Play Baby Play

On Monday October 24, 2011 my baby boy went to be with Jesus. It has been 12 days and I haven't slowed down since, until this hour. There is an aching inside that doesn't go away. It's like a stabbing pain in my left side that seems connected by a string to the pain in my heart. It's always there, sometimes more agonizing than other, but it doesn't go away. I miss him so much; I am sure nothing in him wants to be back here, but I miss him. His soft curly hair, long eye lashes, 11 fingers, precious toes, his sweet heart, how he loved my singing and holding my finger. I miss him so much.

I will never forget the pain surrounding his death. The sunday before was so horrible. He began to pass away in my hands peaceful at first but then he began to fight back, like the warrior he is. It was the worst thing I'd ever seen and not something I hope to endure again as a mother. I don't know how he came back from that episode, and it grieved and sickened me to see the battle. I remember even telling him to stop fighting, that i would be okay; but somehow he made it through that day. All i could do after that was pray Zane would never have to relive that experience. The Next day his doctor explained to me that if Zane had another similar episode, longer-lasting, it would be his recommendation to give Zane a sedative in order to take away the suffering. This was on decision I didn't want to make. Criminals given the death penalty don't have to suffer the way Zane had the day before. If it happened again what was I supposed to do. I began to pray that God would make it so I didnt have to make that decision. A few hours later that's exactly what He did. Zane slipped into eternity so peacefully without the use of any sedatives. He didn't stop looking into my eyes as he took his last few teeny breaths. I said prayers over him, bathed and dressed him and waited for the funeral home to come pick him up. When the man arrived with a small basket I kissed Zane's head one more time, and laid him in it. As I laid him down a small sound escaped out of me, one that i can only describe as the muffled sound of a mother's pain who just held her son as he passed away. Since that day this aching has not left me. Inside I am screaming and filled with agony, but exteriorly I am quiet and still.

Some days have been worse than others. The worst day since, by far, was this past Tuesday. I had court all day that day which was painful in itself, but during the two hour recess I had to pick up my son. What was left of my son on this earth all fit into a tiny baggy that was placed into a small blue box. The walk from the funeral home to my car seemed endless. My legs actually felt heavier. I remember sitting in my car for a few moments staring at the black gift bag that Zane's 'box' was in before heading back to court. When court finally finished that day; feverish, chilled, w/ a tear stained face I got back into my car. I looked one more time to the passenger's seat before I headed to class. This time there was a bright pink gift bag filled w/ present's for Izzy, a Batman gift bag w/ presents for David, both from the kid's Nana, and then there was Zane's bag. The aching within me was so deep at this moment. Tears flooded my eyes as it sunk in a little deeper that in the rest of my time here I would not bring home fun gifts for Zane. Oh how I miss my little warrior baby.

Despite the groaning within me I find rest, I find peace, and I find comfort. Heaven holds me and God sustains me.  I am so weak right now and have this feeling that I am so close to falling apart but God! He comforts, cares, and provides for me as only He can. He prepared my heart so perfectly for this journey He brought me through with Zane Owen. We celebrated Zane's 119 days and God's power exhibited in each one of them with a worship service and the releasing of 119 balloons. So many people have come around me and my family in this time with prayer and support that has blessed me, and often times helped me get through these difficult days. David and Izzy have also been a special blessing to their mommy in this time, Izzy in particular.

The day after Zane passed away, without knowing what had happened, Izzy came into my room and excitedly exclaimed, "mommy Zane's not sick anymore! He's all better mommy!" I told her that she was right and asked if she knew where he was. She responded "umm in the hospital." I then explained to her that Zane got to leave the hospital and has a new home in heaven with Jesus. She got so excited and said "With Jesus? Zane's with Jesus! Yay! Yay! Yay!" Her heart and spirit about it is perfect and holy. Zane being with Jesus is something to be excited about and something to celebrate!

The night Zane passed away through god's grace I was able to write this short message to him as a reflection of my heart in those moments ...

