Aly Jean's Special Heart

Great update :)

2012-01-04T13:43:00.000-08:00

YESTERDAY WAS A FANTASTIC DAY.

Michigan pulled through in overtime to win the Sugar Bowl. Some may call it luck, some may call it due to a bad call, but I just call it a win. ;)

Oh, you're not here to read about Michigan Football? Oh, ok.

So then I guess I'll tell you about this cardiology visit that I ~~dreamed about for the last two years~~ went to with one adorable baby, excuse me, big girl yesterday.

We were sure we were in for it. We walked in the lobby and absolutely nothing was of interest to her. The fish that she normally likes to say hi to, the giant books that normally make her laugh... all of it was responded to with an arms crossed, "NO!". Jeremy and I looked at each other and shared the "greeeaatt" glance that we have shared so many times when we see the terrible twos rearing it's ugly head.

But, then something crazy happened. The nurse called her name and off she went walking, NO RUNNING, into the back. We had gotten very lucky at our last appointment and had very minimal tears and fits and were crossing our fingers for more of the same, but with her display in the waiting room, we were not counting on it.

This time, getting her EKG, sats, height, weight.... went off without a hitch. See?

This is Aly getting an EKG. You've never seen a picture of this before, huh? Because normally we are desperately dancing and singing around the room trying to get her to hold still and not pull the probles off for the 10 seconds it takes to get it done. Not even kidding you, Aly actually was GIGGLING yesterday while getting it done. !?!?!?!?!? Crazy.

As for the other info... Sats were 98!!!! When they first hooked her up they were at 98 and then she started moving around and the dropped to about 95. But seriously. 98. Crazy.

Weight- almost 26 pounds!!! That is a weight gain of well over 3 pounds in 4 months!!! Totally unheard of for this girl. Crazy.

Then came the best part. I have an app on my phone for Aly to practice shapes on and she was playing it on the table waiting for Dr. Z to walk in. He walked in and she said hi and continued to play her game.

Now, I'm going to take a moment to talk about Aly's cardiologist. We <3 him. Seriously. I just did a quick count looking back at my calendar and we have had roughly 40 appointments at his office. So I would say we know him well enough to "read" him. That being said, the man has a poker face and it comes in the form of a smile. ALWAYS. We've seen the sympathetic smile as he told us during interstage that we could not leave his office unless Aly's sats went up from the 67 he was getting and that she would be admitted immediately to the good luck smile that we have seen twice as we saw him the last time before we went to Ann Arbor for Aly's Hemi-Fontan and Fontan. We've seen the nervous smile as he threatened NG tube going back in (many many times) interstage when Aly was not or was barely making weight. This guy is cool as a cucumber- always.

But the smile we saw yesterday, I have never seen before.

Seriously friends, he was BEAMING. He came in the room with the biggest smile on his face, laughing that he hardly knew Aly was here because he didn't hear her screaming. (yes, that's the reputation we have ;) ). As we talked about life right now and he looked over her "stats" his smile just got bigger and bigger. Then he went up to Aly and started playing her shapes game with her on my phone. I seriously almost cried. He leaned over and was touching the shapes on the screen and having a conversation with her about them and she was smiling and laughing. He was bent over close to her and she looked over at him and looked him in the eyes and just smiled. They continued to play and laugh for a few minutes while Jeremy and I just stared with our jaws on the ground. Then he pulled out the stethescope and she put her hand on his as he moved around. He thanked her for helping everytime he moved it and she would laugh everytime.

THIS is the appointment I have been dreaming of. The one where literally everything is perfect. He was SO HAPPY with how shes doing. He stopped one of her meds (Aldactone for all your detail junkies ;)) and cut her lasix to once a day with a plan of stopping the lasix all together and cutting down her blood pressure med to once daily in an effort to wean it completely at our next appointment. Now if you've been keeping track, you would know this would leave Aly with just one tiny baby aspirin a day as her medication schedule. AND THAT'S IT.

Jeremy and I were talking on the way home and we were just beside ourselves. We were rehashing the entire visit as if we both weren't there just because we wanted to hear it all again. And, I know I've said this before but I will say it again.

I had no idea life could be this normal for us.

We have been so lucky that we have never come across anyone on Aly's medical team (which is A LOT of people- think about all the nurses, doctors, therapists... that have played a part in Aly's care) who has given us any reason to not have hope for Aly and her future. Yes there were moments where the optimism was guarded, but it was always present.

From the day that Aly was diagnosed with HLHS we have assumed that life was going to change forever- and it definitely has but as optimistic as we have always been we NEVER assumed life would be this easy or this good for Aly. She has HALF of a HEART. She is developmentally on track and has the vocabulary of a kindergartner (ok, not that advanced but she is DEFINITELY advanced with her language), is growing like any other two year old girl and has a very good chance of the only difference in her daily routine then a heart healthy 2 year old being she will continue to eat her "candy" (that's what she calls her aspirin- THANK GOD FOR FLAVORED CHEWABLE ASPIRIN) with her vitamin every morning. I mean really--- really think about it. It's truly amazing.

WE. ARE. SO BLESSED.

Happy New Year and a 2011 look back...

2012-01-01T16:12:00.000-08:00

I've seen a few other blogs do a look back over the last year on New Years and I really like the idea. So here ya go! :)

We started off the year on a good note. January 9, 2011- Aly Jean's first steps :) Jeremy and I could not believe when we watched this video again right now how big our girl has gotten in just one year. We rounded out the month on not as happy a moment- we got "the call" and scheduled Aly's Fontan.
Here's our sweet girl in January- such a baby still!!

In February, our girl officially became "famous", we helped spread CHD Awareness and, oh yeah, this mama started freaking out about Aly's upcoming surgery.

Here's little Miss in February - cool as a cucumber ;)

March was a big month around here. The biggest month of this year, that's for sure. We sucked it up and made the trek to U of M for Aly's Fontan. We were happy to hear that she was "a perfect candidate for the Fontan" and prepared ourselves to hand our little girl over for surgery... just in time to have an EXTREMELY last minute cancellation. Talk about a roller coaster. A week and a half later, we made the trip again and this time, surgery was a go and our girl did fantastic.
Here's Miss Aly with her backpack on, ready to head out and kick some Fontan booty- which she did. :)

April was a month of recovery. We spent the first few days of the month still in the hospital and then came home to spend the next three weeks just relaxing and recovering. We celebrated not only our succcessful surgery but those of our heart friends too.

Aly dancing to Crocodile Rock at the zoo. Our celebratory trip at the end of the month. :)

May was a busy busy month. First, I reflected on the 2nd anniversary of the day that changed everything. The rest of our month was pretty much consumed with the first ever Central Michigan Congenital Heart Walk. We worked really hard and all of our efforts paid off- we raised vital dollars for CHD research and helped spread awareness while we were at it.

Here's our happy girl totally recovered from her surgery and feeling fantastic. :)

June. Miss Aly Jean turned two. What could be better than that?!?

