Hospital PTSD

Before Micah was born I had already had a lot of experiences with hospitals. My mom struggles with her health, and was in hospitals or flying back to the Mayo Clinic a lot of the time. It's been normal for me, just another part of life. However, when Micah was admitted into the NICU after birth I had the weird combination of heart-crumbling-numbness. 

When your child is in the hospital it's all business. You need to be able to put emotions aside to a degree and make the best decisions possible. His life depended on it, and I was pretty good at it. Things were always moving so fast, and I was always so busy being his calm and comfort, that I never really had a chance to process things and really FEEL that fear and mourn what was happening. I dealt with the feelings that were absolutely necessary and then pushed them away to deal with later. 

Now that things are slower and things aren't quite as intense these feelings have been creeping up. I'll be watching a show and be ambushed my an unexpected hospital scene, and just like that my world will crumble all over again. I feel the fear and the sadness as I hear familiar medical terms and I'll be a puddle of tears. Have you ever noticed how many hospital scenes there are in shows? Too many. 

Suddenly I understand why my mom didn't want anybody in the house watching HOUSE and E.R. when we were growing up. I understand wanting a safe place away from medical problems, how after experiencing it these 'medical mysteries' aren't entertaining. The times where Micah was first diagnosed, so many infections, and when they thought he may have cancer... these scenes haunt me now. The knowledge that losing my child has ever even been a possibility is sometimes too much to think about. 

I don't know how or when this gets better, but I do know that I've made a commitment to process these things and work through them. And, for right now, I will look at my son's smile and realize that it's okay right now, and will hopefully continue being okay.

Rare Disease Day

This year February 29th marked not only my husband's birthday, but the 9th annual Rare Disease Day. Every year on the last day of February people rally together to bring awareness for rare diseases and raise money for research. These diseases are often overlooked and forgotten, most people never have a need to learn about any of them. This is a wonderful opportunity to learn more about often life threatening diseases that people struggle with every day. 

In March, 2013 my little family added Micah as it's newest addition. The days that followed were both the best and worst of my life. Something that made it a little easier was that I have an amazing mom who battles a very similar disease as the one Micah does. Knowledge was an incredible ally to have. The following is our journey with Micah's own rare disease.

March 23, 2013

On March 23, 2013 our first child was born perfectly into this world after 8 hours of labor. He weighed just over 7 pounds and was the most peaceful newborn baby I had ever met. He slept great and hardly ever cried! He nursed great for the 24 hours, and was such a cuddly baby. It was a relief because I had suffered major anxiety during pregnancy worrying about his health. He had tried to come early several times, when I reached 21 weeks I remember celebrating because now he was seen as viable and if he came early the doctors would try to save him. I worried about all sorts of diseases even though the ultrasound technicians always assured me he looked perfect. I finally felt at peace holding him in my arms and watching him breathe. 

The next day Micah started to show the first signs of struggling. He turned a yellow color from jaundice, and he stopped eating. The nurses said he was okay and showed me how to feed him with a spoon. The problem was when we could get him to eat he would throw it up! I would call the nurses in after and they repeatedly assured me that he was spitting up, not throwing up. I fought them on this telling them I had extreme morning sickness all throughout my pregnancy. I KNEW what throwup smelt like. This was green and smelled of bile, I was starting to think I was crazy from the way they treated me. That same day they told me that if he didn't have a bowel movement he would have to stay, yet they stilled denied that he was throwing up. 

The charge nurse came to visit us and speak about our options since he hadn't pooped yet. When she came in I desperately showed her a blanket that Micah had thrown up on. Her face became serious and she quickly left the room to bag the blanket and put a note on it. Our son was throwing up bile, and finally a nurse acknowledged that. Micah was moved to the hospital's special care unit right after that. We were told I was okay to leave, but that I could stay in the hospital on 'Hotel Stay' if I wanted. 

March 26, 2013

On March 26, 2013 we were told that Micah needed to be taken to Primary Children's Hospital for some tests, but that he would come back to the hospital he was in afterwards. I insisted on riding along in the ambulance with Micah as I couldn't imagine my baby being without me during the ride. I was worried, and being able to ride with him was one thing I could control. They agreed and off we went! When we arrived Micah was taken to imaging to get a barium enema. According to the Mayo Clinic a barium enema is "an X-ray exam that can detect changes or abnormalities in the large intestine (colon). The procedure is also called a colon X-ray. An enema is the injection of a liquid into your rectum through a small tube." We were lucky to be working with people during this that were professional, yet had a great sense of humor. They explained everything and even involved us in the procedure, and knew exactly when would be appropriate while explaining the process to make a small joke. They were very relaxed and seemed like they had done this millions of times, it really helped. 