To my sweet baby Zane,

You battled so hard and I am blessed beyond what words can express by each moment the Lord allowed us to share together! Have fun in heaven tonight ~ cuddle with a gentle lion, or play with a lamb, take in the splendor of the throne room, rest in our Daddy's arms! I am so proud of you Zane! Some people say that being a mom is like letting parts of your heart walk around outside your body, it gives me joy to know that a little peace of me is in heaven tonight. I love you Zane Owen Ramirez, you truly are the strongest person I have ever known.

Love you forever,
Mommy

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.

Surprise Labor & Delivery

On Saturday June 25, 2011 I had planned on spending a relaxing day with someone who is very dear to me, starting with a little time at the pool. However, by 11:30am I began having contractions. They were not that painful so I continued with the day as planned, but by dinner they still hadn't stopped and so I decided if they were still going once dinner was over I should head into the hospital. Then after dinner I went to the restroom and was surprised to find I had lost fluid along with my mucous plug. Then I knew I should head to Duke Hospital to be on the safe side.

Once at Duke I was hooked up to monitors, found to be 1cm dilated and 40% effaced, very shortly afterwards I was admitted. I was put on a liquids only diet in case a c-section was needed and then we learned that Zane was breech and would require a c-section. When I reached 3cm 70% they started magnesium sulfate to slow my labor, this was after about 30 hours of labor. This medication made me feel horrible, on top of back labor and a pounding headache from not eating anything for 26hrs my body felt terribly weak and like it was on fire. Aside from that, as soon as they started the magnesium my contractions became much closer together and doubled in intensity Thankfully the Lord blessed me with loving people that took excellent care of me, tending to every need before I could even ask. Eventually the contractions did slow down for a couple of hours but the intensity stayed the same. Then at about midnight, not having felt a contraction for 20 minutes I switched positions to lay on my side and was shocked by the most intense contraction and I knew Zane was coming out!

The doctors were rushed into my room to check me and almost instantaneously my room was filled with doctors and nurses, explaining that I would have to do the birth alone and would require general anesthesia. By the time they got me to the door the attending was having to hold Zane in and from that point I had four more extremely painful contractions before I went under. I was completely overwhelmed with emotions, knowing when I woke up I would find out if my little boy had survived, knowing that my body was doing everything it could to push him out as the doctor and I were fighting to hold him in, which I believe only increased the pain. I was excited and scared, praying between screams of pain for my little warrior.

Hours later I woke up from the surgery and the c-section felt like it was on fire, it was not comfortable at all. I asked the doctor how it went and he responded with a very guarded "It went okay. How is your pain." I told him it hurts and quickly asked how my son was doing, and he told me he didn't know but that he was with the pediatricians. Then he left and said he would come back to check on me in a minute once the pain had gone down a bit. I prayed and fought back tears hoping Zane was alive and that nothing went horribly wrong with my c-section, as those closest to me began to come in and sit beside me in the recovery room. I learned from them that Zane was alive, there had been a problem with his airway and what normally took 5 minutes to do, took 35 minutes, and could not be done at most hospitals b/c they lack the more advanced equipment that is required. One nurse said that in 35 years she had never seen a baby hold on that long, I knew that was God and my little warrior! Next I learned that my little man has a 6th finger on his right hand! My mom says that makes him an overachiever. It just made me smile because the first thing I did when my other two were born was count their fingers and toes and then laugh at myself for thinking they might not have ten of each! It seemed only right that my little guy would get an extra!