July was a pretty quiet month for us as we spent all of our spare time at the pool or playing outside. And it was perfect. :) We had a consult at U of M to get Aly ear tubes since poor thing had about 12 ear infections since her first birthday, we found at that Aly was movin' on up in a BIG way (on the charts :) ) and celebrated another fantastic anniversary in Aly's life.
Here's Aly passed out from another day of her favorite thing- swimming. :)

August was a BUSY month, in a good fun sorta way mostly. :) Aly did get her ear tubes in and we couldn't be happier- she has yet to have an ear infection since. THANK GOODNESS!!

Goofy girl. :)

September was a bit of a blogging hiatus. I started Grad school double full-time (with a little bit of luck I should be able to get 'er done in a little under a year!) and we were still really busy. Jeremy and I took a nice trip to Cancun with some good friends, we went to the Metro Detroit Congenital Heart Walk and, oh yeah, celebrated that Miss Aly was officially six months post-Fontan!

Here's Aly shaking her groove thang at the heart walk. :)

October was a little more of the same as September. Except I had one of those journal-through-my-feelings moments that I got such an amazing supportive response to by so many of you that I was brought to tears. It's so nice to know you are not alone sometimes. Aly had another cardiology appointment that was NO FUN, but had a great outcome.

We had a great Halloween with an adorable little gnome who LOVED trick or treating. She actually stayed out and trick or treated the entire three hours and threw a fit when we tried to to go home. :)

In November, Aly, my sister and I went down to tour the brand spankin new C.S. Mott Childrens Hospital at the University of Michigan. It was absolutely GORGEOUS and I couldn't help but be a little annoyed that it couldn't have opened three years ago, instead of 7 months after Aly's Fontan. ;) (PRIVATE ROOMS PEOPLE!!!!)

We had a great Thanksgiving in Michigan. We normally head South to visit Jeremy's family but this year we just stayed put and had a dinner at Jeremy's moms. Aly was very helpful when it came to making (a.k.a. eating) the cookies. ;)

Last, but certainly not least, December. We had a WONDERFUL, AMAZING and BLESSED holiday season. We made a great effort to pay forward the kindness and selfless acts that we have been so blessed to have received over the last three years. It was so fun and we really enjoyed putting smiles on other peoples faces. :)

We had a wonderful Christmas full of family and friends. This year we hosted Christmas and it was really nice. We got to just stay home and have everyone come to us. :) And I made a ham for the first time and, unless they are all trying not to hurt my feelings, I didn't do a bad job. ;)

Can you believe how much our girl has changed?!?! Seriously, scroll up to January and then quickly scroll down to December. UNBELIEVABLE!

We hope each and every one of you had a great year too and hope the new year brings good things to everyone of you!

Here's to a big year- full of lots of fun and laughter and NO SURGERIES to anticipate! WOO freakin' HOO!!

Stronger

2011-12-29T13:53:00.000-08:00

So I had this really upbeat, happy-go-lucky Merry Christmas post all set to go up today and then something happened. Something big happened to me today- it may not sound like much but it's a big step for me.

Today, for the very first time ever, I was able to answer someone who didn't know when they asked the "what's wrong with your daughter" question...

WITHOUT CRYING

I know that may sound crazy but every time until today I find my voice cracking as I say the words until I get to the point that I have to stop speaking and take a few deep breaths to clear the tears from my eyes. I try to always keep myself preoccupied when I am explaining it to someone. It's not that I don't want to talk about it but it's that I cannot look people in the face and say it. STILL. I don't know if it's harder for me to re-live as I explain how she was diagnosed and all she's been through or if it's that I can't handle the look on their face- first shock, followed by sympathy for all we've been through and then amazement by how well she is doing. Now don't get me wrong, I have NEVER had anyone react negatively or in a way that hurt my feelings- except for once.

I will never forget this and neither will my friends that were sitting right there when it happened. We still talk about it to this day. My AMAZING friends and family put together the biggest garage sale I have ever seen about two weeks before Aly was born. One of our friends made a big poster with our picture on it and explained that the fundraiser was to help us as we relocate for the birth of our daughter and a little about her condition. A woman walked up to us at the table and asked how the baby was doing (she assumed she was already born). We laughed a little and said she's doing good as I pointed at my belly where she was still safe and sound. This woman seriously looked me right in the face and said, "My friends baby had that and it was awful and he died. But good luck to you." and walked away. We all seriously sat shell shocked that she would say that me and I think all thinking "is she right?" We had no idea.

Ironically, I didn't cry then. But when people ask me with genuine concern and interest... it gets me every time.

So why not today? Why not anymore? Oddly enough, as I was sitting at my desk working, it hit me that I didn't cry. AND THAT MADE ME CRY. It was such a free feeling. I feel like the fear is losing it's grip on me. It's still there and part of it always will be holding tight to a corner of my heart that it pulls at when I have "those moments" but I am winning the battle. I can finally say that. I remember when I was pregnant reading a blog of a mom whose daughter was about 1 or so and she wrote that even on the best most normal days she always thought of her daughters heart a dozen times a day at least and I remember feeling so deflated reading that. And then I lived that. And then, a few weeks ago she updated that her daughter was doing well (she's 3 now) and that days go by that she doesn't even think about her heart other than at medication times. That brought me full circle as I am following in her footsteps. I'm not yet to the point where I don't think about it every day but it's definitely not every second of every day anymore. I didn't know this kind of normal life was possible for us- but it is, and we're doing it!

I am getting stronger. Every day. I have rode the craziest roller coaster for the last two and half years- I've had the highest of high and lowest of lows and I finally feel.....settled. Content. Happy. NORMAL.

So maybe next time someone asks me about Aly, I can do it again. And maybe not even cry about it later. ;)

I promise there will be a Christmas post of Aly in all her cuteness coming soon! Mommy just needed a journal-her-feelings blog post today. :)

Oh and P.S.- I posted all this about how great our life is and posted it before I even realized that Aly has a cardiology check up next week. Old me would NEVER have "counted my chickens before they hatched" (so to speak) but new STRONGER ME..... is still gonna ask you to say a quick prayer and keep Aly in your thoughts next week for a stellar check up. SIGH.. I'm getting there- I'm a work in progress, right? ;)

Wow! Almost a month?!?

2011-12-12T06:12:00.000-08:00

I think this just might be the longest I have ever gone without blogging since I started this thing almost three years ago!! I can't believe how neglectful I've been of Aly's online (and public) baby book!

So, what's new here? Not a whole heck of a lot. And we couldn't be happier about it. :)

First and foremost, December brings another amazing anniversary for Miss Aly Jean. December 4 was 2 YEARS since Aly's Hemi-Fontan. TWO. WHOLE. YEARS. As the years are passing (I can't believe we're to the point where I can say that already), I am more and more amazed by Aly, all she's been through and how great she has done. I know I've said this 1 million times but I'll say it again. I wish there was some way when Aly's special heart was diagnosed that we could have had even just one picture of what Aly is like today. She has always exceeded our hopes and dreams for her and every day I can't wait to see what she comes up with next. You've come so far baby girl and we couldn't be more proud. Here is a picture of Aly the night before her Hemi Fontan and a picture of Aly now:

WOW.

We had a great Thanksgiving. Here's Aly in her Thanksgiving outfit. She really wasn't into pants that day. She might be on to something- we all wear loose pants to be comfy after the big meal- she just goes for no pants at all. ;) But, of course, she must be stylish with her boots to match her shirt.

