Bowel Management (part 2)

⚠️ WARNING ⚠️ this post is about poop, or rather teaching a child how to do it, and keeping him clean and healthy. If you’re squeamish at all please skip this post. This post is not meant to provide medical advice in any way, shape, or form; it is merely a documentation of our experiences and meant to serve as support for other families in similar situations. If your child has severe issues with bowel movements, tummy troubles, urination, or other elimination for any reason please seek medical advice.

4 months after starting bowel management we had a follow-up appointment, at which they told us to continue daily enemas for a whole year.  This was not what I was expecting/hoping to hear.  Not going to lie, I cried about it.  The enemas were hard on Mr. J, on me, and on the rest of our family.  We had to be home by a certain time each night to do them.  We had to re-arrange events and schedules or administer the enema early.  If we didn't make special arrangements Mr. J got violently sick, which was even less fun.  we were 8-ish months in when I decided mornings would be easier because we rarely have anywhere to be in the mornings.

After about a year of the enemas Mr. J asked me when he would be done with his "washouts."  He was noticing that he was different and I wouldn't be surprised if he was also noticing the stress it was causing me as well; he's a perceptive boy.  When we had a travel mishap with his catheter I reached the end of my rope and called the colorectal clinic to ask about the next step, it took them 6 weeks to get us in.

When the appointment finally arrived we went through the usual x-rays, paperwork, and interview with the nurse.  They agreed that it was a good time to move-on in the process.  We were prescribed 2 squares of chocolate x-lax each evening and 1 tablespoon of pectin three times a day.  The next week was daily x-rays and phone calls to make sure everything was working the way it needed to.

Here's where we started to go off book.

I tried everything they suggested to get Mr. J to take the pectin.  I mixed it with water for him to drink, I mixed it with juice, I mixed it in applesauce, used a dosing syringe to give it to him straight, in yogurt, on sandwiches, and smoothies.  I asked for more suggestions from other parents and came up empty.  Mr. J said that the pectin made everything "taste slimy" no matter how much I diluted it or what I mixed it in.  To compound the problem, any time he had the pectin at night he vomited in the morning.  Add to the pectin issues his complaints of tummy aches starting 30-60 minutes after having his laxative made me sad.  I reduced his dose to 1.5 squares after consulting with the nurse, but we still struggled with the pectin.  I tried working up to the correct dosage, but Mr. J refused to eat anything he even suspected I had put pectin in.  So I gave up.  He was still taking the ex-lax, but had had lost any control he had had of his bowels.  He was back in pull-ups full-time, and going through 3 or more most days.  So I cut his ex-lax to one square per day.  This helped some, but he was still smearing through the day and getting an even bigger mess at night.

At this point we worked it out that he would go to the bathroom every morning before breakfast followed by a rinse in the shower because he's just too big for me to be wiping him.  Unfortunately this whole process was taking nearly as long as the enemas did.  Equally unfortunate were the times when he had larger accidents during the day and had to be changed like a baby.  It was during one of these that he tearfully asked me when he could wear big boy underwear again.  It broke my heart to see him so sad and feel so broken.  I was determined to find a way to get him what he wanted.

This is where we are now.  Mr. J is completely off the ex-lax and we are taking it one day at a time.  If ever he goes a day without pooping He gets a square.  More than one day and he gets an enema.  He is still struggling with control, but it isn't as bad as it was.  He is still in pull-ups full time but sometimes makes it through a day without an accident or smear.  He's not in big boy underwear yet, but we are working towards it and are closer than we were even a month ago.

Stay tuned for another update in a few months. :D

Bowel Management (part 1)

⚠️ WARNING ⚠️ this post is about poop, or rather teaching a child how to do it, and keeping him clean and healthy. If you’re squeamish at all please skip this post. This post is not meant to provide medical advice in any way, shape, or form; it is merely a documentation of our experiences and meant to serve as support for other families in similar situations. If your child has severe issues with bowel movements, tummy troubles, urination, or other elimination for any reason please seek medical advice.

The internet is a wonderfully useful thing.  When Mr. J was born and diagnosed with Hirschprung’s Disease (HD) the nurses told me that there were support groups on Facebook. You can bet that the first thing I did when we went home to sleep that night was hunt them down and join them.  The other parents were so supportive and helpful through his surgeries, ostomy, diaper rash, early potty training, and all the heartache and frustration in between.  Through this all and from our team of doctors I heard about bowel management; where we work with a team of colorectal doctors and nurses to determine how best to help Mr. J learn how to go on his own, rather than spontaneously eliminating waste as he had been doing previously.  In other words, it’s potty training boot camp with doctor support.  There are several hospitals that offer this kind of support, which is completely optional, and they each do it differently.  We are closest to Primary Children’s, so that is where we went.

Before I tell you what all we had to do let me back up a little and remind you some specifics about Mr. J.  HD can vary in severity from only effecting the rectum to effecting all of the intestines.  Mr. J has what is considered “short segment” and is missing about 1/3 of his large intestine (including rectum, sigmoid, and about half of his descending colon).  Because of this he has always had rather loose bowel movements and lacks control and some sensation of when he needs to go.  This is why we chose to get support and participate in bowel management.

We went into our first appointment not knowing quite what to expect.  To start they took and x-ray of  Mr. J’s tummy, then I filled out a long questionnaire about his bowel habits and why we were pursuing bowel management, then we met with a nurse. She told us that their usual process is to start with a daily large volume enema, take x-rays a few days in a row to determine how it’s working, and reevaluate after a few months. So that’s what we did.  We went home with our supplies a) an enteral gravity feeding bag, b) a 22 French balloon (Foley) catheter, c) an enema tip syringe, d) a 60 ml syringe, and e) a 10 ml syringe.  In addition to the items they gave us we picked up f) unscented puppy training pads (we tried to get chucks pads through insurance, but they wouldn’t cover them), g) glycerin, and (not pictured) lubricating jelly.

The procedure was this: Mr. J lay on his left side on top of a towel and puppy pad on the floor, I put the prescribed amount of saline (we mixed this ourselves with 4 cups tap water and 1.5 tsp. salt) and glycerin into the feeding bag, filled the large syringe with 35 ml of air and attached it to the balloon port, then lubed up the closed end of the catheter and inserted it.  When the catheter was in I inflated the balloon then attached the feeding bag and started the drip.  I found that if the water was cold or the drip was too fast it upset Mr. J’s tummy.  After all the solution was in I removed the feeding bag and stopped the open end of the catherter with the enema tipped syringe, then let him sit for 5-10 minutes. When the dwell time was up he got onto the toilet and sat for 45 minutes.

At first we did this at night just before bed, but over time it became easier to do in the morning, just after breakfast.  We learned that if we skipped an enema or had to do it later than usual Mr. J got a very upset tummy and usually threw up, thus we switched to mornings because those were disrupted less than evenings.


