Nissen and Mic-Key

Well, it is here. Time for the nissen fundoplication and mic-key gastronomy surgery. This morning started off early. We were up and going by 3:00am and nervous as can be. We arrived at Vandy at 6:00 and met with the anesthesiologist, surgeon, nurses and assistants. I had a million and one questions to ask. Some I wish I had not asked. Ignorance is bliss--right? Honestly, I even told Jeff we can still leave, they haven't started on him yet. Part of me was very serious about taking him and running.

We were told to expect John to have breathing issues during surgery and it is likely he will be in the ICU on a vent for sometime. His breathing likes to act up after most procedures. This was a huge concern for him.

Our first update came after about an hour into surgery. The nurse stated his vitals are normal and she will call with another update in another hour. Second update...about an hour later "Everything still going fine, Dr. Rauth still working and will call with another update." Then we waited over two long hours before we heard any word from his nurse or doctors. Jeff slept through every update, sure was wishing I could have done the same. I thought several times that I was going to have a full blown panic attack, because I just new something wasn't going right and that is why it was taking longer than expected. Finally, our name was announce to go to conference room 3.

We entered the conference room and waited anxiously for Dr. Rauth. As he began talking, he apologized for the time it took to complete the surgery. Then went on to explain when they opened him up he noticed something "odd". This something "odd" was called Morgagni's hernia and pretty large. We went on to learn that this is a rare hernia with and can be life threatening- 45-62% mortality rate. What if we had not done this I asked? He went on to explain all the testing we have already had would not pick it up because it is difficult to diagnose due to it's location. He said most doctors would see this as pneumonia on X-ray and would not suspect this hernia. Now--is this a God thing or what? Went in for a surgery I really didn't want him to have and a blessing I didn't know I would receive occurred. Anyway, he went on to complete the nissen fundoplication and g-tube surgery and it went as expected.

In recovery, John had rapid labored breathing (not unusual for him) and attempted to pull out the new g-tube and tape off his incisions. Needless to say, he was fighting mad. So, he is now in arm restraints--no-nos.

He is resting now and we will try to feed him in a couple of hours. Guess we will see how that goes.

It's been a rough January/February in the family household. Sickness has struck more than once. John Andrew was scheduled to have the nissen fundoplication and mic-key surgery (to help with GERD) in January but came down with a virus, bronchiolitis and croup. So, obviously that was canceled at that time, rescheduled for February 14. Really hoping his is well enough and it won't have to be rescheduled again.

The nissen fundoplication surgery is where the upper curve of the stomach is wrapped around the esophagus and sewn into place so that the lower portion of the esophagus passes through a small tunnel of stomach muscle. This surgery strengthens the valve between the esophagus and stomach which stops acid from backing up into the esophagus. This allows his esophagus to heal. It will also be very unlikely that he will vomit again for the rest of his life. This is a permanent procedure and cannot be reversed.

I have really had a hard time accepting he needs this surgery. Lots of praying, talking and second, third, fourth, fifth and sixth (second opinions) from specialist. All say he could benefit. It has a pretty long recovery period and he will also have a feeding tube or mic-key placed in his stomach. We will have to learn how to feed him using the mic-key and relieve his stomach contents through this tube. Not sure how that will go yet but it should only have to be used about 3-4 months. I have been told it won't be as bad as I think. This will be new for us. In the past, when he has needed help with feeding, the tube was placed through his nose and into his tummy.