A little while later my doctor returned and explained the complication with my c-section was such that I would not be able to have a vaginal delivery in the future because of the cut they had to make on my uterus. Honestly, this was such a relief to me having been wondering if it was something more extensive like a hysterectomy or something. I am not thrilled by c-sections but it is definitely not the end of the world. The anesthesiologist required that my pain be at a four before I was allowed to go and see Zane so I was pushing the pain medication button as often as I was allowed so I could get back to him as quickly as possible. At one point about an hour after waking up I realized that my son was alive and tears of joy streamed down my face. The doctor had told me it was horrible and wouldn't be okay, but because of my God I was going to meet my little boy face to face. Finally around 6 a.m. after he was born at 12:29 a.m. I was allowed back to seem him, and I was even blessed enough to have a professional photographer document our first meeting! (I cannot wait for her pictures) Zane is the best looking little preemie baby! He has a head full of blonde hair and killer eyelashes. He is one of the teeniest physical representations of a miracle I have ever seen, and I could not be more thankful for each moment I have been blessed to share with my sweet sweet boy! Thank you all for praying him into this life and this time and please continue to do so, as he continues his fight for life!

This Week with Trisomy 18

This week and today has been one of difficulty to put it mildly, but the Lord continues to be so faithful, and fill me with His peace. Several weeks ago I was so blessed when I learned that God had healed my little Zane's heart. The joy of that news was such an incredible blessing to me. However, as this week and particularly today's doctor's appointment drew near I began to get a little anxious as I do before each doctor's appointment since finding out about Zane's condition.

Some people have been asking, "If the heart is okay then do they still think he will not survive, and why?" From what I understand the addition of a chromosome on the 18th pairing will cause Trisomy 18 babies to be unable to mentally process vital activities such as breathing, eating, etc. once they are outside of the uterus. While these babies are safe in mommy's tummy the placenta and umbilical cord do that work for them. Having an understanding that just because the heart was okay didn't mean we were out of the woods, I knew this appointment may be a bit difficult.

So what did we learn today? The good news is they now feel very confident that Zane does not have a clubbed foot which is wonderful! Also, his cystic hygroma at the back of the neck and spine is almost completely resolved. They were also able to rule out a cleft lip, which is great! However one of my concerns, that he was not developing as I haven't gained weight in the past month, was confirmed today. Currently Zane is two weeks behind where he should be as far as his size goes, which isn't a great sign. The issue that I learned about today that seems more disconcerting is Zane's umbilical cord. As I have mentioned previously, there is a cystic mass in his umbilical cord, as well as having only one artery where there should be two. Today I learned that there are several cystic masses now in the umbilical cord and they are quite large. When the doctor pointed out to me where the mass was, and what I was looking at my heart sank. The largest cyst in his umbilical cord is about equal to the size of the width of Zane's body currently. I am amazed and blessed that Zane is still alive and fighting after seeing so many of those masses, so large clogging up his life source. The concern at this point is that I am very likely to miscarry because if the cysts continue to grow they will not leave room for the nutrients to move freely through the cord to Zane. Currently the amount of flow passing the cysts is incredibly small but still working. My little man needs prayer for these cysts to miraculously resolve.

I have to admit that today was very difficult, and definitely sobering. He is my little boy, and it just didn't look good. He is so precious, he has a little tiny jaw, tiny clenched fists, and low set ears but is still so adorable even on ultrasound. My heart broke as I longed to save him, and I couldn't keep from feeling helpless for a moment. However, the Lord reminded me gently "I am the one that raises the dead, I am the one that heals holes in a tiny baby's heart, if anyone can save Zane it will be Me." I do not know what the Lord has for my baby boy, but I know no matter His plan, it is far better than anything I could do on my own. I much rather trust Him to save Zane, than for it to be solely in my hands. Also, I felt so blessed today by the experience of that particular ultrasound before I received the update on what was being seen. I got to watch him in 3D real time, kind of like watching a video of him squirm around. We got lots of great pictures of him in 3D, and while we were on regular ultrasound they viewed his little feet and got him to move around. It was so much fun to watch his little toes wiggle and his teeny feet kicking back and forth. I continue to be thankful for the time that i have been blessed with to feel Zane alive inside of me, for every second I hear his heart pitter patter, and for each moment I get to see him on ultrasound. Please continue to pray for Zane as he continues to fight this big battle each day. Thank you all, and be blessed!