45 minutes is a really long time for a little kid to sit on the potty, so we did everything we could to make it as easy as possible on him; we got him a cuchioned potty training seat, and kept a TV tray handy for him to use while he sat. We tried having him play with toys, but he inevitably dropped them into the toilet, and after several extremely unpleasant fishing expeditions we put a stop to that and just let him have a tablet— he also got to use the tablet while we administered the enema as it helped him to hold still.  All in all he took this whole process pretty well. He was so patient and such a good sport through it all

I also found that using something to help settle Mr. J's tummy was helpful as the glycerin was an irritant and occasionally caused tummy upset even after he sat on the potty.  I added one drop of a digestive blend of essential oils to the saline and found that he didn't get as bloated by the end of the day, had an improved appetite, and fewer days with post-enema tummy upset when I did this.  As you can imagine this also made quite the stink, so I used a home-made, natural air freshener during and after each session to keep the smell to a minimum.  The nature of the enemas also made quite the mess in our toilets.  I found that using an in-bowl toilet cleaner (like scrubbing bubbles gel clings) and frequent cleanings helped make the mess a little easier to manage.  Mr. J even learned how to clean the toilet so he could help with this!

We wound up doing these large-volume enemas for a little over a year.  Stay tuned for what came next!

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Housekeeping

So it has been a while... again.  Let's just say that I have been distracted, in a good way.

We have had many big blessings come our way in the last few months.

Lawrence was working in a retail management job that wasn't treating him very well.  He was promised that he'd only have to work one Sunday a month and it wound up being nearly every Sunday, every month.  He was also working 60+ hours every week and not getting paid any kind of overtime because he was salaried.  We missed him at home and he missed us.  He was also uncomfortable with some of his working conditions, so he started looking around and found something that suits him much better.  The new company he is with is closed on Sundays, so he is home and gets to go to church with us every week. He is also only working 40-45 hours each week and they treat the employees much better.  He started this new job just a few days before Ethne's birthday.  He is much happier with his work, and we are much happier to have him around more.

J's HD remains under control and he is very healthy.  We have adjusted our diet to include more high fiber foods, to help keep J's tummy happy, such as whole wheat and it has helped all of us be a little healthier.  We were a little concerned about his lack of verbal communication for a while, but his vocabulary has recently taken off and he loves yelling at everyone to stop doing things he doesn't like.  Mr. E has also ben very healthy this winter and we feel very lucky that none of us has been hit with any of the really bad illnesses that go around this time of year.






We've been lucky to have some fun visits with Lawrence's parents in the last few months.  In October we went up to Idaho to be with Eliza when she went through the temple for her mission and also for a cousin's wedding.  Then, just two weeks later Marilyn and Larry were back in Utah to take Eliza to the MTC.  Just before Christmas we spent Lawrence's birthday with them.  We had a great dinner at Texas Roadhouse then birthday presents for him and Baby J, and quick Christmas gifts as well.  Then they flew out to visit Heidi's family in Maryland for Christmas and we saw them when they came back.  Each time they were in town we met for breakfast at a local restaurant and now Mr. E asks to go get pancakes with "Grandma and Grandpa with the kitties" on a weekly basis.  It has been wonderful to see them and spend so much time with them in the last several months.

Last, but certainly not least, on Sept. 21 we found out that there will be a new minion joining our family sometime about June 2.  For several weeks Mr. E was convinced that there was not just one, but two babies in mommy's tummy, but an ultrasound quickly put that to bed and showed only one tiny baby kicking around in there.  On Jan. 12 I was able to have another ultrasound and we found out the gender of the baby.  We are all very excited, especially Mr. E, that this new baby is a GIRL!  I feel her moving quite a bit now and Mr. E loves to kiss and hug my belly and talk to his new sister (J is pretty clueless) and he loves to tell anyone who asks all about her.

We have been feeling very blessed to be busy and happy.

The First Few Days

A little over a year after Baby J's birth I have been reflecting.  I feel like I should share some of the experiences we had in the hospital after his birth and while he was in the NICU for the benefit of others.  Before I share, though, I want to make it clear that I appreciate every doctor and nurse that cared for us during this time.  Despite my frustrations (that will become evident hereafter), they were doing their jobs to the best of their abilities and trying not to make us worry too much.  Doctors and nurses have very difficult jobs and I truly appreciate them for all they do.  I feel I should also warm those who might be squeamish, there's some details about procedures that Baby J endured that might make you squirm.

about 36 hours old

Day 1, Dec. 26:  My water broke in the wee hours of the morning the day after Christmas.  When we arrived they got me right in and hooked up to iv and monitors quickly, when I was ready for my epidural they got the anesthesiologist came as quickly as he could.  He struggled getting the needle into the epidural space because he had me sitting up and my belly was just too big for me to bend enough to make the space big enough, but as soon as I laid down he got it right in.  The nurses were courteous and the delivering doctor was understanding of my special circumstances (not being allowed to push hard or for too long because of my carotid artery).  It was wonderful and very special to be able to hold Baby J immediately after he was born and they let me hold him for what seemed like a long time before they took him to clean and measure him, the even did his first APGAR test while I held him.  After he was cleaned and I was feeling like sitting up Baby J was very eager to eat and latched on right away.  They let him eat to his heart's content before they moved us to the mother baby room.

Day 2: I was anxious to get home, I don't like hospitals and just wanted to have my whole family together.  I figured that since his birth was so uneventful that we would be released in the afternoon/evening.  This was not to be when his pediatrician came to visit and learned that he had not pooped.  She told me that this was one of the requirements for babies to go home, and as disappointed as I was at the time, I now completely understand why.  This is about when problems started popping up.  Baby J had been nursing for short bursts about every 3 hours since his birth, but that suddenly stopped after 24-hours.  He wasn't really waking up to eat and when I tried to get him to nurse he just wasn't interested.  Baby J was gagging occasionally and soon he started spitting up yellow.  The nurses kept telling me that it was all fine as long as it didn't turn green and stayed in small amounts.  This is also when they started taking him to try and stimulate him and get him to go.  As the day progressed he continued to refuse to eat so we tried some other techniques, a nipple shield, pumping and then giving him the bottle, and S and N (nursing with a small tube attached to supplement with formula), and the lactation consultant came for a visit.  Then his spitting up increased and he still wouldn't eat.  The spit up turned green and had flecks of brown in it occasionally, I was very concerned by this point.  Every time he spit I called the nurses who came in and kept telling me (as if I was a first time mom and just didn't know) that spit up was completely normal and that the color was fine.  I kept insisting it was't and they kept trying to downplay my concerns, it was really frustrating.  I finally stopped calling them, they weren't listening to me and they were treating me like I didn't know what I was talking about.  Lawrence and my dad blessed him, I felt a little better.

