January 3 - February 3

One month in time.  Quite a whirlwind of a month I might add...

Charlotte is officially having her one month open heart surgery anniversary.  We're not necessarily throwing a party or anything but the date has struck me.  It's almost the same time frame in which we were able to see her again after handing her over to the OR nurse.

Here was our first view of her.

And today....well, today my phone won't let me upload a new picture so I'll get you that as soon as I figure out why. 

Thank you for her today, Jesus, and the manner in which you got her to this point.

4 weeks post op

Open Heart Surgery post op 4 weeks.  

Charlotte doesn't even seem like the same baby.  She's a busy, growing, chubby, engaging girl now.  I'm SOOOOOOOOOOOO glad we didn't wait any longer to get her surgery done.

She looks AMAZING.  See????  You can hardly see where some of the smaller chest tubes were!  What a difference a few weeks makes. 

We go in for the first post op appointment with the cardiologist today.  I'll be excited (nervous) as to what her ECHO looks like.  Watching them before was disconcerting.  I can't REALLY tell what's going on other than the big, basic scene but I can tell where chambers are and when they flip the coloring on - there is blue and red.  Prior to surgery, with the coloring 'on', her chambers looked like paintball splatter.  Red and blue all mixed and mashed together.  I'm not a doctor, but I knew that wasn't right.  At her discharge echo one week post op, I watched as they put the colors on.  Red on one side, blue on the other.  THAT'S more like it....I'll be glad to see and hear what her doc has to say.  Hopefully no leaks.  Hopefully the patches are still holding and looking great.  Hopefully the pulmonary hypertension is still going down or is all ready down and in perfect ranges.

The whole arm thing is another issue.  We'll see a vascular surgeon right after the cardiologist and they'll do some more investigating as to the healing of her artery.  I imagine there will be another ultrasound to look at her arm and do some comparison to watch for healing and/or change.

Then it's onto the weekly blood draw.  Charlotte is still on twice daily injections of Lovenox, and while I'm REALLY grateful for the medication, I'd love for her to not need it.  We have to have her levels checked at least once a week, then adjustments are made, if needed, in time for the next week's dosage. This may or may not be a long term issue.  From what I can tell, it's not related in any way to the cardiac issues or Trisomy 21.  Just a 'thing' that showed up. We shall see what that means for down the road.

In the mean time, Charlotte is doing all kind of wonderful baby stuff.  She has biweekly therapy appointments where we make her do all kinds of funky things that I just took for granted with my other kids.  It's a pretty amazing learning experience.  Right now, we're watching her vision (PUN!) because she's mostly looking through things and people.  Some of that may be a sensory issue (does. not. like. noises.) or it may be a vision problem.   We're working our way through all the specialties.  Audiology is later in the month as well.  

Here's a photo shoot during her morning exercise routine.  She gave Riley the BIGGEST smile....lucky guy.  









She's also MOVING.  As in scooching.  (HOW IN THE WORLD DO YOU SPELL THAT???  I tried a few different ways and it wind up looking like I can't spell "school" or that Charlotte is into drinking Scotch.  Which she isn't.)   You know what I mean, right?

This is the scene we woke up to this morning.   Note:  Charlotte starts the night out on the big wedge with her head and body making a straight line down the length of the wedge. It's more of a guideline apparently. :)

Charlotte is perpendicular to her starting lane.

Blankets off and waded at the end of the crib.

Happy as all get out but the legs were a pumpin' like she was in a race.  


The girl is going places...no doubt about that one.  

Happy Feet

Here goes with a zillion pictures...

