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. 

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

Things We've Learned: hospital stay for pull through edition

This post is for all of you either looking to know more about Hirschsprung's Disease, of those of you with kids and babies who have it that have a Pull Through Surgery in your future.

While learning how many people struggle with disease, and how common it is, I'm surprised how little information, books, and stories of people out there with it there are. I try to find out everything I can on it, like you do when you have a sick baby. Even when I type Hirschsprung's on here it tells me it isn't a word. Honestly, the most help I've gotten is on the Baby Center forum they have for it.

Before I had Micah, I had never hard of Hirschsprung's Disease. When I had it, and we were transferred to Primary Children's Medical Center, I had never seen the word before looking at the admit papers. It's terrifying to look at a piece of paper with a diagnosis on it and have absolutely no idea what it means. You don't know what questions to ask, or how to help your baby. And that's a lot of why I made this blog. Things like this is what helped me most, even more than doctors and nurses. They'll give you the cold analysis, things like this will give you tips the doctors never even thought of. Because, in the end, it's the parents that are sent home with these babies, and the parents who learn how to work with them.

So here we go, here's what's helped us during our Pull Through Operation hospital stay.

1. Hot Packs

Your baby is admitted, and when you walk into the hospital with them, they are no longer allowed to drink formula or eat baby food. You will likely be allowed clear fluids, depending on your child's surgeon, up until six hours before. After his surgery it will be days until you child eats again. My son had his operation on the 8th, it is now the 13th and they still have no idea when he'll be able to eat. Hot packs have been saving us. Begin to swaddle your baby, do one side and then before you do the other put a hot pack over where his belly is. Don't let it touch his skin, but he'll feel the heat through the blanket. Finish swaddling him to hold it in place. This will fool him into feeling like he's eaten, and likely get them just comfortable enough to fall asleep or calm down. It's worked wonders for Micah, and even though it's a very temporary fix it helps. We have them keep us stocked with the hot packs, and I don't know how we'd get through without them. We have to do this multiple times a day, but it almost always calms him down. Remember that some of the crying your baby might be doing could be from hunger, not always pain.

2. Try Not To Give Morphine, As Much As Possible

It's tempting to want to take away your baby's pain as soon as they start feeling it. Nobody wants their baby to scream in pain and be miserable. Morphine will slow down your child's GI system from waking up, and it builds up in their little bodies and slows their breathing down drastically. Given too much, and no it isn't uncommon, your child will code. They will stop breathing. It almost happened to my son, and it's shocking to hear from as many parents as I have that it's happened to their child. Your baby will not only keep breathing, but will be able to pass stool much quicker and eat quicker when you don't give morphine all of the time. In my experience the 2nd and 3rd day are the worst after surgery, then it starts to get better rather quickly. Hold your baby in the ways they like, distract them, sing to them. It helps them heal quicker and feel more loved than morphine will.

3. Keep Up On The Tylenol

Micah is being given Tylenol, and from what I've heard it's pretty common for them to receive. Where you want to get off of the morphine as quickly as possible, you're going to want to stay on top of the Tylenol. It will help them through the pain, and it wont relax them enough to stop breathing. The nurses wont always stay on top of it like they should, they'll ask you if you 'really want it right now' because 'after all, your baby isn't crying at the moment'. But here's the thing, your baby will start crying and the longer you go between the doses the harder it is to get back under control. It seems like an obvious thing, but I guess it isn't to all of the nurses. Whenever we get a new nurse I've started informing them, politely of course, that we want to keep up with the Tylenol and give it right when he's due for it. Some of the nurses act like it's obvious, others give blank stares and then agree to it.

4. Have The Hospital Bring In Mobiles And Toys

Keeping Micah playing and distracted has helped. He gets bored just laying in the crib all day and night, and he doesn't want or need to sleep 24 hours a day. He personally can't leave his room because of infections he's had, but there are things that we can bring to him. The hospital has their own toys that they have brought to the room such as a toy arch, or whatever they're really called, and a musical mobile. I can't say he laughs and plays as energetically as he does at home, and he isn't always in the mood to play at all, but it helps him keep moving and sometimes he does get into and has fun. It keeps his mind stimulated and helps him not get clots because he's moving so much. From home we brought him a couple of toys, such as his set of keys and a stuffed Eeyore that he's been liking to sleep with for about a month. I think it's helped, and at the very least it hasn't hurt.

