Ronald McDonald House Fundraiser

I have to give you just a little background info before I can tell you about last night's event.

First - A few years ago, Tom's company moved locations.  During the process they had some leftover computers.  Tom remembered that the Ronald McDonald House (RMH) in DC was in need of some computers.  Since he couldn't get to DC, he called our local house and asked if they wanted them.  They did, so he took them there.  While there, the manager gave him a tour and mentioned that they were going to remodel the kitchen.  Tom said he would be interested in helping them in any way possible.

A year and a half later, he got a call asking if he was still interested in the kitchen renovation.  Of course he said yes.  Tom was invited to bid on the project.  But, it wasn't as simple as a bid sounds.  It was a long process of interviews and meetings.  There was a committee assigned to select a company for the job and that meant a lot of work, and time.  After several months they narrowed it down to three companies.  Then two, then one.  And they selected Tom!  I meant to blog about it weeks ago - but as you know - my blogging time has been scarce lately.

Since then, Tom's been at the RMH several times meeting his subs and going over measurements and plans, etc.  So, last week, Tom came home and told me that the RMH was having a fundraiser the next week and would I like to go.  I said sure.  Then a few days later (Thursday) he calls me and tells me that we have been invited as guests - and they want me to SPEAK about what the RMH means to me.  

Oh, and by the way, it's Monday night and they are expecting about 350 people.   Gulp.

So, I went home and started working on what I would say.  Amazingly, the words just flowed and it practically wrote itself.  

I felt MUCH better once I knew what I was going to say.  

So, on Sunday we had my family over to celebrate Harlie and Cooper's birthdays.  While they were all here, I asked them if I could read my speech to them to practice.  

I read the second sentence (keep in mind the first one was "Hi. My name is Christy".) and started crying.  Oh, no.  That's NOT a good sign!!!!

Everyone laughed (more in support, but also because it was pretty funny and pathetic) including me.  That just made me even MORE nervous.  

It's one thing to live your life - it's another to hear your life in spoken words.  I remember the first time I said that Harlie had Goldenhar Syndrome out loud.  It was hard.  

Anyway, I practiced and tweaked it some.  The impending doom of having to speak in front of so many people pretty much consumed me.  

Finally Monday night arrived and by then, I just wanted to get it over with.  Tom said that they told him that I would be speaking early in the evening, so at least I could get it done and then enjoy the night.  

The event was at a local hotel.  Once we got there (around 6:30) and found his contact, she told us that I would be speaking sometime between 8:46 and 9:00!!!!  Ugh!  The agony!!!  So, we walked around and ate some food (they had a lot of chefs from local restaurants there so you could try their food).  Luckily, it was open bar.  So I had to have a drink.  Or two.

Ronald McDonald "himself" was there, available for photographs.  So, Tom and I went and had our picture taken with him.  It was funny.  I hope they actually send us the picture.  And speaking of pictures, I am so mad I forgot my camera!  Ugh.

Finally, it was time for the speakers.

It says "Tom and Christy" but it was really just me.

My heart was pounding I was SO nervous!!!

I had to go up on stage (with lights!), stand behind a podium and hold a microphone.  Geez.  It was scary!  But, once I started speaking, I was fine.  I really was!  I made sure I didn't speak too fast.  I didn't mispronounce anything.  And I looked up and around the room as I spoke.  I was really proud of myself!!!  

Here's what I said:

Hi. My name is Christy.  

I knew that the Ronald McDonald House helped families.  I just didn’t know it would help mine. 

To give you a little background, we live here in Richmond.  I’m from here, and my husband is from Pittsburgh.  Our experience with the Ronald McDonald House is in Washington, DC.  Our daughter was born there, because we knew she needed specialized care that was not available here in Richmond. 

Harlie turned five years old, yesterday.  A huge milestone, considering during my pregnancy we were told that we had only a 5% chance of ever bringing her home. 

She has a craniofacial syndrome called Goldenhar.  Her abnormalities prevent her from being able to breathe through her mouth and nose, so she is trached.  She’s hearing impaired, she signs and is now learning to talk.  She is a happy, normal little girl with a lot of medical challenges. 

