Monday, June 16, 2014
Nature Scavenger Hunt
So I was stuck at home today because of a dead battery in the Jeep and me and the boys found a fun way to occupy our time. We went on a nature scavenger hunt! I found a few fun printables on Pinterest for Blayne and then I made up a cute little printable for Sawyer - one that I could stick on the top of an egg crate so he could store his treasures inside - and we went hiking. It was so much fun! And it kept them entertained for at least a half hour. Which for my boys is kind of a big deal. They even worked together which is also a bit of a rarity around here. Blayne was super cute helping Sawyer find his stuff. They even made a new friend, much to the dismay of Tolkie.
Not Good Enough
That's what I've secretly been thinking lately. That what I have isn't good enough. It sounds horrible when I write it down, or even let myself really think it but I realized yesterday that that is how I feel. Or at least that is how I am acting. Let me explain...
It's been a rough couple of months for us. In some ways, not in everything of course. Back in April I found out I was pregnant again! We were so excited. I was due on Christmas Day. I was sick as a dog which is normal for me but I was still hesitant to spread the good news until I had my first appt with a midwife which was going to be around 15 weeks. We lost our 3rd baby boy about a week before that appointment. I was 14 weeks and 6 days pregnant when I miscarried at home on July 2nd. And my world was pretty rocked. I had been through all this before you see and so I thought for sure I wouldn't have to do it again. I mean I said I knew it might happen but I didn't really think it would. Didn't think God would let it if I'm honest. But He did. We named our baby Jude Michael. And then we grieved. We told family and a few close friends. I knew from before that the hardest days were still to come, all those days that I should be pregnant and the holidays and the due date... all those were still coming and I knew that the healing and grieving would take awhile. The first time around, I figured if I healed physcially that then things would get better. But this time I knew better. I read books about grief. A Grief Observed by CS Lewis was a huge source of comfort. I so identified with him when he said, "Not that I am (I think) in much danger of ceasing to believe in God. The real danger is of coming to believe such dreadful things about Him. The conclusion I dread is not 'So there's no God after all,' but 'So this is what God's really like. Deceive yourself no longer.'" And he of course realized that God's not a bad guy in the end and I knew that I knew that too but some days I felt it. But mostly, I was sad. I didn't get too angry, I didn't get too 'why me?' I just grieved. The world just looks different when you've lost a baby. Everything is greyer somehow. It's not right. It's not just that I am not pregnant anymore, although that is a huge part because pregnant people and babies are everywhere. But it's that my future is different and wrong. It doesn't look like I want it to and I don't like it. I still don't understand it either. I have more babies in heaven than I do here and it's just not fair. Fast forward 3 months... we got pregnant again! I hadn't even wrapped my head around the idea of it or decided if I wanted it to happen or what. But it did. I had about 2 days to be excited before I realized that something was wrong. And before I would have been 6 weeks pregnant, we had lost another one. And this time, I was mad. I did ask 'why me??' I stopped talking to God. I stopped praying or reading my Bible. Over the summer my Bible was another huge source of comfort for me and this time I didn't even want to open it up.
And that's when it hit me. I am saying that what God has given me isn't good enough. Of course it's ok for me to be sad. That's not the issue. The issue is that deep in my heart I am saying my two boys here aren't good enough. My wonderful husband isn't quite enough. My family, my house... not enough. I want more. That two healthy, successful pregnancies aren't enough either, I want another one. I don't want to end on such a bad experience. That my babies would be better off here than where they are. That I know best and what I want matters more and that what I have isn't good enough. It really does sound terrible when I write it out... And then I started to think about gratefulness. About how to have it. About how to be able to look around and love every single bit of what I have and to realize that God has given me a billion reasons to be grateful. I don't want to miss a season of my boys lives because I am too busy being ungrateful. I wouldn't dream of minimizing the lives of the babies I've lost either by saying they didn't matter and I shouldn't grieve for them. But being sad and feeling entitled are two different things. And I am feeling a bit entitled to things that I was never promised.
So I wondered, how do I stop that? How do I start feeling grateful again? And then it hit me. Being grateful can be a choice. It is not just a feeling. I have said a million times that I think love is a choice and not just a feeling. Of course you feel it. Sometimes. But not always. And as I have watched marriages implode I have come to realize that love is a choice too. That you can choose to love ALL THE TIME even when you don't feel like it. And that after a while, you will feel it again. So couldn't the same be true of gratefulness? Can I choose to be grateful during this season even though I don't always feel like it? Yes. Yes I can. I can choose to focus on the precious boys that I have here. I can choose to focus on my husband, my family, my home. I can choose to spend my days thanking God instead of not speaking to Him. I can be grateful in the midst of sadness. I read this blog post today and realized this is exactly what I've been coming to realize lately. Instead of 'why me' I am starting to think 'why not me?' I wasn't promised anything different than anyone else. And if in any way what I am going through can someday help someone else - it's a good thing. And if in any way it helps me to grow - it's a good thing. And that if this can help me to be more grateful - it's definitely a good thing. Besides, who am I to question God? Who am I to say that my sweet babies are better off here than where they are? Because where they are is indescribably better than where I am. And I am much better off focusing on being grateful than I am nursing a grudge. And I am MUCH better off when I am 'speaking' again to my Abba Father who has blessed me with so much and who I have no doubt is loving on my sweet babies for me until I get there.
