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Pretty Days

We've been enjoying unseasonably warm temperatures here (not that I'm complaining one bit) and I find myself outside with Parker and Caroline as much as possible.  We recently went to the Virginia Living Museum after an unpleasant Doctor's appointment.

Thanksgiving was uneventful.  It turns out that I'm a Scrooge when it comes to Thanksgiving festivities all together.  It's not a "church" holiday.  And I believe we should all be thankful more than one designated day a year... I know I am.  So, I sucked it up and made a larger than normal meal and watched the Macy's parade on TV with only a small chip on my shoulder.  Americans don't need any excuses to eat more calories, and to "celebrate" the beginning of the end for an entire population of Native people isn't exactly something I'll cherish in teaching my children.  Matthew put up with me, saying I was like his Dad (sorry Papa Keith)...I think he was just happy he got pumpkin pie.  Sorry I don't have pictures of the spread, or the kids for Thanksgiving.  My phone didn't do any justice to the cuteness we had going on. 

We go Monday morning to see the cardiologist.  Even Parker gets an ECHO.  We don't expect to find anything.  I just think for my sanity, I'd like to be sure he was heart healthy.  It's too soon to be talking about the Fontan for Caroline, so hopefully we'll have a very generic check up with nothing new going on.  She's gaining weight bit by bit since her being hospitalized last.  We've seen a nutritionist to be sure we don't fall off the curve, but she's doing good for a heart baby.

Update on the Little Miss

Caroline was admitted to Portsmouth Naval Tuesday afternoon with a yucky stomach bug. Parker had it first, and 3 days later (when, of course we considered ourselves "in the clear") she starts throwing up. After about 8 hours of being able to keep nothing down, she became a little lethargic...which scared me. So I start paging doctors. Her Cardiologist said to bring her in, and to the ER we came. No one could start an IV on the Princess, (and I would only let them try twice)...not even the PICU nurses. So we went the slower, less intrusive route of trial and error. I still can't believe we're at the hospital, admitted, and as of this point (having already spent the night) still unsure of when they'll let us escape. For a stomach flu?! Yes. And I'd better get used to it. HLHS is no joke.

One year...no way.

"Out of suffering have emerged the strongest souls; the most massive characters are seared with scars."  Khalil Gibran


The 14th of September marks one year since we found out about the special heart Caroline was to be born with.  I remember the day well.  The day that my fight began.  It has been an eventful few months in the CHD community, and as I have watched the ebb and flow of these extraordinary creatures, I once again stand in awe of how strong they truly are.  There are babies fighting for their lives as I type this.  As I type this in my comfy home, down the hall from my sleeping half hearted monster and her brother, there are parents praying for more time with their little ones.  I realize the obstacles that Caroline has overcome are significant.  I am constantly reminded of how fortunate we are. 

If I could go back in time and write myself a little note, it would go something like this: 

Relax.  Hold your husband's hand.  Have HOPE.  Don't believe everything you read on the Internet.  Every baby is different, so is every heart.  Listen to your Doctor, and then go get a second opinion. 

Parker is 3!

I am the world's worst procrastinator.  I really am trying to get better, but it just seems like every little thing is against me getting things done.  I purchased these cool Mickey Mouse invitations for Parker's 3rd Birthday this year.  For the first time in his short life, we are at a place where he can have other kids over for a party, so I wanted to have a "theme" and do it right.  Ha!  I have 2 full packages of invites...unused.  Anyone need them?  Anyway, dispite my epic fail, we had a great party.  Icing Smiles is a not for profit organization that ensures children with serious medical conditions (and their siblings) get a special cake for their occasion.  Through Icing Smiles, we recieved a fantastic Mickey Mouse Clubhouse cake from a small company here in Chesapeake called Cakes by Angelique.  She was great, and I'm sure we'll be throwing business her way in the near future.  Parker had 4 friends over and Aunt Brette spent the day jockeying small children around to keep them busy.  Parker has seen Yo Gabba Gabba once in his life (and quite frankly, that was enough) but he chose the green "monster guy" for his pinata.  Looking back, maybe it wasn't such a great idea to give a pre-schooler a baseball bat and have him wack something until candy came out...  But that being said, he had a great time playing with his friends and he really enjoyed the spotlight of his special day. 

