Saturday, November 23, 2013

Updates and Stuff

I had a follow-up appointment with our cardiologist yesterday.  I thought it would maybe take an hour.  Ha!  The sonographer was SOOOOO SLLLLOOOOOWWWW.  I'm pretty sure I fell asleep a few times.  But I can't begrudge them getting all the information they can possibly get right?

So everything is pretty much the same:  still pulmonary atresia with complicating sinusoids and fistula.  Still fluid around the heart but still a small amount -- it hasn't increased (yay!).  Still a boy.  Still cute and wiggly and wants to live!  One development that is causing some additional concern is that there appears to be some shrinkage (maybe atrophy?) of the aorta and the left ventricle.  Not good.  If that is indeed the case, there will be no option BUT transplant.  But because the muscle of the right ventricle is so thick and stiff, it may just be pushing into the aorta and left ventricle and causing the appearance of shrinkage.  Since there's nothing we can do about it and you can't really tell for sure at this point, it's kind've a moot point at the moment.

We spent some time going over the timeline for what's going to happen though and that was very helpful.  Around Christmas Chopper and I will go and tour Children's Medical -- mainly their cardiovascular ICU because that's where the baby will be admitted.  They have a regular NICU but his heart condition is severe enough that he has priority for the cardio unit.  We'll meet with the cardiac surgeon and the a cardiac interventionalist and have an echocardiogram done on site so that they have access to their own information when the time comes for reference.  Then I'll have one more echo done with Dr. Gibbin again just to measure fluid levels, etc.

So on the day of delivery!!!!  I will be induced in the morning during the week.  After he's born we'll have a few minutes to hold him, give him a name and a blessing, and then he'll be taken to the ICU.  He'll have an IV inserted (do they make them that small?) and an umbilical line where he'll recieve prostaglandins.  These will keep his ductal arch open and allow some blood flow to the lungs since it won't be coming through the heart.  After those are in place, he will be transferred to Children's Medical (they don't have labor and delivery there) and admitted to the cardiac ICU where they will do an echocardiogram and a catheterization and then we'll make decisions about surgery/transplant/etc.  After I'm discharged I will MOVE over to Children's and live with him!  This is the part I'm worried about -- I'm going to try to breastfeed.  Or at least pump.  My cardiologist says that there is more progress in babies who not only receive breast milk but receive that skin to skin contact that breastfeeding provides.  And we want to give him every chance in the world!!!

And that's it.  I'm 26+ weeks and 158 pounds (that's my 30 lb. mark) and definitely pregnant.  But I'm excited about the holidays and then afterwards it will be preparing the family for complete upheaval of our lives.  I'm very very worried about it.

On a slightly upbeat note -- Megan had a Thanksgiving reenactment yesterday at school that I and the kids attended.  Thank goodness I went loaded with snacks!!!  It's wasn't participatory, it was a demonstration and poor Abby had been hyped up to go to Megan's school and have a Thanksgiving snack.  I'm really grateful that she is a forgiving and resilient child and doesn't get upset when things don't go the way she expects.  Because Megan certainly does.

So either I'm getting worse at taking pictures or my camera is suffering from too many kids handling it.  So even though they're blurry you get a sense of it.

Yeah, not happy.  At least in the beginning.  There were apparently a lot of things wrong with what was going on but she did perk up when things got rolling.

The demonstration was basically of what they have learned about the pilgrims and the Native Americans and it was super cute.  The Native Americans helped teach the pilgrims about growing crops so they could survive.  They taught them that when you plan seeds in dirt (sunflower seeds in pudding) you add fish (goldfish) for fertilizer and then cover it all with dirt (oreo cookies).

When they were explaining it a lot of the kids were saying "ewww gross" but every single snack got eaten!!  I guess pudding and goldfish works out ok!

I love Megan's little hat.  Her teacher made them all for the class and they are adorable.  It was a great little lesson that we might try again at home next week so that Abby can participate.

Now Megan has a whole week off of school!!  I feel like I should do some fun things with the girls but I also am hosting 4 families on Thanksgiving day and I've got a lot of cleaning to do as well.  We'll see how it goes!!

Thursday, November 21, 2013


So I love the movie The King's Speech.  Yes, it's rated R (for a 10 second specific reason that has nothing to do with skin or violence), it's Colin Firth and Helena Bonham-Carter and it's FANTASTIC.  The rated R part in the middle is when Colin Firth's character (is he a prince at that point or the king?  I think he's the king by then) gets so FRUSTRATED with himself and his tutoring in speech  and his therapist encourages him to let go and say the f-word.  The real one.  And he does -- about 15 times in a row.

And some days I can so sympathize.  

And it occured to me just how many f-words there are that seem to express those negative emotions: frazzled, frantic, frayed, finished, flamboozled, frenetic, fractured, frustrated.

I feel FRAZZLED because William is a 16 month old boy who loves to be outside, runs away from me when he can, and FIGHTS me if I try to contain him.  It's rather tiring.

