Went to the zoo

Well, on Friday we went to see an ENT in Newport News (his main office is at CHKD in Norfolk). The reason why we went to see him is because I was told by Harlie's ENT in DC that we should also see someone who is part of her craniofacial team about ear reconstruction. He was recommended by Dr. Magee. I liked how he opened, "So, I see you need some more doctors." I love funny people. He spent a lot of time with us explaining everything. Basically, it comes down to this:

1. We need to test to see if she has the inner workings and ability to hear on her left side. The test is called an Auditory Brain Stem Response (ABR) test.

2. If the test shows complete hearing loss, then all we will need to focus on is ear reconstruction.

3. If the test shows that she has some hearing capability, then we need to determine how much and what we want to do about it.

He does not recommend ear canal construction (actually giving her a canal). He said that the path is never "normal" and the risk to hitting a nerve and causing facial paralysis is too high.

He prefers a Bone Anchored Hearing Aid (BAHA). The hearing aid is drilled into the bone above the ear.

As far as the actual ear building - he always sends parents to see a guy in Northern VA to talk about a prosthetic ear first before considering reconstructive surgery. He used to be a CIA disguise specialist. Pretty interesting, huh? But, we have plenty of time before we'll be looking into all that.

We also discussed her future jaw reconstruction surgery. He explained why it is so complicated. Especially with her missing some bones on the right side of her jaw. But, I will not think about this until I speak to Dr. Magee since he's the one that will be doing that.

So, as of right now, her ABR test is scheduled for October 23rd at the children's hospital in Norfolk. We will get the results immediately, which will be nice. Hopefully she wouldn't even have to stay overnight. But, with Harlie and anesthesia, I won't count on it.

So, enough medical stuff for now.

On Saturday, we (Tom, Murphy, Harlie and I) went to DC to the zoo. The Children's Hospital's Heart Institute sponsored an event there.

On our way up, I sat in the back between Murphy and Harlie. I do not recommend this. Especially for long trips. It took only a matter of minutes till I had regressed into a child myself.

"Murphy, stop touching my seat belt."

"Sorry, Mama." lots of laughter.

"Murphy, stop touching my seat belt."

"Sorry, Mama." lots of laughter.

"MURPHY! I SAID STOP TOUCHING MY SEATBELT!"

"Sorry, Mama." lots of laughter.

"YOU TWO, KNOCK IT OFF!" (that was Tom)

And while all that was happening, Harlie kept taking off her HME (the barrel thing that covers her trach). Literally, every 2 seconds. So, I keep saying, "No, Harlie!" To which she just smiles and laughs. And I have to put it back. Over and over again. I really don't know how I am ever going to discipline that child.

But we made it up there in one piece. And the weather was perfect. It was so nice to get Harlie outside. She kept on swinging her legs off the end of the stroller. It was really cute. And it was really nice to see our social worker (Kristen) and some of Harlie's nurses, and doctors. Especially since she is doing so well now. And it was good to meet other heart families as well.

Well, they had a raffle and they gave a lot of goodies away. And if you can believe this, we won the grand prize - a week's vacation in Myrtle Beach. So, now we HAVE to take a vacation! We are already looking forward to it. Funny, because I was really bummed we couldn't take a vacation this past summer.

So, then we leave. Get to our car, and we have a flat tire. Tom said there isn't just one nail in it - there are two! Funny how things balance out sometimes.

Well, that's it for tonight. Talk to you soon!

Take care,
Christy

One year checkup

Well, today we went to our very first "well check" with the pediatrician - for her 1-year check up. She got four shots and she weighed in at 16 pounds, 1 ounce. But she feels so much bigger than that! I really hope she starts gaining more weight soon. We have to keep her rear-facing in the car seat until she's 20 pounds.

Tomorrow we have physical therapy and then we have to jump in the car and go to Newport News for an appointment with an ENT. He was recommended by Dr. Magee (her plastic surgeon). We will talk about her left ear (the one with no canal). So far, I haven't spoken to anyone about that ear. So, I'm anxious to learn more about what we can do, if anything.

