Tuesday, July 29, 2008

Last summer memories...

One week from today and Harlie's wires will be OUT!!! WooHoo!!! I am SO excited! It is hard to believe that 8 weeks have already gone by. And it really wasn't that bad. Just the first couple of weeks and then we all seemed fine. Harlie recovered faster than us, that's for sure.

Murphy's swimming lessons are going great! It was a rough beginning, but I think he finally realized that he CAN do this. Today was his 6th day and he swam with his head under water from one side to the middle of the pool, turned over and got some air, and then turned back underwater and swam the rest of the way to the other side. I was so amazed. And the instructor threw a toy in the pool and he had to swim to the bottom (in shallow water) and grab it and bring it to the surface. I cannot believe how fast he has progressed! I took some video today and will take some the next two days, and then I'll post it so you can see. It is very hard to believe how long he can hold his breath. I certainly did not expect that. He said he is so proud of himself! I love it!

Tonight he asked me with some impatience, "when is the baby coming out already?" It is hard to believe that I still have 9 weeks left. As I've been told many times (by both strangers and loved ones) I am quite large. Paige (my favorite photographer) came last night to take some photos of the kids and my belly. I am excited to see how they turned out. Hopefully I'll be able to post some on here for you. You should check out her site, http://www.picturepaiges.com/ when you get a chance. I just love that I can insert links into my entries now!

So, lately, I've been thinking a lot about how far we've come with Harlie. At this time one year ago, there were so many times I was seriously afraid she wouldn't make it. She was working so hard to breathe with her respirations often over 100 - even at rest! That's taking 100 breaths in one minute, which is a lot! We visited the ER many times, and we all (the docs included) realized that there was nothing anyone could do except to remove her bad lung lobes (the upper and lower right lobes). I remember one day when I was scared and I realized that - for us - calling 911, would not help. I remember thinking how lonely that felt. What a crazy realization! So many times I wondered how I was going to get through the day feeling so scared.
And now, a year later, things are SO much better! Here are some pics from this time last year. Here's Traci, her physical therapist, showing us that she's not helping Harlie sit up. She lasted a few seconds before falling over. By her first birthday (September 25th) she was sitting up completely on her own. Oh, these pics were taken on July 20, 2007. She was still on oxygen 24/7 then. And she weighed 14 pounds. She weighs 22 pounds now.

And here's a short video of her in the hospital after her 2nd heart surgery. Granted, this was in April, but it does show you what it looks like to see her breathe really fast. And it only got worse until August 14th - the day of her lung surgery. What a turning point that was for her!!! There's been no stopping her since! And how cool is it that I can do this (insert a video into my blog, I mean)?

Well, that's it for tonight. I really must get some sleep. Oh, and thanks for the supportive comments about my blog! So far, it looks like most of you like it. Kristie, that is a real bummer that you can't view it at work. I'll probably do some dual posting for a little while. But these comments about the photos and/or videos won't make much sense in Babysites. Oh, and I uploaded some more pics under the vacation album. There's still more to upload, but there's only so much time in a day...
Take care,

Sunday, July 27, 2008

Check out my new Blog

So, about this project I’ve been working on... For a while now, I have thought about transitioning over to a more “official” blog. I have been journaling on Babysites since a few days after Harlie was born. At that time, it was the only thing I knew of that could get the information out to my friends and family while we were still at the hospital. At that time, I had NO idea that the site would generate so much interest, or that I would still be journaling almost two years later.

And after almost two years (SO hard to believe), I must admit that I am getting a little bored with Babysites. There’s just not enough creative outlet for me. And I wonder if I can be more creative – what else will I say? I just think it might be time for me to have a little more freedom with my thoughts (scary, I know). But, I would like to have your input before I make the change. Here are some pros and cons:

Babysite Pros:
  1. Easy to navigate around.
  2. Easy photo album upload/organization.
  3. Seems easy for my visitors to leave comments on the Guestbook.