5. Stay With Them As Much As Possible

A lot of children's hospitals have many arrangements set up for parents who want to stay with their kids. Micah's room has a couch that turns into a bed, and although it isn't comfortable it works. They also have a Ronald McDonald Family Room down the hall where you can nap on a bed, a real treat when you're here, cook meals in their kitchens, do laundry, take showers, and just relax and read or watch t.v.. They also have computers with internet in there, and the food in the kitchen has been donated and is free to families staying at the hospital. It's made our stay considerably cheaper and more comfortable. I don't like leaving Micah for long, but the cafeteria downstairs adds up and, where it's a novelty to eat their food at first, it gets old really quick. These type things are so appreciated by the families that need them, and it's so important to have them. I am extremely grateful that our hospital has this. I know that since it's down the hall, if my baby or the nurses need my they'll come get me. It's something that wouldn't happen if I were to go downstairs to eat. It also basically eliminates the need to leave the hospital. If you're like me you're not going to want to leave, and that's why they have these things.

Thank You to the people who fund these things and donate. It's made a rough time much easier.

Also, many calls are often needed to be made rather quickly. I'm much more comfortable agreeing to things if I'm there when they decide it's what they want to do and if I talk face to face with the surgeons.

ANOTHER reason you should stay: your baby needs you. They need you to be there to advocate for them. For a lot of things they aren't going to call you to ask you about, even if you ask them to. They wont call to give him morphine, for example. Some nurses don't try many things before they resort to the morphine, even though many many other things often work better than the morphine. I've found that if I'm not here to hold him and play with him and soothe him, I can't always count on the nurses to do it. I was told by a receptionist (I think that's what she is at least) that she felt so bad for Micah because he was screaming and screaming and they gave him morphine and he just continued to scream and nobody tried anything other than medications. Most days we have amazing nurses who will work with him, but sometimes we don't. I can tell you from being experienced in Micah's cries that he was probably hungry. I can tell you a hot pack probably would have soothed him, and I can also tell you that nobody tried the hot pack or holding him. I know because I asked. The one time I leave the hospital is the time we get a lazy nurse. It was bound to happen, and I wont be leaving now that I know I can shower and wash my clothes here.

6. If Baby Likes Something At Home, They'll Probably Like It Here

Something that's helped us is bringing things that he enjoys to the hospital and doing things with him that he enjoys at home. I don't know why I didn't think he'd want to be held up to my shoulder, it's the most calming thing for him when we're at home. He loves his Eeyore, he loves the smell of lavander, and he loves classical music. If your baby loves something at home, try it here. They might not be ready for everything right after surgery, but you know your baby best.

Thanks for reading! I hope that if you're another mom out there looking for information like this, that this helped a little.

My Best Friend

Yesterday, as some of you know, my husband and I celebrated our first wedding anniversary. Even though it came at an incredibly stressful time, it was just nice to be with him. I would have spent the day anywhere with him as long as we were together. Since we've been together for a year, and since I'm doing this blog, I thought I would post our story.

Urian and I met in my junior year of high school. I was dating somebody else, and quite honestly I didn't have those kinds of feelings for him. Being around him, however, made me happy and boosted my self-esteem. He was so open in his feelings for me, and even though I didn't return them this made me feel good. Who doesn't like somebody who is goofy in their love for you and compliments you freely, right? No, it wasn't fair to him. I regret not setting him straight earlier than I did every day. I regret that I didn't chase after HIM, quite frankly. I was in high school girl mode, though, and my boyfriend was a handsome, athletic football player. And even though he didn't make me happy, and he never made me feel good about myself, I felt like others envied me. 

And others did envy me, they told me that they did. I was thin, I was talented on the flute, I was talented at acting, and I could make others laugh quite easily. People knew my name, and they would tell me that they envied me having such a good relationship with my boyfriend. Because in public we were an "It" couple, even if we weren't when we weren't around people. I was depressed, and even though I only weight 120 pounds (which is actually considered underweight for my bone structure, muscles, and height), I felt fat. I didn't only FEEL fat, I was told by my boyfriend that it was going to be a condition of our relationship to lose weight. 

Now, mind you, I'm no longer struggling with the things I'm about to talk about. I am a much bigger weight, and I'm actually working to lose weight because I need to. Birth control will do that to ya, mkay? I was a healthy weight and without changing my routine or what I ate I ballooned. It sucks. Anyway, the above pictures are of me my junior year, that is why they apply. 