And let the peace that comes from Christ rule in your hearts. For as members of one body you are called to live in peace. And always be thankful. ~Colossians 3:15
It's been a rough couple of months for us. In some ways, not in everything of course. Back in April I found out I was pregnant again! We were so excited. I was due on Christmas Day. I was sick as a dog which is normal for me but I was still hesitant to spread the good news until I had my first appt with a midwife which was going to be around 15 weeks. We lost our 3rd baby boy about a week before that appointment. I was 14 weeks and 6 days pregnant when I miscarried at home on July 2nd. And my world was pretty rocked. I had been through all this before you see and so I thought for sure I wouldn't have to do it again. I mean I said I knew it might happen but I didn't really think it would. Didn't think God would let it if I'm honest. But He did. We named our baby Jude Michael. And then we grieved. We told family and a few close friends. I knew from before that the hardest days were still to come, all those days that I should be pregnant and the holidays and the due date... all those were still coming and I knew that the healing and grieving would take awhile. The first time around, I figured if I healed physcially that then things would get better. But this time I knew better. I read books about grief. A Grief Observed by CS Lewis was a huge source of comfort. I so identified with him when he said, "Not that I am (I think) in much danger of ceasing to believe in God. The real danger is of coming to believe such dreadful things about Him. The conclusion I dread is not 'So there's no God after all,' but 'So this is what God's really like. Deceive yourself no longer.'" And he of course realized that God's not a bad guy in the end and I knew that I knew that too but some days I felt it. But mostly, I was sad. I didn't get too angry, I didn't get too 'why me?' I just grieved. The world just looks different when you've lost a baby. Everything is greyer somehow. It's not right. It's not just that I am not pregnant anymore, although that is a huge part because pregnant people and babies are everywhere. But it's that my future is different and wrong. It doesn't look like I want it to and I don't like it. I still don't understand it either. I have more babies in heaven than I do here and it's just not fair. Fast forward 3 months... we got pregnant again! I hadn't even wrapped my head around the idea of it or decided if I wanted it to happen or what. But it did. I had about 2 days to be excited before I realized that something was wrong. And before I would have been 6 weeks pregnant, we had lost another one. And this time, I was mad. I did ask 'why me??' I stopped talking to God. I stopped praying or reading my Bible. Over the summer my Bible was another huge source of comfort for me and this time I didn't even want to open it up.
And that's when it hit me. I am saying that what God has given me isn't good enough. Of course it's ok for me to be sad. That's not the issue. The issue is that deep in my heart I am saying my two boys here aren't good enough. My wonderful husband isn't quite enough. My family, my house... not enough. I want more. That two healthy, successful pregnancies aren't enough either, I want another one. I don't want to end on such a bad experience. That my babies would be better off here than where they are. That I know best and what I want matters more and that what I have isn't good enough. It really does sound terrible when I write it out... And then I started to think about gratefulness. About how to have it. About how to be able to look around and love every single bit of what I have and to realize that God has given me a billion reasons to be grateful. I don't want to miss a season of my boys lives because I am too busy being ungrateful. I wouldn't dream of minimizing the lives of the babies I've lost either by saying they didn't matter and I shouldn't grieve for them. But being sad and feeling entitled are two different things. And I am feeling a bit entitled to things that I was never promised.
So I wondered, how do I stop that? How do I start feeling grateful again? And then it hit me. Being grateful can be a choice. It is not just a feeling. I have said a million times that I think love is a choice and not just a feeling. Of course you feel it. Sometimes. But not always. And as I have watched marriages implode I have come to realize that love is a choice too. That you can choose to love ALL THE TIME even when you don't feel like it. And that after a while, you will feel it again. So couldn't the same be true of gratefulness? Can I choose to be grateful during this season even though I don't always feel like it? Yes. Yes I can. I can choose to focus on the precious boys that I have here. I can choose to focus on my husband, my family, my home. I can choose to spend my days thanking God instead of not speaking to Him. I can be grateful in the midst of sadness. I read this blog post today and realized this is exactly what I've been coming to realize lately. Instead of 'why me' I am starting to think 'why not me?' I wasn't promised anything different than anyone else. And if in any way what I am going through can someday help someone else - it's a good thing. And if in any way it helps me to grow - it's a good thing. And that if this can help me to be more grateful - it's definitely a good thing. Besides, who am I to question God? Who am I to say that my sweet babies are better off here than where they are? Because where they are is indescribably better than where I am. And I am much better off focusing on being grateful than I am nursing a grudge. And I am MUCH better off when I am 'speaking' again to my Abba Father who has blessed me with so much and who I have no doubt is loving on my sweet babies for me until I get there.