This is another smartphone test. Blogger has changed how I post (again).

Sorry.

Little Miss Caroline had her post Glenn check up at our new cardiologist's office on the 20th of July. We were forced to wait as long as we did because Tricare is so on top of their game. Before this appointment, we were introduced to our new pediatrician (and PCM) who I have deemed unfit for all. She is a whole new story...and I won't be sidetracked again. So Dr. Carr, the cardiologist. I arrived at the appointment overly prepared, defensive, and on edge. My full intention was to ask for a referral out to the Children's Hospital of the Kings Daughters. He turned out very knowledgeable, straightforward, and a bit intense. Just how I like em'. The visit went smoothly, with Parker playing with toys and enjoying young intern conversations. Caroline was in an incredibly good mood (which means she'll scream like a lunatic next time), and even the echo went over without so much as a fuss. We left on a single dose of aspirin daily...and that's it. She really rocked the Glenn. I am so happy that we were fortunate to have a positive outcome. She is blessed. No, we are blessed. Each day is a blessing, and I try really hard to slow down often and kiss on her and just say thank you. Now, here is my chance to apologize for not updating sooner. We have been traveling, sans Dada. Not really the best excuse, because I didn't update when I was at home either. The new house is becoming "home", and Matthew is getting settled into the new job. So, I'm sorry. There. I said it. Now that my head is firmly re-attached to my body, it won't be so long in between posts. Plus, we have so much to catch up on.

Home!

Caroline was released from Children's this morning and is on her way home! Thank you all for your thoughts and prayers and thank you Uncle Harold and Aunt Wynn for taking care of Parker while we were away.

Love,
Matthew and Lauren

Getting settled in

We tried weaning Caroline completely off the oxygen today with no luck.  She really hates the canula, but her sats sit about mid 60's when she's not on it.  Maybe she needs just a little more time.  Of course, she is on diuretics to pull the excess fluid off her lungs.  The problem with that is she's not eating enough to keep her electrolites up.  After all this time, we're playing feeding games again.  Her pain seems to be controlled by tylenol, but we have ready access to narcotics if she needs them.  
Mama is extra sleepy, and the nurse tonight needs to be watched.  I'll post more tomorrow when my brain is functioning a little better.

HKU bound...already?!

When we were here a few weeks ago for Caroline's cath., we spent more time in the CICU than we did for open heart surgery.  Does anyone else think that's just crazy?  They pulled all of her lines this morning in preparation of sending us to the floor, including her chest tubes.  She is still on a tiny bit of oxygen that should be weaned by the end of the day.  Want some bad news?  We're in the smallest HKU room there is, and since they're fielding a lot of CICU kids in the near future, we'll probably have a roomate.  We are on the "A" side, which means we don't have direct access to the bathroom, window, or table.  Even if we were on the "B" side, the room is too small for a couch that I'm used to sleeping on.  Hopefully we won't need to be here long.  Hopefully.

Chunky Monkey

Caroline finally got to eat about an hour ago.  We had to stop her (of course) from eating the whole bottle for fear that she would make herself sick.  Other than that, everything is the same and we are playing the waiting game.  Post Glenn babies usually have a hard time from a bit of swelling and headaches.  She is puffy and her lungs are a little "wet" from all the medicines and from being on bypass.  This causes her to be more oxygen dependant.  She is still on 2 liters of 60% oxygen.  The few extra lasix doses will hopefully help this so we can take that nasal canula off...or she'll do it herself.  She has only needed one half of a dose of morphine a while ago (before she was allowed to eat) to calm her because she was so upset that her sats were bottoming out.  She is sleeping a lot.  I am not complaining because it seems that she is dealing with the trauma this way.  Keep up the prayers that she will continue to progress.