Babysite Cons:

  1. Kind of boring to work in for me now.
  2. It will only allow for one journal entry per day (which is a pain fairly often – especially when she’s in the hospital and I want to update several times in one day or when I want to update in the morning and that same night).
  3. The guestbook takes forever to come up because it is such a large file now.
  4. There is a yearly member fee and then more money to add memory/space.
  5. I’m concerned about the storage space in the long term (and the cost).
  6. Can’t search past entries for keywords.
  7. Can’t put links in my entries, which is kind of a pain when I’m trying to describe something.

Blog Pros:

  1. Gives me a little more creative space (although I’ll have to learn a lot more).
  2. I like that I can upload photos right into my journal entry (and that it is easy to do). This will really help if I’m trying to describe something (like her mickey button).
  3. I like that I can insert links right into my entry, so all you’d have to do is click on a word (also helpful when I’m trying to describe something – especially something medical).
  4. It’s free and no worries when it comes to storage space.
  5. I like that I can create “labels” in my entries so I can go back and search for certain topics (and you can, too).
  6. You can subscribe to my blog and get notified when I add an entry so you don’t have to keep checking back (I just don't know how to do this yet).
  7. Comments will be attached to an entry. I’m not really sure if you would consider this a Pro or a Con.

Blog Cons:

  1. Some might find navigation confusing.
  2. Still trying to find a way to upload photo ALBUMS. I know this is possible, but still looking for a more user-friendly method.
  3. Comments will be attached to an entry. And I’m not so sure about the user-friendliness of it. You’ll have to be the judge of this.

Before I wrote this entry, I was really undecided on making this change. But, as I started to write the above Pros vs. Cons, well, I guess it’s pretty clear what I should do. But, I want to make sure that this change works for all you “Harlie Fans” out there.

So, check out my blog when you get a chance and let me know what you think. I would really appreciate your feedback. You can just put it on the guestbook, or Click here to contact me and it will send me an e-mail. You can post your comment on either site, whichever you prefer. Also, if you have questions, that would be great, too.

Now, keep in mind that at this time, I think my new blog looks pretty boring. But, like I said, I still have a lot to learn. And luckily, I have SO much extra time on my hands!!! Eh, soon I’ll be up ‘round the clock anyway… I think I might have lost my mind...

Anyway, thank you for your support and future comments!!! And thanks Kim for spending some time with me today teaching me some things about the blog. You were a HUGE help!!! Oh – and if no one comments – I’m going on strike. So, please don’t be shy!!!



PS - Check out the blog entry below for new pics!

Friday, July 25, 2008

Just playing

Not much happened today. Brandy had the day off and Murphy was at school, so it was a great, quality day for Harlie and I.

I just wanted to play with this new blog, so I thought I'd take some photos to upload into the blog.

So that's it for tonight!

Thursday, July 24, 2008

Speech therapy and feeding stuff...

We had speech therapy today. That went great. I have been using the PECS and Harlie seems to be doing well with it. The biggest challenge is ME and fitting it into our day. It seems that there's just never enough time... But, that's certainly nothing new, and it's something I just have to make happen. Harlie's doing great with learning new words and building her vocabulary. Now we have to work on teaching her to put all the words together in sentences. So, instead of her just signing "book", we have to teach her to say "I want a book". I think she's ready for it.

Oh, last night after dinner, Harlie started to clear the plates with Murphy (still cracks me up) and I passed her a bowl of broccoli. She looked at it and then did the sign for "grass". It is so funny how kids look at things. I suppose broccoli does kind of look like grass.

Yesterday we had a meeting with our occupational therapist, Allison. Unfortunately, she is transitioning out of "natural environment" and she will be in the feeding clinic full-time (which means she won't be coming to our house for feeding therapy anymore). Through our county's Early Intervention Program, the therapists come to our home for the first 3 years of Harlie's life. After she turns 3, I will have to take her to their respective clinics for therapies.