And let the peace that comes from Christ rule in your hearts. For as members of one body you are called to live in peace. And always be thankful. ~Colossians 3:15
Saturday, December 8, 2012
Advent Day 8
Monday, December 3, 2012
Advent 2012
we never did anything special for advent when i was a kid so i'm a bit new to this game but we're gonna try it this year. (also, i'm not complaining, ma, just stating this as fact. you did plenty of other awesome things with us, advent just wasn't on the list. i'm not bitter. at all. for reals.) i should probably google the whole meaning and whatnot but for now, all i know is that advent means you do something special every day for the 25 days leading up to christmas. also, it means you can waste time on pinterest looking for cute advent calendars to make. check. so this is what we made (sean helped me!):
they were made out of paint samples. or paint chips. or whatever they are called. =) and this is what we're gonna do: i found this idea on pinterest (love that site) called light em up. if you're interested check it out here: http://lillightomine.com/light-em-up-2012.php. basically this woman had the idea to teach her kids about helping and serving others for christmas instead of getting them so wrapped up in themselves and 'what am i gonna get.' so she has a list of ideas you can do to get your kids involved and get them thinking of others and most importantly to remind them of Jesus and that He is what this whole christmas shindig is all about and he said to love others. so on the back of each little tree, i have listed either an activity we can do together, a fun thing to do and on some days both. i guess traditionally advent calendars had a treat or a prize or something but since no one knows any better, we are doing it this way!
day one was to send out a text with a funny picture and a sweet message to 20 people. here is the picture we sent and blayne got to tell me what to type in the message and also he picked who we sent it to. day two was to make a phone call to someone you don't get to see or talk to a lot and really talk to them. epic fail on blayne's part since he has all the telephone skills of a bump on a log but whatever. he picked uncle jordan and aunt josie to call and we all chatted for a few minutes. well, sawyer hollered but the rest of us chatted. blayne less than me. also on day two, we made a fire in the fire pit and sat outside.
day three will be hiding one dollar bills all over the dollar store with cute notes. i'm so excited.
and lastly, here's a few pics of our christmas decor. pinterest strickes again (have i mentioned that i love that website?!).
i'm kinda into using old sheet music to make stuff this year. can you tell? anyhoo, we are ready for christmas!
Tuesday, October 2, 2012
Update
Alrighty, not gonna make any promises about how I'll update this more
because I think we all know at this point that it won't happen. But
here's a little update as of the end of September 2012. Sawyer is now
almost 18 months old! Where does the time go? He's pretty much the
cutest kid ever (tied with Blayne). I think one of my favorite things
about him is his hair. It's crazy. He has these wing like things that
stick out over his ears and make him look like he's about to take
flight. And the back has these crazy, adorable, beautiful curls. I just
love them! No, he has not had a haircut yet and if those curls persist,
he may never have one. Blayne is also working on a long hair do these
days - at this point it's been over a year since his last real haircut
and his hair is about 6 inches past his shoulders in the back. Sawyer is
a walking, talking, running around, falling a lot hot mess. He started
walking around 15 months but once he started, he didn't really fall too
much or go back to crawling. It was like he waited until he knew he
could walk and then just took off. He's got a whole mouthful of teeth.
=) He is saying a few words these days like:
Hiyeeee = Hi, he says this first thing in the morning and whenever he sees you throughout the day. And he says it whenever we pick Blayne up from kindergarten.
Mooommmmy = Mommy, Whenever he is stuck or needs something or just to be cute.
Dere eee iiiii = There he is, Whenever we find Mr. Bear Bear (his version of a berber)
Uh oh, self explanatory
BaaBee = Blayne, we think. It started as BaBa and since he says it to Blayne most often we figure it's Blayne's name.
Ball, again self explanatory
BeaBea = Mr. Bear Bear
DeeDoo = Thank You
Noooo = Nose
Eyyee = Eye
Eaaah = Ear
Hiiii Dod = Hi Doggie!! He loves Tolkie and is always giving her hugs.
