Thursday, July 06, 2006

Suzy Cassel-Yanez share's Tanner's story which can also be viewed on his website at www.tannerlaughs.net

When I had Tanner my husband and I were so relieved that my very complicated pregnancy was over, we had no idea that our real roller coaster ride was just beginning... My pregnancy was very easy on me, however I do think that I just "knew" something was wrong. First of all I did not know I was pregnant until I was 11 weeks pregnant. I had a lot of bleeding, and still had a period until around 14 weeks pregnant. I took the AFP test, and it came back too high, suggesting Spina Bifida, or I was further along than expected, or twins. I had already had 3 ultrasounds by then so I knew there was no possibility of twins, or that I may be further along....


I remember freaking, I mean I was terrified! I had the amnio done, and during that terribly long wait we decided that no matter what, this was our baby, and deserved a chance. I also decided that be it a boy or a girl, this child’s middle name would be biblical.

The genetic amnio showed all the genes were normal. And the most wonderful news, we were finally having a boy. We were ecstatic!!! But things were still just not right. I still spotted blood often, had terrible migraines, gained little weight, and this baby rarely moved. Sometimes I would go all day with no movement. Because of the high AFP I was monitored by a "specialist" had stress tests and ultrasounds 2X a week. Never in all of these appointments was anything noted, except the baby had Intra uterine growth retardation. We picked a name, Tanner Mathew. I loved the name Tanner, and Mathew means, "Gift of God" we had picked his name with what was in our hearts, and let me tell you that little boy has been the greatest gift from God I could have ever imagined.

I had Tanner C-section because I had broken my back 18 months before his birth, (An accident in Glamis) and the Dr. was not comfortable with my laboring and pushing, that Dr. and his decision was the beginning of a chain of events that have given me a strong faith in God, because God worked thru so many people in Tanners life. Interestingly, Tanners birthday is also our wedding anniversary! (Dec 18th) Tanner was born 5 lbs 8 ozs with a double knot in his cord, not around his neck mind you, but 2 TRUE KNOTS. The OB had never seen a double knot before and was stunned. Had Tanner grown to a 7-9 lb baby that knot would have tightened and killed him. Also labor and pushing would have done the same. Tanner was screaming before he was completely born, and had an APGAR of 8 and 9. It was noted that he had a positional club foot. I remember looking at that foot with the ugly title "club foot" and thinking, "it looks like a foot, not a club!" Tanner also had a "sacral simple" on his lower back. What that means is that it is suggested that he came very close to having an opening in his back, (Spina Bifida) and for some unknown reason it closed. That also explains the high AFP. He does not have occult Spina Bifida, or any complications from that dimple.

Tanner roomed with me, within hours of his birth I remember a funny grunting sound he was making, and he seemed to be breathing strange. I called the nurses several times, it was noted in the chart his breathing was a bit on the fast side, but would go back to a slower rate when sleeping. He did not want to eat, and seemed agitated easily. The 3rd night in the hospital he slept thru the night, I thought he was such a good baby! The next morning before we were to be discharged he went for a routine assessment, and never returned. This is where my life changed, and so did I. Everything changed. Our baby was in the NICU breathing over 120 breaths per minute, and he was covered in tubes wires, goggles over his eyes, fighting for his life. How desperately I wanted to fight for this tiny little helpless baby, I had to surrender, trust the NICU staff, and soon realized that everything was out of my control. What I wanted to do was pick up my baby and run, run away... I had my phone calls intercepted, friends and family knew something was wrong, but I was focused on Tanner, and simply couldn’t deal with anyone but Tanner, I couldn’t even talk to my husband without getting upset.

On Christmas Eve 2000 at 10:00 PM the on call cardiologist approached us with the results of an echo that had been performed. I will forget a lot of things in my life but I will never forget every single thing about that moment. I remember the look on his face, his eyes, the fact that EJ and I had been arguing over Grandparents wanting to visit the NICU...(I was adamant that I wanted no one but he and I there) I remember Ej was sitting across the incubator from me, and I remember when the cardiologist told us how serious Tanners heart defects were, I leaned over the incubator weeping, feeling like I could not breathe, could no to handle this, I felt like I was falling. The next thing I remember was Ej was there beside me; whispering for me to pull it together or they might make me leave. And I did pull it together, somehow.

