Bad Mommy Moment

So a friend of mine from the down the street walked by on her way to take her boys to the playground. She made the very unfortunate decision to ask us if we wanted to come along.

The three big boys were riding their bikes. So Harlie wanted to ride her tricycle. There is NO way she would make it to the playground on her tricycle. So, I got the bright idea to get a rope and tie it to the front of her bike so I could pull her when she got too tired.

We only made it a few houses down the street when this happened...





We were turning a corner, she steered straight while I pulled to go around the corner. The bike went over and Harlie's head it the pavement.

Bow in her hair?

Check.

Sunglasses?

Check.

Helmet?

Aw crap.

She doesn't have one. And I don't know why I didn't even think about it. I guess I was so excited about the prospect of her being able to ride her tricycle that I... well, I lost my head.

And to be honest, I remember reading on a Goldenhar support group that a lot of the kids had a really hard time with helmets because they just didn't have enough of a chin for the strap. They just wouldn't stay on. And I guess somewhere in my mind, I wrote off her ability to wear a helmet. She does have a chin now. Not a symmetrical one, mind you. But, still a chin. Maybe a part of me was afraid that she would still have the same problem.

But, I guess we'll find out for sure this weekend!

Back to the accident... I knew it was going to be ugly. I picked her up and told my friend to look for me, because I couldn't. Yes, there's a gash, she said. I took a quick peek, saw blood, and ran her home.

That's probably when my friend started to regret the decision to invite us along.

She was left with five kids (three of them on bikes and already a block ahead). But, luckily, a middle schooler that lives on our street was helping us out keeping up with the boys on the bikes. Thank goodness!!! Thank you so much G!!!!

So, I took Harlie home, got her cleaned up, called my friend/nurse, Jennifer and asked her what to do. Once I cleaned it, I realized that it wasn't nearly as bad as my imagination made me believe. So, I put her in the car, went to the drugstore and bought some of those butterfly closers. Then I took her home, gave her a bath, and Jennifer came over to put it on for me.

Harlie put up a good fight, but we prevailed. That photo will come tomorrow.

Then Harlie and I went to pick up the boys from my friend's house. She fed them dinner while I was getting Harlie straight. And then saved some for me to take home. Seriously, how nice is that?

I love my neighborhood.

Thanks, B!!!!!

We'll see how her goose egg looks tomorrow. I'll certainly let you know!

Thanks,
Christy

5 Year Anniversary

Well, today was a very busy day. We took Murphy to his last day at his daycare. Even though I know he's going to be very happy at the new place, I felt kind of sad. Although I will not miss the drive, I'll tell you that.

Then we went to her helmet appointment. That went fine. Unfortunately I am paying for a mistake I made last week. She's supposed to wear her helmet 23 hours a day. Well, while she was in the hospital this last time, I put it on and just didn't take it off - for like 3 days! Once she got the n-j tube, we put the tube in the velcro strap to keep her from grabbing it. So, once we did that, I just didn't take it off. Well, when I finally did remove it, she had an abrasion over her left eye. Oops. So I had to leave it off to let that heal. Hopefully I can put it back on tomorrow.

After that, we went to her GI appointment. As is very common with my appointments with MCV/VCU docs, an intern comes in to chat first. They ask a gazillion questions and it takes forever. Then they go tell the doc and then the doc comes in and you have to repeat a bunch of it. Well, it made me so mad last time we went to see the GI doc. I have spent countless hours talking to every kind of doctor at every level. Quite frankly, I'm tired of it. So, when the intern came in to ask us politely if he could ask us some questions, I told him no.

I joked with Brandy that I should tell him I charge a fee to "train" new docs. But, I didn't. I told him that Harlie is just too complicated and I just don't have the energy today. Just come in with the doc and I'll tell you both at the same time. Once the doc came in, and we started talking about everything, I think the intern understood. I don't really have the time or energy to talk about the details of the GI appointment. I'll have to write that one later.

Then we went to see the pediatrician. That was okay I guess. Harlie is sick again, maybe its just a cold. But, unfortunately, she's back on O2 and she had to have it all last night, and all day today. It's a bummer. But hopefully it is just that she's sick and nothing more serious than that.