I had no idea what GERD/acid reflux could do to a person. For John, it effects his breathing, sleep and heart. John has severe sleep apnea and heart disease. A sleep study showed he would stop breathing more than 10 times every hour for up to 20 seconds each time. Many nights Jeff and I are up shaking him and telling him to breathe. In July, John had a T&A and tubes to try and correct his sleep apnea. He almost died from this surgery. He aspirated due to not being able to cough up phlegm which caused pneumonia. He was placed on a breathing machine and in the ICU at Vanderbilt's Children Hospital. He was at Vandy for two weeks before he improved enough to come home. Thinking this would be the cure for his sleep apnea, I was excited but later proven wrong. It helped with his sats and O2 requirement but not the apnea. A follow-up sleep study showed his OSA was only slightly improved and more testing or surgery would be necessary. A bronchoscope, exploratory surgery, ph Probe and trip to the CADET clinic at Vandy shows he could benefit from the nissen and so here we go. The doctors feel now the GERD is causing him to stop breathing at night.

In January, he developed seizure like activity. This is not uncommon for children with DS. I was able to film his spells, which include his eyes rolling back, body stiffening and falling forward. The neurologist on call said it looked like a series of seizures but the EEG did not show he was having any seizures at this time. Once again we were told it could be GERD and not necessarily seizures. We see a neurologist on Tuesday, Feb. 7 to follow up.

John Andrew sleeps hooked up to monitors. I am able to monitor his oxygen saturations and heart rate carefully. I watch these numbers multiple times every night. His heart rate has never been a problem but this past month his resting heart rate is dropping into the 40s. We went in for an EKG and echocardiogram which we do every few months to follow his Atriel Septal Defect (holes in his heart). Like every echocardiogram, his holes in his heart are not closing and this time his tricuspid regurgitation and pulmonary pressure are worse than ever before. The pulmonary pressure has never been a problem. This can cause permanent damage to his heart if no intervention is done. His cardiologist said it is likely caused from his sleep apnea and something must be done. Again, recommendation for the nissen to correct the GERD, which should help the apnea, which should help his heart/pulmonary pressure. He is still facing heart surgery later this year.

All of this goes back to reflux. Who would think something as simple as acid reflux could impact so many parts of the body? They cannot tell me for certain that this will correct the apnea but it should. If this does not work, the next step may be to remove part of the palate in the back of his mouth and open up his throat to see if that will allow him to breathe better at night. Ughh, the thought of that makes me feel sick.

He is ONE TOUGH COOKIE! Tougher than most people I know.

Enough medical stuff. I know God will be there on Feb. 14th just as He has been on the other 14 hospital stays my little guy has endured. John is so much stronger than his mommy. I am asking for all my prayer warriors to start praying now. Pray for John to have a speedy recovery with NO complications. Pray for his brother and sister that they will understand why their mommy is gone again and not at home with them. Pray for my husband that he will be able to go back and forth from the hospital safely to help with my children. Pray for me, that I can juggle my career, family responsibilities and take care of John Andrew as he needs.

I will continue to post updates and pictures as we more forward.

Miracles Still Happen

Without a doubt this will be the most emotional and hardest thing I have ever written. I don't usually write anything, but I decided today would be as good as any day to begin! Why today? As I sat in church this morning, I heard God speaking to me LOUD and clear. Today's sermon was on abortion and the importance of EVERY life God created both those with and without disabilities. As Brother Mark ended, he asked the question. Are you up for the challenge? How would you respond if you were put into a situation to make this choice? Well, I have been there and had to make that choice. To abort and no one know about it or not to abort and have a child that will change my families world forever?

I am not sharing my story with you for any one of you to feel sorry for me. I want you to know I am blessed beyond what I deserve. Looking back I would not change one thing that has happened to me in the last 12 years, even the things I thought would kill me. I KNOW God has allowed my life to be the way it is so that I can share the miracles he has performed in my family. YES, Miracles still happen today. I have witnessed one first hand and it is amazing.

My darkest days have become the most rewarding time in my life. I owe this to God! I want to witness how much God loves us and really is in control. I found myself over the past years having a hard time giving it all to God and having faith because I knew He would be in total control—not me and I may not like what he had in store for my life.

