Wednesday, January 27, 2010

Tommy's Story~ Another Heart Surgery

Tommy was admitted to the PCICU. There had been talk about sending him home on oxygen if he could be weaned down to 35%, but he never did manage to get down that low. His sats hovered in the 60's while on 40% oxygen. He was lethargic and blue. I finally told his nurse I wasn't taking him home until a decision was made and a plan worked out. I stayed with him night and day, sitting beside him, talking to him, whatever I could to be close to him. I slept where ever I could find a reclining chair or on the couch during the day when the Ronald McDonald Room was open. Once, I tried to sleep on the floor of the chapel because there was nowhere else to go.

I lived barely 10 minutes away. I could have slept in my own bed every night, but I could not leave him! Every day, the doctors rounded and I watched Dr. Bradley (his surgeon) walk by us. I asked the nurse when he was going to decide what to do about Tommy. She said that Dr. Bradley does not make decisions lightly. He considers every possible outcome and will not just jump into it unless he was certain. She assured me he knew how sick Tommy was, and that he wasn't ignoring me. Our second day on the floor of the PCICU, Tommy was moved to a room instead of just a bed on the ward. He didn't leave the floor, or even the PCICU, just where he was sleeping. It meant I could watch tv, and have a bathroom instead of leaving the ward and coming back. After 4 days of only leaving his side when it was absolutely necessary, Dr. Bradley walked into our room on Thursday morning.

He said "Let's try the Glenn." I thought his lung pressures were too high, but he told me Tommy had been on medication for 4 days and there was the possibility that his pressures could have come down enough for the surgery to be successful. I had a lot of questions, but the big one was what happened if the surgery didn't work. The answer was easier than I thought. He could reverse the surgery if it wasn't working for Tommy's body. Really? I had no idea that was possible! So at 5 a.m. the next day, Tommy would be headed to the ER. And I would be alone again. I could not bear the thought!!!

I had become close with another mom in South Carolina who's daughter had the same surgeries as Tommy. She told me that day if I needed anything to call her. So I did. I told her I didn't want to be alone during his surgery. She made the arrangements and said she would be there. I was so grateful and I am to this day. She inspired me and gave me a reason to think everything would be fine with Tommy. She was a great friend that day.

The morning of Tommy's surgery, the nurse came to his room around 3 in the morning to start an IV so he would have immediate access once he was taken back to surgery. She gave him a medication called Versed. For the kids that Versed works for, it pretty much gets them "mellow". And when I say mellow, I mean Tommy was stoned! All week, he had been cranky, sleepy and just not himself. After the Versed, he began to look at us strangely. As the nurse inserted the IV, Tommy began to laugh hysterically. I will never forget that. I took pictures of the little giggle box as he was prepped for surgery.

After Tommy was taken back, my friend, Anne, arrived. She bought me breakfast. Had to remember to eat and take care of me. The hospital gave us a pager. Once an hour, it gave us an update. We could be anywhere in the hospital and get it. We were having lunch in the cafeteria when the nurse that was calling in the updates sat near us. She called the OR and got an update for us right there instead of making us wait for the next page. He was in such good hands. Through it all, we were told Tommy was having the Glenn. Once surgery was over and it was time for Dr. Bradley to talk to us, it had been a long day. About 5 hours. He told us Tommy did very well, but he was not able to do the Glenn. Once he was in, he tested the pressures in Tommy's lungs again and found them to be much higher than expected. Instead, he put in a bigger shunt like the one Tommy had done when he was a newborn.

Tommy's recovery was right on track after that. No big surprises, no infections. Our only drawback from the whole ordeal was that Tommy could not make it off of the oxygen. His lungs had been too damaged by his lung disease and later what we would learn to be pulmonary hypertension, asthma and reactive airway disease as well. Tommy came home on 35% oxygen. Our whole lifestyle had to change to accommodate the oxygen.

Tommy started sleeping in the living room because we had a limited amount of length that the tubing could be giving him oxygen from the concentrator. It was a big, heavy, noisy, hot machine and not easily moved. We found it easier to let him sleep in the living room instead of trying to move him and all of his equipment twice a day. I started sleeping on the living room couch because we did not have nursing and his airway had to stay clear. I woke up several times a night to adjust his feeds, and to suction his trach. Life at home became very different. Tommy was stable, but dependant on the oxygen and my constant eye.

We battled the flu twice over Thanksgiving, and that would start our monthly hospital stays. Once a month, every month, something needed to be addressed.

Monday, January 25, 2010

Tommy's Story~Therapy, Therapy, Therapy

Once Tommy was home and we had gotten into a routine, we started services for Early Intervention. Once you're in the system, it's fantastic, but actually applying for services was a chore. There's referrals, then an intake interview, then finally a team meeting where goals are stated and written out. It took about 6 weeks just to get therapy started.

We started out with an Early Interventionist that came out to the house to assess Tommy's needs and to see where he was developmentally. Because he was aversive to just about everything, plus a preemie and a very sick baby who had been in a hospital bed for a long time, our work was really cut out for us. We started with simple things. First up was joint compression and brushing. We would firmly rub a plastic surgical scrub brush over each of his limbs, then his back. Afterwards, we would compress and release all of his joints. Fingers, then wrists, elbows, shoulders. Hips, knees, ankles, toes. We started once or twice a day, then moved on according to what he would tolerate. We knew pretty quickly when he'd had enough. His hands would fly to his face and cover his eyes and he tried to look away.

Once Tommy started becoming comfortable with touch, we moved on to stimulation. Up until that point, at around 4 months old, Tommy hated to see any bright colors or movement. Our house had to remain as quiet as the hospital ward had been. Once we had conquered sights, we moved on to sounds and touch. Around this time, we also started physical therapy. Occupation therapy concentrated on his senses and small motor skills. Physical therapy would work on his muscles. At 4 months old, he would not tolerate any time on his tummy, roll, pull himself or sit. Simple things like reaching for a toy were major accomplishments for Tommy.

Through hard work, determination and encouragement, when Tommy was 5 months old, I was rewarded with his first smile. He learned to roll from side to side, but still hated anything on his tummy. He liked to touch only certain things. New things were met with hesitation. We all learned Tommy's cues. He would start by scratching the back of his head. That meant "I'm not so sure about this". Sometimes you could see the look in his eye that he'd had enough. As soon as the back of his hands went to his eyes, time was up.

