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!
Cornelia De Lange Baby
Zane Owen-June 27, 2011.~1lb 15oz-13in
Sleeping Sweetly
Wednesday, July 13, 2011
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 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!
Monday, July 11, 2011
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!
~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!
Tuesday, July 5, 2011
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.
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!
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!
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