// 7 Q U I C K T A K E S V O L.1 0 //

//1//

Reentry after vacation is always difficult.  Thankfully ours was gradual.  We got home late last Wednesday. Alex had planned on being off work through the end of the week so we had Thursday and Friday to unpack, do copious amounts of laundry, walk to Dunn Bros. (my favorite local coffee joint), watch a little TV, and just overall rest up a bit.  We even went to a nearby Splash pad with Johnny's godparents Ian and Jacqui and his favorite buddy, Iggy. 

Monday Alex went back to work and Johnny and I went back to our usual at-home routine, which largely revolves around changing so many poopy diapers, and preparing, eating, and cleaning up breakfast and lunch.  It's amazing to me how much time those 2 things take up. It's also amazing to me how used to having Alex around I got while we were on vacation and what an adjustment it was to going back to being home alone with a baby. 

//2//

Fortunately for me, this week was my birthday week, so there were a few extra fun things to help ease the shock of going from vacation to everyday life. 

My little brother's birthday is the day before mine.  When my mom was pregnant with him I was so afraid he would be born on my birthday.  As an 8, almost 9 year-old, having a birthday all to one's self is very important. Well, Jake was gracious enough to let me have my day, but we still end up celebrating our birthdays together every year.  And now that I'm grown up, I really like it. 

I turned 28.  There's nothing significant about that number, except that the older I get the harder it is for me to remember my age. I've never felt more like a grown-up than I have in this first year of motherhood, but don't really feel like I'm getting older. I thought I was turning 26, that I still had a lot of my twenties left. I see pictures of celebrities that are 20 or 21 and I think "They must be the same age as me." All my life I wanted to be older, but now I have finally reached that phase where I look back on youth with fondness.

Anyway, it was a good birthday. Mani/pedis with my sister, take out from our favorite Thai place with Alex, girls nights at Marvel, and my whole family spoiled me rotten with a beautiful Lily Jade diaper bag, which is, to sum it up in a single word, heaven.

//3//

I love August, except for the fact that this is the time of year that my garden and all my flowers start to look really ugly.  Everything's getting overgrown, the grass is getting brown and crunchy, and I can only keep weeds at bay for so long. This is the point of summer where I just kind of give up. 

Thankfully the garden still produces despite my negligence. Tomatoes, cucumbers, peppers, Swiss chard, beets. But mostly tomatoes. One of the reasons I love August so much is that we eat tomatoes, all the time. Caprese, bruschetta, BLTs, salsa, spaghetti. This golden tomato sauce is one of my all time favorites, we've had it twice since we've been home from vacation.  I can't recommend it enough. 

//4//

This gigantic bunch of gladiolas was $4 at Whole Foods. What a steal! Go get some!

//5//

Johnny had a kidney ultrasound this morning.  For those who are just tuning in, Johnny was born with a series of birth defects, one of which is what's known as a horseshoe kidney.  This is a condition where the two kidneys are joined together, making a horseshoe type of shape.  It's more of an oddity than a health threat. Many people live their entire lives with a horseshoe kidney and don't find out they had one until they're in the 70's. A horseshoe kidney can be more prone to blockage and re-flux however, and so the pediatric urologist has been monitoring Johnny's. This was his third kidney ultrasound and everything still looks great! So that's good news! Just annual ultrasounds from here on out.

Sometimes I think back on those first few days after Johnny's birth when defect after defect was being discovered; imperforate anus, horseshoe kidney, spinal irregularities, hearing loss. And for each one we were presented with a sea of information that made no sense, and dealing with it all seemed impossible. But here we are one year out, most of those problems have been dealt with, and except for the annual follow up, they're just a memory. 

//6//

Speaking of Johnny, he's doing so many new things.  No, he's not walking yet.  Well, he takes a few reluctant steps when we force him to, but other than that no walking. But he has started stacking blocks, and playing with his stacking rings, he's even stacking his cubes of watermelon while he's eating lunch. He's started mimicking us a lot more too, clapping, combing his hair, he's even been copying dance moves! It's so amazing to see this interaction, as well as fine motor skills, develop. And I'm quickly realizing that when we reach milestones like the first day of school and his first piano recital I'm going to be a mess. 