I was frantic to lose weight, at the time. I felt absolutely huge, and even though I ran for an hour every day I felt fat and unhealthy. I started to save up my Adderall, and when I had enough of it I took 3x the dose I was on per day. I did this because it sped up my metabolism and made me not hungry. I stopped eating, and when I had to eat because my family was watching I would throw it up. I knew I had a problem, and I knew that it was wrong. Honestly, I didn't care. I didn't care one bit about the health risks or the psychological reasons. I'd been depressed for a long time, but this is when it started becoming dangerous. And my boyfriend encouraged it. 

After a few months, and when I was getting dangerously thin, the doctor who prescribed me Adderall started to notice. My blood pressure was low, and I was unsteady on my feet. When she weighed me she was shocked at the amount of weight I had lost. I told her that I was just working on increasing how far I could go when running and that I would do better at increasing my intake. I pretended to be genuinely surprised that I had lost weight, and it worked. 

This kept up for a few months more, and I got more and more sick and more and more well... unstable. I was suicidal, I was angry, I was cutting myself every night and it STILL all seemed worth it. Urian was one of the few people who noticed (or at least talked to me about it) and this made me confide in him about how I was feeling. I grew closer and closer to him in this time, and I started to have feelings for him. Feelings I was scared of having at this vulnerable time. I ran away from those feelings, and months later when my boyfriend and I broke up, I hurt Urian by dating his friend I had no feelings for. 

I have no excuse for this behavior, and I wish I could take it back. I didn't find his friend attractive at all, his kisses revolted me, and he was creepy to be honest. After one week he started talking about our future together and other marriage. It was really weird, but every time I tried to leave he would hint that he would commit suicide. I didn't want to be the cause of his death, even if I didn't love him I didn't want him... well... dead! Eventually I broke up with him and immediately called the cops telling them he was suicidal and asking them to check up on him. 

I grew more and more unstable every day, and quite honestly I drowned in my depression. I didn't want to go on, and I was honest about it to the therapist my parents were making me see (they'd gotten worried a month earlier and made me see her). My therapist was really worried, and when I refused to sign a safety contract, she told my dad it was time to take me to the hospital. She said it couldn't wait until the next day, and the next thing I knew I was in the emergency room. From the emergency room I spent over a year in a residential treatment center receiving therapy most weekdays. From this I grew more confident and learned how to deal with my depression and how to care about my health more than my weight. I was 112 pounds when I was admitted. 

I share this information in hopes that it makes parts of Urian's and mine relationship clearer, and because it really is a big part of the story. 

Over a year, maybe closer to two, after all of this happened Urian and I started talking again. Soon we were meeting up for coffee. One thing led to another, and a tickle fight led to a kiss. It was the most real, most romantic kiss I'd ever had. It was spontaneous and there was no over thinking. There was no planning to make it less special, and everything about it felt right. That moment changed us forever. We were dating in no time, and our relationship was easy and fun. 

Urian is nerdy, brilliant, funny, and very very awkward. He's not at all the person I envisioned myself marrying, but he is so much more. He proves his love for me every day, and it's the small romantic things that mean the most to me. 

After almost six months of dating, Urian proposed to me. He proposed to me in the same place we realized we needed to be together, the park where we brought our coffee and kissed for the first time. He had even asked permission from my dad to marry me. The diamond was small, but there was so many artistic details about it that made it unique and perfect. I started planning the wedding immediately for the next summer. 

He came with me to pick out my dress, and to make sure I got the one I wanted he paid for it. He bought me a beautiful necklace to go with it, and a veil. We spent every moment that we could together, and he continued to help me though things I wouldn't have gotten through without him. I learned to completely let go of everything to do with my eating disorder by leaning on him. 

Our wedding day came sooner than I thought it would. My weight had gone up because of birth control, we had it in my parent's backyard because of money (and to make my mom more comfortable. Because of her illness she doesn't have a lot of energy.), and I didn't look the way I had wanted to. I didn't care about any of those, though. Everything looked perfect to me just the way it was, because day was to join me to my best friend. It was about the commitment, and finally I didn't feel as scared and superficial. And it took an incredible amount of trust for me to walk to that alter. 

Urian was more handsome than I had ever seen him. None of the details that had gone into planning all of it mattered the moment I saw him. I didn't see the suit or the color I chose for flowers. I saw my best friend waiting for me, waiting to commit his life to me. Our wedding was the happiest day of my life up to that point. 