I have a thing for baby hands and baby feet.  This post is all about the feet.  Kidlet feet are less cute but we LOVE the comparison.  :)

One interesting note about the toes of some people with Trisomy 21 is that they can have a larger gap in the space between their big toe and the next one.  Charlotte has a bit of the gap but it is not as pronounced yet.  Janelle and I were talking about some of the features that Charlotte has that are Down Syndrome markers and when I mentioned this one, her response was fabulous.  "Well, that just means her feet are MADE for flip flops!"  You must know that Janelle is the child you will see running around in 20 degree weather and flip flops.  To her, they are footwear for 365 days a year no matter the climate.  Not. kidding.  She is thrilled to have a sister ready made for her favorite shoes.  :) 

This is Charlotte newly hatched.  Egads - blue.  DARLING as all get out, but blue.  This was always a sign for us if she was having trouble.  Like with eating...she'd start getting dusky blue at the toes and it would creep up.  Yeesh.

She never was super blue in our eyes but that was because of the pulmonary hypertension that was keeping her from congestive heart failure.   Also - we didn't have a good frame of reference.  :)  She looked wonderful because we didn't have anything to compare it to.

This is her getting her anti-bacterial wipe down the morning of surgery right before we left home.  The bad (4:45am) lighting adds to the odd coloring but it's close.  

I remember one of the first things I noticed when I REALLY looked at her in the PICU after getting past seeing just the machines keeping her alive.  It was her toes and thighs. They were sooooo creamy white and the tips of her toes were PINK.  Shockingly pink.  All the sudden I realized how dusky and grey/blueish she had been (which frankly, wasn't as bad as some other kiddos I've seen and know of).

Since the hospital we feel like we have a new baby.  She's wiggly.  She's busy.  She's crying when she's hungry.  She's awake.  She's still pretty pink.  She's gaining weight.  She's GROWING.  What a difference a well sealed off heart makes. 

We lined up the kids the other night and had a hilarious time taking pictures.  Charlotte would. not. hold. her. feet. still.  Everyone got to giggling and some of the blooper pictures showed her feet and legs in one big blur.  It was f.u.n.n.y..




Thank you Jesus for modern medicine and the fact that it's given us a busy, healthy, and happy Charlotte!


I wonder where her feet are going to take all of us?

???

I believe they call it real life.

We are seriously trying to find our groove.  I know the old one is dead and gone but dang it all, if I'm having trouble finding a new one.

I just sent all my kids outside to work for an hour because frankly, their bickering is annoying.  At least I won't hear them outside.  THIS is what you get when you send kids outside in the rain who SO don't want to be sent outside.  My Janelle is very resourceful.  She gets an 'A' for creativity...

School consisted of math, reading and major work on science projects.  Home Economics if you include grocery shopping and spending an obnoxious amount of time on the computer trying to find a good vehicle that you HAVE to purchase really dang soon.  (Van was totaled right before Charlotte's surgery....did I already mention that???)

We're missing our friend, Auntie Jen because she had to go home to her own family and while I'm thrilled to have had her...it makes getting back into life with her and hers on the other side of the stinkin' country all the more sad.  All my kids are whining that she's gone and I'm trying to be patient with them and rejoice in the fact that they loved my friend even if they hadn't met in person before last Friday. 

Even Charlotte has been pouting....



We laughed, cried, played, drank coffee (THANK YOU ALAN!!!) several times a day, played cards, ran some errands, talked, cooked, talked, snuggled baby, talked on Skype with another friend from England - HELLO AMANDA!!!, snuggled big kids, talked some more, traded parenting tips (because since it's not working for us maybe it'll help you :/)  and stayed up waaaaayyyyy to late for my 38 year old self.  It was awesome.  Missed getting to skype another girlfriend, but I guess we HAVE to save something to do for the first time when we get together soon.  (PLEASE, LET IT BE SOON!!)

Her hubby gets a big ol' thumbs up from me and mine in that he sent her to me.  I needed her more than I even realized.  



In heart surgery update news:  Charlotte is doing A.M.A.Z.I.N.G.!!  She's so pink...and starting to find her hungry and loud.  The girl has lungs and will use them when needed....or when she feels like it.  :)  Everyone is more than slightly paranoid when she cries because, honestly, she didn't really do that before.  Weird.  Injections are going fine - lots of little poke marks on her legs, danggit, but she doesn't even squeak when I give her the shot.  Hopefully this isn't a forever thing but we will find out more in a week or so.  At her 1 week post discharge appointment with her pediatrician she'd gained a pound and a half since surgery day.  :)  Incision looks amazing it's a bit surreal looking at it and thinking that only 2 1/2 weeks has past.  In one sense, it seems ages ago; in another, I'm still in the family room waiting to hear how surgery is going. 

