Monday, July 28, 2014

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.

Sunday, July 13, 2014

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.

Saturday, July 5, 2014

(Ir)rational

As we grow and learn in this world we often develop likes and dislikes.  Often these likes and dislikes stem from strong emotions regarding the subject.  For example:  from the time I was about 3 years old I wanted to play the flute.  That's a pretty young age to want something so specific, but I associated the flute with my (then) favorite Aunt, Debbie, and I wanted to be just like her.  Now I play the flute, studied it in college, and teach it to other aspiring musicians-- I still associate it with my Aunt.  Along with these likes and dislikes we often develop fears.  These fears are also usually tied to strong emotions.


About 4 or 5months after the accident I was home alone with Mr. E.  He was napping and I was engaged in some household chore or another.  We were living in an apartment that was part of a large complex.  Suddenly the quiet afternoon was interrupted by the rapid thump-thump-thump sound that only the spinning blades of a helicopter make.  I couldn't help it, I started hyperventilating and crying, the sound was so close.  I looked out my bedroom window and saw the helicopter coming closer and it was obvious it was landing near my apartment.  Then I noticed the life flight emblem.  My breathing and crying became more frantic.  Despite my belief that you should never wake a sleeping baby, I ran to Mr. E's room and pulled him from his crib.  I remember repeatedly saying "they can't take my baby, he's mine, you can't take him."   After several minutes of crying, and shouting at the helicopter that couldn't hear me, and rocking my now upset baby, the logical part of my brain took over and I called Lawrence (I think he was at work) three times in a row-- our signal that something is wrong.  He called me back talked a little sense into me and told me to call my parents.  I finally called my mom and she came and picked us up.  I'm pretty sure I was still hysterical when she got there, even though the helicopter was already gone.  Shortly after arriving at my parents' house I was able to calm down and the whole incident seemed a bit irrational to me.  I was so terrified that the helicopter was going to take my baby away and I wouldn't see him alive again.  But really, how irrational was it?

Even though I don't clearly remember the events immediately following the accident, and I certainly don't remember the helicopter taking Ethne away, that is what happened.  I remember my little girl, alive and trying to open a container of yogurt in the back seat, then I remember snippets of my own helicopter ride, then waking up in the hospital knowing that she was gone.  The helicopter took her and I never saw her alive again.  I still have problems with helicopters.  It doesn't matter if they are life flight or not, I have a small panic attack whenever I hear a helicopter close by.  It used to be worse, but since we moved we hear them flying over our house more often than we used to, so the panic has decreased some.  The logical part of my brain still realizes that panicking every time I hear a helicopter isn't exactly rational, but I can't help it.

Another fear that triggers a bad reaction is cement trucks.  Again, I don't remember the truck hitting the car, but they still frighten me and especially when I am driving.  This can be a problem since I live in Utah and there is always road construction and therefore a fair amount of cement trucks on the road.  I have learned to deal when they are far away, but I really panic if there is one right by me (in front, behind, or on either side).  I have learned to pull over when possible to avoid being too close to a cement truck, but when it's not possible I have to talk myself through and will often drive slowly to allow myself some space from the cement truck.  The latter solution may anger some other drivers, but it's far safer than me having a full on panic attack while driving.

Unfortunately this accident left me permanently scarred, both physically, mentally, and emotionally.  But I am learning to live with all my scars.

Saturday, June 28, 2014

3 - 36


Sorry I've been MIA the last little while, I have been struggling with what to post.  But this post practically wrote itself...


I have been in unfamiliar territory for a few months now, Mr. E passed his sister in age last fall.  But with his birthday here it has become more real.  He is such a sweet, fun boy.  He is doing so many things that make me smile... and others that make me want to pull my hair out.  Since 3 years equals 36 months here's 36 fun things about my big boy.

