Wednesday, September 29, 2010

June 30, 2008

"OK Steph, it's time to push."
I took a deep breath and Mike and the nurse held my legs as I pushed with all my might. Thinking back, I don't remember how many times I pushed or how long that part of Ava's delivery lasted, but she was born at 1:04 pm during a very uneventful delivery.
"What is it...what is it? Boy or Girl?" I said through tears.
"A perfect little girl" replied the doctor.
I couldn't help but laugh as I cried...I swore that Ava was a boy. My pregnancies were SO was impossible that this baby was a girl. She fooled me for the entire 9 months! But, if I must admit, I was thrilled to have another little girl!
On the other hand, I was disappointed in my's usually right on...but it wasn't this time. Nor would it be again.
Ava was an exact duplicate of Zoe when she was born. Beautiful angelic little faces that looked months old as opposed to hours old, incredible amounts of thick black hair, and these adorable little hands and feet. Both of them were amazingly perfect. But with Ava, something wasn't quite right from the beginning.
We spent most of that first day trying to get Ava to take a bottle. (I couldn't breastfeed due to medications I was taking.) She just didn't seem to have any interest in eating. I figured that she was new and tired and her appetite would increase over the next few hours or even days. We had a million justifications for her lack of desire.
That night, my mom and I "fed" Ava and hunkered down for the night at around 8pm. The nurse woke me around 4am when she came in to do vitals and check on Ava.
"When was the baby's last feeding?" the nurse casually asked.
"8 pm," I replied.
The nurse looked confused. "No, what time did you feed her during the night?"
"I didn't, she's been asleep since I fed her at 8:00."
In a way, I was pretty excited that she had slept so long and attributed it to my swaddling technique. This baby was going to be a breeze. She was already sleeping 8 hours...what more could I ask for?! After all, Zoe left the hospital sleeping 5 hour stretches at night...I must be doing something right!
The nurse, almost angry, said, "You MUST feed her EVERY 2-3 hours! She's gonna start having blood sugar problems...she absolutely CANNOT go that long without eating!"
I think I kinda chuckled to myself as the nurse insisted I wake Ava up and feed her. When she left the room, my mom and I joked about never waking a sleeping baby, "fed" Ava through her sleep-induced haze, and went back to sleep ourselves.
The rest of our stay went about the same. Ava would be awake for short periods, "eat", and then be sound asleep for hours at a time. The next few nights she continued to sleep long stretches, and I found myself unconcerned...actually the amount of sleep we were all getting. I kept patting myself on the back for having "the right touch" when it came to getting babies to sleep.
Once again, my intuition was failing me. How did I not see what was going on? Where was my mommy instinct that I have always relied so heavily on? My brand new baby was sleeping insanely long stretches and all I could do was be excited at how "easy" she was going to be. She was slowly and methodically starving herself...and I didn't see it happening. I didn't notice.
Why didn't I see it?
Looking back now, I get angry at the mom I was during those early days of Ava's life. My common sense was gone and I didn't want to disrupt our easy and peaceful transition into life as a family of 4.
I often wonder...did I sense a problem and chose to ignore it? If that were the case, I don't think I could ever forgive myself. But I really don't think it occurred to me that something was wrong. I think I was in that euphoric stage of early motherhood. I was busy with my newborn and struggling to make my toddler feel loved and important during this huge transition in her life. We just went about living life...the best way we knew how.
But all through that first month, the battle of our lives was slowly brewing in the background. How could we begin to fathom the fight we were about to undertake? We had no idea how much our lives were about to change.
Soon, we would be fighting to save our daughter's life...and we would do it almost completely on our own.

Saturday, September 25, 2010


Have you ever had to hurt your child?
I know we've all accidentally pinched their skin in a buckle... or stepped on a toe when they're hanging on our legs while trying to get dinner ready. How many times have I bumped into one of the girls and knocked her down? I think the list goes on and on...and our guilt is endless.
Our purpose in life...our ONLY purpose in too protect these amazing little beings. We feed and water them, clothe and house them, and are prepared to violently protect them at any cost. They are pieces of us and our basic instinct is to keep these babies safe. I think most parents would do anything in their power to avoid having their child EVER feel pain.
So I frequently ask "Why?"
Why do I have to repeatedly and deliberately hurt my baby? Why do I have to live with the guilt of inflicting this pain on her? I lay in bed at night and hear her sweet little 2 year-old voice in my head... "Mommy, NO! Mommy, STOP! Mommy OWIE!" I hear her sister saying, "I'm here Ava, hold my hand!" and I wonder how this affects innocent Zoe.
I ABHOR granulomas! It's the nasty tissue that builds around Ava's g-tube site and pushes up against her "tubie". It is raw and painful and causes the feeding tube to become tight and irritated. Every tubie-mommy fights a daily battle against it. Sometimes the tissue quiets down and stays under control...sometimes, if you let your guard down, it comes back with a vengeance.
We are in the vengeance stage. It's a daily fight and it's not won easily. In fact, right now I feel like I'm losing the battle.
Ava knows it's coming. She knows that after her bath, I'm going to remove her gauze and then hurt her. She starts telling me, "No!" and grabbing my hands the minute I lay her down, wrapped snug in her towel. She sees the silver nitrate stick and knows that I'm going to hurt her.
Silver nitrate is a caustic substance that actually burns her skin...literally BURNS her! I have to run this stick on the granuloma (which already hurts) and BURN it off! I have to do it every night until it gets back under control. I have to burn off enough so that more of the granuloma comes off than builds-up over the next 24 hours. It HURTS and it makes her cry...ALOT!
I don't have to use the silver nitrate all the time, I can usually keep the granuloma tissue under control...but this time, it has gotten away from's pretty big and I'm struggling to get rid of it.
She tells me throughout the day that "tubie hurts, Mommy"...but to help her, I have to hurt her...and every time I do it, it feels like a piece of me is being burned too.
I tell her that if she'd just eat...if she'd just eat we could take "tubie" out and the pain would go away. But she's 2...sometimes her eyes have this sadness when I tell her if she knows...but she doesn't know how to fix things. It's as if she's looking to me for the answers and pleading with me to help her. It's devastating to me to admit that I don't know how.
So all I can do right now is just hold her tight, rock her, and wipe away her tears as the silver nitrate sears through her delicate skin...and wait for it to stop hurting.