Well, tomorrow is our 5 year wedding anniversary. Hard to believe. Seems like it has flown by. We're not sure what we're going to do yet. I guess it's kinda hard to plan too much in advance.

Well, it is late, so I'm going to sign off now. Thank you again for thinking of us and for cheering us on.

Take care,
Christy

Mr. Walt

So, we had another helmet adjustment today. Her helmet is definitely hard work on all parties involved!!! But, hopefully, once her head shape starts to improve, it will become easier. Harlie had a good day today. She was very happy and playful. She is ticklish now, which is fun. She only vomited once, which is great. Kate (Hannah’s mom) and Kate’s mom came to visit us today. We had a really good time.

Oh, I have a funny Murphy story I thought I’d share. He takes computer class at preschool. It is once a week and the teacher is Mr. Walt. Every now and then Murphy will say or do something we haven’t seen before. So, we say, “Murphy, who taught you that?” or “who showed you that”, etc. And, very often, (like unusually often) he will answer, “Mr. Walt”. And whatever the thing is – is not computer related! So, it is a joke between Tom and I that we really want to meet this Mr. Walt. He sure does know a lot.

Well, the other night Tom was putting Murphy to bed and Murphy told Tom that his stuffed lion farted. I’m laughing just thinking about it. Tom was surprised and said, “Murphy, where’d you learn that word?” And, you guessed it, Murphy said, “Mr. Walt”. I wish you could hear the way he says Mr. Walt. It is too funny. I don’t know where he comes up with this stuff. Kids sure do make life interesting. Well, that’s it for tonight. Talk to you later!

Take care,
Christy

Quick update.

Harlie seems to be getting back to her usual, happy self. She was very smiley today. She is doing great wearing her helmet. She is wearing it the full 23 hours a day now. And she really doesn’t seem to mind at all. We take it off to give her a bath and I will take it off during tummy time and to let her roll over.

She had physical therapy today and we left it on during the whole session. Hopefully the weight of the helmet is helping her gain some strength. Her physical therapist said she is doing really well. Harlie even sat up by herself for a few seconds. Hopefully once she learns how to balance and realizes she can use her arms and legs, she’ll really take off.

We went to see the GI doctor and nutritionist yesterday. Nothing too eventful there. She has C-Diff again. That’s a bummer. She had to have Vancomycin again in the hospital, so that’s not surprising. Plus, she’s on an antibiotic for her ear infection. She’s now on 7 medications. Ugh. We were down to 3 at one point.

We see a new ENT doc tomorrow (here in Richmond). The only ENT we’ve seen is one in Dr. Magee’s practice in Norfolk (other than hers in DC). Oh, you should see Harlie when Murphy walks in the room – she goes crazy! Her arms start flapping and she kicks her legs and laughs. It is so funny! Well, just a quick one tonight. I hope you are all well.

Take care,
Christy

Helmet appointment.

Well, I think Harlie is starting to feel a bit better. This afternoon, she was much more herself and tolerated sitting up in the high chair for a while. She started this funny thing today. When you smile at her, she smiles back and tilts her head to one side and scrunches up her shoulders. It was hysterical. It's like she's flirting. It is so nice when she is interactive like that.

On Friday, we went to get her helmet adjusted. I was alone that day and getting her out the door proved to be especially challenging. She has a feeding tube that is connected to a backpack that I wear, a pulse ox monitor hooked up to her foot, and a tube from her trach collar to the oxygen tank. So, I have to carry her, a monitor, a backpack, an oxygen tank, a suction machine, and a diaper bag. Yeah, it's something.

So, I hooked her up to our handy-dandy traveling oxygen tank and got her ready to take downstairs. I turned on the tank and heard it come on, put it on her and started to gather everything in my arms. But, her alarm was going off and she was not looking good and started to turn color. I checked everything and realize that the tank has gone empty! So, I grab another tank (larger and not so travel friendly). Hook that up and hear it come on. Carry everything downstairs. She's not looking good again. Alarm starts sounds. I realize that tank has gone empty, too! So, I run in the garage and grab my last tank (only one "emergency" tank left in the car). I transfer the regulator onto the new tank and realize that I don't have the key to open it. So, I run upstairs to grab the key from the first tank. Run back downstairs, open the tank and she's like, "ahhhh". And so am I.

