The year was 1991 when I found out I was pregnant. I was told that when you finish your first trimester of pregnancy, you were “home free”. This did not ring true for me. When I completed my first trimester all my fears began. I began bleeding and did so every week, 3 days a week, for 5 weeks. The Doctors were unsure if I would be able to carry to full-term and was put on bed-rest and considered “high risk”. Yes, during my second trimester I almost miscarried 5 times. I was also gestational diabetic – which only complicated matters. However, at 37 weeks – I gave birth to a beautiful little boy weighing 5lbs 7 ½ oz., Tommy. He was tiny, but the Doctor’s said he was fine and three days later, we went home. I thought that all the “scary stuff” was over – but little did I know, it had just begun.
I was a young, first time Mother so I didn’t recognize any of the “signs” that something might be going on. I didn’t understand that it shouldn’t take him 45 minutes to drink 2 ounces of formula. I thought he was just a slow eater.
It was his 2 week check up that proved to be the most important Doctor’s Appointment in his little life.
I remember his Pediatrician listening to his heart and calmly telling me that she “hears” something and wanted him to be checked out by the Pediatric Cardiology Group over at All Children’s. I asked her if I could schedule his appointment for the following week because we were going out of town that weekend. She said, “No. I want him seen tomorrow.” I knew then that it must be serious. However, nothing could have prepared me for the next Doctor’s appointment.
I remember going to the Pediatric Cardiology Group (and back then there were only three Doctors: Dr. Henry, Dr. Martinez and Dr. Giroud.) I held my little baby in my arms, unsure of what they were going to tell me as they had all sorts of tests scheduled and sending me to this building and that building. I remember sitting in the lobby rocking him, waiting for his echocardiogram, when a lady kindly walked up to me and asked what we were there for. I told her that I wasn’t sure, but that the Doctor’s were testing his heart. That’s when she motioned to her son to come over and she introduced him to me. She smiled and said, “This is MY son and he’s 10 years old”, she lifted up his shirt to reveal his scar and said, “He had open heart surgery and he is just FINE.” With that, she patted me so gently on my arm, smiled and walked away. That moment always meant so much to me. A few moments later was his first echocardiogram and I watched in amazement, thinking how much it was like getting a sonogram, but with colors. I had no idea what was going on or what they were looking for – so finally I asked the Tech, “What’s wrong with him?”. The Tech looked at me a little dumbfounded and said, “Nobody’s talked to you, yet?” I shook my head. She said, “I don’t know exactly what it is, only that he has a heart defect”. Those words were a bomb going off in my head, in my heart that left me speechless and in disbelief. Afterwards, we were sent back to the Cardiologists office and brought back into a room – where (I believe it was Doctor Martinez) began talking (at that point, he could have been speaking Greek because I had NO IDEA what he was saying, I saw his mouth moving but nothing was making sense) as he drew a picture on the paper sheet on the bed. He was drawing and showing me, trying to explain to me what was going on – but the only thing I could register was, “Heart Defect”. The only other words I comprehended that moment was, “He’s being admitted and we are preparing him a room”. He was diagnosed with Tetralogy of Fallot.
The Doctor’s continued more testing and scheduled him for a Heart Cath. They explained to me what that was, all that it entailed and I knew that it was a way to see exactly to what degree his defect was and how it could be fixed. Within a week, he was in the Cath Lab with Dr. Giroud. We had hoped that he could get older, stronger, before his first open heart. However, only a couple of hours out of the Cath Lab, his oxygen level dropped down to the low 70’s and was dusky. The Nurses all came running, probably about 5 of them around him, while all I could do is sit back and let them do what they were experts in. One of his Nurses asked me later why it was that I stood back and I explained, “What am I able to do, other than get in YOUR way? I knew that I needed to stand back and let all of YOU figure it out and get him back”. She was surprised at my answer – but it was honest. Later that evening Dr. Giroud came in to look in on him and in Dr. Giroud fashion (*smile*) he looked down at this tiny little baby in this HUGE crib, tugged at his own hair and said, “You see this gray hair? YOU put this one on me today!” It was determined that Tommy wouldn’t be able to wait another 6 or so months, he needed his open heart immediately. Within a week he was scheduled and went in.
We lived in Largo at the time and decided NOT to stay at the Ronald McDonald House. My thoughts were: There are so many families from out of town, out of state who need a place to stay. We live locally and close enough to the Hospital, we can go home at night to sleep.
