Wednesday, May 30, 2007

A day out.

Well, today was a really good day. Brandy and I decided to take Harlie OUT - and not to a doctor's appointment! So, we ran a few errands and went to Stony Point to have lunch and walk around the mall. Harlie liked being out so much that she didn't nap AT ALL! We couldn't believe it. And she was so good. She is really the most content baby I have ever seen! She just goes with the flow. A couple of people did look in the stroller and stare. I couldn't believe how obvious one guy was. He had a child in a stroller, too. It definitely made me feel uncomfortable, but I am sure that I will get used to it. I'm sure it is just curiosity. For the most part, people were nice. As Harlie gets older I think her personality will out shine her "imperfections". I think she is hysterical.

Tomorrow we have her cranial molding for her new helmet. Hopefully she will have it by mid June. And then we go see her pediatrician.

Oh, and another good thing, I spoke with her cardiologist today and he said that I can stop giving Harlie her diuretics. So we go from 5 meds to 3, which is great.

Well, that's it for today. I hope you are all well. I'm glad that you enjoy the photos. I think some of them are really starting to capture her happy personality.

Talk to you later,
Christy

Tuesday, May 29, 2007

Weight gain issues

Hi. Well, we had her pulmonary appointment today. Her lungs sound good. But, I am pretty discouraged at her weight gain – or lack thereof. The last week we were in the hospital (a week and a half ago), she weighed 12.9. Then, at her pediatrician’s appointment, just a few days later, she weighed 12.12. Not bad. That was exactly one week ago today. And today she weighed 12.8.6. So, I suppose I could round-up to 12.9. Either way, I can’t help but be frustrated. She is still the size of an average 3 month old.

So, I chatted with her nutritionist about it. Unfortunately, we can’t up her volume or her calories per ounce. Her food is already packed with as much protein as her body can handle. We are going to try putting a little karo syrup in her formula to see if that helps. That will give her more calories.

They are also going to test for C-Diff. That is an intestinal disease that she could have gotten because of all the heavy antibiotics she was on in the hospital. Basically, the antibiotics can kill good bacteria, too, and that can allow the bad bacteria that are always there to take over. Some of the signs that she is showing could be explained by her formula change, or her meds (she’s still on diuretics to help her body get rid of fluid, which make her dehydrated, which makes her secretions thicker, which makes her gag on her secretions, which makes her vomit). Isn’t this fun?

At any rate, that might help explain her weight gain issues. I don’t know if I want her to have it or not. In one way, it would be an answer that can be corrected (although sometimes it can be very difficult to treat). But, if it isn’t that, then it could be something else…

So, hopefully we can get an answer to that in a few days. All I know is that I want her to start gaining weight!

Oh, I forgot to mention that I added more photos. And, just a little reminder, the Pampered Chef Fundraiser ends on June 4th. Thank you for all of your support.

Take care,
Christy

Monday, May 28, 2007

Harlie moved!

I hope you all had a good Memorial Day weekend. Ours was good. We took Murphy to a birthday party for his friend, Kerri. That was a lot of fun. And Brandy came over today so Tom and I could spend the day with Murphy. We went to Lake Anna with Bruce and Nancy and hung out and went jet skiing. During our vacation last year I couldn't ride because I was pregnant. But today I got to drive one and that was a lot of fun.

But, the thing I am most excited about is that we moved Harlie upstairs to her bedroom! I feel like that is such an accomplishment and it makes me feel so much more normal! So far she is loving her crib. And it makes storing all of her equipment and supplies so much better for us. I just love having her in her room!

Tomorrow we go to the pulmonologist down at MCV. I think we will also see the nutritionist that took care of Harlie when she was in MCV the past couple of months. I really like her a lot and I am getting a little concerned over her very slow weight gain. The formula that she is on right now is full of protein and she should be packing on the weight. So, hopefully she can help us with that.

Well, it is late, so I have to go. I hope you are all well.
Take care,
Christy

Thursday, May 24, 2007

Cardiologist appointment

Well, we went to the cardiologist today. That went well. He said that her chest tube site looked really good – especially for how long the chest tube was in (almost 6 weeks!). They did an echocardiogram, and all looks good with her heart. So far, so good as far as the effusion goes. We'll see him in another month.

We put Harlie in a high chair yesterday. I had to put a towel in the seat first because without it, she could barely see over the tray (she truly is the size of a 3 month old!). Anyway, once I put the towel in, she sat up higher and could bang toys on the tray and she LOVED it! Murphy brought her a balloon from his birthday party and she loved throwing that around, too. I got some good pics and will download them soon.

It was so nice to put her at the table with us during dinner. Murphy wanted to sit beside her. He asked where her spoon was. Oh well, it was just nice to have her with us. Hopefully we’ll be able to do more normal things as time goes on.

