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

Surgery Updates (and plastic surgery info)

3:00pm UPDATE

Just wanted to let you know that she's out of surgery and sleeping well. The surgeon is great and said that everything went really well. They were able to do it laproscopically, with no problems, so we are really happy about that. He also saved her g-tube site, so we're thrilled about that! He saved her peg tube for me to see. It was MORE than due to come outta there! I am hoping that maybe that could have been the cause of some of her stomach irritation. Guess I'll bounce that off them when they come to check on her later.

She has a mic-key button now, which I'm pretty excited about. No more sewing button holes in her clothes (thanks, Mom) and hopefully less of waking her up to connect or disconnect feedings, give meds, etc.

The surgery ended at almost 2:00pm. So, she was in there for six long hours. The waiting got very difficult there near the end. I guess it didn't help that I was hungry. Plus, there was some miscommunication when they paged us and told us to go to the PICU because that's where she was. When we got there, she wasn't there. So, we went back and I had the girl call back there to figure out what was going on. It just didn't make any sense that the surgeon wouldn't come out to tell us what happened. She made a call and found out that she was STILL in the OR - so I guess they paged us by mistake. After that, they paged us and said that he was closing up and he would be out soon. We waited another long hour! I was getting very nervous. Then he came out and told us how it went.

They took her straight to PICU, our old home sweet home from one year ago. She is on the vent and they are trying to slowly cut back the rate so we can get her breathing on her own again. She is quite swollen, but hopefully that will go down soon. It really makes me dread the surgery in two weeks. I'm not looking forward to all that.

Well, that's about it for now. I am still hoping that they will discharge her tomorrow, but he warned us that it might be Friday. I will update as I can. Thanks for checking in!

8:00am UPDATE

Just thought I would let you know that they took her back around 8am this morning. She is something. She cried for a little bit when we woke her up (before 5am!) but then settled down and fell back to sleep in the car on the way down. Then when I got her out of the car, she woke up for good, and was in her usual good mood, despite loosing a few hours of sleep.

We went through all the usual stuff pre-op. I am really starting to dislike that whole ordeal. I made a medical summary that puts everything a doctor would want to know about her – all the usual questions, all her surgeries, listed in order, all her meds including concentrations, dosages, times, her feeding schedule, etc. And they still ask me every question – the nurse, the anesthesiologist, the OR nurse, etc. I tried to remember all the times she’s had anesthesia. I can’t recall. She’s had so many diagnostic studies which require anesthesia, plus her surgeries - this whole routine is growing tiresome! And it doesn’t help that we just spent most of the day yesterday doing the same thing. And we’ll have to do it again in two weeks. Ugh.

While I have some time I can go over what we learned yesterday…The neurosurgeon will go in and take a sizeable bone graft from her skull. Then he will replace it with cadaver bone. He said that her surgery is relatively easy (he’s not removing a brain tumor after all) but it is still scary knowing that her brain will be exposed. Kind of hits home how incredible it is that they can “harvest” the bone without doing major damage. He will shave her head from one ear to the other (like a headband) and cut her open there. Odds are that the graft site will not grow the same as the rest of her skull, so we’ll probably have to go in and do some more work on her skull in the future.

Then Dr. Magee will go in and do the jaw reconstruction. Based on her CT scan a few months ago, most of her bone structure in her face looks good (mainly cheek bones) which is great. She is missing a lot of the joint area close to her right ear though, and that complicates matters. He can’t fix that. So, although the bone from her skull “should” grow in her jaw – that won’t help her overall jaw growth. What I mean is that the slow growing part is in the joint, and that will always remain the same (since he can’t fix that). So, as she grows, the distortion will become more obvious (this is true about Goldenhar Syndrome from what I understood since the beginning). So, what that means is that in all likelihood, we will be looking at some sort of revisions down the road. I have to admit that I was disappointed to hear that both areas will require further repairs.

All of the wiring will be under her skin in her face, and then through her jaw. That should minimize scarring, which is good. Hopefully it will work and all will be great come fall. We’ll just have to see.

It was a long day because we also met with anesthesia. I am VERY nervous about her having this major surgery with no cardiologist following her. So, we are working on a way to make that better. We still don’t have an actual surgery date. It will be either the 2nd, 3rd, or 4th of June, that’s all we know at this point.