Our little girl is totally opening up and finally not afraid of everyone. She used to be terrified of her Grandpa (we have no idea why) and then on Thanksgiving, all of a sudden she ran up to him with a book climbed up in his lap and this happened:

She made him read that book to her for almost an hour. LOL. But he didn't care- he was just so excited she wanted to play with him. :)

We went to the Santa parade a couple weeks ago and despite the fact that is was FREEZIING, Aly had a fantastic time. She LOVED picking up all the candy. We left after an HOUR AND A HALF because it still wasn't over and our little Miss was turning in to a blueberry. She wasn't very happy about leaving but she was thrilled about our big bag of candy she got to take with her.

Let's see, what else is new? We went to Crossroads Village last weekend for Aly's first Crossroads Christmas experience there. We went there every year growing up and we've been impatiently waiting for Aly to be old enough and healthy enough to go. This year was it and she had a FANTASTIC time. Until it was time to see Santa- which she wanted nothing to do with. So we quickly got our candy cane and moved on. Other than that we had a great time wandering through the village and Aly even rode the carousel with Grandpa!

We got Christmas pictures done this weekend and Aly did great! Normally it's quite a fight to get pictures taken but not this time. She marched right in and had a blast. Evidence below.

We are all done Christmas shopping! This year we cut down on Christmas presents because we are officially T minus 35 days until our big trip to Disney!! We couldn't be more excited for a week in the sun and to finally let Aly give her "big hugs" to "Punzel" and Mickey. We may have told her about the trip too soon because she talks about it non stop. Whenever we are getting ready to go anyway she automatically assumes its to Disney World. LOL.

Hope you all are having a wonderful holiday season!

"Racking" and updates. :)

2011-11-18T06:00:00.000-08:00

A couple months back I was vacationing with some great girlfriends and were having a discussion about giving. These women are all very giving, thoughtful people, but at the moment we were discussing the one who has a lot on her plate and somehow seems to find the time to give. A LOT. She was, of course, saying we were making a big deal out of nothing and she wasn't anything special (couldn't be farther from the truth :) ) and she said something that really stuck with me. She said (and I'm paraphrasing but this is definitely pretty darn close to the original statement),

"I just don't feel right if I'm not doing something for other people. I feel selfish, I feel like everything is me, me, me and it just feels... BLECK."

Huh. When she said it I heard her but I didn't really think about it until later. Once I really started to think about it, it actually made me uncomfortable. I thought about myself. I mean really thought about me and I wasn't overly impressed with what I came up with.

Over the last two years (almost THREE already...wow!) we have had to take a step back and focus on us. Focus on our family and what we needed to do. I know that we missed some major occasions in our friends and families lives, we forgot to ask about the simple things and I'm sure have been guilty of not really listening when we did give someone the chance to talk about something that was going on with them. I genuinely feel bad about that but we were in a survival mode of sorts and did what we had to do.

Now, I would like to say that pre-Aly Jean's special heart I was this giving, thoughtful person. I had my moments and don't consider myself an overly selfish person but I wasn't what I would like to be.

I want to become a person who just does nice thoughtful things without even realizing you're doing it even if it means stepping out of my comfort zone. I have been making a conscious effort to do little things for people, sometimes strangers sometimes not and have learned that it does feel good and feels like the right thing to do.

So I have been so intrigued by RACKing. We have decided as a family to create a R.A.C.K. calendar- counting down the 25 days to Christmas starting December 1st. Every single day we will do a Random Act of Christmas Kindness. I am SO excited about this. I hope that this will get our family in the routine of doing this year round. I want to raise Aly to be a giver and know how good it feels to give. At dinner last night we talked about some ideas and have a pretty good list going. Now if there are any of you that haven't heard of this before (in doing my research, I realized this has been going on for a long time- selfish me had just never heard of it. ;) ) here a few links I borrowed ideas from- here, here and here.

Are you doing this? Or, have you done it in the past? Do you have any creative ideas? After the season is over I will post our ideas so it will be out there for others who might be in my shoes (TOTAL NEWBIES) next year and are looking for suggestions.

As much as I DESPISE snow (have I mentioned that before? I'm SURE I have.) I am SO excited about the holiday season this year. Aly and I pulled out the Christmas classics last week and watched Frosty the Snowman and Rudolph the Red Nosed Reindeer. I loved watching these with her. Even though, at this point, she has absolutely NO interest in Santa. We were talking about the idea of Santa bringing presents to our house like in the movie and she adamantly told me, "No. Mama bring presents. No Santa." LOL. So, we'll see how breakfast with Santa works out in a couple weeks. This weekend we are off to the Santa Parade which she is REALLY excited about because we told her there would be candy involved. She already dug up her Halloween pumpkin and is talking about "twick or tweat" at the "pawade.".

Last week we made a trip down to U of M for Aly's follow up from her ear tube placement surgery. Shockingly, she was a TERROR whenever the doctor and nurse came in the room. During the hearing test she kept her eyes covered. The only way they could test her hearing was she would turn her head in the direction of the noise and say "no" and look the opposite way. LOL. Interestingly, they said her hearing was better then pre-tubes. This is interesting to me because before the tubes we were told her hearing was great. Other than that the tubes looked good and we got a 6 month pass. They told us they should fall out in the next 8-18 months and if they haven't fallen out by the time we hit the three years (of having the tubes in) mark they will surgicially remove them. I realized that Aly has not been sick once since she got her tubes- until this week, she has a cold, but before that NADA. That is by far the longest we've ever gone without an ear infection.
After our appointment we were walking out of the old hospital for what will probably be the very last time (the new hospital opens in early December) and saw the cutest little shirt that Aly HAD to have. We completely 180'd and marched to the Community Relations office and Nonnie bought Miss Aly one. The following is my attempt to get a cute picture of her in it. After a while I gave up since they were all blurry and she wouldn't hold still. But they are still cute none the less, right? :)

Happy Holiday Season to our amazing friends and family!!

What's new with us?

2011-11-06T16:14:00.000-08:00

Hello everyone! Hope you are all having a wonderful fall. I'm a little thrown off by the fact that as I type it is 6:20pm and pitch black but I guess it comes with the territory, right? In order to get awesome Michigan summers we have to endure that "other" season consisting of nothing but cold, dark and wet. :) Here's a little update on what we've been up to!

Well, Aly's 3rd Halloween was a smashing success! :) We were a little concerned that she wouldn't be too into the idea of wearing a costume, especially a hat, but it only took one person with one piece of candy to ask her to put it on and she caught right on. She came to my work and trick or treated on Friday afternoon, then we went to the Pumpkin Patch again and they had trick or treating on Sunday and then the big finale- actual Halloween on Monday. Our plan was to go to my moms because they always get a TON of kids in their neighborhood. We figured we would take Aly to a couple neighbors and she would be done and we would hand out candy the rest of the night. Um, no. This girl INSISTED on trick or treating the entire two hours. At 8 I had to DRAG her kicking and screaming home. She was devastated that she couldn't keep going. Of course she was pretty close to a little blueberry gnome because it was a little chilly out but all efforts to slow down and warm up or wear a coat were not even taken into consideration by our little princess. Here's a little collage of all our Halloween happenings.