After our cardiologist appointment I took Harlie and Brandy home and then I went to my mom's surprise retirement party at Parker, Pollard and Brown. It was a GREAT party. They made a video for her that was hysterical. I thought it was a really good send-off for a great 35 years. Tom took Murphy to the bathroom and when he came back, Harry Pollard was giving a speech. Murphy busts in the room and says (very loud and proud), "Mama, I just went potty!" It was really funny. Well, it is late. Talk to you later.

Take care,
Christy

Tuesday, May 22, 2007

So many docs, so little time

So Harlie met her new pediatrician today. That went well, I think. They seem nice there. It is REALLY close, so that is a huge plus for me. It was tiring, though. Going over all her stuff and introducing new people to her can be a bit exhausting. Luckily he knows her cardiologists well, and they gave him a heads up.

I started working on getting all of her other appointments rescheduled. She has to see her general surgeon to talk about and schedule her next surgery (anoperineal fistula). He is in DC. She also needs to see an orthopedic doctor for her spine issues. They wanted us to follow up in April and obviously we couldn’t do that. They are also in DC. So, of course, I try to get them scheduled for the same day. I start by calling the surgeon and getting some dates. Then I tell the scheduler that I need to call ortho and will call him back. He says he can do that for me. Great, I say. I’m in luck and that doesn’t happen often! At some point, he says, “What’s wrong with her?” Nice. I answer, “a lot”. Then he tells me that coordinating these two appointments will never happen. The surgeon only has clinic on Tuesdays and ortho doesn’t have clinic on Tuesdays. Then his computer stops cooperating and he couldn’t get the ortho appointment scheduled. So, I’ll have to call back. So much for my luck.

I really thought that we would be able to take a break from doctor’s appointments for a while. I thought wrong. She has a cardiology appointment on Thursday, pulmonology appointment next Tuesday, pediatrician appointment next Thursday (and probably bi-weekly after that), she will meet a brand new doc (GI) in June, feeding clinic in June, general surgeon, orthopedics and ENT in July, and I still have to reschedule her appointments with her eye doc and surgeon.

That is 10 docs before July 5th. Oh, and we need to get her a new helmet – so that’s another bunch of appointments. Not to mention weekly physical and bi-weekly occupational therapy appointments. Sometimes I really don’t know how I’m going to do it. Just typing it is exhausting!

I changed her feeds to a higher volume per hour for 22 hours instead of 24 hours. That gave us 2 hours away from the pump. One less thing to have to carry to the doc today. And during bath time, I took her upstairs and gave her a bath at the sinks while Murphy played in the tub. It was nice to do that. I’m sure Harlie liked the change of scenery. We used her changing table for the first time since December. I think she liked her room. Hopefully she’ll be able to sleep there by the fall. She was sound asleep by 9pm, which was great.

Well, that’s it for tonight. Talk to you later.

Take care,
Christy

Monday, May 21, 2007

Settling In

Well, it has been wonderful having Harlie home. It is taking me some time to get back into the swing of things. The weirdest thing is that I have to re-learn her “normals” and for the first time, try to establish a schedule for her. Prior to her heart surgery, she was so tired all the time, so she slept a lot. Now she has more energy, so I need to get us into a routine. It is so fun to watch her act like a baby. And it has been great watching Murphy and Harlie interact. Before her last heart surgery, there was no interaction at all. Now Murphy brings her toys and she takes them from him. She reached out to touch his face tonight and he loved it.

Tomorrow (Tuesday) we have an appointment with her pediatrician. After a lot of thought, I made the decision to change pediatricians. Tomorrow is our first appointment with him. So, we’ll see how that goes. The equipment company delivered our portable feeding pump today, so that’s good. Now we will be able to move her around a bit. Tomorrow, I will increase her per hour volume and reduce the number of hours from 24 to 22 per day. That way I can disconnect her for a couple of hours a day. Hopefully she will be able to tolerate that okay. Oh, I forgot to tell you that she is definitely allergic to Pampers diapers. Her rash was all better within one day of changing back to Huggies.

Well, that’s it for tonight. Thank you for all your support.

Take care,
Christy

Saturday, May 19, 2007

Well....we are home!

We are HOME! Christy is sleeping, Murphy is watching The Land Before Time (for the 50th time - thanks Elaine....haha) and I am sitting here. Almost seems somewhat normal. Of course normal means something completely different to us. Dawn (our nurse) spent the night and is still here. She is going to help out a bunch this weekend which is nice. I am sure Christy will update this more later. I just wanted to pass the word on to those who read daily.

Tom

It is so funny to read Tom's entry - so short, so calm. Me, on the other hand, is GIDDY with absolute happiness!!! It was really weird to leave WITH her. I had such a mix of emotions - so happy and so sad at the same time. I feel like everyone there really took to her and loved her. And I feel like I made friends and I am sad I won't get to see them on a daily basis anymore.

