Another first...

I hope you all had a nice Memorial Day weekend. Sorry I haven’t updated in a few days. Things have been fairly boring around here (which is wonderful) so there really hasn’t been much for me to say.

Today we had our follow-up appointment with Dr. Lanning (the surgeon who did Harlie’s nissen). That went well. Nothing really to do but check out the incisions (which look great) and see if I had any questions or concerns (which I didn’t). So far, so good. It’s been two weeks now with no vomiting and life is SO much better! She stays in one outfit all day long and we go through WAY less bibs. Laundry is a lot less, which is also great, of course. And getting to an appointment now is way less stressful. It used to be that we were walking out the door and she would throw up all over, and we’d have to stop and change her clothes. Now we just get up and go.

On our way to our appointment at MCV, we stopped at Babies R Us to get some gates for the stairs. Yes, Harlie is a sneaky one and can, in fact, climb stairs all by herself now.

It was the first time I let her walk in a store with her walker. I am not ready to do that with just me and Harlie. It definitely takes two adults to go somewhere with her in the walker. No doubt Harlie will tire out and refuse to walk. There is no way I can carry the diaper bag, suction machine (weighs 10 pounds), Harlie (weighs 21 pounds) and the walker by myself. So, since I had Brandy, and I knew I what I was getting, we thought we’d give it a try.

I think it went great. However, following us was not her priority. She really wanted to explore and see things that she wanted to see. I am hoping that she enjoyed it enough that she’ll actually want to walk more. She had a smile on her face the whole time.

Tomorrow we have speech therapy, and that’s about it. For the next two days, I’ll be running around getting some last minute errands run before next week. Harlie’s surgery is now just 6 days away!!! I can’t believe how fast it is approaching. I am very ready for it to be behind us.

Well, that’s it for tonight. I hope you are all well.

Take care,
Christy

We have a surgery date!

Yesterday, Murphy had his 4 year check up. He got 6 shots and peed in a cup. The doctor asked Murphy questions and Murphy answered them without any help. It was so funny to hear their conversation. He is getting so big! Of course Murphy goes to the same pediatrician as Harlie, so it is really interesting to have two totally different kids – one that is completely average and normal (50th percentile in height and weight) and one that doesn’t follow any normals at all. I know our doc appreciates the break!

While we were at the doctor’s office our speech therapist came for Harlie’s weekly session. Brandy told me it was the best session yet. Harlie totally has the Go Talk down pat. She presses the picture of the toy she wants to play with and understands the concept. Beth (her speech therapist) taught her the sign for “help”. Brandy said she caught on immediately. Then she said that she and Beth were talking and Harlie was trying to get some legos unstuck. Harlie signed “help”, but they didn’t immediately help her so Harlie then signed “help” and then signed “please”.

And the other day she came up to me and signed “mama”. Well, I didn’t stop what I was doing, so she started signing “mama” faster and with a little attitude, like she was yelling at me. It was so funny. I’ll have to write down all the signs that she knows. I will bet that it is well over 40 by now. At this point, I need to make more of an effort to learn more myself so I can teach her. She is very ready to learn more. So, I’ve just been trying to teach her to put several signs together. It looks like she’s picking that up without much problem. She says “please” without being asked, and uses it correctly. Heck, I still have to remind Murphy to say it.

Oh, and we have a surgery date for Harlie’s bone graft jaw reconstruction. It is June 3rd. It feels good to have an official date now. Now we can start to make some plans. I am assuming she’ll be there 3-4 days or so. I have no idea what the rooms are like. I did find out that parents cannot sleep in the PICU, which is where she’ll go after surgery. Luckily the Ronald McDonald House is across the street, so now I can call and see about reservations there.

Well that’s it for now. As always, thanks for checking in!

Take care,
Christy

Quick Update

Everything is fine here. Although Harlie had a few rough nights of unusual work of breathing and increased suctioning. Usually we go through the whole night without having to suction.

Then she started this coughing thing.

She has these coughing fits that lead to her retching (so far no vomiting). But retching is not good for her newly placed stitches around her esophagus. Plus, it just looks darn uncomfortable for her! I think the coughing is due to her secretions, so I went on ahead and took her in to see her pediatrician. Usually, I would have made her wait it out a few more days - as there is nothing you can do for a cold. But, with surgery less than 2 weeks away, I played it safe.

He agreed that it wasn't worth the risk of her getting worse. So, he put her antibiotics. Usually, I avoid them unless absolutely necessary, but she hasn't been on them in months, so I was okay with it. I don't want to do anything to jeopordize her jaw surgery. Rescheduling that would be a nightmare and would likely mean a delay of months. So, we're not taking any chances.