Trisomy 18 Has Nothing on God

Oh my God you have overwhelmed me! Though i have been found unfaithful, destitute in my weakness, and so undeserving, still You love me, You allow Your mercy and grace to abound, You remain faithful! You have filled me with a DIVINE joy and pleasure unmatched by anything this world has to offer! I am swept away by a raging river of Your love!

Over the past few weeks we have learned that my baby is a boy which makes him a Zane Owen! Zane means God's gracious gift, and Owen means young warrior! The doctors were seeing VSD (a hole in the heart), possible pericardial fluid (abnormal fluid around the heart), and were concerned about more severe defects such as transposition. Today I was seen at Duke Hospital to receive a fetal echocardiogram for a diagnosis of Zane's heart condition(s).

I am by no means a sonographer or a cardiologist. However, my experience in sitting through several ultrasounds has moderately trained my eyes to what the fetal heart should look like. Several weeks ago as they looked at Zane's heart, before anyone said a word I could tell something was wrong. I did not know what it was, but I could tell it did not look the way it should, and that is when I was informed of the VSD and suspicion for further defects. Today as Zane came up on the monitor I looked at his little heart for so long, and to me it looked completely normal, a drastic change from the previous ultrasound. However, I had to wait for the doctors to tell me what they were seeing. I assumed I was probably not seeing what I thought I was and continued to brace myself for the worst.

After over an hour of looking and a few minutes of measuring the doctor gave me the best news of my pregnancy to date! Zane's heart is completely normal! That is nothing less than a miracle straight from Zane's Daddy and mine that is smiling down on us from heaven. I really believe the Lord healed and corrected sweet Zane's heart over the past few weeks. The only problem that was seen was that the heart was measuring a little small for my gestation, but the heart was perfectly proportional and looks as though it will continue to grow correctly. Zane, like every other baby, will just need as much time as possible to develop before I am holding him in my arms. I am overwhelmed by God's love through this miracle, He is so so good to us!

The Trisomy Journey Continues

I would like to start with a verse..
Psalm 139: 13-16

For you formed my inward parts; you knitted me together in my mother's womb. I praise you, for I am fearfully and wonderfully made. Wonderful are your works; my soul knows it very well. My frame was not hidden from you, when I was being made in secret, intricately woven in the depths of the earth. Your eyes saw my unformed substance; in your book were written, every one of them, the days that were formed for me, when as yet there was none of them. 

The last week was difficult to say the least but the Lord is soo faithful. Three days in the past week I had contractions that only stopped for a few hours in that time period. Doctors had attempted an amniocentesis the week prior but were unsuccessful because I began contracting during the procedure and they were unable to get the needle through the wall of the uterus. Basically the needle would push the wall all the way to the bottom and never go through. As many of you may know, a side effect of amniocentesis is miscarriage when it is attempted before 20wks. It was in these days of contracting that I did not feel the baby move. I was also receiving messages from someone I have known for quite a while that they were praying the baby would die, and that I was selfish to want to bring this child into the world. Finally because the contractions had  not let up I called the on-call doctor, and she suggested that it was probable that I was miscarrying . She said it was too early for me to be seen in labor and delivery, and if I saw blood i needed to go to the ER. Otherwise I could setup an appointment Monday with specialists I am working with through this pregnancy. 

So how was He faithful in this time? He has surrounded me with so much encouragement. On Sunday I went to a man named David who has been one of the major spiritual influences in my life and he and one other prayed for the baby. Then my pastor, Marc, allowed me to come in front of the church and share my story, and he prayed over me. After that we had a time of fellowship and so many surrounded me to encourage and pray for me. One man, not knowing of the messages I had received, began praying that God would come against anything evil spoken over this child, and I was completely broken by God's love to send him my way with that prayer. He just used one of His children to affirm to me in such a time of need that He has a deep and unshakable love for each child. 