In addition to her craniofacial abnormalities, she also has a series of complicated heart, lung and spinal defects.  She’s had 20 surgeries so far (four of them open heart), and she’s had another 15 procedures under anesthesia.  We don’t know how many more are in her future.  But we do know that she will need a heart transplant at some point - to quote her surgeon - when her heart runs out of gas. 

All in all, she has spent well over a year of her life in the hospital. 

So, we’ve spent a lot of time in a Ronald McDonald House.  It has certainly helped our family financially.  Hotel rooms in Washington, DC aren’t cheap or conveniently located. 

And food is a big issue.  The only option for food at the children’s hospital in DC is their cafeteria.  It’s expensive.  And it gets pretty old after a while.

Because of the Ronald McDonald House we were able to have a healthy breakfast at the house, pack our lunches and snacks and take them to the hospital.  And after a long, tiresome day, we could come home and have a home cooked meal for dinner.  And most nights, cookies or brownies - my favorite.

But aside from all that goodness, the Ronald McDonald House did a lot more for me…

Harlie’s birth was not a joyous occasion, like it should have been.  While we knew about her heart and lung defects, we had no idea she had Goldenhar Syndrome.  When I was discharged from the hospital, I didn’t have to pack up any congratulatory flowers, or balloons.  No one knew what to say, no one knew what to do. 

Our social worker at the children’s hospital told us about the Ronald McDonald House and got us set up there.  We left the hospital and went to Target.  Normally, one of my favorite places in the world, just not that day.  I remember thinking I should be at home in my pajamas holding my little baby.  But, instead I was two hours away, standing in a Target. 

And I had never felt so alone.  And so scared. 

We bought some necessities and headed to our home away from home, the Ronald McDonald House.  I had never been there before.  The manager showed us around, and explained how things worked.  I saw other families there.  I saw thank notes from happy families who had gone home.  And I saw other new moms, who were just like me – confused, scared and in shock.

And then I realized I wasn’t alone.  I wasn’t the only scared mom who had to go through something I didn’t want to go through. 

And that brought an unbelievable amount of comfort to me.  And hope.  And at the time we needed both desperately. 

The next morning I walked into that hospital a new woman.  I had hope.  I loved my daughter and was willing to do whatever I had to do to get her home – where she belonged. 

Now, when we go to the Ronald McDonald House, we take our daughter with us.  The first night we stay together, the three of us.  She plays and explores and has fun.  And then we get up early the next morning to head to the hospital for surgery.  The Ronald McDonald House provides a routine.  It provides comfort – but now not just for me and my husband, but for Harlie, too. 

And for that, we are so, so grateful.  Thank you.

They clapped and I left the stage and went and stood next to Tom.  Immediately people started coming up to us, saying nice things.  They said thank you for sharing your story.  They asked how she was doing now.  And they said that I didn't seem nervous at all up there.  Crazy!  Oh, and two people told me that I just made a lot more money for the RMH.  haha!  

I met two women who lost their sons to complications from congenital heart defects.  One was 10 years old and the other was older than 6.  He died while he was waiting for a new heart.  It was a reminder that even though Harlie is doing great - there are never any guarantees.  Since Harlie's birth, I've met/known so many moms who have lost their children because of heart defects.  It is so sad.  And scary.  As one of the moms said, "they can't save them all."  Truly heartbreaking.  

Another person who came up to us was Ronald McDonald.  And a restaurant owner came up to me and told me that he's had two children born prematurely and he thought he had been through it - until he heard our story.  Then he gave me a hug.  It was really great to receive such warmth and kindness from complete strangers.

I am so glad I had the opportunity to speak.  I think it was a great experience.  And it wasn't nearly as bad as I thought it would be.  

Okay, that's it for now.
Thanks!
~Christy

Arriving in DC RMH

Pictures!

Here's us getting settled in at the new Ronald McDonald House (RMH).  Tom put all our stuff on this dolly and then we headed to Target.  On our way out Harlie grabbed her backpack and communication device.  So cute.  And as we were returning the dolly, she put her backpack on it.  

Bedtime story... Bear goes to the Hospital (or something like that).  Bear crashed his bike and broke his leg.  He got a cast and went home.  She signed doctor, nurse and better.

