Saturday, January 25, 2014

On Becoming the Mama Bear

They say that things have to get worse before they get better. Things definitely got worse, but now they are finally getting better.

I could give you all the details, and tell you about how Johnny just wasn't keeping food down, and about how his belly was becoming distended again.  Or I could tell you about what it was like to see him get an NG tube put in for the second time. Or about the series of X-rays they did over three days to determine that there was bowel obstruction that would require a second surgery. And I could tell you about the surgery it's self.  But I am really tired of talking about medical stuff. The important thing for you to know is that Johnny had to go into surgery again on Sunday to correct a bowel obstruction that resulted from the first surgery. And after that we were back to square one with his recovery.

What I do want to talk about is what it's like to be a mother in the hospital. These last two weeks have been long and draining. Each day is so full and so much happens in 24 hours. I believe that all difficult circumstances yield great fruit.  Some perspective is gained, some skill or virtue or disposition is acquired. Over these two weeks I have learned to become a Mama Bear. The Mama who stands up and fights and roars for her baby. It's not that I haven't fought for Johnny in the past. But trying to be a mother in a hospital setting with a new nurse every 8 hours and a team of doctors coming into your room each morning when you are barely awake requires you to stand up and roar in a different way than you would have to at home.

It's not that I'm fighting doctors and nurses all day.  I have a deep respect for doctors and nurses and we have had some really great ones taking care of Johnny. Each day the docs make a plan, and it's up the nurses and us to carry it out. Depending on the doctor the plan may change. Every nurse has their own style and opinion. But when it comes down to it, I know my baby better than they do, and that's where I stand up for him.  I know that he will sleep better in a bed with me than in a crib by himself. I know that giving him clear liquids in a bottle will just make him mad and gaggy, and he'd be better off just nursing.  I know that, no, he doesn't have a fever, he's just warm when he wakes up from a nap. Or, even though you took his temp 20 minutes ago, he feels warm, can you take it again? And when he had major spit up after getting Tylenol, it's not his GI, it's just the result of him trying to gag up the medicine. I know when it's ok to do vitals when he's sleeping, or when we shouldn't wake him up.  I know if he's crying because he's tired,  or because he's hungry, or in pain. I know my baby, and it was really gratifying to see my mothers' intuition help Johnny be more comfortable and help him make a good recovery. 

After the second surgery Johnny had the recovery that was originally expected of him. Sunday and Monday he was pretty uncomfortable and needed strong pain control. Tuesday he began to perk up, he got his NG tube out and we began lessening his morphine. Wednesday I was able to start nursing him. He didn't have much of an appetite and only nursed twice. But he didn't throw up! Thursday he really turned a corner. He was taken off morphine, was eating a little more and finally started pooping. Like, actually pooping. Normal baby pooping.  He even had a blow-out and I got poop on my jeans! It's was like a Christmas miracle!

 And today; today was the day they sent us home. That's right, I am writing this post from the comfort of our own home. And it is so good to be home. Johnny is doing great. He's averaging about 10 poopy diapers a day. (The surgeon warned us that he would have very frequent stools for the first few weeks.) It is so good to be nursing my baby again. That separation was really stressful and I will never take being able to nurse him for granted again. It's also super crazy to have him sitting on my lap and feel the rumble of his little toots! We are in a new chapter of life with our brave little boy. And we're hoping that we have put hospital stays behind us. 

Thank you, friends, for all your love and prayers and food and friendship. You make life sweet and good when things are kind of rotten. You are all a part of Johnny's life and we will tell him that when he gets bigger. We love you!


Saturday, January 18, 2014

Too Many Days Post-Op

Last week when we came in for surgery I did not think we would still be here 8 days later. Things are moving very slowly. We seem to be taking one step forward and two steps back.

Johnny got an NG tube put in on Tuesday. Wednesday night there was hardly any fluid draining out. So Thursday morning they took out the NG tube. We tried some clear liquids, he kept it down. Then a few hours later I nursed Johnny just for a couple minutes, he kept that down. A couple hours after that he was not showing any signs of being nauseous so we tried a little more nursing and....he threw up again. We stopped feeding him and he was fine through the night but threw up again this morning. They did a set of X-Rays to rule out a bowel obstruction, and then put the NG tube back in. And we are right back where we started. 

We have to keep Johnny's belly from becoming distended. It will be harder for his intestine to heal if there is pressure on it. He will also begin receiving nutrition tomorrow through a PICC. (It's like a super IV that lasts longer. ) The only thing we can do is give it more time. 

Johnny has been surprisingly sweet and happy today. He had even smiled at some of the nurses! But this hospital stay had been hard on all three of us and we can't wait to get home. 

