Baby Furniture

So, in an earlier post I mentioned that we aren't "ready" for this new baby - as far as a room, I mean. We can't reuse Harlie's furniture because she is no where near ready for a big girl bed. She is still connected all night long to her feeding tube (for 10 hours she gets fed while she sleeps - bring on the calories!) and she is connected to the trach collar which supplies her humidified air (and oxygen when necessary). Oh, and her pulse ox probe which is wrapped around her toe. Plus, she can't walk yet, so there's no way she's ready to give up her crib.


So, months ago I saw the furniture I wanted - in the Pottery Barn catalog. Well, we're certainly in no position to go buying it there, of course. So, my dear, sweet, handy husband said he could make it. Yes, build it himself. Which is great. Except that time is not something we have a lot of and so we're slightly behind schedule. Oops. Here are some photos:







The good news is that he's finished building the crib. The bad news is that he still has to start the dresser/changing table, and then a night stand. And then, of course, I have a list I've started, you know, toy boxes, toy shelves, etc. Poor guy. Oh, and we're painting the furniture navy blue. I thought it would be really cute to accent it with pinks and lavenders if it's a girl, and whatever other colors if it's a boy. So, that's the plan. Let's just hope this baby cooperates and gives us a few more weeks to finish. I'm 35 weeks along, which is when I delivered Murphy and went into my first labor with Harlie and started bed rest to buy two more weeks. So, hopefully this one will be completely different and I'll be 39 weeks DYING to deliver.

Take care,
Christy

Guessing Game

So my friends set up this game for people to guess the gender, weight, etc. of Baby #3. If you want to play along click here and enter your guess. The game name is ChristyH - you enter that in the upper left hand corner under Invited Guests. I'll see what I can do for the winner...

Thanks,
Christy

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,
Christy

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,
Christy

Bad day/Good day

Okay, the good stuff first…

We had another appointment with Harlie’s cardiologist for a second fetal echo (ultrasound of the heart) on Baby #3. And everything looks GREAT! He said that they got some great pictures and we can stop worrying about this baby’s heart now. I wasn’t really THAT worried since we got a good report six weeks ago, but it is very comforting to know that this hurdle is safely past. YAY!

Our next hurdle is three weeks from now. We have another appointment with my perinatologist for another ultrasound. Hopefully everything will look good then and we can relax the rest of the way (yeah, right).

So for the bad stuff...

So, for physical therapy today, we met Traci at the play area at Regency Mall. We were thinking that being there would help motivate her to go from one area to another – enough to WALK between the areas. So, Brandy, me and Harlie got there a little early since it takes a while for Harlie to walk anywhere with her walker. Harlie will go really fast for a few feet and then stop and not move. Then she’ll go again – stop and start, etc. I don’t get why she won’t just walk a steady pace like a normal kid, but that’s just one of my many unanswered questions.

So, we’re trying to get her in the doors (there were three full sets – so plenty of other options for someone not patient enough to walk behind Harlie). And for some reason, everyone stacks up behind her. Even though it shouldn’t, it puts pressure on me – and I’m sure she can feel it, too. I finally tell the people behind us (who are blatantly staring – with NO shame) that they can go around her, please. They do, but then STOP, yes, STOP to stare and watch her. Now, I try to give people the benefit of the doubt – maybe they are just so overcome by her cuteness that they want to REALLY soak her in. Of course, as much as I wish that were true, I cannot make myself truly believe that. Odds are they’ve never seen a kid like her and they just want to figure her out a bit. Either way – I wish they wouldn’t be so ridiculously obvious about it. Talk about making me feel weird! And I can only assume that Harlie feels the stares, too, because she absolutely REFUSED to walk after that. And although she is only 21-22 pounds – there is NO forcing her to walk. Period. Gee, thanks staring people. And thanks Mom and Dad, for raising me right and teaching me NOT to stop and stare at people who look a little different. I mean, seriously, how in the world could they think that is acceptable behavior???

So, I pick Harlie up and we go to the play area. Harlie started crawling on the stuff, completely enjoying looking around at all the kids. The kids started gathering around her, just staring at her. One mom sat down next to me and her daughter (pointing at Harlie) asked her “What’s that thing around her neck”? She said “It helps her breathe”. Her daughter asked why and she said “because some people need help to breathe”. Just hearing that be said out loud and watching all the kids just stand there and stare at her – all the while Harlie not having a clue what’s going on – made me start to cry.

