Happy Halloween!

I hope you all had a great Halloween. The neighborhood was packed with kids! I think Murphy had a good time. His little legs can only take so much. I tried to get him to go and get more candy, but he just wasn't that motivated. Darn it. He sure looked cute in his farmer costume though. We took more pics, but I'll upload them tomorrow.

Harlie is getting her first molar. Well, I guess I should say it came in. Well, that certainly explains her increased drooling. And, perhaps, the not-so-great oral feeding trials lately. She is doing great in physical therapy, though. She is finally putting weight on her legs. I took some pics and will get them up soon. It was so exciting to see her behind one of those push toys. I had no idea she was ready for that. Traci asked me if we had one that was Murphy's and I ran and got it. I am very hopeful that she'll be walking by the time she turns 2.

Well, tomorrow we have an appointment for both kids to get their flu shots. Then next week Harlie goes to see her eye doctor and surgeon. I am anxious to see how her eyesight is compared to last year at this time.

Well, more later. Thanks for checking in!

Take care,
Christy

Halloween Carnival

On Saturday, we had a neighborhood Halloween festival and then Murphy had his Halloween Carnival at his school. So we got the kids all dressed up and took some pictures. I just couldn't wait till Halloween to post them. 

My neighbors gave Harlie the Click Clack Moo, Cows that Type book for her birthday. Well, Murphy loves it so I convinced him that he wanted to be Farmer Brown so Harlie could be a pig. I figured this is the last year I'll be able to do that. I thought they looked so cute together. 

The parties were fun and Harlie did great. We hardly had to suction her. 

Everything is still going well here. Haven't had much to post, which is a nice change for us. Harlie has definitely mastered the "throwing things off the high chair" skill. She seems to do it with more attitude than I ever remember Murphy having. She is doing great in physical therapy. I really am starting to see a lot of progress. Traci is starting to teach her how to pivot while sitting, sit up on her knees, and crawling. We're still very far from crawling (not sure that she'll ever really do that since she doesn't have the mobility in her neck to look where she's going). But, who knows. Maybe she'll surprise us, as always. 

Well, this will be a quick one because we have to leave soon to go to Mike and Marcy's wedding. Should be fun! 

Take care,
Christy

First Year Stats

So, now that Harlie’s first year is behind us, I thought I would go back and gather some stats. And here they are:

127 days in the hospital (over 4 months)
88 doctor’s appointments (that’s just during the months she was NOT in the hospital – less than 8, which is an average of 3 per week)
7 surgeries
6 trips to the ER (felt like a lot more to tell you the truth)
2 ambulance rides (3 for me since I got a ride to DC before she was born)
1 helicopter ride
6 CT scans
2 Heart Caths
1 Million smiles

What a busy year! Looking back (which I try not to do in too much detail) I can’t believe we survived it. The first few months were definitely the roughest of our lives. And every day I thank God that they are behind us. WooHoo!

So, I finally got around to uploading the photos that Paige took right before Harlie’s birthday. Some of them are at the end of Harlie’s First Year Montage (under My Favorite Links). I think Paige did a fabulous job.

Well, just a short one for tonight.

Take care,
Christy

Nutritionist appointment

Well, we had OT and then we were off to see Anne, Harlie's nutritionist. Anne works with her pulmonologist, so everytime we see her, we see Pulm., too. The Pulm. doc we saw today was not her usual one - instead we saw the doc that we had when Harlie was at MCV for those 8 weeks in April and May. We also saw a resident that was in the PICU during that same time. He was doing his rotation with Pulm. this month. Small world. But nice to see some familiar faces. I liked them both a lot.

Anyway, they weighed her and measured her. I was very disappointed. She only weighed 15.9 pounds, and just last week she weighed 16.1. Not the direction we want to go in. And she wasn't really off her feeds for any large amount of time. Obviously for the surgery, but not enough to account for that difference.

I think that although her work of breathing is less - she still works harder than a healthy baby. And now she is way more active, so she's burning even more calories.

Anne told me not to be too discouraged. Overall, we are still making progress, even though it is SOOOO slow!!!! She gave me a feeding plan. Starting tomorrow, I need to increase her hourly volume. She will be fed for 3 hours, then off for 1 hour. We will repeat this all day. Then go back to continuous for the night. We keep her on this schedule for one week. Hopefully she will tolerate it okay.

Each week, the hourly volume increases and the time on the feeding decreases. It will probably take 6-8 weeks to make the transition to bolus feeds - if she tolerates it, of course.

Oh, Harlie has started to drop all her toys when in the highchair at dinner time. Murphy jumps up and goes and gets them. Before he can get back to his seat, she drops it again. He gets very frustrated. It is very funny. Last night, Harlie picked a toy up and very blatantly dropped it on the floor. Murphy yelled, "Harlie, did you do that on purpose?!" It was so funny. He looked at something today and said, "Mama, that is hysterical!" And he is very tuned in to the weather. He said, "Mama, it sure is cloudy out here." He really cracks me up.

Well, that's it for tonight. Oh, I also uploaded some pics from her last surgery.

Take care,
Christy

Short one

Well, just a quick one tonight. I think the past few weeks have caught up with me and I am feeling pretty exhausted.

So, I decided to cancel the anesthesia meeting for today. I have not completely decided if I will reschedule or cancel the entire thing. I remember reading on the Goldenhar support group that parents would say they were just too tired to go through another procedure. And I remember thinking that was crazy. Now, I completely understand.

Today we had physical therapy. Traci said that she feels that Harlie is definitely making progress. She can almost get into a sitting up position from a laying down position.

Tomorrow we have occupational therapy. Unfortunately with the craziness of the past few days, I have not been able to work with her on her oral feedings. So, hopefully, we haven't lost any ground.