1. He is all boy!  Guns, swords, cars, trains, outside, superheroes, and busy--boy!
2. He loves to splash in the water, be it the pool or the tub.
3. He can get dressed all by himself.  Sometimes he puts his shirts on upside down, or his pants on backwards, but given another chance he will get it right.
4. Mr. E is mostly potty trained.
5. He gets his shoes on the right feet, without any help the majority of the time.
6. Mr. E loves to read stories.  He reads to himself, but really loves it when mommy or daddy read to him.  Curious George is his favorite.
7. He loves his brother.  Most of the time he plays around Baby J, but there are moments when Mr. E is very sweet to him and they just melt my heart.
8. He speaks very well.  He has lots of words and uses them well, sometimes a little too well.
9. Even though he is a busy boy he likes to snuggle.  He loves one-on-one time with mommy or daddy and snuggles are often what he wants most when he gets it.
10. His favorite movie is a little fluid, but he always goes back to Despicable Me.
11. He does and awesome Bugs Bunny impression.
12. Mr. E is allergic to chocolate and has some kind of dairy intolerance.  We are hopeful he will grow out of this.
13. Mr. E loves to sing.  We sing songs when he lays down for nap time and bedtime and he often sings along, he can also be heard singing while he plays.


14. Mr. E loves nursery.  He gets excited to go to nursery every time he sees us in church clothes-- it's hard to dash his hopes when it's not Sunday.

15. He loves to help me in the kitchen.  He will often grab and chair and bring it to the counter so he can help me make dinner, cake, cookies, etc.
16. He loves chicken.
17. Mr. E enjoys watching tv.  He loves Phineas and Ferb, Mickey Mouse, and Bugs Bunny, among others.
18. Mr. E enjoys doing puzzles and is very good at them.
19. He loves to count and can count to 12 all by himself and 20 with a little help.
20. He doesn't like his hands to be dirty.  If they get messy he stops what he is doing and runs to wash them.
21. He can be very independent and likes to do many things by himself, but every so often he gets it into his head that he needs help with something and it's hard to get him to change his mind.
22. He can be very stubborn (see above).
23. When he gets stuck or sees that someone needs help he calls for "Toodles" to bring a mouseketool to help (Mickey Mouse Clubhouse).
24. He likes to tease.  When Lawrence comes home after he's in bed he hides from Lawrence when he goes to kiss him good night.
25. He still likes to play with my hair.
26. Mr. E loves his Ginger puppy.
27. He thinks the Disney castle is a temple.
28. His favorite treat at the moment is marshmallows.
29. Despite his issues with dairy, he loves cheese.
30. He loves to play with his uncles, they are his best friends.
31. He calls popsicles ice cream.
32. He barks at the vacuum.
33. He likes to tell us what to do, that doesn't mean that we do it, but he still likes to try.
34. Mr. E is a lip kisser.  We don't know where he picked it up, but he kisses everyone on the lips.  If you try to kiss him goodbye or goodnight anywhere else he will grab your face and make you kiss him on the lips.
35. He loves kitties, really he likes just about any animal.
36. He hates anything tomato.








He is a sweet, smart, talented, loving boy and we wouldn't trade him for anything.  Happy birthday, Mr. E!!  We love
you so much!

Monday, May 26, 2014

Memorial Day 2014


This Memorial Day has left me a little more reflective than others have.  Just under a week ago my grandfather passed away and his funeral is tomorrow.  While I haven't had the best relationship with him in a long time, he is still a member of my family and I still care about him.  I hope that he has found some peace.  I know that he is with many loved ones, including my precious angel.  I know that he is now learning from his mistakes and is being given a chance to repent and make better choices.  I feel that Ethne is helping him do this.

I am trying to teach Mr. E to respect the cemetery and those who rest there, but it's hard to listen and to watch your feet when you are a busy little boy.  He will learn.  For now he gets to pick out flowers and take them to his sister, then run around some (while we try to stop him from running over headstones).






I still love that the cemetery puts up over 100 flags for veterans on this day of remembering.  They are so beautiful and the sound of them waving in the wind is calming and mesmerizing.

This tree was planted in the park next to the cemetery, by my family, for Ethne's 3 birthday, her first after the accident.  It continues to reach up to heaven and reminds us to do the same.  I hope that, no matter where I am, I can always remember this.  I hope that I can always honor those who have gone on before me by carrying on their legacy and can always be found reaching for heaven.

Saturday, May 24, 2014

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.

Friday, May 16, 2014

Online Auction for Ethan

Remember a little while back when I posted about little Ethan who is fighting cancer?  Well, Ethan has qualified for a medical study for his leukemia.  The study is in Seattle, Washington, which means he has to travel quite a bit.  To help his family I am hosting an auction on Facebook.  If you would like to bid or donate I will share links to the event page on Facebook and the photo album for the auction when it opens.  I would really like for this auction to be a big success so please share with your friends and family so we can help Ethan and his family.  Thank you all for your support!

