Happy Belated Heart Day Erin!!!

Three years ago, on Sept 19th, our little Erin had her heart repair (VSD and PDA...for those who have had to learn new meanings to certain letters of the alphabet).  This year the day passed by without a grand celebration.  I suppose that happens as the years pass, and I suppose that's also a good thing. Erin is fortunte, thanks be to God; she has no lasting effects from living with a large hole in her heart for the first six months of her life.  Had she been born 50 years ago, she may not be here today. (Open-heart surgery was not always done for those with Ds, even when the technology was available. Thankfully, that is not the case today). Even though we did not have a grand celebration, our hearts are filled with gratitude once again.  Parents just never foget having to watch their child go into heart failure and then endure open-heart surgery.  Thanks be to God, most kids come out on the other side, quite miraculously, stronger than their parents ever imagined they could be. So, once again, we offer prayers of thanksgiving for our little Happy's complete recovery!  We also include prayers of thanksgiving for little Zelie, six months old, who had her heart repair last month.  She is the youngest child to some friends of ours.  That extra chromosome has a way of bringing people together...some of the best poeple we have met!

And now, some recent photos of Erin, showing off that strong heart...

Such a little personality...

She always has to smell the flowers....

We Have Winners!!!

The grandmas, wouldn't you know, along with Bridget correctly guessed the use of the mystery white item in the post below. Grandma M and Bridget guessed in person while Grandma D's guess in the comment section was exactly right. The white item is the cloth used to repair the hole in Erin's heart. It is made of waterproof Gortex...the same material that is used to make many winter jackets or rain gear! During the surgery, the surgeon cut a piece the size of the hole in Erin's heart, stitched it in for the repair and then gave us the little left-over "souvenir". It is a reminder to us of Erin's successful heart repair and of the God-given talent of the surgeon who held her heart in his hands two years ago today. Thank you God!

Happy Heart Day Erin! Your heart sure is sweet!

Mystery Photo! (Updated)

We have a little contest for you today...Who can guess what the little white item is in the photo? My kids may not guess cause they already know. But for those who have no idea, start guessing! You can tell the size by noting Erin's little toes in the corner of the photo. The only clue, for now, is this: Mike carries this item around in his wallet. So, don't be shy (use the anonymous option for posting if you don't have a blogger account) and leave a guess in the comments!!

**9/18/09 Update with more hints**

Great guess, Monica! But that is not what this is. I will give some more hints:

Hint #1 -Mike carries this in his wallet, not because it is useful to him, but because it has sentimental value

Hint # 2 - It is a flexible type of cloth. It has no writing on it.

Hint #3 - Our item is a "left-over piece". The cloth can come in different shapes and sizes. It is the USE of this cloth that makes it significant for our family (and some other families we know). In fact, if someone found this item on the floor, without knowing what it was, he/she would probably just throw it in the trash LOL.

Hint # 4 - I will reveal what this item is, and why it is meaningful to us, tomorrow - 9/19/09 (or sooner if somebody guesses correctly). Yes, that is a hint.

**9/19/09 Update**

Ohhh, good guess, Anonymous! But that is not it.

One last BIG hint, just because I think this is fun...

Hint #5 - While all the members of our family are thankful for this little white cloth, one member of the Party of Ten, in particular, has been holding this item, very dearly in her heart, for exactly two years now :)

Guess Who Had an Excellent Heart Check-Up??

Yes, our Erin did! We went for a visit to see Dr. S, her cardiologist. While we didn't expect anything to be different, it always does our hearts good to hear that her heart is good! The medical staff tend to remember their heart babies and they all loved seeing Erin. Dr. S even cancelled her echocardiogram this visit because her heart sounded so good and her EKG was perfect. We do not go back for one full year.....yippee!


Moira was there to snap some photos...
She was a bit leary about some of the procedures....
The pulse-oxygen monitor tickled her toes.
This is the EKG procedure which had a funny ending. When we put the EKG monitors on, we called them "stickers". I was trying to make it positive, saying, "Oh, Erin, look, you're getting lots of stickers today!". After we were all done the nurse brought the box of real stickers over to her, offering her one as a reward. Erin signed "No". I think she thought she was going to have to have another EKG! I have not seen her turn down stickers before.
Afterwards we met up with some friends at a park...



