By: Stephanie S.
I often tell people that the first three months of my son's life were horrible, but I doubt they fully understand why. My son, my only child, was born on Christmas Eve with a congenital heart defect called tetralogy of fallot, diagnosed about 8 hours after his birth. Although this defect is relatively easy to fix as far as heart defects go, he had a very severe form of it. I had a very long labor and a difficult birth requiring vacuum extraction. He was shipped off to the NICU immediately for evaluation because of his pale color and difficulty breathing. He spent 15 days in the NICU and had a temporary shunt put in his heart to allow blood flow to his lungs. After 2.5 weeks in the hospital, he finally came home.
Those days in the NICU were soul-suckingly exhausting. We spent 5 days at his birth hospital because the neonatologist was concerned he also had an infection and he was jaundiced. He was then transferred to another hospital where, on admittance, the resident told me it was possible he would turn "as blue as a popsicle stick, so to speak" and then listed the litany of things that might go wrong with his condition. We were told that he needed a temporary shunt put in as soon as possible, and then would need a full open heart repair at about 4-5 months old. Of course, it was the New Year holiday so we had to wait for the surgeons to consult about his surgery before they could schedule it. We had no idea how long we would be there, and how he would last without the surgery.
I had desperately wanted to breastfeed, and so pumped every 3 hours day and night. I was so exhausted I'm not sure how I functioned. I spent a lot of time crying, anxious, worried. All normal for my situation, so I thought. I was having trouble developing a milk supply and visited the breastfeeding clinic for advice. They weren't sure what to tell me as I sat there and cried about my lack of milk. They told me to relax and sleep more, but I couldn't. When I came home from the hospital each night I would sit in the recliner and hold one of his shirts on my empty tummy and cry for hours.
When he finally came home we had one great week--he slept most of the time in his crib, ate pretty well, and didn't seem to be in very much pain. I started to sleep a little better. But when he was three weeks old everything fell apart--suddenly he became a high-needs baby, needing to be held all the time, refusing to sleep except when on my chest. I couldn't pump anymore because I couldn't put him down. I stopped sleeping too. All I could see when I closed my eyes were visions of him in the hospital, or waking up to find him blue and dead. The cardiologist had told us to watch for signs he was outgrowing the shunt (turning blue, trouble breathing, etc.) I stopped sleeping entirely, all I did was lie awake and stare at him next to me in our bed. He had to eat every three hours (at least) because of the shunt (if he got dehydrated it could close and he might die). My husband had gone back to work and I didn't have any friends or family in the area. Most of my friends lived 30 miles away, and didn't know what to do for us I think. I had no idea that what I was feeling was excessive even for our situation, but in hindsight it definitely was.
Since I wasn't able to pump as much, I tried to get him to breastfeed. But I would feel so anxious and trapped while he nursed, especially at night. My heart would pound, skip beats, and I felt like I was dying. I just wanted to get away. During the day I could never put him down because he would cry, and if he cried he would turn blue. So I just sat in the chair with him all day, waiting for my husband to get home so I could sleep for an hour or two. If I thought his color was a little off I would panic and flip on all the lights to examine him closely, then spend hours trembling, shaking, and crying, just holding him so tightly.
I stopped eating, losing about 30lbs in one month. I began to just think everything would be so much better if neither of us were around. I wouldn't have to worry about him anymore; he wouldn't have to suffer through open-heart surgery in a few months. On Mondays I took him to his pediatrician for a weight check, and the urge to drive into a tree or off the overpass was overwhelming. I didn't tell my husband about these thoughts because I didn't want him to worry more on top of all the worrying about our son's condition. I never left the house except for these trips. At home when we took baths together (he screamed in his baby bathtub) I was so afraid I would drown him and at the same time thought it might be the best solution. It was so strange--I knew deep down I wouldn't do it but I couldn't stop thinking about it. If I just let go of him, the pain and anxiety would go away.
