I am going to share a story with you about reflux/sleep apnea. If you are a chronic worrier or a parent of a newborn, you might not want to read this story. However, I want to tell this story so that my readers can better understand my obsession with checking on Porgie while she is sleeping.
Porgie was a very difficult newborn, especially for a first-time mommy. Almost from birth, Porgie spit up large amounts of breast milk/formula. If I feed her a 4 ounce bottle, at least 2 ounces of that bottle would end up on my clothes and furniture. Also, she would arch her back and cry when I put her down after a feeding. Worried that something was wrong, I took my baby to the pediatrician's office. Porgie was diagnosed with reflux.
In order to alleviate her discomfort, I had to burp her after every 1/2 ounce, sit her upright for at least 30 minutes after each feeding, let her sleep on her side or tummy, and feed her small, but frequent meals. Porgie was obviously miserable when you put her down to sleep. She would often wake up crying after only 10 to 20 minutes. No one was getting much rest at my house.
When Porgie was about a month old, her reflux caused her to experienced an ALTE (apparent life threatening event). I was laying in bed one morning, and Porgie was curled up next to me asleep. John had just left for work. It was about 5:30 in the morning, and I was trying to fall back to sleep. I was in a semiconscious state, listening to Porgie breathe. I heard her take in a deep breath and then there was silence.
I sat up in bed and grabbed Porgie. She was stiff as a board. She wasn't breathing. I started screaming her name and frantically patting her on the back. No noise, just silence. I stood up and started bouncing her vigorously. It almost seemed like she was choking, so I shoved my fingers in her mouth. There was nothing in her mouth.
As I ran into the living room to call 911, a million thoughts were racing through my mind. Maybe 40 seconds had passed, but I was certain she was going to die. As I grabbed the phone off of the couch, I heard Porgie gasp for air. I sat down and started patting her back again. She started crying. It was a beautiful sound.
Porgie was hysterical. There was nothing I could do to calm her. She cried and cried and cried. I sat in the rocking chair with her, while she quivered and shook with fear. I kissed her over and over again and I cried too. Porgie cried herself to sleep in my arms.
I was a weeping, sobbing wreck. I didn't know what to do or who to call. I considered taking her to the hospital, but she seemed to be okay. What could they do for her now? I decided to wait until her doctor's office opened, unless she started acting funny again.
From 6:00 to 8:00, I watched Porgie sleep. I kept one hand on her abdomen the entire time. Feeling her chest rise and fall with each breath was comforting.
At 9:00, I rushed Porgie to the pediatrician's office. They checked her oxygen saturation and asked about a million questions. The doctor believed that this episode was triggered by Porgie's reflux. She explained that sometimes milk can back up into a baby's throat, creating a bolus. The milk doesn't have the force to be vomited out, so it just sits in her throat. This bolus prevents the baby from breathing.
To make an extremely long story short, the doctor decided to place Porgie on an apnea monitor. Before Porgie went to sleep each night, I placed two electrodes on her chest and hooked her up to the monitor. I would often be jarred awake at 4:00 am to the sound of the alarm beeping. With every beep of the alarm, my heart would jump into my throat. I lived in a near constant state of fear.
Porgie had a few more episodes similar to the first, but nothing nearly as dramatic. By the time Porgie was four months old, the doctor determined that she was no longer having the reflux/apnea episodes and the monitor was removed.
Although 4 months have passed, I still worry excessively about Porgie at night. I check on her at least 3 times before I go to bed. Then I usually get up at least once during the night to check on her again.
The fear that my baby might stop breathing is overpowering.
10 comments:
oh my god my heart just caught in my throat. THANK GOD you were there when that first situation happened. god oh god christy i cannot even imagine suffering through what you did. i would be a neurotic mess. oh wait, i am already a neurotic mess...i would be an intolerably neurotic mess.
i have said this before and i really do mean it: if something happens to mikaela i am "outta here". i could not handle losing my child. the thought is too completely overwhelming for me to comprehend. as i know it is for you too. i know the fact that porgie no longer has the bouts of apnea is not cause enough to stop worrying. you never stop worrying about your children.
does porgie still suffer with the reflux??
oh my gosh that is just so frightening!! I was almost in tears reading that! I am so glad that she is ok!!
