Dylan's Surgery

Dylan had his surgery on Tuesday.  We were supposed to check in at the hospital at 6:00 a.m.  In some ways, it's really nice to be the first surgery scheduled for the day.  In other ways, it makes it tricky.  We worked things out with my mom to be to our house to help the kids get off to school and to tend Rachel.

Dylan was surprisingly happy when we got to the hospital.  He knew why we were going so I thought he would get upset when we got there.  He played with toys and did things he was asked without much question.  He did start to get nervous at one point and kept saying he wanted to go home.

When they were wheeling him toward surgery after we kissed him and told him we would see him in a little bit, he cried out, "But don't go home!"  I thought it was cute that he was worried we would go home while he was still there.

A little bit into the surgery, one of the nurses assisting called us in the waiting room to let us know that the cyst didn't appear to be a thyroglossal cyst like they had thought, but a dermoid cyst, which is much easier and less involved to remove.  That was good news.  Later when the doctor came out to talk to us, he said he saw no reason why Dylan would have to stay the night like we had been planning.

After spending some time in recovery (doesn't matter if they give Dylan anti-nausea medicine, he still hurls at least once after anesthesia), we were able to go home.  Dylan perked right up on the way out of the hospital.  Sitting in the car, waiting to go, he said to me, "It's morning."  It was about 10:30.  It had been very dark for the drive to the hospital, so Dylan hadn't realized it was morning.

It was easy to tell when Dylan needed more pain medicine that day and the next couple of days.  He would hold his neck very still and move kind of stiffly.  Once the pain medicine kicked in, he acted like nothing happened, so I let him go to preschool yesterday.  Today he hasn't needed pain medicine at all, but I'm sure he will be even happier once the steri-strips come off.

I didn't think Dylan would feel well enough to go to preschool at all this week.  Thought going to church this coming Sunday would be questionable.  I'm glad he's doing so well and that his surgery is behind us.

I did get a call today from the doctor with the pathology report.  Said it seems to be the dermoid cyst like they though, so nothing to worry about.  Yay for good reports.

Quick Trip to Idaho

About a month ago, I mentioned to my mom how Molly had written a small story at school about taking a trip up to Idaho to visit her cousins.  She wrote how it was a really long drive but how she had so much fun and hopes she gets to go again.  We said it would be fun to take another quick trip up over UEA, which was coming up in the middle of the month.  That chat set things in motion and we decided to go.

Jimmy stayed with Russ' parents for most of the trip.  He had just gotten a leopard gecko and was worried about Russ taking care of it. Plus he didn't want to drive that long.  We made good time heading there and so decided to wait until we got there for lunch, having left in the morning.

We had a good time visiting.  We didn't go swimming that first day, but did the next.  The pool wasn't as cold as I remembered it.  Might have helped that the weather that weekend was cooler.

We spent time just hanging out at Stacey's house, which was interesting with my youngest two being afraid of dogs.  They did eventually get brave enough to actually touch Ozzy, Stacey's Great Dane/Mastiff mix.

On Saturday we went to the open house for the Boise Temple.  Rachel kept taking off and kids were excited to be with cousins, but overall it was a better experience than going to the Brigham City contractor's open house.  I think counting the drive to a ward building, riding the bus to the temple, touring the temple, then the bus ride back to the ward building took less time than we stood waiting in line just to get in the Brigham City open house.

We drove home on Sunday.  Emma sat by Rachel for the ride home and was very good with her.  Played with her and kept her entertained for the 5+ hour ride.  Rachel stayed awake until we were just a few minutes from home.  It was nice that Russ had picked up Jimmy from his parent's house the day before so we didn't need to get him on our way home.  After that drive, making an extra stop didn't sound fun.

All in all, it was a fun trip to visit my sister and her family.

Going Diaperless

A few weeks ago I drove to Idaho with my mom to visit my sister.  The day or two before we left, Rachel started to show a lot more interest in using the toilet than she had for a while.  She stayed dry for the drive.  I took her to the bathroom once during the trip and she happily used the toilet there.  Her diapers stayed dry most of the time in Idaho with Rachel often saying she needed to go and running to the bathroom.  Once we were home from the trip (I'll post about that momentarily), I put her in underwear.  She hasn't used diapers since.  She essentially trained herself.  Man, I wish all of my kids had been this easy.  As it is, 2 out of 6 isn't bad.

The last time I didn't have anyone in diapers was a brief month just before Dylan was born.  I've gotta say, it's kind of nice walking past the diapers in the store and thinking how I don't need to buy them any more.