Today my sister, Aly and I took a trip down to Ann Arbor for the open house of the brand spankin new, $754 million dollar, 1.1 million gross square feet, C.S. Mott Childrens Hospital. All I can say is... WOW. We were completely blown away about this place. The open house was such an amazing opportunity because there was not much off limits. Everything was open to the public to see. We toured OR's, PCTU and PICU, Ronald McDonald house, Pediatric Emergency Room and NICUs. It was beyond unbelievable. Here are just a few pictures from today...

Aly playing with the blocks at the shuttle station.

This is the Ronald McDonald house that is actually IN the hospital. Not only is it in the hospital but it is on the same floor of the Pediatric Cardiothoracic Unit (the heart kiddos ICU) and the regular PICU. AND, not only are the on the same floor but it is seriously about 20 steps from this room to the first patient rooms. What a blessing to families who have had to sleep in the waiting rooms at the old hospital or walked to the Ronald McDonald house. We thought the Med Inn was amazing (and it totally is) but this is even closer!

This is HALF of the new PRIVATE PCTU rooms. That's right folks, PRIVATE!! Gone are the days of being stuck in the corner room of the PCTU with four other children. AND, the parents can actually sleep in the room! (Which is new to U of M)

This is the other half of the PCTU. Seriously, these rooms are huge and bright and sunny. LOVE.

This is Aly and her Auntie looking out the window of the ICU room. I'm so happy about the big huge windows- sunshine can make a day in the ICU a little easier.

This is a picture from the NICU floor. We were walking by and I happened to glance out and it stopped me in my tracks. This is a picture of the current C.S. Mott Childrens Hospital. Next slide please.

I zoomed in a little. See the window where that arrow is? You can see the darkness that is the hallway to the PCTU. This is where you wait. You wait for updates on your child who is having surgery, you wait while other cases are brought in because you can't be in the room while they do so, you wait for others to come in and out since there is only 2 people per patient allowed in the room at a time.... you wait. We have spent hours and hours waiting here. Hours and hours staring out this window, watching this amazing hospital being built. I specifically remember while Aly was having her Norwood standing there with Jeremy trying to count how many floors there were when it was just an incomplete frame. I could instantly put myself back in that hallway staring up at where I was now standing. Such a neat thing to have watched this amazing hospital being built over the last two years. Part of me is a little sad that the old hospital will not be the hospital anymore. (I believe it's going to be offices now? Not sure on that though.) I will never be able to walk down the hall to the room where Aly was born or to the ICU room where she fought so hard because it just won't be there anymore. BUT... onward and upwards to better and better, right? :)

P.S. When I zoomed in on this picture I had to smile. You can see someone being transported. When you are being transported in that hallway (in that direction) it only means one thing. FLOOR ORDERS. :) So some super kiddo was making that awesome trip from the ICU to the floor. Always good news. :)

And last, but definitely not least, some HILARIOUS laughing video of Aly. :) ENJOY.

Waiting for the bottom to fall out...

2011-10-25T08:43:00.000-07:00

This post is a little different than anything I have done for awhile. This is more of a journaling-through-my-thoughts-trying-to-figure-things-out type of post. And, I'm going to be honest, I'm a little nervous about throwing it out there. So please be gentle- and don't call me crazy. :) One of the biggest things I have learned since I started this blog is how therapeutic writing can be for me. Sometimes I struggle on how to say things, or who to say them to, when I'm working through something. I rarely struggle to put my thoughts into words. So here goes my latest....
For a long time now I have felt like we have been running against a stop watch. When Aly got her diagnosis, the stop watch started- waiting on her to be born and getting her through her first surgery. When we were discharged from her Norwood, it started again- counting until her Hemi-Fontan. After her Hemi, it started until her Fontan. Now that we are post Fontan, it hasn't started again. But I find myself constantly ready, finger on the start button, just waiting for that clock to start again. From the day I have found out about Aly's heart I have been scared- scared of the next surgery, scared of the next step, scared something was going to happen and we weren't going to make it or be eligible for the next step.... just.plain.scared. Now I find myself not 100% focused on being scared about Aly- we are very very blessed and our little girl is doing amazing. Yes, I am still scared for her future. She is very much so on the cutting edge of medical technology and is part of the second generation of survivors living with her condition. Not a whole lot of reassurance when it comes to her future. Do NOT get me wrong. I have 100% faith in the pediatric cardiac medical community. I know these people are dedicated and GOOD at what they do. They have given children, many who are now adults, the opportunity to LIVE with HLHS, whereas when I was born, had it have been me with HLHS, there is a very very good and most likely chance that I would have been sent home to die in my parents arms. In 30 years, to have come that far.... amazing. I can only imagine where they will be 30 years from now and I am confident that when or if the time comes that Aly needs further intervention they will have a plan. But it's still scary. No mother ever wants to have to wonder what the future might bring when the stakes are so high.
My problem lately is this. Now that I am learning to let go a little and not worry about Aly's heart 100% of my time, I've begun to look around... and found everything else under the sun to worry about. I constantly worry about my friends, my family,even myself, and find myself imagining worst case scenarios for everything. I read about someone getting cancer- I begin to worry about my family- what if that happens to me? Or to someone in my family? If someone I love is traveling- I worry- are they going to get in an accident? What if something awful happened? I am constantly, constantly waiting for the bottom to give out. I find myself planning out the steps that I would follow if any of these awful things actually happened.
The problem I'm having is not a matter of figuring out WHY this is happening. I know why. May 9, 2009. The day the bottom fell out. The day my world went from a blissfully unaware place to live, to a scary place chuck full of unknowns. A place where awful awful things happen to good people and innocent children. Unknowns have never been my forte. I MUCH prefer to be the person behind the surprise, than the one who is receiving it. I am a planner and I love nothing more than being able to anticipate things. That day changed everything. I have seen what can happen and I know what it feels like to have the ground you think you are standing solidly on ripped out from underneath you and what it feels like to freefall into a nightmare- the scariest part about it is that all anyone can really do is watch you fall. No one can grab you and say, "I'll take this all away for you. We'll get this all cleared up and by tomorrow everything will be back to normal." - and I'm just waiting for it to happen again. I know what it feels like to be truly shocked and shaken by something not even on your radar. I feel like I am always always preparing myself for worst case scenario so as not to ever again be in a situation I had never considered. I don't know what this all is and even more frustrating, I don't know how to change it. I don't know if this is just me now... the things I've experienced and seen and lived through can't be erased. Am I now someone who is, for lack of a better word, jaded? Will I always be trying to push away these awful thoughts that pop into my head? I know that a return to complete unawareness is not possible, because I AM aware. And I know that bad things happening in my life aren't over. Bad things happen all the time- there's nothing that can stop that- it is just life, but I would really like to stop worrying about them all the time.
So where am I going with all this? Your guess is as good as mine. (or maybe, better than mine? That would be great! :) ). I'm frustrated at myself and I want to figure out how to get back to as normal as I can possibly get.
I wrote this post about a week ago and still have yet to find the best way to conclude it. I guess that is very reflective of where I am on working through this.... I guess I'll just leave it at this... for now. :) Thanks for reading and for not making me feel like a crazy person. :)

Just because it's funny :)

2011-10-10T08:11:00.000-07:00

There is no real reason for this post. Besides the fact that my daughter, Miss Aly Jean, is turning into a little comedian lately and I do not want to forget a single thing about how funny she is. So for my documentation purpose and your amusement.... more Aly-isms. :)

I left my family behind for an amazing getaway with some amazing heart moms last weekend. (Read more about THAT here and here) Aly spent the weekend with her daddy and now, this picture is how we MUST watch Saturday morning cartoons. Yes folks, the tent is on the couch. Jeremy wasn't home Saturday morning and I could not for the life of me figure out what she was trying to do. She worked at this for about 20 minutes. Grunting and groaning and getting mad at me for not understanding how I could help her reach her goal because I had NO idea what that goal was. As a last ditch effort I put the tent on the couch and looked at her for approval and she was thrilled. She threw her favorite pillow, her blankie and her Mickey Mouse doll in there and climbed up in. She laid in there and watched almost the entire movie, Rio- for over an hour. She kept getting mad at for taking her picture. Apparently it is supposed to be her paprazzi shield. ;)
Do you notice anything else a little off about this picture? No? Well please scroll to the next picture.