Each muscle in his body had to be trained. He was too sick and weak to be a typical baby. There was no sitting at 6 months, no crawling, and certainly no standing. But the kid had an arm like you wouldn't believe! He could throw! At the end of his life, he would purposely throw things under the couch so he would not have to do therapy, then smile when he got the toy he wanted.

Everything was a therapy session. Tommy being held in a sling for 10 minutes was a goal. Holding a toy and passing it from hand to hand was a goal. Eye contact, touching new things, and finally, the day I had dreamed of since he was born.

Easter Sunday, Tommy was about 7 months old. I picked him up and cuddled him as I sat on the couch. He let me hold him. It was the first time since coming home that he had not arched and turned blue when I held him. I rocked him, he cuddled back with me. He loved me. He trusted me. He had finally bonded with me as his mommy. As we lay there snuggling, I wiped away my tears. Tommy had other ideas. He tucked his tiny head against my chest and fell asleep in my arms for the first time in his life. After that, there was no going back. I cuddled him every chance I got.

When Tommy was around 8 months old, we knew it was getting close to doing another heart surgery. His sats were slowly dropping into the 70's. It was summer and I wanted to take him to Kentucky to meet family for the first time. Up until then, only my mother in law had the means to travel to see us. It was a delicate arrangement. We had to plan for his medical devices to be shipped, plan for the extra supplies we would need and clear it with his team of doctors. He was not on oxygen at the time, but we still had to take a tank, just in case. Our van was packed to the gills.

It was a wonderful trip. We had two family reunions, one from each side. I will always be grateful we were able to make that trip happen. It would be the only time our families would see him. When we came back, we knew it was time for his first heart cath and hopefully, the second stage of Tommy's surgery, called the Glenn. Therapy was paying off. The night before the procedure, Tommy was finally able to lift his legs off the ground and put his feet in his mouth. He was 9 months old, 7 months corrected age (the age he actually was if he had been born full term).

The morning of the heart cath came. We took him to the day surgery room and they started the typical things for a procedure. Temperature, blood pressure, pulse ox. Tommy's oxygen saturation levels were very low. Mid 60's, and he was very blue. I was told pending the outcome of the cath, to be prepared for heart surgery very, very soon. Within two weeks, if not sooner. It was time.

Tommy was taken back for his procedure and fortunately a room was open on the step down unit right away. I was able to wait in his room and watch tv while I waited. The nurses kept me updated. Our first bit of trouble was when I learned that Tommy heart was a bit more tricky than anticipated. He needed to be sedated. Another update, Tommy needed paralytics so that the doctor could move around his heart and not damage it. Depending how long it took to come out from under the medications would determine if he went to recovery then to his room or straight to the PCICU. I was told the doctor that did the heart cath would come to speak to me.

Dr. Bandisode walked into the room. She got straight to the point. Tommy would not be having the Glenn procedure. She started saying things like chronic lung disease, lung pressures, wait and see. I felt so cold and started shaking. If I had been told that morning that Tommy needed this surgery within two weeks, and now I was being told he couldn't have it, what was going to happen? She suggested we take him home and wait a couple of months. And what? Wake up one day to find him gone?

Rob picked me up and I told him everything. Our son had just been given a death sentence. We cried as we drove down the road, holding hands, preparing for the worst.

Sunday, January 24, 2010

Pausing Tommy's story for prayers

i want to take a moment to ask for prayers for the wilson family. they have just lost their son, josiah. josiah was hlhs and was recently trached. their blog is

Tommy's Story~ Recovery

Tommy's recovery after his first heart surgery was far from easy. We didn't know what to expect or how long he would be in the hospital. He was just so little and fragile. Days turned into weeks. Around 3 weeks after the surgery, things got bad. First, one lung collapsed, then the other filled with fluid. He also developed an infection in his blood stream. This was all in one day. I took the first pictures of him since his before his surgery because I was afraid I would never get to take another one. He was really sick.

They turned him, sat him up, and put him in several different positions so that his lungs would drain. He got chest percussion therapy (CPT) several times a day. I learned how to do it as well. He was still on a ventilator. Finally, his lungs cleared up enough that we tried to take out the breathing tube. He lasted a few hours and went into respiratory distress and had to be intubated again. It was upsetting, but not unexpected. His swallow was making saliva pool and gag him, causing him to not be able to breathe on his own.

A few more days went by and Tommy got a little stronger, so extubation was tried again. He made it a few more hours and I was actually able to get a few pictures. Unfortunately, that time without the vent was short lived as well. The third time we all knew that the only way to get him breathing alone was a tracheostomy, but there were other things that needed to be gotten out of the way first.

Tommy was given a Nissen Fundoplication. His feeding tube site had to be moved up because his stomach had shifted with the Nissen. Since he was so little, they could not do it laparoscopically. He already had his fresh scar all the way down his chest, now it extended all the way down his stomach and around his belly button, with smaller scars on either side from where his Gtube used to be, plus chest tubes from the heart surgery. My poor baby.

Tommy was just over 2 months old at this time. Thanksgiving marked 2 months, and it was now early December. Everyone was pushing for a trach, until someone let slip to me that Tommy should have an MRI to rule out a reason he wasn't swallowing or breathing on his own. This was my first time venturing into territory where the doctors figured out I was not just another mom being told what to do. I came home and began researching what I knew about Tommy and why an MRI would be necessary. I found the term Arnold Chiari Malformation type 2. This is also the time the doctors learned not to send a resident in my direction.

A couple days before Tommy was to have his trach done, I began to inquire about the MRI. Everyone agreed it should be done, so I was upset when they scheduled the trach surgery, but not the MRI. Tommy's nurse called a resident who fumbled over what was happening and I made him call the attending neurologist at home. I asked him why Tommy wasn't having an MRI to rule out ACM before they did the trach in case he needed a decompression. Silence. Then finally, "Just who exactly told you we were looking for ACM?" I told him, "Nobody, I figured it out myself, but that is why he's having the MRI, correct?" More stunned silence, followed by "Yes." He said he would call ENT to straighted it out. I could hear the gears turning in his head over the phone, wondering how I figured it all out, and on top of that, correct.

