Ethan was an unexpected surprise. My husband (at the time) and I were on rocky ground and thinking of ending the relationship. During a brief reconciliation we conceived Ethan despite me being on birth control. I'll forever wonder if that caused his problems, especially since I was on the same type of birth control when I conceived my oldest and he is perfectly healthy.

I was scared and didn't tell my husband that I was pregnant. When I was 3 months along he kicked my sons and I out for the 13th time. 2 day later I told him I was pregnant and after refusing to abort the baby, he kicked me in the stomach - needless to say I didn't go back. DId this cause his heart problems? I don't know! But it did cause contractions.

I had the first contractions at 14 weeks and shortly thereafter went on medication to control it. I battled to keep Ethan inside me for as long as possible and several times I'd dilate, then dilate more and they though that was it. But we held on! One of the control methods was a pump attached to my hip giving regular shots of terbutaline - to stop contractions. I also received several rounds of betamethazone shots to mature his lungs when they thought he was coming. So when the pump came off at 34 weeks, I went into labor 2 days later. It started with bleeding, then at the hospital I was waiting to have the bleeding checked and thought my water broke - but it was blood! Things moved fast (they always do for me) and I was holding my 6.5 lbs little boy 6 weeks sooner than I should have, but much later than I thought I would! They wisked him away a mere 5 minutes later because he was early. After his apgars were calculated, he showed signs of respiratory distress and had some oxygen blown nearby and all seemed well. He was hypoglycemic (because he was early, likely) and received a bottle (he was gavage fed, with a tube down his throat) rather than an IV. They ran routine tests and his CBC (white blood cell) count came back high - indicating infection. I was GBS positive, so there was fear of meningitis and an IV was done anyways for IV antibiotics. The cultures came back negative, thankfully.

He was born at 2:45 am and later that morning while I was holding him, a nurse bringing me my breakfast commented "is he always that color?" and I thought, well what color is a barely 6 hour old baby supposed to be? I noticed he was quite gray though. I pointed it out to the baby nurse and after checking his stats, she massaged him to get circulation moving more and he pinked up nicely. I sighed relief that he was ok. WRONG!

The next morning, the ped on duty (who happened to be his regular ped) was making the morning rounds. I had just woken up and gotten ready and went to pick him up (it was 8am, he wasn't allowed to stay the night with me because he was early and had to be watched for apnea and brady spells). She was checking Ethan out and as soon as I walked up, told me that she heard a murmur but not to worry, murmurs are common and it could just be the PDA closing. But as was routine in newborn murmurs, she was calling in a pediatric cardiologist for his opinion. I thought "ok, everything else turned out fine, so will this". WRONG!

I was told that they'd likely take him for an EKG that afternoon, but a mere 2 hours lated (10am) a doctor walked in and sat down. I went numb because I knew doctors only sat down when they expected a long talk! He introduced himself and handed me a book "Congenital Heart Defects". I was confused....did he have the wrong room? I didn't have a heart defect. He shook his head and told me he was here about Ethan. I nearly fell out of the bed and asked if Ethan was ok, he said he was ok right now. He went on to explain that Ethan had a hole between the lower chambers of the heart, called a ventricular septal defect (VSD), but rather being located in the heart muscle, it was located in the pulmonary wall and part of the aortic valve. This made it a very rare defect, only 1% of all heart defects are like Ethan's. His VSD is called a sub-pulmonary VSD. Being that it wasn't in the heart muscle, it won't ever close and may actually get bigger (much the way a hole in a balloon gets bigger and the balloon is blown up). He told me that because of the location of the hole, his aortic valve was leaking. This means most of the blood is flowing out, but some of Ethan's is spit back in (basically!). I was told that he'd need surgery when he was about 3-4 months old. I was also told that he wouldn't have any symptoms of CHF until about that time anyways. WRONG!

I went home shaky but hopeful. After all I got to take my beautiful boy home despite himbeing early and this heart thing - it couldn't be that bad, right? Well one Saturday 3 weeks after he was born, I asked my mom if she thought he looked a little yellow - its hard to tell because he is olive skinned. She thought he did and I talked to the ped on call who suggested taking him in because it was Saturday and because of his heart they didn't want to take any chances. He was slightly jaundiced, but nothing to be really worried about. But they found his breathing to be nearly triple what it should be, and his heart almost double. His liver was enlarged and his lungs were wet. Classic symptoms of CHF. But we caught it early, and he started on digoxin and lasix.

Over the next few months, there were ups and downs and slowly his dosages went up. We were getting hopeful that we'd begin trying to wean him from the meds at 6 months when he got sick. He had a cold for awhile then started a temp. I took him in thinking "just an ear infection". This was the second worst day of my life! He had RSV and his o2 sats were in the 70's. He had to be transported to the hospital on oxygen and was in for 8 days. He'd never really gained weight well, but a few weeks after he was released - at his 6 months check up - I found out that he'd lost more than a pound! That along with the fact that his height and head circ had slowly dropped off, that decided to put in an NG tube (a feeding tube through the nose to the stomach). When he was released, he was sent home with a nebulizer to help relieve his asthma which was a result of the RSV. During this time we also learned that he had a second hole! A small one, in the muscle, it would likely close on its own - but still! A defect we were never told about! THe other hole was an atrial septal defect (ASD). Ethan developed reflux as a result of the tube, but Prilosec is helping keep it under control and he only really spits up when he is sick now.