I will admit that every. decision. in. our. lives feels really overwhelming right now.  Buy a vehicle.  Schedule tons of drs. appointments.  Remember to give everyone their meds.  Balance checkbook.  Pay bills.  Grocery shop.  Laundry.  Home School.

So - what do I do?

Start planning a kitchen remodel.

I need more coffee....

A Picture is Worth a Thousand Words...

...good thing as I still don't quite have words for the last week and a half.

Here are some photos from Charlotte's surgery.  Nothing can quite prepare you for seeing your child like this but I am thankful for those friends and online support group members who had either posted their pictures or talked me through some of the elements we were going to possibly run into.  I wasn't completely knocked over with the shock of it all.

Here she is all dressed up and ready for surgery....*mother is breathing in and out repeatedly and talking a ton to keep from having a breakdown*

This is our first glimpse of her after surgery in the PICU.  Her nurse was awesome and did a great job in helping us understand all this 'stuff' in the context of what was keeping our itty bitty alive.  

She was sooooooo s t i l l. 

The whole gang rallied around her....

Honestly, the days are all kind of smashed together in my brain so I'm not able to explain which days are which from here on out....but the pics are mostly in chronological order.  

 Not awake yet but off the vent!  She had oxygen for a while to keep her going.  Every morning they did chest x-rays to see how things were looking and by the next day she was needing some help getting her lungs fully functional.  High flow oxygen was ordered along with regular cpap treatments.  The respiratory therapist likened it as a dog hanging his head out the window of a car careening down the highway. tongue out and mouth open.  This air was humidified so her lungs wouldn't dry out so she basically bubbled her way through the next hours.  It was between really funny and really sad watching her.  Her little cheeks would just blow out continually like you'd just popped a balloon. Eating with all that going on was pretty futile, but thankfully it wasn't prolonged for days. 

 Here's a picture of her as they were getting ready to pull out one of her chest tubes.  There were two drain tubes placed to drain excess blood away - one from her heart area and another below her diaphragm.  The one from her heart was done draining sooner than the other so it was the first one out. 

 See the bubbles?  Here's she's trying desperately to get that thumb in her mouth. 

Here's one pictures of the c-pap treatment.  This forced air was another helper in getting her lungs fully inflated. 

 Here she is in the regular pediatric ward.  I can't remember what day....:/  She was only in the PICU one 'extra' day due to the oxygen and x-ray needs.  The wires you see here are EKG leads, oxygen, and the caths that were drainage from the lung area. 

 Would that I would be so cheerful in spite of the circumstances....

She did run into a few little hiccups but not from the cardiac issues.  On Saturday they did her 'discharge' echo and her cardiologist said everything looked great!  We could've gone home on Saturday.

Our older kids might have a future in graffiti....

Here's a little data:  during surgery they put in a couple of 'lines' to measure pressures from her heart.  Don't ask me the nitty gritty details - I don't remember them.  :/  One is an arterial line-put in the artery of her right arm.  The other - a Central Line.  This one goes into the jugular and has three lines that shoot off of it.  VERY ODD LOOKING  There were three ports so that they could administer meds and draw blood without extra pokes.  GREAT except that two of her lines went bad so they had to pull it out a bit early.

She wound up with something going on at the arterial site.  Her arm/hand looked very odd and they were keeping an eye on it from the time they took out the line.  After a few days it was still cold, pale or blueish depending on the moment.  No pulse at the wrist.  (She still hasn't regained it.)  After an ultrasound on her arm and a few consults with some vascular surgeons, it's basically been determined that she either had a blood clot at the site or damage to that artery.  We spent the next few days getting visits every few hours from doctors and working on getting a Heparin dosage that would be good but not BAD.  Heparin is a blood thinner.  You have to dial that one in pretty close.  They had to draw blood every 4 hours for a day then our cardiologist switched it to 6, bless his heart.  She's classified as a 'hard stick' now.  Meaning it's not easy to get a good poke.  Sigh....  It happened that a few times that when they actually got in and were able to collect the blood needed for the test, as it was getting to the lab it would clot, rendering it useless.  My one moment of being close to ticked off was one of these times.  Through all that she now has only about 2 veins left that are usable.  In her scalp.  Ack.  After a few days they'll come back but yeeeesh....