anderson in his mouth to prevent spit-up iv in hand

Day 3:  They finally decided to do something.  The on-call pediatrician ordered an x-ray of his tummy to try and see what might be causing the problem.  The x-ray showed gas trapped in his bowels and that his colon was narrowed on the left side.  This is when they decided to send him to Primary's and the NICU.  Lawrence was out having a special breakfast with Mr. E.  They rushed back when I called with the news.  They told me that he would have to be transported either in a helicopter or ambulance.  That's when I lost it.  I basically begged the doctor not to send him in a helicopter, my mom was there, she explained why.  He went in an ambulance.  By the time the ambulance and the transport team arrived Baby J was rather dehydrated.  They had a difficult time getting an iv in him, it was really hard to watch them continuously poke my baby boy.  When we got to Primary's they gave us a very quick orientation, showed us how the NICU worked, where the pumping room was and where and how to store milk, then took Baby J for another x-ray.  Mom made me eat, Lawrence went with J.  The second x-ray they injected barium contrast into his bum to see if it would shed light on the situation.  It shed some light, but didn't give a definitive diagnosis.

that's an iv in his head, the one in his hand went bad

Day 4-7:  Were spent waiting.  Holidays tend to slow business processes down and hospitals are no exception, labs were running slower than usual.  J had an iv and a central line that were giving him fluids and nutrition and was having lots of wet diapers.  For about 24-hours after the barium x-ray his body slowly expelled most of the barium, but nothing else.  His nurses in the NICU were very compassionate and so wonderful to us.  We went home every night to sleep in our own bed and to let Mr. E sleep at home as well, he spent most of the days at Grandma and Grandpa's house playing with his uncles.  On day 5 they finally came and performed a biopsy of Baby J's rectum to make a final determination about what was causing his problem.  The results from this took two agonizing days.  Day 7 presented the official diagnosis of Hirschprung's Disease and we were given a plan of action.

Day 8:  Surgery day!  After the biopsy result the surgery resident explained to us that his surgery would be in two parts, one where they would find the "transition zone" where the ganglion nerve cells had formed and place an ostomy then he would have another surgery later to reconnect everything.  I was too dazed to ask the questions I should have asked about why they were doing the surgery in two parts and what the heck an ostomy was.  My mom knew what he was talking about (she was there with me at the time, Lawrence had to work, or had a cold, or maybe both), but I was feeling a little lost.  I wish I had asked.  On surgery day they took my baby to a place I wasn't allowed to go and we had to wait in a room full of other anxious parents.  They couldn't tell us how long the surgery would take because of the nature of it.  The way it worked is the surgeons took cell samples every few centimeters and sent them to be tested for the ganglion cells until they found the transition zone.  The length of the surgery was dependent on how long it took for the pathologists to get the results and how much of his intestine was effected. Lawrence made me eat, the cafeteria had blueberry pancakes and bacon.

Day 9-11:  More waiting.  We did make some friends while in the NICU, other parents with sick babies from all over.  One from Cedar City, another from Vegas.  It was good to have people to talk to during the long, quiet hours holding my baby with all his tubes and wires.  On day 10 they finally let him have milk through an NG tube (nasal gastric, up his nose and down to his belly). Little bits at a time to see how it would effect him and his digestion, gradually increasing until they decided he would be allowed to nurse.  Day 11 they had me do a lot of "teachings" that were required before he could go home.  There was a video on ostomy care and a CPR video, complete with creepy CPR dummy baby that we got to take home.  The wound care nurses also paid us a visit and talked about ordering supplies to take care of his ostomy.  Again, I wish I had asked more questions about what they were ordering for us and why because we wound up with things that we never used.

Day 12:  On our way up to the hospital Baby J's nurse called to ask if I could spend the night with him so they could evaluate how well he was nursing, I also feel like they wanted to check my competency (or something).  We were already half-way there and didn't want to turn around so I could gather supplies, so at lunch time we ran out and picked up a few things I would need for what we thought would be an overnight stay.  The wound care nurses came by again to give us a chance to change his ostomy bag and let us know where the supplies would be coming from, get insurance information, and our mailing address.  The first time changing his bag was nerve wracking, it's difficult to see part of your baby's insides on the outside and you want to be so gentle with them when all the nurse is telling you to do goes somewhat contrary to that.  J was also allowed to actually nurse by this point and he seemed anxious to do so, but was also a little lazy about it.  But he didn't like the bottle either...  Lawrence had to leave us since there wasn't room for us both in the family room and he had to work part of the next day.  I was stuck at the hospital, no car.  At some point during the night Baby J's monitors decided they didn't want to work properly and the computer started panicking and beeping every 5 minutes.  The sweet nurse fixed it, but it only lasted about 12 hours.  J's ostomy bag that I had just learned to replace also sprung a leak.  The night nurse didn't know how to apply a new bag so I got to try it by myself.  I was nervous and it took a couple tries, but I got one on, that promptly sprung a leak a few hours later...

Day 13:  What we thought was supposed to be an overnight stay was actually a 36-hour stay.  I was getting frustrated and anxious.  I didn't like being cooped up in the hospital without a car, I hadn't had a shower and didn't have clean clothes.  Lawrence brought me some clothes and a few other things for the second night.  Some time during the day the nurses got word that one of the former occupants of J's NICU room had tested positive for an antibiotic resistant bacteria and we had to take extra precautions to contain it.  This meant more hand washing and wearing a goofy gown until we were cleared.  This also made me even more anxious to go home.  Fortunately J's new bag stayed on all day.  I didn't sleep well this night because I started having flashbacks and dreams about my stay in the hospital after my car accident.

Day 14:  I was done.  Nurses and doctors had been telling me for days that he would eat better and gain weight better at home, but that he wasn't gaining enough weight yet to clear him to go home.  How contradictory!  I was on the verge of walking out with my baby whether they cleared him or not.  My mom talked some sense into me and told me to explain my frustrations to the doctors.  A lactation consultant and occupational therapist visited to make sure I was nursing properly and that J had a good latch and suck.  They both noted that everything looked great, just that he was a little lazy, and made the same comments about him doing better at home.  When the doctors came by for rounds I put my foot down.  I told them that I needed to take my baby home, that I was having flashbacks, and pointed out contradictory statements.  They made me promise to take him to the pediatrician to be weighed the next day (Friday) and the following Monday for weigh-ins and set up a home health nurse to check in on us too.  Then there was a car seat check to be sure he would breathe fine in the car seat and that the straps were adjusted properly.  We had to wait for Lawrence to get off work at 5, and we were free!

We were so happy to finally have our whole family together under the same roof.  We stopped to pick up Mr. E and my parents also supplied us with dinner.  Baby J was two weeks old and finally home!

Rainbow Baby

A rainbow baby, as defined by Urban Dictionary is a baby born after miscarriage or stillbirth, but most angel mommies define this as any baby born following a loss.  It is a reference to rainbows that form after a storm that bear the promise of brighter days ahead.

Baby J is our rainbow baby.

And what a rainbow he has been.




Sometimes there's a storm and then there's some calm when the sun shines and everything seems good, a rainbow even forms, but then the storm rears its ugly head again.  Baby J's arrival was much like that.