Anyway, luckily for us, our speech therapist, Beth will be taking over Harlie's feeding therapy. Which is great because Harlie already knows her and is comfortable with her. So, after the wires come out, Beth will start working with her to see what she can do. We won't be able to just start giving her food or liquids. It isn't that easy, unfortunately. Harlie will have to have a swallow study to make sure that if she can swallow, that it is safe and she doesn't aspirate (food/liquids go into her lungs instead of down her esophagus). This will be very tricky, because odds are she won't swallow for the study considering she hasn't in such a long time. Because of her lack of swallowing and eating, all those muscles that make that happen are very weak, which makes aspiration more likely. Anyway, this is something that I knew would be very difficult and I am prepared. But, I am also very hopeful in that she seems to want to, so we are hoping that makes a positive difference.

After speech therapy, I went to get a haircut. My last haircut was in January. Yes, January. Seriously people, that's pathetic. I have never gone that long without a haircut before. Geez, I really must start to make more time for myself...

After dinner we took the kids outside so Murphy could ride his bike (he actually likes to now, which is fabulous) and so Harlie could walk a little in the street. I am SO thrilled! She walked the farthest down the street than she ever has!!! By three houses! And I really think she would have walked farther, but she was distracted by Murphy and Tom riding their bikes back toward the house. Then after we got back to the house, she wanted on Murphy's bike. That girl. Walking is such a challenge for her but she wants to ride a bike! I finally went on ahead and put her on it and walked holding her safely on it, and she loved it. Way more dangerous than walking independently! Oh well.

Oh, and Kristen, thanks for the kick in the butt to get some photos up. I just uploaded a few - so more will be coming. Harlie is happier than she looks in the photos of her outside. Her eyes are incredibly sensitive to the sunlight, even in the shade, so she always looks like she's miserable outside.

One last thing, I am working on a project and I am going to be asking for your input. Hopefully I'll be able to post the details on Monday. So, keep a look out!

As always, thank you for your support!!!

Take care,

Tuesday, July 22, 2008

Fun Day

We had a great day today. Murphy doesn't go to school on Tuesdays or Thursdays, and he has been asking to go to the library. I have never taken him - he's talking about the library at his school. So, Brandy and I took Harlie and Murphy to the library right down the street. We just happened to get there right as they were starting "story time". So we went on in. Harlie seemed to really like it. The theme was "Monsters", so the guy reading the story starts. He was pretty animated and the story mentioned something about the monster's scary ears. So, the guy says, "Did everyone bring their ears today"? Okay, seriously, how could I not? So I whisper to Brandy - "No, we left one at home". hehe. We had a good laugh. I believe a sense of humor is essential to surviving this life - and showing Harlie that is one of my main goals.

Anyway, after story time, we spent some time looking at books and we headed out. The whole time we were there Harlie walked around in her walker just fine. I was so pleased! And the funniest thing happened - a woman came up to me and told me that she reads my blog! I was so surprised! It was so nice to meet her and say "thank you" in person. I write it, but I don't think anyone realizes how much I appreciate the support. Anyway, thanks for introducing yourself to me, Beth!

Then after we got in the car, Brandy told me that the lady that was helping me with the books told her that she remembered us from the last time we were there (which was MONTHS ago). We (Brandy, Harlie and I) went there with my friend, Jennifer (Harlie's MCV PICU nurse) and her daughter. Anyway, I'm not sure what it means that we were there ONCE a long time ago and she remembers us. I guess we don't blend in all that well anymore.

So, after the library, we headed on over to the mall to get Harlie some new shoes. Since she did so great walking at the library, we thought we'd give it another go. She did great! She walked all the way with no problems. I will say that we were at a different mall than the last time and it was early still, so it wasn't too crowded. We got her some shoes and let her wear them home. She was so funny looking at her feet and new shoes.

And she walked most of the way back to the car. She did the best she has done so far - hands down. That's definitely the most she has walked in one day. Hopefully, it will just get better from here on out.

Well, I have to say it... TWO weeks from today and her wires will be OUT!!! I just can't wait! That's it for tonight. Talk to you later!

Take care,

Monday, July 21, 2008

PECS and other stuff...

We had speech therapy last week and one of the tasks Beth gave me is to put some of Harlie's toys up and out of her reach. So, when she wants one, she has to use the PECS (Picture Exchange Communication System) to tell me. So I selected the toys that correspond to pictures we have and put those pictures on one page. Now if she wants one, she just takes the picture off the page and hands it to me. I worked with her today on it, and she did just great. I really feel like she "gets" it. She really amazes me.