An hour or so later, I got a very agitated call from Tommy's surgeon. He explained to me that in order to have an MRI that Tommy could not have any lines in his heart. He also explained those lines were causing Tommy to get another serious infection and they had to come out immediately, but in order to take them out, Tommy had to be able to breathe on his own. A trach had to happen no matter what, so I consented. I think he (and every other one of Tommy's doctors) realized that I knew my stuff and I wasn't letting them run the show. I was a very informed mom who could stand toe to toe with them. They knew from that point to stop sugar coating it and give it to me straight. Tommy got his trach and his MRI a few days later. It was negative for ACM.

Once Tommy got his trach, the fun began. Really, no sarcasm intended. I had not held my sweet baby since the day before his heart surgery two months before. The day he got his trach, I rushed to the hospital and the nurse placed him in my arms. I held him for about 2 hours. I held him until my arms were numb, then just kept holding him. I was in Heaven. His lines came out the next day and the infections stopped. Rob held him for the very first time.

We started rooming in with him to learn all of his new care. We had to learn not only to feed him with his pump, but to dose out and correctly give all of his medications, how to care for his trach, learn to clean it, change it out, suction it, change the ties, what to look for, oxygen requirements, humidity settings, etc, etc, etc. Oh, and how to change dressings, assess his color and demeanor so we knew how his oxygen saturations were doing without the aid of machines. Then there was the regular old baby stuff on top of it. Except my baby was silent. His body shook and he turned purple as his face contorted but he didn't make a sound. He would need me to keep a visual eye on him 24 hours a day to be sure not only was his oxygen okay, but that he was breathing and his airway was clear. He had no way to communicate with me. A baby has certain cries that their mother learns. I didn't have that advantage.

A few days before he was to come home, we had him circumcised. To add to our already complicated plethora of medical chaos, the procedure went wrong. I should say, the procedure itself went fine, it was afterwards that went wrong. We had been rooming in with him in the PCICU and we finally had gotten a private room on the step down floor. He had the procedure that afternoon and that evening we moved. As his nurse picked him up to move him from crib to crib, we found the bedding soaked in blood. His circumcision was bleeding out. We called the surgical on call to come check it. He was "fine", but he had developed a hematoma (blood clot) and it was bleeding because he was on blood thinners for his heart. She had to apply pressure to stop the bleeding. After about 45 minutes in finally stopped. We had to keep his little boy parts wrapped in Vaseline coated gauze to keep it from getting irritated and bleeding again. It took a week to heal and Tommy developed a unique talent for peeing out of the right side of his diaper. I would find him soaked only to change him and find a dry diaper. Its the little things that are funny now.

Finally, on December 13, 2008, after 79 days in the hospital, our little hero made it home for the first time. It was the most amazing, scary, happy, emotional time. I immediatly put his car seat under the Christmas tree and took his picture. He was my gift. The second day home, his apnea monitor went off. The alarm scared him awake and it corrected itself. I don't think I recovered so easily. Tommy slept in a bassinet next to our bed hooked up to humidity for his trach and his feeding pump. I learned to "hear" him and learn what he wanted and was able to wake up at night. He was hooked to an apnea monitor as well. During the day, we moved him to a bassinet in the living room. His feeding pump was portable and he didn't need the humidifier, so we had the freedom to move all through the house. Not that we did. It was all very overwhelming.

We soon fell into a routine, but something was off. Tommy would not let me hold him. He turned blue and arched his back when I held him. I knew something wasn't right. He had started it before we left the hospital. I showed everyone. I was told everything from "he's not used to the trach" to "he's just wiggly". After going through respiratory, cardiology, and ENT I took him to the pediatrician and told him what was happening. More hemming and hawing, so I picked Tommy up and put him in his arms. Tommy arched and turned blue. The pediatrician turned white as a ghost and handed him back. An hour later, I had a referral in my hand for occupational therapy. Tommy was diagnosed with Sensory Integration Disorder. In a nutshell, he had not had enough human touch in the first few weeks of life because he was in a hospital bed on a ventilator and we couldn't hold him. He learned to self soothe. He also learned that if he was touched, it usually hurt. We had to retrain his senses that touch was good.

So begins our journey at home with occupational therapy, physical therapy and early intervention.

Friday, January 22, 2010

Tommy's Story~His Heart

On the morning of October 20, 2008, Tommy was one month old. I called the Cardiac step down to talk to his nurse about him to see how he did through the night and how he was feeling, since he'd had the botox and was in a new place. She told me he was a little fussy and she had him in the nurse's station in a swing. Awwww! His first time in a swing! I was more sad I was missing him be fussy than being in the swing. He was a quiet baby and I think I had only heard him cry once or twice since he was born.

The afternoon went on and the phone rang. Tommy's nurse said that his sats weren't that great so they were going to give him a little morphine to start an IV. She made it sound like everything was okay, he just needed a little fluids. Being a new heart mom, I didn't really know what to expect or what was actually happening. The phone rang again a short time later. Again, it was the nurse. Tommy had an adverse reaction and his breathing became very shallow and they were giving him medications to reverse the morphine. She said to expect his heart surgery sooner than later and that Dr. Bradley wanted to speak to me about it.

It would be about a year later while Tommy was admitted for one of his many stays that we would have the same nurse. She would tell me what she couldn't tell me that night. Tommy had crashed and they almost lost him. It was much, much worse that I had ever been led to believe.

Dr. Bradley got on the phone and we talked for about 10 minutes about what was happening with Tommy. We discussed how the surgery worked and how he would be doing it. Lots of chit chat on my part. Just being an informed mommy. He asked me for consent, which I gave. Cool, just getting it all in order. I asked him what day he was doing surgery. He said "We start at 6". I looked at my clock. It was 5:20!!!! I hung up, numb. I called Rob. No answer. I called my best friend. Her phone was messing up and she couldn't hear me. I was shaking all over and ready to cry.

Rob worked for a company that installs fire alarms. They worked in the field all day long and the office closed at 4. I said a silent prayer and dialed the office anyway. I let it ring and ring and ring. Finally, somebody answered. Through tears I tried to explain who I was. I told them Rob wasn't answering his phone and our son was about to go in for emergency heart surgery. I told them he was with John. Turns out there were several Johns working there. I narrowed it down by describing what I knew about John and they figured it out from there. I could hear the man I was talking to start speaking to someone in the background. They managed to find John's cell number and call him. Through the four of us, Rob got the message to come home. Now.