During my pregnancy I struggled both physically and emotionally.  My body was still in recovery mode and I hadn't gotten into as good of shape as I should have.  I had pain in my hips, especially my left hip, that made it difficult to sleep, bend, and even walk sometimes.  But worse than the physical pain was the emotional pain.  I struggled to allow this baby into my heart.  I tried, but it was much, much more difficult than I anticipated.  I knew that this baby was meant for us, that he could help at least put a bandage on my broken heart, but it was still so hard to let him do that.  Until he was born.

I remember the first words I said to/about Ethne, I think I even remember what I said to Mr. E.  I am most certain of the first words I said to Baby J, I sang "Bushel and a Peck" to him.  And in that moment I felt Ethne in the room with us.  I knew that she had escorted her brother into the world, and that she was there to help me open myself up to him.  For that moment the constant ache that started when Ethne passed away abated and was replaced with incredible love and joy.  For that moment all three of by babies were, at least in spirit, on this earth and very present, safe, and happy.  It was far to short-lived, but for a few days it was very easy to reflect on that feeling and to allow my sweet new baby into my heart.  This was the eye of our storm and that sacred, special moment was the biggest, brightest rainbow I have ever experienced.





Then they whisked him away.  Ok, it wasn't so much of a whisking as much as a slow process in which the nurses made me feel like an over-protective, clueless, first-time-mom and the doctors made me worry excessively before they finally determined something was very wrong and that my baby needed more specialized care.  The storm had returned.  Now I was left with an aching for my baby that was sick along with the permanent ache of grief for Ethne.  He was blessed, tested, poked, and monitored more times than I can remember.  When he was finally diagnosed a small weight was lifted from my shoulders, the storm lightened a little.  But my baby still had to endure surgery and recover.  Two very long weeks after his birth my Baby J was able to come home.  The storm was over and the rainbow was cast, nearly as bright as the rainbow at his birth.

I am so very much in love with my sweet, happy, and gentle baby boy.  I am so grateful for the experiences we have had with him, the bad and the good.  He is such a special and brave boy that has blessed our family in so many ways.  He is a miracle, in more ways than one, just like a rainbow after a storm.  His smile lights up a room.  His beautiful red hair and blue eyes, just like his sister's, draw everyone he meets in.  I am so very, very thankful for my rainbow baby, not only once, but twice!

Happy birthday, sweet Baby J.  Thank you for being our rainbow!

Baby J update

I haven't updated about Baby J in a while...

When Baby J was born and when he was diagnosed with HD we were so scared.  Scared that his HD would be worse than it is, scared that he would have other problems, and scared that he would not gain weight and grow as he should.  Facing a rare disease, or really anything new is scary.

I am happy to report that we feel very blessed.  Over the last 11 months we have watched Baby J learn and grow.  He has hit his milestones within the prescribed time, though admittedly a little slower than his older siblings.  Since being released from the hospital after his surgeries he hasn't had problems gaining weight.  He is happy, he is healthy, he is a squishy chunk of baby.

We watch him grow and feel a mix of happy and sad.  We want him to stay the squishy baby he is, but we are happy that he is doing so well.  After he was diagnosed we started to look at stories from other kids with HD and found that many of them struggle with a myriad of issues including poor weight gain, lots of infections, lots of food allergies or intollerances, chronic constipation, and others.  We feel so blessed that we haven't had to deal with many of these.

Yes, there are foods we avoid or haven't even tried to feed him in an effort to steer clear of some of these issues, and we are always on alert for others-- but it really is a miracle that Baby J is doing so great.  He eats better than his brother, he sleeps well, he army crawls faster than some trained soldiers, and, of course, he poops well too.  We celebrate every blow-out diaper, we relish each chubby roll of baby fat, and work for his bright smiles and contagious giggle.  I have never met a child who loves the game Peek-a-Boo as much as he does and he hates "This Little Piggy," it makes him cry.  He has taught us patience, perseverance, and the power of prayer and priesthood blessings.  He is truly a gift to our family and we are grateful for him every day!

Surgery Prep

Before Baby J's pull through surgery I tried to prepare myself for the surgery and for life after the surgery.  I read about others' experiences, learned about the diaper rash and found some things to try to help with it, and got in touch with other HD parents.  But there are some things I wish I had checked up on and others that I'm glad I did.

In preparation for Baby J's surgery and subsequent hospital stay I packed a bag for myself, since I was the one that would be staying at the hospital with him.  I also packed a bag for Mr. E since he stayed with his grandparents most of the week.  I asked some other HD parents what they recommended I take with me.  I felt pretty well prepared for the hospital stay.  I found that the accommodations at the hospital were better than they were in the NICU.  There were shared showers for each wing of the unit, we had a shared room with a television in each half of the room, and a shared toilet and sink in the room, a pull-out chair bed, and every day a courtesy cart came up to the unit with free breakfast.  There was also a Ronald McDonald house a floor down that I was able to utilize a few times.

I wish I had called the hospital and asked about accommodations available to parents in the infant unit.  I also wish I had asked other parents what to expect during recovery from surgery.  Calling the hospital would have given me better insight as to what to pack and what they would provide for me and Baby J.  Had I asked other parents about recovery I would have been more prepared for some of the side effects of surgery I could expect, some of the stresses for me, and some of the requirements the doctors' would have for release.  I also would have been able to stock up better on supplies to combat the diaper rash immediately upon release, rather than having to take a trip to the store as soon as I got Baby J home.


In my bag for the hospital I packed:  enough clothes for the longest estimated stay, toiletries, lotion, hand sanitizer, towel, wash cloth, makeup, charger cables, my laptop, phone, pen and paper, some pre-packaged food, a few movies, pillow, blanket, slippers, my wallet, a water bottle, and my breast pump parts.

I was happy to have my own toiletries (the hospital had some, but nothing great), and my own pillow and blanket that made sleeping in the hospital chair/bed a little more comfortable.  My laptop and my own movies were really nice to have to keep me from getting stir crazy while staying in the same room for 5 days.  With the food I was able to avoid eating out too many times during our stay, avoid vending machine junk, and to also help out a few others with babies in the hospital.  I was also again able to pump breast milk for Baby J to have when he was allowed to eat, which I then donated to another mom who could use it when I probably wouldn't.

I wish that I had been aware that Baby J wouldn't get to eat until after his bowels began to function post-op.  I was quite worried about him being hungry and was frustrated that I wound up pumping longer than I had planned.  I wish that I had been warned about the potential for tummy upset once he was allowed to eat and the lovely vomit that ensued, I was scared for Baby J (there was a lot of it), and scared that the surgery hadn't really fixed things.  I also wish I had been told to stay on top of his pain meds and to not push weaning him off of them, I feel like I pushed weaning him off them too quickly in my haste to get him home and might have caused him some unnecessary pain.  I also wish that I had taken the advice of a friend who had spent much more than her fair share of time sleeping on a hospital chair/bed and taken an extra mattress pad to sleep on, I could have spared myself some sore muscles/neck/back.

I share this so I can remember in case we have a hospital stay in the future and also so that others in the same or similar situation can learn from my experience.

HD FAQ's

Most people have never heard of Hirschprung's disease and that means that they often have lots of questions.  Here's a few of the questions we get asked most often (some of this may be a bit of a repeat from other posts).

