Baby Days, Sleep Apnea and GERD

In the beginning, Boeboe slept allot. I had to wake her every hour to feed her. She was 2.4kg when she was released from hospital. Too small to be fed every 3 hours (without the IV to sustain her). I took her temperature every 30 minutes during the first few days. She was cold, but just borderline where I needed to take her back to the hospital. My instinct kept telling me she’s fine. After two weeks, she started to keep her temperature up. I started breathing. I stopped waking her at night every hour, and let her find her own routine. She breastfed about 21 times out of 24 hours. Boeboe was still very yellow. At 9 weeks, I had to subject her to a blood test again. Mr N got very upset and I had to console two crying babies. The blood test showed that she had the same liver disease that me, her daddy and Mr N have. Gilbert’s disease. It’s not a dangerous, life threatening disease. Our livers just struggle to release enough of the enzyme necessary to break down bilirubin in our blood. It turns us yellow, like jaundice.

Look at how yellow Boeboe is (here with Mr N)

Boeboe slept and fed. That’s all. She didn’t interact with us at all. I started to worry, but at just past 9 weeks, she smiled…:-) Shortly thereafter she laughed at the tinkling butterfly above her bath. We sighed in relief. There didn’t seem to be any brain damage because of the dying placenta.

One morning, at precisely 2 months of age, Boeboe was in her basket, fast asleep. I was in the kitchen eating breakfast when the sleep apnea alarm went off. I bought the alarm with Mr N’s birth. It was both a breathing and sound monitor. So once Boeboe came home, she slept on this monitor at night. And now it was screaming.

I ran to her crib, and she was stretching leisurely. Wide awake and friendly. I sighed in relief, my heart still bouncing in my throat.

Two days later, it happened again. This time it was 2 o’clock at night. She was lying dead still, not moving at all. I put my hand on her stomach, and she woke up with a start. She was white in the face, but breathing.

A few days later, it happened again. At 9am. It kept happening. Anything from 2am to 9am. It happened once or twice a night, 2-3 times a week. Sometimes she'd wake from the alarm, sometimes she'd be blue or gray in the face and only woke once I picked her up. We got stressed and tried to read everything we could about SIDS. The pead said she didn’t know why it happened, but we must never ever let her sleep on anything other than the breathing monitor. She believed it had saved her life.

At age 4 months, the apnea attacks stopped as suddenly as it began. For 2 months I went through hell. And now it was over. For 2 months, I could barely sleep. After every feed at night, I would cuddle her and put her down in her crib, on the monitor, with a heavy heart. I’d kiss her forehead and wonder if I’ll ever see her alive again. If this would be the last kiss she’ll feel from her mommy. If there will be another attack. If she won’t wake up from the next one. I laid awake, staring at the blinking green light that flickered with every breath she took.

Slowly me and daddy started to heal. Slowly, we accepted that the attacks have stopped. That we don’t have to fear anymore. Slowly we got rid of the stress we were living under.

Boeboe was a tiny, tiny baby. She was around the 3rd percentile on her growth chart. At age 1, she weighed 7.5kg. At 18 months, she weighed 8.3kg. She was still on the 50th percentile for her length, but her head was a little on the small side.

But overall she was doing well. She rolled over at age 4 months. She started to look around and reacted to her environment. She slept less and fed less. She didn’t want to sit, so we did physical therapy and at 8 months she sat alone. At 91/2 months she crawled on her stomach. Me and hubby went out for the night for the first time since her birth. Her granny watched her and Mr N for the evening. When I got home, she noticed me and got so excited to get to me, that she pulled herself forward by her arms. My love for her at that moment had no boundaries!

Then I fell ill. I had one infection after the next. Tonsillitis, farangitis, bronchitis, etc. Even Epstein Barr/glandular fever. It was a tough time in our lives. We knew something was wrong. Everyone suspected it was the breastfeeding, but I refused to believe that. Boeboe needed it. With her apnea history, I was desperate to keep her on breastmilk until age 2. I got better slowly, and Boeboe turned one. She has been crawling since 10 months (leopard crawling) and on all fours a little later. Mr N was also getting big then. He adored his sister, and she loved him completely. They played together every day. He never hurt her intentionally and felt awful when he got a bit too rough with her and she cried. He helped me with everything I asked, and kept quiet when she was sleeping.

When boeboe turned 15 months, the apnea alarm went off again. It happened again and again. We were so sad. And very worried. The good news was that she started walking at 14 months. Very unsure and wobbly, but we were proud none the less.

I fell ill again. This time I sat crying in the doctor’s office. Told her I can’t take it anymore. I’m a stay at home mom (SAHM) and I couldn't afford to be ill so much. The doctor referred me to an internist. A specialist. He did test after test after test. It came back with 3 problems. The one was that some receptors in my brain didn’t register changes in my body quick enough, which caused my dizzy spells. The second problem was that my Gilbert’s disease was confirmed. And for the third problem he wanted me to see a gastro-enterologist.

The GE did a gastroscopy and colonoscopy and confirmed the IBS (irritable bowel syndrome) I knew I had, and diagnosed me with GERD (gastric oesophageal reflux disease). He said the valve between my stomach and oesophagus didn’t work at all. It explained why I was nauseous all my life. Why I was always ill with throat infections. Why I couldn’t tolerate certain foods or drinks. Why I had problems swallowing, especially pills and dry food. Why I woke up every morning with a sore throat. It wasn’t post-nasal drip like previous doctors diagnosed.

I told the GE about Boeboe’s sleep apnea attacks, and he confirmed my fears. It could be silent reflux. Even though she rarely vomited. We both got tubes pushed down our throats to do a 24h ph-balance study of the contents in our oesophagus’s. It’s hell. Boeboe screamed and I felt horrible. She went through this 18 months ago. How can I put her through it again? What kind of mother am I?

Boeboe looked rather cute with the little computer hanging from her tiny frame. She left it alone. Didn’t press the buttons. Didn’t pull the tube out of her nose. I was relieved.

Our results came back. I had a count of 31 (it has to be under 14). It’s reflux. GERD. I also only have 20% swallowing function left. No wonder I struggled so much!

Boeboe’s count was sky-high at 75!!! The highest the doctor has ever seen in such a young child. He believed it definitely explained her sleep apnea. Why hasn’t the pead mentioned this as a possibility?

Her reflux was especially bad between 1am and 6am accordingly to the results. It explained why her apnea episodes were always in the early morning hours. We both got put on medication to control the amount of acid in our stomachs.

I requested that my son, Mr N also got tested because of his dietary issues. He was 4, old enough for a gastroscopy with PH study.

The results were that his valve was also not working at all. His ph count was 28, and he too got put on medication. Suddenly his eating improved and he started to pick up weight. His bony shoulders got a bit rounder.

Boeboe slept better, looked healthier and had more energy. And after another month of being on the meds, her apnea attacks stopped completely! Never to return again.

My throat wasn’t sore anymore every morning when I woke up. I didn’t get ill anymore. I felt healthy and better than I felt in all of my 30 years. Life was good.