They had been about 30 minutes out of town on the side of the road with a flat tire. When Rob got on the ground to change it, he had bumped his phone and caused the sim chip to come loose. Once he had it fixed, he called me and I told him what was happening. I would later find out all they had told him on the phone was to go home and take off as much time as he needed. That was all. I made it to the hospital around 6:30. I never got to see Tommy, he was already in surgery. Rob took the kids to my friend's house and she was supposed to meet me at the hospital, but her husband was running late getting home with their car, so everyone was just stuck where they were.

I went to the PCICU and was taken to their waiting room. It was after hours so Guest services had left. I was instructed that all updates would come to the phone in that room, and was left completely alone. Completely Alone. No support. Nobody. Just a few magazines and my thoughts. My son was having open heart surgery, I didn't know what was happening, Rob was taking care of our kids, my friend was waiting for her car and I was in that room where the quiet was so loud it hurt my head.

I remember getting a couple of updates, but don't remember much. I was in shock. Around 8, my friend finally made it. She had brought food with her. I had forgotten I hadn't even eaten since early that morning. I was about to make dinner when the phone had rang at home. There were signs all over the room stating "no eating", so the food sat. Finally around 9, we got an update that he was doing well, so I took the chance to tell the nurse on the phone that we would be going to the cafeteria to eat for about 30 minutes so we wouldn't miss any more updates.

We went to eat and I felt so much better that I had gotten a good update, had a full tummy and someone to lean on. We went back upstairs to the waiting room. The door was locked and the lights were out! I barely knew the hospital, didn't know where to go, who to call and was in a panic. A security guard that I had become friendly with walked past. I told her Tommy was in surgery and had been told to wait in that room. She opened the door for us. I was so grateful to her! About 10 minutes later, the original woman that had left me alone in that room came flying in screaming at us! The waiting room CLOSED at 9 pm and we were NOT to be in there. That was it for me. I'd had enough. I told her that until my son was out of surgery, I was not leaving. She told me to go to the adult waiting room down the hall. I refused and she stormed out.

I got a phone call shortly after telling me that Tommy was having a hard time making it off the heart lung machine and they were going to try another pass. Heart lung machine? This was serious! It hadn't even crossed my mind he'd be on bypass! An hour later, she called back to say he was fine, on his way back to PCICU and Dr. Bradley was on his way to speak to me. Crazy lady came to try to kick us out again and I told her Dr. Bradley was on his way. She told us fine, but after we spoke to him we HAD to leave. Whatever, Crazy lady.

I don't remember much about what Dr. Bradley said to me, except he looked very unsettled. My friend said he just looked tired. It looked like concern to me. I do remember him telling me that the first two days were critical. All I wanted was to see my baby. He was 5 pounds, 4 ounces, one month old and had just spent the last 5 hours having open heart surgery on a heart the size of a grape. I wanted my son! I was told they were getting him settled, it would be about 45 minutes.

As we left the waiting room to head down the hall to the adult ICU waiting room, the doors to the PCICU swung open as we passed. I saw a baby surrounded by several people, covered in lines and wires. I felt like I was looking at something I was not supposed to see and hurried past. 45 minutes dragged on and we were finally allowed in to see him. The baby I had seen had been mine. It was my son covered in lines and wires, still surrounded by people. Dr. Bradley sat by his bed observing everything. I was impressed! The surgeon who had just saved my son's life sat next to him like he was an old friend watching over him and protecting him. Amazes me to this day.

We scrubbed up and walked into the PCICU for the first time. Tommy was sedated, paralyzed and on a ventilator. He was covered to his chin with a blanket. His nurse explained everything to me. What every machine did, what every line meant. I asked how his stitches looked. He didn't have any. His poor body was so swollen that he had a dressing over his open wound. Once the swelling went down in a few days, they would close him up. I am not one to shy away from anything and I asked to see. She pulled back the blanket.


My son's heart beat before my very eyes beneath the yellow iodine dressing. I couldn't see the actual heart, but I did see the beats. Wow. I knew in that moment, looking into my son's chest that we could face anything. There would never be anything so wondrous as being in that moment. I became so strong for him right then and there.

The easy part was over. Now we would face the recovery.

Wednesday, January 20, 2010

Tommy's Story~Rocky Start

Tommy settled into the NICU and I settled into my recovery room. I had the desire to breastfeed him because I needed him to have every benefit in life. I had never breastfed before and had no idea what to expect. My body was a hormonal mess. I was supposed to still be pregnant and now my body was trying to play catch up. I had a lactation consultant come help me set up with a pump and gave me a chart. When I wasn't sleeping or trying to pump, I was going to see Tommy.

One of those times, he was about a day old. It's all really a fog and felt like a dream. I was standing next to his crib with his nurse across from me. We were talking when she stopped me. She called another nurse and asked her to verify if she could count respirations. She couldn't. Tommy had stopped breathing right there in front of me. An entire team swooped in, surrounding him. I remember backing away, trying to stay out of the way. The grandmother of the baby across from us put her arm around me spoke words of comfort. I don't remember them. I wasn't there. I was in shock. In reality, it was barely 5 minutes from beginning to end, but it felt like eternity. I was told some preemies just forget they are supposed to breathe. Tommy was put on CPAP.

He was on CPAP for a couple of days and had no more apnea episodes, so he was moved to a nasal cannula for just a little boost of oxygen, just to keep him comfortable. When he was 5 days old, I got double good news. Not only was I going to get to hold him for the very first time, I was going to give him his very first bottle! I was still pumping and dropped off every day. He wasn't very coordinated with the bottle and most of it just ran out of his mouth. Nobody was concerned because his suck/swallow/breathe reflexes were very new and sometimes it takes a few days to get it down. I loved holding him, but it took a team to get him to me. He had leads, wires, and a PICC line, plus a feeding tube and the nasal cannula. They put a pillow in my lap so I could rest my arms, then wrapped him in several blankets, held the lines to one side and moved the entire mass to me.