As of right now, I don't think the story helped prepare her.  She's a little pissed.  But, she'll get better.  The problem with all the books about casts is that the patient crashes and breaks something.  So there was a cause with pain, and the cast makes it better.  But, in her case, she lived just fine and BAM! she comes to the hospital and is put in pain.  Maybe I should write that kind of book.

More pictures in a bit...
~Christy

ENT Update

So, they took her back at 8:39am.  We got here at 6:45am.  First thing this morning, we had a flat tire!  Of all the luck!  There is a big screw in the right front tire.  Let me just say that we did NOT need the added stress.  So, we limped to the hospital and Tom will take care of it when the spinal fusion is underway (since that will take several hours).

She got mad when she saw the hospital bracelet.  At first she held out her hand, but then changed her mind.  We ended up having to put it on her ankle - and that was a struggle.  Then they called us back and she saw the bed and hospital gown.  Oh no.  We're in a bad time period.  Old enough (and experienced enough) to know what's going on, but not old enough to understand why and be able to prepare on her own.

She broke my heart turning away from us in her stroller and shooing us away.  She wanted no love from us this morning.  Then they brought her Versed.  That definitely helped her relax.  But even still when I asked her if she wanted to sit on my lap, she shook her head "no."  Like a knife through my heart I tell you!!

It is now 9:55am and we have spoken with her ENT.  Her ear looked good, except for the large amount of ear wax gooped in her canal.  Wearing a hearing aid 12 hours a day makes things worse in that department.  So, he started us on an ear drop regimen.  Hopefully that will help.  He said her ear drum looked good and there was no sign of infection.  So he did not place another ear tube.  Which is good, I guess.  Her other one had fallen out and without any infections in recent memory (years) there was no reason to replace it.

As far as her jaw goes... he still could not use a rigid bronch.  He said that's not necessarily a reason to keep the trach.  The problem will be if she doesn't have the trach, they will not be able to intubate her for surgeries.  That's disappointing.  Not sure what would/will happen then.  He used a flexible bronch that is fed in through the nose.  He said you can use that for surgeries, but it is tricky.  Not really a concern right now, obviously.

He said that her tongue base and jaw still occluded a little bit during the bronch (when they didn't lift her jaw up out of her airway).  So, that's unfortunate.  But he said that a bronch is so subjective for her situation.  The only way to see if she can be decannulated is to have a sleep study.  She would be inpatient here, and while she's sleeping they would cap her trach and see what happens.  She does fine while awake, but sleeping could be another matter.  :(  So, we will plan to do that sometime this summer.  He said that her trachea itself looks great and healthy so if we can just keep her jaw out of the way, we'd be home free.

I am certainly disappointed overall.  I really thought that he would be able to see a positive difference from the last bronch.  But he said that it was only slightly better than the previous one.  Her jaw was just so severe at birth.  Ugh.

He said that since she doesn't have any chronic lung issues (infections, etc.) that he would decannulate her whenever she was ready - no matter the season.  So, that's good.  So, I guess we'll just get that scheduled at some point and go from there.

Moving on...

Earlier when waiting to be taken back to the OR, her ortho surgeon came to talk to us.  She said she might consider fixing the area higher up on her spine (kyphosis scoliosis) - the part that bulges out.  But, she needs to see how long she's in there and after fixing the bottom part, she needs to get x-rays to see how it affects the bulging (kyphosis) part.  They said they would call us to let us know what she decides because if she continues on, it will add another hour to her surgery time.

The negative to fusing the upper part today is that it will no longer have any growth potential.  So, that would mean that two areas of her spine would be fused and not grow.  But, she said she can't be certain that it would have grown normally anyway.  The areas are abnormal in nature from the get-go - who's to say it has any "normal" growth possible?  And any growth she does have will just keep it going more crooked.

In situations like this - I just try to not think about it and put it in their hands to make the best decision for her.  Not that I had a choice, really.  It's a good thing I was never a controlling person before Harlie came along.

So now we wait.