After they had finished they told us that it looked like this was something Micah would grow out of and that in their opinion he could be sent home. We were ecstatic! I rode back to the hospital with my husband to be able to talk to him, we couldn't wait to bring our son home! When we pulled into the hospital we got a call, and my heart sank. It was the paramedic calling to tell us that a head surgeon had looked over the test Micah just had and told them to turn around and bring him back. He could no longer be treated at the hospital we were at, he needed to be in the NICU at the children's hospital. 

I'll never forget my phone call to my dad on our way back. I call and told him Micah was transferred to be in the NICU, that we didn't know what was wrong but that it was something serious. I told him Micah couldn't come home and that I was scared and didn't know what was going on. He said he would be at the hospital as soon as he could, and then we hung up. I was numb when we walked into Primary Children's. We got our badges to enter the NICU and went to the elevators. None of it seemed real, not even when we scrubbed up to our elbows preparing to see our son. It finally became real when a surgeon walked into the scrubbing room. She told us her name was Dr. Meyers and that our son was very sick, but that she think she knew what was wrong. She explained that on the image from the enema half of his colon looked small and restricted, then the top half looked normal. She said she would need to biopsy his colon and then we would know more. I was then handed intake papers, and on the diagnosis line I read the word's "Hirschsprung's Disease". 

I wasn't prepared for what I saw when I walked into the room to see Micah. When I had last seen him less than an hour ago he looked normal. He had only had an IV in and other than throwing up he was acting like any other newborn. The baby I was directed to was in a crib under a light to help his jaundice. He had an IV, an anderson tube going into his mouth, oxygen, heart monitors, a pulse ox, and a covering over his eyes. I went over and stroked my little angel, holding back tears from seeing him so sick. 

The nurse we had that night will forever be my favorite nurse we've ever had. She explained to NICU to us and brought me a reclining chair so I could put my feet up. She told us not to go home and google what Hirschsprung's was as it wouldn't help, it would only worry us needlessly. She told us it's a rare disease, but that they usually have one baby at a time in the NICU with it. At this point I hadn't done much in the way of relaxing and allowing my body to recover from giving birth, and it showed. I had hemorraged during labor, and I was weak and now swollen from being up all day. She told us we couldn't do anything here tonight and that I needed to allow myself to heal for when I could take care of Micah. She told us to go home, so we hesitantly left. 

Going home was harder than I thought it would be. Seeing his bassinet next to the bed was too much for me and I went to lay in the bath and cry. This wasn't the way it was supposed to be, I was supposed to be wheeled out of the hospital with my baby. I was supposed to bring him home in his special coming home outfit and give him his first bath before feeding him and putting him to bed. I wasn't supposed to be home without my baby in my arms, but that's the way it was. 

March 27, 2013

On March 27, 2013 they did a rectal biopsy which ended up confirmed the diagnosis of Hirschsprung's Disease. At this point I couldn't resist and looked up what this disease was on google. According to the Mayo Clinic Hirschsprung's Disease is a disease that affects the large intestine. It is caused by not having nerves in parts of, the intestinal tract making it impossible to move stool through. I would later learn that while it most commonly affects the large intestine it can also go up into the small intestine. Around 70% of cases are a short section where they can do a pull through surgery immediately. 20% have what is considered a long segment and can extend all the way up to the small intestine, 9% have it going slightly into the small intestine and in 1% it can go all the way up to the stomach. In many babies with Hirschsprung's the first sign is not being able to pass stool after birth, and then becoming distended and unable to eat or keep food down. Hirschsprung's appears in around 1 our of 5,000 live births, most commonly in males and often found in people with downs syndrome. Hirschsprung's is not a disease that can be cured, and most often will continue to affect patients for their entire lives. Early treatment includes having an ostomy for long segment, and then later on after healing opting for a pull through surgery to remove any of the affected intestine. 

