Saturday, April 19, 2014

A little background......

The granddaughter Fiona is off to bed, and I have some quiet time, so here's a little of her history.

She's nearing four, and at the risk of sounding like any grandparent, she's bright, insatiably curious, mischevious and full of fun. Active enough to exhaust a NFL linebacker, on the go from the moment she wakes at 6am onward. It's something of a miracle, and I don't use that term ever.

When the first ultrasound was done in my daughter K.'s first trimester, she called me very distraught. Very. It was determined that the forming baby had an giant omphalocele. In brief, that's the condition where some of the organs are outside the body, usually in the abdomen. It can include liver, stomach, bowels. It also means that the organs like the lungs and heart do not develop normally, they are not being held in place by an intact abdomen. They cannot survive a natural birth, a C-section is done. They have a high mortality rate after birth, and over 50% have other issues like cardiac and pulmonary defects. They also have a high chance of genetic defects.

In the next months, my daughter became an expert on the subject, using the research skills that made her a math whiz in school. Fiona was born with a portion of her liver extruding from her abdomen. Seattle Children's Hospital took over her care after birth at UW Medical Center. There are about 5 children's hospitals in the US that use a particular protocol called 'paint and wait', vs. a fairly quick closure of the opening. They put a dressing on it and let the body slowly draw the organ(s)back in, this method has a much higher success rate in many instances.

Omphalocele children often have an extended stay, weeks or even months in a NICU, Fiona was there a matter of a few days, and she was home in less than a month. The next year plus were a busy time for Kate and her husband Drew; caring for the opening while it healed and the liver slowly retracted.  By month three or so she was entirely tube-fed, first through a naso-gastric tube, later they put in a port in her abdomen to her stomach. A result of this, common among this group, is oral aversion. Sometime the child has to be tube fed for more than a couple years.

Fiona hasn't had a tube feeding now in 8 months. Today she gobbled cereal, snacks, a cheeseburger, ribs, mac and cheese, corn on the cob and ice cream. Grandpa is piling on the calories.

I'm glossing over a fair amount here; but on the scatter graph of how well these kids do over time, how many or few complications they have (small bowel obstruction is a common one, cardiac problems another), Fiona is an outlier.....the SCMC docs say they have no experience with one like her. Observing her in her daily life, you'd never know what her prognosis was before she was born.

She is a little miracle.

18 comments:

  1. And she has the most endearing smile/grin to prove it.

    You are a fortunate man, Mike, despite the woes in your life. Or, perhaps, because of them.

    ReplyDelete
    Replies
    1. Actually, not a lot of woes here. Got a pretty good life, and two remarkably healthy, great g'kids, and three great kids. Life's pretty good.

      Delete
  2. Some young spirits have extreme will.

    ReplyDelete
    Replies
    1. Will she has in plenty, mostly to bend the world to her wishes.

      Delete
  3. May she grow healthy and eventually old.

    ReplyDelete
    Replies
    1. And the same to you and yours, Steve. Thanks.

      Delete
  4. Replies
    1. Dunno about chills, but you get bonus points for having one of the weirdest (in a good way) blogs I've come across. Well-written and funny both.

      Delete
  5. That child also has a loving and caring grand-pappy! Great job on the dietary requirement, Mike!

    ReplyDelete
    Replies
    1. Thanks Bruce. The her eating is so much fun to watch, the oral aversion she had meant Kate and Drew spent a couple months gradually weaning her off the tube feedings, a lot of work. I just fixed her bacon and eggs.

      Delete
  6. I had to come back and read this a second time. I'd be touched by the good outcome for Fiona, regardless, but I also know a little about babies who start out in the NICU. My middle grandchild, now 6, was born 3 months early. He had no eyebrows, no nipples on his chest, and fingers like transparent matchsticks.The NICU doctors and nurses were amazing in caring for a little one not much bigger than a Coke can, and I can't say enough about their excellent care and concern. It is a miracle to observe how strong life can be. Like Fiona, you'd never know now.

    ReplyDelete
    Replies
    1. I totally agree about the NICU nurses, esp. the ones at SCMC. They deal with the ones on the very edge, and more often than not bring them back from the abyss.

      Delete
  7. That's fantastic. Having been through brain surgery with my younger son for a chiari malformation, I understand the fear and anxiety that goes with something like that. I'm glad Fiona is doing so well.

    ReplyDelete
    Replies
    1. Glad your son is doing so well now. Yeah, the fear does gnaw at one.

      Delete
  8. A miracle indeed. How wonderful that she is doing so well....;)

    ReplyDelete
    Replies
    1. Indeed, TB. As you know, they are a gift to us grandparents.

      Delete
  9. Oh man, reading out this made me a bit upset. I'm not sure how the wife and I would have been able to deal with such a thing, but I'm happy to hear that all is well. And yes, spoil the child as much as possible. I know the wife and I spoil our four-year-old, especially when he gets all stars on the magnetic board for being a good boy during the week! The way I figure, we're only getting once chance at having a happy boy. As long as he's responsible and listens (as much as a four-year-old can listen), he gets to experience the fun things in life..

    ReplyDelete
    Replies
    1. Sounds like you're on the right track, take time at this age to savor it, it becomes something different, really good, but you'll never get this unrequited love again.

      Delete