She's home now but her mother has to be a big girl and give her baby injections twice a day.  Charlotte is being way more mature about it than I am.  She is setting quite the example for her brother and sisters who would rather do anything (like math) than get a shot.  :/   This means blood draws at the lab frequently and we may be watching her for a clotting disorder.  I hope not.

We are still working on getting her pain under control.  Hiccups are mean at certain times of the day...

It's felt like a blur and an exhausting race all in one.  I am feeling really grateful to be home.  My brain is still on 'scattered' time and I'm not sure it will settle down any time soon but the relief in having open heart surgery behind us is H.U.G.E..  Everyone in our family feels it. 

Thank you all for your prayers, company, notes, food, chocolate and watching of our older kids during this escapade.  We are amazed at the community of friends, the medical community and God's handiwork in this human body.

Fearfully and wonderfully made indeed.... 

Open Heart Surgery? Check.

Charlotte is out of surgery. We will post more later on some details and thoughts but at the moment I can barely remember my full name so I'm not going to write a whole lot and post it to the Internet to torment me for all time.

As of now, both holes are patched, the PDA is closed and she is settled into the PICU. The doctors and nurses are saying she's doing great and that will help us rest. She is still fully sedated but they will start weaning her off some pain meds to see how her breathing on her own goes. She needs to do some work before they can take her off the vent which is the first step to finish the heart surgery race.

Since I am posting from my phone I can't upload a picture but as soon as I'm near a computer....

Thank you for praying!!!!

(Let the record show, I wore the cute shoes. ;) )

13 Weeks Ago...

I was packing my bag to go to the hospital to have a c-section for the new baby.

I was packing the baby goodies.

I picked out a cute outfit to wear with my RED shoes.  

I packed a Sonlight read aloud from our home schooling 'to do'  list because I had visions of all of us snuggled up with the new baby finishing our weeks' reading.  (bbbbwwwwhhhhaaaaahhhhhaaaaahhhhhaaaaa)

I cooked some meals for the fridge and freezer.

I was feeling confident in our ability to bring in baby number 4 albeit nervous about the actual surgery - boy did I have that backwards.

I was expecting to party in the hospital room.

I was giddy.

I'm not feeling that way so much this time.   

I'm packing a bag to take to the hospital to hand over our youngest child to a surgeon.

I'm packing fuzzy socks and only jammies with snaps all the way up the body because she will have tubes, wires, and major tenderness that will limit what she can wear.

I'm uploading some music to be able to play while in the hospital although I doubt I'll listen to ANY of it.

I'm packing my Kindle to keep from going crazy waiting and watching.  I doubt I'll even open it.

I'm having the kids pick out a goodie each for Charlotte.  Riley will pick one of his little jingle bugs he bought her for Christmas and the girls get to pick out a soft blanket each to send with her.

I'm trying to remember to make some food for my family to eat while I'm at the hospital and not on duty at home.

I'm eating stupid amounts of chocolate to try and distract my mind.  It's NOT working. 

I'm starting a blog where my words, heart and mind will collide.  I hope no one has a teacher pen on them. 

Alan and I have had to have hard conversations with our other kids to prepare them for the best case scenario and the worst.  (LIKE THAT WORKS....)

At 13 weeks of age, almost to the MINUTE, they will start the surgery to mend her heart physically. 

I'm praying like crazy.

Down Syndrome

We're just starting the road here so I'm sure we'll be adding information as needed to our saddlebags but for now, we try to learn one new thing a day.  Some days that not enough...some days it's TOO much.