We were told to expect Micah to have Long Segment Hirschsprung's Disease because of what they saw on his images. In the same conversation we were told that Micah's biopsy had come back confirming Hirschsprung's we were told that his surgery was scheduled for that friday morning and that he would likely be getting a colostomy bag and not the pull through because of him being Long Segment. At this point we went down to eat lunch and process what we had been told. I broke down crying trying to come to terms with our son having this disease and needing a colostomy bag. My mom has 2 ostomy bags and I've seen how much it effects her. I've watched her tie sweaters around the bags hiding them and asking me if she smelled. Of course she never did smell, but she was always sure she did and self concious because of it. I've watched her miss out on important events in mine and my sibling's lives because she was afraid she would have an ostomy leak and because she didn't want people to see her. I grew up watching my mom cry in pain and nearly die several times. It scared me half to death that my son would have to go through any of this. It isn't the life I wanted for him. I had had visions of him running and playing with friends, being a rambunctious little boy. It took me a long time to realize that the situation is what you make it. Having an ostomy doesn't mean you have to hide away and not be a normal little kid. Having an ostomy is just something that is sometimes necessary medically, and you can still do anything anybody else can. It means you're a fighter! 

That was the last time I cried about Micah's diagnosis. I've felt sad sometimes, and scared a lot of times. Yet, it was after that time that I realized I needed to keep it together to be the best mother and advocate for Micah. He needed me to be the strong one, so that's what I became. Something happens when you have a child diagnosed with a serious disease - you realize you can do things you never thought you could. I've put NG tubes in my son, I've held him down while they put tubes in while he screamed and asked me why, I've handed my son over to surgeons and I've held him while he pukes on me. I've tried to do this all in a calm, neutral and confident way. Never crying, my son even as a newborn was watching me to see if things were okay. If I was crying hysterically I wouldn't be able to be there for him and he would be scared seeing me. He already had enough to deal with without me losing it. 

March 29, 2013

March 29, 2013 I handed my tiny son over to surgeons for the first time. We walked down as far as we were allowed and then gave him hugs and kisses. In surgery they would biopsy his intestines slowly up until they found nerves. If it was only a short segment of intestine without nerves they would take out that small section and pull the rest down reconnecting it. If, however, it was a long segment they would create a stoma for a colostomy. A stoma is where they make an incision and bring part of the intestine to the surface. They make an opening in the intestine so that stool can exit through there. After a few hours in the waiting room without receiving a call to inform us they had found nerves we knew it wasn't going to be short segment. Sure enough we got the call, half of Micah's colon was without nerves and he would need a colostomy. 

Micah recovered quickly from the surgery, and now that he wasn't as sickly his personality started to come forward. He cried hard and was no longer a quiet peaceful little baby. He loved music and made it known when he wasn't happy. There were literally times when we were walking down the hall to the NICU and I would hear a baby crying and know it was him. He became a fierce little guy. As much as I hadn't wanted that colostomy it had given me my baby back. He finally had energy to cry!

It took us a while to be able to take him home because he wouldn't eat. He COULD eat, but he wouldn't. Micah ended up being in there for exactly a month. 

After Coming Home

Micah came home with his colostomy, and while it was a struggle to care for a colostomy we learned how to handle it. In August of 2013 Micah was able to receive his pull through surgery, removing half of his colon. He was in the hospital for another month, and we learned during that stay that Micah also had a heart defect called Wolf-Parkinson-White syndrome. This means he had an extra pathway in his heart causing it to be too fast. When it was diagnosed his heart rate was 311. He was put on medicine and we learned how to handle it just like we had his Hirschsprung's. 

Micah has continually gotten infections in his bowels. This is called enterocolitis, and it is very serious. Aboutkidsgi.org says "Enterocolitis is a clinical diagnosis. The symptoms of early enterocolitis may be indistinguishable from a simple viral gastroenteritis: diarrhea, bellyache, a little fever, maybe some vomiting. Because enterocolitis can progress rapidly and even result in death, most pediatric surgeons like to err on the side of caution and treat it with irrigations, antibiotics, and iv fluids even if they’re not sure of the diagnosis."  Enterocolitis is the leading cause of death in Hirschsprung's patients, and is something we worry about every day. 

One day Micah was his normal funny, playful self all morning and I put him down for a nap. I sent my husband to wake him up three hours later as he still hadn't woken up. My husband ran up saying that Micah felt hot and wanted the thermometer. It turns out that in that short amount of time Micah had gone septic with enterocolitis and had a fever of 105. The knowledge that my baby boy can be fine one minute and deathly ill another minute scares me. It is something we've had to live with and haven't gotten any answers from doctors. We continue to try and find ways to prevent this from happening. 