He came through the surgery all right, we went in and saw him and my heart was broken when I saw my tiny little man laying in this huge bed with all kinds of wires coming from him. The Doctor’s had to close the hole in his heart (which was a centimeter wide - pretty big for a little guy), open up his pulmonary valve and basically had to reconstruct his right ventricle. His Nurse had him covered up to his neck, but I asked to “see” his incision. She later asked me ‘why’ I wanted to ‘see’ and I explained it was so it would be “real” and I could understand it better. He had a pace maker, two IV’s going directly into his chest, the Pulse Ox on one toe, IV’s in both arms, a tube running out of his nose and a respirator to breathe for him. After visiting hours were over, we went home. Our roommate at the time asked, “How does he look?” and my son’s Father replied, “Open up the hood of your car – that’s what he looks like – with tubes and wires coming out of everywhere!” It was difficult all around.
Around midnight we got a phone call from the Hospital telling us that his blood pressure dropped. I remembered the Doctor’s and Nurses telling me that he’s got to get worse before he gets better – so I didn’t think much of it. About an hour later the Hospital called back and told us that his heart was swelling inside his chest cavity and that they needed our verbal permission to re-open his chest and lay him open until the swelling went down. We were also told that they didn’t expect him to make it through the night and if he did, he only had 50% chance after that … and that the Chaplain was on his way. His Father and I threw on our clothes and sped down to All Children’s. When we got there and went back to SICU to see him, he was a blue gray color and swollen. He was only 7lbs – but at this point was 9lbs because he had 2lbs of water weight! I saw his chest lay open, covered by what I called, “sterile saran wrap” and every kind of tube imaginable coming from him. We stayed in the waiting room that night – and didn’t leave the Hospital until daylight, when we knew he had made it through the worst of it. My son’s Father took me home to get a little sleep and then he went back to the Hospital. I was awoken a few hours later by a smiling face telling me, “He’s pink again!” and that was the best news I could have heard.
He lay open for a week until he was able to tolerate being closed again – but he was so sedated that he didn’t know any difference.
After two weeks like this, the Doctor’s told us that the fact he wasn’t getting any better was equivalent to him getting worse. It’s then that they decided to slowly take him off sedation and allow him to wake up enough to start breathing on his own. Every hour on the half hour I was in the room to see him in SICU and finally, when I went in, his eyes were little slits open. I wasn’t sure if he was actually ‘awake’ or sleeping with his eyes open … so I quickly brought my face towards his and his eyes flew open wide, before becoming slits again. I KNEW at that moment he could SEE me! I floated out of the SICU after that. After a few days he was taken off the ventilator and was breathing on his own and beginning to thrive!
I want to share this part, simply because I’m not sure if other Mother’s / Father’s have gone through this or not. However, when all of this was going on, I didn’t want ANYONE taking pictures of him. In my mind, this was my biggest nightmare coming true and I didn’t want any pictures to remind me of it. I was set against it. One of his Nurses, who I will treasure for all my days, insisted that she wanted to take a picture of him. She explained that she kept a ‘scrap book’ of all her “kids” and she wanted one for her scrap book. I agreed and she took a few pictures.
After Tommy came home, wonderful Colleen mailed me the pictures (*smile*) and I treasure them – so VERY much. As I said, these Nurses are “the Experts”.
The first (other than Colleen) picture I allowed to be taken was on Easter. I wouldn’t allow his picture be taken UNLESS he looked “decent” --- and on this day he looked great!
It’s because of this VERY moment that EVERY EASTER is so special to me and my most favorite Holiday! I’m reminded that Tommy’s first Easter was spent in the Hospital and that every single moment in life is special.
So, to me Easter also represents LIFE and the true celebration of life! It’s my celebration of Tommy. J
End of April, beginning of May, a month and one week after his open surgery (approximately when he was 2 months & 1 week old) Tommy came home. His medication was Lasix and Digoxin. The Digoxin allowed his heart to slow down so it would heal and the Lasix was a diuretic, which would cause the “3 pound diapers” HA HA! J
In October of that same year, he was scheduled for a second Heart Cath – four months later. The Doctor’s wanted to see how he was doing and how well the surgical repair was holding up. While in the Cath Lab he went into a blue spell of the 60’s and stayed down for 30 minutes before they could bring him back up. The Doctor’s decided to contact the Pioneers of Pediatric Cardiology in Boston – and they suggested angioplasty. They wanted Tommy to undergo a third Heart Cath, insert the balloon in order to widen the valve – to give him more time to get stronger before he needed more surgery. So, at the end of October, Tommy went back in for his 3rd Heart Cath with angioplasty. He went into the Cath Lab at noon. Both of his previous Heart Cath’s took a few hours and then they’d come and get me. I was sitting in the waiting room and it was getting later – and later. I saw his Cardiac Nurse Practitioner walking briskly down the hallway. A few moments later I saw his Cardiac Surgeon walking briskly down the hallway. My stomach went into knots. A few moments later, Tommy’s father and I were approached by the Nurse Practitioner, Cardiologist and his Surgeon and taken into the “Family Room”. We were told that Tommy’s blood pressure kept dropping and they didn’t know why. They had given him the blood that I had donated a day before and even still, it was dropping. His Cardiologist said, “He is being prepared for the O.R., now”. That’s when his Surgeon said, “No, he’s on the gurney on his way, now!” We were told that if they didn’t do this RIGHT NOW, he would die on the table. A very special and amazing thing happened right then – a true tribute to the Pediatric Cardiologists at All Children’s Hospital. Tommy’s Cardiologist looked at his Colleague the Surgeon and said, “I’m assisting” – as they both looked at another and nodded solemnly.