I forgot to tell you that on Harlie's birthday, after Tom got home from work, we (the four of us) went out to dinner and then went to Build-a-Bear. There is a "champion" bear that has patches and stitches on it (from surgeries I assume). So, we got that one for Harlie with the doctor's scrubs outfit. And when we got home, I performed a tracheostomy on him. haha I'll take a picture of him and post it soon.

Murphy loved getting his "bear". He picked out the dinosaur (shocking, I know). And he loved the whole process. It was really nice to go out as a family and we all had a great time.

Oh, I found out that Harlie's surgery has been re-scheduled for Thursday, October 4th. A lot of people have asked how I kept my cool about the whole situation. But, I think I've been conditioned over the past year and a half to know that things happen - and not always the way you want them to. And I don't have the energy to waste on anger (and it would have been mis-directed as the ones I was speaking to had nothing to do with what happened). And really, it was laughable. Nothing has come easy to Harlie. So, I wasn't that surprised, really. And my mom and I had some good talks in the car on the way up and on the way back, so that was nice. I prefer comedy to drama - and it gets me through. Now, that's not to say that I can't get angry and speak my mind. You should have heard me when I spoke to that other nutritionist - the one that never returned my calls. Now, then I did get angry and I let the person who was responsible know it. But, thankfully, that hasn't had to happen much.

Well, I'll let you know how the ENT appointment goes. Talk to you later!

Take care,
Christy

Happy Birthday Harlie

What a difference a year makes. What we felt one year ago today, is so completely different than what we feel today. And thank heavens for that.

I think of what it was like the hours, days, and months before Harlie was born. I had no idea of all the things to be afraid of. Or of all the things to be thankful for. Who knew that we take breathing for granted? I mean everyone does it, right?

I remember the day she was born so clearly. I don't know how we got through it. Or the next day. Or the one after that. It was terrible. It took months till things got "better".

And I am much more open about things now.

Like, for example, just hours after Harlie was born, and I was able to make the trip across the street to see her. (I remember thinking I shouldn't be dressed and outside, I JUST had a baby!) They wheeled me to the PICU and she was in the first room on the left and there were a lot of people in there working on her. It was very scary. And, of course, we were all crying (me, Tom, my mom and my sister). One of the genetic doctors came up to me and said, "I know, she is frightening to look at." It seems like a harsh thing to say to a mother. But, she was right. And that is exactly what I was thinking at the time. To tell you the truth, it kind of made me feel better. At least I didn't have to feel guilty for thinking that on top of everything else I was feeling.

But look at Harlie now. And look at me now. Our life is certainly not what the average person would call "normal". But our life is normal to us. And that, in itself, is an accomplishment as far as I'm concerned.

I can't believe I'm going to write this. And Harlie's OT is going to love it (and by that I mean, she'll say, "I told you so."). But, a few weeks ago her and I got into a deep conversation about Harlie and special needs kids in general. She said that she knows a mother of a child who says that looking back, she wouldn't have it any other way. I said, "No WAY am I ever going to feel that way." I probably said that was BS, too. And I MIGHT have said she's just saying that to make herself feel better.

But spending the last few days thinking about this past year...well, maybe I am starting to see what she means. If Harlie and my family didn't have work so darn hard for every "little" thing that most people never even think about...how would I have ever felt the joy and happiness I felt when she sat up for the first time? Or when we went one week without oxygen? Or when I heard a faint "waa" the last time I changed her trach? Or - dare I dream - of the day I will hear her sweet little voice and her sweet little laugh.

I will never be glad of all the obstacles she will have to overcome. Never. But I guess, in time, they will make us who we are supposed to be. And how will we ever be able to think of us in any other way?

Yes, this year has been quite the roller coaster of emotions. But I am happier today than I have been in a long time. I am proud of my little girl, my son, my husband and myself. And I am so incredibly thankful.

Happy Birthday sweet girl.

And thank you - to everyone who supported us and stuck by us this year. For the dinners, the hospital visits, the phone calls, the cards, the prayers, the donations, the gifts, the hugs, the talks, the encouragement, the messages, and most importantly, your time. Thank you.

No Surgery Today

UPDATE - I added the video montage of Harlie's First Year to My Favorite Links. Check it out when you get a chance, and don't forget to turn the sound on.

Where to start?