The other weird thing is that I know in the back of my mind that there is a good chance I will have to take her back in the near future. She has been on room air for 4 days now - the longest ever. I know that if I have to turn the O2 on, that's a sign that the effusion is too much for her to tolerate. Then we'll take her back to MCV and they would tap her and drain it. But, they are thinking I could take her back home again and wait till the next time. But, hopefully none of that will happen.

Until the chest tube site heals, I have to continue to give her sponge baths. I can't wait to give her a regular bath again. She's going to love it. But, last night when I was giving her a sponge bath, she was flapping her arms and smiling the whole time. She seems so happy to be home! Oh, and since she's not on O2, I started letting her wear an HME or artificial nose over the trach (to heat and moisturize her air). The idea is this is what she'll wear when she's awake (so she can have some freedom to roll over and use her arms without the trach collar in her way) and she will go on the trach collar when she's sleeping. I am really excited about that. She would be so free if it weren't for her food.

I can't remember if I mentioned it before, but she's on continuous feeds 24/7 for the next 2 months or so. Once she's completely healed from the chylothorax, after 3 months or so, then she'll be able to go back to a somewhat regular schedule and regular formula.

Well, I am going to go and play house now. I actually have a ton of unpacking and organizing to do. Thanks for all your support and I'll talk to you soon!

Take care!
Christy

Friday, May 18, 2007

Possible discharge!

Well, today (Thursday) went really good, I think. Her x-rays showed an effusion (fluid build-up), which is not surprising. Now we just have to hope that the drainage has decreased to an amount that her body can tolerate. So, they will take another x-ray in the morning and if that looks okay, and she goes through the night with no problems, then....we get to go HOME!!! YAY!!!!The thought of being home again makes me giddy. But I have to admit - I am really going to miss some of Harlie's nurses. They were so great to Harlie and to me. It is amazing how attached you can get in 2 months.

Well, that's pretty much it for tonight. Hopefully all will go well tonight. My only reservation is that her respirations are high - 100 breaths per minute. Hopefully she will adjust to the fluid and things will equalize and if all goes as planned, the drainage will decrease and her respirations will slowly go back to her normal. But that should take days and hopefully we can get and stay home while that's happening. Well, thanks for your support. I hope you are all well!

Take care,
Christy

Thursday, May 17, 2007

Chest tube is OUT!

Well, Wednesday turned out to be a pretty exciting day. My mom brought me lunch and diapers for Harlie. We have been battling a bad diaper rash the whole time we've been in the hospital. They always blame the meds, etc. I was telling a new nurse that she never gets a diaper rash at home, when it finally dawned on me that hospitals use Pampers and I use Huggies. So, maybe that's the problem. So, my mom brought me some Huggies. Hopefully we'll see an improvement very soon.

Well, I was changing her diaper when I noticed that the chest tube was laying BESIDE her and not IN her! I called the nurse over and they came running. They said that they have never had a chest tube just come out like that before. (ha - I honestly laugh at the word "never" now!) They said it can be very painful when it comes out (under controlled circumstances) and Harlie was just looking at us like "what's all the fuss about?" It was SO funny. Two of her cardiologists came over to see her after that. One of them looked at me suspiciously. I joked that I pulled it out. She said that's what she thought. I told her had I known that Harlie wouldn't explode I would have done it sooner! The docs would have moved at a snail's pace to get to this point.

As long as she doesn't show any respiratory distress and her x-rays look good, we might be able to have her home by the weekend. She had x-rays yesterday and will have more today just to make sure that no air got in her chest cavity. Especially since we have no idea how long it had been out. She's been on room air for over 24 hours and maintaining her sats in the 80's, which is great.

And let me tell you, I am ready to leave this place. My brother, Bruce, came to see Harlie last night. He said the transfer was like getting kicked out of a nice house and having to stay at the bus station. And that is so true. Yesterday I had to hear a little boy hack and cough and spit until he finally threw up. His mom and nurse where cheering him on saying "spit it out, spit it out, Honey". It was lovely. And the other morning I woke up at 5:30 am to a different little boy asking the nurse if he could watch cartoons. Ahhh, I just love the soothing sound of cartoons in the morning.

Seriously, I have a really good feeling about this. Usually I am much more reserved. So, hopefully my feeling is right. Please keep your fingers crossed.
Take care,
Christy

Tuesday, May 15, 2007

Transferred to PCU

Well, what we were dreading actually happened today. Harlie was transferred to the Progressive Care Unit.

I know it might sound weird - but room 608 was our home for the last 2 months (well, 7 weeks - to be exact). It was VERY hard to pack up and move out. And let me just tell you - you accumulate a lot in 2 months!! Tom had to come and help me carry as much as we could do without to the car. I was really comfortable with all of her nurses and I really don't like being without them. It was VERY sad for me to leave.