Belated Birthday and Surgery Date Set

Rachel turned two years old the day after my last post.  I'm a bit late in posting happy birthday to her.  She is the happiest two year old.  And man, she's a two year old.  Gets into everything she can. And typically with that grin she has in the picture.  She loves her brothers and sisters.  Especially Dylan.  While he's at preschool, she's often asking if it's time to get him yet.  The other day she stood in the front door calling to him, "I need a hug!  Come hug me!"  And like the good big brother he is, he went and gave her one.  I am glad she's a part of our family.

In my last post I talked about Dylan needing surgery.  I met with the pediatric otolaryngologist whom I have taken some of the kids to before.  He removed Molly's tonsils when she was two.  Anyway, he agreed with the pediatrician's diagnosis but ordered an ultrasound of the cyst to be done at Primary Children's Medical Center.  That was scheduled for the following Monday.

Dylan was very good for the ultrasound.  He held very still and followed the technician's orders.  Having seen many echo cardiograms for him, I knew what she was doing when blue and red flashed on the screen.  She was checking to see if there was any blood flow to the cyst.  There wasn't, which is a good thing.  The radiologist came in and looked at the results of the ultrasound.  She said that she couldn't say with 100% certainty that it is a thyroglossal cyst, but that's most likely what it is.  It is atypical.  Most are right on the midline where his is off to the side slightly.  Plus it's not actually filled with pus like they usually are.  Her exact word she used to describe it was "gunk."  My thought to that was, "Of course it's atypical."  Dylan doesn't seem to like to follow the norm.

Later the otolaryngologist called me and said he likes to have another doctor assist with the surgery, but the other doctor would be going in and out of town so he would have to get with him before they could schedule it.  A few days later his secretary called to schedule it.  Dylan has his surgery on Tuesday, November 6.  He will be in the hospital over night and will have a drain that will stay in his neck a day or two.  He will need to take things easy for several weeks.  The surgery itself will take 1 1/2 to 2 hours.

A little bit of trivia for you.  Twenty-eight years ago I was in the hospital after having my appendix removed.  I was there over November 6th, which was the day Reagan was re-elected for his second term of office.  Dylan will be in the hospital overnight on the upcoming elections.  I wonder if he will think the same thing I did as my family watched the election coverage in the hospital room.  "Isn't there anything else on?"

More Surgery for Dylan

If you scroll down to the previous post and look at the picture of Dylan, you will notice that he has a large adam's apple.  Or that's what we figured it was.  Thought it a bit strange that someone so young would have such a pronounced one (or one that showed up at all, even), but I never would remember to ask the doctor about it.  Well, until yesterday, that is.

I took Dylan to the doctor yesterday and while there happened to mention the adam's apple to the nurse.  She looked at it (have I mentioned that I really like this nurse?  Almost like her better than the doctor) and kind of frowned after she felt it.  She said she was going to go get the doctor to come in and look at it.  At which point I knew it wasn't just a large adam's apple.  When the doctor came in, he took one look at it and said that it was a thyroglossal cyst and needs to be removed.  Which means that Dylan gets to have another surgery.  Well, after we meet with the pediatric otolaryngologist.

If you google "thyroglossal cyst," one result that pulls up is a video on youtube of the surgery to remove the cyst.  I can't bring myself to watch it at this point.  I have watched the video there of open heart surgery to repair truncus arteriosus, but not until at least 3 years after Dylan had his.  Another result was for a website explaining things about it.  According to that website (which I would post a link to but I can't remember which it was), it can be a congenital defect that may not be seen until later.  Also if it's large, it can cause breathing problems.  Large was considered anything bigger than 1/2 inch.  Without measuring, I would say Dylan's is bigger than that.  But he has no breathing issues.

I take Dylan to the otolaryngologist near the end of next week.  I will try to remember to update when I know more.  I just feel bad for him that he will need more surgery.  He was afraid all last night that I would take it out while he was asleep.  He kept saying he likes it there.

First Day of School and Molly's Birthday

This year school started the same day as Molly's birthday. Molly was thrilled. Really, she was. She loves school and was excited to think about starting again on her birthday.  We had cake for her birthday the day before with Russ' family since we were all together for Labor Day.  She wanted a Doctor Who cake.  She did get one.  Wasn't a great one, but she got one.  Several things kept going wrong in attempting to make her cake, so it ended up being a picture of the TARDIS on her cake.  With the extra cake from the previous 3 attempts at making cake (like I said, several things went wrong), I made cake balls shaped like Daleks.  Had I had more time, they would have looked better.  They tasted pretty good though.  At any rate, I'm not posting pictures.  Just don't feel like it.  Molly was happy with her cake, at least.  The day after her birthday we let Molly take one friend and went to the dollar theater and saw Madagascar 3.  It also happened to be the day the city does a car show and free ice cream cones so we went a little early and got ice cream.  Everyone had fun and we thought the movie was cute.