I feel FRUSTRATED because the last quilt I'm doing for commission is not coming together well and I've been trouble shooting for days now when I should be getting things done.

I feel FRACTURED because it seems there are so many things that need to be taken care of: kids, school work, Relief Society, visiting teaching, Christmas projects, Thanksgiving dinner, clean the house, etc. when what I really want to do is sit down, read a very good book, and fall asleep doing so.

I feel FRAYED when the girls ask me the same question over and over and over again because the answer is no.  No.  NO!!!

I probably shouldn't post this entry because it's pretty negative right?  I'm tired -- can you tell?  I think I'm going to take a nap.

Tuesday, November 19, 2013

Emotional Roller Coaster

It's funny the things that make me emotional and the things I don't care about at all.  Take baby clothes for instance.  I love them, primarily because they're little and cute, but I don't get too attached.  I have been in a purging mood and one of the things I decided to do was get rid of all my girl clothes.  I know, I know -- is this the end of girls in our family?  I actually don't know.  But the urge to purge is stronger than the urge to be prepared.  I guess we've had so many hand-me-downs up to now that I know if a girl were to come along again it wouldn't be an issue.  

But all these boxes and boxes of clothes are going into 2 piles:  1 for donation to whoever wants them (the advantage of being in a ward full of babies and pregnant women!) and 1 for keeping sort've.  That is one diaper box in which I've put mostly outfits that I've made and I plan to give to my sisters-in-law if they want them.  If not, at that point I'll donate them too!  The only thing I will keep for sure is the girls' blessing gown -- of course!  But the point of all this is that it's been fun to look at things and remember how cute the girls were, etc. but I have no desire to save, create a quilt, or frame ANY of these outfits.

On the flip side, I don't have a lot of time these days to dwell on the emotional side of this pregnancy.  I actually am really glad because it really has been more of a "regular" pregnancy for me and I am actually liking that fact.  But quiet moments are pretty dangerous -- in the shower (if the kids are still sleeping) or when I'm in the car by myself (which happens once in a blue moon).  

Funny story that illustrates how close to the surface my emotions are though -- on Saturday I went to the church to help with a dual ward service project called Operation Christmas Child (great project by the way!).  No kids so I took advantage and was listening to the radio.  A commercial for the next episode of The Amazing Race comes on.  That's a reality show where teams of two race around the world literally and complete challenges, etc.  The winning team wins 1 million dollars.  Chopper and I fell in love with the show in it's early seasons but haven't really watched it these last few years but have always wanted to be contestants.  Alas, children don't really make that possible at this point.  Anyway, I'm sitting in the car and my mind starts going -- maybe after Aaron is born we can get back in shape and try out for the show and maybe they'll take us because we'll need the money for his third heart surgery -- and I can see in my mind's eye Chopper and I crossing the finish line first and I just burst into tears.  After which I start laughing because seriously?  I'm crying over winning The Amazing Race.  Mentally.

It was the most random, unnecessary display of emotion because it's never going to happen.

But lately, that's how things work around here.  It's a roller coaster.  A tiring one.

Tuesday, November 12, 2013

Making Progress

I'm in a good spot.  One where things are going well generally speaking and where my days are more good than bad.  I think that it's partly because in many ways, we're making progress with various aspects of life and it feels good.

I finally had my first doctor's appointment with my new OB/GYN yesterday.  I like her.  She's a maternal-fetal medicine doctor, in other words "high risk".  But fortunately for me she seems very down-to-earth and realizes that the pregnancy is not high risk, just the baby.  I still need to stick with her because my regular OB doesn't have privileges at the hospital that I need to be at for Aaron but I think she'll let me have as normal a labor and delivery as I can under the circumstances and I'm really grateful for that.
And now that that initial appointment is out of the way I feel like the medical side of things is taken care of as much as it can be and I can focus on the personal side of things -- talking to a mom who has gone through this, deciding whether or not to breastfeed (BIG decision because I've always done it exclusively for a year!), working out the routine of our lives and getting meals and activities and things ready to ease the stress on the kids.  That kind of stuff.

Chopper is building a dollhouse for the girls.  And I'm furnishing and decorating!!  And we're both ridiculously excited.  As in playing Christmas music, can barely keep it a secret excited!  It is so fun to prepare something that we're sure they'll love.  I don't have any pictures yet (I think Chopper has a few on his phone) but I'll post some soon of the process.  It's awesome!!

Today was cold and windy -- the coldest day of the season so far.  When I took Megan to school I dropped her off rather than walk her in.  I looked back into my mirror to watch her walk in and a little girl was hugging her.  And then Megan showed her Andy the puppy (her class mascot) that she had for the night and they walked in to the school together.  And Megan was smiling.  And it makes me proud and happy and emotional all at the same time to see her happy and social and independent.  I get so anxious over her, ironic considering that I think her issues stem from anxiety!  I love seeing her grow and progress.

