The Last Month

The last month hasn't been an easy one. It started with the normal winter viruses, and for Micah turned much bigger. Our family all got a winter stomach bug around the beginning of December, nothing big and most of the people in our area got it. After a while of Micah having it, though, we began to get concerned. He would vomit up everything given to him and after a while he was refusing to eat. 

With Hirschsprung's Disease it isn't uncommon for a simple virus to effect if GI system, or for a virus to turn into enterocolitis. Even a cold could do this to him sometimes. We try to be very careful - even limiting how many people we see because even if somebody isn't sick they could be carrying something. His reactions to any given virus could range from normal, to slowing down his digestion and him having no appetite for a few days, or if we're unlucky it could turn into enterocolitis. A brief description of Hirschsprung's Associated Enterocolitis (from http://research.peds.wustl.edu/) is: "Enterocolitis is a potentially dangerous problem for children with Hirschsprung disease.  Symptoms may worsen over the course of hours and include "explosive", foul smelling or bloody diarrhea, abdominal distension, lethargy and fever.  If a rectal exam is performed there may also be an "explosive" release of gas or stool.  In some cases of enterocolitis, bacteria can enter the blood stream from the bowel to cause sepsis, a problem that can be fatal."

When we became more and more concerned that Micah wasn't recovering like he should have been we did end up taking him into the ER. When there several of the nurses were very concerned about him. By this time he was very lethargic and still throwing up. The doctors weren't overly concerned, though. They sent Micah home without running any tests and told us it was probably a virus. This happened a couple other times after that trip, so we decided to make an emergency appointment with the surgeons.

When we called the surgeons office at the hospital they were able to get him in, but his normal surgeon wasn't working and wouldn't be in for a few days. It was now two weeks after our first December ER visit and Micah hadn't been eating hardly anything. He had lost some weight, wasn't overly interested in playing, and more often than not he just wanted to be held. He did have periods of time were he would play and be happy, but not like he normally does. We were enthusiastic that the surgeons would be able to help us and that he would finally start feeling better. Shortly into our appointment we started to feel much less hopeful. It became clear that not only did the surgeon not usually work with babies and toddlers, but he knew very very little about Hirschsprung's Disease. We left unimpressed and ended up in the ER again later that week.

When we were finally able to see our surgeon in office Micah was laying in my lap, cheeks flushed, throwing up, lethargic and very very ill. We were desperate at this point because most of what had been done for him when we had been taking him in was rehydrating him and then sending him home. Our surgeon didn't even do a physical exam at that appointment, she hospitalized him immediately. After blood tests, x-rays, and many other tests it was confirmed he had enterocolitis and his Alkaline Phosphate level was at 1377.

That day they started Micah on a strong antibiotic and upped his rectal irrigations to 3x per day (we were already doing 2x per day at home, these help to wash bacteria out of his colon). They also put him on intestional rest, which means no eating or drinking. Because of this (and because he had eaten basically nothing at home the past 3 weeks. Yes it was 3 weeks by this point.) they put in a picc line and started him on TPN and lipids.

Micah was in the hospital for about a week, which was hard on us as a family. Even though it was draining to have him there, and to be there all day with him, we were VERY relieved that he was finally getting the treatment he needed to feel better. He started acting like himself a few days after arriving there, and I swear by the time we went home he had more energy than BEFORE he got sick!

Even now that we're home I'm still pretty angry about his lack of treatment. I feel like if he had been treated right away then he wouldn't have been in the hospital for a week, and even if he had been hospitalized it would have been for only a couple of days most likely. I don't know this for sure, but that's how I feel. I still love this hospital to death. They have been very good to us and given him a much better quality of life. I feel unlucky to have met so many that didn't know how to treat his disease, but treated him anyway. Things like this happen in every hospital, and now I know to be more assertive going forward.

At the moment, Micah is doing great! His digestion is still a bit slow but getting back to normal every day. He has an incredible amount of energy! It's great to see him getting back to himself. He has some follow up appointments which I'm sure will go good.

I guess it's just a reminder that with his disease it's a marathon, not a sprint. There won't be an immediate cure all, but hopefully with time he'll get better and better with much less risk of complications. Even this past year I've seen him do better than his first year. Hopefully this next year will be even better!