How about now? Aly was banging around in her room Saturday morning and I just assumed she was loudly "cooking" in her kitchen like she normally is. Then she walked around the corner with this in her mouth. She lovingly refers to it as her "monster boppy". Instead of cooking she was digging through her drawers and found this pacifier we bought for one of her costumes last year (see the next picture). Now she will NOT give it up. Everything is about "monster boppy". And yes, she still has a pacifier. SIGH. I am trying to decide between battles right now- take away the pacifier or potty training. I don't want to do both at once and she, at this point, is not interested in either.

There was a story behind Aly being dracula last year. In true Aly form, she decided to take on teething in her own order. She had her two fang teeth and only her two fang teeth for the longest time so we thought it would only be appropriate to dress her as dracula for Halloween. But then I found the pacifier and just had to have it because, well, it was hilarious.

After Aly got up from her nap the other day, I put her down in the living room and started making her lunch. When I came out with her lunch this is how I found her. Livin' the high life, kicked back relaxing while someone makes your lunch. I wish I was two years old. ;)

Aly had another "first" this weekend. Her very first time jumping in the leaves. :) As you can see she loved it. :)

YouTube Video

Last but not least, Aly and her camera. I really think she is going to be a photographer when she grows up. She is constantly taking pictures. :)

A few other funnies that I don't have pictures to go with.... - Aly is OBSESSED with Rice Krispies. She wants "krispies" for breakfast, lunch and dinner. And of course, I did NOT let her have it for every meal all weekend. (Or maybe I did. My deal with her was she had to eat something else first- with a little more substance and nutritional value than Rice Krispies- but she had at least one bowl of Krispies for every meal. )She asks for "krispies and white milk please" as soon as she opens her eyes in the morning. - Aly told me and her grandma this morning, she has a BOYFRIEND. Jeremy was NOT HAPPY to hear this. She talks about this little boy at daycare ALL THE TIME so I asked if it was her boyfriend and she smiled, shook her head yes and buried her face in grandmas neck like she was embarassed. It was hilarious. And yet scary at the same time. ;)

Hope everyone has a great week!! Happy Monday!!!

-Posted using BlogPress from my iPhone

Let's look at the big picture here folks

2011-10-06T15:54:00.000-07:00

This afternoon Aly had her 6 month post Fontan check up with her cardiologist. If you have been around the blog for awhile, you are probably aware that little Miss Bear is not always the most.... shall we say... agreeable with her medical providers. It's the truth people- doctors dread her, nurses fear her... even the most friendly medical staff who are SURE they will be "the one" that she just loves have walked.. no ran.... the other way. (Ok, it's not THAT bad- but it's definitely not good). I decided to see if a little pre game preparation might make a difference this time. Two days ago during bath time I had the following conversation with Aly:
Me: "So Aly, we are going to see Dr. Z soon. Do you think you can be nice to him?"
Aly: (ignoring me while continuing to run Muno up and down the length of the bathtub)
Me: "Dr. Z is really nice to us, maybe we can be nice to him too?"
Aly: "Ok mama. Aly no hit Dr. Z like Sam* hit Aly."
Me: "WHAT?!? Who said anything about HITTING Dr. Z.?!"
(I didn't question the Sam* thing- I've been aware of that for awhile. There is a kid at daycare (whose name is not really Sam, but is not my kid to tell stories about, so you know the drill- names have been changed to protect the innocent... or maybe not so innocent. ;) ) who Aly LOVES to tattle tale on- or this kid really spends all day hitting her, which I doubt since her Grandma is her daycare provider and I'm sure would not allow this to happen to her granddaughter. Aly CONSTANTLY says, "Sam hit Aly. " And she'll hold out her foot or her arm or her finger... whatever she feels like. There is never a mark, I think she just likes to tattle tale. ;) )
So over the last two days I've continued to have conversations about going to Dr. Z and what would happen while we are they and how important being nice is. I had completely ridiculous pictures in my head of Aly running in to Dr. Z's open arms and laughing and charming the nurses.... YEAH. NOT SO MUCH.
We got there and Aly was acting like more of a big girl than normal. She marched right in there, stopped to make sure nothing had changed in the fish tank since our last visit and tried to open the door back to the exam rooms. The door opened, and Aly's face lit up and she started on her way, when the nurse called someone else. I told Aly it wasn't her turn yet and her face just fell. I started thinking.. maybe.... just maybe....
So finally it was our turn and the nurse opened the door, looked at her chart, winced and said, "Aly?" Aly took off running following her into the first exam room. Where we got a FULL SET of "required" vitals for the first time since.... easily pre Fontan (at this office- the hospital obviously got them during surgery and things). That's right! An EKG, weight, height, sats (94!!), blood pressure (Leg AND arm)! All without too much of a fight. This is normally the worst part of the visit so I thought we were in the clear.
We moved into the other exam room to wait for Dr. Z. Aly settled on the exam table with her snack, some water and "BuzzWoody" (a.k.a. Toy Story 3) on mommys phone. Dr. Z walked in and said hi and Aly LOOKED UP AND SMILED and went back to her movie. He and I talked for a few minutes and then he was ready to go in for a listen and the inevitable belly squeeze (checking her liver). Aly watched him put the stethoscope on her chest and slowly looked up to his face... and FLIPPED. She started screaming and HITTING HIM IN THE ARM over and over and over... While I'm trying to not melt into an embarrased mommy puddle but keeping my daughter from SMACKING the man who has done so much for her, he got to hear (and feel) what he needed. As soon as he sat up straight, it was like a switch went off. The tears stopped instantly. She grabbed her snack, her water, my iPhone and resumed her movie. Dr. Z and I both could not stop laughing at how quickly she "recovered". I apologized profusely and he laughed and just waved my apologies away. He even said some really awesome stuff... like...
"Aly looks exactly as I would want her to 6 months Post-Fontan"

"You're doing really really great Miss Aly. Really great."

"Let's cut the Aldactone down to once a day, and in three months cut it out completely, as well as cutting out the lasix"

"I'll see you in three months and after that we will go to appointments every six months."

He had absolutely nothing bad to say. I could not be happier. So it's looking like, in 3 months, we will be down to one oral med, two times a day, a baby aspirin daily and bi-annual cardiology check ins.

