C L O T H D I A P E R S: H O W & W H Y

I was inspired by Jacqui over at Mexican Domestic Goddess to share our take on cloth diapering. If you really want to know about cloth diapering you should definitely check out her post because most of what I know I learned from her. Some people are very good at researching things and finding out all there is to know.  That's Jacqui. Other people are good at letting their friends do the research and then learning from them. That's me!

First off, let me tell you why we chose to cloth diaper.  The first reason is that it is very cost effective.  You'll have to spend more money up front but in the long run they are much cheaper than disposable diapers. And if you plan ahead and put them on a baby registry then other people will buy them for you.  Or be like Johnny and ask for them for Christmas! 

The second reason we cloth diaper is a part of a larger desire to live simply, cut down on waste and buy only what we need.  It's the same reason we don't want Johnny to have a lot of toys. Just a few intentionally picked, good quality toys that all fit in one bin. It's the same reason my new years resolution is to to do no clothing shopping during 2014. Live simply, live intentionally. Yes, cloth diapers take more time and work, but I believe that faster and easier is often not better. I like the idea of working with my hands. And in the warmer weather when I hang the diapers out on the clothes line I like to think that I am connecting with women from past generations.

The third reason is that the cloth diapers of today are super duper cute! And who doesn't want to see a cute baby in a cute diaper?

Clothes diapers generally fall into two categories: all-in-ones and covers and liners.  We do a combination of both. An all-in-one is exactly what is sounds like, it's all one piece, and can only be used once before washing.  They are very easy to use, but tend to be kind of expensive.   The bumGenius Freetime diaper is the best diaper we have ever used.  Hands down.  At $20 a pop we can't afford to use them for every diaper change.  We purchased 4 on our own, and Johnny got a bunch for Christmas. We use them for over night (yes, one diaper lasts the whole night) or if we are out and about and don't want to have to change diapers as often.  

We also have some Thirsties all-in-ones that are not as good as the bumGenius, but they're nice to have on hand for babysitters who may not feel quite adept at finagling a cover and liner. 

Speaking of covers and liners, these are ours:

We use Thirsties Duo Wrap covers, which, unlike their sister all-in-ones, are great. I don't remember the last time Johnny had a leak in one of them. For liners we just use a basic pre-fold. We have gotten all of our all-in-ones off of Amazon. I know that a lot of people like Green Mountain Diapers. Peapods in Como Park also has a lot of cloth diapering gear as well as a weekly information session on going cloth. They carry used diapers too, and that's where we got all our pre-folds.  It sounds kind of gross to buy used diapers, but they've been professionally cleaned, they don't require any breaking in (new ones would) and they're cheap, I think I paid about $15 for a dozen. 

This is how we do liners and covers.  

Then you just button them up! 

We have five covers.  We use two a day, switching back and forth and letting them dry between uses, unless they get reeeally dirty, then it goes in the wet bag. We have a couple of Planetwise wet bags that we keep in the bathroom (plus a small one for in the diaper bag) and when a bag fills up we go dump it in the washing machine.  First a rinse cycle, then a wash on hot, we put vinegar in as a fabric softener. I'm currently in the market for a good free and clear detergent that won't break the bank. Any suggestions?

Our cloth diapering has changed a little bit since Johnny has had his colostomy taken down.  While he had his ostomy bag we were only changing wet diapers, so our beginning with cloth diapers was pretty easy. We didn't have to worry about diaper rash at all and all the reusable wipes we had bought largely went unused. For a while though, we didn't think cloth diapering would be compatible with an ostomy bag. The NICU nurses taught us the empty the bag into Johnny's diapers a few times a day.  When we made the switch to cloth we couldn't figure out where we were going to dump the poop.  It made no sense to wash poopy diapers when we could just be washing wet ones. For a while we saved a stash of disposable diapers specifically for emptying Johnny's bag, but eventually we just started holding him over the toilet and flushing it all away. 

We also thought for a while that the cloth diapers were pushing on the seal of Johnny's ostomy bag, causing leaks.  We had so many bag leaks around the time we started using cloth.  We tried putting the bag on at different angles, and tucking it into his diaper instead of having it stick out on top.  In the end I think that's what helped the most. 

Now the ostomy is gone, and all our diapers, once so white and pristine, are well used and stained.  Because of Johnny's very frequent poops we're going through more diapers and I've been washing a load of them often every day. His diaper rash has presented some problems, as diaper rash creams can cause fabric to become repellent. Especially the bumGenius' which are microfiber. At the recommendation of my cloth diaper guru I purchased some simple fleece liners, also made by bumGenius, to put on top of the all-in-ones to catch all the diaper cream and save the diapers.  It has been a difficult adjustment, but I prefer this much more to changing ostomy bags! 