So, we pack, we load, we drive, we sit in traffic, we stop for food, we arrive at Children’s at 8:30pm. I remember that you have to check-in at the Ronald McDonald House (or Ronald Donald House according to Murphy) by 9pm because the person working closes the desk for the night. So, I tell my mom to just drop us off so she can go. So, I load the stroller (with 7 bags AND Harlie) and go on up to check in as previously instructed.

“I’m sorry ma’am, what is your baby’s name? And why are you here?”

She picks up the phone and makes a call.

“Who is the doctor?” More talking into the phone.

“What is the first name of the doctor?”

It was at this point that I said, "uh-oh".

I gave them the phone number of the person that called me and gave me the very simple and clear instructions to come to the hospital. (yes, I had it memorized – very scary considering I only called it once)

Harlie and I sat in the ER for a long time. Fun, when you're holding a now squirmy baby (I really am happy about the squirmy part - I love that she wants to explore her surroundings now - but she does wear you out!). The charge nurse came over to me and told me that they tried paging the surgeon, but he didn’t answer. “He’s on vacation”, she says. "But he’ll be here tomorrow." So, if he has surgery in the morning, shouldn’t he be at home tonight? I mean, when I worked, and I went on vacation, typically I came home the night before. Right? So, she tells me that she’s called the resident and she’s going to admit us. And she’ll be “right” back.

What really got me was the way they acted towards me. Like I had my information wrong. I spoke to someone about my insurance. I spoke with an anesthesiologist and then the nurse about coming up. And the charge nurse tells me “this is a teaching facility, there are a lot of people involved”. I wanted to open up my notebook and show her just how many people are involved.

So, we continue to sit in the ER. A guy vomited all over the place. The woman that was with him said “See what I have to put up with?” to anyone who would listen. It was lovely. So I got up and told the people that I already spoke to that maybe I should just go home. So, they finally sent me to Admissions.

The lady there was very nice. She said that they were putting us in room such and such. “What service is that under?”, I ask. Neurology and Orthopedics. Huh? That’s the only place they have an open room.

So, here’s what I’m thinking… someone wanted Harlie to be there the night before – for a reason. Trust me on this – insurance will not pay if it isn’t completely necessary (and even then sometimes they don’t pay). So, I can only assume that because she’s having surgery on her bum, that her bowels need to be emptied. And that means she needs some sort of pre-surgery treatment, which is what necessitates her to be admitted the night before. Right? Makes sense to me.

Well, at this point, no one knows what needs to be done. And it is now 11pm and it isn’t happening, which leads me to the conclusion that surgery isn’t happening as scheduled. So, I ask, “Is she even on the OR schedule?” Yes, at 8:30am. So, two surgical residents come down to talk to me. Very nice. Very apologetic. They don’t know about the pre-treatment, but they agree with my thinking. I mention the 8:30am surgery time and one of them looks at the other and says, “I didn’t think it was that early, but I’m not sure.”

And that’s when I said, “I’m done.”

I told them that I need to feel comfortable about this, and this whole night was just not working out. And now that I’m filled with doubt… I would rather go back home and start this all over another time. As I was walking down the hall towards Admissions, I looked at Harlie and she gave me a big smile. If there is one thing I’ve learned since having her, it is to trust my instincts. So that’s what I did. When I come up for my daughter’s 7th surgery, I want them to say, “Hi Mrs. Holton, sign here, walk this way, here’s what’s going to happen and when, etc.”

So, at 11:15pm I call my mom and tell her what happened. She has to get dressed, packed, get the room ready to check out (it isn’t like a hotel where they come and clean it, you have to remove the sheets, etc.). Luckily the person was still awake so my mom got to check out. Then she came to get us. So, we pack, we load, we drive, we get home at 2am.

Check out my pics from our “trip”.

Take care,
Christy

PS - I added the video montage to My Favorite Links - don't forget to turn the sound on!

Harlie's Birthday Party

Well, yesterday we had Harlie's birthday party. It was a lot of fun. She did great. I have been working on a montage of her first year and we showed it during the party. I wanted to upload it so everyone could see it, but the site is doing maintenance so I can't upload anything right now. Hopefully, Tom will be able to upload it for me while I'm gone.

