16 days

As we brought our new baby home from the hospital I was so in love with this little guy. In fact, I hated that I loved him so much because now I became a worrier. I don't like to worry. I tend to air on the side of being under cautious because I just don't want to be a mom that worries about silly things. I didn't want to be the crazy mom bringing her child to the doctor for every little thing. This would later come back to bite me in the butt. I remember when Greysen was 8 weeks old we decided it was time for him to sleep in his crib. I was terrified! A couple I had known had just lost their baby to SIDS so this was a very real fear of mine. I remember telling God, " I don't want to live in fear and I don't want to fret over my baby, I want to ENJOY him!" I remember so clearly God said to me, "He belongs to Jesus. He is yours until the Lord decides to take him and its up to God when he does. No amount of worry or over-protectedness will keep him from dying." From then on I released him to God and made it a priority to not fear over the loss of my children because it was nothing I had control over. As the weeks went on Greysen was fairly healthy. He was eating and pooping great. He was having some episodes of projectile vomiting but the doctor assured me it was probably due to my body producing too much milk which was causing him to eat too much too quickly. When Grey was 2 months old I returned to college. At 4 months old I started implementing formula and by 6 months old he was completely formula fed. This is when things started to take a turn. Everytime I took Greysen in for a well baby check-up I always marked the box that said "do you have any concerns?" I would explain that it seemed difficult for Greysen to have a bowel movement. The doctor would say it was just normal constipation and that its normal for some kids to go only once a week. I wasn't convinced but I thought "These doctors know more than me, I respect their decisions, I don't want to be a crazy mom that insists something is wrong when their isn't." We were instructed to put mineral oil in his bottles and add benefiber too. I should have bought stock in benefiber because he went thru a costco sized can each month! At about a year old we decided to switch doctors because I didn't like how the doctor dismissed my concerns so easily. Dr. Gunville was my husbands doctor as a child so I figured he was getting up there in age and was ready to retire because what else could explain a doctors reason to ignore a constant complaint??? We switched to Dr. Tapia at The Childrens Clinic where the atmosphere and care was a night and day difference! Dr. Tapia listened to our concerns and assured us that Greysen probably just had chronic constipation and to continue giving Greysen the benefiber. FYI mineral oil should NOT be given for long periods of time because it inhibits the absorbtion of minerals and nutrients. That would have been awesome to know from Dr. Gunville who had us giving it to Greysen for over 4 months! So again we went along with the doctors orders even though it seemed like nothing was helping. At about 16 months old things really took a turn again when I realized Greysen hadnt pooped in 16 days! I remember pulling into our church parking lot to meet my husband. I decided to change Greysens diaper and thats when I saw huge lumps in his stomach. I remember crying and thinking something isn't right! I immediately called the doctor and of course had to wait for the on-call doctor to call me back. After telling her the story she tells me he is probably fine and to just continue giving him fiber. He did finally go because I would do everything I could to get that waste out of him. I remember thinking "This MUST be poisioning his little body!" I just cried and felt helpless and frustrated. Once he would go it would feel like I didnt need to take him to the doctor because EVENTUALLY it would come out. It wasnt easy and sometimes took a long time, but eventually he would poop, even if that meant waiting 16 days. The doctors didnt seem concerned about him not having a bowel movement for 16 days but I did finally convince them to refer Grey to a specialist. So, reluctantly, they referred him. And again, I felt like a crazy mom asking to see a specialist when clearly, in their minds, Greysen just needed a better diet and more fiber.

Proud parent of a....pooper?

On July 4th, 2007 my due date was a week away and Kyle called into work because I was having pretend contractions...ok really I wasn't having any contractions and I felt fine but who wants to work on the 4th of July?! The plan was that kyle would go to work the next day and claim it was false labor. But the joke was on us because at 5:30 that evening, as we left to go to the fireworks, my water broke! I just think God didn't want us to be liars!

