Saturday, December 28, 2013


Christmas Eve Mass. Familiar songs and great anticipation. 
Presents with Alex's family.
Johnny was infinitely more interested in the bows and wrapping paper than any actual gifts.
The evening went much later than Johnny is accustomed to, so he ended up asleep under the tree. 
Christmas morning as a family of three.  This is a tradition I'm really looking forward to. Our own family, our own home, our own tree and gifts and stockings and coffee mugs.
Later on Christmas morning we spend time with my family.
Breakfast mimosas and many cookies and baked treats
A tradition that is only a few years old, but a favorite for many, is a time a sharing before gifts.  Poems, stories, songs.  This years selections consisted of a few scripture readings, the Christmas Truce of 1914, a piano reflection, a history of the carol "What Child is This?" and a lesson on why it was so outrageous that shepherd's were among the first to hear glad tidings of the Christ.
Presents followed by a lazy afternoon of napping followed by a crisp Christmas walk and a Christmas bowl.
The evening ends with the traditional pot pie meal at Alex's parents home.  Twenty people cram around the dining room table for one of our favorite meals of the entire year.

It was a beautiful Christmas filled with family and all our traditions. It's exciting to me to know that in just a few years all these traditions will be things that Johnny loves and looks forward to. He'll talk about them throughout the year and remember how it was the year before. And as our family grows we will make more traditions of our own. And they will become the things we look forward to. 

Wednesday, December 25, 2013

Christ Climbed Down

I heard this poem for the first time several years ago and think of it often during the Christmas season.  It is so snowy and quiet and beautiful here in MN, and the words just strike me as so fitting.  I hope you can read it and find something meaningful in it.  And I hope that your Christmas has been Peaceful and Joy-filled


Christ Climbed Down
by Lawrence Ferlinghetti

CHRIST climbed down 
from His bare Tree 
this year
and ran away to where 
there were no rootless Christmas trees 
hung with candycanes and breakable stars
Christ climbed down 
from His bare Tree
this year
and ran away to where
there were no gilded Christmas trees
and no tinsel Christmas trees 
and no tinfoil Christmas trees 
and no pink plastic Christmas trees 
and no gold Christmas trees 
and no black Christmas trees 
and no powderblue Christmas trees 
hung with electric candles 
and encircled by tin electric trains 
and clever cornball relatives
Christ climbed down 
from His bare Tree 
this year
and ran away to where 
no intrepid Bible salesmen 
covered the territory 
in two-tone cadillacs 
and where no Sears Roebuck creches 
complete with plastic babe in manger 
arrived by parcel post 
the babe by special delivery 
and where no televised Wise Men 
praised the Lord Calvert Whiskey

Christ climbed down 
from His bare Tree 
this year
and ran away to where 
no fat handshaking stranger 
in a red flannel suit 
and a fake white beard 
went around passing himself off 
as some sort of North Pole saint 
crossing the desert to Bethlehem 
in a Volkswagon sled 
drawn by rollicking Adirondack reindeer 
with German names 
and bearing sacks of Humble Gifts 
from Saks Fifth Avenue
for everybody's imagined Christ child
Christ climbed down 
from His bare Tree 
this year
and ran away to where 
no Bing Crosby carollers 
groaned of a tight Christmas 
and where no Radio City angels 
iceskated wingless 
thru a winter wonderland 
into a jinglebell heaven 
daily at 8:30
with Midnight Mass matinees
Christ climbed down 
from His bare Tree 
this year
and softly stole away into 
some anonymous Mary's womb again 
where in the darkest night 
of everybody's anonymous soul 
He awaits again 
an unimaginable and impossibly 
Immaculate Reconception 
the very craziest 
of Second Comings

Merry Christmas!

Thursday, December 19, 2013

Last Christmas

I'm doing a Throwback Thursday to Christmas with my family last year. You may notice a little photo-bombing going on in some of these pictures.

Christmas is that time of year when I realize that I am becoming more and more like my mother.  Instead of buying people things they ask for, buying them things I think they should have.  After the tree has been decorated going back and moving the ornaments to where I think they'd look best.  Not just my tree, other people's trees as well.  Crying during Every Holiday Film.  And in case my mom ever reads this, I'm not implying this is a bad thing, just something I've observed.

Sunday, December 15, 2013

Four More Weeks

This seems like an appropriate time to write a post about dealing with an ostomy bag because I have averaged about one bag change a day for the past week.  (We usually get about three days out of one bag.) Johnny had an X-ray with contrast medium done on his colon yesterday to make sure there were no kinks in it, and it looks great! So barring any bout of the flu, we are on track to have the take down procedure done January 9th.  Just four more weeks of dealing with an ostomy bag and it can't come soon enough.  There have never been two parents more eager to change a poopie diaper than Alex and I!