Then after that, we go downtown to see her nutritionist. I love her and am looking forward to hear what she has to say about how Harlie is doing.

Well, that's it. Thanks for checking in and I will write more later and post some photos. I need to post the ones that Paige took and the ones from her last surgery.

Take care,
Christy

Busy week ahead

Well, everything is still going okay here. Harlie is doing well. She doesn't seem to be in any pain. She's still on room air and all's well. She is getting much more active in her sleep and gets tangled in all her cords and tubes. She seems to really want to sleep on her belly, but I think the trach mask gets in her way.

This week is going to be pretty busy. We have an appointment with the anesthesia team in Norfolk tomorrow. That appointment is for them to meet her so they can be prepared for the ABR (auditory brain stem response) test that is scheduled for October 23rd.

Then on Tuesday, we meet with Harlie's nutritionist. I think the plan is to see how we can change from her 21-hour continuous feeding schedule to a more "normal" feeding schedule. A meal is called a bolus feed - and Harlie hasn't had a bolus feeding since... geez. I don't remember. Probably January.

As of right now, we don't have any appointments for Wednesday. Whew.

Then, on Thursday, we go see her cardiologist here at MCV.

On Friday, we have a follow-up appointment with her surgeon in DC so he can take a look and make sure everything is healing fine.

So, we came home from DC on Friday, then we'll have to get back in the car on Monday to go to Norfolk, then back to DC on Friday. So, for that reason I am thinking about cancelling the ABR test and the anesthesia meeting tomorrow. After thinking about it more, I just don't see the hurry in getting the ABR done. And I really think she deserves some time off, having fun, being a baby. I guess I'll sleep on it tonight and make my decision in the morning.

Well, that's about it. Hope all is well.

Take care,
Christy

We're Home!

Ahhhh, home again. Such a good feeling. We got on the road at 1:30 - but hit a ton of traffic. I really don't know how people commute.

Harlie is doing well. I'm sure she's just as happy to be here as I am. Although, the next time we have a hospital stay in DC, it will be much better. The new wing opens in November and it sounds really nice. The cardiac department is moving to the new space, so that will mean that we'll be there at some point.

All the rooms are private, with private baths AND showers!!! (right now I go down the hall to a locker room with some showers) They will all have flat screen tvs, with internet access, and new, more comfortable furniture. I am thrilled about the internet access - and I think it's through the tv. I might just enjoy our next stay. Although, I have to say, I am really starting to get to know a lot of people at the hospital, so it's not that bad, really. It almost feels like a reunion.

Well, that's it for tonight. Thanks for your support!

Take care,
Christy

Still at the hospital

Well, unfortunately they weren't comfortable with discharging us yesterday. I wasn't that surprised. And Harlie was really tired yesterday, slept most of the day and all night. And she had a fever. They said normal reaction to surgery, so nothing to be alarmed about. They gave her some Tylenol and it came down soon after that. So, maybe the trip home would have been too much for her. It's always better if I can make myself believe that I like all the decisions made by the docs.

So, I've been told that they will do rounds on us around 10am and that the team will make the decision then. I can't imagine it would be anything but sending us home.

I think Harlie is really wising up to this hospital stuff. She has cried everytime someone has come in the room. And that is so NOT like her! I'm sure that once I get her home in her familiar surroundings, she'll be happy again.

Well, hopefully the next time I update this site it will be from home. Thank you for all the messages - I appreciate each and every one!!!!

Take care,
Christy

Surgery Update

Hi everyone,

Well, I was finally able to make it to the library. She is out of surgery and is back in her room on the Heart and Kidney Unit. We have gotten to know so many nurses now, that we feel pretty comfortable. Somehow we got lucky and got a private room. Loving that.

Surgery went fine. And her surgeon said that if it were up to him, he would discharge us today. But, it will be up to cardiology and I haven't spoken to anyone yet about that. But I am really hoping that they will let us go tonight. She is already back on room air with sats in the high 80's, which is incredible (incredibly good, I mean). For the past 3 nights in a row she has not needed oxygen. WOW!!!!! I woke up several times last night and peeked at the monitor - 89 sats. Unbelieveable - especially considering she was sleeping, and typically sats drop when you're sleeping.

As far as the surgery goes, things went well, I think. Her muscles appear to work okay and she looks more "normal" there now. He said that we may want to do another surgery in a few years, but we'll cross that bridge then. She'll probably always have some issues in that department, but I think they'll be livable in the grand scheme of things.

I'll write more about it later. I just wanted to give you a quick update. Need to get back to her room just in case cardiology comes by. Doctors always seem to know when you've just stepped out.

Thank you for all your well wishes!!!

Take care,
Christy

Here we go again...

So, tomorrow we go to DC for Harlie's anoplasty. I don't know if I said or not, but it is going to be her 7th surgery. The surgery itself is scheduled for 11am on Thursday. But we need to be at the hospital at 4pm on Wednesday.

Although I am looking forward to getting this issue addressed, and crossed off her list, I am not looking forward to being back in the hospital. I absolutely hate the search for a vein for an IV.

They take that blue tourniquet and tie it around each limb, one at a time, searching for the best vein. Then, after searching both arms and legs, they go back to the one that they thought was the best. I feel so bad for the person that is the "best" at this job. Because then they get called for every hard stick. And now that Harlie is getting older, she really looks at the person who is inflicting the pain.

Well, enough of that. Oh, I forgot to tell you that during our car trip up to DC this past weekend, Murphy said, "Daddy, is it partly cloudy?" Clearly, they are learning about the weather at school. It was so funny.

Well, I won't be able to update the site Wednesday night. So, if there's anything to report on, I'll have Tom do it. Then on Thursday, I'll update the site after she goes into surgery. Well, wish us luck!

Thanks and take care,
Christy