Life of a Fire Wife

Krissy’s Story

Moms don’t like to admit they have a “favorite”, and I really don’t have a favorite.  Each one of my kids has a very special place in my heart.  Kevin is my first-born and the only one who didn’t look at me and scream when he was born.  Katie was my chubby little girl and so far is the most career-driven of my kids.  Kenny is ultra serious and has his Daddy’s big dimples that make me melt.  Krissy had a bad start, and consequently took a lot more energy than the others.

Kristen Marie (I’d still like to change her middle name) was born eight days early due to Mommy having pre-eclampsia (again) and her kidney’s not working so well.  Everything seemed fine until about 3am – about 12 hours after she was born.   The pediatrician woke me up to notify me that she was in the NICU.  She was having trouble breathing and they didn’t know what was wrong yet.  It was another 6 hours until I could see her again – with a tube down her throat, IV’s, monitors and bili lights going.  She had a large lump on the back of the head, her oxygen levels dropped every time she was fed, and she was jaundiced. I thought I would pass out right there in the NICU.  It was everything I could do not to grab her and run away. I just couldn’t stand seeing my baby like that.

A hellish four days later (after going home without my baby) she was discharged on Easter Sunday.  She had learned how to suck,swallow and breathe at the same time, the jaundice had cleared, and they thought the bump on her head was just a hematoma and would go away in time.

Only it didn’t go away.  Though Krissy had weighed a healthy 8 lbs at birth, she still only weighed about 10 lbs by June when we were sent for an MRI. She was a very unhappy baby, and hated laying on her back.  I think her head hurt her a lot.   The neurosurgeon we saw felt it was a hole in her skull with brain tissue protruding through it.  (A meningocele – a neural tube defect)  He wanted to perform surgery to remove the brain tissue and patch the hole in her skull.  I just didn’t like his blase’ attitude about he whole thing.  He was not the least bit comforting.  His attitude about it gave me a bad feeling, so I called our insurance company and told them I’d like a second opinion and told them I wanted to take her to see Dr. Muhonen at Children’s Hospital in Orange County.  Surprisingly, they didn’t argue, and that made me feel a lot better.

Johnny was on a fire assignment (naturally) so Katie and I trekked to CHOC with little Krissy and a LONG list of questions for the doctor. That was a Tuesday.

But after reviewing her MRI, the Doctors at CHOC felt it wasn’t a meningocele.  They felt it was cancer – sarcoma.  They didn’t think her chances were very good.  And even more shocking – I didn’t fall apart.  Oh sure, I cried, but I also got down to the business of doing everything I could for my baby.

Since Krissy and I didn’t have the same blood type, and the doctors wanted us to do directed blood donations, I had to get Johnny off the fire, and round up his Mother as well, since they had the same blood type and AGAIN make the drive to CHOC to get Krissy’s lab work done for a type and cross and donate blood for her surgery.  That was Wednesday.

Thursday I argued with the insurance company because they wanted us to take her to another doctor and have the surgery done locally.  I’m sorry if you like Loma Linda Hospital, but I felt that since ONE of their doctors had already misdiagnosed Krissy I wasn’t going to go within ten miles of that place EVER AGAIN.  In my world, you don’t get a second chance when my daughter’s life is on the line.

By Friday I think I had lost ten pounds.

On Saturday Krissy was baptized, which created quite a bit of controversy at my house.  Johnny’s parents are Lutheran.  I am technically Presbyterian, but the Pastor at our church had been transferred and I didn’t know the new one.  So my BFF Anna arranged for our long-time friend who is a Catholic priest to do it for us in a private ceremony.  That didn’t go over well.  Johnny’s parents weren’t sure they could come since Dad was playing golf.  His sister and husband weren’t sure they could come since it was their anniversary.  But that’s another post…..

Sunday my friend performed reiki on her.  I figured if it didn’t hurt her, what’s the harm right?  Truthfully, I would have sacrified a small animal if it meant saving my baby’s life.  What Mommy wouldn’t?

On Monday Krissy and I checked in to CHOC and Johnny into the Ronald McDonald House.   That afternoon she had another MRI and the doctors were confused when they came to talk to me while I was holding Krissy in the recovery room.  It seems the lump looked totally different on the second set of films and they really didn’t know what they were dealing with at all, and wouldn’t until her surgery the next day.  Comforting on the one hand, but scary as hell at the same time.

The surgery was expected to last several hours, and as they wheeled our baby down that hall to surgery I thought my heart was going to break.

I don’t know exactly how long it was, but it didn’t seem like it was very long.  Dr. Muhonen took us into an exam room and told us what he had found.  He even brought a Polaroid.  Not many Mommy’s have had the pleasure of seeing their child’s skull, but I have!  I have also seen her brain on the MRI films, but I digress…..again.

Krissy had a hemangioma, which is like a big knot of blood vessels.  It caused a hole in her skull.  Hemangiomas are pretty involved, and since they were expecting cancer they weren’t prepared for what they found.  They cauterized the mass, placed a collagen cap over the hole in her skull and closed her back up.  The risk of bleeding outweighed the risk of leaving it alone.

The change in Krissy when she finally woke up after the morphine wore off was amazing.  She had always been a very cranky and unhappy baby, but when she woke up she really looked like she wanted to sit up and say, “WOW!  I feel a LOT better now!”

Krissy is five (almost six) now and a star student in her class.  It took her a while to catch up developmentally and in her growth.  (At 1 year old she only weighed 17 lbs)  But now except for a REALLY big scar on the back of her head you’d never know there was anything wrong with her.  But if asked, she’ll tell you that she has a lot of money in her head.

 And THEN Mommy fell apart.  I lost a LOT of weight without really trying and then my hair started falling out.  But that’s how it works when you’re a Mom.  You hold it all together until the crisis has passed and then and ONLY THEN do you allow yourself to fall apart.

And that first neurosurgeon we saw??  He no longer has a medical license.  It seems he didn’t have the best judgement or surgical skills, and it was revoked.  Just more proof that when a Mommy has a feeling about something she is usually right.

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2 thoughts on “Krissy’s Story

  1. Dianna - (Nana) on said:

    Why would you want to change her middle name? Wasn’t she named after your dear old aunt?

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