(To see more pictures from Erin's park date, check out Logan's blog!)

Happy Heart Day Erin!!!

Today is a day we will always celebrate! One year ago today we were at Children's Hospital of Wisconsin for Erin's open heart surgery to repair her ventricular septal defect (VSD), a hole between the lower chambers of the heart. Dr. Tweddell, Erin's surgeon, did a fabulous job and we will always be thankful for his skill as a top notch surgeon.

For memory's sake, here are some pictures from a year ago....

Here's Erin right before surgery


And right after...


And here she is now watching her siblings out the window, wishing she could be out joining in their fun! What a difference a year (and a healthy heart) makes. Thank you God!

Another Great Heart Check-Up For Erin!

Did you ever think that a large scar could be beautiful? I'm not sure I would have before Sept. 19th of last year. Today was Erin's heart check-up at the cardiologist office. After she had been thouroughly checked out and we were assured that her heart was still working perfectly, I was able to chat with the cardiologist about lighter issues. She called this the "fun" visit. As we were chatting, she commented on how nicely Erin's scar had healed. As she studied it, she said she wished there could be a way to avoid the scar, but that was just impossible (I have long ago picked up on that fact that she is a perfectionist. Fine by me...I'll take a perfectionist cardiologist any day). I explained to her how I thought Erin's scar was beautiful, a true work of art. I will always be thankful for that scar. Where would we be today if it weren't for the perfectionism of the cardiologist, and the God-given skill of the heart surgeon who left a three inch scar on Erin's chest? For us, it is a reminder of the day our little Happy got a new heart, and through that, the rest of our hearts grew a little closer to God. What a beautiful scar!




Erin's next scheduled cardiac appointment is in one year. Now that's music to my ears!!!

A Celebration For Healthy Hearts!

Herma Heart Center (from Children's Hospital of WI) has an annual event for children who have gone through open-heart surgery. It was, of course, our first year participating, and we all had thankful hearts for our little Erin!! We had a lot of fun at the event which was at the local children's museum. We met many families and even recognized a few.


The kids took full advantage of all that was offered...





Mike strategically placed the bench here so he and Erin could take full advantage of the fish.




Nothing like playing in water....






And if you think the excitement ends there, you are mistaken. On the way home we were pulled over by a police officer, sirens and all. Moira, our camera happy girl, didn't waste any time snapping a picture of the confused faces in the back seat. Of course she put the camera away when the officer started shining his flashlight into the car :) As it turns out we had a back tail light out. Whew....and you all thought Mike was speeding didn't you? ;) Thankfully, we just got a friendly warning.

Where Did the Year Go?!

We recently got a new computer, and with that comes a lot of transferring data from the old system to the new system. So, I've been busy going through a lot of photos and organizing them into files on the new computer. In doing so, I've been reminded of the amazing year we've had!

A year ago at this time I was seven months pregnant with Erin. My biggest concern at that time was that she was breech. I remember being so worried about her position and praying that she would flip (and she did!). It's funny to think about that now and giggle. Little did we know that Erin's little breech stunt was just a little test run for her parents.

Throughout this past year Erin has taught us so much. In March, when we welcomed Erin into the world, she taught us all about Down syndrome and what it means to have that little extra chromosome. Soon afterwards, she taught us unconditional love and a love of God to a greater extent than we knew before. In May, we discovered that Erin's heart came with a little extra something too - a hole. As a consequence, by four months of age, Erin had taught me how to be a nurse. I learned how to ng tube feed, give medications around the clock, take oxygen levels, measure breathing and heart rates, and how to recognize medication toxicities. She then taught us the symptoms of heart failure, first hand. Erin taught our whole family a new alphabet; we learned the meaning to a whole slew of letter combinations, such as, VSD, ASD, PDA, DS, PT, OT, ST, NICU, PICU...and the list goes on. She taught our whole extended family patience, in September, when we were informed that her surgery date had been bumped to a date later in the month. Then, during the week of Sept. 19th, Erin taught us how to pray. Mike and I went on a powerful spiritual retreat that week which was located at The Children's Hospital of Milwaukee. The first meditation took place in the waiting room of the OR, and the remaining meditations took place on the PICU floor. It was not my favorite retreat but it was certainly the most powerful and the most rewarding. The main spiritual exercise for this retreat consisted of handing our six month old baby over to a complete stranger who would hold her heart in his hands. Through it all, Erin taught us to pray, "Jesus, I trust in you." When we arrived home after surgery, we found ourselves a little discouraged that she was still on the ng feeding tube. With a little determination, and lots of prayer, she began eating like a pro, in less than a week. It was then that she taught us to never give up and to have hope. Throughout this past year, Erin has taught us to be thankful for the little things as well as the big things. And if there's one thing I'm sure of, it's that she still has a lot more to teach us. We can't wait to see what she has in store for us!