Now we are in an open unit with curtains separating the beds. Hopefully, we won't be here much longer though. The good news is that her drainage is definitely decreasing. Everytime it has decreased before, it wasn't real because it was accumulating in her chest (the tube was clogged). But this time, she is not showing ANY respiratory distress. In fact, she is on ROOM AIR!!! YIPPEE!!!

So, I really think that we are very close to being able to remove the chest tube. I will know more tomorrow when I talk to her docs. The discharge nurse is so nice and she was very sympathetic about our move today. She said that she is going to continue to try to get us home with or without the chest tube. She said that she has met some resistance from our equipment company. They said this has never happened before and they are starting to get a little nervous about the safety issues. I think they are being overly cautious in that we are going to test the equipment here first. If it doesn't work, then fine. But, maybe we won't have to worry about it afterall.

Developmentally, she is definitely behind. But I am very pleased at the progress she has made despite the fact that she's been in the hospital for the last 9 out of 10 weeks. Her physical therapist said that she noticed a definite improvement from last week. She would have rolled over tonight for sure if it weren't for her trach collar. She actually reached for her little fish tank and tried her best to scootch her way over to it. It is so wonderful to see her starting to act more like a baby and less like a newborn. And she is cutting her second tooth. We are still not sure if they are going to be white or not. It is possible that they could be grey or spotted due to all the antibiotics she's been on (practically her entire life!) But I am hopeful.

Well, it has been a very long day so I need to get some rest. I hope you are all well. Thank you for your continued support.
Take care,
Christy

Sunday, May 13, 2007

Happy Mother's Day

Just a quick one tonight - since my long entry was yesterday! Anyway, just wanted to say Happy Mother's Day to all you mothers out there. I hope you had a great one.

Well, I got the best Mother's Day present from Murphy today. He is officially potty trained!!! At 3:30AM he woke up and said, "Mommy, I have to go potty". It really was music to my ears. I can't believe how big he is getting. And can that boy talk!! Whew. I have no idea where he gets that from!

I want to give a special thank you to Barbara (a friend from Parker, Pollard and Brown). She came over and spent hours planting plants around our mailbox today. Everything out there had died and looked absolutley terrible and Tom and I just have not had the time or energy to get to it. It looks beautiful now! So, thank you Barbara!

Please keep your fingers crossed that all goes well and we can bring her home this week. I'll let you know what happens (of course!) Again, I hope all you mothers out there had a wonderful day. Oh, here's a poem that someone posted on the congenital heart defect support group. I thought it was sweet and thought I would share it with you.

Heaven's Very Special Child
A meeting was held quite far from Earth
It was time again for another birth.
Said the Angels to the Lord above --
"This special child will need much love.
Her progress may be very slow
Accomplishment she may not show.
And she'll require extra care
From the folks she meets down there.
She may not run or laugh or play.
Her thoughts may seem quite far away.
So many times she will be labeled'different' 'helpless' and disabled.
So, let's be careful where she's sent.
We want her life to be content.
Please, Lord, find the parents who
Will do a special job for you.
They will not realize right away
The leading role they are asked to play.
But with this child sent from above
Comes stronger faith, and richer love.
And soon they'll know the privilge given
In caring for their gift from heaven.
Their precious charge so meek and mild
is heaven's very special child."
-author unknown

Saturday, May 12, 2007

Possible Discharge?!?!?

Well, we've had a few busy days at the hospital. I have been really worried about getting kicked out of the PICU and transferred to the floor. Everyone knows that Harlie doesn't really need intensive care anymore. She's quite easy to take care of, actually (compared to a month ago, anyway).

The hardest thing about my day now is making her do physical therapy. It is one of the MOST difficult things I have to do as her mother. They laugh at me because, as her mother, I have to do a lot of things you wouldn't normally do, and I'm really fine with those things. But, making her cry - well, that's a whole different ball game! Personally, I think the sweet babe has been through ENOUGH! But I know that PT is good for her and she needs it. (She is 7 months old but seems more like a 3-4 month old.) This is tough love for me, let me tell you!

Anyway, back to the point... so dreading the floor and trying my best to avoid it - I asked her cardiologist one more time about taking her home WITH the chest tube. He said he has never seen it done, but he would be fine with me doing it if I can make it happen. Evidently they have a problem with the home health care wanting to accept responsiblity for chest tube care. There are some dangers and risks - but I think they are avoidable by taking extra care and being smart. Two things I've already taken care of. haha

So, the second he walked out of our room, I called our home health care company. They said they are fine with it as long as her nurses are fine with it. So, I called our nurses (Dawn and Brandy) and, of course, they are fine with it. So, we are ALL fine with it. So, I told him that, and he called a meeting of all her caregivers at the hospital to discuss it in more detail. So far, none of them have seen this happen (a child go home with a chest tube). But they said that if anyone can do it - it's ME! Isn't that great?! So the discharge nurse called my equipment company and they are working on getting the necessary equipment. The chest tube requires a constant suction - so I'm not sure how they do this at home. I fully expected to hear that it doesn't exist - so I was very glad to hear that they are working on that. So, the goal is to get the equipment to the hospital sometime this week. Hook it up and watch and make sure it works okay for 24 to 48 hours. Get me and our nurses trained on it. And then, HOME!!!