The hardest thing for me has been not being able to nurse Johnny. He is used to nursing all the time for everything, going down for a nap, when he's upset, going to sleep at night, when he wants to cuddle. It's been very emotional for me to have that part of our relationship put on hold. Johnny has been doing pretty well. It's hard to tell if he feels too yucky to want to nurse, or if he has resigned himself to the fact that he can't nurse. Either way it makes me sad. Now to fall asleep he sucks on his pacifier and holds my hand. I'm glad he's getting some comfort from the pacifier but I am incredibly anxious to get back to our normal. 

Prayer Requests:

-Complete healing and restored function of the bowel. 
-liquid draining from his stomach would decrease and be clear. 
-he would make lots of poops. 
-that there would be no complication or infections from the PICC
-that he would be able to keep food down. 











Tuesday, January 14, 2014

5days post-op: gratitude

Today I thought instead of writing about all the things that are difficult I would write about all the blessings that have filled our hospital stay so far.

The first is very obvious to me every time I enter the unit we are staying in. "Med/Surg, Hematology, Oncology". Some of the other kiddos on this floor are recovering from surgery like Johnny, but a lot of them have cancer or blood infections. Yes, what we are going through with Johnny is very difficult right now. But it's only difficult right now. For the majority of Johnny's seven months here our life has been very normal. I even forget sometimes that he was born with this. This is not life threatening. I know there are kid here going through chemo. My mom was chatting today with a dad whose four year old son had a brain tumor, then went through radiation, and is now fighting an infection. I know there are families who spend A-LOT of time at the hospital. I know their lives are deeply affected by their children's illnesses, some of which are life threatening. All things considered, what we're going through is not that bad. 

Second: We have The Best Support System! Prayer, food, and boosts of morale.
 Family, friends, and people who have never even met Johnny are praying for him. He is on the prayer lists at several different churches. Even though Alex and I are stressed and don't like being here, we have a peace that pervades all we do. We have not had to worry about a single meal. We have eaten better here the last five days than we do at home! And all sorts of sweets and treats keep making their way to our room. As well as some fun things for Johnny to play with! 

Social media sometimes gets a bad rap for being impersonal and replacing more meaningful communications. But in a situation like this it is a life saver. During all three of our hospital stays with Johnny one of our favorite things to do has been at the end of the day to read to each other all the encouraging comments and messages that people have sent us. We've had so many people come to visit and cheer us up.  And it is such a comfort to know that our family is close by and we can call on them for anything. It's especially nice to have my mom and my sister come hold Johnny so I can shower, or pump. (Grrrr....pumping)

Thirdly, I'm so grateful that Johnny has had some relief from his gas pain with this NG tube. He slept through the night last night. Did you hear that? THROUGH THE NIGHT!! All three of us woke up feeling so refreshed. Johnny had at least an hour of happy awake time in the morning and it was so nice to see him playing with his toys. The day had some ups and downs. We're still just waiting for a really big fart or something to clear out his intestine. Also, due to an incident involving a new IV line, Johnny now hates every nurse and cries every time one of them comes into our room. But Johnny cheered up this evening and gave Alex and I a few big smiles tonight. That was the best part of my day! 





Monday, January 13, 2014

4 days post-op: NPO & NG

Just a quick update before Johnny and I hop into our hospital bed. (Side note: we got more sleep last night than the three previous nights combined. We did end up giving Johnny a dose of morphine because he was so uncomfortable, so I'm sure that contributed to his sleep. But I'd like to think the co-sleeping helped too!)

Johnny remained very uncomfortable for most of today. Although he was passing some gas his belly just wasn't going down in size. It was very hard to watch him try to get comfortable with no success and then finally just fall asleep with his eyebrows furrowed and the corners of his mouth turned down. They resumed the NPO order (nothing by mouth) which was fine because I don't think he had any desire to nurse. 

People keep asking me why his intestine is backed up even though he had his great big first poop, so I'll explain a little more. When they closed the ostomy they actually cut part of the intestine out (the part that was sticking out for his stoma) to have a fresh cut to sew together. That's a lot of trauma for the intestine to go through so it shut down. Since Johnny has been NPO basically since Thursday his stomach has also shut down a little.  We think the stool he initially passed was what was already in his system before surgery. And hindsight being 20/20, we now realize that we gave him too much breast milk too soon. His stomach was not ready for it, so it triggered a cycle of vomiting and backing up. Long story long, he's full of gas and can't work it out. 