UNBELIEVABLE!!!

So, I prefer to look at the big picture of today. Aly's appointment went awesome! Aly knows that hitting is not right- and I might be a bad mom but I give a little leeway in doctors offices, especially cardiology because there is so much going on. I had to get an EKG for work a few months ago and it was my first one and I remember being surprised how uncomfortable I was and realized what Aly was going through. So, we'll keep working on no hitting (no thanks to Sam ;) ) and hopefully Aly will keep kickin' some special heart booty. :)

On a special side note, she did end the appointment on a cute note. I was standing at the desk making her next appointment and somehow she snuck down the hallway... directly in to Dr. Z's office. I looked around for her in a panic and then heard them talking in his office. It was so cute. :)

Does your heart kid have one of these? AND.. 6 months!!!!

2011-09-26T08:53:00.000-07:00

I don't even remember where or when I found out about Heart Heros Capes, but I'm so glad I did. This organization was started by three heart moms. Here's their story behind how Heart Heros came to be:

"These children laugh, play and enjoy life just like any child, however, what makes them our heroes is that they have experienced life-saving heart operations - unlike most children. One would never know these children have endured lengthy hospital stays and miraculous medical interventions.

Undergoing these complex medical procedures is a daunting experience even for adults. For children, being alone without their family to comfort them amidst a crowd of medical professionals is absolutely frightening. Heart Hero Capes was created with the hope that all children visiting the hospital or their cardiologist will feel invincible wearing their cape - have super powers - and that their parents will be comforted knowing that the arms that always protect them are momentarily being substituted with the superpowers of the cape.

After seeing their children face the challenges of heart operations and cardiology appointments, the moms of these heart heroes decided to create the opportunity for all children with Congenital Heart Disease (CHD) to have a Heart Hero Cape."

Awesome, huh? Aly absolutely ADORES her Heart Hero cape. In fact, she feels so special when she wears it that she refuses to hold still so I can get a good picture of it. This is the best I could get- it's a little blurry because, of course, it's an Aly in motion shot.

And this picture doesn't even show the adorableness of the sparkles all over the heart. It's really, seriously so stinkin' cute.

She calls it her "superhero" and brings it to us to put it on her probably at least once every other day. She adores it... see? **WARNING: These are not very good videos as they are from my iPhone. Sorry- hope shaky screens don't make you nauseous. :) )**

I absolutely love how special Aly feels wearing this. And she absolutely should, because she is definitely my super hero. :)

She is my Super Hero who, in two days, is offically SIX MONTHS POST FONTAN!!

We are so so so SO blessed to have the life we do.

We are living a life every single day that we didn't even know could be this great.

When we found out about Aly's special heart, I knew it would change everything, and it did. But I was wrong about HOW it would change. I assumed life would always be a little more... medical than it is. The first five months of Aly's life, our lives rotated around her heart. Every single step we took, her heart was first and foremost on our mind as she was considered medically fragile. We couldn't take her out in public, we couldn't let her cry too hard for too long, we couldn't let her sleep more than six hours without eating, we couldn't let one day pass when we didn't document every single ounce of formula that went into her cute little mouth, we couldn't take her in the car for longer than two hours without doctors approval...the list goes on and on... everything was about her and her heart. We had so many rules that weren't normal.

Now that we are here, 6 months post Fontan, the rules have changed. Our rules are just like everyone elses rules- special heart or not. We do have a very few extra rules that we have to play by (medications schedules and cardiology visits) but they are few and far between. We never imagined this,how we live, would even be possible for us. But it IS possible and even better, it's our reality.

You are my Super Aly and I couldn't be more proud of you.

To request your own cape or donate to allow for another heart child to receive a free cape, Click here.

So, what's new?

2011-09-21T07:31:00.000-07:00

So... what have we been up to, you ask? What HAVEN'T we been up to? :) We have had a busy busy couple months. To recap a few weeks....

Aly, myself and her Auntie went down to Cincinnati to go to the zoo and meet up with some of our most missed Midland families who have relocated to Kentucky (even with me hanging on her leg, sobbing like a two year old as she got into the car to move out of town... she went anyways.. what KIND of a person? ;) Just kidding Sue- I'll always love you. :) ). Aly and their son Ben are only 4 days apart and they love each other. I mean, they LOVE each other. They are so stinkin cute. We couldn't end up going to the zoo because the forecast for the day was 104 degrees for the high and it was already 89 by 7:30am. That's a little too hot to be outside all day. So we opted for the aquarium instead. We met outside the entrance to the aquarium and cutie patooties Ben and Aly just beelined for each other, meeting in a loving embrace that was too cute for words. I didn't have my camera out, but trust me, it was adorable.

Here they are in the hotel watching their favorite, Toy Story. They kept inching closer and closer and closer to the TV, so someone was just a little ahead of the other... until they got a little too close and pushed it right off the couch.

To which our response was retreating them to their own corners and putting the TV in more of a central location. :)

We had such a great time with them and were sad that this will be the last time we see them before the big Michigan winter hits and road trips are few and far between.

The next weekend, Aly and I met up with some of our heart friends at the Metro Detroit Congenital Heart Walk. It was such a great morning! We got to catch up with friends, old and new and Aly got to have ice cream in the morning and play with bubbles. So she was happy and so was I. :) Aly had a blast playing with the hula hoop too. :)

Two days after the heart walk, Jeremy and I and 4 of our very besties headed off to Cancun for 5 days of fun in the sun. And it was exactly that. We had such an amazing time but we definitely missed our girl. She had a great time too hanging out with her grandparents. She won't stop talking about the hot air balloon show they went to......

This is a good segeway into... that's right folks... it's time for another edition of ALYISMS!!!

**While at the hot air balloon show, Aly kept talking about the "butt paste" balloon. LOL. My mom said there was a yellow balloon with red stripes on it (apparently looking very similar to the butt paste container) and she kept yelling for the butt paste balloon and annoucing that she sees "25 butt paste balloons.". LOL. She's still talking about them.

**My mom brought Aly back to our house on the day we were flying in since we were getting in close to bedtime. She said on the way to our house Aly was screaming, "I'm comin' mama daddy! I'm comin'!"

**Everything with our girl is "Of course!". For instance... "Aly, would you like milk or water with your dinner?" Response: "Milk of course, mama".

**Her favorite songs in the whole world right now are all from the movie Tangled. She plays with her toys singing, "I gotta dream! I gotta dream!" at the top of her lungs.

**Her favorite movie right now is hands down, Rio. Normally in the morning Aly's standard greeting to me is, "Hi mama, sweet dreams, milk please." That's the first thing she says to me everyday. Apparently she got tired of waiting for me to ask if she had sweet dreams every morning because now she just cuts me off before I get a chance. The other day I walked in her room and she looked at me with a total straight face and just said, "Rio."

**Another funny about her Rio obsession... if you have seen the movie before you will know that one of the main characters (birds) is Blue (that is his name). He is, you guessed it, blue in color. Most of the movie is based in Rio de Janeiro (hence the name). This is a concept that Aly does not understand. She thinks the birds name is Rio. There's a couple points in the movie where Blue is running away from the mean bird. During these times Aly stands up and yells "Run Rio Run!" I tell her, "The birds name is blue Aly." To which she says, "Yes mama, bird is blue." SIGH. :)

Last but not least, a short list of prayer requests.