Everything that followed that day only added to the happiness. We found out we were pregnant, we enjoyed our time planning and enjoying the pregnancy. We found out that we would soon have a son, and we picked out names for him. We welcomed him into the world and we knew joy. 

There will never be a year quite like this one. This year has been wonderful and hard. It's been full of joy and full of trials. I've had my husband with me every step of the way, and he's taught me trust and happiness. 

There will be many more years, but this one will always stick out for what it is. A year of firsts, and a year of togetherness. 

Heres some pictures showing special moments shared between the two of us:

Recovery

Well, he isn't feeling good, but I've seen him feel worse. They're giving him Tylenol every 6 hours and Morphine every 3 hours as needed for pain. He's on Flagyl and Cefoxitin every 8 hours as a precaution for infection, and they made him special 'water wipes' for when they have to wipe his bum. The day after surgery he slept most of the day, but today he's starting to wake up. The only problem is that it hurts him to hold him or sit up, and he isn't quite awake enough to enjoy the toy arch we have in the room for him. The toy arch is like a play mat, but without the mat. The hospital brought that in for him, and they also put a musical mobile up for him in his crib. Even with all of that, and me standing next to the crib talking to him. I have tried to hold him since his surgery, but it only added to his pain no matter where I placed my hands and made him more upset. 

Morphine is a tricky thing, especially on babies. It builds up in your system and slows your breathing more so with each dose. Because of that, they're having to wean him off of it slowly. It's difficult to balance his pain and his breathing, so he's going closer to six and nine hours between doses now. They wont withhold it from him if he's in pain, but because we don't want him to code and need a tube and cpr we choaveose to wean him. 

We haven't really left the hospital, except for Urian when he needs to work, but we sleep and eat here and I spend the day here with him. I can't imagine leaving his side for very long, and it makes me anxious to be away. The sleeping here really isn't made for two people, but from what we've seen there's a lot of parents both sleeping here at night. It's a thin twin sized mattress on a hard couch with one pillow and a blanket I brought from home in anticipation of the not so comfortable bed. But it isn't their job to make the parent's comfortable, as long as they're caring for my child with the best care possible I'm happy. 

We haven't really allowed visitors until today, and even now we limit it and there are a few guidelines. Theres no holding, no touching (it's been making him anxious and upset when there's a lot of touching), whispering only, and short visits. It's really whats best for him right now, but we understand that people want to see him and give their love. So far my sister and dad have been here to see him, and it ends up that he's asleep and they sit there looking at him. 

I'm sorry theres not a lot of time to write in more detail and with more feeling, but at the moment I just want to get it out there the way it's happening so I don't forget and so others who have this coming up in their near future can read it and know what to kind of expect. I read as many stories as I could find, and there aren't a lot that I COULD find, and it's something that actually helped me. 

Surgery

We brought Micah to Primary Children's Hospital on Wednesday so they could begin to clean out his colon for surgery the next day. The process was terrible for him, and I hope we never have to do it again. The hardest part really is him not being able to eat for six hours. Micah is the kind of baby that likes to eat every single hour, and we've had so many problems with getting him to eat and put on weight that we let him. We do what works for him, and don't mind doing it. 

It was hard seeing him smile up at me from his crib the morning we took him in, knowing that this time we brought him to the hospital he was feeling fine and he was happy. Knowing that this was going to change that, at least in the short term. So we went in and got sent to Imaging so that they could take an ultrasound of his spine and tailbone to make sure everything is there. It was. So we were sent up to his room on the third floor to be admitted.

To clean out his colon meant that he could have juice or pedialite, and as much as he wanted, and they would give him large amounts of laxatives to clean out everything in his system. By three in the afternoon he was having water colored diarrhea, and he wasn't very happy. We were unable to walk the halls with him because he's struggled with infections, so it wasn't safe for him or the other babies. We also have to wear yellow paper robes when we're in the room. Which means sleeping in the robes, which let me tell ya, is not fun. 

They took his ostomy bag off when he got there, and wrapped a diaper around it instead. The nurse said she had never worked with an ostomy patient before, and I'm not sure that this was the best course of action at all. It leaked everywhere, and when we were changing it his stoma would squirt the water poop 18 inches away from him. I think I would have preferred emptying his bag more often, but that's just me. 

