It was a day full of mixed emotions, two days after my pregnancy due date. The only option given to me was to have an emergency c-section after several hours of grueling labor. My vital signs looked fine but my son’s was showing some distress on the monitor. I wanted so bad to give birth naturally (just like the previous one) y’know, the “my-mom-gave-birth-to-4-children-naturally”-kind-of-stubbornness but I can’t put his life at risk at that point nor did I want to be the reason for any serious complications. I obliged.
I was wheeled into the OR and was given a dose of anesthesia. It made me nauseous, numb and dizzy. It made me puke. I felt the medication was a bit too much for my small body frame. Although a bit tired, I was aware the whole time and I could feel the gentle tugging around my midsection as the medical staff performed the surgery. My son was born screaming and was the loudest crying baby I’ve ever heard. He was wide awake and very active. He looked cute, healthy and wrinkly, too. He was also covered with meconium and so the nurses cleaned him up before they let me hold him.
We took him home that very day. My in-laws had been with us for a whole month since we expected that he would pop out two weeks prior. It was nice to get some needed help and hang out with the grandparents. We immediately set out an appointment with our son’s pediatrician and he was given all flying colors. The kid was a good eater. He was bumped into the 95% growth by the end of the week which thrilled us since I am a petite Asian momma. 🙂
The Beginning of Eczema
At his two month check up, we asked the doctor if we could take him on a trip to the mountains in Georgia and have his vaccinations rescheduled. We rented a cozy cabin in the Blue Ridge mountains and both kids slept through the 6 hour drive there. Occasionally, he would wake up and I’d offer him mother’s milk.
When we woke up the next day, I noticed a weeping and oozing breakout on his cheek. I also noticed the stain on the pillow from where his cheek was that night.
We enjoyed the trip but we went home the next day and took him to the doctor. He was prescribed a topical antibiotic and an oral antibiotic. It did not seem to help. In fact, his condition worsened. The rash spread all over his face and dry patches started to appear. We took him back to the doctor after a few days. At this time, he started having other issues. He became fussy and restless although still very much a voracious eater. He just loved to drink his milk.
Stomach Issues And Sleepless Nights
At his 4th month check up, we found out that he had not gained weight since his 2 month doctor’s visit. I couldn’t count the many times I was asked what I usually eat followed by advise on what I should not eat. This was just the beginning of those countless times. In fact, even non-medical people would give me their two cents. Doc advised me to stop EBF temporarily and sent us home with formula samples while we figure out what was causing the problem. We tried Nutramigen for that week. The medical staff monitored his weight very closely. After a week, he still had not gained weight. He was diagnosed “failure to thrive” by then. It was very devastating. Our concern about the eczema now became second priority while we discuss issues on his GI issues and growth.
I consulted dr. Google, desperately looking for answers or for similar situations. Our pediatrician recommended that we go see a pediatric gastroenterologist. We frequented the docs at this time but our son still had not gained any weight at all. GI doc also advised that we switch to Elecare which made my poor baby throw up the first time I gave it to him. I found out about Alimentum Ready-to-Feed as I read positive reviews about it online. I gave it to him as well. He seemed to tolerate it better but the weight gain was very minimal. I remember how dark that part of our year was. We spent most of the winter holidays going in and out of the hospital and clinics.
His eczema got worse, he developed a diaper rash that could not not be treated by OTC creams. We were prescribed a compound cream for that. His soft baby skin was raw with red sores and each diaper change was just unbearable. He would scream from all the pain. His eczema treatment consisted of a combination of emollients and steroids. The doses become stronger from each last visit. We also visited the dermatologist where they deliberated other treatments. We would come home with ointments, creams or lotions and was recommended to do bleach baths and wrapping. I also developed a new kind of fear and doubt that my son was just being used as an experiment in a study for a new drug. A few friends also recommended different things as well, from cream products, natural herbs, to essential oils and baths. I was willing to try anything and everything but due to his age, I was extra careful not to implicate him any further.
After finally getting another appointment with the GI doctor (very busy doctor), he asked us to try giving him Elecare again. The nutritionist suggested that we also add coconut oil into the milk. Although he was not yet gaining much, he was able to take in the milk much better this time. He was about 8 months at this time.
According to www.kidswithfoodallergies.com:
Extensively-Hydrolyzed Formulas (e.g. Alimentum® or Nutramigen®)
Extensively-hydrolyzed formulas are hypoallergenic. They offer complete nutrition for infants who cannot digest intact cow’s milk protein. They also help infants who are intolerant or allergic to intact cow’s milk protein. These formulas break casein into pieces. Casein is a cow’s milk protein. 90 percent of cow’s milk-allergic babies will not recognize the piece of protein as an allergen. These formulas are also useful in some cases of malabsorption.
Amino Acid-Based Formulas (e.g. Neocate® or EleCare®)
Amino acid-based formulas offer complete nutrition for infants. These formulas are for infants who are unable to tolerate extensively-hydrolyzed formulas. Amino acid-based formulas are also known as “elemental” formulas.