4 Years of Sobriety

"Strength doesn't come from what you CAN do, 

It comes from OVERCOMING things you 

once thought you couldn't."

On August 3, 2014 I celebrated my 4 years of sobriety! I've been reflecting a lot on my journey to get here, and thought that I would share some of it. 

I've written and rewritten this trying to figure out exactly how much of my story I'm ready to share with the world and realized 4 years later I'm not ready for everybody to know the details of the darkest time of my life. There are some things that I can share, though.

In the beginning I thought that Adderall would make me smarter, thinner, and better in every way. And, for a while, it did. I got good grades and I lost weight. I even made more friends than I had before starting. It didn't take long, however, for me to lose everything. I developed an eating disorder, I started self-harming, and I went into a deep depression. I got angry and frustrated with school and stopped going to most of my classes. I sunk into a depression so deep that I didn't want to live anymore. I attempted suicide several times, and have been told by doctors I really shouldn't be here anymore. I was obsessed with the idea of being the best, but it's hard to accomplish things when you aren't able to think straight. 

Nobody knew about my drug use, but it's hard to hide an eating disorder and how depressed I was so I ended up being put into a treatment center. I had a real prescription for adderall, so for about a month I was able to get my prescribed amount while there. However, fearing that it may be feeding my eating disorder they ended up taking me off of it. So for a long time I would sneak it in, getting sober enough to pass tests after home visits. Instead of working on my problems as much as I should have been it became mostly about how I could hide it. I wasn't getting necessarily getting 'high' while in treatment, but felt I couldn't getting completely sober. I would maintain myself on drugs and work on my other problems. 

I was let out of treatment after about 9 months and put into a girls home because my treatment team didn't feel like I could succeed at home. I was seeing the same therapist and saw her about once a week.     

   

However, without a prescription for adderall it was becoming hard to maintain and I had already decided to start using again. I started doing heavier drugs during this time, and was only able to stay out of treatment for two months. I got put back in on Christmas Eve. I had started self-harming again and not eating. This time when I went back in, though, I admitted to using drugs. I finally started working on what was the missing piece in my treatment. I got out of treatment shortly before my 18th birthday, and went home this time against the wishes of my doctors. They were pushing for me to go into the state hospital for further treatment, but I was able to convince my family that I would do fine at home.
Recovery at home wasn't easy. I started seeing a terrible therapist who didn't believe in eating disorders and told me I needed to pray more. I felt like I would die without drugs. Every day was a struggle to even get out of bed and function. Some days I wasn't able to get out of bed at all. I felt like I would die without it, but knew the depression from before. I knew the misery and loneliness I felt while using and felt that I would rather die than use. That is not to say that I didn't relapse at all. Recovery wasn't just a point in my life where it was clear and I just did it. I relapsed several times after treatment. Every time I knew I could die, but it was the only way of life that I knew. Drugs, my eating disorder, and self harm was all I knew for handling emotions. It takes a while to grow out of that. 

All I can say now is that it has been worth it in every single way to get sober. Overcoming these things was the hardest thing I have every had to do. Some days I still think about them, and it is still a struggle. I owe it to myself and my family to stay sober. I started dating my now husband when I was a year sober, and he has been with me through these struggles. It hasn't been easy for either of us, and I am thankful every day for the things he has helped me with. We have the most amazing little boy, and looking into his face I know I owe it to him to give him a mom who is there in every way for him. I can't do that when caught up in illness. Love for my family has finally pulled me completely away from this lifestyle. I'm a bigger weight than I want to be and instead of doing the things I thought I would be for now I am a stay at home mom, but the funny thing about it is that I'm happier than ever. Recovery didn't look like what I thought it would, but it's beautiful and worth it. 

I know this blog post is kind of chunky and parts don't flow well, it was hard to put into words my memories in a way I was comfortable with. I knew I wanted to share, just not exactly how or what I would share. Thank you for taking the time to read this. 