At 11:27 pm we welcomed our little guy into the world. We got settled that night and fell in love with our baby boy. The next day brought tons of visitors. I started getting the baby blues VERY badly. I didn't know what was wrong with me but it only got worse once Greysen began to gag and choke. I was confused because I didn't know newborns did that (fyi they don't). People would be holding him and he would start to gag and I would wanna cry and grab him and tell them to get the heck out of my room. I refrained. Then along with the gagging he started to actually spit up bile. Now Im not a nurse but have worked in the medical field and was also a nursing student for 2 years. It really doesn't take a genius to see that something wasn't right. I told the nurse he was spitting up bile and her response was to hand me some wash cloths and tell me that it was probably amniotic fluid. Here is where my frustration with the medical field begins. #1 that nurse could have at least pretended to care and actually look into the situation. #2 she could have consulted the doctor instead of making her own diagnosis. I have 4 kids and now know that babies don't generally spit up amniotic fluid. Should't that have been a concern too if thats what she thought it was? I was a first time mom so I had no idea. Looking back I see so many mistakes but I guess hindsight is 20/20 right?


I wanted Greysen in our room but couldnt sleep a wink. I would hear him gag and jump up frantic that he would choke and die. I would hold him and just cry as I watched him gagging.  I remember looking at his tiny body and apologizing to him for bringing him into this terrible world. At 24 hours old Greysen still had not had his first bowel movement. The night nurses were wonderful! They didn't seem concerned but offered to keep him in the nursery and put some heat packs on his belly. I still remember the nurse, her name was Bobbi. She worked so hard that night to get him to poop!

The doctor came in the next morning and spoke with us. I honestly don't remember much but I remember that he didn't know what was wrong with our son. He thought maybe his rectum was too tight to poop and thats why he hadn't had a bowel movement yet. Nothing serious. Really the whole hospital stay was a blurr to me. I was on a high from the excitement of our first baby, worried about our baby, and trying to not cry in front of people, all while dealing with the interruptions of visitors. I wish someone would have told me it was ok to cry for no reason. I wish I would have said no visitors. At one point Kyle said they were gonna do an xray to see if maybe there was a blockage. The xray came back fine. Then Kyle informed me that if Greysen didn't poop soon they were going to fly him to Denver! Thats when I realized how serious things were. I cried, and prayed, and begged God to release whatever was keeping him from pooping. I don't remember the moment but I remember someone informed me they finally got him to go! I knew Greysen would do a lot of things in his life that would bring me joy but I never thought pooping would be one of them!

After that he seemed to be fine so there was no more mention of flying to Denver or any follow-up for that matter. Even at his 4 day check-up there was no mention of his issues after birth and eventually it would be a forgotten occurence....

Advice and lessons learned:

#1 If you visit someone after having a baby, whether you are friends or family, don't stay for longer than 20 minutes
#2 If you are a nurse, you are more important than a doctor. You are the patients advocate and voice!
#3 If you are a parent, you are your childs advocate and voice. Fight for them. Fire doctors that don't.
#4 Follow your gut even if it makes you seem over protective.
#5 No matter how advanced medicine has become, things are missed.

And lastly, remember that there is only so much you can do as a parent, let God step in and do the rest!

Everything is ok but it isn't

7 Months Pregnant

In October of 2006, my husband Kyle and I found out we were expecting our first baby. At the time we lived in a one bedroom apartment, we were both in college, we had no health insurance, and Kyle was working as a children's pastor for $1000 a month. To say we were unprepared is an understatement! Luckily both of us are "take it as it comes" kind of people and we knew that God had a plan for us. We knew this baby was a gift from God.