At 5 pm we found out that on Thursday he would be the last of his surgeon's patients with his surgery starting at 3 pm. Keeping in mind that this was a four hour surgery, we were less than thrilled. I almost choked when I heard the time, as I'd heard that they send the youngest children into surgery first at this hospital. My husband and I just had to take a deep breath and not focus on the time. When there's nothing that you can do about it, it's best to take it as it is. 

Micah had an okay night, and at 9 am he was due to stop taking things oral altogether. There was a problem with this, however, because he no longer wanted clear fluids. He wanted his formula, dang it! As it got closer and closer to nine I began to panic, but came up with a solution that I wasn't thrilled about. I talked it over to the nurse, and we gave him the 6 ounces of apple juice through his NG tube instead of by mouth, in hopes of getting him as full as possible for as long as possible to keep him the happiest possible. 

He really didn't seem to mind not eating again until about an hour before surgery, I was really impressed with him. When that hour hit, though, it hit hard. We stayed standing with him and holding him, alternating between the two of us. It was important to us both that he feel as loved as possible before going into the surgery, and I think we accomplished that. By the time it was 3 o'clock, and time for surgery, Micah was smiling and playing with his keys. It was so good to see him happy even with this all going on.

3 O'clock came and went, but we were prepared for that. We started wondering what the hold up was when it got closer to 4 and we hadn't heard anything. Micah was starting to get unhappy again, and I really didn't want him worn out before surgery. I was told to expect surgery to be around 5:30 or 6, so I put him down to sleep a little bit before he went down. Not ten minutes after the nurse had told me what the wait time would probably be, somebody came to take him down to surgery! We were thrilled, and Micah was happy being wheeled down. He was smiling and laughing, talking to anybody who would listen.

We went down, signed all of the papers and talked to his team of nurses and surgeons. I stayed with him as long as possible, which wasn't very long, before I was booted out and he was taken by the anesthesiologist. Both my husband and I gave our son kisses and loves, assuring him of our love for him and getting him to smile one more time before he was wheeled away. It was hard watching him go, knowing that I wouldn't see him for hours when he'd be in recovery. Even harder knowing that I probably wasn't going to see him smile for a day or two.

My husband and I waited together in the waiting room for two hours before I started to get worried. They had called last time he'd had surgery to tell us that they were starting, and I hadn't received any news. I was frantic, worried the surgeons would be tired and be sloppy. I really shouldn't have been worried. Doctor Meyers has been wonderful to us, and she is very dedicated and talented at her job. I would recommend her to anybody for just about any surgery. She appears to have a very good, steady hand during surgery, and gets very 'into' it. Anyway, I called the attending nurse in surgery and they had started almost immediately after I had kissed him goodbye, and they were halfway through his surgery already, barely making the first incision. The nurse assured me that she would call again in an hour and I hung up.

We put on Star Trek to try and watch it together, hoping to distract ourselves with something enjoyable. It was no use, and I should have known that. My legs were shaking, my hands were clenching my arms. I asked people not to come sit with us, and I stand by that decision. It did make it a little easier, and even though it was impossible to forget where I was and why I was there, I was able to laugh at a few jokes on the show and cuddle with my husband. It was an incredibly private and intimate time for us, we're newly weds AND new parents. We rarely get to handle these things ourselves unless we ask people to leave us to deal with them. This is new territory for us, and as young, newly wed parents of a four month old we need a little space to breath sometimes. Not from him, but from the world itself. Things moved incredibly fast, and it helps to just be alone together during these moments to support one another and to work on loving the other person better than the day before. No offense to my parents or his parents or our friends, but during this moment I needed to know my husband's love for me and that he loved our child. To know he loved me for bringing him his child, and that even though this has been hard it's also been joyous.

The hour came and went without the nurse checking in, and I worried more and more. She called two hours after our last call, and told us only that he had lost minimal blood and his vitals were good. When asked if the surgery went well she said that Dr. Meyers would be out to talk to us about that. You can bet on the fact that I was frantic. You can be assured that after an hour an a half had passed I was about ready to claw on the operating room door. And you can also bet that when she came in and her first words were 'It didn't go good' I half jumped out of my chair, my eyes welled up, and I had to swallow bile that had come up. She had to assure me that Micah was okay before I sat all the way down again. And then, like doctors do, she proceeded to tell me why he was, in fact, not okay.