Micah is now almost 3 years old, and he continues to amaze me. Even when he is sick or in the hospital this kid keeps laughing and playing! Nurses have commented that it's amazing how he hardly ever slows down. Hirschsprung's is part of his life, but we fight for it to be a small part. He is smart and funny. He loves to joke around and get others to laugh! He wants to be everywhere at once, and soaks up knowledge. He is now his target weight and continues to grow. Micah is the type of kid who walks into a room full of people and says 'Hello Friends!' He loves cuddling on my lap, and if I leave the room to get something he always runs to me and gives me a hug. 

Having a child with a rare disease has taught me:

How strong the human spirit is, I am amazed at how Micah keeps fighting and never gets discouraged. 

That sometimes I need to stand up to nurses and doctors because I know my child best. It's hard to do, I tend to not like to make waves, but it is necessary. I've had to be a strong willed advocate in getting my son proper treatment that has been the difference between him getting to the point of being deathly ill and treating him before it gets to that point. 

Not everybody understand, and that's okay. Most people are lucky to never have to deal with caring for a sick child. Sometimes even extended family doesn't full understand why we can't attend family funtions, but that's okay. We know we're doing what is best for our son, and everything else is so much lower on the priority list that we don't even notice it. I know there have been hurt feelings and misunderstandings, and that's okay too. I hope people learn more and know that our only intention is to protect our son. 

Even though something difficult is going on that doesn't mean life is bad. We're incredibly lucky that Micah's disease is treatable, and even more lucky that we even have him with us. We have a sick child, but there is so much to be thankful for! His illness, and everything that comes with it, are just a part of life. Feeling bad about it, or fighting it, doesn't help. 

We can handle literally anything. Seriously, the biggest thing that this has taught me is we can accomplish so much! I now try to have the attitude that no matter what happens we'll get through it. I have an awesome husband who makes me laugh and we have a kid who we love to death. Even when things get hard, we can get through it. Currently a worry is my husband finding a job for when he graduates in May. I've come to the conclusion that even if it takes a while to find a job, we'll be okay. We may not be able to spend money on fun things for a while, or move as quickly as we would like.... but it's okay. I try to ask myself "What's the worst than can happen, and so what if it does?" and seriously.... short of somebody dying I've learned it's just something we'll get through. 

Realization

I know it's been a long time since I have blogged, however I have gone over this topic in my head for the past two months now not really knowing if I wanted to put it all down into words. 

About two months ago after a completely normal day, where Micah was energetic and ate a normal amount, I sent my husband to wake Micah up from his nap because he had been sleeping for too long. The next thing I knew Urian was hurrying up the stairs saying that Micah had a fever. When it comes to Micah and his health problems we usually do a lot of listening to our gut on what we should do. When it's time to head straight to the hospital you just know. And that is what we did.

When we got to the hospital his fever was 105 and he was very lethargic. We didn't even have to wait in the waiting room, they got us straight back. We walked into the room and there were already around 3 nurses and a doctor already in there waiting for him. They put him on septic protocol, and he was soon admitted to inpatient and put on a couple of antibiotics. 

In the days that followed there were a lot of tests, all resulting in nothing. Labs hardly ever reveal what the exact bacteria is. However, this is the first time they started saying they were concerned about what his lab results were saying about his blood. I was sitting in his room comforting him a couple of days into his hospitalization when a pediatric doctor came in to talk to me. He said that they weren't sure what was going on, but that they wanted to test for several things - one of those things being cancer in his blood. I have rarely seen a doctor so kind, as he sat on the ground next to Micah and started talking to Micah about Elmo and singing songs to him to make him more comfortable as he examined him. Even as I was shocked at what he had just talked to me about, I did really appreciate the way he treated Micah as a human being and not as another diagnosis. 

We waited days for the results, and although his blood did show many worrying things (such as an extremely low white count, Poikilocytosis, Burr Cells and Atypical Lymph) they did come to the conclusion that it wasn't cancer, and rather a possibility of a different blood disorder that was being affected by his infection. 

During his hospitalization, as Micah lay lethargic in a hospital wagon that I would pull around to soothe him, I thought a lot. This was the first time I really thought about the possibility of Micah getting so sick that one day he might not recover from an infection. I had talked with parents online, and I had heard the stories of children with Hirschsprung's Disease getting an infection that goes septic. I had heard about the deaths, and the warnings the parent's of those angel children give to the other parents on the forums. However, we've always been very lucky. Micah had never been septic before this time, and he had always responded to the medications. So even though I knew logically that sometimes these kids don't make it I had never really connected that possibility emotionally to our own situation. And let me tell you, there is no way to put into words how that feels. I was honestly floored by the realization. 