Meeeooow
Blayne is almost 6 - eeek! And he started kindergarten a few weeks ago. I was pretty much a wreck about it. Jordan's wedding was the weekend before school started and I kinda got wrapped up in that and forgot about school until a few weeks before. Then it was all I could think about. I just wasn't ready! He started of the year in Mrs. Cohen's class but got moved by the end of the week to Ms. McCllelland's class (with Brody). She is the high HAART teacher so we are quite proud of him! The very first day he told me he wasn't a big fan of school because a) he had to get up so early b) they make you take naps c) all he did all day was listen to rules and d) the playground is too small. But things have improved since then. He still doesn't like getting up in the morning but once he gets there he seems to like school and have fun. I think it helps that he has a few friends in his class. He is learning a lot and can even read some! He's so smart. =)
Me and Sean are doing just wonderfully, been married 7 years now (oh how time flies when you're having fun!!) and he is still working at both hospitals and I am still at home. I said that in September I was going to start the process of getting micro certification done so that I could work.... but here it is October 2nd... and nothing has been done. Maybe this month. (aaahahahahaha - maybe...)
Here are some recent pics ~
Hiyeeee = Hi, he says this first thing in the morning and whenever he sees you throughout the day. And he says it whenever we pick Blayne up from kindergarten.
Mooommmmy = Mommy, Whenever he is stuck or needs something or just to be cute.
Dere eee iiiii = There he is, Whenever we find Mr. Bear Bear (his version of a berber)
Uh oh, self explanatory
BaaBee = Blayne, we think. It started as BaBa and since he says it to Blayne most often we figure it's Blayne's name.
Ball, again self explanatory
BeaBea = Mr. Bear Bear
DeeDoo = Thank You
Noooo = Nose
Eyyee = Eye
Eaaah = Ear
Hiiii Dod = Hi Doggie!! He loves Tolkie and is always giving her hugs.
Meeeooow
Blayne is almost 6 - eeek! And he started kindergarten a few weeks ago. I was pretty much a wreck about it. Jordan's wedding was the weekend before school started and I kinda got wrapped up in that and forgot about school until a few weeks before. Then it was all I could think about. I just wasn't ready! He started of the year in Mrs. Cohen's class but got moved by the end of the week to Ms. McCllelland's class (with Brody). She is the high HAART teacher so we are quite proud of him! The very first day he told me he wasn't a big fan of school because a) he had to get up so early b) they make you take naps c) all he did all day was listen to rules and d) the playground is too small. But things have improved since then. He still doesn't like getting up in the morning but once he gets there he seems to like school and have fun. I think it helps that he has a few friends in his class. He is learning a lot and can even read some! He's so smart. =)
Me and Sean are doing just wonderfully, been married 7 years now (oh how time flies when you're having fun!!) and he is still working at both hospitals and I am still at home. I said that in September I was going to start the process of getting micro certification done so that I could work.... but here it is October 2nd... and nothing has been done. Maybe this month. (aaahahahahaha - maybe...)
Here are some recent pics ~
 |
| At Animal Kingdom on the Maharaja Trail |
 |
| Fishing on Lake Istokpoga |
 |
| Those crazy curls!! |
 |
| Playing in the mud at the ball field |
 |
| Again with the curls. I can't get enough. |
 |
| Brothers. And dog. |
All about poop OR a Hirschsprung's success story
So I decided to write this post after googling something today. My oldest son, Blayne, was born with Hirschsprung's Disease and I had a quick question about probiotics and kids with HD. But when I googled it, I only seemed to be able to find stories of kids who are having a much harder time with their condition than Blayne is. So I thought I would write this on the off chance that anyone out there ever stumbles across this blog while looking up information on Hirschsprung's to let you know that there are success stories out there! I remember looking things up when Blayne was born and diagnosed and quickly becoming overwhelmed with bad stories, with horrible complications, with sort of worse case scenarios. And I certainly don't want to minimize what things other parents and children are going through because I can only imagine how hard this would be if Blayne wasn't so lucky. And those stories are definitely a part of HD. But it's not the whole picture! So I thought I would write this as a little word of encouragement to those parents who may be starting out their journey with a child with Hirschsprung's. Just to let you know that life isn't always that bad and that things definitely don't always turn out so horrible.
