Katie's 4th Birthday....

August 17th 2004 was one of the most amazing days of my life. It was the day my 3rd daughter was born, and because I was under general anesthesia when Molly and Emily were born, it was also the only time I ever heard my baby's first cry. Even four years later, I get choked up thinking about that moment. Kate was due on August 25th 2004, but as it was to be my Emily's 1st birthday (and knowing the mixed emotions we would undoubtedly have) we felt Kate - being her own special person - deserved her own special day! We could not have been more accurate! I planned a repeat c-section for 9:00am on August 17th 2004, avoiding also Molly's birthday on August 19th. It goes without saying the birth of any child is a miracle, but to finally bring home a healthy baby following two consecutive losses was beyond a miracle for me. The picture above was taken almost at the exact moment they put Kate into my arms for the first time, and I think we spent the next hour crying together! --- I was crying for joy, but I'm still not she what she was crying about! I am thankful beyond explanation for my healthy daughter, and never do I take one moment of her life for granted. Happy Birthday to my "Rainbow Baby" Katie. THANK YOU for coming into my life, and helping in so many ways to heal my heart. You bring me joy beyond explanation, and my life is richer because of every moment spent with you.

A Different Child

People notice there's a special glow around you.
You grow surrounded by love, never doubting you are wanted…
Only look at the pride and joy in your Mother’s eyes.

And if sometimes between her smiles there’s a trace of tears,

One day you will understand.
You will understand there was once another child, a different child
who was in her hopes and dreams.

That child will never outgrow her baby clothes.

That child will never keep her up at night.

In fact, that child will never be any trouble at all -

Except sometimes, in a silent moment

when that mother misses so much, her different child.

May hope and love wrap you warmly,

and may you learn the lessons forever

of how infinitely precious, and how infinitely fragile

is this life on earth.

One day, as a young woman you may see another mother's tears.

Then you, and you alone will understand

and offer her the greatest comfort…
When all hope seems lost, you will tell her with great compassion

"I understand how you must feel-

I am only here because my mother had the courage
to try again."

The "people trap" built by a mouse...

We are home from Disney World, which is the place my oldest and dearest friend refers to as "The people trap built by a mouse". I am now convinced she is correct. We had the most wonderful time, although I will be the first to admit that seven days at Disney theme parks by myself with an almost 9 and almost 4 year old is WAY too much! Next time we will do the "park hopper pass" and stay for only 5 days. Below are a few photos, and brief explanations - as we had Waaaaaaayyy to much fun to discuss it all here. Anyone who wishes to have further details should just call me and I'll be glad to tell you all about it!



This is the Spectromagic parade. I am amazed at how much my girls still love people - in BIG costumes! I was nearly deaf at the end of every parade because both girls were screaming to the characters as they were waving. My favorite though was Kate screaming "Mer-ry-wea-der" to the Fairy God Mother "Merryweather" from Sleeping Beauty. I was also amazed that my children knew EVERY character! I knew they were well versed in Disney trivia, but to get EVERY character correct really surprised me! Kate commented to one lady at the airport yesterday "Did you know Mickey Mouse is really real? .....It's true, he is - and he is HUGE!!!"

This is a great picture of Molly and Kate at Disney Hollywood studios - formerly known as MGM. Molly is in her Jasmine costume, and Kate is in her Minnie Mouse. It was hot and Kate was getting tired - but they were still having fun.

This is Molly having her "Princess Makeover" inside Cinderella's castle. I TOTALLY recommend this experience, as it was FABULOUS! She was Pocahontas, and was having her "Fairy Godmother in training" compare her make up colors to that of Pocahontas on her costume. Molly is VERY detail oriented and wanted to make SURE she looked JUST like the character.

This is just a GREAT picture of my girls on splash mountain. By day six, Kat was tired of having her photo taken - obviously.

Above is Kate's finished makeover. She was SO sweet and SO adorable. Her hair was pulled up so tight though, it only lasted about an hour and a half before she pulled it down. Still, I got a BUNCH of great pictures before she got hold of it...

Sweet Molly's makeover lasted the whole day. They put a hair piece on her head and she just thought that was fabulous. She looked beautiful, and she felt beautiful. She is SUCH a little lady.

This is the last photo I'm posting for today: it's of the girls meeting Kate's hero, Cinderella. Kate and Molly both got a lot of attention, being all dressed up. People were asking to take their pictures and everything.... Molly especially got the attention, because she was the only Pocahontas they had ever done, in a full year of being open at the boutique! She thought that was great. The park "cast members" (They're NOT to be called employees) all greeted the girls as "princess" or "Cinderella/Pocahontas" and by day two, Kate was sick of it! She actually got ticked at one point and said to one cast member "WHY does everyone keep calling me that?!?!? I'm Katie! Just-Plain- KATIE !!!!!" .....Molly, of course - loved the attention.