I was shaking, and my teeth were clattering, as she told me that his colon was not thriving in the way they wanted it to. They had taken out half of his colon, and half of what was left turned blue when put in the position that it needed to be. She had spent that extra hour fussing with the arteries and trying to make it work. She also spent that time wondering if she should get it over with and take out that  chunk of colon that wasn't thriving. She decided to give the colon a chance as it is, hoping that his artery was having a spasm and would relax and supply blood to the area. If not he'll get a very serious infection as the colon begins to die. She told us that it was a 50/50 chance that it would have to come out, but that she wanted to save it because, other than the artery, it was healthy colon. Losing that colon would also increase his diarrhea and constipation, and make potty training harder for him. He would struggle more throughout his life.

We thanked her, and she looked so sad that it hadn't gone the way that she had planned it to. She apologized several times before she left, giving us both hugs. We really are thankful to her, too. I want that colon to get the chance to survive, if at all possible. I want his quality of life the be the best it can possibly be, and if he loses that bit of colon then we will help him and with a little extra work he will lead as normal of a life as we can give him. There are success stories of having even less colon than he would be left with, and this makes us even more hopeful. At the same time, if there is nothing wrong with that colon and it's possible to save it, you had better believe we will do whatever possible before taking it out. We owe that to our son. We owe him an advocate to speak for him while he cannot, and we will be that for him and try to give him the best options and life we can.

Seeing him in recovery was very hard, and I don't imagine it gets a whole ton easier no matter how many surgeries your child has. That's still your baby laying there in pain, occasionally crying but not having the energy to get out all but a couple whimpers. It's hard when the nurses are saying he's in a lot of pain, and you stroking him only makes it worse. It's difficult to watch as they try to give him as much morphine as they can give without making him stop breathing. I cried silently for my baby while we were in recovery, and I cried for him when we got up to the hospital room. It's hard to not be able to comfort your child in the ways you're used to, and to know that other than talking to him quietly you can't do anything for him. 

I might be overly protective of my son, as some people have commented on, but my son is happy. My son is right on schedule developmentally. My son smiles when I come in the room. He has never been sick with things unrelated to his Hirschsprung's. Never has he had a cold or a cough, and with much work he is a healthy size and weight. I don't really give a flying *pardon the language but I'm very passionate about this* fuck as to what those people say. No he does not need to be around more people, and no he does not need to go more places. He has already had problems with Hirschsprung's related infections and he doesn't need more things going on. My son goes outside, just not around a lot of people. I don't take my son to the store or to church or to very many outings. People forget or shrug off the doctors saying to try to limit people and places for three months even for healthy babies, and Micah is only four months. I owe his health and being able to get him into and through this surgery to not exposing him to any unnecessary germs. I am his mother, and believe it or not he has done better this way. He is not unhappy or behind on learning things. I will make the choices when it comes to this because I have seen what works for him and what makes him happy. The times he has gotten infections is when we become lax and let a lot of people around him. It may be coincidence and it may not be, but nothing you will say will change it.

Sorry, that rant is over now. 

I've dedicated my life to my son ever since I found out I was pregnant, and since he's been born I have bent over backwards to protect him. Seeing him in pain and being helpless about it killed me. I hope that after this I never have to be in that position again, but I know that many things that come with a child are things that I wont be able to make disappear for him. I'll most definitely be helpless again. 

Tomorrow we go to the hospital

So it's finally here. Tomorrow we take Micah to Primary Children's Medical Center and he won't come out for eight days. This is terrifying since last time he was put into the hospital for surgery he stayed unexpectantly for a month. It will also be a joyous time for us, if all goes as planned, because our sweet baby will no longer have a stoma. There will be no more ostomy bag changes, and his skin underneath will be able to heal itself of the skin ulcers that the bag has caused. We've worked so hard and seen many doctors on how to help his skin heal while we still have the ostomy, and nothing has seemed to help. They're scary and very painful looking, and it hits me in the gut every time I see what the thing that is saving him is also doing to hurt him. The mental vision and meditation that has helped me get through this stressful time is imagining myself rubbing lotion on his tummy, healing it and making it smooth again. Holding him to me and doing skin to skin with no bag there. Imagining the health that will hopefully come from this. Knowing that statistically his risk of enterocolitis is cut in half, sparing him pain and possible death.