1.  What is it?
Hirschprung's disease is a condition that a person is born with that effects the function of the intestines in that the ganglion cells that move food and waste through the body failed to completely develop.  I recently learned that it can be described as a disease or a birth defect-- when it happens randomly and cannot be connected to genetics in any way it is considered a disease, when it can be linked to genetics, i.e. it is hereditary or occurs because of another defect or disability such as Down's Syndrome, it is a birth defect.  Baby J's Hirschprung's could be either (there is a small family history).

2. How much intestine was effected in Baby J?
A lot of other parents I have talked to know how many centimeters or inches of their child's intestines were removed, I don't.  I do know that he lost his rectum, all of the sigmoid colon, and about an inch of his descending colon.

3.  Will he have to have more surgeries?
The hope is that he will not need surgery again, but there is always a chance that something could happen that could make more surgery necessary.  Among the possible scenarios in which he might need surgery are severe enterocolitis, severe constipation, or a build up of scar tissue that causes a stricture.  As of right now, though, things look really good.

4.  How is he doing?
He is doing really well.  We started solids a few months ago and have learned that we have to introduce new foods slower than we did with our older kids and there are a lot of foods we need to avoid so that he doesn't get constipated or sick (rice, pears, peaches...).  He is still nursing and seems to prefer nursing to solids, though he eats those well too.  Despite our best efforts Baby J does occasionally suffer from some tummy discomforts such as gas pains and occasional constipation, but we work through these as they come.  He has been a little delayed on some physical milestones, but when you spend a total of three weeks in the hospital basically immobilized that will happen.  With a little extra work he is catching up on these milestones.  He is overall very happy and healthy and has two, very sharp, teeth.

5. What about the diaper rash?
His diaper rash is under control as long as I don't run out of my magic diaper duty supplies.

6. Is he all better now, will this effect him the rest of his life?
The answer to this one is a little complicated in that he is better in many ways, but this will probably effect him in some way for the rest of his life.  When you lose a major organ (or part of one) there are always complications.  Many times there are scars, sometimes there are dietary restrictions, risks of infections, or other complications.  Baby J faces most of these.  He has the scars on his tummy from the surgeries, he has scar tissue where things were reconnected that could build up and cause issues, he will most likely have food allergies/intolerances that will stay with him his whole life, he may never have "normal" stools, and he is always at risk for enterocolitis.  When he is older, probably about 3.5 or 4, and ready to potty train we will work with a group of doctor's to help him learn muscle control and possibly put him on some special diets to help his digestion and pooping.  There's a good chance that he will have to be on some kind of fiber supplement or laxative for his whole life to avoid issues like constipation.  For now, he is doing very well and, as long as we are careful about what he eats, he has few problems doing his duty.  Occasionally he will get backed up and we have to give him an irrigation (enema), but that is the exception, not the rule.  So the simple answer is, no, he is not all better, and yes, this will effect him the rest of his life.

I hope this can help answer any questions you, our readers, may have.  If you ever have questions about Baby J and his HD please ask.  I may not have all the answers, but I am always learning more about HD and will find the answers as best I can.

Life With a Stoma

This is going to be a slightly boring post for anyone who doesn't want to know about stoma care, so if you don't feel free to skip it, but I feel like it needs to be made.

I meant to make this post while Baby J still had his stoma.  I was going to make a whole video and it was going to be awesome.  But I'm not that good, so it didn't get done.  April came around faster than I thought it would and I didn't have hands to help me make the video (Lawrence was working crazy hours earlier this year).  So I'll make the post now and include lots of pictures.

When a person has as stoma they have to wear an ostomy pouch to collect the output from their stoma.  There are many different types of stomas and they can be just about anywhere on a person's belly.  Baby J's stoma was called a double barrel loop stoma because both the functioning stoma and the mucus fistula (the non-working part) were in the same place, attached on one side and looped together.  This was easier to take care of than some other types of stomas because the two pieces were together.  Some people have two separate stomas, the working one and a mucus fistula, that are sometimes close together and sometimes not-- occasionally these require two ostomy bags.  But I'm not here to talk about stomas etc. just to talk about Baby J's stoma and how we took care of it.

Before we left the hospital the nurses showed us how to take care of the stoma, there was also a video we had to watch.  Then the nurses placed an order for ostomy supplies with a medical supply company for us.  I wish I had asked more questions about what they were ordering and why because when our first order came it had supplies in it that I didn't know how/want to use and I was confused about how much of everything we had received.  I wish I had taken more time to talk to the nurse, asked her what she was ordering, how much, and why she was ordering the things she was.  This would have saved us some money and some confusion in the first few days home with Baby J.

The first few days (maybe even week) after we brought Baby J home from the hospital we were going through a lot of ostomy pouches, like 2 or three a day.  It seemed like nothing we did worked to keep them from leaking.  The hospital sent us home with a whole box of pouches and supplies to get us through until our order of supplies was delivered.  It turned out that the pouches we were using were too small for our chunker baby.  I went to the internet for some help and reached out to other parents of children with HD.  They were super nice and gave lots of suggestions to try.  We tried some of their suggestions and finally found a combination of tricks that worked well for us.

Here is a step by step of what we did to keep pouches on Baby J and the products we used that worked well for us:

Prep:
You may need to restrain the child:  the easiest way to do this is to have another adult to help hold down arms and legs, but you can also use a blanket or two to swaddle arms and legs.  You do this by getting a larger blanket (or two small blankets) and laying the child on them as if you are going to swaddle them with a corner on each side, then pin one arm next to the child's side, wrap blanket over it, then tuck the blanket corner under the child, do the same on the other side.
Cut a hole in the wafer that will fit around the stoma.  We were lucky in that Baby J's stoma didn't change size much so I made a template from an old wafer's paper backing that I was able to use over and over.  Then warm the wafer so the adhesive will form to the skin well-- if you are using a one piece system be careful that your heat source isn't too hot or it will melt the bag, this isn't a problem for two piece systems-- I put the one piece system in my bra or sat on it to warm it.



1.  Remove the old bag and wafer, if you use a one piece system they come off together, sometimes on a two piece system the bag and wafer will come off separately.  Unfortunately this often makes kids/babies cry because it's like pulling off a big bandage.

2.  Clean the area around the stoma with a gentle, lotion and scent free soap, water, and a lint free cloth.  We used Johnson and Johnson's baby wash.  You have to scrub a little to make sure things get really clean and be sure to rinse well and then get it thoroughly dry.  This was easiest for me to do in a bath.

3.  Spread stoma powder on the area that will be covered by the wafer/bag.  The stoma powder will collect on any remaining adhesive residue, this will appear slightly raised and the stoma powder won't easily blow away.  Rub these areas vigorously with your finger (I wore gloves for this part) to get all the residue off his skin.  This ensures a good seal between the new wafer and the skin.  Rinse with clean water and dry.

4.  Warm the skin by placing a warm pack or hand over the stoma and surrounding skin or using a blow dryer.  This makes the adhesive on the wafer mold to the skin better.