Another task she gave me was to try to incorporate the PECS into our normal day - not just to use it with asking for specific toys. This might sound easy, but it isn't. I know it is very important, but sometimes it feels like just another "thing" I have to do. Sounds negative, but it's really just a time and energy (lack thereof) thing. But I tried working on that tonight and she did great. I used the pictures for going upstairs, bath, shorts, shirts (for putting on her pjs), book (she always asks for a book when she comes out of the bath), diaper, crib and sleep. She did great.

In fact, I am so excited about this... I put her on the floor and told her she could go and get a book. I put the PECS book down with the pictures on the front page and walked away to do something. Harlie stood at the chair with the PECS book and found the picture for "book" and handed it to me. I didn't even ask her to do that - so it is very clear that she completely understands the concept! I can't wait to tell Beth about that.

So, we are still battling her issue with the HME. Today she completely cracked me up (okay, that happens every day). We looked at her and she didn't have it on and Brandy said to her, "Harlie, where's your HME"? And she started looking all around for it! It's almost as if she is saying "Oh! It's off? Huh, where did that thing go"? And the times that she does find it (as I said before, she hides it so finding it sometimes takes a while) she will put it back on and smile. At dinner tonight she took it off and handed it to me. I mean, how blatant is that??? Scolding her for removing it does nothing (obviously). I've tried. Tonight, after she took it off (and I say no, of course) I took away the toy she was playing with as punishment. She didn't care. She just started smiling at Murphy. Nothing seems to bother her. I have a feeling that discipline will be one of our biggest challenges... Great.

Oh, last night as I was getting the kids ready for bed, they started playing in Harlie's closet (there's a toy basket in there) and Harlie found a pair of shoes that she can't wear because of her braces (plus they are still a little too big). Anyway, she signed "shoes" and wanted to put them on. Well, Murphy saw her and went over and helped her. He put the right shoe on the right foot, undid the straps, put them on and redid the straps. It was so funny. And it was so nice to see her doing a normal, toddler, girly thing - walking around in funny shoes. I had no idea how helpful he would be at 4 years old. He will even tell me when Harlie needs to be suctioned. They are too funny.

Oh, Murphy had his first swimming lesson with the Morgan School today. It went really well. I dropped him off and met with the instructor for a few minutes before leaving his sight. He was completely fine and got right in the pool with her and told me bye and went on about his business like it was nothing. When I came back to get him 30 minutes later the instructor had him show me what he learned. She put him under the water and gave him a little push toward the wall and he had to get himself the rest of the way (while staying underwater) to the wall before he could get his head up. I was a nervous wreck because I had no idea he could hold his breath that long, but he did great! He just came up and acted like it was nothing! Then she had him float on his back for 5 seconds. I was so impressed that much was accomplished in just 30 minutes on the first day! He goes everyday until Thursday, and then starts again on Monday through Thursday of next week and that's it. He said he wasn't scared and that he was proud of himself. So, I'm excited about that.

Well, that's enough rambling for tonight. Talk to you later!

Take care,

Sunday, July 20, 2008

My Dad

My Dad

So, the week before vacation my dad had some issues with his heart. They did this new fancy test, which was similar to a CT scan, and the test revealed that one of his main arteries was 90% blocked. Due to the symptoms he was having and the pictures from this test, the doctor said that he was very lucky. He believed that he would have had a heart attack within days if they hadn't found it then. So, they admitted him to the hospital. They had to take him off his normal blood thinner meds, and put him on an alternative one through an IV. It took 4 days for his body to make the change and to be safe enough to do the procedure to give him a stent to bypass the blockage. One of the major risks was a stroke, so they had to keep him in the hospital to make sure he was okay during the transition.

So, my mom and dad missed the first few days of vacation. But they did the procedure on Monday and discharged him on Tuesday, so they came up that afternoon. I know the 4 days in the hospital wasn't fun for him, but he is all better now. We all feel like he was very lucky and we're really happy about that.