While Erin has given us wonderful gifts and blessings this year, so have many of our friends. They have taught us how generous they could be with their time, meals and prayers. We are so thankful for all of our old friends, and for our new friends. These new friends feel like old friends, which has just been a bonus!

I couldn't end this post without at least one pictures. Oh, I almost forgot! Erin has taught us one more thing: Cuteness is found on the 21st chromosome, which means she has an extra dose!

Erin's Heart Check-Up

Today Erin had her two month post-op heart check-up. They look and listen very closely at this visit to make sure the healing has gone well. The cardiologist listened to her heart and lungs for murmurs and fluid. Then the tech did an echocardiogram to make sure all the blood was going where it was suppose to be going, and that the patch holding the hole together still looked fine. They took all of her vital signs, which were excellent. Although she's still small, she is moving up on the growth charts for all three measurements: weight, height and noggin. In fact, she's grown 1 1/2 inches since her surgery. She's at a perfect 50% for the Down syndrome growth charts, and she's getting nearer to the 5% for the regular growth charts. (If she keeps going in this direction, she may even be on the typical kid growth chart by her birthday). After all this, the cardiologist walked into the room and said, "Well, I'm not sure how to tell you this, but Erin's echo revealed just what I was suspecting." My heart sank. I thought...what could be wrong? Then she finished up her sentence..."Just as I suspected, we don't need to see her for six months!" Music to our ears and hearts!!! Nothing but great news. Thanks be to God!

And to see a visual difference heart surgery made for little one, check out these before and after photos.  Notice how much her face has filled out.  And her coloring is SO much better (although it is hard to tell from the photos)...

Just before surgery

Two months after surgery

It's Been Over Two Weeks!

It's hard to believe that Erin's surgery was two weeks ago Wednesday. She continues to do fabulous, eating like a champ. Yesterday she had her two week post-op visit with the cardiologist. She had a great check up. An EKG was done to make sure the electrical system of the heart was not effected by the surgery, and it was not. She also had another chest exray to look for fluid. She's had several of these done now.  As you can see, they're done a bit differently than what I was used to.

Here's a couple of pics of the little predicament that Erin found herself in for the x-ray (these pictures were actually taken before surgery, but the one she had yesterday was very similar)...





Don't worry, it's not nearly at torturous as it looks :) I don't know why, but I find these pictures to be so cute.

Everything went beautifully with the post-op visit. She does still have a small amount of fluid in her lungs, which is quite normal, and she will continue on the diuretic, at half a dose, for another month. The other good news is that her heart is already smaller in size, her liver is on its way down in size, and her heart has no murmur or gallop. It's working perfectly. I hope the only gallop I ever hear again is the pitter-patter of her little feet running around our home.

On another note, I just wanted to say thank you, once again, to both of our moms and Kelly and Kelley, for all their help while we were away at the hospital. Everything went so smoothly while we were gone. They all went to Mass on Wednesday, just as Erin went into surgery. It was a worrisome day, and they prayed and prayed. But at the end of the day we were all relieved, and there was joy.

The rest of the week they had a lot of fun!

They went to Bay Beach...






They made five new Irish dance bags for the girls (here's cousin Colleen modeling hers)...



And they (well, some of them) got really dirty...



They even weathered an evening with no electricity for six hours! Imagine...six hungry, active kids, in the dark, with no electricity. The grandmas didn't miss a beat. Way to go Grandmas!!!

A Visit With Great Grandma Dillon

This photo was taken the night before Erin's surgery. Great Grandma Dillon lives so close to Children's Hospital, we just couldn't pass up the opportunity to visit. It was the first time Grandma was able to meet Erin. After an all day long pre-op, Grandma Dillon, Grandma Delaney, Mike, Erin and I had dinner together. It was a treat and a nice distraction for all of us!