I cannot tell you how incredibly happy I will be to bring her home. I know that we won't be able to do much once she's home since she'll be on continuous feeds 24/7 and the chest tube is a very short leash. And there will be other kinks. Like if I have to take her back if the tube gets clogged. But, who cares! I just think we will all be so much happier and that has to make a difference in her healing. At first, the discharge nurse said that they were going to try to get her home by Mother's Day. How thoughtful are they? But the equipment company has to get the equipment from somewhere else and that's going to take a few days. But, I've been around long enough to know to believe it when I see it. So, I wasn't disappointed or surprised when she said that wasn't going to happen. So, that's the scoop. Exciting stuff, huh?

Well, thank you for everything. Please keep your fingers crossed and pray that everything works out for us next week. Thank you!!!
-Christy

Friday, May 11, 2007

Pampered Chef Fundraiser #2

PAMPERED CHEF FUNDRAISER

The first one was a success, I hope this one is even bigger!! There is an online Pampered Chef fund-raiser being held for Harlie that will run until Monday, June 4th. Just like the one held in December, all of my commission will go to the Holton family for their medical bills, or whatever else they need. Thank you in advance for your support! There are three ways to help: #1. Please copy and send this blurb to all of your friends, family, co-workers, and neighbors. You'd be surprised at how many people who might not know Harlie would still be willing to help. #2. Place an order, (instructions to follow). #3. Book a catalog/online show. For every "booking" received, The Pampered Chef donates another $3 to Harlie. I know it doesn't sound like much, but it can add up. If anyone wants to book their own show, I can mail catalogs or the show can be done online, just like this one. Things to know before placing an order: We have 45 new products that became available March 1st and 5 even newer products as of May 1st. If you have any questions, e-mail me at ginabarnes@comcast.net How to order: 1.) Go to my site: (there is a link in "My Favorite Links")www.pamperedchef.biz/ginabwithpc 2.) Click on "Order Products" at the bottom of the page. 3.) Go to option 1. "Already invited to a show" Type "Harlie" in the first yellow block, then hit search. 4.) Click on "Harlie/Christy Holton" in blue. Start shopping!! I think the online catalog is the easiest way to see everything. (Click on the pink button "shop catalog.") Other information: * Show closes on June 4th so you will get your Father's Day orders in by June 12th or 13th. * Spend $60 in product value (not including shipping and tax) and receive one BBQ Basting Bottle FOR FREE, $14 value!! Go to the Guest Special section on the website to see. The item # is GM04. * Please choose to have your products shipped to your own home. (Combine orders with friends to save on shipping.) Here are the shipping costs: up to $19.99 --> $6.00 $20 - $29.99 --> $6.75 $30 - $39.99 --> $7.75 $40 - $49.99 --> $9.00 $50 - $64.99 --> $10.25 $65 - $129.99 --> $14.00 $130 and over --> 11% * This fund-raiser is a great way for you to prepare for the grilling and outdoor entertaining season. * We have many products priced under $15 that are perfect for teacher's end-of-the-year gifts. * When you place your order, you can use your credit card and feel safe knowing it is a totally secure transaction. * If anyone reading this is considering becoming a Pampered Chef consultant, I would love to answer any questions you might have. I love the flexibility and FUN in doing this. It works great as a part-time, full-time, or hobby job. If you sign with me, I will give you a present when you qualify. And yes, we can be on the same team from different states. :-) Thank you for your time. Let's all try to help this wonderful family lighten their financial burden. And let's all continue to pray for Harlie. Thank you again! Gina Barnes, Independent Kitchen Consultant The Pampered Chef www.pamperedchef.biz/ginabwithpc (301) 570-0206 Knead dough? Talk to me about our part-time, full-time and hobby opportunities!

Thursday, May 10, 2007

Teen golfer with single ventricle heart

This is an interesting article about a girl with a similar heart as Harlie will have. They were born with different defects, but in the end, Harlie will have similar heart function - single ventricle - and similar circulation. I know it is fairly long, but the end of the article is especially good. It talks more about living with a heart defect.