We hit all four theme parks and every single ride at Magic Kingdom (except for space mountain) at least twice! By Tuesday (The last day) we were all tired. Molly had a GREAT idea and said "Mom, lets just go on 'laid back' kinds of rides today, OK? ...Lets hit Small world - it's pretty laid back." I agreed - and Kate (in a disgusted tone) interrupted almost immediately by saying "What are you guys talking about?!?!? Small world isn't "Laid Back".... Haunted Mansion is "Laid Back" - remember?!?!?" *for those who do not know, the haunted mansion ride tips you backwards at a 45 degree angle for a portion of the ride... making it literally "laid back"! That moment was one of the best parts of the trip for me. One of the other best parts was when Molly and I each had a frozen raspberry lemonade at the rain forest cafe while Kate was napping. She was asleep for nearly 3 hours, and Molly commented "For a little while, it was like it was just the two of us on vacation, and it was really nice." She was correct. We shared a "big people" afternoon together, and I was reminded of how grown up my little girl actually is. It was bitter sweet...

All in all, we had a wonderfully fun and exhausting trip. I am back to work today and just trying to make it through the day - until I can nap after Molly's cheerleading practice this evening. I have SO much to do and absolutely no time to do it in....

And they're off.....

Well, almost.... We're heading out to Disney in just under 48 hours, and so this will likely be my last update before we go. The girls are busy watching their free Disney Vacation planning video (I think we've seen it 100 times now) and making lists of things they would like to do. We have a complete schedule of the theme park operating hours - including "Extra Magic Hours" and have been watching the weather forecasts closely, for planning purposes. So far it looks like RAIN on my birthday - but we'll be spending it at "The Happiest Place on Earth" so I very much doubt a few showers will dampen our spirits. I will let everyone know how the trip went upon our return. Until then, take care and be safe!!!

Sweet success!

This is my NEW favorite picture of Kate and Darwin! Let me back up and say Darwin will eat anything. If it's green, he'll try to eat it. He is actually pretty good at inspiring us to keep our floors impeccably clean, because if it is on the floor Darwin will try to eat it! If that doesn't work, he'll definitely climb on it and we can not risk him getting tipped over!

Last evening, I allowed the girls to have a "special snack" in the living room. It was chocolate cake, and Kate LOVES chocolate cake. She made the mistake of walking away for a second and returned to discover Darwin just inches away from her plate. I snapped this photo as she was dashing away and giggling with delight - cake in hand.

Darwin enjoys a bowl of buttered noodles - again, compliments of Kate.

Darwin acts like "the family dog" after a pizza party, cleaning up the leftovers. I allowed him to gnaw on this pizza crust just long enough to snap a photo, and then I took all of it away from him.

"Note to self....."

I just have to share what Molly created yesterday:

Molly is quite the artist, and I truly believe she possesses more artistic talent in one pinky finger than I do in my entire body! Molly sketched this herself yesterday afternoon. It's a Pegasus, and Molly has a true love for horses so she draws them often, and VERY well. If you look very closely at the bottom left hand corner of the page, you will see where she has written "Note to self".... and she has several things listed. I had to laugh out loud when I saw that, because anyone who knows me will recall that is one of my most widely used phrases. I even have a note pad that reads "Note to self" and at the bottom is a box where you can check "Received by self". My sweet Molly may look just like her father, but she is ME through and through! ...... I just LOVE it!!!

Caridology lesson and revalations about HLHS.

To any physicians who may be reading this, I apologize in advance for my gross generalization. My friends, these are Heart Valves. At least in my home yesterday, they were what I used for a demonstration of what heart valves look like and how they work. Yesterday afternoon I overheard my girls talking about Emily's heart and asking what "exactly" was wrong with it. Their Aunt on their father's side had told them our Emily had died because of a hole in hear heart. This was not even close to the issue, but I give her credit for trying to help them understand. Emily died because of several issues, and she was actually born with 3 separate "Terminal" heart defects. *FYI, the probability of a baby being born with one defect is 1/400. The odds of a baby being born with ONE "terminal" defect are 1/800. Emily was born with 3 separate (and we were told, unrelated) "Terminal" heart defects. To the knowledge of her cardiologist, she was the only baby to ever be born alive in the united states with her specific series of defects. However, for explanation purposes, I tell people that Emily died primarily because she had HLHS, which is Hypoplastic Left Heart Syndrome. Basically the left side of the heart (which is what pumps the blood to the rest of your body) doesn't form, and the baby is born with what is essentially a two chambered heart instead of four. During my demonstration yesterday, I drew the chambers on paper so the girls could better understand. I also drew the narrowed aorta and explained the problem by demonstration with a bendy straw. However, it was my explanation of AV (Aortic) valves (and problems associated with them) that impressed and delighted even me!

Below are my three heart valves:


This is a standard Tri-cuspid Valve, which is what most people have. We ran water through it, and both girls noted how it held water beautifully, releasing it only when I opened the valve. It keeps the blood in you heart moving in the right direction, and Molly and Kate were delighted that they both have THIS type of valve in their heart.