My pregnancy was uneventful until we had our 20 week ultrasound. It was the day after Valentine's Day and we were so excited to find out we were having a boy! The ultrasound tech said to us, " do you want to know how I'm sure it's a boy?" In my head I was thinking well there either IS or ISN'T boy parts right?! He rewound the ultrasound DVD and hit play. As we were watching you could see the baby's hand go from above his head and reach down to grab his boy parts. We laughed and, I'm sure, said something like "that's our boy!" The ultrasound tech never seemed concerned and sent us out the door with a million pictures. We headed to dinner where we would announce to our families that their first grandbaby was a BOY! His name would be Greysen:)

A few weeks later at my doctors appointment the midwife gave me the results of the ultrasound. Everything looked good except the baby's stomach looked a bit enlarged. The Midwife assured me that it was possible he could have just swallowed amniotic fluid at the time of the ultrasound, making his stomach "full". It was probably nothing but I needed to have a specialist do an ultrasound to confirm that nothing major was wrong. At 28 weeks pregnant I walked into Dr. Jackson's office. He performed the ultrasound and confirmed that Greysen's stomach was not enlarged however his gallbladder was. I was concerned and asked a lot of questions but got no answers. The doctor didn't really know what would cause his gallbladder to become enlarged but he wasn't concerned and thought it would probably "resolve itself". He told me to come back at 35 weeks for a recheck and we would see how it looked then. So 7 weeks later we were back in the same office. Dr Jackson came in, spent 2 seconds looking at Greysen's gallbladder, then gave us the news that his gallbladder looked fine. He said there was no reason for concern and that Greysen would be a healthy baby boy...he would prove to be very wrong.

Hirsch-what??

Hirschsprungs disease occurs when some of the nerve cells that are normally present in the wall of the intestine do not form properly during fetal development.

During digestion, intestinal muscles move food forward in a movement called peristalsis. In order for this movement to occur, special nerve cells called ganglion cells are required. I like to think of ganglion cells as fingers. The fingers are what move food thru your intestines so eventually you can poop. Basically Greysens "fingers" are missing so the food just sits there collecting in one spot, stretching the colon, and causing severe problems.

Eventually, a bacterial infection can develop in the digestive tract (enterocolitis) causing serious problems. Severe worsening of the obstruction can lead to a hole in the bowel (perforation) and severe infection.

All children with Hirschsprung disease require surgical treatment.

Below is a picture of a normal sigmoid colon.

Below is Greysens sigmoid colon. It was stretched to 4+ times the size it should have been. It could have and probably should have burst. God was watching over him:)

My hope in writing this blog is to tell Greysens story, bring awareness, and keep our friends and family updated!

He got the short end of the stick

Short Segment

Greysen has what is called short segment hirschsprungs. There are several types depending on how long of a section your intestines are missing the "fingers" (ganglion cells). Greysen has short segment because the area missing cells was only about 4 inches long.  Aside from short segment there is also ultra short segment, total colonic...you get the idea.

1 out of 5000

Seems like a lot right? The chances of having a disease mean nothing when your child happens to the "1"... forget the other 4999.

1 out of 5000 are born with hirschsprungs and it occurs more often in first born males.

Most babies are diagnosed right after birth or within the first year of their life. Hirschsprungs is a sneaky disease because if you have short or ultra short segment it can be disguised as constipation. It can cause "just enough" problems to be an issue but not to the point where you feel the need to run to the emergency room just because your child hasnt pooped in a week. And besides, no one wants to pay for an ER visit just to be told "eat more fiber". This disease is ugly, its sneaky, and as a mom of a 6 year old with it.... its just downright exhausting.

I have sat on the bathroom floor with my son for 100's of hours trying to talk him thru pushing out his poop.

I have yelled at him because he just "isn't trying" and "he's holding it in"

I have cried many tears of frustration because my son hasnt pooped in days and it MUST be posioning his body??!

I have been frustrated at doctors that brush off my concern and tell me "It's just constipation, he will grow out of it".

I have given my son adult doses of exlax and miralax for a week straight with no results.

I have given him mineral oil, benefiber, probiotics, enemas, ridiculously expensive juices with added fiber, metamucil....you name it he's tried it.

I have called the doctor crying because my son has lumps in his tummy and hasnt pooped in 16 days...yep you heard that right. 16 flippin days!!!

I have learned a lot and I hope to share it with you. Its long and its exhausting and its about poop. But if you stick with me maybe we can learn enough to help someone else. If I can make a difference for even one mom or one child then this blog will be worth it:) Please feel free to share my blog...you never know who might need it!