Anyway, back to the first day of school.  Jimmy started the 8th grade.  He's nearly as tall as I am (which isn't saying much), but I'm sure he will easily pass me up before the year's end.   Someone had taken my camera and changed the settings on it, so his picture here isn't great.  He wouldn't really let me take one once I fixed the settings.

Emma started 5th grade.  That one is almost harder for me to believe than Jimmy's being in the 8th grade.  She did tell me just the other day that she actually reads on a 7th grade level.

Molly started the 3rd grade.  This is the first year she doesn't have her cousin in the same class with her, so she was a bit nervous but so far loves it.  She brought home a paper today requesting permission to take part of an SEM study because she has shown creativity, ability, etc.  She will meet with a small group weekly.  In the group, they will be creating their own countries.  She's excited about it.

Alyssa started the 2nd grade.  She was a little sad to find out that a friend of hers wasn't in the same class, but seems to be doing well so far. She is actually the easiest to get to do homework.  I think she likes knowing it's done and she doesn't have to worry about it.

Dylan started preschool two days after the others started back to school.  He loved it.  He was a little nervous about going but had a good time. Helps that he knows a couple of boys in his class.  Rachel seems to miss him the most.  They are very cute together.  Rachel will give Dylan hugs and kisses if he's sad and he does the same if she's sad.

Why I Need Intermountain Healing Hearts

The path a parent of a child with a health issue can be a lonely one.  Our friends and family offer love and support as they can (in most cases), but most often they don't know what it's like to go through it.  Even though I am a twin, I don't feel qualified to give mothers of twins advice.  I don't know what it's like to be a parent to twins.

At the first Heart Mom Luncheon held by Intermountain Healing Hearts, Margaret Cardall, mother of composer and pianist Paul Cardall, spoke of her journey of being a heart mom.  She stated that she didn't know any other families dealing with congenital heart defects.  In my recollection, she said at times she felt very much alone.  The internet or groups like Intermountain Healing Hearts weren't around then, so she had no way of connecting with other heart moms.

Honestly, I haven't felt that loneliness.  Not really even the day we found out that our unborn son would be born with a serious heart defect.  My sister has a daughter with a hole in her heart that never has required surgery. I also have a close friend who has traveled  the same path of a serious heart defect.  One of the first things she did when she heard the news was to contact a lady who had been on the board of a support group for congenital heart defects.  That lady informed her that the group they had been a part of really wasn't used any more, but let her know about Intermountain Healing Hearts.  My friend then emailed me the information, and I didn't wait to contact the group to join.

The day we learned that Dylan would have a CHD was a hard one for me.  I've probably mentioned on this blog before a bit about that day, so I am likely repeating things.  Every time I would feel his movements, my stomach would sink and I would think "heart defect."  We didn't know which type of heart defect he had at that point.  I asked Russ to give me a Priesthood Blessing that night, and he did.  It was a beautiful blessing where we both strongly felt comfort and peace from  Heavenly Father.  Neither one of us could hold back tears.  The stress and almost panicky feelings left me completely.  Later I would find myself wondering if I were in denial about his heart defect since I wasn't stressing about it.

I did have worries though.  I wondered what would happen after he was born.  We had been given a tour of the PICU at the children's hospital, and were told that likely we wouldn't even see him after he was born, that he would be taken directly to the NICU of the delivering hospital before transferred there.  The nurse who gave us the tour also mentioned Intermountain Healing Hearts.  She was glad when I told her we knew about the group and had joined.

I posted a few questions and was given knowledgeable answers.  My favorite answer in regards to questions about older siblings was that we always say that these heart kids are special, and they are, but their siblings are just as special and go through the heart journey too.

After Dylan was born, we met other families whose children had recently had open heart surgery and who were also members of Intermountain Healing Hearts.  We didn't have to find them, they had kept up with the group and found us.  Others also visited us during his 18 days there.  They knew what we were going through, they had done it themselves.

Even now, when we are in a more calm and settled section of this path (and hopefully it will be a while still before Dylan will need his next surgery), it's still nice to be part of the group. There's something comforting and amazing about being in a room full of other families going through the same struggles like I was earlier this month at the annual family camp.  Even though we are all on the path of a heart family, our journeys are just a little bit different.  Despite that, they know what it's like to have your child's cardiologist tell you that if your child were to get the flu, it could be very bad for him.  And the worry when the flu does hit your house a short time later.  (And for clarification, I'm talking about influenza, not typical stomach virus.)