The blessing did not stop there, late Sunday night my sweet little one began to move inside of me and tears of joy just streamed down my face! He is so faithful! The next morning my sister, and best friend, who is expecting my precious niece, Kayleigh, had an appointment and she was kind enough to let me come along with her and have the doctors check for a heartbeat just to make sure everything was okay. She would not have had it any other way, she is really an amazing woman. That morning we heard Kayleigh and my baby's heartbeats, both strong in the 150s! Then a church member that has already gone above and beyond to increase awareness of my baby's situation and the need for prayer, blessed me once again. Having considered the pain of not knowing whether your child is alive inside of you, this person went and bought me a pink stethoscope so that as I progress, in those times of concern, I will now be able to stop and listen and have peace. 

God is so faithful. In such a time of adversity He overwhelms me with peace, and surrounds me with His love by speaking to me through His children. I am so grateful for everyone's prayers and obedience to His calling, and I pray for blessings over all of you. My sister and I will be headed to an ultrasound appointment tomorrow, we hope to find out the sex and the doctors will be trying to gauge the extent of heart defects that the baby has. Please continue to pray, each prayer is such a treasure to me. Be blessed!

How I Have Been Blessed in This Time

One night I was sitting alone in my room, shortly after hearing the news about my baby's chances of having trisomy 18. I was on my knees in the floor, feeling as though the weight of the world was resting on my shoulders. I felt as though all sense of joy had left me. When I am really happy I sing to myself, often without noticing that I'm doing it. In that moment on that particular evening I couldn't remember the last time I caught my self singing, I had lost my song. Finally, the biggest weight of all was the question of whether this was somehow punishment for the things I had done wrong in my life. I try to live a lifestyle that is honoring to the Lord, but have often failed. I began weeping, and begging the Lord for mercy over my baby's life, asking for a miracle. Then in a few final words I asked that God would give me peace, and speak to me directly through what I would read next in scripture.

I tend to read the bible in order, more strategically, and not so much picking random pages each day. On that day I was in Isaiah, and thus far it had focused on God's judgement and wrath, which did not really inspire much confidence that the next chapter would lift my spirits. However, as only God can time things, the timing was perfect. My next chapter was Isaiah 12, and it was unimaginably encouraging. Literally each word touched me, and applied to exactly where my heart was. I would encourage anyone to read it to see how fitting it was. It has been one of the biggest blessings, a sort of calm in this storm I have found myself in the center of.

On a separate note, I am 17 weeks today and had another doctor's appointment. It was my first time meeting this doctor, and he was amazing, possibly the best OB I have met thus far, and I have met quite a few over the past few years. The biggest blessing of this appointment was hearing that sweet little heart beat, so baby has made it through another week, and another day. Please continue you your prayers, it is such a powerful tool that we have all been blessed with.

Life since learning about Trisomy 18

Since I learned that my child has a greater than 90% chance of having Trisomy 18 my life has been unimaginably different. I found that from day one to today my attitude, as well as my understanding continues to change. 

After the first appointment, when I had almost no understanding of what was really going on, from my perspective having a baby with Down's Syndrome would have been a blessing. Now I am praying and hoping that I will at least have the opportunity to hold my child. The doctor's are not optimistic at all and I am a realist, but I have also seen the miraculous healing power of God firsthand. From what I understand they do not expect my baby to survive very long after the birth, if he/she makes it that far at all. If this baby lives it will be purely by the grace and power of God. 

While I believe this news is hard to handle for anyone that is faced with it. I believe in most cases mothers are the most severely impacted by an indication that their child has Trisomy 18. It impacts so many, especially the fathers, but most mothers have an instant connection with their child as soon as they know they've conceived. As I sit through each ultrasound I know that this child is as much my child as Isabella and David are. My love for this child is just as strong as it is for my others, and continues to grow with every kick, every ultrasound, and every passing day. 

