I'm trying to help others understand what a BIG deal our food issues and reflux are. So here is where I am at . . .
It starts slowly: You hear a rustling beside you and know it is beginning. Soon she is tossing and turning constantly, trying to get into any position that may make it hurt less. You've seen her arch her back so far back she is sleeping like a backwards C. Sometimes there is moaning. Wimpering. Crying. On bad nights, full out screaming. Then the coughing begins. Every few minutes there it is, the weak cough cough of someone with acid in their chest. Occassionally she starts to gag. Your pulse quickens, your heart pounds and you quickly turn her over to make sure she doesn't choke. The other night when you did this she took such a big gasp of air afterwards you were thankful the lights were off - you didn't have to see her struggle to breathe, to see how close you may have come this time. It's a little bit after midnight, as always, and you wonder why she can often sleep peacefully those first few hours. Sleep is over for you now, the sleep wake cycle has begun and all you can do is try and help her get comfortable. And when that fails, rub her tummy or her head and tell her you love her. This night you will again pray silently and beg God to please end her suffering, to please let you all get some sleep.
Other nights it's not just the reflux, but stomache aches too. It seems so unfair that she has to suffer in more than one way. Although it seems so unfair that someone so little, so helpless, has to suffer at all. Now all you can do is hope that she gets enough sleep to not be unbearable in the morning. Morning is often her best time, evenings are so unpredictible. But for whatever reason, regardless of how much sleep she has had, we often get a good morning.
Evenings can be deceptive. It looks like everything is going well. She is playing, smiling. And then it is time to eat dinner. Screams erupt after she takes a bite of her favorite food. There is no saving this evening. She is hungry and wants to eat, but it hurts too much. You look at the clock and realize that there are still 2 more hours before you can get her to go to sleeps - everytime they will feel like the longest two hours of your life.
The first seven months she cried 24/7. Thank goodness that is no longer the case. We get several good days a week. You learn to be grateful for little favors. For her episodes of pain are torture for everyone. The light days just involve a lot of wimpering and moaning and coughing. On the worst days she will roll around on the floor not wanting anyone to touch her and cry. In the background Ri says, "Can't you get her to stop screaming?" But I can't, I can't get her pain to stop. Even on a severely restricted diet and a maximum dose of medicine - I can not get her pain to stop. The worst thing a mother will ever face is the inability to help her hurting child. All I can do is wait for this episode of pain to end and hope that tomorrow is a better day.
The phone has stopped ringing. No calls to ask how you are doing - they know. You're tired. You're cranky. You're sad. You're mad. You're scared. And apparently you are annoying. You are no longer the sympathetic heroine to your own story. There are no offers of help. You can't help, how could anyone else possibly help? There is just the never ending mystery: how can I make today be a good day for her, for us? And what do I do if it isn't? Because in reality, there are too many days that aren't. And every night. Night time is always the worst time. Ri is the only one who has slept for more than almost 20 months now. On the best nights, it seems we are lucky if we get more than 4 hours of sleep - all broken up throughout the night.
I remember reading once that babies and kids need a lot of sleep because during sleep a hormone is released that helps them to grow. Maybe this is why she isn't really growing, she isn't sleeping enough to have that hormone released. Of course it could also be all those meals she just can't eat because she can't choke it down through the pain.
The doctors are always trying to figure it out. They give it names. Acid Reflux. GERD. Food Allergies. Food Intolerances. Could it be EE? They propose tests. Blood Draws. Stool Samples. Skin Pricks. Endoscopes. They try to give it another name. It doesn't matter what you call it. It is always our waking nightmare.
Karen
It starts slowly: You hear a rustling beside you and know it is beginning. Soon she is tossing and turning constantly, trying to get into any position that may make it hurt less. You've seen her arch her back so far back she is sleeping like a backwards C. Sometimes there is moaning. Wimpering. Crying. On bad nights, full out screaming. Then the coughing begins. Every few minutes there it is, the weak cough cough of someone with acid in their chest. Occassionally she starts to gag. Your pulse quickens, your heart pounds and you quickly turn her over to make sure she doesn't choke. The other night when you did this she took such a big gasp of air afterwards you were thankful the lights were off - you didn't have to see her struggle to breathe, to see how close you may have come this time. It's a little bit after midnight, as always, and you wonder why she can often sleep peacefully those first few hours. Sleep is over for you now, the sleep wake cycle has begun and all you can do is try and help her get comfortable. And when that fails, rub her tummy or her head and tell her you love her. This night you will again pray silently and beg God to please end her suffering, to please let you all get some sleep.
Other nights it's not just the reflux, but stomache aches too. It seems so unfair that she has to suffer in more than one way. Although it seems so unfair that someone so little, so helpless, has to suffer at all. Now all you can do is hope that she gets enough sleep to not be unbearable in the morning. Morning is often her best time, evenings are so unpredictible. But for whatever reason, regardless of how much sleep she has had, we often get a good morning.
Evenings can be deceptive. It looks like everything is going well. She is playing, smiling. And then it is time to eat dinner. Screams erupt after she takes a bite of her favorite food. There is no saving this evening. She is hungry and wants to eat, but it hurts too much. You look at the clock and realize that there are still 2 more hours before you can get her to go to sleeps - everytime they will feel like the longest two hours of your life.
The first seven months she cried 24/7. Thank goodness that is no longer the case. We get several good days a week. You learn to be grateful for little favors. For her episodes of pain are torture for everyone. The light days just involve a lot of wimpering and moaning and coughing. On the worst days she will roll around on the floor not wanting anyone to touch her and cry. In the background Ri says, "Can't you get her to stop screaming?" But I can't, I can't get her pain to stop. Even on a severely restricted diet and a maximum dose of medicine - I can not get her pain to stop. The worst thing a mother will ever face is the inability to help her hurting child. All I can do is wait for this episode of pain to end and hope that tomorrow is a better day.
The phone has stopped ringing. No calls to ask how you are doing - they know. You're tired. You're cranky. You're sad. You're mad. You're scared. And apparently you are annoying. You are no longer the sympathetic heroine to your own story. There are no offers of help. You can't help, how could anyone else possibly help? There is just the never ending mystery: how can I make today be a good day for her, for us? And what do I do if it isn't? Because in reality, there are too many days that aren't. And every night. Night time is always the worst time. Ri is the only one who has slept for more than almost 20 months now. On the best nights, it seems we are lucky if we get more than 4 hours of sleep - all broken up throughout the night.
I remember reading once that babies and kids need a lot of sleep because during sleep a hormone is released that helps them to grow. Maybe this is why she isn't really growing, she isn't sleeping enough to have that hormone released. Of course it could also be all those meals she just can't eat because she can't choke it down through the pain.
The doctors are always trying to figure it out. They give it names. Acid Reflux. GERD. Food Allergies. Food Intolerances. Could it be EE? They propose tests. Blood Draws. Stool Samples. Skin Pricks. Endoscopes. They try to give it another name. It doesn't matter what you call it. It is always our waking nightmare.
Karen
Karen