I am going to share with you a journey that changed who I am, what I feel life is about and my family’s lives. I am no different than any of you, most likely I am weaker, more fearful and pessimistic but I am learning each day how important it is to have FAITH and love for our creator. I knew that one day I'd want to talk about my journey to start a family, and it's not the easiest thing that I've ever done. Today, I'm opening up a part of my heart to my friends and family that I've kept closed too long.

It would be selfish of me to not share my experience with others who may be hurting, and offer hope that there are better days and miracles still happen even today. We use the statement "I am so blessed" very loosely. Why wouldn't I feel blessed? I am blessed with children here on earth, and I'm blessed to have children in Heaven. I feel very thankful to be a mother and to hold little ones in my arms, because at one time in my life, I didn't know if I'd ever be given that opportunity.

Twelve years ago began my journey to become a mother. Jeff and I experienced 2 losses before we were given our sweet daughter Jordan. After knowing how wonderful motherhood was we decided to extend our family one more time. This wasn't as easy as we had hoped. Once again our lives were filled with grief and disappointment. I had three more miscarriages. It seemed as though Jordan would never have a brother or sister. We then thought God had another plan and that was to adopt. We were so excited. We began and completed the adoption process through Kentucky Baptist Homes for Children. It was finally going to happen, we would get another child. Little did I know I was expecting again and this time we would be given a healthy baby boy named Jonah. Our family was complete. God had given us both a daughter and son. It couldn't be any better.

God had more in mind for our family and the journey of our lifetime was about to being. In March of 2009 I learned I was expecting again. I had mixed feelings about this and knew it was unlikely I would carry this child. I immediately contacted my doctor and that is when the most challenging years of my life began.

As I sat alone waiting for my ultrasound results, I felt something was not quite right. I couldn't put my finger on it, though. Every doctor's visit up to ten weeks had been normal for me but it seemed as though this time it would be plagued with problems. After waiting for what seemed like hours my doctor finally arrived in the exam room. My heart pounding and trying not to cry I could see the look of concern my doctors eyes. I had seen this doctor many times before and he had never entered the room so quietly before. I could tell this was news he did not look forward to giving anyone. I will never forget him saying "It looks like your baby has a chromosome defect, would you consider termination?" What? Termination? Chromosome defect? I didn't know what to say and fighting my tears. I couldn't even comprehend what was being said and to be asked a question about termination, a D&C? Was I suppose to answer "yes" and make another appointment for the abortion? Dr. B referred me to Maternal Fetal Medicine who specialize in high risk/fetal defect pregnancies. I went the following day to hear the exact same thing I had heard the day before. Yes, it is very likely my baby has Trisomy 13, 18 or 21. They were making the assumption from his Nuchal Fold measurement which was well above average. This is extra skin located on the neck of the baby. The only way to know for sure was to do the CVS testing. Personally, I did not want the testing but my family felt it would be best. So, I was ready as I could be just to get it over. I was prepared for the test (as much as I could have been) but when the doctor began the test she realized it was too risky for my health and for the baby. So, we chose to wait until I could have an amnio. This meant I would be waiting almost 2 months wondering what was wrong with my baby. I was seen weekly and told every visit something that would be wrong and that if I didn't chose to terminate his quality of life would not be good. The staff at MFM offered abortion to me every week. I told them repeatedly this was not an option. One nurse told me that no one would ever know I made that choice. She went into detail how I could abort and the entire story I could tell everyone. I was a wreck the day I left the doctor's visit. At another visit, when I was about 26 weeks, I overheard the nurse telling my husband (while I was in the restroom) about a doctor in Atlanta that would still perform the abortion for us if I changed my mind. Thank goodness I heard Jeff say..."She has already told you all, this is NOT AN OPTION!"