What amazes me most about this experience is the many questions I have been faced with and will continue to face. First was life or death, termination or continuation of my child's life. That was the easy one for me. I have an irreplaceable sense of peace knowing that this is in God's hands and knowing that His will is best. I know whatever the outcome I will have peace. 

Amniocentesis was the next dilemma I was faced with. It has a 0.5% risk of miscarriage but without it doctors would have a more difficult time knowing the best way to proceed once the baby is born. Should they do comfort care, or try to operate and repair the baby's heart. My struggle with this decision is the risk, 0.5% may not seem too major but I always seem to be the exception and not the rule with medical procedures. Kind of what can go wrong will go wrong. A prime example would be how the first attempt to do the amnio. failed because my uterus started contracting during the procedure and the doctor was unable to get the needle to breakthrough the uterine wall. Now I am left contemplating whether or not I should allow them a second attempt.

There are other questions that are more ominous, questions which I usually prefer not to think about. I know that the Lord can do a miracle and completely save and heal this baby, but I do not know whether or not that is what He will do. So I am faced with wondering if I should choose to try and treat aggressively or to give the baby comfort care, and worst of all wondering if in a few months I will be responsible for handling funeral arrangements for my child. The thought of this is unbearable, and immediately weighs me down when it enters my mind. I don't want to lose my baby, I really, really don't. 

I cry once everyday, but the hardest days are those when the baby doesn't move, or when I have a doctor's appointment, or when I have contractions. Never knowing whether your child is dead or alive is so incredibly hard, you cannot even put it into words. My breath catches before each ultrasound, and I stare at the screen without blinking searching for the heartbeat or some minor movement. Once I know the baby is okay I am left fighting back, what seems like, gallons of tears and intense nausea. The only way I think people would be able to begin to understand the emotions that I and many others face in this situation is to be a parent themselves. As a parent just imagine if you knew something was horribly wrong with your child, and the next phone call you received would be a doctor telling you if your child had lived or died. The intensity of that emotion is what I face each day, and is at it's strongest on the really hard days. 

Although I cry everyday, I also have joy. The Lord is so gracious, he gives me continued peace, and a reason to smile each day. I cannot wait to see whose lives he touches with my baby's life, but I know that some and possibly many will be deeply impacted by my sweet little baby. I have another ultrasound in 2 weeks and I will post an update then! Please continue to pray and believe in His faithfulness and sovereignty!

What is Trisomy 18???

So what is Trisomy 18? When I first heard these words I could not remember them five minutes later. This is just not something that we hear about commonly, even though it affects so many around us. This genetic defect, also known as Edward’s Syndrome, is a chromosomal defect that occurs during conception. It is caused by either the egg or the sperm not splitting properly, and creating an extra chromosome in the eighteenth pairing where there should only be two.

It sounds harmless enough, but it can have some very devastating impacts on the developing fetus. Some effects of this defect include mental retardation, clubbed limbs, severe heart defects, low birth weight, a large cystic mass at the back of the neck, and much more. The prognosis for babies with Edward’s Syndrome is extremely poor; 90% do not survive past their first year, 50% do not survive past the first day, and less than 10% are able to survive up to adolescence. Obstetricians offer first trimester screenings to expectant mothers to find if their baby is showing an indicator for this defect or any others. A woman under the age of 35 is highly unlikely to have positive results, and before the screening most women are given odds of 1 in 10,000 that their child will have a genetic defect. Below is a site for the Trisomy 18 foundation, a resource that has been very useful for me.

 Trisomy 18 Foundation

How This Trisomy 18 Journey Began

I found out on a cool day in January, 2011 that my husband and I were expecting our third little edition. Our relationship had been an uphill battle almost since the beginning. It was my love for my husband and my faith in God that kept me, and keeps me committed to this marriage. He and I had been doing well, and I felt that we were finally working through the major issues, but it was about the same time that i became pregnant with this baby that things started on a fast downhill slope. It was a few days after I told my husband about the baby that he informed he was feeling divorce would be the best thing. Ours is an incredibly long story that has us currently living separately, and me adamantly committed to the well-being of my children, as well as praying for and believing in God's power to make the changes necessary to bring reconciliation to this marriage.