I thought about calling and canceling the appointment, but darn it, we need to make some progress somewhere! So, I loaded up the car away we went. Luckily, Christina only had to make a few minor adjustments, so it was a quick one. Harlie slept the rest of the day! And that night! I know she doesn't get good sleep at the hospital, so I guess she needed to get caught up.

Well, she has been doing great wearing the helmet. I can't believe how well she tolerates it. If it weren't so hot, it would be a snap. I took her to the neighbor's this weekend, but didn't make her wear it outside. WAY too hot for that.

Tomorrow we have an appointment with her pediatrician; Tuesday, GI; Wednesday, PT; Thursday, ENT; Friday, PT and Ortho. So, another busy week ahead. Oh, and I think we're supposed to see cardiology again, but we don't have an appointment yet. Hopefully, we'll hear something soon from DC. Well, that's pretty much it. I hope you all had a nice weekend.

Take care,
Christy

Home again.

Well, we are home. Harlie is still not herself. But hopefully a good night’s sleep in her own bed will help.

As far as what we learned today…I spoke with the pulmonologist and he showed me her CT scans. The good lung is in the middle and it is a small patch. He is guessing that's about 20% of that lung. Unfortunately, when comparing the two CT scans, it is clear that the mass has gotten larger since her birth. It is in her lower and upper lobes, which is not characteristic of a CCAM (which is what was diagnosed a year ago). The other unusual thing is that CCAMs either stay the same size or shrink. They typically do not grow after birth.

So, what is it you ask? They don’t know. So, they are definitely going to have to remove the mass. Then they will biopsy it to find out what it is. The doctor said that normally you can remove one lobe at a time since there is a clear separation. However, there is a chance that the mass cannot be “neatly” separated from the good lung. Which means that they might have to remove the entire lung.

The team in DC will be receiving all the information in the next few days, but one of the main docs is on vacation next week. So, they are thinking that they will not be able to have any answers to us until the last week in June. Basically, all we are waiting on now is when the surgeries will be. Dr. Jonas is her heart surgeon and he will also be removing the mass.

Now that I've had a little time to begin to accept where we are, I am ready to move on and get this behind us. So, hopefully we won't have to wait too long.

At this point, Harlie is back on O2 – full time. The second you take away the oxygen mask, her sats drop and she turns color (blue). Her x-rays after the heart cath were great. So, no major problems in her left lung as far as fluid build-up or anything. Hopefully, we’ll find the answer to this soon. The required O2 is definitely a downer. Makes her way less portable among other things.

We got her new helmet today. It just needs a minor adjustment and we are scheduled to have that done tomorrow. So, hopefully we’ll be able to make some headway on that now. hehe, pardon the pun.

Tomorrow will make one year since we learned of Harlie's heart defects. It has been the longest year of my life. But when she smiles at me, it all seems to melt away.

Well, that’s it for tonight. Thanks for all your support.
Take care,
Christy

C-Diff and rambling...

So, the C-Diff (short for Clostridium difficile) test came back positive. So, now she’s on antibiotics to treat that. Here is a little explanation that I found:

C. difficile bacteria are everywhere — in soil, air, water, human and animal feces, and on most surfaces. The bacteria don't create problems until they grow in abnormally large numbers in the intestinal tract of people taking antibiotics or other antimicrobial drugs. Then, C. difficile can cause symptoms ranging from diarrhea to life-threatening inflammations of the colon.

It went on to say that it is most often spread while in the hospital. And to add to the risk, she was on so many antibiotics during all her line infections, including Vancomycin, which evidently is pretty powerful. She started showing symptoms while in the hospital, but everyone attributed them to her formula change. I am so glad that her nutritionist suggested the test. Hopefully, once we get this under control, she will start to gain weight again.