Speaking of diaper rash creams, we know a lot about those now! So if you ever are looking for a good one this one is my favorite, and this one is a close second. 

2 days post-op

This is what it's like to be in the hospital with a baby. One day one medical personnel tells you one thing. Then the next day another medical personnel tells you something different. You expect one thing to happen, and it doesn't. Then you  expect another thing to happen and maybe it does, but it's still not what you thought it would be like. So it feel like everything is up in the air and it's never going to come down.

Yesterday was your classic roller coaster. Ups and downs. We are currently in a bit of a dip. I'm hoping that things start going up again. 

Johnny really turned a corner last night. Thanks to all of you who were lifting him up in prayer. He's fever broke, his pain level seemed significantly lower, and he was sleeping pretty soundly. He even gave his papa a great big smile this morning! We had heard some gas and the night nurse said she heard some gas boubles in his stomach. So we were really excited to be given the ok to start feeding him. But when the surgeon came by (very early) in the morning he said he'd like to see a poop before feeding him. I know that's what we were originally told, but having the doctor yesterday tell us that gas was enough activity to begin feeding sounded so great! It was a major disappointment to go back to the original plan. Since Johnny had perked up quite a bit he was more actively trying to nurse and getting very frustrated that he couldn't. I didn't want to make it worse by holding him so he spent most of the morning with his papa. 

My parents came by to deliver some morning coffee, and we all prayed for poop. Then, low and behold, it came! Around 11:00 in the morning Alex felt a rumble as Johnny was sitting on his lap the smell was not going away. Poop! He did it! And we were changing our first poopy diaper. We actually changed four poopy diapers there in about 5 minutes time because it just kept coming! 

Our nurse was just as excited as we were and she suggested we go ahead and try nursing! Nursing Johnny was the best part of our stay so far. He was so content and quickly fell asleep. After about an hour we decided we try a little more to see how his stomach would handle it, but right before I sat down to nurse him he threw up. Not just spit-up, projectile vomit! He's never done anything like that before and it was really scary to see. It was also very frustrating that his system couldn't handle breast milk. Breast milk is supposed to be good for everything! Liquid gold! But not this time. After two days of not eating and having his digestive tract completely shut down he couldn't hold it down. 

We spent the rest of the afternoon trying to get Johnny to drink Pedialyte and apple juice and then watch him throw it up. He was becoming more and more exhausted. The strain from vomiting was causing the sight of the incision to hurt. He was becoming pretty lethargic. It was worrisome, mostly because it reminded me of the way he was acting shortly after he was born, when things were really bad. 

To finish off the evening his second IV blew out. Because his veins are hard to find they took us down to the Emergency Department to get a new one. (I guess the nurses down there are better at finding veins?) We were down there for an hour and Johnny was so tired he was falling asleep even though he bring stuck with a needle. 

I thought this display of super exhaustion would mean we would all get a good nights rest. But we didn't. Johnny slept about 3 hours. He was very uncomfortable, I think it was gas. He's continued to have poopy diapers which is good! But it's going to take a couple weeks for him to get used to the feeling of using his entire intestine. 

Hoping to keep some food down today!

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.


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. 


Yoga Pants and Food Network

We are halfway through our first full day in the hospital, Alex is at work, Johnny is much more alert and happy, and I am completely bored.  Johnny's surgeon was just in and said the best kind of hospital stay is a boring one, so I guess that's good.

Johnny has resumed all his normal eating and pooping activity. In fact, at 5:30 this morning we had the most epic ostomy bag leak to date.  Poop all over Johnny and poop soaked through every layer of bedding on his crib. That was the second time I had been up for over an hour with Johnny that night. Needless to say we didn't get a lot of sleep.

I am realizing that attachment parenting, which I am all for, does not work very well in a hospital setting.  We are a co-sleeping family. It took about two nights after bringing Johnny home from the NICU to realize that we would all be happier and get more sleep if Johnny was in bed with us.  I am aware of his sleeping patterns better than he is and often have him nursed and settled back into a deep sleep before he ever cries or opens his eyes.  Alex is also able to sleep through  it all.  It does have it's down sides; our queen size bed is a little cramped with three, somehow Johnny manages to take up a lot of space. I usually have a stiff neck or shoulders from sleeping in only one position, on my side, facing Johnny. But I love having him in bed with us, hearing him breathe and getting to snuggle him. I never realized how much I love co-sleeping until just a few nights ago when Johnny was doing some major teething and wouldn't stay asleep in our bed.  The only way we could get him down for the night was in a little cradle that we use for naps, so we let him sleep in there.  I thought it would be a relief  having a little more space in the bed but ended up just crying myself to sleep. *Hormones*

Anyway, co-sleeping is not something they let you do in hospitals, especially when your baby has IV's and a catheter running from him. So needless to say Johnny did not sleep well last night.  I think part of it was that he was uncomfortable, but also that he's not used to sleeping by himself. So I spent half the night leaning over his crib trying to fool him into thinking that I was sleeping with him.