It was hard watching Micah be so sick. He is a toddler who is so completely full of life, who never slows down for anything. Yet he laid in the wagon not even turning his head when we passed things or when spoken to. He slept through painful medical procedures. 

Over the days he slowly regained his personality, and although it took him a while he began sitting up in the wagon and interacting. Slowly he started wanting to walk instead of sitting, and then he wanted to play. And then we got to go home, and start returning to a normal life. 

I am thankful to the hospital staff we had. The nurses who stroked his forehead and covered him in icepacks to bring down his fever. I'm thankful to the nurses who sought out sesame street books to give him when he was too weak to play, but enjoyed looking at books. When they would order him food even though we knew he probably wouldn't eat it. To the doctors who treated him like any other toddler even when he wasn't reactive enough to care. To all of the staff who treated him like a child in need of kindness. The nurse who took him to a balcony to watch the fireworks even though he wouldn't have known he had missed anything. I'm thankful that when he was hurting so badly, they cared and how they made it their mission to make him comfortable. I'm thankful that some of them visited even when they weren't assigned to him. 

I'm amazed at so much kindness I witnessed. I'm amazed that even though we didn't want to be there, I'm thankful that I got to share my son with them because I know that he received an incredible amount of love from them. 

The grass is greener on THIS side

I hear people say 'The grass is always greener on the other side'. However, when I was in the NICU with Micah, a few days after he was born, I pondered that saying. Looking around that hospital made me realize just how green my own grass was. My son, while quite ill, was born with all of his limbs. He took a breath after he was born, and we were never told that he was going to die.

Now, two years later, I realize that Micah (like most babies) is the best example I know of having a positive attitude. He continually seems unphased by much of what goes on inside of his body. His only wish in life is to move and explore, and to him there's no reason he shouldn't be able to. Unlike most of us, he doesn't let things get in his way or drag him down. Sure, when Curious George comes on the TV when he was really wanting to watch Sesame Street he gets a little upset. But how would it be to have so many health problems and trials in life, yet to have the attitude that the worst thing going on in that moment is that Elmo isn't singing?

When Micah was in the NICU I will overcome with worry for his health, and grief for the situation. It was easy to feel down while basically living at the hospital and seeing him so sick under the lights. Micah, however, was one of the happiest babies I had ever seen. I had never realized how much personality a newborn could have until I was his mom. He had a surgery which confirmed the news that he had Long Segment Hirschsprung's Disease, yet a few days after the painful surgery in which he received his colostomy he smiled his very first smile. This is when I basically kicked myself in the butt and felt so incredibly stupid for focusing on so many negative things. After all, he was the one going through all of the pain and being effected first hand. If he was strong enough and determined enough to be such a happy baby, then what right did I have to let this diagnosis consume us?

He came home from the hospital when he was a month old. Much of my time was spent researching his disease, and figuring out the very best way to care for him. Hirschsprung's Disease was such a big part of my life during this time. Micah, on the other hand, didn't even seem to notice the intestine that was sticking out from his abdomen. He did all of the things normal babies do, and loved seeing and exploring everything he could. All through those months of having skin ulcers, failure to thrive, and serious infections, he smiled. He didn't seem to have any comprehension of the many health trials he continually had. In fact, the only thing he disliked in life was bath time. Typical boy.

Time for surgery rolled around, and while he didn't enjoy any of the procedures that came with being in the hospital he never seemed to dwell on them. He would be unhappy and cry in pain when things were happening, yet as soon as they were over he would be smiling again. One night his heart monitor started going crazy as he lay happily in the crib. He was so calm and happy the nurses thought it must be a monitor problem, it took them listening to his heart and calling in doctors to even be convinced there was a problem. Of course, when they realized something actually was happening they did get very serious and worried for him - but because he was so content it took a while. All during the EKGs and his heart rate climbing to 311 he simply coo'ed and laid in his crib.