yep, my heart caught in my throat reading that, too, Christy. O also has reflux (still on Zantac at ten months old) and i had no idea it could be related to apnea or breathing stoppage. me, who thought i'd researched all the horrible things that could possibly happen. just goes to show...thanks for the info, i think. :)
that episode sounds terrifying and i feel for you...and understand completely why you check on Porgie while she sleeps. i've actually had to temper those instincts in myself because for a period of time they were spiralling out of control and i was interrupting O's sleep...dh sat me down hard and said "this is about you, and about Finn (our firstborn, who died as a newborn - he was a preemie), and not about O. let him be, let him learn to sleep." and i thought, at the time, that he was being quite reasonable.
now i read your story and wonder if perhaps i wasn't right after all? :)
we've talked about putting a little webcam in his room so we could watch him sleep, but haven't quite gotten around to it yet.
OH MY GOD. That sounds so terrifying! I totally understand why you would be obsessed with her breathing. I mean, it's amazing you're not totally insane at this point. But the risk has to be gone at this point, right? She's so old? See, co-sleeping IS good! May such a scare never happen again.
Tiffany,
Porgie's reflux is much better now. However, last Tuesday I woke up at 4 am to the sound of Porgie choking. It brought back all of my fears. I haven't stopped obsessively checking on her since.
Bon,
Porgie's experience with reflux is not common. I am sure O. will never experience anything like this. The doctor ordered the apnea monitor because she wasn't certain of the cause. Porgie could have stopped breathing because she had sleep apnea or because of the reflux.
During the episode, I kept thinking that Porgie was choking. Her body was stiff, not limp. I honestly believe that it was caused by the reflux.
Sorry to make you worry. That was not my intention. BTW, I think the webcam is a great idea.
Eva,
With each passing month, Porgie spits up less and less. You're absolutely right - cosleeping is good. Remember, cosleeping is the friend I love to hate.
I'm glad that everything worked out ok! Gosh, that'd scare the hell out of me.
It's good to hear that she's spitting up less and less. K was on Zantac until his 9 month appt and has been doing pretty good so far. Although, we may have to re-visit it - the verdict is still out.
That is so terrifying! I wouldn't stop worrying either...
Holy guacamole! You must be a nervous wreck.
Assvice alert!
Have you tried having her sleep in an infant seat? I've heard in many places that sleeping reclined rather than prone is good for reflux and apnea.
Christy,
my infant daughter (2mos.) was recently diagnosed with reflux and prescribed Zantac. I was OK with the diagnosis until I discovered my infant daughter sitting in her infant car seat wide eyed, glazing stare, arms flailing, struggling to breathe. She was choking! This was 2 hours after her last breast feeding. I grabbed her and immediately began back blows. Several moments later she came to. Very apprehensive and unsure whether to cry initially. Although I did. I called the pediatrician who referred her to a pediatric gastroenterologist. Reflux was confirmed. HOWEVER... The choking, unable to breathe episodes was defined as ALTE (Apparent Life Threatening Event sydrome.) Reflux (Gerd) is a common cause. Looking back since birth, my daughter has had three ALTE episode which required physical intervention to get her to breathe. She is having a apnea monitor delivered tomorrow. I understand those sleepless nights. Ask your pediatrician about ALTE.
My grand daughter was admitted to hospital at 8 days old after having a life threatening event. When we first got there the nursing staff didn't take us seriously because she is a big heatlthy looking baby (was 9 lb 9.5 oz at birth), plus her breathing had returned to normal and she had, by the time we got her to hospital her oxygen levels were over 95%.
After being in hospital 2 weeks she was diagnosed with reflux, then another 2 weeks of observations and tests, sleep apnea as well. Then they put her on oxygen.
She finally came home when she was 2 months old. She has an oxygen tube in both nostrils and is connected to an oxygen bottle 24/7. This is suppose to keep her breathing. She goes back to the sleep disorder unit after she is 4 months old.
Every time that I visit my daughter and granddaughter I check to make sure that Imogen (my granddaughter) is still breathing. I know that my daughter is a loving caring, capable mum, but things can go wrong so quickly and without warning. I'm always scared that I'm going to get a phone call that Imogen has stopped breathing. On the one hand I look forward to the day when she no longer needs the oc\xygen, but then I'm scared that when she's taken off the oxygen that she'll start having sleep apnea again.
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