TEEN GOLFER PLAYS ON DESPITE HEART DEFECTBy Jill Lieber Steeg, USA TODAY
ENCINITAS, Calif. — MacKinzie Kline knows all about climbing mountains.Born with a complicated heart defect, heterotaxy syndrome, she's missing a pumping chamber, the right ventricle. "She doesn't have as much oxygen in her blood as a normal child, so she always feels as if she's exercising at altitude," says John Lamberti, her heart surgeon at Rady Children's Hospital in San Diego.

Her parents introduced her to golf when she was 5½, figuring it was the most sedate sport. In 2006, she was the No. 1-ranked 14-year-old female golfer in the world, according to the Golfweek/Titleist Junior Amateur Rankings. Last summer, after the U.S. Golf Association allowed her access to oxygen on the course, she qualified for the U.S. Women's Amateur, where the USGA also allowed her to use a cart rather than walk the course.

This month — again with oxygen and a cart — Kline, now 15, is scheduled to play in qualifying tournaments for the U.S. Women's Open and U.S. Women's Amateur Public Links, then compete in an event on the LPGA tour, the top level of women's golf. At the LPGA event, beginning May 31, she'll be the first player in the tour's history to ride in a cart during her rounds.Her story contrasts with that of male golfer Casey Martin, who six years ago won a contentious legal battle to use a cart to play on the PGA Tour because of a rare circulatory disorder in his right leg. Martin's case sparked a debate about whether providing him with a cart would give him an advantage on players who walk. But it set a precedent, and women's golf — from tour officials to the top player — has been more welcoming of Kline."MacKinzie's story is amazing," says Annika Sorenstam, the LPGA's all-time top money winner. She helped Kline get an exemption into the LPGA tournament she is hosting in Mount Pleasant, S.C., after playing with Kline in August in a pro-am event in Utah. Such exemptions let non-tour players into tour events."She has been through so much, yet she carries herself with confidence. … I admire her for everything she has been through and overcome, physically, and I am looking forward to seeing her play more," Sorenstam says. LPGA Commissioner Carolyn Bivens says, "It's very clear that, regardless of whatever challenges she has physically, she thinks she can do anything."If it seems the teenager known as "Mac" to her family and friends is always in a hurry, perhaps it's a reflection of her stark situation. Kline is about eight months removed from her third heart surgery. She dreams of the LPGA tour — she no longer plays junior events, does not plan to play collegiately and has accepted TaylorMade gear and Adidas apparel while remaining an amateur under USGA rules. But her reality is this, Lamberti says: No single-ventricle patient has played competitive sports into their teens, and "technically, she has a shortened life expectancy.""She is rewriting the history of this congenital heart defect," Lamberti says.And she presses on, resolute about making a mark on her terms. "I don't want to be known (only) as 'The Heart Girl,' " she says. "I would love to play golf like everyone else plays golf. That would make me so happy, but that's not the way it is. I want to be recognized for my talent and my hard work."Last July, at a U.S. Women's Amateur qualifier at Friendly Hills Country Club in Whittier, Calif., Kline had her Mount Everest moment. She had depleted her oxygen tank by the 17th hole, and the march to the 18th tee was straight uphill."There was a delay before us," says her caddie, Hugh Montgomery. "She actually had five minutes to sit under a tree and gather her composure. Then she parred 18 to shoot 75 to get in the Women's Amateur. It was amazing."Her mother, Elizabeth, says, "It was a great golf moment — the two of them together, carrying all this oxygen, the food and the water and the clubs. A couple of holes, he literally grabbed her hand and pulled her uphill. I thought, 'That little stinker made the cut.' "Not willing to sit and watch Kline will have a new oxygen-delivery system this year, but even that will take her only so far. The rest, her mother says, comes down to this: "She doesn't like 'No.' "Between shots, the 5-2, 115-pound Kline will hook herself to a continuous flow of oxygen from a portable oxygen concentrator created by San Diego-based SeQual Technologies. Weighing 17 pounds and about the size of a laptop computer, the device takes ordinary air, which is a mixture of oxygen and nitrogen, and runs it through a sieve, separating the two elements. The oxygen is blown to Kline through a nose tube while the nitrogen is pumped out as waste."Mac's unlike any other athlete, say, a pro football player, who can take a few hits of oxygen on the sidelines to help them catch their breath," says her father, John. "They have a pumping chamber (in their heart) that can quickly turn the oxygen in their lungs into oxygenated blood. Mac has to have a steady flow of oxygen." Kline's had three heart surgeries — the first when she was 11 weeks old and her heart was the size of a walnut; the second at 23 months. During the procedures, surgeons rerouted the blood returning from the body to bypass the heart and go directly to the lungs. Today, when she wears bikinis at the pool or the beach, Kline proudly displays the 9-inch scar from those surgeries that runs down the center of her chest.She says in many ways her heart defect has empowered her."It can make you stronger or tougher, or it can just bring you down if you let it," Kline says. "You can choose."Even after her parents steered her toward golf when she was younger, she tried to keep up with other kids on the playground and in gym class. She was a dodge ball fanatic, even though a hard blow to her chest could have been fatal."I wasn't a person who liked to sit down and watch other people play sports or play a game. I'd always try," Kline says. "When I was tired, I'd stop for a little bit, then I'd play a little more."She throws herself into her daily routine. Up by 5:30 a.m., she's at her tutor's by 6:15. (In January, during her freshman year in high school, she began independent study through Pacific View Charter School in Oceanside.) Then she has several