My mother in law took lots of pictures for me, but the light in the NICU made it hard to get many good shots, and some of that time, he was under bilirubin lights being treated for jaundice. I have lots of pictures of him bathed in soft, blue lights.

He was so small that his diapers were the size of a deck of cards. They were called Wee-Pees.

The hardest thing I ever did was get discharged from the hospital. I had it all under control until I got in the passenger seat and shut the door. I couldn't help but cry. My mother in law stayed with us for about two weeks. She was amazing. While I was bedridden in the hospital, she came and took care of the boys so Rob could work. She cleaned my entire house and used part of her inheritance to buy us a dishwasher and a new refrigerator with a water dispenser in the door for the always-thirsty Brandon. I settled in at home and tried to pump. I never did get much and what I did get took hours. After 3 weeks, my milk dried up. I blame it on stress.

When Tommy was 6 days old, he was moved to the Special Care Step Down Nursery. It's a place for stable, but premature babies. It's a small place with just six beds and two to three nurses on a shift, depending the number of babies. Tommy's nurse tried to feed him on two separate occasions and both times, she noticed he had a lot of trouble and the milk pooled in his mouth and he didn't swallow. A swallow study was done and then a scope. We found out that Tommy had a little secret. He couldn't swallow. He was diagnosed with cricopharyngeal dysfunction. The easiest way to describe a swallow is it is a series of squeezes. Each muscle in the esophagus grabs and squeezes, pushing the food down until it reaches the stomach. There is a muscle at the very top of the esophagus that begins the swallow called the cricopharygeal. It's the one that actually "captures" the food. Tommy's muscle worked sporadically. It opened when it wasn't supposed to and stayed closed when he tried to swallow.

Tommy's dysfunction was congenital, meaning he was born with it. Most cases of cricopharyngeal dysfunction are seen in adults who have had a stroke or an accident. To be born with it, meant Tommy might have a genetic birth defect and blood work was ordered to test for DiGeorge syndrome. It took about 6 weeks to confirm he was negative. Now his doctors were REALLY puzzled! Idiopathic congenital cricopharyngeal dysfunction??? No known cause??? Tommy became the "IT" boy of MUSC. As it turns out, this very diagnosis was the specialty of Tommy's ENT and Tommy would be one of his first patients in his new Airway and Aspiration clinic at the hospital.

Since Tommy was unable to swallow, he had surgery to put a tube directly in his stomach to feed him, called a Gastronomy tube, or Gtube for short. Tommy would get fed a special formula fed through a pump to the tube in his tummy. Saliva blocked his airway causing his oxygen saturation levels (sats) to drop. We had to learn how to use a machine to suction his mouth and nose to clear his airway. Tommy hated it, but we were quick and he settled down fairly quickly.

When he was three weeks old, talk started about bringing him home to grow before he had heart surgery. We rushed out to buy a carseat and stroller to hold all of his new gear. He would need an apnea monitor, a feeding pump, a suction machine, and IV pole to hold the feeding pump and portable oxygen. We were trained on how to use all of the machines and learned CPR. All that was left was a carseat test. Tommy had to be able to sit upright in a carseat for a determined length of time without his oxygen dropping. He wasn't passing, so a chest Xray was ordered. His lungs looked "wet" on the xray. The day before he was scheduled to go home, the decision was made to not only keep him, but to move him to the cardiac stepdown unit for monitoring. We were disappointed, but knew we had to do what was best for Tommy.

Dr. White, his ENT, gave Tommy injections of Botox to his crico muscle. In some cases, this had worked to paralyze the muscle in the open position so he could swallow, but it takes 3 days to find any results. He would be one month old in just 2 days. He was in a private room, so I spent a lot of time over the next couple of days holding him and taking pictures. He never cried. He was a peaceful, sweet baby.

That's why when the nurse called me telling me he was fussy, it was unusual.

Tommy's Story~ Crashing into the world

I was 30 weeks pregnant and finally enjoying feeling pregnant. I was having a son that decided to name Thomas, after a good friend of mine. We picked the middle name Lee, because it is Rob's middle name. We decided to call him Tommy because, well, Tommy Lee happens to be the drummer of Motley Crue and Rob and I are huge fans. It's true! We named him Tommy Lee on purpose. Ironically, after he was born, we tended to call him Thomas more than Tommy. Not sure why that happened. But I'm getting ahead of myself. On with the story.

I was on the computer using instant messenger with a friend. We were trying to keep her phone lines open so her daughter could call. I got up to use the bathroom. Not ten minutes later, I felt wet. I knew my bladder was empty because I just went. I was annoyed that I had somehow managed to wet myself. I went to the bathroom and discovered my water had broke! I went from laughing and enjoying being comfortably pregnant to being terrified. My water had broken early with both Matthew and Brandon, but they were both 3 weeks early, not 10.

I grabbed one of Brandon's diapers and put it in my underwear and screamed for Rob. I quickly typed to my friend that my kids were on the way to her house as soon as Rob dropped me off at the ER. I called the maternity ward to explain what was happening and who I was. This was very, very serious. My water had just broken with a baby who would surely die of his heart defects if he was born that night. Half way to the hospital, I realized I didn't know where I was supposed to be going. It is a big University hospital with several entrances. They told me where to meet them and I was greeted at our car with a wheelchair and escort.

I was taken to an exam room where the nurse said if I had ruptured, infection was our greatest threat, so she would not be doing an exam. Instead, she did a litmus test of the leaking fluid and confirmed it was indeed amniotic fluid and by the amount, I had indeed ruptured. I was rushed to a room where I was hooked up to antibiotics, given steroids for the baby's lungs and was hooked to a monitor. Miracle of miracles, I was NOT in labor! Our greatest challenge instead was that I was a diabetic. The steroids pushed my blood sugars through the roof to the point I needed an insulin drip. Once an hour for 48 hours, I groggily stretched out my finger to be pricked to test my blood sugar. 48 sticks in 1 finger. We could have used others, but after the third stick it was numb anyway.

Dr. Shirali came to see me. He told me he had reviewed Tommy's echo and not to worry, that his heart would be able to hold out for a while after he was born, so we wouldn't need to rush surgery. That was a huge relief. I transferred to the antepartum ward and was put on complete bed rest. I was responsible for my own care, but had nurses on call if I needed them. It allowed me to rest because there were no 4 a.m. vitals. I took my own medications, my own blood sugars and stuck myself with my own insulin needles. I also took my temp every morning and night and recorded it. I was allowed out of bed for a potty break and a 5 minute shower.