THE DIAGNOSIS: Tanner had at least one large muscular VSD, a PDA, and a PFO. Dr. Leonard Bailey at Loma Linda Children’s Hospital would be his surgeon. He had already been informed of Tanner and his condition. The problem was that Tanner was too small for surgery. He needed to grow, but it needed to be carefully monitored because his heart, pulmonary artery, and lungs if overworked too much, well the damage could be so severe that open heart surgery would not help him. I remember my husband asking if there was any way the VSD's could close on their own, the cardiologist looked at us with anguish and said it would require a miracle, but he believed in miracles. He told us to pray. And pray we did. The next morning was Christmas, and we opened presents with our daughters, numb, and in complete shock...That afternoon we had the Grandparents come over and told them what we knew. We asked them to please explain it to the rest of the family, and to please respect our privacy, we were trying to absorb everything, and all the emotions that seemed out of control. I went thru the typical, "what did I do wrong?" questions and God Bless the Drs. for reading my mind and assuring me it was not my fault, that it was the most common birth defect, etc... The funny part was that it is the most common birth defect, Heck I live 5 minutes from Loma Linda International Heart Institute, Dr. Bailey did the first infant heart transplant and Baby Fae with the baboon heart, yet I never thought about it! And I never knew one single person who had a baby with heart problems. And I will tell you something else; I never ever would have imagined that I would have a baby born with a broken heart. Tanner was now just under 5 lbs. And I wanted to breastfeed. I was determined. However Tanner was just too weak. So I pumped, 10-12 times a day. He was taken off the IV nutrition, gavaged, and slowly weaned to a bottle. Digoxin, lasix, and Aldactone prescribed. At 2 weeks old we took him home. It was terrifying. Tanner just breathed real hard, and existed. He never made eye contact, and milestones were not even a part of our lives. Those months before surgery were in a nutshell, pure hell. I got to a point where I could not imagine, couldn’t even remember, what it felt like to not be scared all the time. Tanner was in heart failure the entire time, had every classic symptom, and all we could do was watch, pray, and stare at the baby scale 3 times a week in hopes he would grow. Tanner’s cardiologist, Dr. Marilao seriously discussed PA banding to buy Tanner some time before open heart surgery, and suddenly Tanner gained some weight! It was the first time we had had good news in weeks. As Tanner grew, his symptoms worsened. He sweat terribly, vomited profusely, liver swelling occurred, blue hands, and lips, and breathing was at best 75-85 breaths per minute. Finally at 2 1/2 months old we knew it was life or death again. I remember Ej and I packed a bag for us and the baby, and my breast pump because we knew the Dr. was going to admit him. He was grunting when he breathed, over 100 breaths per minute, and blue.

I cannot forget the time Tanner turned blue and I was on the freeway where Ej met me and jumped in the car, or the fact that his club foot could not be treated (typically they cast a club foot to stretch it back out) Tanner was so swollen they were afraid it could cut off circulation. Or the callous people who treated Tanner and referred to him as "the cardiac baby" or the idiots who would try to draw blood for digoxin levels and tried to tell me that he was not crying because it hurt but because we were holding him down...DUH!!! Needles stuck in your arms digging around DO HURT!!! One of my most painful memories was the EKG that was performed when he was hospitalized at 2 1/2 months old. None of the leads would stick because he was sweating so bad, he was SCREAMING, I was crying, it took 4 people to do it, and Tanner got so out of breath he could cry no more, he laid there, miserable, tears still flowing, making no sounds, but trying to catch his breath. That was the worst. Afterwards I was holding Tanner, crying, and kept saying over and over, "I hate this". Nor will I ever forget the kindness of others. The compassionate nurses, Marion I will never forget all you did! My best friend, who cried with me, was strong for me, and always there for me, I love you Lauren! The Drs. who not only listened to me, but respected me. The prayers said around the world. Nor will I ever forget that I believe God carried me thru it and gave me strength I would have never thought possible for me.


