My son was born the beginning of June at 34 weeks and 2 days, spent 12 days in the NICU. I thought that was going to be the hard part. He was an angel baby for the first three weeks. Slept 3-4 hours , would wake up take a bottle of pumped milk and go back to sleep. Around his due date I knew something was off, painful gas, not wanting to be put down, crying, not sleeping…
I told his Dr reflux and she brushed me off. Around 7 weeks he had blood in his stool, they brushed me off.. 8 weeks (july) still blood and now screaming every time I put him in a car seat. Finally someone listened about the blood and gave me a referral to the GI for end of august.
I started cutting things out of my diet. We tried the natural route, cranial sacral work, digestive aid, gas drops, gripe water, strict diet.. September he went on ranitidine. I was told I had over supply because I was pumping too much so when he switched to breast at 11 weeks it was too much and I should block feed. He would scream every time he had to pass gas or poop, even if in a sound sleep. He would wake up every 10-30 min on some good nights 30-90. Randomly I got a couple hours.
I started Ted the beginning of October. I was “sleeping” sitting up in a chair with him. I had to wear him all day long as I worked as a nanny 48 hours a week. He wasn’t latching correctly; it felt like glass was getting pulled from my nipple. Finally discovered his tongue tie at the mid of October (4.5 months) from pushes from moms in this group.
He reacted to the Tylenol. We tried 1st brand pharmacy compound, which made things worse. So many times I thought I had figured it out! Thought I was through the worst of it. By the end of October he still didn’t sleep, cried in the car, had bad gas, I had been on TED 4 weeks..
I thought there was improvement but then it still was never that good. I would only leave the house to go to work because I couldn’t stand the screaming in the car.. and we tried everything. Three different car seats, mirror, no mirror, toys, music, talking, sitting in back with him, more clothes, less clothes, not feeding right before we left, he just kept screaming. It was a very isolating and difficult time. I felt crazy, and it didn’t seem that Doctors helped.
Everyone had a different idea of what could be wrong. I felt like this group was my life line.. the only place I felt like others knew what I was going through.. in the beginning of November I went “rouge;” I figured I had tried everything else, so I need to try proper dosing of a PPI and see if it is reflux.
I got OTC nexium because my dr didn’t agree with this dose. I did it myself with apple juice. But my son was a comfort nurser (that’s why he nursed all night a long). So, it was really hard to know if he had an empty stomach. Tummy care Max helped a lot when it finally came out. We had an upper GI done end of November and it came back normal. He did reflux during it, but they said that was normal. The GI told me his mucous poops were normal.
I felt like every time I went in they would tell me this is when reflux is at its peak. I stopped wanting to waste my time at Drs. I just kept cutting more and more out of my diet. He was always congested, would breath loudly and snore. I thought it was reflux. They wanted me to try him on solids in December and would fail everything: Avocado, rash and spitting up, carrots, spit up all night, screaming for both.. I questioned FPIES.
By the end of January, I was down to eating only chicken and carrots. I had cut one thing out of TED, one at a time, and realized I was using Avocado oil and he could not handle it. It was hard to introduce food to him and also into my diet, not ever knowing what was causing him pain. When he was 8 months (Feb) GI made me go to a nutritionist and she told me to try formula because of how stressful all of this was. Of course I was hitting my breaking point, not eating, never sleeping, going on 8 months, giving my kid’s meds on my own.
I tried two kinds and he refused bottles. Would take me an hour to get one oz in, and he would be up screaming all night. Nutritionist sent us to PT/ot at Seattle Childrens to have a feeding Evaluation. This appointment, the first week of March would be a turning point. She listened to him swallow and told me he had uncontrolled reflux, he was swollen and irritated and was barely swallowing. She was the first one that said that to me. I wasn’t crazy!
I then went above proper dosing in order to try to control the acid. I also realized I could eat the same exact thing for a week and some nights were awful and some were better. So, maybe it wasn’t all food related. I started adding stuff back into my diet. He was still struggling with solids. Feeding therapist sent me to an ENT, but it took 5 weeks for us to get in to him. He did a scope and said that damage is not as bad as he thought it was going to be for the symptoms we were having. I was still top 8 free.
He wanted us to have a sleep study. We had to wait 6 weeks to get in. Normally you have to wait 4 weeks for the results of a sleep study. But I got three phone calls the day we left the study. Anything above a 10 is considered severe apnea. He was an 87. His oxygen levels were 60% for 20 min of the night (total) . He woke up 122 times an hour. In the first hour and ½ he had 146 apnea episodes before they put him on oxygen. He was only in REM for 30 min. They had an oxygen tank at my house the next morning as they tried to squeeze us in for surgery.
Two weeks later, one week after he turned one, we went in for sleep surgery. They put him to sleep and sent a camera down to see what was causing the blockage. His adenoids were, as the surgeon said, “impressive;” they blocked his airway 100% falling back into his throat when in a deep sleep.
He had a adenoidectomy and a supraglottoplasty. I didn’t think things could get worse, but the 2-3 weeks recovery from this surgery was pretty awful. He reacted to the Ibuprofen or Tylenol and was having severe gas pains. Again, I thought it was from surgery. He started refusing all meds. All of this was made a little harder by the fact that my wedding was two weeks after the surgery. Lets just say I had to hold him during the ceremony and wear him during the reception.
But, that weekend things started to turn around. He fell asleep in his stroller and car seat for the first time (since he was tiny) I started eating what ever I wanted.. I wanted wedding cake! And I knew this was going to be the turning point for our family.. And it was. Because he would scream and freak out when ever I came at him with meds, we pretty quickly weaned off the PPI. He finally got a couple teeth and his hair started growing. He was able to sleep in his crib and not on top of me. He started being able to eat more and more foods. I was eating everything and still nursing. It was like we had a new kid.
We had a follow up feeding eval and she was amazed at how well he could eat, and his range of motion. She said with reflux as severe as his normally there are more issues and I did the right thing by not pushing solids on him when I knew he wasn’t ready. She said he still has reflux, but I am not putting him back on meds, since it doesn’t seem to really bother him 95% of the time. We had a follow up sleep study and he is now a 7.7 instead of 87. Still considered moderate apnea. That’s why he still wakes up 3-5x a night. But oxygen never went below 80%, spent 189 min in REM, and only had 43 apnea episodes all night. Huge, amazing improvements.
Most of the time he can go back to sleep on his own, after a few seconds. I did have to do some sleep training to break some of the habits that were created. Things still are not perfect but we have come such a long way. He is almost 18 months old. We enjoy being parents now. Looking back I wonder how we did it sometimes.
He had reflux and MSPI and then around 4-6months adenoids grow. He had the bad luck of having some that grew very large. This made reflux worse, because he would have to breath harder to get air. Also not sleeping obviously makes in hard for the body to heal and develop. He has proved he is fighter. I realize I will do anything for my son. I second guessed everything thing I was doing, I was told I had PPD and should go on meds.. but I knew I was just tired, and frustrated we couldn’t find answers. We will have to continue having sleep studies every 6-12 months to make sure it isn’t getting worse and he might have to go on a cpap machine around 3-4. He can eat most things, we stay away from dairy and he can not handle tomatoes and last week we realized no citrus. Colds and teething (he has 6 teeth now) cause serious flares. I think my husband and I appreciate and have more fun with him now because of how difficult the first year was. I put him in his crib awake at 7:30 and walk out. I can go out of the house if I wanted, have time to myself, it is amazing. I wondered sometimes if we would ever get here.