My child needs help to breathe. My child looks different. The harder I tried not to, the harder it came. It’s the innocence of Harlie not knowing, that tears my heart into a million pieces. One day she’ll learn. She’ll know why they are staring. And she will cry because it’s her heart that hurts. I know it could be worse. I know better than most - now that my eyes have been opened to a whole new world. But, it only eases the pain slightly. The bottom line is that I will still need to do what I need to do to get my daughter through the tough times. Even though it COULD be worse, nothing changes the way it IS.

Well, Traci got there, and I eventually pulled myself together. I can’t help wondering if Harlie could feel something with the staring, because she simply would not cooperate with the physical therapy. She flat out REFUSED to walk – no matter what we did. It was so frustrating. Especially when we know that she CAN do it. I suppose if people staring makes ME feel self conscience, than maybe it has the same affect on her.

That mom that explained to her kids what the trach was, was pretty nice. Nicer than most in that most people completely ignore me – despite what their kids are doing around Harlie. She said she was sorry if her kids upset me. It’s more complicated than that, but I appreciated her kindness. But as we were leaving she said something like she won’t walk because she’s “spoiled”. She didn’t mean it in a mean way, but it definitely hit a nerve for me. Spoiled?! First of all, if there’s any kid that deserves to be spoiled – it’s her. But, we don’t spoil her. In fact, I am harder on her than any normal mom is on her healthy kids. Every day I make Harlie do something she doesn’t want to do. Something that she’s afraid to do. Something that SHOULD come easy to her – but doesn’t. It is not easy to push your child like I do. Thank God most of the time, I am fine. I am happy. I really am. I have a lot to be happy about. I know more than most what a true gift a child is – healthy or unhealthy. But some days, some situations just hit me harder than usual. And I’m guessing that the pregnancy hormones aren’t helping me any.

Luckily, after I dropped Harlie and Brandy off at home, I met Tom at my doctor’s appointment and that went well, so that put me in a much better mood.

Oh, this weekend I e-mailed Robert Barron, the one who does the prosthetic ears in Northern Va. He is the one that used to work for the CIA doing disguises for their agents. He now does prosthetics - ears, noses, eyes, hands, etc. Fascinating stuff. Anyway, on his website you fill out a "contact me" form, which I did, just to find out when we should start thinking about Harlie's ear - and if we should go the prosthetic route, or reconstruction route. So far, Tom and I are thinking prosthetic for now and once she gets older letting her be a part of making the decision for surgery. Well, like I said, I just sent my request THIS weekend and HE, himself, called me TODAY! I couldn't believe it. Anyway, he said to call him back when she's five. So, that's that. I was just hoping that she would get an ear before Kindergarten. But, I guess we'll just have to see how the timing works out. Well, that’s it for tonight.

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

Fetal Echo Appt.

GREAT news! The baby's heart looks completely normal!!! YAY!! We are so happy and relieved. Dr. Gullquist (Harlie's cardiologist) is wonderful and as he was looking at the screen, he was talking out loud as he saw the heart. I see both ventricles, they look normal, no VSD, no transposition, etc. He answered all my questions before I even asked. And he said that if he were looking at Harlie's heart at this time, he would have seen her defects by now. So, that made me feel better.

So, all looks GREAT! I will go back in six weeks for another look, just to be on the safe side. But we certainly feel great after this appointment. It went exactly the way I hoped it would.

He also mentioned to me that Harlie needs another heart cath this summer. There were some concerns after her last cath in June. He just wants to make sure that all questions are answered and that he isn't missing a window of opportunity if something needs to be addressed. I think we are going to shoot for August. Hopefully her jaw will be unwired by that time, which I think would make me feel a bit better. I mean how much can I put her through in one summer for crying out loud?!

Well, our next ultrasound is Thursday. Along with every other appointment! Next week will be a killer week for us. Hopefully we are on a roll of good things and that everything will work out wonderfully.

Just wanted to share our WONDERFUL news! What a difference to leave a fetal echo with smiles on our faces and hearing "congratulations" on our way out the door!!! Thanks for checking in!

Take care,
Christy

Update

Sorry for the long absence. I guess I just needed to take a “break”. Truthfully, I have been so busy that by the time the kids are in bed, I am way too tired to write. I calmed down after my rant. For the most part, everything’s been fine and I’ve been happy.

