day four ::

 
Our little lucky charm on St. Patrick's Day! I've never been one to celebrate this holiday, but they sure try to take care of everyone here. For the older kids they had little green baby leprechaun footprints and "pots of gold" periodically spread throughout the 3rd floor for a little treasure hunt and made rainbow crafts. It's pretty neat how much they try and create a sense of normalcy for the children who are here. We even had to sneak a little green bow on Leighton so she wouldn't get pinched. 

Leighton had an okay day.  We did get her first smiles so can tell she's starting to feel better, hooray! We missed that slobbery grin.  But she's struggling to eat and loosing weight.  Her admittance weight was 8.4 K and was down to 7.82.  We're working on getting her to eat [and go potty] :: and for the first time we have a written order of how much intake she needs to get.  She has loved to eat in the past (hence the rolly arms :)) so hopefully once she starts to feel better she'll decide to eat better.  We've also had to chase her oxygen saturations a bit.  Since she came out of ICU she's been consistently sat'ing in the high 70's and low 80's, but this afternoon was dipping into the 60's and low 70's.  We've turned her O2 up 3L (liters per minute) and are trying to find her new normal. Hopefully we can figure it out tonight and tomorrow.  She did have an echo and chest xray this morning that both came back good.

Once we figure out her O2, weight gain will be her ticket home! Hopefully in the next few days. :)

day three ::


It's amazing to me how resilient Leighton is!  Today, overall, was a good day.  It started out a little rocky, she had to have her labs drawn [not fun], then re-drawn less than an hour later [really not fun].  She's a hard stick when it comes to blood draws, even when they send their best from the IV team.  So we kind of dread them.  Even more than her blood draws - she hates, HATES taking her tylenol orally.  Kind of ironic since it's probably the easiest [and tastiest] med she takes.  She literally chokes it down, we can't believe how b.a.d. she hates it.  Hopefully she gets used to it because it's the only pain med you go home with! After a waking up at 4am for labs, x-rays, vital checks and yucky tylenol - this little chick was quite frankly not a very happy.  We felt so bad for her! Her little eyes would look at every person that came in her room nervous they'd "do something" to her.  Luckily, kids forgive quickly :)

We're happy that her chest x-ray came back good and the drainage had gone down so we were able to remove her chest tubes [[YAY]] :: that's pretty painful, but she has be oh so much more happy since.  She can move more freely and even tried to "play" a little this afternoon.  We were able to hold her and snuggle on her a little.  It felt good to be able to love on her!  We are seeing such a huge improvement in her disposition and behavior, I can tell she's starting to feel lots better. :)

***
 


[day two] ::

:: look who made her way out of the CICU today? This little sweetheart!!  
 
Leighton had a good day today.  She is awake more often and very alert when she is.  Her little hands have gotten curious and she likes to try and pull her oxygen out of her nose just about every chance she gets.  I have a feeling socks on her hands are in the near future :)  She still has two chest tubes in for drainage, which probably make her pretty uncomfortable, but hopefully they can come out tomorrow sometime.  We're so amazed in the changes we've seen in her disposition and recovery over the last day. What a miracle it is for her to be recovering so well; prayers are being answered. 

Leighton's Surgery [night one]


Leighton had a really good night and has had a good morning so far. We're on top of her pain and she was able to have a bottle this morning so that seemed to help.  After surgery she was on some meds for high blood pressure and other various things, we've been able to wean her off most of those and are getting her off of morphine. We're using oxycodone and tylenol to manage her pain now. She received her first dose of asprin this morning and will continue to take that until her next surgery years down the road. Her mood much better and we've got to see her sweet eyes more today. If all continues to go well, this afternoon we will be able to remove the pace wires from her  right atrium (we've been monitoring pressures since surgery) and her central lines.  Keep it up Leighton, you're such an amazing little fighter!

Surgery Update :: [day one]

Leighton has been beyond amazing today. We checked into the hospital at 6am and her surgery started around 7:30am. She had to stop eating by 3am so we were a little nervous she'd be hungry and crabby, but she was a gem. So smiley and happy. Surgery took about 5 hours, so she did well! She was on bypass for 55 minutes and they did have to stop her heart for 13 minutes while Dr. Kaza (her beyond amazing surgeon) over-sewed her pulmonary artery that is now detatched from her heart. She came off bypass well and even came out of surgery breathing on her own (which isn't always the case) we're proud of our strong little girl!