I will say that if you ever think your life is hard, just go to a pediatric craniofacial clinic. You will go away feeling very blessed. Well, I will update more later. Thanks for the prayers and thanks for checking in!

Take care,
Christy

Oh boy, are we in trouble...

So, we got back from our loooong day in Norfolk for Harlie’s pre-op visit with her plastic surgeon and I’m going through the mail (I dropped Tom off at work on my way home). Murphy and Harlie are playing nicely in the playroom. I’ve tuned them out (as parents of multiple kids know, it’s a matter of survival). When, “Come on Harlie, I KNOW you can do it”! somehow makes it to my brain. I look up and think, hmmm…. I wonder what he’s challenging her with this time. Then I hear, “Take another step Harlie”! GULP!!!! I jump up and run to the stairs and yes, he is coaching her up the stairs and she is on the third step from the bottom. AHHH!!! AND she had her backpack on with a full feeding in it! It must weigh 5 pounds – which on a 20 pound little girl is a lot! Whew! That was a close one!

After I scolded Murphy and explained that Harlie cannot go up the stairs without one of us, I let her go on up. She went the entire way with no help from me! We just did this exercise on Monday during physical therapy. What a long way she has come! She used to get too tired after just a few steps. And we couldn’t do it on that set because they aren’t carpeted. She would put her head down on the steps because she would get so tired. This time she looked so different. She is so much stronger. Every day I notice a difference. It truly is amazing to watch.

Anyway, Harlie’s nissen surgery is tomorrow. Dare I dream that she has thrown up for the last time in a long time???? The past few days have been especially awful. And now that she’s on the move, it gets everywhere. Oh, so many things I am hopeful for…We have to have her at MCV at 5:30 AM!!! So, I’m signing off. I will use our waiting time during her surgery to update you on our day’s events in Norfolk today.

Wish us luck that all goes as planned tomorrow and that it is a successful surgery!
Take care,
Christy

Mothers Lie

Well, for Mother’s Day, I thought I would post the Welcome to Holland writing again, (originally posted on 10/31/06). If you haven’t read it, it is worth scrolling down and checking it out. But today on my trach board one of the moms shared this writing, so I thought I would pass this one on instead. Some of the lines speak volumes to me.

Happy Mother's Day:
Mothers Lie
By Lori Borgman

Expectant mothers waiting for a newborn's arrival say they don't care what sex the baby is. They just want to have ten fingers and ten toes.Mothers lie.Every mother wants so much more.She wants a perfectly healthy baby with a round head, rosebud lips, button nose, beautiful eyes and satin skin.She wants a baby so gorgeous that people will pity the Gerber baby for being flat-out ugly.She wants a baby that will roll over, sit up and take those first steps right on schedule (according to the baby development chart on page 57, column two).Every mother wants a baby that can see, hear, run, jump and fire neurons by the billions.She wants a kid that can smack the ball out of the park and do toe points that are the envy of the entire ballet class.Call it greed if you want, but a mother wants what a mother wants.Some mothers get babies with something more.Maybe you're one who got a baby with a condition you couldn't pronounce, a spine that didn't fuse, a missing chromosome or a palate that didn't close.The doctor's words took your breath away.It was just like the time at recess in the fourth grade when you didn't see the kick ball coming, and it knocked the wind right out of you.Some of you left the hospital with a healthy bundle, then, months, even years later, took him in for a routine visit, or scheduled him for a checkup, and crashed head first into a brick wall as you bore the brunt of devastating news.It didn't seem possible.That didn't run in your family.Could this really be happening in your lifetime?There's no such thing as a perfect body.Everybody will bear something at some time or another.Maybe the affliction will be apparent to curious eyes, or maybe it will be unseen, quietly treated with trips to the doctor, therapy or surgery.Mothers of children with disabilities live the limitations with them.Frankly, I don't know how you do it.Sometimes you mothers scare me.How you lift that kid in and out of the wheelchair twenty times a day.How you monitor tests, track medications, and serve as the gatekeeper to a hundred specialists yammering in your ear.I wonder how you endure the clichés and the platitudes, the well-intentioned souls explaining how God is at work when you've occasionally questioned if God is on strike.I even wonder how you endure schmaltzy columns like this one-saluting you, painting you as hero and saint, when you know you're ordinary.You snap, you bark, you bite.You didn't volunteer for this, you didn't jump up and down in the motherhood line yelling,"Choose me, God. Choose me! I've got what it takes."You're a woman who doesn't have time to step back and put things in perspective, so let me do it for you. From where I sit, you're way ahead of the pack.You've developed the strength of the draft horse while holding onto the delicacy of a daffodil.You have a heart that melts like chocolate in a glove box in July, counter-balanced against the stubbornness of an Ozark mule.You are the mother, advocate and protector of a child with a disability.You're a neighbor, a friend, a woman I pass at church and my sister-in-law.You're a wonder.Lori Borgman is a syndicated columnist and author of All Stressed Up and No Place To Go, her latest humor book now available wherever books are sold.