Speaking of, I am about to walk out the door to drive up to DC. Tom and I took Murphy to the bar to watch the Steeler's game (Brandy stayed with Harlie). When I got home a nurse from Children's called to say that we were supposed to be already checked in by now! Ugh! Thanks for the notice! I guess because of the nature of the surgery (by the way it's called an anoplasty) they might need to give her some special meds or something the night before.

So, we hurried up and packed and are about to jump in the car. Unfortunately, Tom can't go with us. Thankfully, now that my mom is retired she is more available so she's going with me. I will update the site as soon as I can. We are really hoping that this will be an "easy" surgery for her and that we'll be home very quickly. Hopefully going into it healthy will help a lot. I can't wait till Dr. Sandler sees her. (he did her lung surgery) I'm sure he'll notice how much better she is.

Well, gotta run. Thank you for all your support!!!

Take care,
Christy

Birthday Party coming up...

So, everything is still going great here. We've had a few busy days, but certainly not like it was. It has been 3 weeks since we've been to the pediatrician - a record for us since the beginning! We have made so many records this month. The longest without antibiotics, the longest on room air, the longest between appointments, the longest without vomiting, etc. I am so glad that we get to go into her birthday celebration on such a high note.

I haven't heard what time her surgery is on Monday. They told me that they would call me Friday or Sunday. It looks like it will be Sunday. This will be the first time that she will go into a surgery "healthy". Hopefully it will speed up her recovery and get us back home on her birthday (Tuesday).

Tomorrow is her birthday party. So hard to believe. So many times I didn't think it would ever come. It is funny because most of the time you think that time goes by so quickly. But, honestly, this year was, by far, the longest of my life. I certainly don't want to wish time away, but I am looking forward to so many things.

Well, I will stop my deep thoughts for now. More later!

Thank you for checking in! Take care,
Christy

Still on room air!

Hi everybody,

It is very weird to not have anything much to report on. Wonderfully weird, that is. Things are still going great. Still on room air and definitely we broke the record. This is the longest she's ever been on room air!

I tell you - she is a different baby now. I listen to her lungs every night before giving her her Pulmicort breathing treatment. Tonight, she sounded completely clear - no squeeks AT ALL!

And now that she's sitting up all the time, she has hardly spit up at all. Now that she is healthier than she has ever been, and no more vomiting, I can tell she is getting more plump. I keep on thinking that when I put her on the scale (we have a baby scale) that she's going to weigh 16 pounds, but still NO! Ugh! We meet with her nutritionist in a couple of weeks.

We have a few appointments coming up - but I can definitely tell that things are settling down. We will see orthopedics in November, and plastic surgery (Dr. Magee) in December. Once we get past her surgery on Monday, it looks like her surgery calendar is clear until her heart surgery. WooHoo!!! So, I think we can start to address her craniofacial issues. And to give me more support, her DC cardiologist said that her current heart/circulation is more forgiving than what it will be after the Fontan. So, if she needs surgery elsewhere, now's the time to do it. So, hopefully Dr. Magee will have a plan of action.

Oh, we (Brandy and I) took Harlie to Saxon Shoes for her first pair of shoes. She needs them to wear in her stander. They are so tiny. The only ones that come in a small enough size are the classic white ones. So cute! And it is so nice to be able to take her out! I am loving it!

Well, that's it for now. Thanks for checking in!

Take care,
Christy

PS, Photos of our trip to the playground are now on the site.

Next surgery quickly approaching...

First things first - things have been going GREAT! I can't tell you how happy I have been lately. She is still on room air - 5 straight days now. I think we are approaching a record for the longest stretch on room air. And to make things even more amazing, we haven't even had to turn on the oxygen concentrator for her naps. She has been able to maintain her best sats ever - even while sleeping!

They want her to be between 75% and 85%. (a normal, healthy person should be close to 100%) Too high sats for too long would be bad for her lungs. And yet she has been as high as 92% while awake. That's CRAZY!

Last week, Brandy had some time off during the week. So, I had to take Harlie with me to take Murphy to school. I just can't tell you how great it felt to be able to carry her in with us! Such a small thing that most people never, ever think about. Much less appreciate and downright ENJOY! And it made my week!!! We definitely got some stares, but I don't think they were bad ones. Just curious I think. I think the helmet stands out. So, it didn't bother me at all.