1. Aly has a cardiology appointment in two weeks. As always I'm gettin the heart mama jitters. We would really appreciate your thoughts and prayers that all goes well.

2. I have a heart mama who I cannot seem to keep out of my thoughts lately. Do you all remember Mary Clare? She has the same special heart as Aly and had her Fontan the same week Aly did. When Mary Clare was discharged after her Fontan, her and her family stopped at their favorite restaurant on their way home. Mary Clare had a grand mal seizure at the restaurant and they were rushed back to the hospital. Over the next few weeks they learned that their daughter also has epilepsy as well as a special heart. Mary Clare's mama is so amazing. She always has such a positive attitude. Just as things have gotten under control and back to normal for their family, she found out about a month ago she has breast cancer. She has since started chemotherapy and is dealing with everyday as it comes and holding strong to her amazing attitude. Please keep her in your thoughts and prayers that this chemotherapy works for her. Click here for her blog.

3. Please keep our cutie patootie friend Mason in your thoughts and prayers. He is recovering from his full repair surgery two days ago. Click here for his blog.

Thanks for checking in with us! I promise to try harder to update more often! :)

Ever wondered how it all started?

2011-09-09T13:30:00.000-07:00

Sometime in the late spring, early summer of 2010 I came across a heart mom blog that I hadn't seen before. Her adorable son was born with the same special heart as our Aly and he was not doing well. This adorable little boy was living the saying "One step forward, two steps back". I started following along and praying for Bodie to finally catch a break. The one thing that really drew me to this blog (besides the obvious cuteness of this little boy) was his mothers attitude. I was completely in awe of her. She just had it all so together while living in one of those nightmare situations where everyone would expect/understand if she were to fall apart. While obviously disappointed and scared for her son, she seemed to never miss a beat. The one thing that always struck me, was she was the only person who didn't see it! She had no idea of the strength that she has and how amazing she is. Her positive attitude was never soured.
As a heart parent we hear the comment, "I don't know how you do it." Followed by comments like, "I could never be as strong as you." or "I couldn't do it." As a heart parent whenever anyone says something like this to me, I immediately respond with. "I do it because I have to." It's not a choice for me. It was just something we were handed that we had to do our best to get through and live with. Now that being said, reading Amy's blog I still often had that thought, "I don't know how she does it."
Over time a friendship grew between Amy and I, mostly through our blogs, through occasional emails and eventually connecting on Facebook too. Then one day Amy sent me an email asking me to be involved in something amazing.... Below is the story of how Sisters by Heart came to be (in Amy's words :) ).

"A little over 8 months ago, I met a heart mom due with a baby with the same condition Bodie has. She was asking for advice and several of us been-there-done-that heart moms recommended purchasing some baby legs and side-snap onesies, since that's about all your baby can wear in a hospital setting. She went to Babies R Us and couldn't find either one. I remember reading her blog, feeling the sadness in her writing. All that she wanted was to buy something for her sweet baby and HLHS was robbing her of even that. I realized I knew where to get both side-snap onesies (only at Target, and only on a good day) and Babylegs (amazon or baby steals are your best bet). So I figured I'd pick some up and send them to her.

An inkling of an idea was born. Just a teeny tiny seed in the back of my mind. What if there were other new, heart moms with the same problem? Who couldn't find these items us fellow heart moms earnestly told them they needed? What if somehow us, been-there-done-that moms, could help somehow? So I asked my fellow heart moms if they wanted to help me put together a little package that contained some of these harder to find items.
Well, don't ever ask a group of heart moms to help you with a little project...unless you intend for it to have a life of its own faster than you can "please, can you help?" Within 2 days, Sisters by Heart was born - complete with a logo and a website. That was 8 months ago. To date, we've sent out over 90 care packages, which now include the original Baby Legs and side-snap onesies, along with bios of some of our thriving HLHSers, pacifiers, notepads & pens, antibacterial gel, lotion, adorable infant gowns with happy faces on them and "keep your hands off my kid" (but worded much nicer, of course) signs - all in a huge black bag with our logo on it (perfect for schlepping around the hospital). Our brochures are now in every top pediatriac cardiac ICU in the country. We're getting accolades from surgeons, from cardiologists, and most importantly, from the families we're helping.
In the first few months of SBH's inception, the other moms started talking about filing as a 501(c)(3) charity. My first reaction was "no way, no how. Not gonna happen." I had formed a 501(c)(3) back in my lawyering days and it was a ridiculous amount of work. And I loved my job as the CFO of a nonprofit, but I watched the development department and thought fairly regularly "thank God I don't have to be on the money raising end. Man, that looks hard!" But...we started raising money...and started gaining momentum. And I started praying - and realizing God had brought me to this moment, with my specific background, for a reason. So I started rethinking things.
On February 14 (kinda fitting, dontcha think?), we filed as a nonprofit corporation with the California Secretary of State. And in July, we had our first board meeting and filed for our 501(c)(3) status. And yes, it was every bit as much work as I had imagined (to put it in perspective, our IRS application alone was 14 pages, and that doesn't include the 26 pages of exhibits), but it was totally worth it. Because last weekend, we received the following letter:

To say that I am shocked, excited and proud is an understatement. From a little idea to a full-blown 501(c)(3) public charity in just 8 months is amazing. I am so proud to be a part of this amazing group of women and am so excited to see what's in store for this group in the future.

Won't you please consider making a donation to further our work? Help us continue to give hope. It's so easy. Simply click here and click "donate" on the right hand side - your contribution will be fully tax deductible!"

Thank you so much Amy for having such a great idea and allowing me to be a part of it. To read Amy's son, Bodie, story, please click here.

Updates!