I wanted to show you pictures of the Ronald McDonald House and of Harlie in her hospital gown.  But, we forgot our USB cord to upload the photos from the camera!  Ugh.  So, we'll have to see what we can do about that.  I can't live all week without showing you pictures!

Oh, and during our wait to go back to the OR, we met with both anesthesiologists.  The ortho doc was pretty funny.  He said we had no idea how much planning and time has gone into preparing for this surgery.  He said he knows her history intimately and the amount of e-mails were crazy.  I told him now he knows what our daily life is like!!!  Try throwing two boys into the mix and BAM! you go crazy.  And then you want a Pug puppy.

It's now 10:36 and I just heard from Tom that the tire is plugged and it only cost $17.  We were nervous that we were doing some damage to the tire driving on it to get here.  So, hopefully that will last us a while.

Okay, I will update you more later.  Thank you for all your comments, messages, texts, etc. of support and encouragement.  I can't tell you how much your outpouring of love for us makes us feel during hard times like these.  While my heart breaks in some places, it swells full in others.  Thank you for that!

xo,
~Christy

In DC and ready for tomorrow.

Well, I didn't get to blog like I wanted.  Nothing new there.  We are all settled in at the DC Ronald McDonald House now.  That seemed to take forever.  Tomorrow is going to be a long day, and I can already tell that I'm not going to get much sleep.  I forgot to pack Harlie's feeding pump so she can two ounces of Pedialyte per hour through the night.  Ugh!  The docs want her to be well hydrated before surgery.  It is much easier to get into veins that are hydrated.  So, I guess I'm going to have to get up a few times to bolus her some fluids.  Darn it.

The RMH here is super nice.  It is a brand new building and is like a hotel (versus a house like the old one).  I think it will make a difference in how we feel coming "home" each night.  When you have a comfortable place to go after a stressful day, it's so appreciated!

So, I'll just tell you about our nutrition appointment really quick.  We went on Friday.  They said she looks so great.  We started calorie boosting a few months ago - in December, I think (because she lost a pound).  So, they wanted her to gain 5 grams per day.  She gained 15 grams per day!!!!  Wow!  Well, I could tell she was putting on some good weight.  So, about a month ago I backed off on how much we were boosting her food.  It's a good thing, huh?

She now weighs 34 pounds and she is 38 inches tall.  That puts her in the 25th to 50th percentile for weight and 10th for height.  Wow!  She has come a long way.

Well, I'm going to wrap this up for now.  Tomorrow is going to be a long day.  We have to be there at 6:30am.  I'll try to catch up on my blogging while we are waiting.  And waiting.  And waiting some more.

Thanks!
~Christy

Ronald McDonald House and THE HARLIE CREW

I was so sleepy the other night, that I didn't finish telling you everything I wanted to.

Some potentially exciting news!  A while back Tom contacted the local Ronald McDonald House about donating some older work computers.  Of course they spoke about how we stay at the RMH in DC.  And that he was a kitchen designer.  She mentioned that they wanted to renovate the kitchen there.  Well, they contacted him this past week and asked him to bid on the project!  Of course, because they have a committee, they sent out 15 letters total.  As of Friday, only three (including Tom) had responded showing an interest.

I am sure there will be cheaper bids from other contractors.  But, I really hope that they look at the fact that Tom has stayed at a RMH off and on for four years now and he understands their needs better than most.  Because they house numerous families (the Richmond RMH has nine rooms) they need to have lots of storage that can be sectioned off for each family.  And then there is storage for food that is donated for all families.  Plus, there are washing issues - I'm thinking more smaller dishwashers vs. one large one.  Anyway, you get the point.

So, keep your fingers crossed that he can do the project!  It would be so awesome to do it since the RMH holds such a special place in our hearts!

And speaking of RMH, the one in DC built a new house and it opened in December!  It doubled in size and how has 26 rooms with private baths for each one!  YAY!  So, when we go in March (ugh) we will get to stay there.  Since they just opened, they registered at a few place for donations - like Bed, Bath and Beyond, Target and Amazon.com.  So, if you are ever looking for a charity (other than The Harlie Fund, of course) that's a great one.  And if you don't want to do money donations - you can always make food for the families staying there.  I can't tell you how awesome it is to come "home" after a long day at the hospital to home cooked food!   And brownies.  Especially brownies.