The sleepless nights became nightmares. There were moments when I would just sit and stare at my son while he slept in my arms and tears would rush down my face. I felt a sense of helplessness. I was an emotional wreck. My back would hurt from sitting for long periods but I knew it was not even comparable to how my son was suffering. I was always sad for him. I wanted him to get as much sleep as he needed but he would wake up and cry very often. The feedings would make him fall asleep again, sometimes it would make him throw up. On good nights, we would get a total of two to four hours of sleep. On most nights, sleep was elusive. He would doze off early morning while I went about my day like a zombie as I took care of my daughter and kept our house in a mess. I felt sorry for both my children and for my husband who had to get up early for work everyday. The blisters on my son’s face looked very raw and red sores appeared all over his body. His hair fell out as sores (extreme case of cradle cap) also appeared on his head. His skin would then get scaly and extremely dry and then back to wet and oozing. It was a vicious cycle.
One day, we visited the ER when my son’s fontanel swelled. He also had a fever the previous night, so we packed our bags and on to the hospital we went. Poor baby got needles stuck on him so many times I had to look away. The frequent coming in of medical students and personnel irritated me so much, (almost every 30 minutes) I asked the nurse to just leave us alone which they did for 2 hours. He seemed better the next early morning and I begged to go home but the doctors wanted us to stay for another night so they could observe him more. We stayed in the hospital for a couple more nights.
There were a few times when the rash on his face would look a bit smoother and people would comment, “He looks better”. I couldn’t help but smile awkwardly and say, “I hope so”. It was not easy to stay positive but focusing on my child’s welfare and keeping myself busy in taking care of his needs kept me from my own discomfort. At 8 months, my son barely interacted. His favorite activity was to scratch. At night, his sleep got interrupted so often as he scratched ’til he bled. I tried my best to stay awake at night to make sure he wouldn’t and couldn’t scratch (sorry, baby). I always let him sleep in my arms so I could monitor him. I dressed him in long sleeves so he couldn’t bother his arms but then he’d feel hot and get sweaty. It would take us 3-5 times of changes of pajamas just for the night alone. It was a no-win situation. I took less and less photos of him as it made me feel guilty to capture him in his misery. People would ask, “Does he crawl yet? Does he talk yet? Does he walk yet?”
Circle of Support
I met a couple of women who went through the same experience as I did. One lady shared with me that her son grew out of it at 4 years old. There’s hope, but at that time hope was just too far away. The more, I researched and read about eczema, the more it consumed me. I sometimes joked with my husband that by the time my son’s condition get better, I would also receive my Master’s Degree in Eczema. It was a problem that a lot of people experience, from babies to adults, and yet the topic was so vague. There’s just so much to learn. Finally, I grew tired of looking for answers. I gave up reading and studying about eczema to lessen my emotional and physical stress. This was when I began to just let it go. I learned to place it all on the Master Healer. Although I have always been so easy-go-lucky about life, my son’s condition was one that I took very seriously. Perhaps, much more than anything else. And at that time, I felt so defeated because I realize nobody can heal my son. And maybe, it was something that I needed. I have always believed God can heal but I never experienced it until I allowed Him to.
This Bible verse speaks clearly to me now: And He said to me, “My grace is sufficient for you, for My strength is made perfect in weakness.” Therefore most gladly I will rather boast in my infirmities, that the power of Christ may rest upon me. Therefore I take pleasure in infirmities, in reproaches, in needs, in persecutions, in distresses, for Christ’s sake. For when I am weak, then I am strong. 2 Corinthians 12:9-10
We received a lot of support from our friends, at church and at my husband’s workplace. They prayed for us, they visited us, and they talked to us. It can be very lonesome when you go through hardships everyday and you have no one to pour it all to. There were a couple of times I misunderstood my husband’s silence as not caring enough. As a mother and my son’s main caretaker, I was guilty of all the negative emotions: fear, embarrassment, hurt. I would back off from any appointments. I preferred to stay inside the house because I could not keep up with the questioning stares. But my husband never gave up. He was the strength God gave to our family. He would remind me, “We are into this together”. He tried so hard to make everything as normal of a life as possible, especially for our eldest daughter. So even with my son’s skin condition and the many tough nights we battled, we did our best to do the same normal things that we used to do. We attended church regularly, did community service, went on trips and races (while pushing the stroller) and at the same time avoided things that triggered our baby boy’s eczema.
E is now a healthy-looking, active and mischievous little boy. He turned 2 years old this month and each opportunity I get, I praise God for his healing. Even more so, I am grateful that during those lowest times, God has proven Himself again and again that He cares. I don’t know how it is to live without Him. He truly is our everything and I can’t praise Him enough. Our little man still suffers a few itch here and there but his condition is about 90% less severe than what it used to be. As for those of you who may have questions regarding this condition, I have a follow-up post as to the things we did to help lessen his discomfort. Some of those things may not work for everyone but in our case, it helped alleviate the severity of his condition. Thank you for reading this long post. If somehow this story gives you a little hope as it is my sole purpose in writing this story, I pray that you will keep that hope until you find the solution to your concerns. Let me assure you that God is really good and He has your best interest in mind.
Hang in there,