Baby #3

Also, on Thursday I took my glucose test (for gestational diabetes) for Baby #3. I was a little concerned due to the doctor telling us that the baby is big. But, I am happy to report that the nurse called and she said that everything is normal. So, no worries there, which is great.


Harlie is doing well. We're making some progress with her walking. Well, sort of. I can hold just one of her hands and she'll walk beside me for a short distance. She's still a bit uncomfortable doing it, but at least she WILL do it so I'm happy about that. She used to only walk like that if she knew her destination and was comfortable with that distance. That distance has increased, so I have high hopes that it will continue to improve. Now I just make her walk everywhere I can vs. picking her up and carrying her.

After her jaw surgery, I tried getting her to wear an HME ("heat and moisture exchange" - a barrel shaped thing that goes over her trach that heats and moisturizes the air she breathes). We have tried to get her to wear one but she just constantly takes it off. We finally gave up. Well, after her surgery I tried again, thinking that having a chin would make it more comfortable for her to wear one. Well, it worked, and I was really excited about it. The reason why is because when she wore one, I noticed a big improvement. Her secretions were thinner, which allowed her to cough them up on her own, which meant less suctioning (woo hoo!). Plus, by the end of the day, her trach would be so gunked up (when she didn't wear one) that I would have to use saline to clean it out. Just made me a little worrisome about potential plugs to her airway. And I didn't have to do that when she wore an HME. Well, I don't know what has gotten into her, but she will NOT wear one now! It is so frustrating. She takes it off and hides it in her toys. I have tried everything, and she does not care - she will take it off the second I look away. Ugh.

Well, that's it for today. Hopefully I'll be able to go through our vacation pics soon and get them uploaded.

Talk to you soon!

Tuesday, July 15, 2008

Baby Three Update

So, we had another ultrasound this morning (Tuesday). It went very well. My amniotic fluid level is completely normal, which I am thrilled about. That was a major issue with Harlie, because she couldn’t swallow (didn’t realize that at the time). So, it makes me feel so much better to “know” that this baby is most likely swallowing like he/she should.

The doctor tried to look at both ears – just to make sure they are there – but the baby would not cooperate. He was only able to see the right ear, which appeared to be fine.

The big news is that this baby is BIG (well for me, anyway). We are in unchartered territory here. He said that he is estimating that this baby weighs 3 pounds and 10 ounces – already!!!! Just to give you some perspective – my friend Marcy had her baby at 33 weeks and he weighed 3 pounds, 10 ounces. I am only 29 weeks now. Uh oh!!! He said that the baby is in the 76th percentile. WOW! None of my children have ever been over 50 at any point in their entire lives!!!!

Tom and I joked earlier in the pregnancy that I would be late delivering (since I was early with both Murphy and Harlie) and I would have a 10 pounder (both Murphy and Harlie were 5 pounds). The doctor said that by his estimation, if I deliver at 39 weeks the baby would weigh about 9 pounds!!! YIKES!

Of course, right after this, he asked me if I’ve had my diabetes test yet. Nope. That is scheduled for Thursday morning. So he said he’ll want to see those results and then speak with my OB to see if she wants another ultrasound later. Sometimes a big baby can indicate gestational diabetes, so we just need to rule that out.

I saw my OB yesterday (Monday) and everything went okay there. As I was leaving I scheduled the rest of my OB appointments for the rest of the pregnancy. That felt kind of weird and was extremely challenging. My calendar is so crazy for someone who doesn’t work (outside the home, I should say), or have kids enrolled in extra-curricular activities!

Well, I have more to write about and pics to download still, but another day has passed and it is late again. I’ll have to save the rest for another day…

Take care,

Monday, July 14, 2008

We're baaack!

Well, we are back from vacation. We had a great time. Murphy did great in the water. I am very thankful to have all my wonderful nieces and nephews to help me with him. They really helped make him feel comfortable in the water.

Harlie did great, too. She had plenty of people to give her some attention, that’s for sure. She played very well with everyone and quickly learned what made people happy. Once she realized what one person liked, she would do that for them when they came around. It was very funny. But despite how comfortable she was playing with other people, she still wouldn’t let anyone else pick her up. Finally, on Saturday (our last full day there) she let my Mom pick her up. I definitely think this last surgery did her in as far as that goes. She’s just so leery of everyone. Makes me a little sad, really. Hopefully that will get better. I’m sure it will eventually, I just hope sooner rather than later.

