9 Month Struggle

After the accident I saw a lot of doctors and out of a sense of duty I asked about future children as I was cleared for various activities.  As each doctor cleared me feelings of fear and doubt began to creep in.  Several months after the accident, after all my doctors had cleared me to go on with my normal life and normal activities, and after months of physical therapy, I finally worked up the nerve to tell my husband that I was unsure about having any more children.  At the time we had Mr. E who had survived the accident and I was already nervous enough that something might happen to him, the though of another child that could potentially cause me the heartbreak of loss again scared me so much I can't even put it into words.  Miscarriage or stillbirth were certainly on my mind, especially since some of my injuries from the accident make me high risk in pregnancy.  I couldn't bare the thought of even an early miscarriage, I knew that my emotional state wouldn't bare it.  Lawrence was disappointed to say the least.  He told me that he knew that there were more children meant for our family and he couldn't bare the thought of not providing them the opportunity to have mortal bodies.  He told me that he was willing to wait for me to feel better about having more kids, but that this was something I would have to pray about.  I prayed and received comfort.  A little over a year later I came around and got pregnant.

Shortly before we decided to get pregnant again we moved into a new house.  After moving seemed like as good a time as any, I had survived one rather big emotional hurdle, why not brave another?  I really though that I was ready.  But then I got pregnant and I found out how wrong I was.  I struggled to connect with my rainbow baby during my pregnancy.  As much as I struggled I did harbor hope that this baby would be a girl, not to replace my daughter, but to maybe help patch my grieving heart in ways that I though a boy just wouldn't do.  When we found out the baby was a boy I was a little disappointed, but still wanted to be able to love him.  I continued to struggle with connecting to this baby.  I tried decorating his nursery, taking more pictures and videos of my baby bump, washing clothes for him, choosing a special coming home outfit... none of it worked.  I couldn't even bring myself to even talk to him the way I had with my first two.  Shortly before he was born I finally broke down and told Lawrence about how I had been struggling.  It was almost harder to tell him about this than it was to tell him about possibly not having more kids.  He told me that he was worried that this would be a problem and did his best to comfort me and help me.

When Baby J was born I was afraid that I would continue to struggle to connect with him, but something amazing happened.  When the doctor handed him to me after he was born I had an overwhelming feeling that Ethne was in the room with us.  In that moment I fell completely in love with my baby boy and my fears flew out the window.

Then I was put to the test when we found out about J's Hirschprung's Disease and he had to be hospitalized and have surgeries.  This was a whole new kind of struggle to keep my heart and mind open and continue loving him when the future seemed so uncertain.

Long story short (to read the rest of his story follow the Baby J tag at the bottom of this post), he is fine now and I was able to stay by his side through everything.  I was scared out of my mind and went through some flashbacks and what I'm pretty sure was PTSD, but I can't imagine not having him, I love him so much.  He has been a huge blessing to our family and has helped me heal in all the ways I was afraid he wouldn't be able to and more.  He is patient, brave, happy, and a joy to be around and I love him so completely-- we all do.

I want it to be clear that, while I struggled a lot emotionally, I wanted Baby J.  I share these things because I want others to know that they are not alone.  Another angel mom recently shared her struggles with pregnancy following the loss of her child and it buoyed me up immensely to know that I am not alone in my struggles.  The Atonement is real and I know that Christ knows my pains, but sometimes it is immensely comforting to have a more tangible friend that can understand too, and sometimes these friends are Christ's way of helping to comfort us.

(Anti)social

Before I get into this post I want to make it clear that this is not about anyone but me, this is a problem I have struggled with since losing Ethne and none of this is a reflection on any family, friends, acquaintances, or even strangers.

In high school I was known as a bit of a flirt, I had lots of friends, and was busy with lots of extra curricular school and church activities.  When I moved on to college at SUU I got involved in music, had a fun job with a lot of people I liked, had good roommates, and dated quite a bit.  BYU-I was a little different, I still had a good job, I kept dating, but I didn't exactly have roommates my first semester there, and only had two while I was engaged.  The point is, I was fairly outgoing.   After Lawrence and I got married things changed some, but we still enjoyed having friends over for dinner and/or games.

Then the accident happened and Ethne died.

Since the accident I have struggled with social anxiety.  I struggle in large groups of family or friends.  Part of the reason I struggle is because I am afraid of running into triggers then having people wonder why I am crying for what may seem to be no reason.  Meeting new people is also a struggle because they often don't know about the accident and they didn't know Ethne, losing it around new people is even more difficult and terrifying.  Making new friends is tough because they often don't understand that new people who didn't know Ethne are harder to talk about her with.  Family events can be particularly difficult since there tends to be cousins, nieces, and siblings that can cause me to break down.  I also struggle with small talk, and tend to keep to myself at large gatherings.

I pray for strength, I put on a brave face, and I try to get out there, despite the struggle.  I need friends just like everyone else, it's just hard sometimes.  So if you invite me to something and I turn you down, please don't take it personally.  Keep trying, keep talking to me, it means a lot, even if I don't show it well.

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.

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!

Physically Speaking

I still see people who ask how I am doing, physically, after everything and with the pregnancy.  So I will give a quick report.

Sept. 2012, Brigham City Temple

I was given the all clear from my orthopedist (bone dr.) last March and proceeded with two months of physical therapy to help bring my left leg back up to par.  I worked with a great team of physical therapists and before too long I was off the cane and (mostly) keeping up with my running toddler.  Just as I was finishing that up I was given the all clear from my neurology team for the soft neck brace and some physical therapy, so we moved on to that.  I wore the soft brace pretty much all day for about two weeks, then gradually wore it less and less until I wasn't wearing it at all.  I spent another two months doing physical therapy for that with the same team that helped with my pelvis/hip.


I still get some stiffness in my neck, especially if I don't sleep on a good pillow and my neck won't pop the way it used to.  I can pretty much keep up with my little man, but I never was a runner and don't plan on ever being one.  Occasionally the baby will sit somewhere or kick something that makes my hip/pelvis hurt and even before I was pregnant if I stood just the wrong way for too long my left leg would kind of go dead and collapse, but that doesn't happen too often.  There is still a numb spot on the inside of my left knee that sustained some nerve damage.  I could have it looked at, but there really isn't anything they can do about it so there's no point.  It really isn't a bother, just a little weird sometimes.  I still have the pseudo aneurism in my carotid artery and I have to go in for a CAT scan about once a year or so.  I went in before I got pregnant and the dr. gave me the all clear and said to go back for another when I finish nursing.  They said it appears to be healing but I am still on a low dose of aspirin just to be safe.

After the accident I had problems with my scalp.  It got really flaky and I developed huge sores all over, we think it was some kind of psoriasis.  I tried egg yolk masks, coconut oil masks, lavender essential oil, tee tree oil, jojoba oil, tea tree shampoo, and combinations of these and nothing seemed to work.  I am happy to announce that a few months ago my scalp started to clear up and is now sore free!

As far as pregnancy goes, I am having a lot of the normal pregnancy pains and issues.  I was nauseas for the first few months, but never really sick and around week 11 that went away and I have been feeling better since.  Like I said before, sometimes baby kicks or sits in a bad place and makes my left pelvis/hip hurt.  I have been feeling some ligament pain as things stretch and move around.  With it being summer I have been swelling some and I recently picked up a dummy ring to wear in place of my wedding ring on days when the swelling gets too bad.  My belly is starting to look like a baby belly rather than me just gaining some weight and that makes me happy.

All-in-all it is a true blessing and a bit of a miracle that I have healed as well as I have and I really have little residual issues.  I credit that to hard work and to Priesthood blessings.