THE SURGERY On Weds April 4th Tanner underwent a cardiac catheterization. How simple it sounds! It was agonizing letting him go. My final words as the Dr. took him was, "Please, please be good to my baby." And they were. The catheterization showed a moderate VSD, (6-7 mm) and a PDA. However Tanners blood pressures were high. Hours after the cath I was approached by Dr. Baileys nurse, Rachel and told that it had been decided that Tanner needed surgery soon, within the next couple of weeks... It was a relief for me. I knew Tanner could not go much longer the way he was and the fear that he would go into cardiac arrest at any time was terrifying. Yet I was also in shock and agony. If letting my innocent baby go to a catheterization had been so awful, how could I possibly let him go into open heart surgery??? The answer is simple, yet brutal. I did not have a choice. If I did what I wanted which was to grab Tanner and RUN, he would die anyway. Basically I put it in those terms. Yes there was a risk he could die in surgery, but without the surgery he would die without a doubt. No parent should ever be forced to think like that. The strange part was that the cardiac cath weakened his tired heart. I do not write this to scare anyone, but I swear it’s true. He was already in heart failure when he had his cath, but when he came out of the cath, he went downhill FAST. He could not hold down even a CC of milk, was gaining more than 10 ozs a day in fluid, and during a miserable feed I looked down and saw his hands and mouth were blue. On Friday April 6th (2001) at 6:30 AM I called Rachel (Dr. Baileys nurse) and begged her to see Tanner. I told her his symptoms and told her that I was truly afraid he would die before the weekend was over. She never hesitated and told me to bring Tanner to the Heart Institute immediately. When we got to the Heart Institute she took one look at Tanner and paged Dr. Bailey. He postponed a surgery and came to meet with us. When he saw Tanner he said it was time. He was postponing his Monday surgeries and Tanner was having his open heart surgery. Upon hearing that I put my head down and silently began crying. I looked at Dr. Bailey and said: "I am just so scared." Dr. Bailey took my hand and said, "I know, and I am going to make it better." And he did. That weekend was pure Hell. Tanner was down to being fed about an ounce an hour, and to get an ounce down took a good 40 minutes. Add to that the picture taking, "what if its our last pictures?" baths where I looked at his unscarred chest and wept, and knowing that he would require blood, and we did not have enough time to give it. On Monday April 9th 2001 I did the hardest thing I have ever done. I handed my innocent little baby over to a team of strangers in the hopes that they would save his life. Tanner was 3 1/2 months old. There is simply no way to explain what that feels like. As soon as I handed him over my arms ached to hold him again. My heart literally hurt. I imagined him on that surgical table surrounded by strangers, afraid. (I actually forced myself to visualize Tanner seeing angels among the strangers, and as unbelievable as it sounds, it brought me comfort.) I realized a new pain as a parent; I would have given him my heart, gladly taken his place to protect him. I was forced to trust these strangers that they would help my baby when I could not. The hours Tanner was in surgery were strange. I felt like I was underwater, in a dream. I also had a strange sense of peace come over me from time to time. I begged God to allow my baby a chance. I begged God to give me strength because I felt I was going to buckle. All I can say is the day of Tanners surgery changed my life...Taught me a compassion I never knew, and showed me that I have strength I never imagined possible. I also vowed that day to never forget. To make something good out of this. I am still actively pursuing this. Almost 6 hours after handing Tanner to Dr. Baileys incredibly skilled and caring hands, we were paged. I knew Tanner was alive because we were paged to the Pediatric Cardiothoracic Intensive Care Unit, not met by someone telling us the worst. We raced to the room Tanner was in. What I saw was that Tanner was alive. I did not see the ventilator, all the lines in him, all the equipment. I saw he was alive. I saw that his lips were so red! That actually scared me and the nurse told me, "That's what his lips SHOULD look like!" My husband Ej saw what I didn't, the wires, lines, blood drain, etc... and almost puked. Dr. Bailey looked at us smiling and said, "Well the baby is going to be fine, I am concerned about his parents though!" Then he explained that Tanners carotid artery had been nicked in surgery, (made him require even more blood) and the shocking news that his ventricular septal defect had been double the size the cardiac cath showed. He had had a 12mm by 10 mm VSD. He also had a Patent ductus arteriosus, and a Patent foramen Ovale. (PDA and PFO) Neither had been seen in the cath. Tanner was so much sicker than any of us knew, although in retrospect I think Dr. Bailey and his team suspected it. A year later I read Tanners surgical report and read that Tanners heart had been stopped for 13 minutes, his body had been cooled, and his head put in ice. (I strongly suggest waiting a while to read the surgical report if you are a heart parent and your child recently had open heart surgery, because it is ALOT to read.)

RECOVERY AND COMPLICATIONS Over the next few days Tanner was slowly weaned of the vent, and oxygen. The lines slowly disappeared. He was on the mend! Except there were complications. This was terribly hard for me because I had spent months telling myself that all we needed to do was get him big enough for surgery. Once surgery was over I would have a "normal" baby. That was this biggest disappointment for me because I learned one of the reasons the Drs. do not like performing a huge surgery like open heart surgery on an infant is because of the post surgical complications. Tanner refused to take anything by mouth. I also think he had a post traumatic stress. He did not like to be touched. (This is called negative touch response and is quite common in babies who get poked and prodded due to health problems...these poor babies expect pain when touched and do not like to be held or even talked to.) He also developed failure to thrive. He was on that vent, and after the vent force fed milk, and medications that must taste nasty. Tanner began to control the one thing he could. He refused to allow anything in his mouth. I could touch his lips with my finger tip and he would gag profusely. This proved to be incredibly hard on all of us. We wanted to hold and nourish our baby; this is what parents find natural, and a pleasure. Tanner wanted no part of it. He found it miserable and torturous. Tanner wound up on a nasal gavage for nourishment, (a tube from nose to tummy) and we the lucky parents were trained on how to insert the tube, and feed him. It took months to get him off weaned off that NG tube and that was awful. The only way he would take a bottle was in the car in silence driving for at least an hour to get him to suck down 3-4 ozs of milk. Then we drove around more so that he would not vomit. I am truly surprised that no one called the police on us considering we drove the same city streets over and over day and night! It took a long time. Tanner weighed less than 15 lbs at a year old. And now at 3 he weighs about 33 lbs. He is small. But he does eat. He still has a hyper gag reflex, and a poor appetite. But again, he does eat and we don't have to jump in the car anymore to feed him!