And speaking of The Harlie Fund... more exciting news I've been meaning to share with you...

You might have noticed the new section in the left column of the blog called THE HARLIE CREW.  Bill Jeffries of Kane, Jeffries, Cooper and Carollo, LLP (my sister's boss, and my boss when I can work - that's my part-time job I've been at for over a year now) started it a couple of months ago.  It is a group of "Harlie Fans" that have committed to make a monthly contribution to The Harlie Fund.  Isn't that the coolest???  And if a crew member wants me to, I can put a link from their name to their website.  So, maybe that could help you out, too!  So, contact Bill Jeffries if you are interested!

And I forgot to tell you that after feeding therapy on Thursday, as we were leaving, Harlie turned around to give the prizes that she earned for self-feeding, back to Allison.  It was so sweet!  Allison told her that she earned them, so she gets to keep them.  That girl asks for nothing material.

And, one last thing for this post (I'm going to make a new one for Friday's events)... I just want to thank our very special Santa Claus for the beautiful gift!!!!  I can't tell you how much I love it.  I actually got two things!  Anyway, I hope you know how incredibly thankful we are!  And how lucky we feel!  And I would love to thank you in person if you ever want to tell me who you are!  We are so incredibly blessed to have such wonderful support in so many ways!  And we are just so blessed to have Harlie.  And there isn't a second that goes by that I don't think about that.

Thank you all!
~Christy

Pre-op is tomorrow

This is just a quick post to let you know that we have checked in at the Ronald McDonald House in DC.  Harlie's pre-op day begins at 8:30am and will last most of the day.  They will  do some blood work, take chest x-rays, EKG, etc.  And lastly, we will get to speak with the surgeon.

I think Harlie remembers what being here means.  At first she started playing with the toys here, while we were unloading the car.  But, a few minutes into walking around she started crying a sad cry, and she did not want to play with any of the toys.  Once we got her settled into the room, she seemed to be better.  Plus, I think she was really tired, because it is now 11pm and she's only been asleep less than 30 minutes.

Traffic was a nightmare, so we didn't get here until after 9:30.  And it takes a long time to unload the car (since someone has to stay with Harlie the whole time, only Tom can go to the car) and get her equipment all set up.

They (the Ronald McDonald House) really hooked us up this time and gave us the best room we've had so far (and we've had a lot of rooms).  It has a double bed AND a twin!  AND a private bath!  Woohoo!  We are in the isolation part of the house though, so if they get a transplant patient, we will get kicked out.

Well, that's all I have the energy for tonight.  I'm sure tomorrow night's post will be full of information.  And if you have any questions you want me to answer, just post it in a comment and I'll make sure I answer it tomorrow.

Goodnight and thank you for all your thoughts and prayers!  We are very appreciative!
~Christy

Crappy, Crappy Day

Maybe I should try to be more positive. Maybe I should wait a little while before I try to write about today. But it's 9:30pm and I want to get to bed sometime tonight.

So, the morning looked promising. I packed some stuff so I could spend the night, thinking that she would be moved to the floor today.

Well, that didn't go so well. Her sats were in the 60s all day on trach collar. They tried to wean her oxygen down (she can't go to the floor on oxygen that high). But, after getting to 50%, she was clearly blue. So, the nurse had to go back up to 65%. Although, to be honest, she's still a little blue.

And she's been crappy, and mean, and nothing makes her happy! I think her attitude really took a downward turn after the physical therapist came by to work on her. She asked me if Harlie wore ankle braces, and I said yes. She asked to see them. So, I gave them to her. I wasn't paying attention to what she was doing, but the next thing I knew she had Harlie's socks on and was putting on her braces and shoes. I thought, whatever.

Boy am I stupid!!!! No wonder why Harlie was so cooperative - she thought she was going HOME!!!! She signed "let's go" and took off her trach collar - and there was no getting it back on. She cried and cried and it broke my heart! I had to kick the therapist out of our room.