//7//

There's nothing like these summer nights, even if it is humid and disgusting right now in the great state of Minnesota.  The air smells so rich and earthy. The chirp and buzz of crickets and cicadas is the never ending sound track to our sleeping. Our neighbors are out on their porch and I can hear them singing and playing on guitars. Actually, whoever is singing sounds an awful lot like the lead singer from Pearl Jam. This is part of summer where I realize it won't be here much longer, and so I soak up every part of it. 

Happy weekend everyone!

For more Quick Takes visit Conversion Diary.

The Last Hurrah

It's official: Johnny no longer has an ostomy!  But it wasn't going to go without a fight.  This week has been the WORST for bag leaks. We changed two bags Saturday, one bag Sunday, one bag Monday, three bags Tuesday (that was a record), and then today, Thursday, this morning at the hospital about 30 minutes before operating time, the ostomy gave one last hurrah. All over my sweater.  But it's done, over, I will never have to change another ostomy bag in my life. (though I still feel the need to knock on wood.)

It was a rough morning at home.  The cut off time for feeding Johnny before surgery was 3:30 this morning.  I nursed him then and we went back to sleep.  But he woke up at 5:30 wanting to nurse, which we could not longer do. It is the worst feeling in the world to know your child is hungry and not be able to feed him. Alex tried to bounce him back to sleep but he wasn't having it, so we were up at 5:30, then checked into the hospital at 7:30. Johnny was pretty cranky, and it was hard for me to hold him because he just wanted nurse and we were both frustrated.

Surgery was scheduled for 9:00 am and  lasted about about an hour.  Johnny was away from us for about 3 hours total. They don't let parents back into the operating room with babies, so when it was time to go back the anesthesiologist carried him away. It's always a little sad for me to see Johnny being carried down the hall.  He's a pretty brave little boy though!

Surgery went well! Johnny has a pretty big incision at the sight of the closure.  Even though this procedure was not as complicated the anal reconstruction it will be a harder recovery.  The anus is in a region of the body that just doesn't see a lot of action. You sit on it, but it stays pretty stationary, unlike his abdomen. Every time he twists or scrunches his stomach the sight of that closure is giving him some discomfort. He's had a couple of doses of morphine, but for the most part he's just on mild pain relievers. He's been pretty out of it and sleeping restlessly.

Now we are just waiting for a poop! We are told this will probably take a couple of days (although one of the docs told me there is another kid in for the same thing who has been waiting six days!!) Johnny can't have anything orally until we see that first stool. Not being able to nurse him has been the hardest thing for me. I know it would be such a comfort to him and help him sleep better. Last time I was nursing him within 5 hours of surgery. But now I have no idea when I will be able to nurse him next.  I've got my pump along and am having some major flashbacks to our NICU days when the cycle of pumping, washing my pump parts, holding my baby, and eating something is all I do.  It's not very much fun. They did say that if he really starts to perk up and if they are hearing bowl sounds, they might let him start nursing even though he hasn't pooped yet.  We've smelled some gas! So that's a start!! Have you ever been so excited about gas? Probably not.  

During each of our hospital stays I am always amazed by how, even though we're not really doing much, the days are so busy.  There is always someone coming in our room or to check some piece of equipment that has gone off beeping. Alex and I have been watching the West Wing on Netflix (I know, I know, ten years late), and we had the very last two episodes left.  We decided we would watch them and will all the interruptions it took us from 3:00 on the afternoon to 10:00 at night!

Alex and I have been so appreciative of all the prayers and support we've been getting from family and friends.  I can definitely feel the peace of the Lord even in the midst of this stress and frustration.  We'd love it if everyone could say a few prayers today for a big diaper blowout! that would be great!

More updates to come.

Thanks!

A very groggy Johnny gets a visit from Grandma and Grandpa Shepperd

This is our view. Not bad!

FINALLY got Johnny to stay asleep in his crib. Note the pacifier.  He never takes them, but he's so desperate to nurse he'll take it now.  Poor baby.

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. 

//Thanks!//