My amniotic fluid continued to leak, but I had an ultrasound and a non stress test every day. As long as I stayed hydrated, my body continued to make more fluid. Our goal was to get me to 35 weeks. I didn't make it. On the night of September 24th, my back began to ache and I could not get comfortable. The next morning I went to the bathroom as usual but soon realized my amniotic fluid was more red than normal. A sign I was actually bleeding again. I called my nurse who alerted my doctor. The bleeding slowed on its own and I was told I was on high alert, and if any small thing became out of order that we would induce. I folded a towel through my legs and got comfortable in bed on my side to rest. My friend brought Brandon to see me and we talked about an hour.

When she left, I got up to use the bathroom and found the towel soaked. My doctor told me she felt Tommy would be safer on the outside than the inside and we would induce. I asked to call my husband and mother in law and asked what day we were inducing. She looked at her watch and told me to hurry up with the calls, we were going NOW. As luck would have it, I could not get through to anyone, so I started leaving messages. Rob called back and told me he was on the way.

I was induced at 33 weeks. The pitocin was started at 4 p.m. Sometime around 4 cm I decided to have an epidural even though I had never had one before. I got stuck in the spine 3 times, trying to get a spot that didn't feel like I was being split in half. I finally didn't feel the third needle and the medication was started, except I kept feeling my contractions and never got numb. For the next 3 hours, I squeezed Rob's hand. I could only lay on my side because there were probes attached to Tommy's head and moving spiked his heart rate. I was put on oxygen to help him. I felt every single contraction starting in my hips, up my back, around my stomach, then down my thighs. It was decided that I would deliver in the OR because Tommy was such high risk. I was to be moved at 8 cm.

I could only have 1 person in the room with me to deliver. Rob has a very weak stomach and nearly passed out during Matthew and Brandon's births with no complications. He passed the torch over to my friend and told me he would see me when it was over. I didn't blame him one bit! We made it to the OR and all of a sudden my body took over. I had to be cathed. I couldn't control anything and my contractions were causing me to push before I was actually ready. The doctor told me to hold on for just a minute more, that I could push at 9 cm instead of 10 because he was going to be small. That was all I needed to hear. I ripped off the oxygen mask and about 2 minutes later, my son was born.

I never saw him. He was grabbed by the NICU nurse and rushed to the adjoining room. All I heard was the most beautiful, lusty cries! I spent another 10 minutes or so in the OR and was taken back to my room, where I started to shake all over. It was the medication from the epidural leaving my system. It never numbed me, but it sure let me know it was in my bloodstream. An hour later, they wheeled the incubator into my room. There he was. He had tiny leads stickered to his chest, a line coming from his umbilical stump, and and IV. He was so little and so big at the same time. 4 pounds, 5 ounces and 16 inches long. I got to spend 5 whole minutes with him before he was taken to the NICU for his first echocardiogram. We were told we could see him in about 2 hours.

About that time, my mother in law made it to the hospital from KY and I was settled into my recovery room...right next to the newborn nursery. All I could hear were crying babies and my baby was in the next building. Very sad!

We made it up to see him, but could only go in 2 at a time. We were told that his echo showed his heart was "balanced". Even though he had a serious defect, his body had learned to compensate and he was doing remarkably well and could probably wait several months to have any surgery at all. We learned his complete heart diagnosis. Double inlet left ventricle, transposition of the great arteries, and Pulmonary stenosis. It was also said he had a VSD, but the reality was it was so large that truly he had just one big ventricle. A three chamber heart mixing blood with oxygen and without oxygen in one spot. It didn't matter that his great arteries were reversed because they were dumping into the same place. The biggie was the stenosis (narrowing) of the artery that carried blood to the lungs. That would have to be opened eventually. But for now, he was okay.

We also learned that pathology had looked at the placenta and it had ruptured. Had we not induced when we did, he would have died. This would be close call number one for us. We also knew the way he manged to wiggle out from the monitors during our daily non stress tests and the way he rolled away from the ultrasound probe that he was very stubborn. Stubborn is good with sick babies. It meant he was a fighter.

Life with a baby in the NICU was starting for us.

Tuesday, January 19, 2010

Tommy's Story~The Beginning

In less than 3 weeks, Congenital Heart Defect Awareness week will be here. The internet is all aflutter with upcoming events to raise awareness for CHD. I am no different in my efforts. My story just has a different ending. Many of you already know that ending, but not so many know the beginning. I plan to break the story up a bit, posting a little bit at a time because there is so much to tell.

So we start at the beginning.

We started talking about adding to our family near the end of 2005. I found out I was pregnant in March 2006. It was a Valentine's Day baby. At the time, I was between jobs when two companies expressed hiring me the same week. One was working as a cashier for a new hardware store opening in the area. It meant a lot of time on my feet and heavy lifting. The other was taking inbound calls at a call center. Because I was in my first trimester, I went with the call center so I could sit and take care of myself.

My first trimester was filled with spotting. Because my previous pregnancy had been high risk, I was overly cautious. My pregnancy with Brandon was a scary thing. I had a low lying placenta that caused me to bleed out if I over exerted myself, gestational diabetes, a preterm scare and finally a premature birth. When I started spotting with the new pregnancy, my mind filled with worry.

My doctor told me it was implantation bleeding and not to worry. Eventually, it tapered off and finally stopped near the beginning of my third month. By my fourth month, I decided to switch jobs and take the cashier job. It was right down the street and I could walk to work. I thought it would be good for my body to walk every day. I felt great! I took it easy on my new job. I took breaks and put my feet up and took care of myself. No lifting. Rob had also taken a new job in February and the boys were in daycare and doing well. We were a typical two income family working hard to raise our family and prepare for our next child. I was 4 1/2 months pregnant and feeling fantastic. As a matter of fact, I didn't even feel pregnant. That nagged in the back of mind, but I put it off to all of the changes in our lives. Then everything changed.