A Good Year

"You are BRAVER than you believe and STRONGER than you seem..." - Winnie The Pooh

  It's been about a year since Micah's surgery. There have been highs and there have been lows, but all in all things are so much better. Micah healed like a champion, and he grew like a weed! I remember last year, when Hirschsprung's Disease was such a huge part of our lives. I never thought that there would be a day that it wouldn't be the biggest part of every day, and yet here we are. So much has changed, and so much is better. 

Micah's Health Now:

If I could see Micah today while I was anticipating his surgery I wouldn't be nearly as worried about things. Last year I felt like I had the weight of the world on my shoulders. I was told that this surgery would not 'cure' his Hirschsprung's, and doctors even warned that the cons may outweigh the pros in the end. We were told that the surgery may cause more problems than it solved, and even that it could all be for nothing and that we could end up back here when Micah was an older child or teenager to have them give him a colostomy again. It's pretty hard to move ahead with a surgery and feel optimistic about it after hearing those things, but after the surgeons would give us these warnings and crush any optimism we had for the surgery they would always suggest we move ahead with it anyway. I'm happy that our surgeon has always been very honest with us and given us these warnings, and I know we can't really know for sure what his life will be like in the future because at the moment he is still in diapers. We can't know if leaking will effect his life so much that it wont be worth not having an ostomy. What we do know is that, for now, we consider the surgery a success. We are able to take Micah places without the fear we used to have that his bag would leak everywhere and we would have to run home, or even worse - try to attempt an ostomy change in public. We are able to take Micah to the store, to church, and even on play dates! It feels like a miracle that I can just walk out the door with him and take him places without being a nervous wreck! We no longer have to hold him down while he screams in pain to change his ostomy, we don't have to stress and fighting ostomy changes would bring, and best of all Micah started growing and developing his skills SO much faster than he had while he had an ostomy. He refused to do tummy time with a stoma, yet after healing from his surgery being on his stomach became his favorite position. Which made him stronger, and while he was a little behind on things like sitting up, crawling and walking he eventually got stronger and stronger and accomplished them all! Now Micah runs! There are digestive struggles, and now at 17 months he eats an assortment of some solids, formula, and purees. He does struggle with dumping, but that would be a problem with a colostomy as well. He is signed up to start a bowel management program in September, and hopefully they will be able to help us understand his digestion better than we do at the moment. 

Micah also still struggles with his heart problems, but since they upped his dose to significant amounts of his medication a couple months ago he hasn't had as many problems. We are still hoping that he will outgrow these problems, but the cardiologist says that the chances are fairly slim now and he will likely need the surgery. They are hoping to wait as long as possible now that he is responding to the medications better. It will be much safer to do the surgery when he is a bit older and weighs quite a bit more. 

And now, because Micah is so much more than his health problems....

Who Micah Is Now:

Micah is 17 months old, and runs almost everywhere. He has a lot of days where he is very cautious and is only happy sitting on my lap getting cuddles, but he is also coming out of his shell more. He has days where he runs all day long and is VERY vocal. I try to get him around other toddlers his age, and because I serve in nursery on Sundays at church he comes with me. I've noticed it help him a lot to be around other toddlers. He still doesn't like it if I go too far out of his sight, but now instead of crying and being terrified he will simply follow me most times. This makes cooking dinner a lot easier. He babbles a lot and can now say: Mama, Dada, Nana (my mom), yea, see, hi, no, up, Daisy, duck, and numnum. He blows kisses and pretends to talk on the phone all of the time. He recently started dancing, he loves when people clap and will clap along. His favorite book is 'Snuggle Puppy'. He is a complete Grandad's boy, and even had a sleepover with Grandad and Nana while Urian and I had an anniversary weekend. He has had two haircuts and is now due for his third. He loves all animals. In June we took our first vacation with him. He acts a lot like mommy and looks a lot like daddy. He is perfect. 

In short, none of his diagnosis has really held him back. He is  Mommy's Superhero!

Nanna And Baby

"A garden of love grows in a Grandmother's heart"

It has been so amazing and touching to see my mom with my son. Other than my husband and I, she was probably the one most effected by his diagnosis. She is certainly the one who understands what he is going through the best. 