Johnny is doing well! He is no longer receiving IV fluids or antibiotics, and if he continues to eat well they will take the line out all together. Then he will just have the catheter, which, as I mentioned before, has to stay in for three days so his urethra can recover from being operated on.  It's kind of annoying that there is only one little thing keeping us here, but I'm thankful that there were no complications with surgery and that Johnny is back to his squirmy, hungry, happy self.

On the up side, we have cable here in the hospital.  And there's no pressure to get ready in the mornings, so I am enjoying me some Food Network whilst lounging in my yoga pants.  Now, if only someone would bring me a latte....

someone's having fun playing with toys!

Reading stories with Auntie Amy

Welcome to the Other Side of the River

"Welcome to the other side of the river!" That's what Johnny's nurse told us when we got to his room here at Children's in Minneapolis.  That statement was preceded by us telling her that we had only been at Children's in St. Paul before.

Johnny's surgery went well and he is currently sleeping off his anesthetic. And we are making ourselves at home in his room, where we will be for the rest of this week. But I should back up to this morning.

Our morning began when my alarm went off at 6:30.  We didn't need to leave for the hospital until 10:30, but 6:30 was the last time I would be able to nurse Johnny before his surgery.  I woke him up and he did a good long nursing and even though I was tired I was contently enjoying and savoring this time to nurse him, knowing that it would be many hours before I would get to do it again. The prospect of not being able to feed Johnny was not a pleasant one. We've had to do that before and it's easiest if Johnny can just sleep through it. Thankfully he went back to sleep after nursing and slept until 8:30.

We spent the morning getting ready and packing up. For not being able to eat Johnny was a very good little boy. He sat serenely with Alex while we had breakfast, like he knew something was going on. I was doing fine until I sat down to pump.  It's not what I'm used to doing and it's not what I wanted to be doing. Around this time Johnny started to get fussy and it broke my heart not being able to give what he wanted and needed. 

We arrived at the hospital at 11:00 and got checked in in the surgery center, then were shown to a pre-op room. Johnny had a little mini check-up, during which he was very chatty and smiley with his nurse, and then got put into his little baby scrubs. And then we just waited until his OR was ready.  We spoke with his surgeon and the anesthesiologist and then it was time to go. I imagined that they would put him on the hospital bed and wheel him off, but the nurse just held out her arms to carry him. It was hard to hand Johnny over, we kissed him, then kissed him again.  Then they walked off down the hall and the last thing I saw was Johnny smiling at the nurse. That little baby is just so full of joy. I love him. 

There were many things that felt like the first time Johnny went into surgery, but while being familiar, everything was also different.  We were sad to see him go, and shed a few tears, but it wasn't the heart wrenching agony of seeing him go the first time.  I was pumping throughout the day, but it wasn't like pumping in the NICU when I had never nursed Johnny.  I knew this was just temporary, and that later that day I would get to nurse him again. When surgery was done Johnny was sleepy, but stirring and opening his eyes, not like last time when it took him almost 20 hours to come out of the anesthesia.  We got up to our room and it looked a lot like our NICU room, only way bigger.  Same fold out couch, but a TV and a private bathroom!

When we were in the St. Paul, NICU we were just down the hill from the Cathedral.  We could look out our window and see the dome and steeple and it was such a comfort to know that Christ was there watching over us.  When we got to our 6th floor room here in Minneapolis I looked our window, it faces east and off in the distance we can see the St. Paul skyline, and there's the Cathedral, much father away, but we can still see it. 

Johnny has been awake on and off.  He seems to be in a little bit of pain, but they haven't needed to give him anything stronger than Advil so far. He's nursing again with no problem, and it is so great to be nursing him. In this procedure they created a rectal opening, closed off the fistula between in colon and urethra and connected his colon to the rectal opening. His recovery should be quick, but we will be in the hospital until at least Thursday because he needs a catheter until the urethra has healed from surgery. So call me if you want to come visit!!

Post-op and sleeping soundly.  Thanks for praying everyone!