It was a Sunday. My mother in law was visiting from KY. I went to work as usual and felt fine. About an hour into my shift, I felt uncomfortable, so I took a bathroom break. I was bleeding! I notified my supervisor, who sent me home immediately. Once I was home and called the doctors, I was told as long as the bleeding didn't increase to lay down and keep my feet up and come in first thing the next morning, which I did. I had an ultrasound and baby was fine. Placenta was fine, blood work was fine, everything was fine. Except I was soaking a full sized pad in less than a minute for no reason. I came in every 3 days for another ultrasound and each time, the same thing. Nothing was wrong with the baby or the placenta despite all of the bleeding.

After the third ultrasound, the midwife told me the technician couldn't get a good look at the baby. I wasn't surprised. It took 3 ultrasounds for the tech to "think" it was a boy. He was a stubborn little thing. I still didn't feel pregnant. I was 5 months and never felt the baby kick. The ultrasounds at least let me know someone was in there. Since they could not get good pictures of him in their office, they wanted to send me to Medical University of South Carolina (MUSC) for a level 2 ultrasound on the baby so they could check his heart and umbilical cord. Goody! Another ultrasound to peek at my little guy! I took my best friend with me.

That's the day my world changed.

We giggled with excitement as the tech started the ultrasound. Stubborn baby. Would I please turn on my side. Now the other side. Could I please pull my legs up. Now down again. Lift up the tummy a little. Push, pull, twist, turn. Somethings not right. It must be the machine. Let's move you to the next room and try again. Same scenario. More turning and twisting to get the baby in a good position. Aha! She had found the cause of the bleeding. A subchoronic hematoma. More twisting and turning. Finally, two hours later, she says the doctor will be in to talk to me. Oh, and it was definitely a boy!

I don't remember anything except a man in a white coat introducing himself as doctor so-and-so and telling me one side of my baby's heart was too small and his umbilical cord lacked a blood vessel. I was to report for a fetal echocardiogram. Now. No appointment, they're waiting. Wait. What?

We drove the two blocks to Children's hospital and reported to the 5th floor. They weren't kidding. I was taken right back. I found out a fetal echocardiogram is an ultrasound of just the baby's heart. Guess what? More push, pull, twist, turn. Stubborn, stubborn little guy!! Up until this point in my life, the only things I had ever heard about heart defects was Sylvester Stallone's daughter born with a small hole in her heart that was fixed. No details, just that she would grow up normal and healthy. I'd heard of murmurs, but didn't know what they were. I'd never heard the term Congenital Heart Defect. This was my 4th child, I wasn't a newbie at this. I knew the tests, I knew the statistics for Down Syndrome and spina bifida. Why all the hullabaloo over my baby?

After the tech finished the echo, my friend and I talked. Confused and a little scared, I didn't know what to think, except where did I go wrong? Did I overdo it somewhere in the beginning? Not enough vitamins? Secondhand smoke from someone I walked passed on the street? Two people walked into the room. His name was Dr. Shirali and he had his nurse with him. How gently do you break it to a mother her child could die? He was about to show me. Compassionately, he began to explain was a heart defect was. He told me it was nothing I had done and honestly, there was no explanation why. He had a booklet with drawings of different heart defects. My baby's defect was not in that book. It was too rare. Instead, he drew me a picture as he explained.

So, he'll grow out of it, right?

So much information to take in. There were options. We could do nothing. My baby would be born and we would take him home to make him comfortable and let him die naturally. It was called "compassionate care". What's so compassionate about letting your baby die while you let it happen? We could put our son through a series of surgeries that would reroute the way his body carried his blood to give him more oxygen. The first one would be shortly after he was born. My head swam. What about a heart transplant? It was not a good option because finding a heart that small that was a match was nearly impossible. Then I was given my third option. In the State of South Carolina, legally, I had 3 weeks to decide to abort the pregnancy. At that time, I would be 6 months. I told him about my history of preterm births. He told me the baby had to be born term or he would more than likely die.

How does a parent process all of this? Now I had to go home to tell my husband. He was devastated. I told him about the abortion option. Numb with grief, he left the decision to me. I started looking up my son's defect online. It took about an hour just to find out what it was. It really was rare. I read the medical statistics. I read about what to expect. None of it was good. My son would practically be an invalid for the rest of his life. I researched the abortion because I was feeling so lost and detached. I had never felt my baby move and now he had been given a death sentence. Should I just terminate and get on with our lives? I agonized over the decision.

And then the miracle that is Tommy, happened. Late in my 5th month, almost to my third trimester and nearing the end of time to make my decision, he kicked. I was pregnant! There was life in there! That little kick brought me so much hope. I knew I could never live with myself if I did not follow through with what we had started. Good, bad, life or death it was out of my hands and in God's. For the first time, I felt pregnant. I felt like I had something to look forward to. I started seeing a specialist with Maternal Fetal Medicine. I was diagnosed with gestational diabetes and was to start class in a few days to get my monitor and learn nutrition. Old news. My last pregnancy was diabetic too. Goodbye Sonic, Goodbye chocolate. I was 30 weeks into my pregnancy. Only 10 weeks to go!

So I thought.

Wednesday, January 13, 2010

Congenital Heart Defect Awareness Quilt Project

I don't remember how I first heard of the CHD Awareness Quilt Project. It just seemed like someone was always talking about their quilt block. I thought of submitting a request when Tommy was a baby, but he was a baby, he didn't have any particular interests or favorites yet. So I waited.

After he died, I looked them up to see what it was all about and what I needed to do to get Tommy a quilt block. I filled out the form with his likes and his personal information. There's no set time for a quilt block to be made. It just depends on when a volunteer is able to get it done.

I checked the page for a few weeks and realized it was going to be a very long time and moved on with life. I thought it might be a couple of years because of the long list of names. So MANY kids with heart defects and those were only the ones requesting a quilt block! Take a look at the honor roll on their page. It's stunning to see all of those names. Every single name is a child born with a CHD. Even if you don't read every name, scrolling through the sheer volume is an eye opener.

The morning after I posted my most recent blog entry, I lay down to take a nap as I do nearly every day. When I woke up, I checked my email as usual. I was not prepared to find the email telling me Tommy's quilt block was finished and a picture was included. When I saw it, I cried. I may never know who put together the most beautiful tribute to Tommy.