She's in the CICU (cardiac ICU) recovering now and doing pretty well. Her stats are right where they should be. From 1:00-5:00 she was pretty irritable (rightfully so) and it's taken us until now to get on top of her pain. She had a rough time coming out of anesthesia & I think that's where a lot of her discomfort came from. She moaned and cried pretty continually for the entire 4 hours and there was absolutely nothing we could do to help her. It was heartbreaking. Hopefully she continues to rest tonight so she can heal and the stitches in her heart don't become too stressed.

We again are so grateful for all the love and prayers being sent out way. We have been blessed ...

Glenn Shunt :: Leighton's [second] surgery


This is the best picture I could find explaining the surgery Leighton will have tomorrow.  Ignore the green #3 and #4 :: we're just focusing on the green #1 and #2.

 The superior vena cava is removed from the heart and connected end-to-side to the right pulmonary artery, which is in continuity with the left pulmonary artery. The main pulmonary artery will be separated from the heart and oversewn. 

#1. The lower section of the pulmonary artery (this is where her PA band was placed in November) that should carry oxygen-poor blood into the heart is removed.

#2. Oxygen-poor blood coming back from the top half of the body is diverted directly into the lungs instead of flowing back into the heart before going to the lungs

[I'm pretty sure I could rock Anatomy class now :: at least the heart section ... ]


Leighton had a big day of pre-op yesterday.  We were at the hospital for over 10 hours and the hotel pillow never felt so good when we finally got done.  One of the big procedures she had was heart catheterization.  She did so well.  We used this procedure mainly used to check pressure levels and o2 saturation levels & get a better picture of her heart.  She also had a sedated echo.  She did amazing thru the entire procedure.  Her results basically confirmed things we already knew.  Dr. Gray said as great as everything looked -- it was time for the next step (meaning her Glenn).


Afterwards recovering :: all smiles from this girl :: she's the best patient ever!

We check into the hospital at 6AM tomorrow morning ... thank you everyone so much for all the love, support and prayers.  It means so much.  We will try and keep you posted as soon as we know more!

:: insta- update ::

well overdue! our life captured by my cell phone :)







Leighton's First Surgery

When Leighton was born we knew there was the possibility of her needing to have surgery very early on.  Some baby's with tricuspid atresia need the first surgery, other's don't.  It just depends on how well they do.  She had been thriving, eating well and gaining weight better than we ever imagined.  Just when I thought we were in the "safe zone" and we could forego the first surgery we met with her cardiologist.  It all happened so fast.  We had an appointment with her pediatrician on a Wednesday, her Oxygen saturation levels had gradually gotten higher -- a little too high.  I thought high was good, much better than low, but turns out neither are good.  We met with her cardiologist Monday where he gave us her surgery packet and told us to head to SLC for all of her pre-op work-up the next day to prep her for surgery on Wednesday.  [like I said ... it all happened QUICK] With her heart defect, the high saturation levels meant her lungs were essentially being "flooded" with blood to oxygenate.  She was faring just fine, but in order to protect her lungs we needed to put a "band" on her Pulmonary artery to restrict the blood flow, lowering her o2 saturations.

