Monday, December 6, 2010

A Loss to Say Much Else

Sometimes I find myself practicing Radical Acceptance and I can cope with this. Then there are times like now.

BabyM and BabyR had the flu (respiratory) a few weeks ago. With the help of our primary care physician we made it through that. Then a week ago I found myself in the ER with BabyR for IV fluids. We thought it was an FPIES reaction to something in dye free CVS brand “Benadryl” – then Mari started vomiting the next day and we knew it was a bug. The steps I took to make sure our doctor knew this was an FPIES reaction really made this kind of comical in a way. Ultimately I think it was a stomach flu and an FPIES reaction for BabyR but I am not going to go into all my reasoning – I am just too tired. So back to the bug, the kids have been sick for the entire week. Although they have markedly improved, they continue to vomit once a day for the past couple of days – which brings us to today.

We had an appointment with the GI doc – Dr. Fancy Pants. I am not so fed up with him at this point. In fact, I feel that he has proved himself recently. Anyway, BabyM has FALLEN of the charts in weight. BabyR is now falling. They are 22 months old and 19lbs. 2oz and 24lbs. respectively. Bottom line – he told us that because of their weight (particularly BabyM) it is likely that they will be sick all winter and continue to fall in percentiles. He gave us 4 weeks to try and get BabyM REALLY gaining before intervening with a nasal feeding tube. I have NO idea how anyone is going to keep a nasal tube down a toddler’s nose all day every day. When I asked the doctor about this he said we may have to put in a g-tube…surgery to put a feeding tube directly into the stomach.

So here we are – this is ONE of the places I have really feared being in.

Here we are. I am really at a loss to say much else.

When I got home opened my email to find these words from a friend:


As I started to pray for you and your family yesterday, I couldn't get a word out. I just started to cry. I feel all your pain...and your family's too. After so much crying…peace came over me. I know that no matter what happens, it will be hard, it will be painful, but will be ok. The rain will fall (blessings) and the sun will shine again.

I am with you.

At this moment these words are all I am hanging onto.


  1. I love you Nichole, I know your heart is breaking, as this has been a fear on the horizon since the beginning. I am here, and praying for all of you. All of my love

  2. I love you Nichole. I have no idea of what you are going through right now and the torment of watching your children go backwards in health...I know that God is in control. I know how much I would have liked to choke someone that said that to me almost seven years ago...I know how much even the strongest Christian can lose their way when things are crumbling around you. Lean on us. Lean on your family, your friends, Christian online support groups, whatever you have to do to stay STANDING STRONG in your faith. Someone once told me the day Satan loses our soul to Jesus, he changes his battle plan...he has lost us forever, but he can separate us from God, make us miserable, ruin our lives...and such is his goal. Remember when we are weakest to HALT. That is when Satan works his HARDEST to hurt us. HUNGRY, ANGRY, LONELY, and TIRED. Hm...I wonder what PERCENTAGE of your day you are AT LEAST one of those, Cousin?? Hang in there and don't be discouraged. Stay strong. Think of what you have already overcome in your life and remember that you are STRONG. I love you, Heather