Here is the event page.  I'm fairly certain you have to have a Facebook page to view the event, but if you'd like to donate an item or service to the auction and don't have one feel free to email me a picture and description of your donation and I will add it to the auction (if you need to collect money to ship anything please include a shipping charge).  lmeestone@gmail.com

The goodness of people never ceases to amaze me!  Along with the auction I am hosting many people who participate in direct sales companies have opened up online parties to help Little Ethan.  Below are links to the parties and descriptions of each.

A good friend has opened a Pampered Chef catalogue show for Ethan.  Each party booked through this catalogue show means a donation to Ethan and a portion of the sales from each party will also go to Ethan.  Pampered Chef sells quality cooking and kitchen items.

Jamberry Nails is a new way to keep you fingers and toes looking stylish.  These nail decals come in a HUGE variety of prints and colors that are sure to make anyone happy.  They are adhesive and apply with a little heat and can stay for up to two weeks! (that's longer than any polish I've every applied).

And here's another Jamberry Nails party from a different host!  Both of these parties are donating 100% of the profits to Ethan.

Last, but not least, is Origami Owl.  This unique jewelry company features living lockets that you can personalize for you and your story.  Show off your children's birthstones or choose charms that match your hobbies or beliefs, wear it as a necklace or bracelet.  These lockets make great gifts for anyone!

Go check it out!

Friday, May 9, 2014

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!

Friday, May 2, 2014

2 years, 2 months, 26 days

817 days-ish (I'm not super good at math).  Today is the day that marks Ethne being gone as long as she was here, tomorrow will be day 818, and she will have been gone one day longer than she was here, and so on and so forth.  Today I will think about the short time I had with my sweet Princess and the things I have learned from her.  Please forgive me for my rambling...

I remember finally figuring out what her name meant/where it came from, I was still pregnant at the time.  It is the name of a celtic goddess of fire.  When I told my dad he said "You know this means she's going to have red hair."  I laughed it off, thinking that there was no way we'd get a red head, boy was I wrong!  It was the first thing I noticed about her when the nurses laid her on my chest after she was delivered, I couldn't believe it.

Having Ethne while we were still in school was hard, but I wouldn't change it.  She was my ray of sunshine after a tough day at school.  She was a social butterfly and loved to talk to people in the hall when she was at school with us, sometimes even getting upset at those who walked by without saying hello to her.  She showed me a different, softer side of my husband.  She taught me about love and patience.  She brought a very special spirit into our home.  She taught me to find joy in the little things and that slowing down to just read a story or play is always time well spent.  She taught me how to be a mommy and how to love more deeply.  She had a never-ending patience with me as I tried to figure this whole mommy thing out and was always ready with a big hug and kiss whenever I needed one.


I will forever cherish the six months the three of us lived in one bedroom in my in-laws' home, sharing a bed most nights, her little body snuggled tightly against me.  I hold dear memories of snuggling on the couch sharing my favorite childhood movie, "The Little Mermaid," with her.  I still laugh at the way she picked up her giant piece of cake on her first birthday to suck off the bright red frosting.  I think fondly of date nights at Grandma and Grandad Burt's house, playing cards and nursing, and eventually watching Ethne run around with Grandad's cane.  I miss our nightly sing-a-long, prayers, and stories, snuggled in her big girl bed that was once mine.  I miss the patter of her feet as she would bring me princess shoes and dress ups to help her with.  There are still days that I wake up expecting to see her sweet face perched at the edge of my bed, her little finger pressed to mine or Lawrence's nose.  I love how excited she would get to go play with her uncles every day.  I love the way Uncle Gabe just adored her and the way she would yell and tattle on "Igac."  I smile as I watch Mr. E get excited to see his daddy come home and I remember the way Ethne would run to the door to greet him, then turn tail and run away, giggling the whole time (Mr. E isn't quite as good at the running away thing).


But she didn't stop teaching me the day she left this mortal life.  I learn something from her every day.  Sometimes it's something I think I have already learned, but I need to learn it again.  Sometimes it is something about me, sometimes it is something about Mr. E, sometimes it is something about life, or even the Gospel.  I have learned to be more compassionate and to mourn with others.  I have learned even more patience.  I have learned endurance and perseverance.  I have learned the importance of temple covenants, prayer, and scripture study.  I have learned the value of a moment and a memory.  I have learned to treasure each moment with my kids, even the ones that seem obnoxious, because one day I will miss them.  I have learned to be a better mom, to yell less, and let go of some things that aren't worth the fight.  I have learned to always tell my babies (and my husband) how much I love them, because you just never know.