Leighton was first on the docket Wednesday morning.  In a way, I'm glad it all happened so fast that I didn't have time to think (or overthink) things.  Her pre-op day was a zoo, so chaotic and busy.  She was an angel.  Best baby ever.  The morning of her surgery she did amazingly well also.  She had to be admitted on an empty stomach, I was so nervous she'd be cranky because of the hunger (especially since she ate very little the day before ... again, tests & echo's were done on an empty stomach)  but it didn't even seem to bother her.  We did her paperwork etc. and then had a mini tour of the area.  That's where we had to hand over my precious six week old baby.  Her anesthesiologist scooped her out of my arms and told us to give her hugs and kisses and he'd take good care of her.  I believed him.  I'm not sure what quality he possessed, but if you have to pass your baby off to anyone - he's the guy to do it with. Dr. Mulroy: amazing guy.  Even the nurses post-op said he took extra special care of our girl. It was the hardest thing I've had to do, ever.  What a long four hours.  They give you a pager and tell you to leave if you can.  Get some breakfast (yeah right). and try to keep your sanity.  Our nurse called the waiting room from the OR periodically to let us know how great Leighton was doing.  Finally, after four long hours, Leighton's amazing surgeon, Dr. Kaza, came and found us in the waiting room to tell us he had finished and she had done so well.  20 minutes later, I got to go and meet her in her room in the ICU.  I'll never forget that moment, I'm not sure what I expected, but she looked amazingly well.  I could see where her chest had been doused with a layer of iodine, giving her torso a yellow-ish tint, and a thin incision on her chest - very neatly done and one drain tube. She was still just as chubby  as when I handed her over.  Her eyes were glazed over and groggy as she "sucked" on a phantom binky for comfort. She moaned a bit here and there in discomfort. I could tell she recognized my voice when I came in the room and wanted nothing more to scoop her up and love on her. That sweet babe. I learned quickly that her entire body ached (naturally).  The only form of comfort I could give her was to stroke her forehead (the only place that probably didn't hurt).  It quickly became her solace over the next few days when she needed some "love" but I couldn't hold her.  Leighton's recovery went remarkably well.  The first 24 hours post-op they say is really critical.  That's when we learned of her extreme sensitivity to morphine.  In the ICU, from 7-8 morning and night - parents have to leave for an hour.  It's mandatory.  That's when there's a shift change and it gets dr's and nurses thru faster.  We had just gotten back from our mandatory "evacuation" when we heard Leighton's nurse calling for the other nurses help.  After quickly tracking down another nurse we quickly found that her O2 saturations were at an extreme low.  She had been sat'ing in the mid 80's and was down into the 20's and dropping quick.  Her latest dose of morphine was causing her to stop breathing.  We quickly became the "popular" room in the ICU and were flooded with additional nurses, dr's and attendees. They had to bag her and begin to manually breathe for her.  I'll never forget watching them squeeze that plastic bulb over and over again to breathe life back into our little girl.There was talk of having to intubate her, but after a dose of medicine to reverse her morphine - she started to gradually gain her breath back.  She likes to hold her breath periodically, and was having a really hard time coming back from each "episode" of that.  The first night was horrible.  After our scare with morphine, she got a half a dose and then was strictly on Tylenol to help manage her pain.  [that's right, my girl is a rockstar.] By the next day she was on her way up.  She looked much better, was breathing better.  Her saturations and heart rate were holding steady.  That night (night #2) we were transferred out of the ICU to a private room on the surgical floor.  That's where I got to hold her for the first time (YAY) and feed her a bottle. Most amazing feeling ever. The next few days she continued to recover amazingly well.  I'm still amazed at her ability.  What an amazing little girl, so strong and resilient.  Surgery happened on a Wednesday (November 14th) and by Sunday (18th) afternoon we were on our way home.  Just in time for her very first Thanksgiving. Oxygen free, tube free.  Just our sweet baby girl, what a fighter. We have been so blessed.

 
  
 
  
 

 
 

:: halloween ::


[trick.or.treat] smell our feet!! we had fun doing some Halloween crafts this year! Jackobi loved making "Candy Corn" feet :)


Leighton's [first] Halloween!! she's such a sweetie.  She was really too tiny for any of the costumes (and the ones that I could find small enough in good ol' Rupert were not very cute) :: so we decided she would be a pumpkin.  Cutest pumpkin I ever did see!!



 
Jackobi and Kashton loved [LOVED] trick or treating this year!! Kashton caught on first :: Jackobi stayed at Grandma and Grandpa's with Leighton and me while Grandpa and Nate took Kash from house to house.  It didn't take him long to decide that free candy in his bucket was a pretty cool thing!  He would profusely say 'thank you, thank you' even as he'd walk down the drive to the next house.  Not long after Kashton got back from "round one" of trick-or-treating, Jackobi saw his loot and decided she was game too! She loved it and overall it was such a fun Halloween! My favorite yet!

Kashton beyond hated his lion costume at first ... but once free candy became involved, decided he loved it!

Part of Jackobi's dance class in their Halloween costumes :: some of her best buddies!  Evie, Presley, Peyton and Hadley!

The rest of our Halloween pictures are on my desktop at home :: I'll have to update this post later! Stay tuned!





little leighton






 
 our [sweet] Leighton clare::
just ten days old.
cannot even begin to describe
 the {love} we have for her.
 
[check out that dark hair!]
I had forgotten how much & dark it was!