Skipping ahead to more recent events, Micah has had 8 confirmed cases of enterocolitis in his 2 years of life. Colitis is an extremely painful, very dangerous problem. The most recent time it was hard to get him diagnosed because he would be screaming in agony, and then by the time we would get him to the hospital the pain had subsided just enough for him to be his playful little self. He would literally be in the emergency room with a bloated belly, throwing up everything, and at the same time he would be watching tv and playing. We were told multiple times that he was much too happy to have enterocolitis. This all ended in him becoming seriously ill, with an alkeline phosophate level in the thousands, with a huge stomach. We went in for an appointment with our regular surgeon and he was lethargic, throwing up, flushed cheeks and unresponsive when touched and spoken to. She hospitalized him immediately upon seeing him, yet that same night nurses were commenting on how happy he was. Throughout his week long stay I had to repeatedly be his advocate when surgeons (ones who weren't his regular assigned surgeon) would take one look at him and say he wasn't sick enough to be hospitalized. I would have to point out his lab work and explain his personality before they would agree he needed to be there. It was exhausting racing to the hospital early each morning, needing to be there before the surgeons did their rounds to assure he wouldn't be released prematurely as he had been for the past month.

Even today, as I spend over an hour on the phone with the surgeons office trying to get answers for why several times a week he'll refuse a meal and then scream until his face is bright red, unable to pass stool until pressure has built and he's doubled over with cramps. I speak on the phone while he dances to the music playing on Elmo in Grouchland, seemingly unaware that anything is wrong in the world. Because Micah lives in the moment in ways I can only dream of and work towards. 

 I don't mean this to come across as though Micah is always perfectly and incredibly joyous. He does have his struggles, and like anybody he feels pain and reacts to it. Micah has struggles I can't even comprehend, because I have been blessed enough not to have these problems in my own body. There are times I cry because he's in such obvious pain and I feel helpless with no way to take it away. My point in writing this post is that, yes Micah has incredible trials in life - but those struggles are not what define him. He doesn't LET his physical setbacks define him. He shows me every day that we are all much more than the cards we are dealt. Micah isn't Hirschsprung's Disease. Micah is pure energy and curiosity. He is strength and laughter, somebody who loves it when other people laugh. He's the little boy who calls me mom and will stop playing just to come and give me kisses. He's inspiration, a little boy who sees the world as a magical happy place instead of letting any bad experiences he's had cloud his vision. When I sing 'You Are My Sunshine' to him at night, there are no truer words. Micah is pure sunshine.

I wonder at what age it is we start to let negativity consume our worlds? When is it that instead of noticing all of the wonderful things in life, we instead dwell on the few bad things?

When I grow up I want to be like Micah. Living in the moment, and letting each trial pass naturally without holding on to them. Knowing pain, but choosing joy. What an amazing way to live that would be.

Is the CDC sending the wrong message?

This afternoon while watching a show online a commercial came on. This commercial was the newest in a long line of commercials the CDC puts out about the dangers of smoking. At first I didn't pay close attention, but then something caught my attention. The woman in the commercial began talking about stomach problems caused by her smoking. It was then found that she had a tumor and needed some of her colon removed, resulting in her need for a colostomy. She speaks of how having a colostomy means loss of control, smelling bad, and the need to hide away at home giving up a normal life. 

Now, I understand where she is coming from saying these things, I really do. As the daughter of an amazing woman with two stomas, and the mother of a Hirschsprung's baby who needed a colostomy for four months I have witnessed the toll it can take on everyday living. However, is this really the message I want shown to my son who may, one day, decide to return to having an ostomy because of the digestive problems that come with his disease? I have such mixed feelings on this commercial, and here is why.

1. The message it sends to those with an ostomy. When my son grows older he may decide to return to having an ostomy. He has Long Segment Hirschsprung's Disease and has battled many digestive problems and infections that it comes with. IF he does choose to live with an ostomy I don't want him to feel as though he is being punished for being different. I also don't want him feeling as if he should be hidden away from society. My mom struggles a lot with her self confidence as a direct result of having her ostomies. She doesn't like to go outside, and when she does she worries constantly about the appearance and smell of them. She lived a very healthy and active life before getting sick, never once smoking a cigarette. One thing that has helped her is the normalizing of these conditions in media and society. The message that helps her, and the one that I would want my son growing up hearing, is not one of shame. It's one of empowerment and normality when it comes to having an ostomy! The stories I love seeing are ones of athletes competing with an ostomy, and ones of people having succeeded in creating a normal life for themselves. While I understand the downsides to having a colostomy bag, do we really need to send the message to children who will have them their entire lives that it means they are smelly and not socially acceptable? 