Our breastfeeding difficulties were a major source of my depression. When I was pregnant my greatest fear was that I wouldn't make enough milk, and sure enough, this was exactly what happened. I tried everything the lactation consultants recommended, plus did a lot of online research. Nothing worked. It killed me that he had to get formula. I felt like my body had failed him. I cried with every pumping session and every feeding. I felt like the pathetic drops of milk in the bottles were a symbol of what a horrible mother I was, and of all the horrible things I would do to him in the next 20 years. At my postpartum checkup my OB prescribed Reglan, and when I read about the side effects on the web (nausea, depression!) I ordered domperidone to switch to. The meds gave me twice as much milk, still far from enough. I was obsessed with making more milk. Just thinking about breastfeeding made me cry.
My husband kept trying to help me by taking care of our son in the evenings so I could sleep, but I couldn't, I would just lie in bed and see images of him so pale, with all those tubes. I had read on an internet board about another "heart" baby about the same age as our son who had just turned blue and died while eating, and I was so terrified of this happening I would panic and cry every time he ate, and made my husband feed him whenever he was home. I dreaded my husband leaving every morning since I knew I would have to hold him and feed him and take care of him all day long--what if something happened? I still couldn't put him down, so I never showered. I couldn't concentrate on anything; I just watched a lot of TV while he slept on my chest.
Once in late February I made myself leave the house with him to visit my friends 30 miles away. The trip was a nightmare. He screamed the whole way there, and then I had to take care of him away from home. I was jittery and my friends noticed how different I was. I hadn't seen them since my son was born. No one said anything to me at the time, but I wish they had! Only later did I find out how scary I acted. He also screamed the whole way home and by the time we got home he was blue. I cried the whole way home too, and rushed to bring him in the house. I was so upset I didn't even notice he was blue. My husband did, and called the hospital right away. His color came back once I held him, and the hospital recommended that if it happened again we move up our standing cardiologist appointment.
Around this time my husband suggested that I go see the new Lord of the Rings movie, which I hadn't been able to see since I had the flu when it came out and then went into labor. I remembered that I had really wanted to see it, but it seemed like the last thing I wanted to do. I had no interest at all; the only thing I wanted was to sleep and rest and for all the pain to go away. He said this was the clincher for him--something was definitely wrong with me. He told me he thought I had PPD and I began to consider that my behavior and feelings were a little worse than might be expected with our situation. I took a test on the internet and scored very high. I looked at some PPD support boards, and posted my situation, and someone suggested I call my OB to ask about PPD. At my appointment the midwife first suggested that I take vitamin B-6 and rest more. I just started bawling. She asked if I was sleeping, I said no. She asked, somewhat jokingly, if I thought about harming myself, and I said, "well I often consider driving into a tree if that's what you mean." She got more serious then, and gave me a hug and two sample packs of 50mg Zoloft. About a week and a half later while I was cooking dinner I had this brief flash of the strangest feeling--it was, I think, happiness, or at least not utter despair. I felt the slightest glimmer of my old life, and I realized how truly awful I had been feeling.
By early March my son began to turn blue every morning when he woke up. He was always congested in the mornings and I wake up before him and hold the nose sucker ready so I could suction him out before he got really upset and turned purple. Before the zoloft I would have spent a good 3 hours crying afterwards. With zoloft, only about half an hour. It helped me pull myself out of the panic. We had an emergency cardiologist appointment in mid-March and surgery was scheduled for a few days later. I never could have gotten through it without the meds.
It was awful, but he did fine in surgery and came home 5 days later. The next month was pretty tough, as he had a lot of trouble sleeping and eating. We finally figured out he had a dairy allergy, and things began to get a little better. His bad days and my bad days always seem to go together though, as if we are feeding off each other. He is getting slightly more independent as he has learned to sit and crawl, and can sleep on his own for naps now most of the time. I am just now, almost 8 months after his birth, starting therapy and hoping to wean off the zoloft soon. I consider myself very lucky that zoloft has worked for me, and that I was able to ask for help before I reached the breaking point, for my family's sake.