Murphy's teachers were very nice and enjoyed meeting her. And oh, by the way, Murphy is LOVING his new school. I picked him up on Friday and he looked at me, and got these huge tears in his eyes and said he didn't want to go home. I couldn't believe it. He has never done that before. He made pudding in his cooking class the other day. I can't really blame him for not wanting to come home.

My friend, Melissa, and her two girls, Abby and Isabella came up for the weekend. We took all the kids (including Harlie) for a walk to the pond to feed the ducks and then to the playground. While at the playground I put Harlie in the bucket swing. She LOVED it! She kicked her little feet and held on to the chain. I wish I had thought to take the camera. But I just didn't realize I'd be doing that. It didn't occur to me until we got there. I'll be getting some pics soon though.

We have really been enjoying our little break from so many doctor's appointments. But, unfortunately, we are looking at her next surgery already. I got the call on Friday that she has surgery on September 24th - the day before her first birthday. This is a time sensitive surgery that really should have been done months ago (unfortunately, due to her other issues, it just never made it to the top of the priority list).

This surgery is to correct her anoperineal fistula (we call it her butt reconstruction). Her anus is located too close to her girly parts, and not in the middle of the muscle like it should be. So, somehow, the surgeon will move the opening to be in the middle of the muscle (which luckily, is in the right place). This has been explained to me on several occasions - and I still do not get it. Maybe it just feels so weird and uncomfortable to be talking about this area, complete with diagrams and pictures, with this man I just met, that I simply stop listening. I have determined that I really don't care, I just want him to fix her and make everything work the way it should. He tells us that she should only be in the hospital for a day or two. I am anxious for him to see her again though. He is the same surgeon that operated on her lung just a few weeks ago.

Well, I think this has gotten to be long enough. More tomorrow!

Take care,
Christy

NO OXYGEN TODAY!

What a great week it has been! Yesterday she was off O2 for a good while. And today, she was off the O2 for ALL her waking hours! (We just turn it on when she's sleeping.) We are so thrilled!

It was so great to go to her helmet appointment today without the O2 on our shoulder. (Of course we keep it in the car.) But one less bag, tube, etc. makes a huge difference. Especially this one!

Anyway, her helmet wearing is going well. I think this is the first time that we were able to wait 2 weeks between appointments. Usually we have to go every week.

And she is back on regular ol' formula now (high calorie of course) and today, she managed to keep it ALL down!!! WooHoo!!!

So, just wanted to share all the good news from here. It is nice to have nothing to report but good stuff!

Take care,
Christy

Harlie's First Photo Shoot

Today was a very good day, I think. Harlie has been down to next-to-nothing on the O2. We were able to keep her under a half of a liter all day. And, if you can believe it, we were able to take her off for the photos!

Well, I think Paige got some good ones and I can't wait to see them. I love how she finds cool backgrounds just anywhere. Like on the floor in my dining room. I never would have thought of that.

And I can’t believe how cooperative Harlie was. She was in such a good mood. If she didn’t have all her medical issues, she would be the easiest baby ever. She really has such an easy going personality. It amazes me every day how happy she is.

We had physical therapy again today. Traci put her in her stander again. And Harlie did much better today. She spent a good while in there – not smiling, but not crying either. So that’s something. I’ll attach some photos soon. I will try playing a video for her to see if that helps (thanks Lucy! – even though you’re a cheesehead, with a lot of hair.) I know a certain someone, named Todd, that is a Packer fan and he joined the Steeler Fan Club yesterday. Pretty funny.

Well, just a short one for tonight. Thanks for checking in.

Take care,
Christy

Are you ready for some football?!

So, football season is here! I love football season. I love that it is going to get cooler (mostly so we can take Harlie out more). I love the game and how football brings people together. Sitting around, watching the games, eating, drinking, and laughing. It’s such a fun season. And last year, I didn’t get to enjoy any of it. So, hopefully this year will be different.

The Steelers won their first game today. And from what I do remember about last year’s season, that’s an improvement. For those of you that don’t know, Tom is president of a Steeler fan club that meets at the Playing Field to watch the games. And they raise money to donate to the Children’s Hospital here in Richmond. Hopefully, it will be a good season.