I miss my princess every day and I am grateful that I can continue to learn from her as she continues on her heavenly mission that will be much longer than her mortal life.  I will miss her every day until I see her again and can wrap my arms around her.

Saturday, April 26, 2014

Someone IS watching

Creepy, right?



A few weeks ago I came across an article titled "parent like someone is watching."  The writer talked about how many people act differently when someone else might be watching, especially parents.  A mom will yell less, is less likely to spank, and are often more composed when they are in public and a child misbehaves.  I agreed with what she had to say.  At home, when I run out of patience I am liable to yell, but in public I keep my voice down more.  There are days when I can be very patient and don't yell at all, and then there are days when I run out of patience quickly and I find myself yelling more, and yes, even rarely giving a swat on the bottom.  I feel bad about those days.

As I thought about what I had read I came to realize that someone is always watching.  It should seem obvious that the very children we are parenting are always watching, but not so obvious are the children on the other side and Christ-- they are always watching too.  So I should parent that way.  Since I realized this I have tried to be more patient, raise my voice less, read my scriptures, and pray more.  I find that reading my scriptures invites the spirit so I am less inclined to yell, since that drives the spirit away.  I pray more so that I will be able to be more patient, be more inspired in how best to help and discipline my children, and so I can parent more like someone is watching.  I Love my children and want to set a good example for them.  I don't want them to think of me as their mommy who yells all the time or to be afraid of a spanking, I want them to feel love and support, even in the moments that I want to yell.  I'm not anywhere close to perfect, and I still yell sometimes, but it has gotten less and I find that I am happier, Mr. E is happier, and our home is happier since I started trying to parent like someone is watching.


Also, Happy 4 months to Baby J!

Saturday, April 19, 2014

Surgery

Things for Baby J's surgery really started last Friday afternoon when I got a call from the hospital to tell me what time his surgery was scheduled for and when he had to stop eating.  It really hit that this was really happening and there was an end in sight.

Monday:  4:00 am I woke up and fed Baby J his last meal.  Then Lawrence and I dragged ourselves out of bed, got ready and headed for the hospital.  We checked in at 7am and waited.  Baby J was fairly happy and smiley, and was patient, at least for a while.  We waited some more and waited some more while Baby J became more and more upset, and they finally called us back to finish checking in.  They weighed and measured Baby J then had us strip him and scrub him clean with some special wipes and put him in clean hospital jammies. And Baby J got really mad, he was starving!  Then we went to wait for the anesthesiologist to come get us.  And Baby J cried.  And we waited some more.  And they told us that it would be ten minutes, then a half hour, and another half hour.  Somewhere in there Baby J gave up and went to sleep.  His surgery got pushed back 2 hours because of an emergency.  Finally the anesthesiologist came and we signed some papers.  They took Baby J and told us to check in at the waiting room.  We checked in and my mom stayed and crocheted while Lawrence and I went for food, surgery was scheduled to take 4 hours.  After about 2 and a half hours we got a call from a nurse letting us know that everything was going well and they had about an hour left.  Surgery took just over 3 hours.  Then we went to recovery.  Baby J was crying and in pain.  They gave him medicine and settled him down before sending us upstairs to his room.  The rest of the day was just keeping him happy and giving him medicine for his pain.


Tuesday:  More pain management.  As long as he got medicine as scheduled life was good.  he was very sleepy and had a catheter so there weren't any diapers to change yet.

Wednesday:  Much like Tuesday.  We tried to cut back on his heavy pain meds and they gave him a different pain medicine to help.  We also tried to give him some Pedialyte.  He took some of it, but then screamed and had a lot of pain so we stopped.  At about 6pm I went out to pump some milk and when I came back the nurse informed me that we had poop!  I have never been so excited to see a poopy diaper!  He was still having a lot of pain, mostly from gas so we went back to the schedule for his heavy pain meds.  He continued to do his "duty" the rest of the night and slept well.

