7 quick takes vol. 16: iPhone photo dump

linking up wtih Kelly at This Ain't The Lyceum for some quick takes.

We are reaching waaay back to get you all caught up and to give me the opportunity to post some iPhone photos that you otherwise would never get to see.

//1//

On Mother's Day we took the train downtown to the St. Paul Farmer's Market where Johnny picked out some hanging baskets for me. Going to the farmer's market on Mother's Day has become our thing. And getting me hanging baskets for my Mother's Day gift has also become our thing. Every year I try really hard to keep them alive the whole summer and usually make it until August before they are totally dried up, but this year is going to be different. 

We had a blast riding the train. Shamefully it was our first time, even though it's been running for over a year and there is a stop 3 blocks from our house. We didn't even have to pay because I had two free passes that were included with my jury duty summons. Jury duty, the gift that keeps on giving. 

//2//

We've started potty training! Well, only a little.  If you've ever come to our house or spent any time with us at all you will know that Johnny poops A LOT. This is because of all the intestinal surgeries he has had. No joke, it's about 10 poops a day around here.  So we just figured we should get a potty chair and stick him on there a few times a day to try to reduce to number of diaper changes we have to do. It's been great. The first day he went 6 times in the potty chair.  He really likes to sit there and then peek in to see if anything has come out yet.  TMI? Ok, sorry. 

//3//

Also on Mother's Day, we became godparents again! Johnny's godparents, Ian and Jacqui, welcomed little bundle Archie about a month ago, and we were named his godparents. It's just a big circle of godparents around here.

Johnny really doesn't like it when I hold other babies. He has no idea what's coming. 

//4//

My husband is unemployed! It's ok though, we knew it was happening.  Actually, it was intentional. He's going back to school to become a Physician Assistant. His program starts June 1 and he's taking a couple weeks of vacation before he starts. And it has been SO NICE to have him home.  I just have to remind myself not to get too used to it. 

This is what staycation looks like. 

Actually we have a to-do list the size of Texas that we've been trying to get through.  But there's been plenty of lazy time too.

//5//

In related news, Alex started a blog! Yay! Welcome to my world, sweetie! He will be blogging about what's it's like to be in PA school and will also be doing lots a baking projects now that we no longer have the unlimited access to bread that a bakery manager's family is accustomed to. Find him over at The Baking PA.

//6//

Last week Johnny and I went to visit a friend in the hospital. It's the same hospital we go to for speech therapy, and the same hospital where Johnny was in the NICU. While walking to see our friend we passed right by the entrance to the NICU, the very doors we walked in and out of for 9 days while our baby was there. I haven't been back since we left and at first I was feeling kind of nostalgic, but that quickly turned into painful memories and the welling up of eyes. I don't think about it as much as I used to, but I know I will never forget what it was like to have our baby in the NICU. 

But we have come a long way from this:

to this:

//7//

Speaking of Johnny, he is turning into quite the budding photographer.  He takes even more iPhone photos than I do. In fact, hardly a day passes when I don't find something like this on my camera roll.

Here is one of his most recent selfies. He's still got the cheeks. 

And because there is nowhere else to fit it in, here's a picture of Johnny wearing Alex's socks. He loves to wear Alex's socks. I guess they're comfortable?

Have a great weekend!

//

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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!//

Birth Story Pt. 3: Something's Not Right

Our room was so quiet and calm.  It didn't even seem like the same room I had delivered in.  We spent most of that first day just resting and trying to get nursing established.  Johnny was not latching on; a lactation specialist visited us several times to work on it, but his little jaw was just clenched shut.  Because he hadn't eaten much his blood sugar was low and they wanted to give him some formula.  I was reluctant to give him a bottle until breastfeeding was well established, but I did want him to get some calories, so we finger-fed him some formula. He took a little, but mostly was just sleepy. Family and some friends came to see us and we proudly showed off our calm little baby who would let anyone hold him.

We were given a sheet to document all of Johnny's activity the first couple of days; feedings and wet and dirty diapers. There were many feeding attempts recorded, and we had seen several wet diapers. That first night Johnny woke up crying twice, at 1:00 am and 4:00 am, and each time I was able to nurse him.  But those were the only successful attempts I had.  And we were still waiting for his first stool. At some point Alex saw a streak of poop in his diaper, but the nurse said that was not enough to count. 

All of Friday Johnny slept.  We woke him to try to feed him, but he wasn't taking anything.  All the nurses assured us that some newborns are just very sleepy the first day or two.  I had never had a baby before, so I had nothing to compare him to and wasn't very concerned. But my mom, who had spent most of the day with us, was starting to worry. I later found out that when she went back to my dad's office that afternoon she broke down crying, saying "something's not right, I just know something's not right. He should be waking up to eat!" 

We learned how to give Johnny a bath.  When the nurse was showing us how to clean his....you know, boy parts, she noticed a little poop under his foreskin.  She suggested that perhaps there had been meconium present and birth, and it had gotten stuck under there, but because the delivery had been so chaotic and bloody everyone just missed it.  She cleaned him off and we didn't think anymore about it.  But then a few hours later Alex noticed another poop streak in his diaper, and this time he realized it was in the front.  A new nurse was on duty and we showed her the diaper, she took a look at Johnny and there was more meconium under his foreskin.  She thought this definitely was not normal and that he was beginning to look rather jaundiced, so she had the N.P.on the floor take a look at him. 