Well, on Friday we had physical therapy. Harlie got her stander and they made all the adjustments for her. The stander is a piece of equipment that she gets strapped into in a standing position. It forces her to put weight on her legs. It has a tray in front so she can play with toys and there is a basin too, so she can splash her hands in water. I have to say that so far, she doesn't love it. Hopefully, after a few tries, she'll get more comfortable.

We are really enjoying her sitting up. She isn't completely stable yet, but she's learning. She definitely tries to keep from falling over, but her hands aren't that fast yet.

Tomorrow we are getting Harlie's first professional photographs done. Paige Stevens Buchbinder is coming over to our house to take them for us so we don't have to take her out. Paige did our wedding and a bunch of family photos for us. I think she's great. Here's her website: http://www.picturepaiges.com in case you’re interested. It's hard to believe that she's almost one, and these will be her first real photos. She’s such a busy baby!

Well, that’s it for tonight. I’ll let you know how the photo shoot goes. I hope you are all well, and I’ll talk to you later.

Take care,
Christy

Quick Update

Sorry I haven't been so good at updating the website recently. Just been trying to get back in the swing of things. We had PT on Wednesday and will have it again this morning. We had OT yesterday. That went okay, all things considered. No swallowing yet, but only trying to get her used to food in her mouth and making it fun for her for now. No wild and crazy goals yet. She has no notion of hunger, food, etc., so there's no incentive for her. We just have to have a LOT of patience with the oral trials.

I'm still thinking over what the GI doc said. He is recommending a nissen fundoplication (where they take part of the stomach and wrap it around the esophagus to make it "impossible" for her to throw up). Sometimes they come unwrapped, soon after surgery, or years later. He's also recommending a pyloroplasty, which is when they widen the opening from the stomach to the intestines so the food empties faster.

I'm still mulling all this info over. I have a few issues. One is we don't have proof that she's aspirating. And that would be the main reason for doing these procedures. Fear of aspiration due to reflux, need to keep her lungs healthy, etc. Plus, she is so close to being upright most of the day. And that will really help her keep her food down I think. Since babies typically outgrow reflux, if we could wait, we could avoid these surgeries.

But, unfortunately, it's not a simple decision. There are pros and cons, of course. The more food she keeps down, the faster she can gain weight and grow. Plus, the more comfortable she could be. But, they are not surgeries to be taken lightly, and they certainly have their drawbacks for me. It just makes me nervous that if she eats something bad later in life that her body wouldn't be able to get rid of it quickly. Blah, blah, blah.

So, a funny Murphy story: Tom went to go wake him up this morning. Murphy was wearing his Superman pjs. Tom started tapping his bum, saying, "Superman, Superman..." And without stirring, Murphy said, "Daddy, Superman's sleeping". I love his sense of humor.

Well, that's it for now. I hope you are all well!

Take care,
Christy

Sitting up!

Well, we had another busy day. Murphy started his new preschool today. He went right in the class and sat down with no problem whatsoever. I can't tell you how lucky we feel to have such an easy going kid. I guess God gave him to us for a reason, huh?

Then Brandy, me and Harlie rushed down to MCV for an appointment with her nutritionist. Harlie weighed 15 pounds, 1 ounce. Exactly what she weighed on surgery day - August 14th. We decided that the formula she was on just wasn't working. Her vomiting increased significantly. So, we are going to try to put her back on regular formula instead of all this special stuff. We'll see how that goes in the next few days. We were hoping that we could just start Pediasure - but she's no where close to being able to start that. I think she said that Harlie has to be 20 pounds or so. Who knows when that will be!

Then we rushed home for her physical therapy appointment. We were late for that, but Traci is so good to us that she waited. And then Traci sat her up on the floor, and she stayed like that... for a long time! Traci said it's official - she's sitting up! Woohoo!

I think Harlie is starting to feel better. But, she's still on oxygen. So, we'll just have to see what happens there. I keep trying to wean her off, but it isn't working. Hopefully that will change soon.

Picked Murphy up from school and he said he had a good day. That's about it. I hope all your kids had a good first day of school.

Take care,
Christy