I finally finished a quilt!!  I've had this pair "commissioned" by a friend of mine and the going has been slow.  It's so far from perfect but has turned out well and I'm happy with it.  And now I can finish the other one and focus on Christmas presents.  It feels good to have accomplished something that's been hanging over my head.

Yes, that fabric is red flames.  It's hilarious and I hope my friend's son loves it!!

So life is good.   

Thursday, November 7, 2013

Short and Sweet

I don't know if I can write this to reflect how funny it was but I'll certainly try.

See this picture?
I'm standing in between my bed and the full-length mirror in my room right?
Today while I was in my room on the phone with my mom, William pulled in a small chair and dragged it over to the mirror, climbed up, and started screaming.
When I walked over to check I just started laughing.
He was trying to climb on the bed.  But he's facing the mirror.  Get it?  He couldn't figure out why he couldn't get on the bed!  I'm sorry but it was really funny.

As for me -- 24 weeks pregnant and I am 152 pounds.  Feeling heavy, slow, and tired.  So tired.  But doing good.

Tuesday, November 5, 2013


Ok so I'm not a huge believer in luck but I am a big believer in blessings.  I just have to post this briefly because yesterday was such a fantastic day.  Chopper says we should have taken advantage of how good it was and bought a lottery ticket.  Then he said it was probably so good because I went to bed at 9 p.m. the night before and actually felt rested.  He might have a very good point there.  Last night I went to bed at 10:30 and I'm wiped out today!!  Anyway -- the several, several highlights of my day:

1.  William not having a full blown hernia and not having to have surgery (of course)
2.  Getting my room and half of the living room clean (don't laugh -- that is a HUGE deal and now I have at least one tranquilly organized space to recover my sanity in)
3.  Getting a 30% off AND a $5 off coupon in the mail that I can use simultaneously at Kohls to buy Megan pants
4.  I ask Megan to please do something before dinner.  She obeys and then says to me: "mommy, I'm always going to do what you say!"  I know, it will last until -- well it lasted until dinner but it sure was good to hear!
5.  At dinner I tried a new recipe.  Chopper loved it and Megan said she loved it and both girls ate it all!
6.  After dinner and a very rowdy Family Home Evening Abby crawled on top of me and said "you're an awesome mommy!!"
7.  My pediatrician called to discuss the urologist results (ok to celebrate with me) and also informed me that I won their Facebook drawing -- a $50 gift card!!  

Seriously!!  It was just a really good day!

Monday, November 4, 2013


First of all, great news -- William does not have a hernia!!!   He does has an opening from his stomach to his testicle and he does have fluid going back and forth but the urologist that we saw today wants to take a wait and see approach.  It could close up on his own.  So we have a followup appointment in 6 months but no surgery in the meantime!  I'm very excited about this!

This sweet boy (sometimes) woke up at 3 a.m. crying on Friday and I spent from 3-5 alternately comforting him and letting him cry and then he was up again at 6 for the day.  Sort've.  At 8, after dropping Megan off at kindergarten we went home, sat on the couch, and he fell asleep to the sweet sounds of Mulan.  When I went to get a hair cut later that day at a friend's house, he fell asleep on my lap and of course woke up covered in hair.

Saturday I finagled a way to go to the International Quilt Show in Houston!!  By finagled, I mean drove the 4 hours down and 4 hours back in one day and took a friend with me so she could keep me awake!!  I came home exhausted and so sore but it was worth it and yes, I had to post my favorites!
 Mediterranean Colors and Perfumes by Sonia Bardella had a great visual impact but when you got up close you find that the entire quilt is made up of squares that are smaller than 1".  It was incredible.

 Sunrise in Jerusalem by Shulamit Ron

Vine #1 by Caryl Bryer Fallert

Springtime Woodlands by Charlotte Hickman

Paradise Cove by Benita Goodheart

Windswept by Betty Busby

Celestial Splendor by Rachel Wetzler

Seven Deadly Sins by Christine Alexiou

A Girl's Best Friend by Liz Jones

Red Velvet by Lisa Calle

This is the amazing stitching on this quilt.  Overall she used 5000 yards of thread!!!

There was a whole series of cow quilts with fun themes like "Moolin Rouge" and "Moody Blues", etc.  Each one playing on something that you could make cow related.  This one of course, "Red, White, and Moo".  They were a lot of fun.

I am a sucker for Mariner's Compass quilts but there weren't many this year.
 Sun and Sand Linda McGibbon

Does He Make My Butt Look Big? by Kristen Brysen

Friends of Baltimore by Marian Woods

Forest of Life by Kyoko Akaike

Again one part inspiring and one part depressing.  Some day I would love to just have a quilt accepted for entry in the competition!!  I did some shopping of course and am now going to hopefully finish the denim quilts for my friend (which I will never do again) so that I can make a baby quilt for Aaron and work on some more inspiring projects using my fabric stash that is getting way too big.  Ok I take that back, it can never get too big.  I just don't have an excuse to buy fabric if I don't use what I have!!