Today he ended up getting an NG tube. This is a small tube that goes down his nose into his stomach. Sometimes they're used for feeding. In this case it is used to suction out the stomach.  I was initially not excited about another thing hooked up to Johnny, and he really did not like having it put in, but I'm glad we did it. As soon as the tube reached his stomach green bile started spraying out- even before they had finished hooking everything up! In the first 20 minutes about 200 ml had been collected! I thought about taking a picture to post, but then decided to spare you. His comfort level improved to quickly. He slept very soundly for a while. And then he was awake and interested in playing with toys for a little bit, that hasn't happened since before surgery! 

I'm hoping this is a turning point and that we begin to see some progress. It has been a long four days so far and we're ready to have things go well!



Sunday, January 12, 2014

3 days post-op: not as bad as yesterday

Today was not as bad as yesterday. We didn't really get any sleep last night. Alex has been so great and sitting and rocking Johnny for hours during the night so we can both sleep. I mentioned to our nurse last night that we co-sleep at home so Johnny is not used to sleeping by himself. She said that we might be able to get a bed instead of the crib so that I can sleep with him. I didn't think that co-sleeping was an option in the hospital so I didn't even ask. She said they don't encourage it, and it kind of goes nurse by nurse, but that we should do what we do at home. 

Later that day they switched out the crib for a bed and Johnny and I took a nap together and he slept so well. I'm hoping that we will all get some sleep tonight. 

Johnny was pretty irritable this morning, and I just got the feeling that he was wanting to nurse. We tried just a few swallows and I cut him off. He seemed really mad about that and just kept fussing. The surgeon said if he really wants it then his stomach can probably handle it. So I nursed him a few minutes more and he seemed content with that much. An hour went by and he was still fine. We did a second feeding and still he was fine! We did four small feedings total. After the fourth he looked like he was starting to get uncomfortable, grunting and groaning and twisting and not settling down. He threw up just a little, but his belly was looking a little distended so we decided to call it quits on feedings for today. 

Today was a little better than yesterday. Johnny threw up one more time but I think more food stayed in than came out. He get's very bloated and gassy and crampy, and has the distended belly, which is all common after undergoing this surgery.  It's hard to watch him be in a constant state of discomfort, so we ended up giving him another dose of morphine this evening. He's still a little dehydrated from all the vomiting yesterday so they have upped his Iv fluids a little more. Progress is slow, but I think we are moving in the right direction. 

Prayer requests:
-We could all use a good nights rest!

-that Johnny's belly would not be distended and that he would be able to get all his gas out. 

-that he would continue to pass stool and make more yet diapers. 

-that he would tolerate feedings tomorrow even better than today. 

Thanks guys! Now I gotta go co-sleep with my baby!




Saturday, January 11, 2014

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!

Friday, January 10, 2014

1 day post-op

Today was a rough day. Johnny has been pretty uncomfortable most of the day and had a few episodes of more intense pain. The name of the game today was pain management. He's been on regular pain meds and we've needed to give him morphine a couple of times. He's also been running a low grade fever all day. That's normal post-op, if it continues tomorrow that may be of concern, or if it gets above 101 degrees. They are closely monitoring the sight of the closure because there is a risk of infection there. He's receiving antibiotics.

The hardest part about this is that Johnny can't nurse. Even though he's receiving IV fluids I'm sure he's still feeling  a little hungry. But more than that, that's his greatest source of comfort. It's like someone took away his blanket, but it's still in the room and they won't give it back. He's had a pacifier in his mouth the entire day, a real first. This boy never takes a pacifier. It breaks my hart because I know nursing would soothe him so much. 

We've been smelling some toots that don't belong to either Alex or me! Alex actually heard him toots once too! And just this evening our nurse said she could finally hear some little bubbles in his bowel. If this continues they said we can start feeding him again tomorrow! 

In the meantime we are trying to give him as much comfort as possible. We've just been holding him all day, taking turns rocking him in the rocking chair. He's mostly been dozing, but he's had a few wakeful moments where he's been interested in toys, or in trying to pull the IV out of his foot. But when he falls asleep he holds onto our hands and won't let go.

It's been frustrating to see Johnny this uncomfortable. After his last surgery he was basically back to normal after 24 hours. But we were told that this procedure would have a slower recovery and that Johnny would have a harder time post-op. All the nurses have said that he seems normal. But it's still hard to watch and hard not to worry that he won't feel better. 

Prayer requests tonight:
-First that Johnny would not be in pain and be able to get some good rest.

-That Alex and I would be able to get some sleep too! (We got about 5 hours last night) 

-That Johnny's fever would go away

That he would not developed an infection

-That he can start nursing tomorrow 

-And that he poops real soon!!!

Thanks friends!



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. 

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