Post Glenn

I listened in this morning for rounds, as always.  It is so nice to be considered "post Glenn".  Caroline was extubated around 8 this morning, and has been pretty grumpy.  I'm not sure that she is even in a lot of pain (who wouldn't be after open heart surgery?) but I know for a fact that she is starving.  No milk until 2 pm, so keep her in your thoughts as she waits it out.  They also took out one of her lines that went directly into her heart, we call it an RA line.  The other one will have to come out and her central arterial line before we can move to the HKU.  Not that I am in a hurry...I hate that place.  

Glenn...check.

We just got into the CICU to see Caroline.  It's scary seeing her hooked up to all that stuff, again.  She'll start waking up in a few hours.  Please pray that she can be successfully extubated soon so she can start eating.  

Update

All done with the surgery.  We just talked to the surgeon, and he seemed pleased with how everything went.  We're stalking the elevators to catch a glimse before they take her into CICU.  

Update

She's off of bypass.  Now we're waiting to talk to Dr. Sinha to see how surgery went.

Update

We just got a page telling us she's on bypass.  Keep up the prayers.

Lunch and a surprise

Matthew and I decided that lunch was a priority after Caroline was taken back for surgery. While we sat eating our lunch, you'll never believe who we saw.  Caroline's surgeon!  I know he has to eat, too.  But I was so shocked to see him in the cafeteria...instead of the OR.  Matthew and I just looked at each other like "are you seeing this?"  Let's hope that some bum isn't in the OR.

And it begins...

The team just took Caroline back for surgery.  She was a little angry because she was hungry, but we sent her off with a smile.  Please pray that all goes as planned.  

The Big Day

After our pre-op appointment yesterday, we were scheduled to be the first case of the day. In the evening, the NP called to say that a newborn needed our timeslot... We are praying for the other family that all goes well.  Now, surgery is scheduled to start around noon.  This is pretty terrible for us (I'm trying hard not to be selfish), because Caroline loves to eat.  She is already hungry and getting increasingly fussy by the minute.  Please pray that we can keep her calm long enough to get her handed off.  

Pre-Glenn Curse

I don't even know where to begin to update everyone on what is going on in the Duncan house.  Yeah, it's a lot.  We moved into our new house in Hampton Roads (that's just a fancy way of saying we live in the Norfolk area, along with the other million Navy families) over the Memorial Day weekend.  Getting settled is harder than it looks, and I find myself still surrounded by boxes full of things I'd never miss if they just got brought out to the garbage bin.  Matthew left Sunday for school in Rhode Island, and we are having a hard time trying to arrange a way for him to get to DC in time for him to see Caroline before surgery.  I have been fighting an uphill battle since Matthew left, and if it could go wrong...you'd better bet that it has.  I had to call a plumber on Sunday night because Parker ran the jogging stroller into the water pipes in the garage.  The water main had to be shut off, and I'm pretty lucky that I was standing nearby when it happened.  Parker thought it was great, he had "mud puddles" to stomp in.  Yesterday, we all went out in the evening for a post dinner walk. When we got home, I realized that I had locked the keys in the house.  So, without my wallet, keys (obviously), phone, diapers, juice...you get the idea, we went begging from the new neighbors.  I found someone that was able to lend us a phone and a phonebook so my very embarassed self could call a locksmith.  At this point, Caroline was really sweaty (not a good thing with a heart baby) and I was entering panic attack mode.  More than once I considered just breaking a window, if that tells you what kind of fun situation it was.  We all survived and the first chance I get, guess who is taking a monster fieldtrip to Home Depot to make some copies...me!  
While the hits just keep on coming, the one constant, looming always somewhere near is Caroline's Glenn.  She and I are leaving before the sun rises on Monday morning to make it to Children's for her pre-op appointment.  I was told that this "appointment" could take up to 8 hours.  After being subjected to every test known to man, Caroline gets to go stay at the Washington D.C. Ronald McDonald house with me.  I am stressing about this because like any home away from home, I have a hard time controlling germs and contact with anything that could potentially get her sick.  Catching something that close to surgery would make her recovery much harder, so I'm planning on being "that Mom" with a full tub of Clorox wipes and a suitcase of our own sheets and blankets.  Please pray that Caroline has no complications, and that we are able to get in and out without any major hiccups.