Mothers Lie

Well, for Mother’s Day, I thought I would post the Welcome to Holland writing again, (originally posted on 10/31/06). If you haven’t read it, it is worth scrolling down and checking it out. But today on my trach board one of the moms shared this writing, so I thought I would pass this one on instead. Some of the lines speak volumes to me.

Happy Mother's Day: Mothers Lie
By Lori Borgman

Expectant mothers waiting for a newborn's arrival say they don't care what sex the baby is. They just want to have ten fingers and ten toes.

Mothers lie.

Every mother wants so much more.
She wants a perfectly healthy baby with a round head, rosebud lips, button nose, beautiful eyes and satin skin.
She wants a baby so gorgeous that people will pity the Gerber baby for being flat-out ugly.

She wants a baby that will roll over, sit up and take those first steps right on schedule (according to the baby development chart on page 57, column two).
Every mother wants a baby that can see, hear, run, jump and fire neurons by the billions.
She wants a kid that can smack the ball out of the park and do toe points that are the envy of the entire ballet class.
Call it greed if you want, but a mother wants what a mother wants.

Some mothers get babies with something more.

Maybe you're one who got a baby with a condition you couldn't pronounce, a spine that didn't fuse, a missing chromosome or a palate that didn't close.
The doctor's words took your breath away.
It was just like the time at recess in the fourth grade when you didn't see the kick ball coming, and it knocked the wind right out of you.

Some of you left the hospital with a healthy bundle, then, months, even years later, took him in for a routine visit, or scheduled him for a checkup, and crashed head first into a brick wall as you bore the brunt of devastating news.
It didn't seem possible.
That didn't run in your family.
Could this really be happening in your lifetime?

There's no such thing as a perfect body.
Everybody will bear something at some time or another.
Maybe the affliction will be apparent to curious eyes, or maybe it will be unseen, quietly treated with trips to the doctor, therapy or surgery.
Mothers of children with disabilities live the limitations with them.

Frankly, I don't know how you do it.
Sometimes you mothers scare me.
How you lift that kid in and out of the wheelchair twenty times a day.
How you monitor tests, track medications, and serve as the gatekeeper to a hundred specialists yammering in your ear.

I wonder how you endure the clichés and the platitudes, the well-intentioned souls explaining how God is at work when you've occasionally questioned if God is on strike.
I even wonder how you endure schmaltzy columns like this one-saluting you, painting you as hero and saint, when you know you're ordinary.
You snap, you bark, you bite.
You didn't volunteer for this, you didn't jump up and down in the motherhood line yelling,
"Choose me, God. Choose me! I've got what it takes."

You're a woman who doesn't have time to step back and put things in perspective, so let me do it for you. From where I sit, you're way ahead of the pack.
You've developed the strength of the draft horse while holding onto the delicacy of a daffodil.
You have a heart that melts like chocolate in a glove box in July, counter-balanced against the stubbornness of an Ozark mule.

You are the mother, advocate and protector of a child with a disability.
You're a neighbor, a friend, a woman I pass at church and my sister-in-law.
You're a wonder.

Lori Borgman is a syndicated columnist and author of All Stressed Up and No Place To Go, her latest humor book now available wherever books are sold.

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