On Thursday, Harlie got another mold of her head made for her helmet. It should be in the second week of June. And hopefully she’ll be able to wear it with no problems so we can get her head fixed. I know it is hard to tell in the photos I post. I will take a picture from the back so you can see, too. My only fear of her being able to tolerate it is that it is so darn hot, and it is summer. She will have to wear it 23 hours a day for several months. So, we’ll just have to keep her in the a/c.

After that, we went to see her pediatrician. Nothing major happened there. Just him getting to know her and to talk about her upcoming appointments.

On Friday, her physical therapist came to see her for the first time since March. She was very pleased at how well she has done despite being in the hospital for the last 2 and a half months. She is going to come at least twice a week for the next couple months. Hopefully, between that and me working with her the rest of the week, Harlie will be sitting up on her own very soon. She has so little fat on her bum, that her tailbone is incredibly sharp. I am a little worried that sitting up for an extended period of time might hurt her. But, hopefully with the new antibiotics, we’ll start to see a faster weight gain. And maybe by the time her balance and strength can handle sitting up, she’ll be fatter.

Oh, on Thursday night I went to see Martina McBride, Rodney Atkins and Little Big Town at the coliseum with Nancy and some of her friends. I wasn’t really a Martina fan before, I was just going to go out with the girls, but seeing her live gave me a new respect for her voice. Rodney Atkins opened for her and he sings a song called If you’re going through hell. It came out last summer and the first time I heard it – it spoke to me. Of course, I was pregnant with Harlie and we knew about her chest mass and heart defects. Tom and I said that was our theme song. For those of you that don’t know the song, here are some of the words:

Well you know those times
When you feel like there's a sign there on your back
Says I don't mind if you kick me
Seems like everybody has
Things go from bad to worse
You'd think they can't get worse than that
And then they do

If you're going through hell
Keep on going, don't slow down
If you're scared, don't show it
You might get out
Before the devil even knows you're there

Anyway, it is funny how you think some songs were written for you. I think it still applies. Monday is the last day to get your Pampered Chef orders in. Well that’s it. I think you are all caught up. I hope you are all well. Talk to you soon.

Take care,
Christy

Cranial Mold

Hi. Today was a busy day. We had our weekly appointment with the pediatrician. Unfortunately, during her hospital stay, they took a blood culture and it came back with a possible germ. They are thinking that if she really had that germ, she would be way sick, but she’s not. So, they think the test isn’t accurate. So, they had to take more blood today and they usually have to stick her a couple of times before getting any. I tell you, this girl is going to be immune to pain pretty soon.

They weighed her as usual, but the weight can’t be right. Last week she weighed 10 pounds, 1 ounce. Today she weighed 10 pounds, 10 ounces. Although I wish that were true, there is no way she gained that much weight when she went 2 days without her normal feedings. She has been on Lasix since she was born and they just told me to stop giving it to her. Lasix helps your body get rid of excess fluid (to help prevent congestive heart failure). Today she was so junky (had a lot of secretions) and her lungs sounded really wet. So, we gave her a dose of Lasix and we’ll see how she does. Already she sounds better.

Unfortunately she needs her monthly RSV shot, so we have to go back tomorrow morning for that. Dr. Smith said considering how she sounded, it wasn’t a good idea to give her that shot today. So, I guess we’ll weigh her again in the morning and see what that weight is.

This afternoon the physical therapists came over to get a mold of her head for a cranial remodeling band (aka helmet). They were so nice to make a house call for us so we didn’t have to go out again. I can’t tell you how great it feels to know that people will go out of their way to help Harlie stay comfortable. Well, we laughed so hard! Harlie was hysterical. She loved getting the mold made. She didn’t cry until she took the mold OFF! She said that’s a good sign that she will tolerate the band. I picked out a patterned band – we will either get pink bunnies, or a Dalmatian print, whatever is available (there wasn't much to choose from). I figure we might as well have fun with it. I took lots of pictures and posted them so check them out when you get a chance. Well, that’s it for tonight.

Talk to you later!
-Christy