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.