It's been a difficult journey for Micah, as well as for my husband and me. It's been scary and filled with emergency rooms and hospital stays. This surgery will in no way end the things that Hirschsprung's brings into our lives. For a long time we will still have to worry about infections, his diet will be very important to his life, and he may not always like or want to follow his diet. Potty training will be hard, I honestly don't know how we're going to accomplish it. But it will be the start of a more healthy Micah and the start of him being able to do more things and make life easier. 

The stress that has come with this has almost overwhelmed me at times. I've felt like I was going to drown in it sometimes, and felt completely at a loss thinking that there's no way I can do this. Feeling like I've failed at everything I try at. I've struggled my entire life with depression, and started self-harming in the sixth grade. My depression, among other things, landed me in a treatment facility after a very serious suicide attempt. At times going through this I've wondered if it would be easier to simply not live anymore, hoping for a dark nothing to surround me. Then I look into the eyes of my baby boy and know that simply isn't an option anymore. My husband, Urian, has had to hold me while I've cried at unreasonable hours of the night. I don't know how I could have made it through this without him. I've slipped back into my depression several times, and he's always reached his hand into the waters and brought me back to the surface. Between him and my son, I have the knowledge that, at least to these two people in the world, I matter and I am loved. 

I would like to apologize to everybody I've yelled at or been short with the past week. There is no excuse. To those people, I would like to thank you for making me feel safe enough to get mad at you and yell at you. It isn't excusable, but I know you won't leave me if I show my stress and anger to. Thank you to those people for not taking it personally. Thank you for comforting me and, instead of distancing yourself, getting closer to me and supporting me even more. These people hold a beautiful understanding that not many people have, and I'm lucky to know so many of them. 

I owe you everything. 

So here's to tomorrow and the beginning of the next chapter. 

The Waiting Game

I hate waiting for this surgery. I really do, I hate it. It consumes everything I do throughout the day now that it's getting closer. Every time Micah eats I wonder if he's eating enough, or if he'll lose weight before the surgery. Every time he cries I hope he doesn't cry hard enough to push his stoma out further. Every time he screams I wonder if he's in pain from teething or if there's something more going on that will make recovery harder for him. If his poop smells different I wonder if it's his C Diff coming back, and I wonder if it will turn to septic shock this time.

I wonder if I'm handing my baby over, and if when I kiss him before the surgery if I'll see him alive again. The risks are small, but they're there and they scare me. I wonder if I'm doing the right thing putting my son through this surgery, and if it would be better to just keep his colostomy at least until he's a little older. I hope thing's don't go wrong in surgery, I hope they don't find out that the Hirschsprung's goes further up than we thought, and I hope that this will be the start of a more normal life for him. But I wonder if it will.

Since I found out Micah had Hirschsprung's I have committed myself to finding a way of life that will help him in this life, ways I can make it better for him. I think any mom would do the same, and I've spoken to many that have done that. I make homemade baby food specifically designed to meet his needs, and we add an extra scoop of powder to his formula. We've changed our lifestyle and barely leave the house with him, and the few times we do leave the house to go into public with him it's to see family and we try not to let many people hold him because we fear the infections he gets.

We do so much trying to make Micah's life pain free, safe, and normal. Not all of our family agrees with everything we do and a lot of times it means them missing out on seeing him all of the time. But we do everything we do hoping to give him a good life.

I just hope that this surgery fits in with our goals in a normal happy life. And, the times when his life isn't normal, I hope it's special and wonderful. I hope this for my son, just like any mother would.

Time stands still in the NICU

Does life even really go on outside when you're stuck in the NICU? Do people still go about their normal routines? It's extremely hard to imagine.

They were going to have to do surgery on Micah to see how long a segment his Hirschsprung's was. Despite being told that it was probably going to be a long segment, I was almost delusional with hope that it was something that they could fix in surgery that day, and we would never have to deal with it again. I spent the whole ride home telling my dad and Urian exactly why it was going to be short. The reasons included that the odds were in our favor, the surgeons had said that it was uncommon for it to go long, that after being stimulated Micah had been able to pass stool. I babbled on the whole way home, and after getting into bed I continued into the late hours talking about how things were going to go our way. I needed this hope to get me through the night and to give me the strength to send my newborn son into surgery.

The next day we woke up early and went straight to the NICU. Waiting for surgery was almost unbearable. I prepared myself, and then when it took longer I would have to prepare myself all over agian. This went on for about three hours before they told us that they were ready. I kept kissing my son and telling him how much he was loved and that it would all go okay. I told myself that I was doing what was best for my son, and I still believe that this is the best option in caring for him. We met the anesthesiologist and signed lots of consent forms, reading over them carefully. We met a nurse who would be helping the surgeons, and I got to ask my last minute questions. 