However, this is not our story, it is our baby's. I had decided to have the first trimester screening for the first time with this child. I hadn't done it with my other two, but that was because I was unaware that it would include an extra ultrasound! I love ultrasounds and was excited to have any chance to preview my baby before his or her debut into the world. I never anticipated that the tests would return any abnormal results.

I was actually told by the ultra sound tech. on the day of my screening (2 weeks after the blood tests) that I probably had nothing to worry about because I was so young. (I am in my early 20s) I like most other women was given 1 in 10,000 odds that my baby would have a genetic defect, any genetic defect. I sat for 45mins with my dad near by, watching my little baby move around, its little heart beating a strong rate of 169BPM. It was only after having this time to become even more attached to my sweet child that a doctor I was meeting for the first time approached in my patient room saying, "I have horrible news."

At first I assumed the doctor was joking b/c I was so unsuspecting, but as I studied his face I became acutely aware that his distress was genuine. He talked for several minutes explaining my results and what my baby was indicating. The only words I remember hearing were "lethal" and "incompatible w/ life", I believe that I was literally in a mild stage of shock. There was one last thing he spoke about that I will never forget, the word "termination" was what he used. He suggested I ended my baby's life so strongly, he all but told me it was what I should do. The most I spoke in that brief meeting was to say, "I will keep my baby. I will not have an abortion" and when he hinted that I would change my mind, I responded with this, "I don't believe that this is my choice. I have strong convictions about this and I will not change my mind."


A few days later I sat down with perinatal specialists and genetic counselors who helped me to understand everything that I was told and could not take in a few days prior. My baby had a cystic hygroma (fluid at the back of the neck) measuring 8mm, a clenched fist, a clubbed foot, one artery in the umbilical cord where there should be two, a cystic mass in the umbilical cord, and they were suspicious of HYDROPS (fluid in the abdomen, heart, and lungs). My blood tests that screen HCG levels and PAPPA levels had strongly indicated Trisomy 18 or Trisomy 13. Everything combined, the doctors felt very confident that my baby had Trisomy 18. I had gone from odds of 1 in 10,000 to 1 in less than 2 that my baby has trisomy 18.


At this point I know that all results remain unchanged. The baby still has the hygroma, refuses to open that little hand, has a clubbed foot, one artery in the umbilical cord, and is adamant about not letting all of us know whether we are seeing a he or a she, a Zane Owen or a Michaela Brianna. The changes and new information I have received have not at all resembled good news. The cystic mass in the umbilical cord has increased in size and we now know that the baby has a Ventricular Septal Defect (VSD). The doctors are highly suspicious of more extensive problems with the heart, as am I, but they were unable to get the necessary angle to tell me with certainty what they were looking at. I am not an expert by any means, but I have seen enough ultrasounds to know what those little fast beating hearts are supposed to look like. I have always been able to see each chamber, but with my child I just could not see those chambers. Before doctors told me of the heart defect I had told my sister that something was wrong with the heart. I did not know what it was, I could just see something was wrong.


On that day I agreed to allow them to attempt an amniocentesis which would give the baby a true diagnosis. I had been strongly opposed to this because of the slight risk of miscarriage with the test, but with this new information the doctors felt that having a diagnosis would be extremely beneficial in coming up with a birth plan. Helping all of us make a decision on whether comfort care would be best, or if the baby would be a candidate for the necessary heart surgery. The amnio. didn't work and was extremely uncomfortable.


Today I would ask that any reading this pray diligently for God's will in this baby's life, and for His continued peace to fill my heart. Pray that He will give me discernment and wisdom in making the many life or death decisions that I am faced with that directly affect my baby. I am currently reconsidering the amnio. and I am scheduled for another ultrasound in two weeks, and a fetal echocardiogram when I reach 22wks gestation.