Thursday:  Since he pooped we were able to try feeding him more.  We gave Baby J some Pedialyte and he took it anxiously.  Later we tried some milk, which he also took very well... until he threw it up.  So we cut back.  We tried less milk, but he threw that up too.  This was discouraging since we were hoping to go home Friday.  They gave him some anti-nausea medicine and some zantac and he seemed better, but the doctors still said to hold off.

Friday:  He slept well Thursday night and his tummy seemed calmer.  I went and pumped for the morning since the doctors told us to start with the Pedialyte.  He refused the stuff and rooted for milk, so I nursed him.  He was the happiest baby in the world!  He ate for 20 minutes and was content.  They gave him more zantac and anti-nausea medicine and he kept it down.  After 2 hours he cried and acted hungry again, so I fed him more-- he was just so excited to be eating again.  But then there was more throwing up, lots of it.  So then there was a bath and fresh bedding and clothes.  At the tree hour mark I fed him again.  This time he seemed more cautious and didn't eat quite as quickly or as long and he kept it down!  This was a huge milestone for him to get to go home.  The rest of the day went well and he only had one other episode of throwing up.

Saturday:  Going home!  The surgery team stopped by and said that since he kept his feeds down for 12 hours and was taking his tylenol orally we could go home.  It was a long hour waiting for the discharge paperwork to come, but so exciting to go home.


Friday, April 11, 2014

Monday

This coming Monday is the day.  The day Baby J has his second surgery.  The day that will *hopefully* be the start of mont days to come with lots of messy diapers.  I have been doing my best to prepare myself for this day by talking with other HD parents, finding "recipes" for homemade diaper rash creams and wipes (apparently the diaper rash after pull-through is really bad), planning what to pack for myself, Baby J, and Mr. E (he will stay with Grandma and Grandpa), and trying not to think about how long my baby will be under anesthesia.

Lawrence will bless Baby J before surgery, with the help of my dad, maybe more.  And we will be praying for him to handle the surgery well and recover quickly.

Part of me feels that Monday can't come soon enough and another doesn't want it to come at all.  Wish us luck and wave goodbye to his stoma!


Monday, April 7, 2014

Comfort

We all have a little quirk that we use to help comfort us.  When I was young I had this orange, gingham, tied blanket that I liked because I could play with the ties to help me sleep-- I still find myself playing with ties on blankets to this day.  I'm sure you could pinpoint one or two things you do that are similar.

My kids are no different.  Ethne had to touch my rings.  She would hold my hands and find my wedding ring or the ring I wear on my right hand (sometimes both) and rub the diamond with her thumb.  I think it's how she knew it was me.  Mr. E plays with ties on blankets and with hair.  We often find him sleeping with his hands above his head, playing with his own hair, but mommy's hair is best.  It used to drive me crazy, he would wrap my hair around his fingers then pull, hard, to get them out and start over.  He doesn't do the wrap and pull thing anymore, but he still likes to play with my hair, he will often ask me to let a ponytail down so he can play with it.  For now Baby J likes to be swaddled or held tight, even in the NICU they had to use a "frog" (a weighted bag that they place on babies to make them feel like they're being held) to keep him happy at nights when we weren't there.  But there is one constant comforter for all my babies-- music, or really, one song in particular, "A Bushel and a Peck."

A while back I posted about how this song became a staple in our home.  Those memories of singing with Ethne, her wrapped tightly in may arms while she rubbed my rings are still among my favorites. Her sweet voice in unison with mine as we would sing "doodle, doodle, doodle..." is something I never want to forget.  After the accident it was often the only thing that would settle Mr. E down when he got upset and now it is the last song he wants to hear before he goes to sleep.  This song is the first thing I "said" to Baby J after he was born, I couldn't think of any better words to give him,  and now it is also a great comfort for him.  When I share this simple tune with my boys I like to think that their sister is with us, singing right along and helping to comfort all of us...



"doodle, doodle, doodle, doo..."


Monday, March 31, 2014

Paying it Forward

I love nursing.  I enjoy knowing that I am giving my baby the best I can and I enjoy the bonding time it gives me with my baby.  I nursed both Ethne and Mr. E (yes, even after the accident) for just over a year each.  Mr. E was more of a challenge to get to that year, but after the accident I pumped until I was cleared to nurse him again, and it was totally worth it to me.