Right before they wheeled him into surgery, we were told to hope for a short time. The longer the surgery took the longer the segment was. So we made our way to the waiting room to wait. My dad and Urian's mom and sister had already arrived and were waiting there. Let me just say, I love my dad. And I love my in-laws and the way that they have accepted me into their family. Their's is so different from my family, but in such a good and beautiful way. They've let me be shy and awkward and they patiently waited for me to break out of my shell without pushing it. That being said, I would have preferred both sides of the family not be there. I'm a very private person and I find it humiliating to cry in front of just about anybody but my husband. I can't sleep, cry, talk about things I'm worried about, and many other things in the presence of people other than my husband. For me, his surgery was such a private moment that I would have preferred be spent with my husband. I know that they love Micah as well, and unless it isn't what is best for Micah I want both sides of the family around him. It just made it harder for me personally, though. It's the same reason I told Urian months before Micah was born that there was to be nobody at the hospital even in the waiting room when I was giving birth. My privacy was already thrown out the window in many ways that birth requires, it was one way I could muster even a little dignity and privacy. 

So we waited all together in the waiting room, and time went by so slowly. It was taking so long, we tried to estimate how far up the colon they must be, and I was sure he would have none left when we finally got a phone call. People... never hope for news in the first phone call. They were only calling to tell us that they had just begun. So we timed it all over again, relieved that it hadn't actually taken that long and hoping for a shorter time. Except that a half hour into an hour, and then into two hours. At two and a half hours we finally got a call. The news wasn't what I was wanting to hear. Micah's Hirschsprung's effected half of his colon, and they were not going to be able to do the surgery to cut out the bad colon and reattach until months later. Micah was going to need a colostomy to give him time to grow and prepare for the next surgery. 

This news was heartbreaking to hear. I have a mom who has many health problems, and part of those means having an ileostomy. I've seen how much this has impacted her life, and how she doesn't like to go out in public because of it. It's always leaked at the worst possible times, and overall it's just been a pain. I didn't want my son to have to go through that, always wondering if he can play certain things without his bag leaking on everything. 

Since we couldn't right away see our baby, I looked up everything I could. I found everything from football players having colostomy's to artists and teachers. This was extremely reassuring, and even though I was still sad that it wasn't a short segment that they could fix the same day. They let us in to see him, and to say it was hard doesn't even give it justice. A tube was breathing for him, he was on pain meds, he had two incision sites on his stomach, and part of his colon was cut and brought to the surface and sticking out of his skin. Seeing it on my mom hadn't prepared me quite as much as I thought that it would. Seeing something like that on a baby, and my son, was difficult. 

He didn't even wake up till the next day, and as shown above they took out the ventilator (after a rough night of not knowing if they'd make their 24 hr goal of taking it out) and he was... 'awake'. He was in pain, and couldn't even suck on his soother because he just didn't have the energy. He was still on oxygen, and his sats staid at about 80, his heat rate often elevating because of the pain. They dressed him in a shirt, but lifted it over the stitches and stoma. They had yet to put a bag on his ostomy, and just kept vasaline gauze over it. He still wasn't allowed to eat. 

Over the next few days he woke more and more up, got even more upset that he wasn't allowed to eat, and we learned how to put a bag on and dress his ostomy. After a couple of days they were able to turn off his oxygen, and his TPN was replaced with an NG feeding tube. I was allowed to feed him pumped milk, but he had a lot of trouble latching onto even a bottle nipple. It was decided that we were going to clip a tied tongue that he was born with since he simply wasn't eating.

We thought that would fix the problem, and it did help a little, but my little guy had gotten too used to the NG tube doing the work for him that he refused to work for it. After he had been in the NICU for almost a month, they decided to finally take out the tube and let him do the work and feel the hunger. It worked almost immediately, he didn't lose any weight, and he was able to go home two day later. 

Yes, that's literally all. Yes I jumped from a few days to a month. But honestly that's how it happened and there isn't a lot to say. Micah just refused to eat by mouth for weeks and because of that we couldn't go home. If that's frustrating to read, imagine how frustrating it was to live it and know that he could come home, that he was healthy enough to be home, but he just wouldn't eat and there wasn't a thing you could do about it. 

I will upload a few of the pictures I took though.