hours of golf practice. She gets in a light weight-training session at the gym, and Thursdays she plays The Bridges at Rancho Santa Fe, one of the nation's toughest private courses, north of San Diego.During the spring of 2006, however, Kline began having difficulty focusing on her studies, feeling dizzy and fuzzy in the head. And despite using oxygen on the course in tournaments during the summer, she was struggling to finish 18 holes, spraying shots, sucking air, her cheeks forever fuchsia.She couldn't breathe."We were in denial," says her father, a real estate agent. "She's playing golf, everything's good, she looks healthy, so you think you don't have to worry anymore. But the reality is you always have to worry about it."Kline wouldn't admit there was a problem. Especially not to herself, when she was entered in events such as the U.S. Women's Open, the U.S. Women's Amateur, the U.S. Women's Amateur Public Links and the U.S. Girls' Junior Championship."We saw her pediatrician in May. She said, 'Do you notice how blue she is?' When you live with somebody, you don't notice," says Elizabeth, a flight attendant. Lamberti, the heart surgeon, recommended a stress test to measure the oxygen level of Kline's blood during physical activity. She flunked it. Her parents suggested she skip the qualifiers and undergo cardiac catheterization, a procedure in which a tube is inserted in an artery in a patient's groin and snaked to the heart so a doctor can see problems there."I told them, 'No, no, no, no. I'm going to do it. I don't care,' " Kline says. "I spent my whole season practicing … for these (events). I love these tournaments."Her father adds: "It was brutal. She wasn't going to hear it any other way. Every day, she defies the doctors. When she was born, we were told she wouldn't live past the age of 5. Everything she's doing is out of the box."So my wife and I said, 'Let her do what she needs to do.' If you don't and something happens, you can't live with yourself."Playing two days after release Her father petitioned the USGA for the use of a cart and oxygen during the U.S. Women's Amateur and U.S. Girls' Junior Championship. Initially, the USGA declined on a technicality, saying the Klines hadn't included the request on their entry forms. After media criticism and more review by its medical board, the USGA approved.Martin, now the men's golf coach at the University of Oregon, paved the way for the use of carts in tournaments when the Supreme Court ruled in May 2001 that federal law required a leveling of the playing field for the disabled, including in professional sports.Kline's experience with golf officials "shows that we are more accepting now, eight or 10 years after I went through my ordeal," Martin says. His use of a cart "didn't ruin the game. It did provide drama and interest and provide an opportunity for someone in need."In early August, Kline missed the 36-hole cut in the Women's Amateur at Pumpkin Ridge Golf Club near Portland, Ore. Later in the month, three days after playing with Sorenstam in the Nokia Champions Challenge, she had the cardiac catheterization. John Moore, chief of cardiology at Rady Children's Hospital, repaired a hole in her heart as part of the catheterization procedure. He also discovered a blood clot attached to her heart, which is being treated with medication because an operation would be too risky."We don't have long-term data on single-ventricle patients beyond 20 or 30 years," Lamberti says. "But we know that patients can live that long, we just don't think she's going to play golf at that point. The way we have them hooked up, it's not normal circulation, and it doesn't get better."Mac has a certain exercise capacity. There's no way to add horsepower to her motor. Ultimately, we have an ace in the hole — a heart transplant, or even a very small implantable artificial heart."Doctors told Kline she would always have to play tournament golf with a cart and access to oxygen, she could no longer participate in her favorite hobbies (surfing and riding roller coasters) and she should plan on several weeks' healing time. She was released from the hospital on a Saturday and was golfing by Monday.Significant fundraiser In her spare time, Kline gives motivational speeches and has written a book, Mac's Secret Weapon. She wrote it when she was 8 in collaboration with her first nanny, Marjorie McNamara, and Kline says she always reads it the night before tournaments. It's about living a well-rounded life, being a good sport and a grateful person and not getting mad at life's bad shots.Since 10 she has been national spokeswoman for the Children's Heart Foundation. She set a personal fundraising goal of $1 million and at last tally was at $750,000. The tournament in Mount Pleasant plans to make a donation."She has created an incredible amount of awareness of children with congenital heart defects and what can happen when they put their mind to something," says Bill Foley, executive director of the Children's Heart Foundation in Lincolnshire, Ill. "She has also assisted the CHF in funding an incredible amount of research." When she reaches $1 million in funds raised, Kline says she'll follow her heart — and keep going."I love seeing people happy all the time," she says. "It's weird, but it's what I like to do. I'm alive, so I'm happy. Being alive, playing golf well and having the platform to help people, who wouldn't be happy? I'm just a very lucky girl."THE KLINE FILE Age: 15 (born March 30, 1992)Home: Encinitas, Calif.Family: Parents John and Elizabeth; 9-year-old sister MadisonOn the course: Won the 2002 and 2003 California State Junior Girls' Championships at 10 and 11 (14-and-under division).At 12, qualified for the U.S. Women's Amateur Public Links, made the cut to 64 players, then lost in the first round of match play.At 13, qualified for the U.S. Girls' Junior Championship with the lowest score in the nation: 71.At 14, qualified for the U.S. Girls' Junior Championship (made the cut to 64 players; lost in first round of match play) and the U.S. Women's Amateur (missed the cut to 64 players).In April 2006, she was the top-ranked 14-year-old female golfer in the world, according to the Golfweek/Titleist amateur rankings.Source: USA TODAY research