Blayne was born in November of 2006. He was delivered via C-section, had a little trouble getting started with breastfeeding and also had trouble pooping right from the beginning. {Slight disclaimer - this post is going to be, as I said, all about poop. So it will be filled with words like 'poop' 'butt' 'shart' 'fart' and possibly others that I can't think of now. You've been warned.} I was told that a slight delay in passing meconium was not really a big deal or cause for concern. A nurse had to help him pass that by doing a little anal stimulation {haha, there's another one!} with a long q-tip like thing. They took an x-ray before we left to check for any blockage but nothing was seen. And then he seemed to be fine. We went home and worked on breastfeeding. I did a lot of skin to skin contact and just spent a LOT of time trying. And he seemed to get it! Looking back I see now some things that were warning signs but at the time I didn't notice them. But he would nurse for a looooong time. Like an hour and half. Just on and off, he would fall asleep and then wake up and nurse some more but he wouldn't want to be taken away. And yet, his mouth always seemed sorta dry. Even after those marathon feeding sessions. Also, he never pooped once we got him home. Around day 4 or 5 he passed a little something that looked almost like rust. But it wasn't poop. We called the dr multiple times but were told that sometimes it just happened and to keep a close eye on him. When he was a week old we went back for his first checkup. He had lost some weight and it was a concern that he hadn't pooped yet but there were no other signs that anything was wrong. Pyloric stenosis was talked about but nothing was mentioned that made us super worried. So we went home. And then that night he threw up a little and it was green. That's a big red flag btw! We called the doctor and were told that if he did it again we would need to bring him in immediately or to the ER. More green throw up the next morning. So we loaded up and headed to see our doctor in Atlanta rush hour traffic. It was not a pleasant ride. As soon as we arrived, his doctor took one look at him and told us to go immediately across the street to Scottish Rite, the children's hospital. He did look sick at that point. Pale, lethargic, skin sorta dry, he had all the symptoms of dehydration only we didn't know to look for it. We spent the next few hours in the ER. Blayne was 8 days old. The next few hours are a bit blurry in my mind but a few things happened. Tests were being run to determine the problem. Pyloric stenosis was quickly ruled out. I don't really remember what else they were testing for but I do remember I kept asking "ok so if it's not this, then what else could it be?? what's the worst case scenario here??" but no one would tell me. Probably a good idea considering I was a first time mom, with crazy hormones. In my mind, I was already thinking that he had cancer and was going to die. I was definitely hormonal and slightly crazy. Soon after arriving I was told I couldn't feed Blayne any more. Probably one of the hardest things during our week long hospital stay. Trying to comfort your hungry baby who is crying and upset and the one thing he wants is right there and I can't give it to him... heartbreaking. But... back to the ER and the first few hours. At some point we were told they needed to start an IV. Eek. They
couldn't get a vein in his arm, hand or foot. After multiple tries they asked if they could try to get an IV started in his head. What?!? But I guess it's not so crazy. There's a big vein there, kids can't reach to pull it out, it can be stabilized and held in place and as parent's we could be super careful of it while still holding and snuggling our baby. But the nurses did advise that I leave the room for that part. I did and I remember crying in the hallway as I listened to him cry. {Another side note, at this point you may be thinking the story actually sounds pretty friggin horrible and you would be right. Those first few weeks with him and HD were awful and terrifying. But trust me, things get better.} So IV in and good. Filling him with fluids. He has also started throwing up some more (brown and green) so a tube was put down his nose and into his stomach.
A specialist was introduced at this point. Dr. Theodore Brand. We can't say enough about how wonderful him and the entire staff of Scottish Rite are! He mentioned Hirschsprung's fairly early on and told us some of the signs. But they were still just testing. One thing he said he wanted to try was to stick a tube up Blayne's butt. If it was HD and there was a blockage, hopefully the tube would bypass that and allow him to poop. And boy did it ever. He put the tube and poop came flying out. It was sorta disgusting but at the same time we were happy he was getting all that grossness out of him. Did you know that a baby has 18 to 21 FEET of intestine inside?? And all of Blayne's was full of poop and backed up. That's why he was throwing up green and eventually brown. He couldn't poop it out, so the only other option his body had was to throw it back up. That's also why he was dehydrated and sickly and lethargic. He had to have a barium enema as well as a barium swallow to determine where the blockage was located. I don't really remember what that showed but it must have told the dr something because he said at that point he was fairly certain it was HD and he was going to have to do a biopsy to confirm. The day we spent at the ER was a Friday. Dr. Brand said he wasn't sure if he could do the biopsy that night so we might have to spend the weekend in the hospital and resume testing and treatment on Monday. I must have sorta freaked out or cried or Blayne looked especially pitiful or something though because he ended up staying till laaaate that night to do the biopsy. It confirmed that Blayne did, indeed, have Hirschsprung's Disease. Surgery was scheduled for the following day, on a Saturday. Blayne would be 9 days old and he was having major abdominal surgery. To say we were scared was an understatement! The first night we spent in the hospital is forever etched in mine, and my mother's, memory. The hospital was full so we got put in an outpatient recovery room. It was
roughly the size of a walk in freezer. Maybe smaller. There was enough room for a crib (which we didn't use) and a chair that folded out into a bed (haha) and we crammed one other chair in there. It was so crowded. My poor husband was in school and couldn't take much more time off and my mom was around so she said she would stay that first night with us. I slept, very little, and my mom held Blayne most of the night and neither one of them slept very much at all. It was easier for her to comfort Blayne because of the whole no feeding thing. He didn't settle down with me, at first, as well as he would with her. Probably because he wasn't so close to eating without being able to eat! We were able to give him a pacifier dipped in sugar water and that was it. Poor little guy. One of the longest nights of my life!