In general, she's mad. Really mad. She reaches out for me and then when she realizes that I'm not going to pick her up and take her out of there she gets mad and swats at me. And if I am even touching her bed in any way, she swats at me some more. I know that I shouldn't take it personally. She has to let her anger out, and that's what I'm here for. But, it is getting harder and harder to deal with it. Especially when she takes whatever is around her trach (collar or CPAP) off and will NOT let us put it back on. She has a mind of her own and fighting that is not easy!

She did have an hour where she seemed comfortable and was her funny self again. She wanted to get a bath. I know this because she signed "bath" and then dumped out the stuff from the basin. Then she pointed to the soap. So I gave it to her. She pumped the soap into the basin then rubbed her hands all in it. Then she rubbed her soapy hands onto her legs and feet. It was quite funny because I really think she was truly trying to bathe. You should have seen her scrub her feet - she was very thorough. She even tried to climb in the basin, but it was too small. Then she grabbed some kelly clamps (they look very similar to scissors) and she tried to use them to cut off her hospital bracelet around her ankle. She SO wants out of here!




A friend of ours (Mike) had to go to Maryland for his job today, and stopped by here for a visit on his way back to Richmond. I was so glad that he came by. For several reasons.

1) it's always nice to have a visitor. For me and for Harlie. I forget that she's not a baby anymore and she is fully aware of who is around her. It has to be somewhat comforting for her to see familiar faces. And she's surely tired of mine!

2) we went out of the hospital for lunch and it was SO nice to get out of here for a meal!!! It was the first meal I've had out of this place since Thursday.

3) he took me by the RMH so I could take some things back to my room without having to walk the two miles carrying them. Since I thought we were getting moved to the floor, I packed my stuff to stay at the hospital, and took the shuttle in since it was heavy. But, since I'm not staying here now, I need the stuff back at my room. But, the shuttle leaves to go to the RMH at 5:30pm, which is WAY too early for me to leave her. Anyway, it just worked out perfectly. And I really, really appreciated the break and the help. So, thank you Mike!!!

Well, when I got back to her room after lunch she was BACK on CPAP! UGH!!! VERY disappointing!!! What is going on?!??!?!?

They said that she will stay in the CICU for another night.

I'm just so disappointed. I don't understand what's going on. In the morning I'm going to ask them what their plan is to FIND OUT what's going on. We're right back where we always go - is it a pulmonary issue or cardiac issue? AAAAAGH!!!!

Personally, I think she needs to get up and out of that bed. Maybe moving and walking around will help her lungs (not to mention her spirits!). The problem is that she has an arterial line in her wrist and a line in her chest that goes right into her heart. And she cannot be moved around with those lines (especially the heart one). I asked if we could let her sit in my lap and they said no. So, I think they need to remove those lines and let her get up and about. I will suggest that at rounds in the morning and hopefully they'll go for it. I know it won't be an easy argument. They like to keep those lines for an emergency. But, I just think we need to break this cycle - we're not getting anywhere!

Oh, she keeps spiking fevers. So they keep taking blood and respiratory cultures, but so far there's no growth. But they have her on antibiotics, just in case. The nurse had a good theory today. She said that they had changed her order for Oxycodone to be given as needed (they were giving it on a schedule). Well, she didn't get her normal dose, and that's when she started acting so agitated (and mean). So, she gave her a dose, plus Tylenol for her fever to see if that made her more comfortable. When that didn't calm her down, they gave her Ativan (for anxiety) and that seemed to help.

So, today was a MAJOR setback. We've never had this much trouble getting her off breathing support. I really hope we figure this out soon.

I'll update as soon as I can in the morning.

Thank you!
~Christy

Post-Op Day 6 - pm update

Today has been a good day.

At around 3pm they put her on a trach collar to see how she would do. It is now 7pm and it looks like she's doing okay. Of course, she's on a TON of oxygen (75% - holy crap!) and her sats are still only around 70! But she seems happier off the CPAP. And her nurse and I are MUCH happier, too, as we don't have to hear that incessant $%#$% beeping of the vent!

11:24pm

I started to post an update around 7pm - as you can see I didn't get very far. So many interruptions!

But good ones tonight!!!!

