Baby 36

My newest little cousin was born last night.  He makes a total of 36 cousins on that side of the family.  I won't go into details because I don't have permission from his mommy, but he could sure use some prayers and this is one of the best places I know to go when I need to ask for them.  Please pray for this precious little boy and his mommy (and the rest of his family) for me.  Thank you!

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

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.

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.

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.

My Confession

The first thing I remember after the accident is waking up with a tube down my throat and looking for Lawrence.  I hurt everywhere, but I distinctly remember feeling the pull of the staples and bandages running vertically from my sternum to my pubic bone.  Fear flashed through me as I thought of a friend who went in for a surgery and came out unable to have children.  I asked, with some signs, if I could still have babies, which Lawrence misunderstood.  I soon was back asleep.  Some time later my mom was there and Lawrence told her about my question, she understood and told me that, provided everything healed properly, I should be able to have more children.  I was relieved, a tiny ray of sunshine on my otherwise darkest day.

Seemingly endless doctor appointments followed, at which I inquired about pregnancy and childbirth in my future.  Doctors all gave me thumbs up, in time.

But I wasn't so sure I could do it emotionally.  This is my confession.  Shortly after the accident Lawrence and I attended a grief group for parents who had lost children.  Some of the parents were older and their children were also older, but there were a few others who had lost younger children.  I have also made some connections with other angel mommies, and learned about their reactions regarding more children, following their loss.  I was surprised to hear that many wanted to have more children right away, even some that had previously thought they were done.  I just couldn't wrap my head (and my heart) around it.  I was so afraid of losing another child.  I knew that I would not be able to cope with the emotions of such a great loss again.  I felt that even a miscarriage would push me over the edge.  And I didn't want to do that to Lawrence or to Edward, it wasn't fair.

I kept this my little secret for a time.  But I knew I would have to discuss it with Lawrence at some point.  So I eventually did.  I cried as I poured my heart out to him about this and about other things.  And he held me and listened, and maybe cried a little too.  We talked about how guilty this made me feel, about what it would do to me if we lost another child, and about other concerns, and we kind of left it at that.

Not too long later I spotted a note in Lawrence's iPod noting that this issue wasn't really over, I knew it wasn't.  So we talked again.  And slowly, I started to come around.  I began to realize that the Lord knows what I can handle, and that another loss would put me over the edge.  I started to realize that I was being selfish, only thinking of myself and not about Lawrence, Edward, or any other children that might be waiting to join our family.  I changed my mind.

Now you may wonder why I'm baring my deep, dark secret to the world.  Why I am confessing.  In part, I am sharing this so others who may face this same struggle know that they are not alone.  When I met all these other angel mommies that just wanted another child as soon as possible I felt so alone in my fears, like maybe there was something wrong with me.  I don't want someone else to feel that way.  Also, I am sharing because...

Edward is going to be a big brother!  Dec. 31, 2013.  See, I did come around.