The next day we got moved to a bigger, inpatient room. At some point Dr. Brand explained that while Blayne had HD it was actually a best case scenario for what he had. Hirschsprung's is a condition in which a portion of intestines has no nerve endings and therefore no way to push anything past that point. Some people have the affected section higher in their intestines and some lower. Blayne's was right at the end of his intestines, right at his anus. This was
good because it offered the best chance of success with a type of surgery called pull-through. Basically, they would cut around Blayne's butt hole, pull through until they got past the affected part, cut it off and the sew him a new anus. They were able to do a laproscopic pull through which means that they used tiny cameras inserted through his belly button. The only visible scars he has are two teeny tiny ones on either side of his belly button. There are some more scars in his belly button and some inside his butt but we can't see those. Earlier on that Saturday nurses inserted a PIC line to give him more nourishment but they left the IV in since it was already there, it was secure and it was just a good back up. They took him off to surgery and he was gone for a few hours.
When they gave him back to us, he looked about the same but Dr. Brand said that things went very well and he was very happy with the results and he thought Blayne would have a great outcome. Only time would tell how much control his new butt had but as far as he could tell then, things looked good. We went home on Monday, after a few more days in the hospital and time to reintroduce feeding starting with 5 min and working our way up. Blayne never had any issues breastfeeding after that. =)
He had to go back in for some outpatient surgery the following February to stretch the scar tissue out so that he could continue to poop. Following that surgery we had to stick little sticks in his butt at home to keep the tissues from healing too tightly. We did have some problems with diaper rash but I don't think nearly to the extent that I have read about other HD patient's experiencing. We were able to keep Blayne's fairly well controlled with Bordeaux Butt Paste and as much as possible I would let him air dry and lay around with no diaper on or just a diaper pad under him. He did experience a little lactose sensitivity but that has disappeared and I really don't know if it had anything to do with HD or not. And after the surgery when he was almost 4 months old, he has been as normal a child as I could have ever thought. He did not suffer from constipation other than what normal children go through. He was potty trained by the age of 3. He has not had to have any follow up procedures or surgeries. He did have to see a surgeon once a year for the next few years but we took him last when he was 5 and the surgeon said that unless there were complications or questions we did not need to come back. The only issue that he continues to have is with 'sharting.' He will think that he has to fart and something else will come out. But this does not happen nearly enough to interfere with him being a completely normal little boy and living a completely normal life. Our doctor explained it like this: most people have a little pouch at the end of their intestines, right above the anus, where they can store poop when they have to hold it. Blayne's was removed. So when he has to go, he has to go. He can't hold it for a long time like most people can if necessary. And sometimes, there will be poop there ready to come out and when he farts a little will come out. He never poops in his pants, but just sometimes has accidents. This is really only a problem when he has an upset stomach or diarrhea. During those times, he has more accidents than normal. On a bad day I would say he will shart 4-7 times. But those days are very rare. It was worse when he was littler because he didn't want to sit on the toilet until he was all the way done. Now we just give him a 3DS and he's happy to sit on the pot for hours. =)
Last year he went to pre-k for 4 hours in the morning. I talked with his teacher at the beginning of the year and explained about HD and told her that when Blayne has to go, he needs to go. I also told her that I would keep a change of clothes and underwear in his bag just in case. My biggest concern was and is that he will have an accident at school and be embarrassed and then smell funny and get teased. Thankfully, that has never happened. I can think of a handful of times last year that he had an accident at school and he was able to clean it up and handle it himself. This year he is in kindergarten. Again, I told his teacher and he knows what to do. We explained to him that he has a special butt, that we bought it for him when he was just a tiny baby and that drs had to make it for him but it doesn't work quite as good as the ones God makes. So he will sometimes have accidents. We told him it's nothing to be embarrassed about but that he doesn't need to tell anyone, he can just say he has to go to the bathroom, grab his bag and take care of it. So far this year he has had to do that once or twice and it has been no big deal. He said no one notices and he doesn't get embarrassed and he is fine to handle things on his own.
Earlier today I was looking for information about probiotics and kids with HD and that's when I found all those stories of children and parents who didn't have as good of an outcome as we did. And trust me, I know it's nothing we did, we were just incredibly blessed and lucky. Blayne is almost 6 years old and is the most amazing gift from God. We have another son, Sawyer who is a year and a half old and he does not have HD.