My Harlie seems BACK!!! After a few hours on the trach collar she seemed to perk right up. She started signing all kinds of things and was interactive and... FUNNY!!! That's my girl! She sat up and wanted to brush her hair and her teeth and she wanted to wash her hands (which we couldn't let her do yet - too many connections). And she was making everyone laugh by being her funny little self. Granted, she was still breathing fast - but at least it wasn't as labored as it was. And as long as she's acting like she feels better, then it is obvious that things are improving now! WooHoo!!!!

So, the doc said that if she does well on the trach collar all night long and she's fine in the morning, they are going to send her to the floor. I am VERY happy about that. She would lose a bunch of connections and then I could put her in a wagon and get her out of her room for a little bit. Plus, I could start bugging them about discharge!!!

Oh, she started taking off her own diapers. She takes her hands and undoes tabs and then grabs the diaper in the front, lifts up her bum and yanks the diaper up and off. Then hands it to me (or the nurse). I think it's potty training time...

Of course she doesn't want anything to do with me. She wouldn't wave goodbye when I left, or sign that she loves me. Even though I kept signing it to her. Quite frankly, it was a little embarrassing. I'm going to let it slide this ONE time, but that's it.

Here is Harlie sitting up and trying to smile, which is a MAJOR improvement! You can still see something's wrong with her eye...





Well, I really need to get some rest. Unfortunately my whole night was thrown off. I got a call from the RMH that they had to move me into a different room. They have this one area of the house that can be completely cut off from the rest of the house so they put transplant patients in there. They have to be kept separate to keep them from being exposed to germs while they are getting treatment or something. Anyway, so I had to move and it took me forever!

Which is why I am just now finally getting to bed. So, I will update as soon as rounds are done.

Thanks for thinking of us!!!
~Christy

Post-Op Day 4 - late update

At 7pm tonight I went to go get some dinner downstairs and when I got back to her room, this is what I saw...



Now how darn sweet is she? And while I think she looks quite comfy and cozy, it makes me oh so sad!!! I try so hard not to be sad, and for the most part, she really helps. It is almost impossible to be sad when she's so happy and playful and funny. But, she's not any of those things right now. And I miss her!

As far as how things went today...

They pulled her chest tubes out, which is great. While they tell me that is pretty painful, she should be much more comfortable later. And I really like not hearing the bubbling of the suction. Plus, it's just one less thing to have to worry about.

She had a fever today. They took cultures, just be on the safe side.

They took her off CPAP, but decided to put her immediately back on. Her heart rate was still pretty high (around the 160s, which is very high for her) and with the fever, they just didn't want to tire her out too much. After a few hours, they took her back off CPAP to see what she could do. And then a few hours later, they put her back on CPAP again. They said she will stay on it for the rest of the night.

I forgot to mention that they were thinking that she had a collapsed lung on Thursday. When they took another x-ray on Friday morning (after she'd been on CPAP all night) the x-ray looked "significantly better." So, hopefully another night on it will do the trick so she can come off of it for good tomorrow.

They have been watching her heart rate closely today. They took her off the pacemaker to see what she would do. And then they put a holter monitor on her to get a more detailed look at what's going on. She will wear it until Saturday night and then the doctor will read it on Sunday. The reason why this is an issue is because she already had 2nd degree heart block (her heart beats have long pauses and short pauses, with no rhyme or reason) and with her main heart defect (congenitally corrected transposition) she is at a higher risk for complete heart block. Which would NOT be good, and would make her pacemaker dependent.

Tom left last night. He took his mom and Murphy home after our fun day yesterday. It is always so much harder when he's not here. He always makes sure we eat right and it's just plain better when he's here with me. Since he drove them home last night, he took the car. Which is not that big a deal. The RMH has a shuttle to the hospital during the day. But today was so pretty, that I decided to walk there (it is about two miles, one way). Plus, I knew I was going to have to walk home anyway because they don't have any shuttles back to the RMH after 5:30pm. And I like to hang out with Harlie until she goes to sleep for the night. Luckily, it's staying lighter longer. I just don't want to walk home in the dark.

My mom came up on the train today to spend the day with us. Again, I was hoping that Harlie would have some sort of reaction. Nope. She still just lays there like a wet noodle. No spunk. I am really hoping that she'll start to turn around tomorrow. If she doesn't, I will officially be worried.