At ultrasound visits in my first/second/third trimester we were told his nuchal fold was several times greater than normal, he had chord plexus cyst on his brain, club foot, missing nasal bone, missing bones in both 5th digit fingers on both hands, poly hydramnios (excess fluid) which would mean he would not be able to digest his food normally, fluid around his lungs, likely a heart defect and his arms and legs measure more than one month behind the measurement of his body. Basically, he was a monster and we would be WRONG to allow a child like this to be born into this world. Despite all of the negative information, Jeff and I decided against any invasive testing, including the amnio I had been waiting for, in part because of my risk of miscarriage and blood clotting. But most of all because it did not matter to me what defects he would have because I would love him unconditionally regardless. Avoiding testing also let us live with the illusion that all the frightening prenatal predictions could be wrong. It gave us hope. I read daily the scripture Phil 4:4 - Be anxious for nothing

4 Rejoice in the Lord always. Again I will say, rejoice! 5 Let your gentleness be known to all men. The Lord is at hand. 6 Be anxious for nothing, but in everything by prayer and supplication, with thanksgiving, let your requests be made known to God; I let my request be known to God repeating this over and over and over and over......

I was struggling with the fact I needed to give it ALL to God. I was so scared of what that might mean and I had already grown to love this baby even if he would be a deformed monster with "no quality of life". He was still my child and not theirs!

At 27 weeks I was admitted into the hospital. My placenta (the organ that nourishes the baby) was restricted. It was not giving the baby the nourishment he needed nor the blood flow he needed to survive. The ultrasounds were showing he wasn't growing and was measuring a more than a month behind. They were now telling us he would likely be stillborn. All this and NOW STILLBORN??? Okay, God...I am strong but I really don't think I can take much more. At this point I had already had 38 ultrasounds and felt like I knew every detail my child had and I loved every single one. I began steroid shots and remained on hospital bedrest until he was born at 34 weeks. He was born emergency c-section on October 20. I was so terrified. This was no doubt the scariest day in my life. The doctors had prepared us for the MONSTER and now I was told he would likely not be breathing and I would not be allowed to see him. He might not live. He was 6 weeks premature and born screaming! GOD IS WONDERFUL!!!!

As suspected, the baby was showing strong markers for Down Syndrome. His cute little slanted eyes and perfectly shaped face were not anything like a monster I was prepared to see. I knew the moment I saw his sweet face he had Trisomy 21 and NOT Trisomy 18. I had such mixed emotions. I was thankful he was alive, thankful he didn't have Trisomy 18 but I cannot lie, I was disappointed the doctors were not 100% wrong. For a moment, I expected a miracle, a baby that was in our world perfect! Well, little did I know at that moment, I was given BETTER THAN PERFECT! The test were conducted and I would have to wait a couple of days for the official results.

I will never forget the day I would be faced with the absolute truth. The fate of my child, my life, my family's life. As I sat alone, pumping milk for my new born son, in a dark hospital room, with my back turned to the doctor who had just entered the room, I heard the him utter the words “as we knew he has Trisomy 21/ Down Syndrome, this just confirms it”. Then he turned and walked away. No support, just me alone in the dark hospital room while my baby with Down Syndrome was down the long hallway. My husband miles away with my other children and my friends a phone call away. I really wanted to be ALONE to grieve. Many thoughts went through my head. I felt myself grieving for the child I wanted him to be. Although I felt prepared to hear this, this made it real. My son has been diagnosed with Down Syndrome for sure. What would life be like for us from this point on?

When he was born he spent only 3 weeks in the NICU. His main concern was learning to feed, hold his own temp, jaundice and gaining weight.

He has been hospitalized several times for things such as bronchiolitis, multiple pneumonias, GERD, enlarged heart/liver, tonsillectomy, tubes in both ears, adenoids removed, possible seizures, aspirations and is facing heart surgery and nissen fundoplaction and mic-key surgery within a few weeks.

This is why I have chosen to blog! I want to share the journey of John and I want to remember in every way God has been there for us. I want to begin documenting all of his challenges so that he can teach me what it is like to be strong, to hold your head up high, to love everyone even on days we don't feel our best. He is my hero, my teacher and my MIRACLE!