My mom has a disease fairly similar to Micah, except that hers has no surgery to take it away, and effects her in many more serious ways. She has two stomas and it literally broke her heart to hear Micah would have to have one, even though his was not permanent. Every time he has been in pain she cries with him and is the first to ask me if everything is okay. She has so much love for this little boy, she says that she loves him like he is her own. Always saying that the love is no different. 

It's been a blessing to be able to be so close to them while going through this. My dad and her have taught me much more about caring for Micah, especially when he had his colostomy, than the doctors and nurses ever did. They always had tips and tricks that they would show us to make some part of it easier. Their knowledge comes from years of having to figure out an illness that not even the doctors know much about. I respect them so much more now, having had Micah, than I ever could have. Part of having Micah and his complications was being able to understand on a whole new level and appreciate the raw, beautiful love that they have for each other. It's been understanding a little bit more everything that my mom went through trying to parent while having this disease, and how she gave us more than I could have asked for. Micah, even with every other blessing aside, was a lesson and a blessing that I needed. This understanding is a gift, and I love my parents so much more now that I understand. 

There's no way I could have actually understood as much as I do now without having had Micah. It's like things HAD to have turned out this way. 

I'm lucky things turned out this way. I love you Micah, and I love you Mom. Thank you so so much for adopting me and giving me a life that I wouldn't have had otherwise. I've told you a million times since Micah's birth that Micah was meant to be my child, and since he was meant to be mine I had to be yours - otherwise I wouldn't have the strength and knowledge that being raised by you with your illness has given me. Otherwise I would have melted down when I saw him with a colostomy. Otherwise having him would have been harder. 

Thank you Mom, thank you Dad, and thank you Micah. I'm blessed to have you all exactly the way you are. 

Late Nights With Micah

A letter to my son. 

Micah, 

Some days you are difficult, but you always have a reason. The things we have to do to get you better sometimes make me want to cry. I know they hurt you, and I don't want to do them. I wish everything in your body was as perfect as you are. It's hard knowing that you don't understand, and when you look up at me like I've betrayed you it hurts me so so much. I know that there is no way to explain what we do to you, I just have to make up for it with extra cuddles. I hope one day you understand better that we aren't doing it to hurt you. 

Today when mommy had to dilate you, you screamed and screamed. I tried so hard to be gentle, but there's no denying that it hurts you. It helps you, though. After I was done you were able to go potty and your stomach was no longer as distended and hard! You felt so much better, but I could tell that your bum was still sore. While doing it you looked up at me with so much hurt and confusion in your eyes that I cried while I was finishing up. 

I wish you understood. I know one day you will. 

The best part of today was after you were able to go potty you forgave me with the biggest smile you had all day. It makes this all worth while.

I know my thoughts in this letter are scattered, but sometimes it's hard for mommy to get the words in order the same way they feel inside. One day, maybe, I'll be able to tell you better how all of this was for you and me and daddy, but today my thoughts are all over the place. I know you'll understand.

The only thing you really need to know is that mommy loves you more than life itself. I will always do what is best for you, even though it's hard for me. I will always wish you didn't have to go through this. I would take it all on myself if I could without giving it a second thought. One day I'll be able to tell you this and maybe you'll understand. 

For now, though, mommy will be strong for you when you're sad and hurting. Because that's what mommy can do to make it better... or at least not any worse.

Micah Is Pooped From Not Being Able To Poop

The title might be a little much, but it does make me smile so it's staying. And it's oh so true, because we are ALL tired of this sweet baby not being able to poop. 

Micah has scar tissue from the surgery closing up his colon and causing things to back up. We had two doctors miss it, even with them sticking their fingers up in there and feeling around, but finally our surgeon got back into town and we got to see her. She caught it pretty quickly, luckily. So when we were being diagnosed recently with enterocolitis? Yeah. He didn't have it. We were giving him antibiotics that he didn't need. Which makes me kind of upset because I hate giving him medications that he doesn't need. I also hate when I put my trust in a doctor and they miss something so important. It's annoying, and I know they're only human and it happens, but I feel like if they're going to say that they treat Hirschsprung's then they should know the common problems associated with it. That's just me, though, I guess. It's not like we can do much about it except hope that it's always our own surgeon on call. 