I finally uploaded some photos. Well, that's about it for now. Thanks for checking in!

Take care,
Christy

Harlie's happy and doing well.

Well, Harlie is doing much better. Her belly is back to normal. And you would not know that she had surgery by the way she acts. She doesn’t seem sore at all, which I find very surprising. There are five incisions on her belly and he used glue, instead of stitches, which is good. The glue will eventually wear off. I will download the pics tomorrow (I hope). I want to show you her mickey button. I think I am going to like it for the most part. But it is taking some time and trial and error to learn what works. It definitely requires more accessories to give her water and meds, which isn’t great. But it does have one feature that I love. It doesn’t allow stomach contents to leak OUT of her stomach. So, at least what goes in, stays in (whereas her peg tube, if it came open, stuff would leak out).

The mickey button stays in with a balloon and eventually the stomach acid will pop the balloon, so we’ll have to change it every three months. Hopefully that will avoid it popping during the night (for example) in which case stuff would certainly leak out then! Yes, WE will change it, not the docs. Yuck. Not looking forward to doing that. But, like everything else, will probably be nothing after some practice.

As far as the surgery’s success…so far so good. I really don’t want to talk about it – afraid I’ll jinx it. But, it sure has been a nice few days for all of us around here. And we go through a lot less bibs, that’s for sure. I am so anxious to see how her not vomiting affects her weight gain. It just seems to me that she’ll have to gain some – she’s not losing much of her food everyday. Certainly that has to make a huge difference.

Well, that’s it for tonight. Hopefully I’ll have the pics for you tomorrow. Thanks for all your comments and e-mails this past week. I really appreciated the encouragement. Even though she was in the hospital for only two nights and three days, it seemed like an eternity. I joke that I have post traumatic stress from last year’s two month stay. But I do think that knowing that we have to do this again in two weeks made it worse. Either way, I really appreciated the support, so thank you!

Take care,
Christy

We're Home!

6pm UPDATE

We're home! YAY! Things finally got moving, so they had no problem sending her home. Her belly is still distended and tight, but they said it will take a few days to go back to normal. As long as things were moving, they were fine with how she was doing.

I think Harlie is starting to feel better, too. She was VERY uncomfortable most of the day. She's walked a very little bit (a few steps with her walker). She is still very tired. So far the feedings are going very well. I am really liking the mickey button. I will post pictures soon. Well, just wanted to let you know.

Talk to you later!
Take care,
Christy

Still in the hospital...

7:30am UPDATE

Well, the normal docs that know us rounded earlier and asked why she wasn't fed overnight. Ugh. The doc never showed up last night to talk to me. I will definitely have to take that to a higher level. Later.

Anyway, they said to start slow feeds, and milk of magnesia (finally!). I was very happy to hear they are going to try to help her instead of just standing around. I'll let you know how it goes.

6am UPDATE

Well, things didn’t improve over night. I suppose the positive is that things didn’t get worse, either. Although I find that hardly comforting at this point. I did manage to get a few hours of sleep. But was awakened before 4am to very bright lights and a lot of people around Harlie. They tried to start IV fluids since they don’t want anything else going in through her g-tube. Some say they hear no bowel sounds at all (which is not good) and some say they hear some faint ones. It is always very hard to tell what you’re listening to with her.

Anyway, the vein shut down, so now they have to find another one to start the IV fluids. I really can’t express just how difficult a task this is. They waited till she was asleep before surgery till they started one and still had to stick her multiple times. She came back with several bruises in both arms and legs. So, they tried again this morning, several different people, several different times each. Finally, the last one said, “no more torture”. So I guess they will try again in a few hours.

Her belly doesn’t seem to be getting worse, but if things don’t start moving the in right direction soon, I am going to really start to get worried. I think they are going to take some x-rays this morning to make sure there’s no obstruction. I keep on asking what we can do to help her, but the only thing they say is time. I will try to get her up and walking today to see if that helps at all.

12 MIDNIGHT UPDATE

I am so disappointed. Unfortunately, in the late afternoon, Harlie’s belly became distended (very bloated) and they wouldn’t let us take her home. Of course I find this out after we made arrangements to get Murphy taken care of and Tom dropped off at the hospital so we could all ride home together. So, at 8pm Tom and I had to go home, let me get an overnight bag and then I drove back to the hospital to spend the night. To make matters worse, they moved Harlie to the step down unit (which is a big room with a bunch of beds separated by curtains). Last year my older brother visited us when we were here and he said going from the PICU to the PCU was like going from a really nice hotel to sleeping at the bus station. That is so true. I will say that we got lucky and got the corner bed, so it has two walls AND a window.