On the form, it asks for the child's favorites or likes, comments, etc to help make the block personal. Tommy was all about bubbles, Nemo and the color Red. I had no idea how those three things would pull together for a quilt block, but it did and it is amazing!

Everything is done by volunteers. If you would like to donate your talent, there is a link on their page with instructions on how to make the blocks as well as how to contact them. I have seen one quilt in person and it was breathtaking. Tommy's block is not yet on a quilt, but they will email me again when it is assigned to one. They will give me the quilt number and the position on the quilt. I hope to one day see it in person. The quilts travel all over the world and are shown at CHD events. If anyone ever spots his block on a quilt, I'd LOVE to hear about it!

Here is a picture of the beautiful block made for Tommy. I want to add one more thing. Since Tommy died, I have been looking for boy angels. Most of them have been cartoonish cherubs. When I see a picture of an angel, it's usually of a little girl in flowing robes and long blond hair. I wanted a picture of a boy angel! I've come across very few boy angels that looked angelic. If they weren't cherubs, they were just little boys with wings. Not what I was looking for.

I don't know where the volunteer found the applique of the angel, but that is what made me cry. Even down to the hair color, it's perfect!

Monday, January 11, 2010

In the Dark

Last night, as I tried to sleep, my mind wandered away from me. It fell to thoughts of Tommy and broke my heart all over again. I can only remember glimpses and moments, like little clips of time. I long to have minutes, hours, even days play back in my head. Last night, as I tried to make the memories stretch out into something more than a glimpse at a time, it struck me...

When August comes around this year and I am mourning the day he passed away, he will have been gone from this Earth longer than he lived on it. How can that be? Didn't he just die a few days ago? In my head it always feels like hours and years all at the same time.

I knew how sick he was when he was born. I knew what we were facing. I had prepared myself for his death so many times. Every day when he woke up was nothing short of a miracle. I had to make each moment count. I took so many pictures of him that when I put them all on disk, I have somewhere around 8 full DVDs at 4 gig each of pictures of him. Even so, when I look through them, I always wish there were more pictures. More memories.

Now that life has moved on and I have a typical job, I still keep up with other families with special needs kids. Lately, one of them has a child that may require a G-tube to eat safely. Looking back, I kept thinking how it wasn't a big deal that Tommy had a G-tube. I never understood why some people were nervous or felt bad around Tommy. He was just my kid and I was just being his mom. In all of my deep thoughts in the dark last night, I realized I gave birth to a son that could not swallow without aspirating. Could not breathe without a hole in his throat. Could not keep enough oxygen in his body without a machine. Whose heart was missing parts. Every day, I woke up and cleaned his body, along with caring for the extra holes he needed to live. I drew up medications in handfuls of syringes 3, 4 or more times a day and pushed them through a tube in his stomach. I hooked him up to a machine to give him nutrition and we went about our day and the machine softly hummed in the background. The constant buzz of the machine giving him enough oxygen to live. Counting exactly 24 links of blue tubing because any more or any less would alter the amount of oxygen he got.

Physical therapy, occupational therapy, speech therapy. Cardiologists, ENTs, surgeons, Synagis and flu shots, and monthly deliveries of oxygen and supplies to keep him alive. HOW did I do it all? How did I make the time for the medical AND the daily? I always knew his life would be short. I could never imagine him going to school, much less as an adult. My heart knew we would be lucky if he made it to 5 years old. We didn't make it to 2 years.

Could I change anything to have extended his life? Doubtful. After all of this time, and more nights in the dark like last night, I've analyzed it to death. I've read the autopsy so many times I've practically memorized it. Even though the catalyst was the bronchopneumonia that caused his body to work so hard that his heart stopped, Tommy was a time bomb.

He was in heart failure when he died. With the state of his lungs, there was no way he would have been listed for transplant. His lungs were trash. Pulmonary hypertension, asthma, reactive airway disease, chronic lung disease. Each breath was a miracle. I only wish we knew. I had prepared myself so many times before to let him go. When they told me when I was pregnant that he might not make it when he was born. When he was born 7 weeks early and I watched him stop breathing in the NICU and the crash cart came. He was barely a day old, and I was still a maternity patient, listening to the babies cry in the nursery next to my room while my baby struggled to live. Two emergency heart surgeries, both with unknown results. I'd mentally prepared so many times to let him go, but when it actually happened, I felt betrayed.

I wanted one more picture. I had my camera with me the entire 5 days he was in the hospital for the last time, but he looked so sick I didn't want to bother him with it. I was irritated at the doctors on call for ignoring me. The more I screamed for them to fix him, the more they hushed me. I was just the paranoid mama who'd been in that room too long. Guess what. I was right. There WAS something wrong with him! He was DYING! There was nothing we could have done to change that. Prolong his life a little if we'd caught the bronchopneumonia, but for how much longer? Days? A couple months? Rob has been in heart failure for 2 years now, but he's a grown man with a structurally sound heart, not missing pieces with trashy lungs.

The dark brings up such drudgery. I feel like my grief will never go away. Hot tears fell on my face last night. I want to say they fell like when he died, but truth be told, I've not had my "moment". All of this time has passed and I have been sad, angry, complacent, and numb. I've blogged, I've wept, I've lay in bed hugging his things. I've never broken down. I've come close. The tears fell for a little while as I felt sorry for myself and missed my boy, but I've never had that moment where I thought the bottom fell out and I would writhe in a pit of despair.

I always felt I should feel that way. My son died. I should have crawled in my bed for weeks and shut out the world, but I didn't. Being a blogging robot came instead. I took pity on myself and my fractured marriage and put all of my energy into that instead of grieving Tommy. Maybe that was the only way I got through each day. I could fix my marriage, I could not bring Tommy back. I think if I had not had that diversion to hyper focus on at the time that I would not have survived his death. It would have consumed me from the inside out.

Even now, I have to blog to be able to get on with my day. Because today I will go to work, come home and it will be time to go to bed again. I will lay down and turn off the lights and try to quiet my mind. And eventually, the soft images of my laughing boy will fill my mind to lull me to sleep if I am lucky.

Diagram of Tommy's Heart Defects

Diagram of Tommy's Heart Defects
Double Inlet Left Ventricle with Transpostion of the Great Arteries