As always with Hirschsprung's, the treatment isn't glamorous. We got some numbing lubrication and a dilator stick that we put in his bum twice a day to stretch and break down the scar tissue. We do this for at least a month, maybe longer. And even though the lube has numbing medications in it, he can totally feel it. He screams so hard his face turns bright red. I hate it!!! I need to do it to help him, but I hate that it hurts him. There's so many things about this disease that hurt him and make him uncomfortable.... IF ONLY HE COULD JUST POOP! And he will be able to, one day, without any help from us. We'll get there. It's just discouraging that there's always something else happening to stop us from getting there. We're lucky to have such a good surgeon that catches these things quickly. 

So moms, if your baby is only pooping small amounts at a time after surgery, I would take them in and ask them specifically to look for this. Micah was bleeding, but it wasn't from infection it was from the stitches in his colon. Micah was distended from the poop backing up and the blood was brighter red than from enterocolitis. He was also very fussy. 

Q&A from last time:
Our little guy ended up staying for two weeks in the hospital, we had to change our plans because we had only planned on being there for one week. I would for sure plan for a little extra time just in case. It sometimes takes longer for their systems to wake up, which was the case for our little guy. 

As always you can ask questions if you want. I know that it made it easier on me talking to other moms who had been through this. 

So... we're home... now what???

We're home, at we couldn't be happier... or busier! This journey we call Hirschsprung's is long from over, but we're up for the challenge. So this is how it has been being home.

We got home, and it was like bringing him home from the NICU all over again! I had him dressed up real cute, and held him close to me as we walked through the door. This time around we couldn't give him a bath right when we got home, because he had steri strips on his incisions. We thought we would be able to get some rest and relax now that we were home, but who were we kidding? You never get to relax with a baby! 

Mr. Micah was super fussy for many days, and he didn't want to play. He was, and is, still healing from surgery and all he wanted to do was be held and sung to. This included all hours of the night, by the way. Also, it wasn't very long before he developed a bleeding diaper rash, and although we had been warned and prepared that it would happen I felt terrible. No matter how quickly I change his diaper, or what I put on it it is still there. I feel like a bad mother a lot of times when I look at it. I feel like I'm not doing a good enough job and that I shouldn't have let this happen. The truth, though, is that I didn't 'let it happen'. I don't let it sit on his bum, no matter what time it is. I check him frequently throughout the day. I use the recommended creams, and I keep it dry. I do everything the doctors have said to do, and I'm still at a loss with it. I would be interested to hear of anybody else's experience with this and what they did? If you have any suggestions please comment below. 

It also wasn't long before sweet Micah developed Enterocolitis. He suddenly stopped eating well, and he wasn't having very many bowel movements. What he was having had absolutely no solidity to it and smelled bad. Like... really bad. He had a slight fever, so I knew that we would have to take him to the surgeons the next day. When we took him they sent us for blood work and x-rays, and nothing came up. Just to be safe, though, they tested his bum with their finger. Blood came out, which is a sign of infection. So when the doctor came in he decided to give Micah an irrigation with a catheter and saline, and the results made him diagnose Micah with Enterocolitis... again. This is his third time, and he's only five months old! We've irrigated him most of his life, pre-op and now post-op. We've also treated him with probiotics for much of that time. The doctors have said that it's nothing we're doing, and that there isn't anything more that we could be doing. I feel helpless, and those of you who know me know that I hate being out of control. I want to help my baby be as healthy as he can, and these infections are really very scary. The doctors told us that it's a good thing we caught it so early, otherwise this one could have been real serious. 

So I'm reaching out to the community - anybody who reads my blog and may have a baby with Hirschsprung's. Is there more I could be doing? 

Also, anybody with any questions, Micah related, Hirschsprung's, or about myself or our life - please ask. My next post will include answers to them. I get private messages on FB a lot asking questions and maybe it would do more good to answer some of them on here so that other baby mammas who are struggling with the same things can get answers. Or just to answer to your curiosity. I don't really care, ask away. 

Thank you, all of you who read this.