While Baby J was in the NICU I pumped breast milk for him.  I spent about 20 minutes of every 3-ish hours with a pump trying to get as much milk as I could for the day they would allow my sweet boy to eat.  Primary's has a special pumping room and freezer just for this purpose.  I quickly discovered that I had a more than ample supply and was pumping more than many of the other moms, I kind of became famous.  When Baby J was finally allowed to eat I would freeze half the milk from a pumping session and give the nurse the rest for him.  He had to start off slowly so he wasn't using very much milk.  Then, a few days before discharge they asked me to stay with him so they could observe him nursing for 36 hours.  So when Baby J was discharged they sent me home with all my pumped milk, to add to the freezer-full I had at home from night pumpings.  I had all this milk and couldn't foresee myself using it before it would "expire" (frozen breast milk is good for 1 year).


I asked about donating milk to Primary's, but you have to do blood tests before the milk is pumped, so that wasn't going to work.  Then I thought about selling it (apparently there is a market for that on Craiglist).  But that didn't seem a right fit either, after all, the milk was free for me and the hospital provided the bottles I used to store it.  Then I found a Facebook page called Human Milk 4 Human Babies- Utah.  It is an exchange where women who pump more than they need offer their milk to other women who, for whatever reason, can't provide breast milk for their babies.  Many of the moms looking for milk have adopted, had mastectomies, lost their supply, or have gland disorders, but they still want to provide breast milk for their babies instead of formula.  This seemed right to me.  We have been so blessed through everything, why not help bless someone else?  So I posted that I had a bunch of milk and waited to hear from someone that needed it.

That mom just came and picked up most of my pumped milk.  She has a sweet baby girl that will benefit from that milk that otherwise would probably have gone to waste.  Now I have room in my freezer again and she has milk for her baby.  It felt really good to help someone else and pay it forward at least in a small way.

Tuesday, March 25, 2014

It's a Love-hate Thing


It often feels like people are perplexed about grief as an emotion.  Sometimes grief can be short-lived, especially when it is over something small or something that can be fixed.  But other times it is long lasting, it's not something that a person can just "get over."  What people seem to misunderstand about grief is that it is not an independent emotion.  Many emotions are felt just for themselves, we feel sad because we are upset over something, we feel love in spite of other feelings about someone of something (for example I love Mr. E even when I am angry with him), but grief seems to work a little differently.  People only tend to grieve over things they care about, over things they love.  I love Baby J and that is why I felt grief over his HD and the things he will have to endure because of it, parents of wayward children feel grief for the actions of their children because they love them.  If there is no other emotion tied to someone or something there is likely no grief.  That is why losing a child is so hard.  We grieve for their loss because we love them eternally and until they are no longer gone from our presence that grief will continue.  Grief is a love thing, and sometimes I kind of hate that it is.  




The other day I watched the new Disney movie "Frozen."  I was enjoying the cute story and the fun music when the snowman Olaf showed up.  "My name is Olaf and I like warm hugs!"  Olaf's song and antics brought a mix of emotions from me, tears and laughter.  You see, Olaf made me think of Ethne and how much she would have enjoyed this movie.  She was so much like Olaf, my cuddly little girl who loved to make people smile and loved to give hugs.  This time of year can be hard too, with all the frilly dresses for spring in stores, I wish I had a reason to buy them.


Sometimes I wish I could turn it off and enjoy things that seem to trigger my grief, like admiring girlie spring dresses and watching Princess movies.  But then I realize that not feeling this grief would be to not feel my love for Ethne and I don't want that at all.

Saturday, March 22, 2014

So Close and yet .............

Ethne had a way that she would snuggle with me when things weren't going her way. I call it my "Grandpa can fix anything for Ethne" snuggle. I will get back to this in a moment now.






Today, Lawrence texted me and said that he and Mr. E were going to go to Autorama and asked if we wanted to come. It is something that we share in common, a love of all things cars. So we had a boys day. Lawrence, Mr. E, Gabriel, Isaac and I went to the Autorama, (Josh had to work). So we spent a couple of hours then went to lunch (hot dogs at Wienerschnitzel, such a guy thing). Mr. E was Mr. E through and through. It was a fun day. There were some great restored classic cars. We all found our favorites.