13 weeks ago I knew basically NOTHING about it.  Even if I'd known tidbits here and there, CONTEXT is an amazing teacher.  Egads.

Things that used to be barely on my radar now send my blood pressure into hyper-drive. Like the word 'retarded' for one.  

What we know now is merely scratching the surface.  If you are interested in facts and ways to either get educated or involved, THIS is a great place to check out.

I'll probably be posting how it interlaces with our family, as Charlotte grows and changes but right now heart surgery has prime real estate in my mind.

This we know and know more fully as each day passes...Charlotte is a blessing.  Charlotte is a gift.  Charlotte is a Hayes.  Charlotte can make her crabby brother get all melty and gentle.  Charlotte can make Janelle reach out.  Charlotte can help Natalie slow down.  Charlotte is.

Thank God for that.

What to Wear...

It's ridiculous but I'm in a conundrum about what to wear to the hospital.  

LIKE THAT MATTERS WHEN WE HAVE TO HAND OVER OUR INFANT TO HAVE THEM OPEN UP HER HEART,  STOP IT, MAKE ALL HER BLOOD GO THROUGH A BY-PASS MACHINE,  AND THEN REPAIR HOLES IN IT!!!!!! 

But still....


Should I wear my new awesome, I'm having a mental crisis, WE CAN DO THIS! pair of shoes?

*Brief interlude:  Yes, we let our kids write on the kitchen floor with Sharpie pens.  Yes, we will be addressing the spelling errors that are now in Sharpie on the kitchen floor.

We're going to rip the whole thing up at some point in the future so it will be all good.

I will not let the kids write with Sharpie on the new kitchen floor.  Mental note:  Say that out loud to said kids in case they think this is now an option for the future as well as the present. *
















Or should I wear my 'I'm going to pace the halls, run around the block and in general wear out the floor so I don't lose my ever lovin' marbles thinking about what's going on behind closed doors' tennis shoes?

I wonder what Stacy or Clinton would say? What do you say? 

13 weeks ago I was packing a different kind of bag and NEVER in a million years would've imagined this.

Oh well.

Surgery Prep

Thursday we went to the hospital to do all our pre-admission testing and paperfiling.  That was fun.  Charlotte had to have several tests done.

Chest X-ray - no pics of that one. 

EKG

Blood draws


It was very surreal holding her while allowing someone to poke, prod, and in general make her scream like we've never heard.  Part of me sat there whispering to her and trying to offer some comfort, praising God that these people knew how to do this kind of stuff and the other part wanted to smack the phlebotomist and run for the van.

Our check-in RN had put numbing cream on the inside of both of Charlotte's elbows but since her veins are pretty flat they weren't able to use that area. That meant the top of the hand.  ACK.  So much for the numbing cream. I wish she'd inherited her daddy's awesome veins.  

I remember getting my IV put in when Charlotte was born and it was more physically painful than any other part of that hospital stay.  Took three nurses, a blown vein in my hand, blood all over the floor and 4 tries to get it in.  I about flipped watching them wiggling the needle around trying to get better flow out of her left hand.  Ugh.  They weren't able to get enough with the one draw so we had to do the other hand as well.  That vein flowed quite a bit better and they were able to get plenty.  I haven't sweat like that since my last Jazzercise class last winter.

I think I'll be biting my lip like this until further notice.  

Once all that trama was past we met with the surgeon, signed paperwork and tried to ignore the list of possibilities.  The surgeon is this big guy and I couldn't help but look at his hands and wonder how in the heck he's going to patch holes in my teeny bitty's heart.  Whatever.  We're praying for him like crazy these days, big hands and all.

After a tour of the facilities we headed for home.  On the way we were rear-ended which seems the perfect way to end that kind of a day.  :/  Our van is now held together with tie-wraps and the 'do not open because you won't get it shut' reminder on the back hatch.  I spent most of Friday on the phone with our insurance agent, claims reps and doctors.  Yee Haw.  Alan took it in and basically, it's totaled.  Fabulous.

