Harlie as a Mama

Harlie is proving to be very maternal. She just loves Cooper and wants to help in his care. Here are some funny photos to prove it.

I can already tell that this one is going to be one of my all-time favorite pictures.

Obviously, she likes to feed him. I was really hoping that seeing him learn to eat solids would help her learn to eat. Not really working out that way so far.

She even likes to pretend to feed him. I'm not so sure he likes it very much... Yeah, this one will be a favorite, too. I just love the looks on their faces!

She's recently learned how to put her socks on all by herself. So, she tried to put his socks on him. He never stops moving so she got frustrated and let me finish the job.

When we went to Norfolk recently to meet with her plastic surgeon, while in the car, Cooper started crying. Harlie wanted him...

And if she can't have Cooper, she goes to get her baby doll. As I walk by and find her baby in all different places, I go and get my camera. Here's what I see:

I guess she thinks she's going somewhere because her baby's all ready to go and she's blowing kisses.

Don't ask me why the sock monkey-in-the-box...

That's it. For now. I'm sure she'll give me many more opportunities to take more funny photos.

Take care,

Christy

Fevers, still.

So, Harlie still has a fever. And this morning, she had some drainage coming out of her right ear. I was pretty excited about that, because that would give us a source of the fever. And even though her pediatrician just looked in that ear on Monday, as those experienced with chronic ear infections know, it only takes a few hours for "good" ears to go "bad."

So, since I already had an appointment for Cooper's pre-op, I asked if I could bring Harlie, too. Her ear looks pretty yucky. And then her doc brought up a great point (that I completely forgot about!) that her left ear (the one she's missing - with no ear canal) could be infected, and we would never know it. The second he said that - I remembered her ENT in DC saying that this might be a problem. Even though she has a tube in her right ear - her left inner ear could be infected - since there is no way for stuff to drain out on that side. Ugh!

But, in this case, I'm excited because that would give us a source of infection. The unknown is far worse in my opinion. And, quite frankly, I was/am getting worried. Last night she was breathing so hard and fast and her fever was 102.6. But I know that for every degree your temp is up you breathe like 4 times more per minute (or something like that). So, I was hoping that was the case and just watched her closely. And today, before her appointment, her temp was 103.1.

Anyway, she's on meds now and hopefully she will respond and the fever will come down and stay down for good. I just want her to feel better. And soon.

Thanks for checking in,
Christy

Fever issues

I spoke to her doctor today about a new heart cath date. After much discussion, we finally settled on Tuesday, March 17th. I really like this doctor and am very thankful he was willing to accommodate our schedule. He first wanted a date further out - too close to her scheduled heart surgery. Then we talked about the 16th - but that's the day Cooper gets his tubes. Too bad they couldn't be at the same hospital - I just might have been able to pull that off! Not really, but anyway... I was trying to figure out how I could make the 16th work, but when I told him about Cooper, he said, no way - you shouldn't have to do all that, I'll work her in on the 17th. How great is that?

So, the game plan is that we'll try for Tuesday. If she isn't well enough by then for the cath, then we'll have to scrap the whole plan and reschedule her heart surgery. I certainly don't want to go into her heart surgery limping if you know what I mean. But to be honest, I will be very surprised if it works out as it is scheduled right now. Last night she had a fever of 102.6 and today it was 103. With no other symptoms. Other than an absolute crazy amount of secretions. It's really disgusting around here. I know that only the moms of trached children, or my nurses can truly understand just how much is a crazy amount. For those of you that don't know - I would love to show you a video - but I don't think you'd ever come back to my blog. So, I'll spare you that kind of detail. Just trust me that it really shouldn't be this gross for a little girl. Anyway, her pediatrician says it's probably viral, so there really isn't anything we can do.

So, we'll just see how she does over the next few days and hope for wellness REAL soon!

Thanks,
Christy

Heart Cath a No Go...