Lawrence was scheduled to play his bass with the Oquirrh Symphony later this evening. We net Melissa and her boys there. As the concert began, Mr. E wanted to sit on Grandpa's lap. Never one to shy away from this time, I gladly sat him up. Part way through the first number he snuggled into me. Not his normal way of sitting with me, but in Ethne's way. It was very brief, and very real, and I was certain that it was her on my lap with her red hair nestled into me. It was a feeling that I had all but forgotten after two years. But it was her way of being part of the family this day after the time we had spent together with her parents and siblings today.

Thanks Princess for the reminder, and thanks Mr. E for being the messenger.

Scott




Thursday, March 20, 2014

Little Ethan

Today I want to share someone else's story.

Our superhero!

Two doors down from my parents lives a wonderful family of 8.  They have mom and dad with 5 boys and one girl.  Among these 5 boys is little Ethan.  Ethan is the same age as Ethne.  At 22-months old Ethan was diagnosed with Acute Lymphoblastic Leukemia (ALL).  Ethan was given a 3 year plan for chemo to treat this aggressive cancer.  Summer of 2012 Ethan's cancer went into remission.  Life was good, prayers were answered, and shortly before this boy #5 was added to the family.  Unfortunately the remission only lasted one year.  They tried chemo for 5 months with no luck, so Ethan was given an experimental drug to help him fight.  Fortunately the experimental drug worked after only 4 weeks, he was in remission again!  This time around they decided to to a bone marrow transplant.  Ethan's family was tested for compatibility and his younger brother was a match!  After countless blood tests, cranial radiation, and more chemo Ethan received his little brother's donated bone marrow.  This was in January this year.  After 16 days the transplant engrafted and was considered a success, Ethan was on his way home!

Through all of this his family has seen so many miracles, blessings, and answered prayers.  Ethan was granted a wish through the Make a Wish Foundation and he and his family went to Disney World, they added a healthy and happy baby to their family, VIP concert tickets to The Piano Guys were gifted to Ethan, the old swamp cooler in their home was replaced with central air, and so many other generous gifts were given.  They are truly grateful for the outpouring of generosity and love they have seen throughout all of this.

Early this week Ethan went in for a routine appointment and it was discovered that he had RSV.  He was admitted to the hospital for treatment.  But there was something else wrong in the blood tests.  The cancer is back.

When his mother shared this on Facebook my heart broke.  This wonderful family has been through so much and sweet little Ethan is such a fighter.

Today I ask for prayers for Ethan and his family.  Prayers that doctors will know how to help bring Ethan back into remission, prayers that Ethan will not get too sick through this new course of treatment and that he will have the strength to endure it, prayers that his family will have the strength they need to endure this again.

If you want to know more about Ethan's story you can find it here.

Sunday, March 16, 2014

Blessing Baby J

In the LDS church (and many other religions) we give babies a name and a blessing, often within the first few months of life.

With all of the goings on with Baby J figuring out when/where to have his blessing was a bit of a challenge.  We haven't wanted to take Baby J out much to keep him healthy before his next surgery, so we decided early on that we would try to bless him at home, it was just a matter of getting it approved by our Bishop.  The problem with that was that Lawrence is sometimes forgetful and kept forgetting to ask the bishop if it would be alright, until about two weeks before the planned blessing date.  Then he forgot to fill out the paper for the blessing until the week before.

Then there was figuring out a date.  We wanted to include family that wanted to be there and of course both our parents.  There was a small conflict with a baptism the day before, but it all worked out for March 9, most everyone we wanted to have there was able to come and many others were there in spirit.





I decided to make his outfit.  Mr. E wore Lawrence's blessing outfit and it barely fit, so I knew Baby J wouldn't be able to squeeze into it, plus I want each of my children to have their own blessing outfits for the future.

Family drove for hours just to share this special day with us, a special day that, at one point, I was afraid might not happen.  It was so good to have each and every person there with us.  Lawrence gave a beautiful blessing that told of future missions, faith, and strength.

I am so thankful for this strong, beautiful boy we have been blessed with.  I am also incredibly grateful for my husband and the priesthood he holds, that he was able to administer this blessing to Baby J.  I honestly feel inadequate as his mother, hearing that he has specific missions to fulfill.  I hope that I can raise him to be the man the Lord needs him to be so he can fulfill those missions.