I then explained this next valve to be a "bicuspid valve" and showed them how it works. I have a Bicuspid (AV) Aortic Valve (the girls now know this) which has been giving me some trouble as of late. (The girls do NOT know that, but have seen me wearing a halter monitor, etc.) I used the water demonstration to explain that a Bicuspid valve can work just as well as a tri-cuspid valve. They were delighted with this result.

Finally, I showed them Emily's valve, pictured above. Emily had a Bicuspid Aortic valve (AV valve) with "Aortic insufficiency". Her valve was leaking and very deformed, and the girls were both shocked to see that the water ran right through the valve, and just sloshed around in the sink (which for our purposes represented the heart.) I think the visual representation was very helpful to Molly, and I know Kate just enjoyed playing in the water, and with the valves.... as evidenced by this next picture. Kate and Molly then proceeded to stuff the "valves" down their shirts, and run around the living room screaming "I have a heart valve! I have a Heart Valve!"

I am glad that my girls are processing, and reprocessing the events of our lives. I explained to Molly this is VERY normal, and invited future conversations about the subject. I told her I KNOW her questions will become more and more in depth as she grows older, and let her know I am ready and very glad to answer any questions she has. She doesn't ever have to worry about making me sad by asking because I LOVE to talk about Emily, and feel it's important that they know what happened so they can be educated in the future.

As I was going through my own heart testing back in April, I learned a few things about my heart problems, as they relate to Emily's condition. This information has set me back a bit in my grieving process and honestly, has been very difficult for me to handle - although I continue to try. As a result I have only shared it with a few very understanding people. With that said THIS INFORMATION COULD BE SENSITIVE....

Since April, I have learned:

• HLHS is not caused by a "fluke" as we were told five years ago. Within the past year, they have discovered that HLHS begins at about 11 weeks and is caused by a stenotic AV valve. The AV valve does not open properly, and the left side of the heart does not form because of the issues with blood flow.


• AV valve problems are also NOT a fluke - most often (but not ALL the time) they are genetic. The gene is passed down on the Mother's side, and so my probability of having child with an AV valve defect ( because I have one myself) is 25-50%. This helps me understand why I have had 5 pregnancies, and have brought 2 children home. Apparently, I hit the 50% mark.


• Molly and Kate's probability of having a child with an AV valve defect is still 25%, even though they have no problems themselves. This is due to the fact they have a full sibling who died of this defect. I will have to find a way to explain this to them in the future. I'm still thinking about how I might approach that conversation, when the time comes......


• 7 years ago, HLHS was a death sentence, and there were very few surgeries to repair this defect. The surgeries that were available typically had "less than ideal" outcomes. Just 5 years ago (when Emily was born) survival rates for babies with HLHS was 20%, and surgical outcomes were still "Less than Ideal." TODAY, survival rates for HLHS are up to 70% - which I find amazing.... but I am still sad and even a bit angry at times that my daughter could not have been part of that 70%.


• There is a "fetal surgery" that can be done at about 12 weeks gestation for babies who are diagnosed in utero with a "stenotic AV valve". This surgery will PREVENT HLHS from developing! A catheter with a balloon is inserted into the infant's heart and essentially, it "blows" the AV valve open. At birth, the baby requires one surgery to replace the AV valve! *In 2003, the AV valve could not even be replaced in infants...today it can, and is done routinely.


• There is a push by perinatologists to perform fetal echo cardiograms as standard procedure around the 12 week mark for Mothers who have had a child with a Congenital Heart Defect. I fully support this movement.


• Molly and Katie thoroughly enjoy creative demonstrations about how parts of their body work. I have learned I can explain the death of their sister in a very "matter of fact" way using McDonald's Sundae lids, and not even cry while I am doing it! I have also learned, no matter how strong I am during these discussions with my girls, after they go to bed that night I will inevitably break down, with a pain in my heart I had almost forgotten existed.


• I have learned that after five years of grieving, I still blame myself for the death of my daughter. I have been told that I shouldn't - but I do.


• I have learned that guilt is perhaps one of the most painful companions of grief.

Uplifting...

After Yesterdays post, I wanted to make sure I added something uplifting today, so people wouldn't quit reading! I will say we are now just one week away from our greatly anticipated Disney Vacation! Eight days and seven nights and we are meeting up with good friends of ours who live in Florida! I'm SO excited.... we'll all have SO much fun! The girls will be having "princess make overs" (dresses and all) inside Cinderella's Castle on the morning of my Birthday. It's called "The bibbity-bobbity-boutique" and Kate already knows she is going to be Cinderella. Molly is still debating on which princess she would like to be... Pocahontas, Belle or Jasmine. These are tough decisions you know. On a positive note, Emily's grave was fixed yesterday afternoon and it looks very nice again. AND tonight is "Tactical Tuesday" so if you've read my opening post, you know where I'll be spending my evening!...and after this week, I can sure use the stress relief! Molly had an appointment with the orthodontist yesterday and the GOOD news is that she does not need 2 stages of treatment. She only needs braces in 2 to 2.5 years! YAY...... That's super exciting! We were ALL pleased with that info - but Molly was especially pleased.