Congenital Heart Walk

The Congenital Heart Walk took place Sunday, just three days after Caroline was discharged from Children's National.  We were excited to see quite a few nurses and doctors that knew us by name (I'm not so sure that's a good thing...but we'll take it).  Last time I checked, the DC metro area had raised close to $68,000!  This was only the second year, so I was impressed with the results.  Thank you everyone who donated, and thank you even more for the prayers.  Parker was excited to get out and go on an "adventure", although it was hard to explain why we were driving somewhere to go for a walk...

As we continue to wait for word on when Caroline's Glenn will be, moving has taken up most of my worrying energy.  We will be in the new place by Saturday, and Matthew will have exactly one week with us until he reports to Rhode Island for school.  I can only speculate that surgery will take place while he is away...thank you again to those of you who will be watching Parker, again.  The Glenn has been labeled the "drive through" surgery.  Recovery times are much shorter and outcomes are more on the positive side.  That being said, it is still open heart surgery.  And as hard as it was the first time to hand her off, I'm trying not to think about how hard it will be this round.  We really know her now, not that we didn't love her before.  Now she smiles at us, and sings us songs.  She is very much a part of our family.  

Reality Check

As we wind down our first overnight stay in the CICU since Caroline's Norwood, I find myself sitting in the dark, contemplating her future.  Today sucked.  Standing by that hard metal jail cell of a crib tonight after such a traumatic day, looking over my girl with sweat stained hair, I realized that this is our normal.  This is Caroline's reality.  And it's a hard pill for me to swallow.  

CICU

We are settled into a VERY full CICU now. I was told that as a precaution, we will probably spend the night here. We'll see. Hopefully Caroline will remain calm and not have any episodes where they need to give her anymore medication. I'll bet she will be hungry soon, so these people better get ready for Princess Caroline.

All Done.

I just caught a glimse of Caroline as they were taking her upstairs to the CICU. The Doctor said everything went well and she will hopefully be awake and able to eat soon.

Cath. Update

I took Sweet lil' Miss back to the cath. room about 5 minutes ago. She was awake and smiling. Hopefully she will tolerate the all the medicine well and being intubated/extubated again. They prepared us for some time in the CICU, but we'll see.

Pre-Cath. Jitters

Children's decided I had suffered long enough waiting on them to schedule Caroline's heart cath.  Don't get me wrong, I'm not excited about it.  It just took forever.  Each day I grow a little more anxious about handing her over again, even for such a "routine" procedure.  The date is set for Tuesday the 17th. We are fortunate to be the first case of the day, so Chunk won't go very long without eating.  Let's just say she turns into a total "Princess" when she is hungry.  It seems our luck has run out in regards to keeping everyone in this tiny apartment healthy. Parker has just today come down with what we are calling a cold of some sort.  Please pray that Caroline stays healthy.  We need her strong and funk free for her catheterization.  Monday we have lab work...poor baby hasn't had to be stuck with anything since we left the hospital.  I guess you could say I'm nervous about that, too.  There is something unsettling about holding a visibly upset baby while someone causes them pain.  No matter that it truly is for her own good, she is old enough now to understand that Mama makes things better.  I am worried that she won't trust me after this ordeal, or worse, I won't be able to stand her so upset.  I can imagine her little eyes looking at me screaming "why are you letting them do this to me?"  
We have been packing our things in preparation for our Memorial Day move.  All I can say is that we have accumulated a lot of stuff in this tiny space.  Moving just adds another straw to the camels back.  It is necessary, it just may get done half-assed or in a hurry...we have bigger things to deal with.  Depending on the results from the cath., we may be back at Children's for Caroline's Glenn procedure at the very same time we are moving.  This presents more problems, like where we will stay after we are discharged from the hospital.  It is a three hour drive (depending on this wonderful DC traffic) to our new place.  These are all things we never had to think about before because our apartment is so close to CNMC.  
Parker keeps us motivated to get to our new place.  Everyone he meets gets to hear about his new back yard and all the cool things he is going to have to play outside.  I'll have to admit, I'm ready.  And it keeps the light bright at the end of the tunnel.