Tommy didn’t get out of surgery until 10pm that night – ten hours under the knife. His Cardiologist NEVER ONCE left his side. We were told what happened was – during the angioplasty; his surgical repair was damaged and leaking – causing his blood pressure to drop. They took someone else’s tissue and wrapped it around his pulmonary valve to stop the leak and to get him “back”.
Thankfulness and sincere gratitude doesn’t even BEGIN to explain how I felt and still to this day, feel. How can you THANK someone who gave you back your baby – who saved your baby’s life? It’s such an amazing gift – in which I know I can never repay.
Tommy was in the hospital for a week and one day.
He was taken off all his meds at a year old. Soon afterwards, he began yearly visits.
I will NEVER forget when he was around 3 years old; I took him in for his yearly check up. I had specifically asked for Dr. Giroud. I explained to Tommy that this was a very SPECIAL Doctor who was a very nice man. When Dr. Giroud walked into the room, for whatever reason, Tommy went running over to him and gave him a HUGE HUG on his leg and just held on to him. Neither Dr. Giroud’s eyes nor mine were dry – it was such a sweet moment.
I think it was when he was ten years old; I took him in for his yearly check up. Dr. Giroud walked into our room, smiling ear to ear to see us and amazed at how wonderful he looks and said, “Tom – come here, I need you to help me with something …” and patted him on the back and walked him into the room next to us. There in the next room was a newly diagnosed family … and this time, it was Tommy’s turn to lift up HIS shirt and show this family that HE was okay, and so would their baby be. *smile*
We were told that between the ages of 9-12, he would need his third open heart. At 10 years old, the Doctor’s said he was still doing wonderfully and could even wait until he’s 12-16 years old. His last visit we asked again, in which we were told that he may even be able to wait until he’s 18. Tommy is now 15 years old and says that he WANTS his next surgery NEXT year at 16. He says, “Mom – I don’t care if they say I can WAIT, if they say I can have it, I WANT it because I want to get it done and over with!”
We were told that since they used someone else’s tissue to patch the valve, they have to treat it like plastic because it will NOT grow with him. Therefore, his pulmonary valve is the same size now, as it was when he was 6 months old. This is why he still needs a 3rd Open Heart Surgery.
Tommy is healthy, happy and thriving wonderfully. He loves Alternative Rock Music, playing video games, hanging out with his baby sister, friends and cousins, watching movies, swimming and helping other people. He’s not afraid of illnesses and has an understanding that, in my opinion, is a true gift from the Lord above. Two of his closest friends have been diagnosed with medical problems of their own. One with Cancer and the other with Seizures. Because of Tommy’s own medical battles, he’s very aware of what’s going on around him and sensitive to others. He visits his friend with Cancer every chance he gets and has been known to sit with him in the Hospital to play video games. He calls his other friend as much as possible and truly ‘cares’ about him.
Now we are involved with Mended Little Hearts, which is an amazing outlet for him. He has wanted, ever since he was a little tyke, to talk to other kids and families about Heart Surgery and what it’s like living with a congenital heart defect. Mended Little Hearts is allowing him to do just that – and meet other kids / adults / families that understand what it’s like being him. I think it helps him feel “not so different” from everybody else … and he looks at the babies with a smile. It helps ME … because I meet new families, Mother’s and Father’s who understand that fear, that joy and that simple true understanding that many can’t imagine.
Tommy is going into 9th Grade next year and hopes to pursue a career doing what he’s great at – fixing things with his hands – auto body and auto mechanics. J This is my son – “Tom” … now. Braces and all! J
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