2. It gives a wrong view of what living with an ostomy looks like. I disagree with the view it gives into living with an ostomy. For this part of my post I would just like to share some pictures of what my family's experience with having them be a part of our lives has looked like. 

The goal is not to focus on the negative when it comes to these conditions, the goal is to tell the world that nothing will hold them back! The goal isn't to make them seem disgusting, it's to show that these are normal people and their disease (ostomy included) is only a small part of who they are. Having a stoma is not only a life saving measure to some people, but a way to make their lives more normal! Sometimes a disease is so bad that having a colostomy can allow them to live their lives in a normal and relatively pain free way. 

3. It's a set back in the education regarding stomas. The things I have posted about above are not represented in the commercial. What the commercial shows is not what many of those dealing with an ostomy, or their family members, want you to know. The kids going to school with these, especially, just want you to know that they are just like everybody else. They are strong and playful, and it is harmful to them when the message their classmates have been given catagorizes them as different and smelly. The ostomy community has worked hard recently with such campaigns as 'Shit Happens' to bring attention to the amazing aspects of those living with an ostomy. It's a really sad fact that some people will be basing their opinions of ostomy-life on this commercial. 

To sign a petition to remove this commercial please click here: https://www.change.org/p/centers-for-disease-control-and-prevention-remove-tobacco-colon-cancer-advertisement?recruiter=5323677&utm_source=share_petition&utm_medium=facebook&utm_campaign=share_facebook_responsive&utm_term=mob-xs-share_petition-custom_msg

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!

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. 

Home at last!

Okay, I haven't blogged a lot recently, but it's for the most excellent reason ever. ... WE'RE HOME!

I guess I should catch everybody up on the things that happened while I wasn't writing. So here it is:

So they tried to put an NJ tube down his nose to help wake up his system and take away some of the hunger pains. When they brought him back he had blood in and around his nose, but no tube. It wasn't pretty. I guess they had tried a few different tubes and even two different radiologists to get the tube down, and an hour later his nose was bleeding and his stomach was bleeding from being poked, but his sphincter at the bottom of his stomach just wouldn't open up and let the tube in. It was clenched shut and asleep. 

To make things worse, I got sick that night and had to leave the hospital because I was afraid that Micah would get it. However, after a good night and most of the morning sleep I felt good again. I went back to the hospital and got a lecture from our favorite nurses that I need to take better care of myself and not run myself down, and that if I needed to go home to sleep then I needed to do that. Micah started having problems that night though, and there was no way you can drag me away from my baby when he's in trouble. At around eleven Micah's heart rate started going from 150 to 311 and jumping around everywhere in between. The nurse started panicking, and that just made things worse. 

Please, please, PLEASE if you are a nurse, this is for you. I, personally, count on you guys to keep your cool in any situation. I know you've worked here for a while, I ask questions about all of the nurses before they get there and take care of my baby. So seeing you freak out, I'm sitting there going 'Okay, this nurse has worked here for a while. She sees lots of sick babies and has been in quite a few situations. If she is panicking like this then it must be something really bad. I knew that this wasn't normal, but now I think it's terrible.' And I'm guessing that's going to be more than just my own personal reaction. Please, if you're scared don't show it. Nothing is scarier than having something wrong with your baby, the panic just makes it worse. The thing I appreciated most about the NICU nurses was that even when things were going bad they like seeped of confidence. They gave off the attitude that they had seen this before and could handle it, and that even though it wasn't normal it wasn't the worst thing on earth. I appreciate the job that you do, you've helped heal my baby at least equal to the doctors if not more. They may have done the surgery, but you healed him after it. Thank you... just.... don't panic. 

Anyway, everybody in the room was on edge, and they ordered an EKG and they drew blood for labs, and they did a chest x-ray. The surgeon on call handled things a lot better, telling me this was probably something that they had done that they could fix easily. Whether it be an imbalance of electrolytes or the PICC line being in too far that it could tickle his heart, they were going to figure it out. So we waited, and I swear I could have powered that room with my pacing, and when I was sitting I still could have with the way my leg was vibrating. I just wanted to hear they could fix it. I didn't want another problem, and I really didn't think I could handle something more being added to my plate. 

Life happens that way sometimes, though, and they couldn't give me answers. I knew we were being moved to the cardiology unit closer to the surgeons before they said it. I calmed down the way I do when I know I'm going to have to deal with something difficult, and I just stood up and started packing. I told Urian that he needed to pack too, and together we just focused on what we needed to get done. 