SPEECH DELAYS Tanner has speech delays. This is NOT due to any type of brain damage. I learned that heart babies are at a high risk of speech delays due to the open heart surgery(s). The surgery that saved his life had complications! But he is in speech therapy, and actually knows sign language. Tanner definitely communicates! Tanner has a speech therapist that he sees 2X a week. He is expected to be "caught up" before he starts kindergarten.

LONG-TERM PROGNOSIS Tanner is expected to live a long healthy life. His cardiologist told me that he may one day die of heart disease, but it will not be related to the heart defects he was born with. It would be from acquired heart disease from his diet. Tanner is healthy, and happy. He is a joy and I am privileged to be his mother. He is a true definition of a miracle to me. How did I ever get to be lucky enough to be his mother? Where once I asked God, "WHY ME?" Now I thank God for choosing me. Tanner does wear a chest protector when he rides his quad, and when he has a fever over 101 F he takes antibiotics as a preventative measure. (he is at a risk of developing bacterial endocarditis an infection in the heart. this is because bacteria can stick to the scar tissue in his heart.") The preventative antibiotics are expected to be discontinued by the time he hits adolescence.

TANNERS FOOT Tanner was born with a " mild club foot." How I hate that title. His foot NEVER resembled a club. If you look at the inspirations page you will see a sepia tone picture of him as an infant. This shows his club foot clearly. Take a look. It did not look horrible! Just a little turned in. We learned that babies with heart defects commonly are born with club feet or club hands, due to compromised circulation in utero. The typical treatment of a club foot is casting shortly after birth. This stretches the foot back out to normal ranges. It is non invasive and painless. Unfortunately Tanner could not have his foot casted because he was so swollen due to heart failure. The initial Dr. who casted him 6 weeks after his heart surgery was not successful. When Tanner began walking he walked on the top of his 2 baby toes, and was developing a limp. This Dr. suggested surgery at the age of 10-12 years old. I posted about this and my frustrations to an on line parents of children with heart defects support group, and again I believe God worked thru a wonderful member, Elizabeth replied that there was a Dr. in the state she lived in, Dr. Ponsetti. He has a 100% success rate, and does NOT do surgery. At that point I decided Tanner would not have another surgery, I found Dr. Ponsetti's email, and contacted him. This 86 year old man replied the next day. He offered to treat Tanner, or refer Tanner to Dr. King who trained under Dr. Ponsetti. Dr. King practices about 3 hours away (one way) and we met with him. Dr. King agreed to contract with our insurance, (we were planning on getting a 2nd mortgage to pay for it) and told us that he felt confident that his non surgical conservative method would be successful. Then our insurance company declined us. I appealed several times, AND WON!!! The conservative method took several months of casting, (every week we drove out for a new cast to keep stretching it) orthopedic shoes, and a brace at night when he slept. The orthopedic shoes were recently discontinued, and he is in normal shoes. He has no limp. His foot is straight. The Ponsetti method was a complete success. If I asked you to pick which foot was "clubbed" at birth, I promise you would not be able to see it. I am so glad for Dr. Ponsetti, Dr. King, and of course, Elizabeth who helped me find these wonderful Drs. TANNER LAUGHS And what a beautiful sound it is. He is my heart. Those of you who are parents of children who are medical miracles understand this. Those of you who aren't, I hope you have a better understanding. Never pity a parent of a special needs kid. They are not to be pitied, but envied. Our hearts, while scarred, are full of love and appreciation that cannot be compared. I wouldn't change a thing. Not one thing. Except maybe I would go back to that poor woman being told her tiny infant sons diagnosis in that NICU, put my arm around her, and tell her she is in for one Hell of a roller coaster ride, but she WILL be o.k. The roller coaster has highs and lows, and may never really end, but she will be ok.

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