All this time I had a mounting sense of worry, but it wasn't until they wheeled him away in his little bassinet that it hit with over whelming intensity; there was something wrong with our baby. Alex and I followed behind to the special care unit.  I had hardly been on my feet at all since the epidural wore off, and my legs were weak and unsteady.  One of the nurses told me that I might want to just wait in our room, that they would be throwing around a lot of medical jargon and that it might be confusing.  That didn't matter, I wanted to stay with our baby. I was trying to hold it together, but seeing my little baby, naked, under the bright lights, being poked and prodded by the N.P. and the Resident on duty was too much.  They said he was jaundiced, lethargic, his belly was distended, and there was an absence of bowel sounds.  The N.P. said she was going to probe his rectum to try to get some bowel activity going, but every time she tried she met with resistance.  After turning him and carefully examining his little bottom she discovered that there was no rectal opening. She looked at the Resident and said "fistula?" 

I didn't get to find out what a fistula was until later. At that moment they started making phone calls to transfer Johnny to Children's Hospital.  And they called my Dr. to see if I could be discharged early to go with him.  I had not showered since Tuesday (and it was now Friday) so I decided the best thing for me to do was to get cleaned up and ready to leave.  Alex called my parents to come down and wait with me while he stayed with Johnny.  I stumbled back to our room half blinded by the tears that I could no longer control, and carefully got into the shower, hoping my weak legs wouldn't give out on me.  The hot water felt good, but it felt better to be alone and give into to the heaving sobs I had been suppressing.  There in the shower I allowed myself to be mad and to feel doubt.  Why was God letting us go through this? Hadn't we been through enough already? I thought of Scripture telling us that we will not be given more than we can handle and that "suffering produces perseverance; perseverance, character; and character, hope." But I was tired of suffering, tired of being tested, tired from over two years or persevering, and I was running out of hope.  And yet, in a tiny quiet part of me, I knew that I was going to get through this.  I had no idea how, but I knew that I would. 

I got out of the shower, somewhat calmer, and began to pack up my things. My parents were there now to help me, and Alex came back to our room to give an update. Johnny had an inperferate anus, that means there is no anal opening.  He also had a fistula, or a connection, between his colon and urethra.  He was unable to pass stool through his bowel and so he was completely backed up and his body had been trying to pass stool with his urine. Alex's dad is a pediatrician, and told Alex over the phone that Johnny's situation was not life threatening, and that as far as birth defects go it is pretty easy to deal with, he would need surgery to correct  his anus and intestine and to close off the fistula. It was reassuring to hear this, but I still had no idea what was going on.  They were loading him into a transfer unit to take him to Children's.  I suddenly realized I had not given him a kiss before I left the special care unit. I told Alex that I wanted to kiss him before he left. So Alex went to figure that out. In the meantime my mom and the Resident were trying to get me to pump so that my milk would come in.  I remembering being so annoyed with them and being so incredibly distracted that I didn't care if my milk came in or not.  But I did sit down and pump a little.

Then they brought Johnny in for me to say goodbye.  In my previous post I said that pushing Johnny out was the hardest thing I had ever done, but I am taking that back.  Saying goodbye to him, while only being able to touch his little hand, was the hardest thing I have ever done, and by far the worst moment of my life.

Alex rode with Johnny in the ambulance, I stayed behind to wait for my discharge.  My sister joined us at the hospital.  She had been on her way to have dinner with some friends when she got a call from my mom that something was wrong with Johnny.  She sat in her car, in the parking lot, crying and feeling like she couldn't enjoy an evening with her friends while we were going through such a crisis, so she came to lend support.  I don't know what we would have done without our family and friends who came around us and held us up during that incredibly difficult time. 

When I was finally all discharged I was wheeled out of St. Joseph's Hospital and my mom drove me the 5 blocks over to Children's Hospital.  All I wanted was to be with my baby and my husband.  When we got to the NICU they had Johnny set up in an incubator.  The rounding Resident came by and told us the tentative plan for Johnny.  I didn't hear anything she said.  I was completely crushed, feeling like I had entered a long dark tunnel and I could see no end.  When the doctors left Johnny's nurse, a very sweet Philippino lady, asked me if I wanted to hold him.  I didn't even know that was possible! She brought a recliner into our room and I took off my shirt and put a hospital gown on.  She took Johnny out of the incubator, carefully trailing a handful of leads, wires and tubes, and I got to hold my baby to my chest.  "This is how it should be," I thought, "this is all we should be doing."  But reality was unkind and we would have to wait a while for things to be as they should.  I told Alex that evening that when we got Johnny home I was never going to put him down. 

It was about 10:00 pm and we still hadn't had dinner, so reluctantly I let our nurse put Johnny back.  I did a little more pumping (and once again was annoyed that people kept suggesting I do so), and we joined my parents in the family lounge for some Jimmy Johns.  I had been avoiding cold cuts throughout my pregnancy and Jimmy John's was one of the things I was most looking forward to eating again, but after forcing down a couple of bites my appetite was gone. 

We decided that I would spend the night at my parents to try to get some rest and Alex would stay on the fold out couch in Johnny's NICU room.  My mom and I made a quick stop at my house to pick up some clothes and my breast pump.  I hadn't realized until then how badly I was neglecting my own postpartum body.  We were walking up my front steps when my left leg gave out and I was down on my hands and knees. I couldn't even get up on my own and I couldn't climb stairs.  Our natural childbirth classes recommended that mothers spend the first week after baby is born in bed, getting up only to use the bathroom and soak in the tub.  That was not an option for me. It was now 1:00 am on Saturday. We got my things, went to my parents house. I pumped, ate a banana, and then cried myself to sleep. 

read next part here