There's nothing like being in that state of mind. It's no longer a matter of if something is wrong, it's a matter of what is wrong, and you know being scared and crying wont help it. You feel like crying at first, but then you just know that, for the sake of your baby, you need to get things done and get the answers you need. And in that moment, it was packing and moving to the next unit. 

The nurse did end up coming in and telling us we were being moved immediately, and we were ready to go. When we got there the nurse and the tech hooked him up to even more wires. They called the main cardiologist from his home, and pretty soon we had an entire team in the room. The cardiologist listened to him for MAYBE five minutes before they went to talk in the hall. A half hour that they had a diagnosis. 

Micah has Supraventricular Tachycardia. He has an extra pathway in his heart that allows the electricity to loop back around the the beginning over and over again, and makes it beat faster and faster. It can be handled with medications, and in a year if it hasn't taken care of itself they'll go in and freeze the pathway. Really, as far as heart things go, we'll take this one. It can be handled with hopefully no surgery, and even if they have to go in it's just an overnight stay. They caught it early, so it isn't very risky. We're thankful that they caught it when they did.

Micah was pretty bored the next few days, still not able to to leave his room or eat. His boredom was almost humorous, if it hadn't been so sad. After a few days of this, though, things started to go uphill. His stomach finally started to wake up, and open up. He was able to start eating, and an echocardiogram showed that there wasn't any damage due to his heart from his SVT. They found that a hole in the top of his heart didn't close with birth, but they theorize that it will close itself up in time. And if they aren't worried about it then we aren't. 

Soon, on the 21st, we were told we could leave! It was really just like that, they came in and told us we could leave! I think they were waiting till the last minute to make sure everything was okay so that they wouldn't get our hopes up just to take it all away. 

I'll post tomorrow afternoon about our experience being home. I can answer questions in the comments and tomorrow I will actually be asking a few questions for other moms of Hirschsprung's babies that I would appreciate being answered in the comments. 

To My Son

"Don't give up, the beginning is always the hardest."

Dear Micah,

You're only four months old right now, and you've already been through more health struggles than most adults have had. You have shown me strength when I didn't know how I would go on, and you have shown me what instant love is when I didn't understand how it would be possible. You've smiled through it all, and in that you've shown me not to dwell on the negative. 

You weren't a planned baby, but you were always a wanted and loved baby. I was so scared when I found out about you, I cried and cried wondering how we were going to take care of you. I worried that I wouldn't know the right ways to love and take care of you. Little did I know it would all happen and fall into place the instant I met you. It clicked the moment you looked into my eyes, and I knew that no matter what we would be okay. It's a good thing you gave me that confidence, too, because a couple days later I also learned what real fear was. 

Now that you've had your surgery I know even more about you. I already knew you were strong, but now I know you're determined and stubborn, just like your father and me. I know that you those traits to plow through any trial that gets in your way. This experience has taught me that love can heal, and right now, when I can't even give you the food you cry for, it's all I can do to help you through this. Thank you for letting me borrow your strength during your surgery, because I know that it wasn't my own strength. I know that you helped me through it, even as you were undergoing a very intense surgery. 

Your smile means the world to me, Micah, and even on my worst days it will make me smile through the tears. Every time you smile in your hospital bed it makes me wonder why I'm so stressed and sad about the situation. If you, the four month old baby who is in pain and in the hospital with complications, can smile then so can I. Micah, you've taught me a lot about life, and a lot about not giving things the power to ruin your day. Thank you for that. 

When I go to get food while your asleep I talk to the other families. We have it so good, my sweet baby. We have never had to talk too seriously about if you didn't make it. I feel thankful for that, and thankful for the problems we have. It could be so much worse, and yet it isn't. It's so easy to get wrapped up in your own problems and not see how good you have it. I'll take you and your Hirschsprung's any day over something that will kill you. I would take you and whatever disease you had as long as it meant that I could spend forever loving you. 

Finally, thank you for letting me be your mom. You've made me into a different person, a better person, and given me confidence in the choices I make. I've had to make so many of them when it comes to your health I can't afford to doubt them. Thank you for you cuddles and you laughs, they fill me with sunshine. Because, as I often sing to you while you're in pain and suffering, you are my sunshine. You'll always be my sunshine. 

Mommy loves you, and I always will. We'll take you however you are as long as we get to have you.

Love,

Mommy