5.  Apply cavilon skin protectant to the area that will be covered by the wafer, I used the wipes, but there is also a spray available.  Do this in at least 3 layers as this will cause "crusting" and make the wafer stick well-- allow each layer time to dry before applying the next.

enjoying the warm pack

6.  Apply stoma paste around the base of the stoma like a caulk.  We used a syringe to make sure the paste went on in a thin ribbon and was easy to manage.  Also put paste around the hole on the wafer that will go around the stoma, after peeling off the paper backing.

7.  Place the wafer and/or bag over the stoma making sure there are no wrinkles in the wafer.  I used a q-tip around the stoma to press the wafer down and make sure I got a good seal.  Then warm the bag/skin and put gently pressure on the wafer to ensure a good stick.

This system kept bags on for up to three days for us.

The only other trick to keeping bags on, that we found, is emptying it often.  I emptied it at every diaper change-- more often if it filled with gas between.

My list of stoma care essentials:

Hollister one piece bag and wafer system
Stoma powder
Stoma paste
Syringe
Nitrile gloves
Johnson's baby wash
Lint free gauze
Blow dryer
Wash cloth
Water
Cavilon wipes
Q-tips
Scissors
Marker (to trace the template onto the new wafer)
Changing table
Blankets
Another adult

Anything for a Friend +

We have had a pretty incredible weekend, it started on Thursday.  It started with Lawrence miraculously getting two WHOLE days off work, in a row!  He had some gigs at a couple state fairs with a band he has been playing with for a couple years now and needed some time off work for those, as well as to just have some time off with family and to relax.  It was so wonderful to have him home, to spend time with him, to relax, to be together.  Mr. E was so happy to have his "Gru" (each week we get new cartoon character names) home to play with, snuggle with, and otherwise terrorize. I was happy to have extra hands with the boys and Lawrence was just happy to not be at work.  Thursday we went bowling with my brothers and grocery shopping as a family, that night Lawrence headed to the Weber county fair to play with his band.  I stayed home with the boys so they could nap.  Friday we did some laundry, some cleaning, and some packing before heading off to the Salt Lake county fair for another gig.  We all went this time and had fun listening to the band's music and visiting some of the booths, Baby J even got his first (microscopic) taste of a snow cone.  Then it was home to unload musical instruments and load the stroller and bags before heading off to Ogden.  We spent the night in a hotel and had a lot of fun watching Mr. E try to jump from one bed to the other and run around the room.  Then Saturday morning we made our way to Weber State campus bright and not too early for a 5k.

About the 5k:  About two months ago an angel mommy that I'm Facebook friends with posted that she wanted to participate in the Anything for a Friend Fight to the Finish 5k.  She wanted to create a team in honor of her angel and needed at least 25 people to make a team.  We joined the team.  I had been toying with the idea of doing a 5k and getting to meet this angel mommy, Ashley, in person was the icing on the cake for me.  I have been following Ashley's blog for a few years, since before we lost Ethne, and have  admired how she and her husband have handled the tragic loss of their daughter with faith and enduring.  I was looking forward to the event and to meeting and connecting with another angel mom.













The event started with an explanation about how Anything for a Friend was started, what they do, and why we were there.  Then there was a balloon release and the "run" started.  Along the route they put up posters with pictures of the people each team was there in honor of.  Many were cancer patients or survivors, some were for other loved ones, and a few were teams that just wanted to help.  We loaded the boys in the stroller and set about the 3.2 mile walk with a very large group of people, with a team of people we really didn't know.  Ashley and her family were so nice and made us feel welcome, and the kids had a lot of fun running part of the route together.  As we walked I thought about Ethne and how we are fighting to our finish so we can be with here again, I thought about Ashley's angel and her fight, I thought about Baby J and his fight with HD, and I thought about little Ethan-- who is still fighting his leukemia.  They are all heroes in my book and I am grateful that my life has been touched by each of them in one way or another.

While we walked I also thought a lot about answered prayers and blessings, as we just had some big ones fall into our laps...

Earlier this week we received a hospital bill for Baby J's NICU stay.  I won't go into specifics, but let's just say that it was big.  Our insurance for the 4 days of last year Baby J spent in the NICU wasn't very good insurance.  They payed their max allowed amount, but this policy had no out of pocket max and their portion was only drops in the bucket of 4 days worth of NICU expenses.  I was panicking.  But we did apply for some help through the hospital group that runs Primary's and were waiting on a decision, I was told it would probably be made by Friday.  So Friday I called to find out what had been determined.  The man I spoke with on the phone was very nice and told me that a decision had been made that morning.  He asked if I was ready to hear our new balance, I looked for a pen.  He waited patiently while I hunted a pen down, when I said that I couldn't find one he said "I'll just tell you, it's a really easy number to remember."  He then informed me that our entire debt had been forgiven.  I couldn't believe it.  This huge bill, that we would have been paying off for years, had been taken care of.  A huge weight lifted off my shoulders, I was so happy and relieved that I was crying.  Our prayers were heard and answered, we had been immensely blessed.  I am so grateful for such charitable hospitals that took care of my baby, and for a loving Heavenly Father that gave me faith that everything would work out.

I am feeling so thankful that we were able to have this weekend to spend time together and to reflect on so many blessings.

Diaper Duty

As I'm sure you can guess, we change a lot of diapers around our house.  We did get Mr. E *mostly* potty trained, so that has cut down on our diaper usage considerably, but Baby J still requires a change about every 2-3 hours, except at night.  That adds up to roughly 6-8 diapers a day (sometimes more).  So I thought I'd share our diaper duty essentials, in case anyone was wondering.

1.  I swore with our first two kids, that a changing table was unnecessary, the floor was a great place for changing diapers.  On the floor I didn't have to worry about them falling off anything, the floor or a blanket was relatively easy to clean if there was a mess, and it was cheaper.  When I was pregnant with Baby J I decided he should have a dresser, so I shopped some yard sales.  I found one for an awesome price, and it happened to be a changing table/dresser in one.  Boy am I glad we have it!  Changing ostomy bags on the floor would have been a serious pain and doing it on the bed/couch/crib would have been messy.  The changing table is so nice because I don't have to bend over or get down on my hands and knees to change all the diapers and everything I need is right there, nice and handy for me to grab.





2. I love huggies diapers.  I'll admit, I haven't really experimented a lot with different brands, but when you find something that works well for you why mess with it?  Plus, it's what the hospitals all used, so it has to be good, right?  I like the snug and dry and the little snugglers (I know snug and dry got a bad rap a little while back and there was a recall, but I've never had issues with them).  They have great elastic waistbands and leg bands that keep stuff in and they are super absorbent, bonus that Mr. E likes the Mickey Mouse designs on them.







3. I made my own wipes when Baby J first had his surgery, but the second roll got mold on it while I was using the first roll, plus they really weren't any cheaper than buying in bulk.  So I checked out a few different types of wipes and went with the simply right wipes from Sam's Club.  These wipes are a good size to keep your hands clean, have a texture to them that helps with scrubbing power, aloe, and no alcohol or fragrance so they don't burn.  These wipes have worked very well for me and are a good price.