I haven’t had a chance to download all the pictures yet. Hopefully I’ll get to do that in the next day or so.

Tomorrow (Tuesday) is a big day. It marks three weeks to go till Harlie’s wires comes out!!! Can you believe it??? Just three more weeks!!!! The past six weeks have flown by, thankfully.

We also have another ultrasound for Baby Three. Hopefully it will be our last one. If all goes well, I don’t think we’ll need to have anymore. Well, that’s it for tonight. I’ll have more to say later, when I’ve gotten a chance to catch up a bit.

Take care,

Sunday, July 6, 2008

Going on Vacation!

I hope you all had a Happy 4th. Not too much has been going on lately with Harlie. The last two weeks we’ve been getting adjusted to Murphy’s summer school schedule. He only goes Mondays, Wednesdays and Fridays now, so he’s home Tuesdays and Thursdays. Brandy usually has off on Fridays, so between those two factors, I’ve been really busy. Murphy definitely had a hard time adjusting to being home and Tom NOT being home. He kept on thinking whatever day he was home was a weekend.

So, the other night we had dinner, and we started to clear the table. We’ve given Murphy the chore of clearing the table (plates, etc). Well, it didn’t take long for Harlie to watch and want to help. So she started sticking her arms out, like she was asking for us to give her a plate. Curious, we did. And she took the plate and gave it to Murphy to carry into the kitchen. It was so cute! She is always so proud of herself when she does something like that. Anyway, so that’s our new routine now. We give the plates to Harlie, who gives them to Murphy, who carries them into the kitchen. And she’s not very patient. As soon as our plates look empty, she starts holding her arms out.

Well, the other night I left the table a little early and the three of them finished “cleaning up”. The last thing on the table was Murphy’s cup of milk (Murphy and Harlie sit across from each other). When I came back through the dining room, Harlie had grabbed the tablecloth and pulled it toward her until Murphy’s cup of milk was within her grasp. Seriously, how stinking smart is that??? I got there just in time to see her pick it up and pour it “into” her mouth!!! She wants to eat and drink so bad! I am really hoping that means that teaching her will be easier, but we’ll just have to see.

I can’t wait to tell my OT, Allison, about this, though. She has warned me that transitioning her over to oral feeds (and teaching her how to swallow and handle foods in her mouth) can take a lot of time. I really am completely prepared for a long road. If she is a willing participant, I will be happy. I am totally fine with her tube feeding and I actually think it is a really great thing when it comes to giving her meds. So, it’s not like I hate it and want it gone yesterday. That’s more of a trach thing. haha

She also took a piece of popcorn and brought it to her mouth and then laughed hysterically. She thinks it is so funny to pretend to eat.

So, the weekend after we brought Harlie home from her jaw reconstruction, there was a Trach Conference in Cincinnati, Ohio. I wish the timing could have been better so that we could have gone. I would have loved to have met all my trach friends from my support group online. I really would not have survived this journey without them.

Well, one of the moms who organizes this event, put together a video. I added the link to My Favorite Sites page. So, if you have a few minutes, you should take a look (we’re in it). I find it very moving.

Well this will be my last entry for a whole week! We are going on VACATION!!! This is our first one since Harlie came along. My whole family is going and we are all staying in one big house at Lake Anna. I don’t know what we (Harlie and I) are going to do for a week with no therapies, no phone calls, no calendar, no doctor’s appointments… WOW! Hopefully I’ll have some good pictures for you when I get back.

As always, thank you for checking in and I hope you all have a great week. I’ll probably have lots of reading material for you when I get back!

Take care,

PS - I forgot to tell you that Mike and Marcy brought their baby home after just 2 weeks in the NICU (he was born 7 weeks early). He is doing great and he is very cute - and tiny!

Hardware Removal Day

I'll talk about pre-op day first, then I'll blog about today... Yesterday we did the whole drive through testing thing.  That wa...