So there you have it! Our Hirschsprung's success story. For those of you that know us, you know that Blayne is totally fine and that for his sake, we would rather a ton of people (especially kids) not know about this. So I'll just write about it on the internet! Haha. And for those that don't know us and may be searching for information about HD or whose kids have just been diagnosed or who maybe have been living with this for awhile, I hope that this in some way encourages you. God Bless you all!
Bianca
Blayne was born in November of 2006. He was delivered via C-section, had a little trouble getting started with breastfeeding and also had trouble pooping right from the beginning. {Slight disclaimer - this post is going to be, as I said, all about poop. So it will be filled with words like 'poop' 'butt' 'shart' 'fart' and possibly others that I can't think of now. You've been warned.} I was told that a slight delay in passing meconium was not really a big deal or cause for concern. A nurse had to help him pass that by doing a little anal stimulation {haha, there's another one!} with a long q-tip like thing. They took an x-ray before we left to check for any blockage but nothing was seen. And then he seemed to be fine. We went home and worked on breastfeeding. I did a lot of skin to skin contact and just spent a LOT of time trying. And he seemed to get it! Looking back I see now some things that were warning signs but at the time I didn't notice them. But he would nurse for a looooong time. Like an hour and half. Just on and off, he would fall asleep and then wake up and nurse some more but he wouldn't want to be taken away. And yet, his mouth always seemed sorta dry. Even after those marathon feeding sessions. Also, he never pooped once we got him home. Around day 4 or 5 he passed a little something that looked almost like rust. But it wasn't poop. We called the dr multiple times but were told that sometimes it just happened and to keep a close eye on him. When he was a week old we went back for his first checkup. He had lost some weight and it was a concern that he hadn't pooped yet but there were no other signs that anything was wrong. Pyloric stenosis was talked about but nothing was mentioned that made us super worried. So we went home. And then that night he threw up a little and it was green. That's a big red flag btw! We called the doctor and were told that if he did it again we would need to bring him in immediately or to the ER. More green throw up the next morning. So we loaded up and headed to see our doctor in Atlanta rush hour traffic. It was not a pleasant ride. As soon as we arrived, his doctor took one look at him and told us to go immediately across the street to Scottish Rite, the children's hospital. He did look sick at that point. Pale, lethargic, skin sorta dry, he had all the symptoms of dehydration only we didn't know to look for it. We spent the next few hours in the ER. Blayne was 8 days old. The next few hours are a bit blurry in my mind but a few things happened. Tests were being run to determine the problem. Pyloric stenosis was quickly ruled out. I don't really remember what else they were testing for but I do remember I kept asking "ok so if it's not this, then what else could it be?? what's the worst case scenario here??" but no one would tell me. Probably a good idea considering I was a first time mom, with crazy hormones. In my mind, I was already thinking that he had cancer and was going to die. I was definitely hormonal and slightly crazy. Soon after arriving I was told I couldn't feed Blayne any more. Probably one of the hardest things during our week long hospital stay. Trying to comfort your hungry baby who is crying and upset and the one thing he wants is right there and I can't give it to him... heartbreaking. But... back to the ER and the first few hours. At some point we were told they needed to start an IV. Eek. They
couldn't get a vein in his arm, hand or foot. After multiple tries they asked if they could try to get an IV started in his head. What?!? But I guess it's not so crazy. There's a big vein there, kids can't reach to pull it out, it can be stabilized and held in place and as parent's we could be super careful of it while still holding and snuggling our baby. But the nurses did advise that I leave the room for that part. I did and I remember crying in the hallway as I listened to him cry. {Another side note, at this point you may be thinking the story actually sounds pretty friggin horrible and you would be right. Those first few weeks with him and HD were awful and terrifying. But trust me, things get better.} So IV in and good. Filling him with fluids. He has also started throwing up some more (brown and green) so a tube was put down his nose and into his stomach.  |
| In the ER. I'm only laughing because my hubby said something
dumb as he took this pic, not because I really found anything funny that day. You can see Blayne's IV and the tube from his nose. And yes, that is poop in there, coming out of his stomach. |