So, her belly is distended because she had anesthesia, abdominal surgery (and they filled her belly with air), she’s been on strong pain meds, and the formula they have here doesn’t have fiber (like we have at home). All of those things have not helped her GI motility, AT ALL! So, now we wait until things start moving and her belly goes back to normal. They had worked her up to full feeds, but after her belly started looking bad, I asked them not to feed her the 5pm feeding. I just gave her water periodically and they tried some meds to see if they would help (they didn’t). All the docs agreed that we could start her night feeding at 9pm at one ounce per hour and I would bring my food from home so she would get the fiber. Now that she’s in the step down unit, they don’t want to give her anything at all. The orders are for her normal feeding of 48 mls an hour (which is a little more than an ounce), but the doc in charge (who isn’t here) said no, she can’t have anything. Ugh.

This is when hospital life outside an ICU is FRUSTRATING!!! It is now after 11pm and she’s had nothing but some water and meds since 1pm. The doc that’s making this decision isn’t here and hasn’t even seen Harlie. All the other docs that know her agreed that 30 mls an hour would be fine. But since this isn’t an ICU, the doc doesn’t have to be here. Of course I had to get assertive, so the nurse said that the doc will come and see me to talk about it. We’ll see how long it takes him to get here, if he ever does. So, it’s late, so I’m going to try to get some rest. They are now cleaning the bed space next door and causing all kinds of ruckus. Lovely. Hopefully things will change over night and we’ll be able to take her home in the morning.

Take care,
Christy

Post-Op and Baby #3 updates

12:30 pm UPDATE

Harlie seems to be doing okay. She’s pretty much been asleep the entire time since surgery yesterday. She did wake up a little bit this morning and looked at me and signed “mama” and put her arms out wanting me to pick her up. She didn’t look too happy and when I went to pick her up realized that she was all sweaty. They had turned up her humidified air way too high. She does not like to be hot. So, I had them turn that down. She is on her normal trach collar, so off the vent, cpap and everything, which is great. They also took out the line in her neck (thankfully). Unfortunately, she’s still on oxygen and was breathing pretty hard this morning. I am still hoping that they will discharge her sometime today – or tonight even.

Yesterday the surgeon and his team came to check on her and he mentioned sending her to the floor today. Well, for those of you that don’t know, the floor is not a place for a trached child. Period. You get minimal help – they don’t even do diaper changes, they just bring the supplies. Keep in mind I only feel the way I do because Harlie has a trach. She has no way of alerting anyone that she needs anything. So, I said, in the nicest way possible, “Um, Dr. Lanning, if you send her to the floor, I’m just going to argue to take her home”. He laughed and said to the other people standing there, “Smart girl”. So, I think he was fine with that.

She’s still on IV pain meds and she’s certainly not back to herself. And they are a bit concerned about her work of breathing. So, they are sending pulmonary to come check on her. I feel confident that she’s completely fine. She’s probably just breathing a bit shallow because of the pain. Her incisions look great – already less red than yesterday. He did say that he gave her a lot of numbing shots in her belly area, so if she starts to bruise, don’t be alarmed.

Oh, one thing I forgot to mention… after the surgery yesterday, the surgeon said it would have been next to impossible to perform the surgery laproscopically without the robot. Her liver is enlarged (due to her heart defects, the fluid backs up into the liver) so he couldn’t have done it and would have had to open her up. So, we definitely made the right decision in rescheduling so we could have the robot. That’s just nice to know.

Hopefully, she’ll start to feel better in the next several hours. We are trying Tylenol for now, to see if she can stay off the Morphine (to get her off the IV pain meds). She’s back on her normal feeding schedule. I just know that no matter what, she will feel better at home. It is very hard to get good rest in a hospital!

Oh, also, we had our 20 week ultrasound this morning. That went very well. Nothing of concern noted. Everything looks normal so far. We are very happy. He said he wants to see me again in eight weeks, which is great as far as our schedule goes. The only other hurdle I want to get over is checking my amniotic fluid level. At 23 weeks with Harlie I started to have too much fluid (which was because she was not able to swallow it like normal). So, if the next time we go and see normal fluid levels, I’ll really be able to rest easy.

The sonographer remembered us from Harlie’s pregnancy and she told me to enjoy this one, which I am. But, I will always have some concerns in the back of my mind, and there is nothing I can do about that. That only comes from my experience and anyone in my shoes would be the same way.

Oh, and no, we are not finding out the gender. I’m doing that for Tom so hopefully he’ll remember that for a long time and treat me really great. Gee, is our six year wedding anniversary coming up this summer???

Well, that’s it for now. Thanks for checking in!
-Christy