Monday, March 10, 2014

NICU

Congratulations!  You (or your wife) just had a baby!  But there are complications…  baby came early, or baby isn't breathing well, or baby aspirated meconium, or baby isn't pooping, or baby is severely jaundiced.  Your baby is going to the NICU (neonatal intensive care unit).  Suddenly your baby is taken away from you, stuck with an iv, and placed in a plastic crib.  You follow in a daze a nurses wheel your precious newborn through locked doors and into a dark room where they place monitor probes to his chest, tummy, and hands.  A doctor introduces herself but you instantly forget her name.  The nurse placing probes also introduces herself then ushers you out to the receptionist who hands you a clipboard and asks you to fill out the paperwork on it.  Before showing you to a waiting room the same receptionist explains the rules 1) to get through the locked doors you pick up the phone on the outside and tell them you are there to visit your baby 2) you must clean under your fingernails and thoroughly wash your hands and arms up to your elbows, dry, and apply sanitizer before seeing baby 3) only two visitors are allowed to be at your baby's bedside at any time 4) if you are sick, stay away 5) no one under 14 is allowed past the locked doors.

You finally sit down, still in a daze and fill out the paperwork.  After all the insurance information and family history is complete you approach the locked doors, pick up the phone and ask to see your baby.  The doors open, you hand the paperwork to the receptionist, then set about the task of scrubbing in.  Finally, you are able to see your precious bundle of joy.  You enter the dim room and notice, for the first time, the monitors at every bed, the tubes, the pumps, and the pervasive quiet that is interrupted only by the beeping of monitors.  The nurse who introduced herself earlier smiles at you and meets you at your baby's bedside.  You tentatively reach out to touch your baby while the nurse starts telling you about the plan for your child.  They are giving him antibiotics to prevent infection and keeping track of everything he takes in and puts out.  Your baby has wires and tubes stuck to him that connect to the monitors and other gadgets that are helping him with whatever he may need.  This is when it really hits you, your baby, your perfect baby that you have been waiting for, is sick.  The nurse has long since stopped talking and is watching you come to this realization, something she has seen more than once.  She ushers you to a chair and (depending on your baby's condition) helps you hold your baby (or your baby's hand).

Welcome to the NICU.  We spent 2 weeks in this foreign place that few visit, and never by choice.  The rooms are kept dim and quiet to promote healing and the nurses are angels sent from heaven.  When a baby visits the NICU it is because they are too sick for a regular pediatrician to handle, they may need surgery or help breathing, they may have been born too early or have a spinal cord defect, whatever their problem, they are in good hands.  Nurses in the NICU are a special breed of human being, able to deal with the chaos of sick babies who can't help themselves in any way and can't push a button to let them know when they need something.  These amazing nurses see tragedy and happiness in their rawest forms as they work with babies who far too often leave this mortal existence far too soon and with those who overcome their struggles and leave happy and healthy.  They cry with parents as they watch their precious blessings endure more than many adults do and celebrate the little things (and big things) on the road to recovery.  NICU nurses deserve special respect and admiration.

But it's not just the nurses that deserve accolades.  The parents who stand by their babies day and night as they battle whatever it is that has put them there are special too.  Mothers, who are recovering from childbirth and often c-sections sit and watch and wait for the opportunity to hold their baby, often for the first time after days or weeks of treatment and who pump breast milk to nourish these little blessings, deserve extra love.  Fathers who spend their free time standing watch over their new bundle and go to work or to tend other children are also deserving of special praise.  These parents spend hours and hours worrying over their babies, learning medical jargon, researching treatment, and praying that their baby will be safe and come home healthy.







With all this in mind I want to extend a special thank you to our nurses.  We had fantastic nurses every day and night.  They were always there for us to answer any questions and to encourage us.  They were positive about everything that was happening, but still honest.  They encouraged us to make sure we were taking care of ourselves as well, so that we could continue to care for Baby J.  They alerted us to changes in his care and were always so patient with us.  Thank you to our wonderful nurses, for all you did for us.

I can't forget the friends we made while in the NICU, the other parents that were in the same (or at least similar) boat as we were.  They also had sick babies to care for, but they were also there for us.  We cheered together whenever one of our kiddos made good progress and we sorrowed when there was a setback.  We chatted to help pass the endless hours of quiet and admired each others' babies.  We have kept in touch with some of the other parents and are hoping they are life-long friends.  We still share in each others' joy and progress with our little ones, it is a friendship born of trial that only other NICU parents can truly understand.  Thank you to these other parents for making the NICU a slightly more friendly place.

Find more insight into the NICU here and here




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