Harlie

No heart cath today. She spiked a fever while there. We got there at 7am and got all checked in. Harlie was happy and fine until we were taken back into a room. Once she saw the red, metal crib, she knew that all was NOT good. I can't even say that she threw a fit. Because she didn't. She never does. She just cries, but then gives in, and ends up cooperating as best she can. It killed me - and Brandy. The whole time she kept on signing "let's go home."

I guess this is where it gets harder. And who could blame her? She doesn't know if she's in for a quick one (ear tube or bronch) or if she'll wake up with her face all swollen and her jaw wired shut! Even though she was crying, when the nurse went to put on her hospital bracelet, Harlie just held out her arm and let her do it. Ugh. She couldn't get a blood pressure - and she tried 3 times. After the 3rd time I told her she could just get one once Harlie was under. She said that she needed to get a baseline, but with Harlie as upset as she was, she wasn't going to get one, period.

Then the nurse said she needed to get an IV started. I said, "No. Not without giving her some drugs to calm her down first." The nurse said she would get the doctor. Then she came back with another a nurse and told me that he said they needed to get an IV started. I said, "Fine. As long as you give her something first." I stated my reasons:

1. She is a HARD stick. It will take several sticks before you get one. All the "experts" have had the same experience. Trust me. We've been through this more times than I want to think about!
2. It will take several of you to hold her down.
3. This is not a one time visit for her. I have to bring her back and make her go through it again in 3 weeks. Then again in the fall, then again in the winter. You're not torturing my child unless it is an emergency.
4. There are drugs that can make this experience better for her. Why NOT use them???? It's not like she's never been exposed to them before!

They again said I would have to speak to the doctor. I said I would be MORE than happy to. And, really, I was not mean, or rude. I promise. I've learned that you get a whole lot farther if you're pleasant and professional. The nurse came back again and said that they were going to give her something. Good. Thank you very much.

However, they wanted to get another temp on her because when we first got there her temp was 100.2. But she was upset, so we thought that was the cause. But when they took it again (when she had been calm for a while) it was up to 101.3. So the doctor said no cath today. It is too risky that whatever is causing the fever could change the pressures or something during her cath, which would give them inaccurate results. They know the deal with her surgery (now just 3 weeks away!) so hopefully they can get her rescheduled in time. If not, we'll just deal with it. It's not nearly the issue it was with her lung surgery (there were times I was so afraid she wouldn't make it to the surgery). So, I can handle it. OH! And was I ever glad that I didn't let them try to get an IV started!

But, oh boy, you wouldn't believe how happy Harlie was when I told her we were going home. After I got her dressed she ran to her stroller and climbed on in. Maybe this dry run will make her not so afraid the next time...

Tom

So, a while ago, Tom's shoulder started hurting. He has a hard time with mobility of his arm and is having a lot of trouble lifting the kids. So a few weeks ago he started physical therapy. While it helped improve his mobility, it did nothing to improve the pain. So, he went back to the doctor today. He will have an MRI on Thursday and then surgery within the next couple of weeks. At this point, I seriously don't know how we're going to fit it all in!

Cooper

Oh, and I forgot to mention in yesterday's post that my 5-month old and my 2-year old now wear the same size diaper. Size 3. Nice.

Take care,
Christy

Heart cath tomorrow

From my lack of posting, one would think I don't have anything to say. But I have SO much to say! But if I said it all in one post, it would be forever long and I don't have the time to write that much at one sitting, and I'm sure you don't have time to read it all in one sitting. So, I'll just start with the basics...

Heart Cath

Tomorrow morning (Tuesday) Harlie has her pre-op heart cath at MCV. This will be her 4th cath so far. I've been a bit worried because she hasn't been feeling well. And at 3am today she had a fever of 101.8. So, I went on ahead and took her to see her pediatrician so he could help me decide if she should have the cath tomorrow. Since this is a pre-op cath, it needs to be done within a certain time frame and with her surgery scheduled for April 2nd, we don't have a big window for re-scheduling. Anyway, she's fine. No ear infection, no more fevers, and she seemed okay today overall. She definitely has a ton of secretions, but I think that's pretty typical for this time of year. There's always something going around so I'm hoping that she'll clear up soon. I know she is so tired of her coughing spells. Anyway, hopefully the cath will be pretty routine with no surprises. Keep your fingers crossed!