Bad News First

It seems nowadays, every time I sit down at the computer...I find another reason to cry.  Glutton for punishment?  Maybe.  I can't stop reading about the journeys that others have taken, or babies that have taken that trip to Heaven too soon.  I woke up Monday morning to very sad news.  One of the first HLHS Mothers I found, mainly to ask questions, lost her baby girl Olivia.  She was 4 months old.  One month older than Caroline.  Yesterday was also my Sweetie's 3 month mark.  12 weeks ago, we were preparing to send our daughter away for her first open heart surgery.  I'm not sure why I feel so connected to this family.  I have followed their every move since we found out Caroline would be born with a CHD.  I wanted to be prepared.  I wanted to know EVERYTHING.  Now, I'm not so sure that all this is actually good for me.  I feel like, in watching those success stories, the one's with the not-so-happy endings always stand out.  I can't imagine the pain your soul feels when you hold your dying child.  I don't want to.  Not ever. 

Sometimes I reach over and touch Caroline in the middle of the night.  Just because I can.  I feel blessed to be able to touch my daughter.  I feel blessed that she is a fighter and has stayed with us this long.  Every day I catch myself thinking, "why am I feeling frustrated right now?" "I'll bet Olivia's Mommy would give everything she has to hold her baby".

No news yet on the Glenn.  I think Children's National is trying to torture me in the only way they know how...making me wait.

Happy Anniversary!

Three years ago, I married my husband Matthew.  Yes...it was a Friday.  Our journey has taken some unexpected turns, but I can't imagine having anyone else by my side. 

As it turns out, our Anniversary fell the Monday after Easter this year.  So, for all you picture hounds out there...they're on the way.  We would like to say thank you to Nana Vicki and Papa Keith for the cutest Easter outfits.  And send a shout out to Aunt Brette for driving the wheels off of the Saturn to hang out for the holiday.  We will be much closer soon enough...so we should see more of you.

Anything Else?

Like most heart parents, I have gotten used to the constant appointment schedule and always doing something, with somewhere to go.  Today, I was extra anxious about our Cardiology appointment because Caroline's second surgery (the Glenn) is looming in our not so distant future.  We got two thumbs up for the heart catheterization, to be scheduled as soon as Children's National calls.  As complex as her heart situation is, we have never experienced a glitch in progress or care...until now.  The Cardiologist saw some mild leaking of the tricuspid valve during her echo and perscribed enalapril to correct it.  Please pray that it does it's job, and she has no further decrease in heart function.  Hopefully, after the Glenn she won't need to continue to take the additional medication.  *I don't want any online flogging from other heart Mama's out there thinking "what's the big deal?"  It's a big deal to me. *

The D.C. Duncan's are quickly approaching a move to the Norfolk area.  Because we'll be living in the suburbs, we just got a new car.  Yeah.  I said new.  I'm excited, but my husband would go down and sleep in it at night if he thought he could get away with it.  Matthew has to be in Rhode Island by June 6th, so we have a big month ahead of us.

To give everyone an update on Parker (because so much of the time I feel like he is overlooked in the magnatude of his sister's needs), he is really excited about having a back yard.  That was one of the biggest requirements when we were looking for a house...the yard.  We talk about how amazing it is going to be every night before we go to sleep.  He is almost ready to wear "big boy" underwear.  Potty training is every bit as hard as everyone has made it sound. 

Milestones

Happy 2 months to our sweet baby girl!  I have recognised how much more significant all the milestones seem to be when comparing my healthy boy to Caroline.  I consider also how very blessed we are and I don't take one single smile for granted.  She weighed in this morning at a staggering 4.50 kilos (which is 9 pounds, 15 ounces) so we are excited about almost breaking into the double digits.  Eight weeks ago, we began a journey we had been preparing for...but nothing really prepares you for the fight these little one's are born with.  She has already endured so much and shown us just how precious life is.  I continue to stay cautiously optimistic about her progress, she still has so much to overcome.  We thank everyone for keeping us in your thoughts and prayers.