevator doors slid open and my sweet friend was sitting at the desk! We both looked at each other with complete joy as I exclaimed to her with such relief "He is still alive!" 4 simple words that bring me an indescribable amount of happiness. As I drove the forty-five minutes home tears of joy streamed down my face! I am so completely humbled by the love of the Lord and His many children that have lifted my baby boy in prayer. The creator of the universe heard the cry of His children, reached out and touched my son, MY son! Thursday night I desperately reached out to a few friends asking them to join me in prayer and by Friday afternoon 30,000 people had agreed to pray over baby Zane! It is an awesome thing to be a part of this community of believers and to watch God at work. I do not know if Zane will still be alive tomorrow, I do know he has a long road ahead of him but tonight i am rejoicing! My baby went his first day today without having an episode of apnea, the day is not over yet but this is a large improvement on the previous days! It was also his first day since having the tube out that he did not spit up at all AND he required no pain meds! I feel as though I am going to collapse beneath the love of my father! Oh how you bless me DADDY!!!

Zane's nurse Marie and I have decided that Zane was reborn on Friday! Since his tube was taken out he has reminded us all of a newborn! All these weeks before he spent 95% of his time sleeping and was very unresponsive, now without the tube Zane has been looking at his mommy, lifting his head, and almost accidentally rolled himself off of mommy's chair! He is such an over achiever! It just touches me so much to see his little eyes open wide like they never have before! The feeling I cannot shake is that this weekend has made everything worth it. For the first time I feel that Zane is really enjoying his life and absorbing an overwhelming amount of love from so many people! He is busy being a baby which is just what he needs to be doing today! Thank you everyone so much for you continued prayers! I truly cannot say thank you enough! Each of you have played a part in saving my son's life by taking time to pray in faith to God to touch baby Zane. Go Saints Go!

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 :)

Oh What a Month!

This month has been a roller coaster for SURE! The doctors at Duke have been trying diligently to get Zane to grow, get him  on c-pap, get him to tolerate his feeds and get some answers! I am truly blessed by the incredible care that Zane receives daily at Duke! This month we also had a concern for pneumonia and necrotizing enterocolitis. Necrotizing enterocolitis has been ruled out for now and he was treated successfully for pneumonia. The biggest news of the month came tonight but before i share that, I will share about my meeting yesterday.

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!

So Many Updates

The geneticists just called and confirmed that the tests were normal and gave me a lot more information. Apparently there are about three more levels of tests they will want to do before they can completely rule out a genetic defect altogether. However, his blood test coming back normal is still a GREAT thing! If a genetic defect is formed at conception it will be evident in all areas of the body; blood cells, skin tissue, etc. If it is formed a few weeks after conception that means part of the body has formed before being effected. So now they will be doing another chromosomal test on his skin tissue as well as a test to specifically address Cornelia De Lange's. Their primary concern is no longer Trisomy 18, AMEN! These tests may take about 9 weeks before they are both performed and I have the results back. Little Zane needs to grow a bit more before they can do the skin tissue test! Following those tests there a few other levels of testing that will be done, we still need lots of prayer!

The good news is when they did his echo today the hole in his heart was still open but they decided against surgery because Zane is not symptomatic. It may close on it's own as he continues to grow, but for now we will continue to monitor him! Also, the swelling in his brain has NOT increased! What a blessing! Last but definitely not least, and what I am most excited about; they are going to begin feeding him breastmilk today through a feeding tube- 1/2ml ever 6 hours! He REALLY needs this so this is WONDERFUL! Thank you all for you many prayers. The Lord is Moving!

The Geneticist just called and confirmed that the tests were normal and gave me a lot more info. Apparently there are about 3 more levels of tests they'll want to do b4 they can completely rule out a genetic defect altogether but his blood test coming back normal is still a GREAT thing. Next they'll do a skin tissue test but they need to give him a few more wks to grow! please continue 2 pray for R lil warrior ♥

Go Zane Go!

(Grab your tissues Girls!)
~The doctor called today and gave me a lot of info about tests they ran on Zane today. They think that the hole in his esophagus has closed but not positive! PTL! They are doing an echo tomorrow to see if the hole in his heart has closed, please continue to pray for that! They did a test today to see if they can start him on breastmilk through a feeding tube, as they put the contrast down Zane had an aspiration and it caused his lungs to collapse so he will have to be back on the jet ventilator for a couple of days. We will know in a few days if he will be able to tolerate the feeding tube - pray :) Tomorrow they will also check the swelling on his brain so please pray that it is stable or has reduced in size! okay get ur tissues ...

As i was about to get off the phone i caught myself and said "oh did you know if they got the test results in from the chromosomal testing?" and the doctor said "oh, yes i saw a note in his chart about that and the tests came back completely normal." "Normal? As in Normal, NORMAL?!?" "yes, normal. i will talk to the geneticists tomorrow and have them call you but i have a note that says the results were normal, NO genetic defects!" AHHHH!!!! i LOVE JESUS SOO SOO MUCH, wow HE IS AMAZING!

So what exactly does this mean?- He was tested for every known genetic defect from down's syndrome, to trisomy 18 to cornelia de lange, all of them and he doesnt have ANY of them! We have now ruled out all KNOWN genetic defects including the LETHAL ones! Thank you thank you jesus!!!! You have overwhelmed me w/ your love and i am completely undone! IF Zane does have a genetic defect it is something that has never been diagnosed before and that is still a possibility. BUT, i believe this means that at this point they will begin treating Zane as a preemie w/ just preemie struggles and no genetic defect! Thank you everyone SO much for praying and PLEASE continue! Zane still has a BIG BATTLE ahead but this was a HUGE HURDLE to overcome! Doctors had told me early in the pregnancy that he would not survive b/c he would have trisomy 18 and pushed me to have an abortion and now here he is born 3mos premature without trisomy or any defect and ALIVE! Thank goodness this was in the Lord's hands! Amen! I just wish that i could tell every woman that faces this kind of news in a pregnancy Zane's story so that they could know the power of prayer and how prevalent God is TODAY. God is MOVING today! He is performing miracles all around us! Please keep praying and be blessed!

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.