Although today I almost had a meltdown. Brandy was off today and it just seemed that every task took an incredible amount of time and effort to complete. I can’t tell you how many times I start a task (like unloading the dishwasher) and I have to stop and walk into the living room to help Harlie do something (like breathe). Then I walk back into the kitchen to finish unloading the dishwasher when I hear her throw up. Then I have to stop what I’m doing, and go clean it up. This repeats for several hours. Then we ran some errands, had an appointment and I got her home at 2:30 (well past her nap time - see, the appointments are rarely convenient). I took her upstairs and got her settled for her nap. Then I came downstairs to fix my lunch (yes, lunch at 2:30, I was starving and had not eaten since breakfast). I got out the food and Harlie needed me, again. So, I go back upstairs, fix the problem, then come back downstairs to finish making my lunch. Then her pulse ox alarm blares non-stop. So, I have to stop what I’m doing (try not to faint from hunger) and go back up, again, to put the probe back on her toe. The next time it was to stop her feeding. I went up those stairs 4 times in 10 minutes. Didn’t actually sit down to eat until 3:00. I am not a happy camper when I’m hungry, that’s for sure. Luckily she slept soundly, so I got to take a breather myself.

I am slightly nervous about Harlie’s secretions. They are very thick. I think that’s a bad sign. But, she’s been acting fine. Although last night I did have to turn on the oxygen concentrator. But, I am thinking it was because she was so tired. She walked a lot yesterday and then my parents came over for dinner, so she went to bed a little late. She hasn’t had any fevers and her nose isn’t running, so I really think she’s fine overall. We still have one full week before her surgery, so I will just have to be very careful with her.

Well, late last week we went and got Harlie’s foot braces. I will post a photo soon. They are cute. But you usually can’t tell she’s wearing them. They only go to her ankle and since she has to wear socks underneath the braces, the socks usually cover them. The braces look like plastic boots with no toe. They go around her foot and socks and they have velcro to strap them on and they have to be pulled VERY tight. Then the shoes go over the braces. Some special shoes came with the braces. They are made really wide and tall, so they go over the braces easily. I think they are hideous. To see her little toothpick legs go in those HUGE shoes looks really funny. Functionally, they are fine except when she is playing on the floor. Then the big, gigantic-ness of the shoes get in her way.

Traci, Harlie’s PT will oversee the use of the foot braces. She took her Keds and actually got them over the braces, which I was VERY happy about. That worked for two days. Then they started to hurt her feet. Since then, I have put the huge shoes on her. Hopefully I will be able to get her out soon to see if we can find another pair of shoes that will work. Plus, I think canvas shoes would be cooler in the hot summer. So, wish us luck.

I do think the braces are helping. She definitely walks more straight and doesn’t pronate at all (walks on the inside of her feet), which is great. I think we can expect for her to wear them through the summer and winter and we’ll see how she is after that.

Oh, and some good news. Traci suggested that we go down to one PT session per week, instead of two. She said that Harlie is doing great and at this time, she doesn’t think she needs the intensity of two sessions. Plus, it will give us more time during the summer, which I think is a wonderful thing!!! She is going to give me some specific tasks to work on each week, so I can stay focused on her activities. So, I’m happy about that.

Tom had some “guy” time this past weekend, going to the race on Friday night and a baseball game in DC on Saturday. He was thrilled with the race because a friend of ours got them tickets to the Toyota booth and he said that was really cool. But, that left me here with the kids and they kept me plenty busy. I actually found some time to clean (just in case you’re interested, Tara). I find that if I keep on it, it doesn’t get too much for me to do. It just feels like I do it all the time.

Well, tomorrow Murphy’s school is having breakfast for us moms for Mother’s Day, which I think is really cute. So, I’ll have breakfast with him in his class. That should be really interesting. Then I have an OB appointment (just my monthly checkup). Then on Friday Tom and I have an appointment to see Harlie’s cardiologist to get a fetal echocardiogram (ultrasound on the baby’s heart) on Baby #3. I am looking forward to a good report there. I will be 20 weeks along then, and hopefully he’ll be able to get some good views and hopefully everything will be as it should be. I am really starting to feel him/her move a lot now, which is great.

Well, that's about it for now. Thanks for all your comments and support after my rant. I really appreciate it!

Take care,
Christy