I'm nearing the end of a two year term as vice-president on the governing board for Intermountain Healing Hearts.  IHH has been such a blessing to me, that when it was announced that nominations and elections would be held for the governing board, I decided to go ahead and offer my nomination, despite having six children to take care of, one being a newborn baby.  I wanted to be able to help how I could for this group that did so much for me.  I hope I have.

Nominations are soon going to open for the next two year term on the governing board.  They will open up the day of the Heart Walk, the biggest fundraiser for IHH.  I think I will miss being on the governing board (yes, I realize I could run for governing board again, but think I will wait.  Maybe in another two years).  It was a big step outside of my comfort zone to do it, but I really have enjoyed my time serving.  I sincerely hope that there are lots of people considering being a part of the governing board.

Going back to the title of my post as to why I need Intermountain Healing Hearts, even though I'm not currently struggling, I know the time will come when Dylan will need more surgery.  I know that as with his first surgery, many of these families, who may be going through their own struggles, will think and pray for him.  He will grow up attending events and getting to know other kids his own age who face the same issues he does.  He will never have to feel alone in his journey.  And that is what it's all about.

Happy Birthday Dylan!

I'm a couple of days late, but happy birthday to Dylan!  He turned 4 this year.  In a little over a month, he'll start preschool.  He sure is growing up quickly.

On his birthday, we went out to lunch with my mom, my aunt, my sister and her daughters.  Dylan requested Training Table, so that's where we ate. He seemed to have a good birthday.

Today he had his 4 year well check, which he wasn't thrilled about.  Especially the part where he got four shots.  He was happy and gave big smiles at the start of the doctor visit, but got more and more unhappy with being there so got quieter and quieter and wouldn't smile again.  He is now at about the 60% for both height and weight.  I think he actually weighs the same he did a year ago, but no one said anything about it at the doctor's office.  I'm going to have to find what I did with the growth chart I have for him and look it up.  Not that it will make a difference, though.  He's basically average for his age.

More Stitches for Dylan

Yes, I'm a bit behind on posting.  But at least I'm trying to catch up, right?  Anyway, a few weeks ago Dylan was playing with his sisters and fell into a bed frame and cut just above his lip.  He ended up with three stitches.  He was actually really good taking him to the doctor.  Only cried with the last stitch, because that one hurt him a little bit.  He was lucky and the numbing cream worked well enough that they didn't have to give him any numbing shots.  His lip looked better and better each day and by the time the stitches came out (which we took out ourselves after he fell asleep because he was a little scared about getting them out), it was back to normal.  Well, as normal as it will be now with a nice little scar.  

As we were sitting in the procedure room of the instacare, I commented to Dylan that one of these days I really need to get him the t-shirt that reads, "Chicks dig scars."  And maybe someday I will.

Dylan's Latest Echo

Early in May, Dylan had his routine echo cardiogram.  It had been scheduled as a sedated echo, but we were able to try it unsedated.  I was very happy when he held perfectly still and let them get all of the pictures they wanted of his heart.  He was happy watching the television shows they had in the small room, and would occasionally turn his head to look at the screen showing his heart.  Granted, I think a big part of his holding so still was that his Grandma Jamie bribed him ahead of time.  Told him that if he held really still and let them give the echo that she would buy him a box of blocks.  He loves blocks so it was the kind of bribe that really worked for him.

His echo went well.  He obviously still has quite the leaky pulmonary valve (seeing as he doesn't really have a pulmonary valve), but his heart is doing well.  Well enough, in fact, that we don't have to take him back for another year!  That's the longest he has ever gone between cardiology appointments.  I'm hoping that means that surgery will still be a few years away (last year his cardiologist said that his heart cath postponed surgery a "couple of years" so I've always kind of figured it would be sometime before he starts kindergarten).

Dylan has really grown up over the last year and a half.  He used to be quite afraid of adults other than his dad and me.  But he now seems basically over it.  Still gets a little shy at times, but will actually talk to adults when they ask him questions (well, most of the time) and goes to his class at church without issue.  He's even excited about going to preschool in the fall.

Happy Birthday Alyssa!

Today is Alyssa's 7th birthday.  We had a birthday party for her yesterday.  It was a hot day so we made it a water party where we had water balloons, squirt guns, and a slip 'n slide.  Well, we also had a pinata, but we always have one of those.  Everyone seemed to have a good time.  Even Russ, who at the very end started to pick up kids and swing them and then let go so they would slide quickly along the slip 'n slide.

I made her a cake with some horses made out of fondant.  I was actually pretty happy with that one.  Needed to take more time when I painted the food coloring onto the horses, but I was still happy with them.  Not so happy that I had to make the feet after they accidentally got melted, but was glad it wasn't more.