So January looks like repair a heart and repair a car.  Never thought I'd say those two things in the same sentence.

 Charlotte is much more mature about this than her mother....

Still working on this...

I remember not loving blogger. I stayed up 'till one thirty on NYE trying to get it set up. At my age, I should've know better. Oh well. I'll be working on it as I can but wanted to get it going.

As of today, we are less than 48 hours away from open heart surgery for our nine and a half pound bundle of wonderful. This will be where my mind and heart dump the emotions. I hope it's not too ugly.

On one hand we are amazed and fascinated at the ability of modern medicine to repair the body. Our older kids are doing Human Anatomy and Physiology this year and boy howdy, do we have context. I've been joking with their science teacher that by the time they get to the cardio-vascular system she could go on vacation for a bit and turn things over to R, J, and N. She knows better though. J is also doing her science fair project on Down Syndrome as well. Home schooling and life collide. ;).

The facts are stark: Charlotte has an atrial and ventricle septal defect. AVSD. Also a PDA but I haven't researched that one much. In laymen's terms it's two holes in the inner walls of her heart. All four chambers are affected. One thing that is a blessing and a curse is that she has pulmonary hypertension. High blood pressure in the lungs. Blessing is that it is keeping her congestive heart failure at bay. Curse - it is doing damage to her lungs. The lungs are sponges and hers are filling more with blood than oxygen. Thus getting to have surgery earlier rather than later. Surgery has a 95% success rate. I will admit to being more than distracted by that other 5%.

Our olders are doing okay. Some days. We all know this isn't an optional surgery for Charlotte. Some days there are quite a few tears over the what ifs but we're learning a very big lesson in 'one day at a time'. I will say that parenting the regular stuff while having a medically fragile baby is a balancing class I'm currently flunking. It looks a bit more like
swinging from one end of a pendulum to the other. We're all a little motion sick
from it. :/

I plan on putting up pictures and making this whole thing more readable but at the moment I'm
posting from my iPhone. Our computers are in the fritz and our
CD with the great pics (that I was doing Christmas presents with...yes a week late) is currently stuck in laptop number one that won't even turn on. Grrrrr....So for now it's the stripped down version.

The Short Version

There isn't one.  We had a different life a while back.  You can read about it here if you are interested.  For those who want to just jump into the present here is the run down. 

Our zoo consists of my hubby Mr. Amazing, who not only gets more handsome with the years, he makes me really fabulous coffee every. single. morning..  *Just for the record - we are coffee snobs.  You'll read about that I'm sure because it does come up in every day conversation.*  Then there's yours truly who does lots of little things to stay sane and is really a minimalist at heart.  Our knight in shining camo, Riley, is 14 and a half and will skin and disect anything he finds dead, but to keep balance in his life, is a fabulous ballroom dancer.  Janelle is 11 and a vorocious reader.  The girlie just read Jane Eyre, for goodness sakes.  Natalie is our 'Ramona' and keeps us in stitches.  She's turning 10 this year and I can hardly believe it.  Charlotte is our newest zoolet at 12 weeks 'ish' and wonderful.  We're all enjoying the baby party in the house. 

Now, we also have a little thing in our laps these days called Down Syndrome.  We didn't know Charlotte had Down Syndrome until a very quiet pediatric examination about an hour or two after she was born.  I think my heart stopped at the words, "Has anyone mentioned that Charlotte may have Down Syndrome?".  Almost 13 weeks later it's still trying to find a rhythm.  Along with that has come a heart defect that will be getting Charlotte the 'door number 1' prize of open heart surgery next week.  Honestly, heart defect has been much more on my radar than Trisomy 21, but it's there. 

And that is why I'm blogging here now.  Finding a life pattern has been challenging after 5 years of living internationally and then we were blessed to add a new baby which will throw a wonderful wrench into any pattern you might have.  With the added facet of Down Syndrome, this pattern is looking more like a stained glass window every day.  I used to think stained glass windows too chaotic and choppy.  Now I'm realizing even in that, they have great beauty. 

So will we. 

I hope.