Speech Therapy

Due to the snow last weekend, her usual Monday speech therapy session was rescheduled for this past Friday. So, we had ST on Friday and again today for her normal Monday session. Friday's was pretty exhausting for me. Because her secretions are out of control, there is no way she can handle wearing her speaking valve, so we've been focusing on sign language. Michelle gets out a bunch of toys (like a baby doll with a bag full of accessories, Mister Potato Head, or books, etc.) and while she's playing with Harlie, she teaches her new signs, sees what Harlie already knows and how to put them all together.

The whole time I'm sitting there watching, I'm willing Harlie to show her what she knows. But just like a typical toddler, she would just sit there and stare at her. It is so frustrating! I would tell Michelle, "oh yeah, she knows that one, and uses it all the time at home." Then... nothing! Ugh. Plus, I'm learning new signs, too. So, after an hour of that, both Harlie and I are spent. Harlie goes home and takes a nap and I have to go on to the next item on my to-do list. But, after having two sessions so close together, I think Harlie is getting more comfortable there and with Michelle. But, it's a lot of hard work in an hour and near the end Harlie starts signing, "let's go." I can't tell you how thankful I am to be able to communicate with her as much as we do. Don't get me wrong, there are still plenty of times that I don't know what she's trying to say - but those times just make me more more thankful for the times I can understand her.

Cooper

I can't remember how much I've talked about Cooper lately, so I'll give a little update on him. He had his 5-month check-up last week. He weighs 17 pounds, and is 26.75 inches long. Both put him in the 75th percentile. It's crazy to me as both Murphy and Harlie have NEVER been that high on the charts. He had 5 ear infections before he turned 5 months old, so he will get his tubes next Monday (March 16th). He's been going through a growth spurt for the last couple of weeks - waking up in the middle of the night to eat. Ugh. He hasn't done that since he was 2 months old. Hopefully he's almost done with that. And our night nurse has been out sick for the past several weeks, so between Cooper and Harlie's needs at night - we are TIRED. Hopefully things will get back to normal soon, so I can sleep again. I miss it. Terribly.

Well, that's enough of an update for tonight. We have a very early morning tomorrow, so I must get some rest while I can.

Take care,
Christy

Harlie says Mama!

While I have a quick second, I thought I would share this video with you. It is a really good one I think, and it makes me very happy. As you might remember, Beth was our speech therapist and we loved her. Her last day with us was February 19th and this video was taken that day. I find that I am getting emotional very easily lately. I'm sure it has everything to do with Harlie's upcoming heart surgery - now just under one month away. So, when I saw this today, it made me choke up a bit. Sometimes when you're in the moment, it is hard to really soak it in. So, Beth, if you're reading this - THANK YOU!!!

Oh, and by the way, Beth is covering Harlie's trach so she can make a clearer sound. The trach makes air bypass the vocal cords, thus no sound is heard. But, if she can't exhale air through the trach (because it is blocked) then air is forced to be exhaled the normal way - past the vocal cords and out the mouth and nose, producing sound.

Snow!!!

Finally! A good snow day! According to our measurements on our back deck, we got 7 inches! Wow!



Murphy had a blast. He stayed outside for most of the day. The cold didn't seem to bother him at all. But, that is probably because my friend Jennifer, hooked us up with some great winter gear. We didn't have anything snow-friendly. So, thanks Jennifer!

Ahhh...undisturbed snow. So peaceful.











We took Murphy sledding at the elementary school down the street. It was a great hill and I couldn't believe that Murphy wasn't scared. He did great! The hill got really busy and in Murphy's climb back up the hill, he moved to miss one sledder and then got nailed by another. He ended up riding down the hill on top of the sledder that nailed him. It was hilarious and luckily, he wasn't hurt or upset. He really hung in there with the bigger kids.

Harlie didn't like it. At all. And after all the time and effort to get her dressed, she was outside for about 2 seconds.

Cole and Murphy playing.

Take care,

Christy