While changing Johnny's bag is not fun, and worrying about it leaking at inopportune times is a constant stress, his bag is a perfect example of how a person (me) can get used to just about anything. When we were learning how to change Johnny's bag in the NICU it took both Alex and me with the help of a nurse to get it done.  I ask the nurse if she ever did this by herself, and she nonchalantly replied, "all the time!" I couldn't imagine ever being able to it on my own.  But I was forced to pretty quickly. Johnny's bag leaked on Alex's first day back at work-- my first day home alone with the baby.  It took two attempts and 45 minutes to change that bag. Johnny screamed the whole time, and I was crying by the end. Now, if all goes well, I can do it in about 10 minutes, no tears!

For those who are curious: here is what a typical bag change is like!

Here is Johnny with the leaking bag.  The book is to keep him distracted  so he doesn't pull the bag completely off and get poop all over himself.

This is an ostomy bag.  While I get the new bag ready Alex takes the old bag off, using a damp cloth, and gets Johnny all cleaned up. 

Using a pattern saved from the previous bag I trace an opening the size of the stoma.

Then I cut out the whole.

This is a sticky putty called cohesive, I make a ring of it to go around the opening I just cut.

Like this!

Now the bag is all ready to be applied.  But today we had time to give Johnny a bath, which is nice to do because then the skin at the sight of the stoma can get really clean and makes a better seal for the new bag. So here's a picture of Johnny checking out the water faucet.

Clean baby!

This stuff is called "No Sting". It is very very sticky and makes a seal on the skin so the bag sticks better, and also protects the skin when we remove the bag. 

After applying No Sting we can put the bag on. This is the new bag over the stoma.  Yup, that is Johnny's intestine you see there!

Then we use a very high tech piece of equipment called a Tootsie Warmer to help melt the seal.  Just kidding, it's just a bag of beans that we used to heat up and put in the bottom of our bed when it's cold.

There was a small window, when Johnny was about 3 months old, when he was old enough that he didn't cry during bag changes, but young enough that he wasn't rolling around.  Now the hardest part is keeping him still while putting on the bag and waiting for the seal to set. But other than that it's not too bad!

When Johnny first got his colostomy and the doctors told us he would have it for 6 to 9 months it felt like it would be a life time. But now we're almost done! Just as we are getting some closure (literally!) to one big phase of our life a new chapter of uncertainty is opening up.  We had an appointment with an orthopedic surgeon this past week to do some more x-rays of Johnny's spine. After we found out that the original concern that his tail bone might be tethered to some other part of his body was not an issue I began to breath easy about his back.  He has some curvature in the thoracic region of his spine, but lots of people live with scoliosis and it's no big deal.  But on Wednesday the doctor was concerned that Johnny's head tilts to the left, all the time. He pulled up images from the MRI he had done in September to look at the top two vertebrae.  He has an atlanto-axial instability.  Which means the bones didn't form right and the junction in the top vertebrae is too loose and his head is not being supported as it should be. Babies bones take a long time to fully form, so we will be repeating some imaging when he is a year old, and that will give us a better idea of how much, if any, intervention he will need. Worst case, he would need another surgery to put his head on straight. ie: locking his neck into place. I'm told it's not a risky surgery, but he would have limited range of motion in his neck for the rest of his life. If it's not too bad, he may just need a neck brace. There is a chance that his bones will form well enough that he won't need anything. But for now we just don't know.

This appointment was very frustrating. When we are at home living our lives it's very easy to forget we have a baby with health problems.  We're reminded when his bag leaks. But soon we won't even have to deal with that. He wears hearing aids, but I'm so used to them now, it's like having a kid with glasses. I was really beginning to feel like we were putting medical issues behind us and that things would become normal, only to be thrown back into uncertainty and worry.  

This weekend is the third Sunday of Advent- Gaudete Sunday. Rejoice! And in the readings there was a theme of healing. 

Be strong, fear not!
Here is your God,
he comes with vindication;
with divine recompense
he comes to save you.
Then will the eyes of the blind be opened,
the ears of the deaf be cleared;
then will the lame leap like a stag,
then the tongue of the mute will sing.
~Isaiah 35:4-6

I don't believe in flipping open the Bible at random to get an answer from God. But I do believe He has a way of telling us what we need to hear when we need to hear it, and I needed to hear those words. Our God heals; bodies, but also hearts. He heals disease, but also fear. And he is with us, and Johnny. If you are reading, will you commit to praying for Johnny spine between now and his first birthday? I know that the Lord's will will be done. I know he can heal Johnny's spine. I want my will to be aligned with His. 


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