Tuesday, May 8, 2007

Update

Well, the x-rays they took yesterday showed an effusion. The chest tube is still draining, just not as much as it was. It is possible that there needs to be a certain amount of build-up to get to the tube. The tube is a pig-tail drain (shaped like a coil) and is located in her upper back area of her chest. So, when she is sitting up, it makes sense that it might not drain as much since the fluid goes to the bottom of her chest. And because of her continuous feeds and reflux, she needs to be elevated all the time. So, until she shows signs of respiratory distress (which we know all too well) there's really nothing to do. Just watch and wait. And pray that we don't get kicked out of the PICU. Since she is "stable", it is possible that if they need the space, we could get moved to the step-down unit.

Unfortunately, that would not be a good place for someone staying long-term. It is all open, separated by curtains. So, for me, who is there every day, and sleeps there every other night, staying there would be even more uncomfortable. Her doctors say that they are going to try everything to keep us where we are now. They are so understanding that this is hard enough as it is, to be over there would be even harder. Plus, all the nurses and doctors know her here.

Anyway, that's it. Thank you for your continued thoughts and prayers.
Take care,
Christy

Sunday, May 6, 2007

Nothing New

Well, nothing new to report on. Just a nice quiet weekend. We had a small gathering at our house for Murphy's 3rd birthday. (His birthday is actually on the 11th.) I can't believe that he is 3.

Anyway, Harlie's draining has decreased. It was about half today as it was yesterday. So, they are going to take some x-rays in the morning to see if it is clogged again. Please cross your fingers and pray that it isn't clogged and that it is starting to decrease on its own! We are SO ready to bring her home so we can be a family again!

Well, I hope you are all doing well. Thank you for all your support and prayers.

-Christy

Thursday, May 3, 2007

She found her feet!

Hi everyone,

Well not too much to report on, really. Just hanging out watching and waiting. Her drainage seems to have decreased a bit. So, they took some more x-rays just to make sure that the drain wasn't clogged like before. And they actually looked really good. So, again, trying not to get my hopes up - but still can't help it. At some point it has to stop...hopefully it will be soon.

Harlie has been very playful the past few days. When she is happy, I am happy. On Wednesday, Harlie finally found her feet! It was so darn cute! I was wondering when that would happen. I caught it on video and took pictures. I'll post it in the next set of photos. It is so weird how the little things mean so much when it comes to her. When Murphy found his feet, it was just part of the deal. But when it comes to Harlie, I never know what's going to happen or not happen. It really makes the good things so much better.

Oh, this morning when I came in, Harlie was wearing an adorable little comfy dress that I had never seen. She looked so cute (because normally she's not wearing any clothes). Jennifer, her nurse, got that dress for her. How nice is that?!?! I love that they love her here. It makes our stay so much better. Well, thanks again for all your thoughts and prayers. We really appreciate them!

Love,
Christy

Wednesday, May 2, 2007

Chest Mass Anniversary

Well, it was exactly one year ago today that we learned of Harlie's chest mass. I remember it like it was yesterday. I think getting past a few of these "anniversaries" will be big steps for us. Each one just proves how far we've come and how much we've accomplished.

Everything is going okay here. They did an EKG yesterday. I think everything is okay. They will continue to monitor her heart block and when and if necessary, they can hook up her pacemaker. No time soon they say. So, now we just wait and see what happens with this drainage. They want to give it at least one or two weeks so they can have some numbers to work with. I know that yesterday she drained about 100 mls. Hopefully over time, the daily amount will start to decrease.

Well, that's it for today. Thank you for your continued support and prayers.

Take care,
Christy