Happy birthday, Alyssa!

Ah! I Have a Teenager!

I'm a bit late on posting this (which seems to be the story of my blog lately), but about two weeks ago, Jimmy turned 13.  Yep, I am the proud parent of a teenager now.  He didn't get a big party this year.  He planned one and decided to cancel it when he saw the forecast showed that it would be cold and stormy.  Instead he went with a friend to Boondocks and had a good time.  I made him a cheesecake that he ate all by himself.  Kind of planned on that and actually made a second cheesecake and a regular cake for everyone else.  What can I say?  My sweet tooth was acting up.

So even though it's belated, happy birthday Jimmy!  I hope this coming year is a great one for you.  And I still need to get around to telling you about the day you were born, don't I.

*By the way, he said he hates this picture of himself.  Which he wanted me to mention.  And so I did.

Playing Catch-Up

Yes, I realize I am way behind on my blog. I blame that (at least partially) on not having a working camera. Thanksgiving, Christmas? No working camera, no pictures. Well, I suppose I have a working camera with my cell phone, but it really isn't a good camera. Yet it's better than nothing at all. Which is why I am including a couple of pictures in catching up. Even one relating to Christmas.

The holiday season was a nice one.  We spent Thanksgiving with Russ' family.  It was one of the few years that all of his brothers and sisters were there.  We had some family pictures taken, which I'd include but I didn't find them quickly and am feeling a bit lazy to search more for them. I may post them at a later time.

Christmas was nice as well.  We always spend Christmas Eve with Russ' family and did so again this year.  On Christmas we went to my parent's house and had a nice dinner with them.  Both of my sisters who live nearby went on vacation over Christmas so it was just us.

We have a tradition of opening up new pajamas on Christmas Eve.  Used to just  be to open a present, but it's become opening pajamas.  Jimmy made presents for his sisters and brother (except for Rachel because she is a bit young for it) and we also let them open the gift from him then too.  He made them each pillows.  Did most of the sewing for it himself.    This is a picture taken that night in their new pajamas and with their pillows. 

Later I took this picture of the kids.  Not all were thrilled to have it taken.

We drove up to Boise over New Year's weekend to visit my sister.  Her son got baptized that weekend.  We had fun going up and visiting.  I didn't get a single picture that weekend. 

The next weekend, Rachel was playing with her sister and tripped and hit the bridge of her nose along the edge of the tile and cut it nicely.  I took her to the instacare even though I figured it wouldn't need to be stitched.  They did put glue on the cut because she had some loose skin and it would keep it protected and safe from infection.  She still has a ridge on her nose from the loose skin and how it refused.  I'm sure she will have a scar from it.  This picture was taken shortly after she hit it and after we wiped away some of the blood.  She had nice black circles under her eyes for a while.

As I've mentioned before, the week of Feb 7 to Feb 14 is National Congenital Heart Defect Awareness week.  I helped with Intermountain Healing Hearts to make sure we could still have a banner hung on the parking garage for Primary Children's Medical Center and we had a table set up on the 3rd floor of the hospital with cupcakes, fliers, and other things to help spread awareness.  A.Rae, the historian/angel liaison on the governing board for IHH was very nice and made some pictures for use on Facebook for some of us who have children with heart defects.  She made this one for me:

I also went with Brytten to Capitol Hill during CHD week. We were representing IHH at Non-Profit Day on the Hill.  We had a chance to talk to some of the representatives up there about IHH and what we do and a little about pulse-ox testing of newborns.  I think it turned out well and we were able to talk to several people.  They wanted one person to go take notes to the representatives and to speak with them and the other to stay at the table we were given to use to talk to anyone who might come by.  I stayed at the table.  My representative for where I live happened to walk by the table so I was able to talk to him.  We basically had our table there set up like we had the table set up at the hospital, only we also had the posters IHH uses at events.

 While we were both sitting at the table waiting for things to get started, we had a visitor from another non-profit come by to visit us.  Only she wasn't supposed to and it startled us when she came.  Something about the flapping of wings by your head when you aren't expecting anything.  She was a toucan from Tracy Aviary.  Later they had a golden eagle.  I commented I was glad it wasn't that one that "attacked" us.  The last two pictures are of the bird and of Brytten at our table.

And now I'm basically caught up.  Well, except for mentioning the big wind storm we had at the beginning of December that caused some damage to our house and knocked down branches from a couple of trees and caused our neighbor's tree to fall through the fence.  It also caused us to go without power for nearly 36 hours.  But I won't go into that.  I think this post is long enough.