We're Celebrating!

No, I'm not talking about the Badgers' win yesterday. It's much bigger than that! We're celebrating our "new" little baby, with a perfectly formed heart, who is now eating without the ng tube!!!  I have to admit, I was skeptical that she would take off so quickly. The cardiologist had predicted this, but I'm still just in awe that it just "clicked" and she's eating like a pro. We had been working on making Erin's eating sessions positive again to regain the association of pleasure with eating. It took just a few days and she was no longer crying at the sight of her bottle. I would sing to her, cuddle her and rock her. The kids would get her to laugh by making goofy faces and sounds. And we all prayed.  God intervened in the strangest way, proving He does in fact have a sense of humor :) Here's what happened: Friday night Bridget was sitting on Erin's ng tube, but didn't know it. Eileen came along and picked up Erin.....and out came the ng tube! Ouch! Because the reinserting of the ng tube is traumatic, we took a leap of faith and decided to leave it out overnight. At 10 pm, she took only 1 1/2 oz.  At 2 am, she woke up on her own (for the first time ever!) and took 2 1/2 oz. At 6 am and 10 am, she took 3 oz each. All day yesterday, she took her bottle, better and better, each time. By last night, she was eating like a pro, guzzling it down like she'd been doing it her whole life. At first, Bridget and Eileen were in a bit of trouble for not being more careful around Erin. However, by last night we were joyfully thanking them. :) Yippee!!!

"When is Our Tooth Fairy Going to Retire?"

Yes, these were the words I recently heard from Teresa. Aidan lost his first two teeth about a month ago and has been waiting patiently ever since for the Tooth Fairy to arrive.  Thankfully, Aidan Andrew has a little bit of his uncle Andy in him, whom he is named after. He's a cool cat and is rarely demanding. With this personality, and being number five of seven, he sometimes just does a lot of waiting, without complaining. It doesn't help the matter that he lost the first tooth and swallowed the second.  And of course life has been extremely busy for his Tooth Fairies, and for our family in general, with Erin's heart surgery. But Teresa has a point. This Tooth Fairy needs to either get the job done, or pass the job onto somebody else. I think Aidan will be writing a note to this incompetent Tooth Fairy today and his patient waiting will be rewarded!

Here's Aidan with his new teeth already coming in...



And speaking of Erin's heart surgery, she continues to heal very well. Her scar is already almost healed, and she's sleeping less and has more energy in general. She's just a happier kid. One thing she has started doing more and more is laughing. It has taken us by surprise; she'll just have a good belly laugh, out of the blue, for no apparent reason. I think she's just letting us know that she feels so much better! We are also making slow but steady progress in the eating department. She no longer cries at the sight of her bottle, but this retraining could take some time. The cardiologist explained to us that before Erin's heart repair, Erin's feeding sessions were the equivalent of walking a brisk five mile hike. As you can imagine, asking her to do that several times a day has built up a very negative association with eating. It was just too much work. Having the ng tube helped a lot, but now we have to work on making eating a positive experience again. So, we sing to her and make her very comfortable while she's eating, with lots of praise.  It is working. Although she's still only taking up to 1 1/2 oz per feeding, more importantly, she's enjoying it for the most part now. We stop at the first sign of distress. I'm hoping that in another couple of weeks, and once she's off her heart meds, we'll see even more improvements. We'd still appreciate any prayers for this intention!

Here's Grandma McKillen, holding Erin before she went home. Both grandmothers were an incredible help while we were in the hospital. Thank you both!!

More Homecoming Photos

Erin's Home!

Moira, Eileen and Mike arrived to pick us up at the hospital on Monday afternoon. What a happy day!

Eileen and Moira waiting for Erin to wake up...






When we arrived home we were greeted by this sweet welcome banner (ahem....WHO is their spelling teacher, anyway?!)

A picture is worth a thousand words. Aidan, Teresa and Molly Grace are thrilled that Erin is home...



Bridget finally gets her turn to hold Erin...



Hail, hail, the gang's all here... Thank you for all your prayers and kindness!  (Molly Grace is not wearing lipstick....her lip was burned on a hot pan).