As of right now, there are two theories as to why she's not more herself.

One is that all the sedative drugs she was given could have settled into her tissues and so her body could be still feeling some of the effects.

The second is that she is working so hard to breathe, that it's just too hard for her to focus on anything outside of breathing. Basically it's like she's running a marathon. I mean, how much talking, laughing, etc. do you think marathon runners do while running?

Either way, she should be getting better by now!

So, she will remain in the CICU again tonight.

Hopefully I will have a good update in the morning. Thanks for thinking of us!!
~Christy

The night before heart surgery...

Just a quick update to let you know that we are all settled in at the Ronald McDonald House (RMH). I think I wrote earlier that we were going to go to the water park this afternoon before getting on the road. Well, that didn't work out. It took us all day to pack. Not knowing how long you're going to be gone makes it a lot more complicated.

Right as we were getting ready to leave, Murphy was playing with his friend, Cole (our neighbor) and he was dying to go and play at his house. So he and Cole came in to ask us if he could go over and I told him yes, but we had to say goodbye first. Without even blinking he yelled, "Bye!" and started to run out the door. Ahhh, don't you just feel the love? Of course we made him come back to give us proper hugs and kisses. I really hate saying goodbye to them. I know they will be just fine with their Grandma and Nana taking care of them. But still, I miss them.

Anyway, we took a few quick pics while Harlie got her breathing treatments...

We gave her a bath and then wiped her all over with this pre-surgical stuff. They say that it is supposed to help cut down on infection afterwards. We have to be there at 6am and they plan on taking her at 7:30am.

I thought I would be more emotional about this. But I think I've gone into preservation mode. I think not knowing exactly what will happen tomorrow helps a little, too. For all I know he will only do one surgery and we can go home in a week. So, maybe it's a good thing.

Well, I'm feeling a little loss for words, so I'm signing off. I will try very hard to update when I can.

Thank you so much for your support. We couldn't get through this without it.

Much love,
Christy and Tom

Ronald McDonald House

We arrived at the Ronald McDonald House (RMH) last night shortly after 8pm. At first, Harlie was a little intimidated and didn't want me to put her down. I'm thinking the big giant gorilla next to the check in area had something to do with it.

Then we walked through a few hallways lined with many, many toys (the picture doesn't do it justice) on our way to our assigned room.

They aren't very busy right now and we got a whole wing to ourselves, which rocks. As of right now, we don't even have to share the bathroom. Woohoo!

As soon as we got to our room and I put her down, she made a beeline back to the toys, signing "play" the whole way there. She got a power nap on the way to DC so she was charged and ready to go! Unfortunately there are a LOT of stairs to get into the RMH, so Tom got quite the workout unloading the car. You really have no idea (well, some of you do) how much stuff we have to take with us when Harlie has to sleep out of our home. Crazy!

Anyway, once I gave her a little while to walk around and get comfortable (she ended up going up to the gorilla and pointing and signing "gorilla", so she was fine after that) and play it was challenging to get her to stay in the room. But it was late and she needed her breathing treatment and sleep for an early morning and big day ahead.

As you can see, it didn't take long for her to get comfortable...

And I had nothing to do with that pose. She did that all on her own. She cracks me up.

Our room is right next to the one we had right after she was born. It is so awesome to see Harlie walking the halls where we were postpartum. I remember so much about that time and what a difference to have her with us! We are so much happier!

Well, we must get ready to go to the hospital. We have a very long day ahead of us. I will try to update the blog as I can.


Thank you for all your support!
~Christy

7pm Update

7PM - Well, they pulled the chest tube out at noon. They took more x-rays at 6pm just to make sure that there wasn't a lot of air in there. Then the doc came to tell me that they were just not comfortable sending us home based on those x-rays. There is still some air and they want to wait till 10pm to see if it is stable or not. So, we decided to go on ahead and stay another night. Hopefully, we'll be on our way home in the am. Of course, I already went and check out of RMH today. But, luckily, they are letting us have our room back for the night. Well, gotta go. Thanks!