4.  I mentioned, a few posts back, the combination of items that I found to help keep diaper rash at bay (I also mentioned that I didn't want to endorse certain products, but I love this stuff so much that I wasn't to shout it off the rooftops).  I tried lots of different diaper rash creams and remedies before finding this little beauty and I tell you, the package doesn't lie.  It says that it will reduce redness in 1 diaper change, and it does!  There is magic in this diaper cream.  Since finding it I have used a few other creams when I ran out of balmex and nothing has done as great a job as the balmex.  My nearest walmart has had packages with coupons on them, but you can print a coupon for it here.

 5. Last, but not least, is the magic that is stoma powder.  You have to buy this little beauty from a medical supplier, and if you want insurance to pay for it (it ranges in price from $7-$200/bottle) you need a recommendation from a doctor.  I ran out of it for a few weeks about a month after Baby J's surgery and learned what this stuff really does for him.  When I was out of stoma powder I made sure to get his bottom dry before applying the cream, but he still developed a small rash.  The stoma powder absorbs moisture and works some additional magic in a partnership with the cream.  For a yeasty rash I use nystatin powder in place of the stoma powder, it does its job, but not as well as the stoma powder.  If you can't get a dr. to sign a note for stoma powder I've heard that corn starch can be a pretty good substitute.

These are my HD diaper duty essentials.

In His time

Apparently I have to keep learning this lesson, that things I want/need happen in the Lord's time and not necessarily in my time.

After high school and upon starting college I was anxious to get married and start a family of my own.  I dated quite a bit and was even engaged at one time, but that didn't work out and I was incredibly disappointed at the time.  But had that worked out I wouldn't have met Lawrence and we wouldn't have the beautiful family we have now.  Marriage didn't work out exactly when I wanted it to, but when I needed it to, and with the person that I need(ed) in my life.  The Lord knew this even though I didn't.  I am beyond grateful for Lawrence and our temple marriage.  He is a hard working provider, a wonderful father, and my best friend.

G and I wrestling

Growing up I was happy with my one brother, but I always thought it would have been fun to have more siblings.  My parents considered adoption when I was younger, but it never felt right to them.  It was finally right when I was a junior in high school and about 18 months later our family was blessed with my brother G.  He is such a great example to my kids and a really proud uncle.  Then they did foster care and went through a handful of children who were eventually reunited with their biological families until I came into our lives.  He is a happy, busy (super, extra busy) boy who fits right in and loves my babies too.  I is also a little younger than Ethne and I'm sure my parents had always thought that their kids would be older than their grandkids, but both Ethne and I joined our family when they were meant to.

When I was pregnant with Ethne my mom found out that she had a tumor on her pituitary gland and would have to have it removed.  Travel was difficult, she was sick, and I was scared and a little helpless to do anything for her.  Ethne was born four days before her due date.  This allowed my parents to come see her and us to visit my parents for Thanksgiving, before my mom had to have her surgery.  It was such a blessing to me to be able to see my mom and for my baby to meet her Grandma.  My mom is fine now and the tumor was benign, but that was a scary time for all of us.  Ethne's birth allowed us time together and gave us something else to think about when we were all consumed with worry about my mom.

Through my entire pregnancy with Baby J I was certain he would come early.  Both my other two were early, so this boded well for me.  I was determined that he would be born before Christmas.  The last month or so I was done.  I was tired, sore, big, and beyond ready to have this baby.  It had been the most difficult of my three pregnancies with some morning sickness, soreness that I hadn't had before, and I was also battling with emotions that I hadn't experienced before.  I prayed that he would come so I could be more comfortable and have less pain.  So when contractions started coming pretty regularly on Dec. 21 I was thrilled.  But it wasn't to be.  After going to the hospital twice in 24 hours only to make very little progress and have the contractions stop, my hopes were dashed all over the floor.  Little did I know that this was a blessing in disguise.  Five days later, on the 26, my water broke and the contractions were unmistakable, Baby J made his entrance.  I was excited to spend as little time in the hospital as possible and take my late Christmas present home to his brother.  But you know how well that worked out.  Again, I was beyond disappointed that my baby was sick and wouldn't be coming home on my schedule.  It was also frustrating to sit around the hospital and wait for the holiday lag to pass so we could get tests done and find out results so we could know what was wrong with our baby.  Had Baby J been born much earlier we would be paying a lot more for his surgeries and hospital stays, also if he had been diagnosed sooner.  Our insurance last year wasn't the best, but it covered enough for the last 4 days of last year that we weren't left with too many out of pocket expenses.  Our insurance that kicked in on January 1 had a reasonable deductible and not too bad of an out of pocket max (both of which we have met).  Had Baby J been diagnosed sooner the other insurance had a higher deductible and no OOPM.  While it meant that I was uncomfortable a few days longer than I really wanted to be Baby J came just when the Lord needed him to come.  Even though there have been a lot of bumps along the way, I'm glad he came when he did and thankful that someone who can see the grand scheme of things knew when his arrival would be best for our family.

I'm sure that I will continue to be taught this lesson, and I will continue to look for the blessings that come from things happening in the Lord's time and not always in mine.

The E Word

Enterocolitis.  From the time Baby J was diagnosed with Hirschprungs Disease doctors and nurses started mentioning this word.  They said we had to be on constant watch for it because it could be deadly.  As if I wasn't worried about enough, having just had a baby and having that baby be diagnosed with a condition that I had never heard of.  Now I had to watch for an infection that could potentially kill my baby.  No one really told me what it was or what caused it, just signs and symptoms to look out for.

We were pretty lucky while Baby J had his colostomy.  We were extremely cautious too.  He didn't go to church, I didn't take him shopping (except in an emergency), and we avoided sick people at all costs.  He never got this dreaded infection.

I finally figured out what this dreaded word means.  Enterocolitis is an infection caused by a build up of bacteria in the intestines and is very common in people with HD, especially babies and young children.  See, your intestines house a lot of bacteria.  Much of this bacteria is good and helps with the digestion process, it is supposed to be there (think probiotics).  But if you get too much of the bacteria, or if bad bacteria doesn't get expelled, it makes you sick.  Enterocolitis can kill the appetite with nausea, cause swelling which can block things up, releases toxins into the blood, and often lands the person in the hospital.  It can be caused by any kind of infection such as flu, colds, ear infections, and common antibiotics (which can cause a build up of yeast in the gut).  The best way to cure it is to clean everything out, which often means other antibiotics, specifically one called Flagyl.  This particular antibiotic basically kills everything, even the good bacteria.  It is hard on the body and apparently tastes awful.  Another way to cure it is to clean things out in a different way, a rather unpleasant way, with washouts or enemas.  If caught early enough this can clean things out without using antibiotics and without a hospital stay.