A specialist was introduced at this point. Dr. Theodore Brand. We can't say enough about how wonderful him and the entire staff of Scottish Rite are! He mentioned Hirschsprung's fairly early on and told us some of the signs. But they were still just testing. One thing he said he wanted to try was to stick a tube up Blayne's butt. If it was HD and there was a blockage, hopefully the tube would bypass that and allow him to poop. And boy did it ever. He put the tube and poop came flying out. It was sorta disgusting but at the same time we were happy he was getting all that grossness out of him. Did you know that a baby has 18 to 21 FEET of intestine inside?? And all of Blayne's was full of poop and backed up. That's why he was throwing up green and eventually brown. He couldn't poop it out, so the only other option his body had was to throw it back up. That's also why he was dehydrated and sickly and lethargic. He had to have a barium enema as well as a barium swallow to determine where the blockage was located. I don't really remember what that showed but it must have told the dr something because he said at that point he was fairly certain it was HD and he was going to have to do a biopsy to confirm. The day we spent at the ER was a Friday. Dr. Brand said he wasn't sure if he could do the biopsy that night so we might have to spend the weekend in the hospital and resume testing and treatment on Monday. I must have sorta freaked out or cried or Blayne looked especially pitiful or something though because he ended up staying till laaaate that night to do the biopsy. It confirmed that Blayne did, indeed, have Hirschsprung's Disease. Surgery was scheduled for the following day, on a Saturday. Blayne would be 9 days old and he was having major abdominal surgery. To say we were scared was an understatement! The first night we spent in the hospital is forever etched in mine, and my mother's, memory. The hospital was full so we got put in an outpatient recovery room. It was
roughly the size of a walk in freezer. Maybe smaller. There was enough room for a crib (which we didn't use) and a chair that folded out into a bed (haha) and we crammed one other chair in there. It was so crowded. My poor husband was in school and couldn't take much more time off and my mom was around so she said she would stay that first night with us. I slept, very little, and my mom held Blayne most of the night and neither one of them slept very much at all. It was easier for her to comfort Blayne because of the whole no feeding thing. He didn't settle down with me, at first, as well as he would with her. Probably because he wasn't so close to eating without being able to eat! We were able to give him a pacifier dipped in sugar water and that was it. Poor little guy. One of the longest nights of my life!The next day we got moved to a bigger, inpatient room. At some point Dr. Brand explained that while Blayne had HD it was actually a best case scenario for what he had. Hirschsprung's is a condition in which a portion of intestines has no nerve endings and therefore no way to push anything past that point. Some people have the affected section higher in their intestines and some lower. Blayne's was right at the end of his intestines, right at his anus. This was
good because it offered the best chance of success with a type of surgery called pull-through. Basically, they would cut around Blayne's butt hole, pull through until they got past the affected part, cut it off and the sew him a new anus. They were able to do a laproscopic pull through which means that they used tiny cameras inserted through his belly button. The only visible scars he has are two teeny tiny ones on either side of his belly button. There are some more scars in his belly button and some inside his butt but we can't see those. Earlier on that Saturday nurses inserted a PIC line to give him more nourishment but they left the IV in since it was already there, it was secure and it was just a good back up. They took him off to surgery and he was gone for a few hours.  |
| After his surgery |
 |
| Daddy love |
Last year he went to pre-k for 4 hours in the morning. I talked with his teacher at the beginning of the year and explained about HD and told her that when Blayne has to go, he needs to go. I also told her that I would keep a change of clothes and underwear in his bag just in case. My biggest concern was and is that he will have an accident at school and be embarrassed and then smell funny and get teased. Thankfully, that has never happened. I can think of a handful of times last year that he had an accident at school and he was able to clean it up and handle it himself. This year he is in kindergarten. Again, I told his teacher and he knows what to do. We explained to him that he has a special butt, that we bought it for him when he was just a tiny baby and that drs had to make it for him but it doesn't work quite as good as the ones God makes. So he will sometimes have accidents. We told him it's nothing to be embarrassed about but that he doesn't need to tell anyone, he can just say he has to go to the bathroom, grab his bag and take care of it. So far this year he has had to do that once or twice and it has been no big deal. He said no one notices and he doesn't get embarrassed and he is fine to handle things on his own.
 |
| Today - a happy, healthy, muddy little boy |
Earlier today I was looking for information about probiotics and kids with HD and that's when I found all those stories of children and parents who didn't have as good of an outcome as we did. And trust me, I know it's nothing we did, we were just incredibly blessed and lucky. Blayne is almost 6 years old and is the most amazing gift from God. We have another son, Sawyer who is a year and a half old and he does not have HD.
So there you have it! Our Hirschsprung's success story. For those of you that know us, you know that Blayne is totally fine and that for his sake, we would rather a ton of people (especially kids) not know about this. So I'll just write about it on the internet! Haha. And for those that don't know us and may be searching for information about HD or whose kids have just been diagnosed or who maybe have been living with this for awhile, I hope that this in some way encourages you. God Bless you all!
Bianca
Wednesday, February 8, 2012
Crazy like his big brother
Apparently Sawyer is crazy. Just like his brother. That's the only conclusion I can come to after seeing him laugh when Blayne does this to him…
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