Ethan is 8 months old now and has been gaining, on average, just over a pound a month curtosy of his feeding tube and prescription high calorie formula. He is about 13 1/2 lbs now - finally doubled his birth weight! He has started growing again, too (height wise) and because of that and the amount of solids he is eating, we have begun weaning from the tube and really pushing the cup. I nursed him for almost 7 months with great difficulty because he's always been a poor eater, taking in less than 1/2 the recommended amout of breastmilk/formula. I pumped for him for 5 months, too. But he has stopped taking bottles too, so except for his solids, he relies solely on the tube. We are looking at this summer to possibly operate. He has to have his holes corrected, but just WHEN hasn't been decided. His heart has always done relatively well - certainly better than they thought! Ethan is a fighter, he is winning his battle with CHD. He has many people behind him, loving him and literally thousands praying for him. We'll make it, I know we will. His defects are 100% repairable. I can't wait!

Update - On May 13, 2001 - following a nearly month long battle with a nasty cough and cold - Ethan ran a 105+ temp and I called the pediatrician for a referral to the after hours clinic at the ER (it was Sunday morning) and while on the phone with her, I noticed that Ethan was turning blue. Feeling very calm (a surprise!), I called 911 and told them I had a 9 month old heart patient needing oxygen help and the fire EMT arrived in just over a minute and the ambulance in 3.5 minutes. It was horrific to see them running in with "the box" (what they called the machine that shocks the heart into beating again) along with all the other devices. They started an IV and checked his vitals (his blood oxygen level was 52% and he was breathly very shallow and fast - they timed it at 102 breaths a minute while I timed it at 98, for those unfamilar - healthy babies take about 30-40 breaths a minute). I vividly remember walking out of the house carrying Ethan to the ambulance and not even thinking about the other 2 boys. A police officer stopped me long enough to ask for emergency telephone number for the Ibu and Elijah - and a neighbor whom I had grown close to (they are older) took him into the house to show him where I keep the emergency info (always posted by the phone) and they called my parents who raced over immediately.

Anyways, I carried Ethan to the ambulance where they strapped him down to keep him from rolling off bed/stretcher thingy that had itsy bitsy looking rails. By this time Ethan had passed out and was very gray and his o2 levels were nearing 30%. We were at the hospital in less than 5 minutes (ever ride in an ambulance? its surreal) and they allowed me to carry Ethan again while they ran beside me and we met the ER doctors (3 of them) in a cube/cell like place and I put Ethan down and the first thing they did was intubate him (the ambulance did not have the things needed to intubate an infant, they blew oxygen in his face is all). His O2 levels were 38% now and his heartbeat was 182 bpm and his breathing was 102. They gave him something through his IV to make his heart relax and told me it dangerous because it could make his heart and lungs relax so much they could stop. But it was dangerous NOT to do it, too! By now I was crying because I couldn't hold Ethan and was telling them to call my mom because I couldn't do this alone. A resident took me to the waiting room and I asked him if it was RSV again and he said no it was pneumonia and it was bad and just the fact that he was deteriorating so fast during the ride over meant he might not make it. They told me he had less than a 30% chance of surviving the night!!!!

While I sat in the waiting for about 10 minutes before I remembed I had other kids and I yelled to the nurse that I left them home alone. She told me that the police officer stayed with them for about 20 minutes until my parents came. I asked how they knew to call me parents and she said didn't know (I found out later). Right then my mom walked in because she knew I needed her I told her they told me he was going to die. She was my rock and after getting the correct info, she told me over and over that if I forgot that 30% chance and didn't adamently claim it to be 40% chance and remember that he was still very much alive, then I would lose him.

Anyways sometime in that time period, his cardiologist - Dr McIrvin - walked in and a hospital social worker was with him. He told me that Ethan's aortic valve was leaking massively and he needs to be repaired as soon as he can. I asked him where was the paper to sign to ok surgery and he sat down. I told him not to sit down because every time he ever sat down it meant bad news. He just looked at me and I told him not to tell me because I could not bury another child. I thought he was the bearer of bad news because we had a relationship (dr/patient, lol). He was saying "no no no" and told me that while he needs immediate repair, they couldn't do it because Ethan would never come off life support. He was to weak, to unstable. He talked about doing a pulmonary artery banding, but it would have to wait until Ethan stabilized. But to give his body a break, he was on a ventilator and completely sedated.

When I saw him that night (it was night? I don't even remember it being daylight!), he was gray, still, hooked to life support, so many machines, tubes, wires. Just him in a diaper and the whoosh whoosh whoosh of the machine breathing for him. I thought he was dead to me and that night I knew if they asked if I wanted the machines turned off I'd say yes. Although he didn't improve alot, I did. I started to accept it and when I saw him still alive in the morning - I knew that he'd survive. He wouldn't die. They'd said "less than 30% of surviving the night" and he'd beaten the odds! My little fighter.

3 days later they let the sedation wear off and on Friday (5 days after being admitted) he pulled out the vent. It was to early though and it went back in. But they took it out on Sunday and it stayed out. He also had a g-tube inserted (previously it had been an NG -tube) and was put on continuous oxygen (nasal cannula) and over the next week he went from 100% oxygen to 30% where it is now. That same week his g-tube incision became infected and he developed an ear infection. We also learned that he was allergic to amoxicylln, penicylln and erythamician. He tolerated Suprax well though. The next week saw him through atrial flutters (irregular heartbeat) and a heart catheter to determine the cause. it turned out that it wasn't atrial flutters but rather the backflow of blood through his aortic valve. I guess that mixed with the sounds of his holes...that must have confused them. I'm still confused actually.

He was in the hospital for almost a month. He came home on 30% oxygen via a cannula, totally reliant on his g-tube and the same prescription formula to help his weight gain, he is taking 6 different meds including an iron supplement because he is borderline anemic. We are working to get him to sit alone again, as well as roll over and other skills he lost by being so listless in the hospital. And today I noticed that he has cut another tooth with #4 following right behind. He got his first 2 in around 4 months - so its been a long wait for the next ones!

Dawn

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