Baby J has had some follow-up appointments with his surgeon to make sure everything is healing how it should.  At each appointment I have been admonished to watch out for this unpleasant infection.  At his most recent appointment I was given equipment to perform the washouts.  She instructed me that, should Baby J get so much as a cold or should have to take antibiotics for anything (including flagyl) that we would have to do washouts to prevent enterocolitis.

The weekend before this appointment Baby J had been having a small fever, diarrhea, and vomitting.  I was getting worried as these are signs of the E word.  But he was acting pretty much normally, the fever was low and didn't last long and the other tummy problems were inconsistent.  After the appointment his appetite started to diminish and he became increasingly fussy.  I prayed about how to help my baby, Lawrence blessed him that he would get better, and soon I decided to try the washouts and see if that helped.  Immediately after the first washout his appetite was back and he became his happy self again.  After a few days Baby J is feeling much better and his symptoms are quickly disappearing.  He most certainly had this nasty infection and we caught it early enough that the washouts have cleaned it out without a hospital stay or the nasty flagyl.  I am so very thankful for answers to prayers and Priesthood blessings that helped my baby get better without having to go to the hospital.  I am also grateful for doctors that have studied and know how to help with things like this.

The rash...

...and other side effects.

I think people assumed (me included, at least for a while) that the surgery would mean Baby J would be completely cured of his HD.  That he would magically be completely normal with normal bowel function, normal diet, etc.  But this is not the case.  Once an HD baby, always an HD baby.  See, even after the colostomy is closed and his bowels are reconnected to his bum he will still have issues with this.  He will likely never have completely "normal" bowel function and may not be able to eat a "normal" diet without restrictions.  Children (and even adults) with HD often struggle with issues of bowel incontinance-- be it constipation or diarrhea.  Their bowels are not "normal" so we shouldn't expect things to be.  Take away part (sometimes all) of a person's intestines and digestion just isn't going to work the same way.  There are lasting side effects

A minor side effect is his scars.  Baby J will live with several scars on his tummy.  A larger scar on his left side from where they closed his colostomy, and four smaller scars where the laproscopic camera went in.  These smaller scars may fade and become barely noticeable, but the larger scar from the colostomy will not.

Another side effect, that we were told to expect, is diaper rash.  Not your run-of-the-mill red baby bottom that can be easily fixed in a few days with some cream-- nasty, breaks the skin and makes it bleed diaper rash that just won't go away, no matter what you do.  It started a couple days after Baby J's first poo.  The nurses and I tried to stay on top of the messy diapers, but they were just happening so frequently (more on this in a minute) that it was impossible to do unless someone stood by him constantly, waiting to clean it up.  After he had been going for a day or so I got smart and asked for some diaper cream, I should have asked sooner.  Things were still pink, no skin breakdown had happened yet, so I thought we were in the clear.  The doctors told me that it wasn't necessary to wipe all the cream from his bum at every change since vigorous cleaning could also lead to skin breakdown and rash, so I tried my best to ignore my instincts and didn't wipe it all off.  But on day three after his first dirty diaper his bum started to turn red, despite my best efforts.  Now to explain...  (yes this may be a little gross)

The intestines' purpose in digestion is to suck moisture out of food and put this moisture and the nutrients it holds into the blood stream, then to move waste out of the body.  As moisture is removed from food it becomes less acidic and more solid in nature (remember this).  A normal bowel has a rectum that has a small pouch in it where waste is stored and compacted before it leaves the body.  Normal waste has a low moisture content and is fairly solid as it exits, even in babies, and is therefore non-acidic (or at least low in acid content).  Since persons with HD lose their rectum and this pouch for storing waste, along with part of their intestines that suck moisture from this waste their poo is more acidic, more runny, and happens more often than normal people and babies.  This means that, unless someone is there to change the diaper as soon as a bowel movement happens, and can essentially be there 24 hours a day to do so, skin breakdown and diaper rash are inevitable, even with this it is still likely what with constant wiping and cleaning of the area.

So I tried to prepare.  I looked up recipes for diaper rash creams and cures online along with homemade wipes recipes (many store-bought wipes have alcohol in them and this can cause pain and drying which just makes the rash worse).  I consulted with other HD parents.  I reflected on the nasty rashes Mr. E had as a baby.  I thought I had done good.  But after we came home I was smacked in the face with reality.  My baby cried every time I changed his diaper and screamed when I put the cream I had stocked up on on his bottom.  His poor little tush was getting redder and redder by the minute, and I was changing so many diapers it felt like I couldn't get anything else done all day.  So I mixed up some coconut oil, jojoba oil, and lavender essential oil (a recipe from the internet) to try as a rash cream.  It seemed to soothe the rash some and it soothed Baby J some too.  Unfortunately it didn't protect his skin from the waste as well as it should and things continued to get worse.  So then I tried layering.  I put the coconut oil stuff on then the diaper cream.  But this still made Baby J scream and the cream didn't stick well over the oil.  So I raided the rash cream aisle at the store and came home with several creams to try.  I started with a new cream immediately because I couldn't take the screams any more.  The first cream I tried didn't make him scream *hallelujah!*, but it also didn't stick well, with or without the coconut oil stuff on first.  So I tried something the doctor suggested and put stoma powder (a fine powder used to help clean around ostomies) on with and without the coconut oil.  This helped a little, but the second cream still didn't stick.  Baby J's little bottom kept getting redder.  When I ran out of cream #2 after 2 days I started with the next cream.  This one was thicker and stuck better, even over the coconut oil.  By this point I had also made my own wipes, which also seemed to help some.  So our diaper changes at this point went something like this...  Wipe, but not all the cream off his bum, just enough to clean; pat his bottom dry with a piece of tissue or gauze; coconut oil; stoma powder; cream; new diaper.  But we are still changing his diaper frequently, like every hour during the day, that's a lot of diapers and diaper cream.  I am pleased to say that I have found a quicker and highly effective routine after several different attempts.  That last cream has been miracle worker and it with the stoma powder is our best friend.  The biggest key to getting rid of diaper rash is ensuring that the diaper area is dry before applying any medicines or creams, that is where the stoma powder is so handy.  Something in that third cream helps neutralize acid and other rash causing elements, plus it is super thick so it sticks great and you don't have to use as much.  His bum still has some red spots, but it looks so much better than it did when we first came home and, so far, we have been able to avoid open and bleeding sores.  (In case you are wondering, I am not giving out brands and names of rash creams publicly since I haven't been paid to endorse them and I don't want to give others a bad name for not working for Baby J's rash.)

Longer lasting than the rash will be possible problems with constipation or diarrhea and diet issues and his risk for certain gut-related infections is higher.  Some people with HD never have food sensitivities and others have a lot.  Some overcome problems with incontinence and food sensitivities and others struggle with it their whole lives.  Some kids get these infections several times and others never get it.  Only time will tell how Baby J will handle all of this.  I also have learned that potty training can be an issue with HD kids, but Primary Children's has a bowel management program that we can participate in to help him learn how to train his muscles and deal with problems that may arise as he gets older.  I am grateful for such a great children's hospital so close and I never thought I would be grateful for poo!