2011-08-27T08:34:00.000-07:00

So yesterday was the big day- Aly's ear tube surgery. All in all, it was just so..... wierd. Everything went really well, but wiiiierrdd. We went down to Ann Arbor the night before since we had to be at the hospital at 7am. Aly napped most of the way down there and so when we checked into the hotel around 8:30 she was getting a second wind. A second wind that lasted late into the evening, until about 11:30. Jeremy and I could barely stay awake to try and get her to go to sleep. Then she spent all night kicking us and throwing herself on Jeremy's face for some reason (it was so funny- she would scare the crap out of him by literally just throwing her mostly sleeping self on his head- he didn't laugh as hard as I did for some reason. ;) )Needless to say when the alarm went off at 6 I was searching desperately for caffeine as quietly as possible because Miss Aly was NPO (not food or liquid). Jeremy and I tiptoed around getting ready as our plan was to let Aly sleep to the very last second to avoid her asking for food or drinks. We almost made it to the car before her first request for "Milk please. PLEASSEEE." I pretended I didn't hear her and tried to distract her by talking about a tree or a truck or something, I don't remember, but it worked. Once we got back to the pre op area Aly repeatedly asked the nurse for "Cheeburger peez. Cheesburger peez." The nurse thought it was hilarious that she asks for cheeseburgers at 7am. That's our girl. :) Pre-op is SO different for minor surgery. When it's open heart surgery time, everyone has there game faces on. Nurses have their best sympathetic faces on, they all talk gently and quietly to you and everything is calm. This is very different. Everyone was laughing and smiling, like it's no big deal. SO wierd. Same pre-op, same nurses, same everything... totally different attitudes. Anesthesia told us the unfortunate news that they would not be giving her any Versed as the general anesthia is so brief we would be stuck at the hospital waiting for the Versed to wear off longer then if we didn't. She asked if Aly would willing go with her. I let a good-luck-with-that type of laugh and Jeremy promptly said NO. And they basically said,"too bad" (in a nicer way than that). We pretended to be excited and playing a fun game and anesthesia whisked her away singing while we were dancing and singing and clapping in the background. Then we grabbed our bags and headed for the door and then it happened. From somewhere down the hallway to the OR I heard my girl give out her worst ear piercing I'm-so-scared-where's-my-mommy scream. I immediately stopped dead in my tracks, grabbed Jeremy's arm and the tears came. THAT was awful. I've never had that experience before and it broke my heart. So we got in the elevator (I'm still crying) and the elevator doors opened (I'm still crying) and we run into our heart friend Jillian and her mom Janel! (I'm still crying). I was so excited to finally meet them in person but I'm sure they think I'm a crazy person because I was STILL CRYING and Jeremy had to explain why because I didn't want to really start sobbing. SIGH. Jillian was on her way up to X-ray to see if her Fontan lingering fluid had finally started to go away. Jeremy and I went to the waiting room checked in, bought a muffin, sat down to eat it and we see the doctor looking for us. I'm not even kidding you, this was less than 15 minutes after we left our girl downstairs. He was all done, we should see her in just a couple minutes. I know we have a very jaded sense of humor, because Jeremy and I couldn't help but laugh. It was just so wierd!! We're used to trying to occupy ourselves for 4 or 5 HOURS not minutes when Aly is in surgery. So what seemed like seconds later, we were walking into recovery to a very pouty mad girl who was NOT happy about the IV in her hand and mommy and daddy not being there. She kept yanking at her IV saying "take off. take off PEEZ." Then the nurse asked her if she wanted ice cream (at 8:45am) which made Aly's day. So about 25 minutes later, we were in the car on our way home. Again, SO WIERD. Both of our recovery nurses were nurses from Pod A- the pediatric cardiac icu (the first one took care of Aly after her Norwood) and were laughing along with us at our confusion of just walking out the door, 2 hours after we arrived. We've had cardiology appointments that have taken longer than that! So all in all, everything went amazing. We got home and all took a nice long 3 hour nap and Aly was back to her old self. Thank you so much for all of your thoughts and prayers!

As for our heart friends...... good news!

Jillian's fluid decreased! She got to go home yesterday!

Evan has not had anymore seizures since they figured the right cocktail of medications. Nuerology is very happy with how active Evan is being and they do not see any signs of long term effects from his stroke.

Brittney is slowly and steadily improving! Her echo yesterday showed the same if not slightly improved heart function which is good news.

Thank you so much for keeping our friends in your thoughts and prayers also! As you can see, they just might be working, so keep 'em coming! :)

Here's some pics of Aly's big day yesterday.

Aly starting to get not so happy in pre op because she wanted some milk and a "cheeburger".

The closest I could get to a smile in pre op. Yes we let her go to the hospital in her princess nighgown, Toy Story crocs and bed head.

Watching the nurses talk about getting her vital signs. I think she might have actually laughed when they asked if she has ever had her blood pressure taken before and try to explain to us what a pulse ox test does. Once they took a better look at her chart, I think they understood our "Are you serious?" looks.

Cuddling with daddy in recovery.

Still feeling a little drowsy from the anesthia on the way home.

And back to her old self a mere three hours later. Yes she is upside down in this picture. :)

- Posted using BlogPress from my iPhone

4 special hearts

2011-08-25T05:24:00.000-07:00

This morning I woke up with 4 special hearts heavy on my mind.

The first and most obvious, our very own, Miss Aly. We are making the trip down to Ann Arbor tonight for Aly's ear tube surgery in the morning. I am so confused by it. I was trying to get our stuff packed last night and I just don't know how to get ready for minor surgery- Emotionally or physically. I was laying in bed last night with that familiar tug of "I-don't-want-to-do-this" that I get whenever it's time for Aly to have surgery. Normally, her surgeries are NOT optional. She needs them to survive. PERIOD. This one, she doesn't necessarily need, we are opting to do it. For a crazy minute I had almost convinced myself to cancel it- because I could and I don't have to do anything I don't want to do. (HA- like I haven't learned THAT is not really true). I don't like the idea of taking Aly to the same pre op area we have gone to before her last two surgeries. I don't like the idea of handing her over to an

Anesthesiologist. I don't like the idea of sitting in a waiting room while she is in surgery. But I don't know how to comprehend that this is NOTHING- not even a blip on the radar of the other surgeries she has had. I don't like the idea of general anesthesia on my two year old(be it for 5 minutes or 5 hours). So, I feel bad even asking for something so NOT serious but we would really appreciate any thoughts and prayers for Aly's surgery in the morning. That things go well, go smoothly and it isn't too traumatic for her to be back in the hospital- even for just a few hours.

As for the other 3 special hearts, they will also all be at U of M tomorrow too.

Remember Brittney? She is a heart transplant recipient with an amazing story that you can read here. She was admitted to U of M two days and is in severe rejection. 3 days ago Brittney asked her dad to take her to the hospital after not feeling well for a couple days. In her dad's words, "If Brittney had not asked for me to take her to the ER last night, the doctor said she probably would not be here today :(" She is intubated, medically paralzed and started dialysis as her kidneys took a big hit from this. PLEASE keep her in your thoughts and prayers for her recovery. For updates on Brittney, click here.

Remember Evan? Sweet Evan is just over a month old and is recovering from his first surgery. Yesterday Evan had multiple seizures and they have learned that he had a stroke sometime most likely in the last week. There was some damage to his brain and right now they are testing to see to what extent the damage has been done. Please keep Evan in your thoughts and prayers for minimal damage and a full recovery from this. For updates on Evan, click here.

Last, but certainly not least, our sweetheart friend Jillian. She had her Fontan back in May and had the darndest time with FLUID. (GRRRR... post Fontan fluid... *%&$) She went to U of M for a check up yesterday and the fluid has increased. Sweet thing had MORE medication added to her current dosages and is given until tomorrow to drop some of this fluid. If the medication doesn't work, she will be admitted. BOO. PLEASE pray for Jillians fluid to GO AWAY and STAY AWAY! For updates on Jillian, click here.

So It looks like we will not be alone at U of M tomorrow. We have many friends who will be there. Please keep them all in your thoughts and prayers. I already can't wait to do a post a month from now showing you how great all of these kiddos are doing.

Did you know... and some Aly-isms...

2011-08-19T07:58:00.000-07:00

In becoming part of the heart community, I have come across many many different groups or organizations that do amazing things. Most of them (if not all) I have learned about from another heart family, so in a continued effort to pay it forward....

Did you know about......

Sisters by Heart- This is a group started by moms of children with HLHS. Their mission is "Supporting newly diagnosed HLHS families, one precious heart at a time." I am proud to say that I am a part of Sisters by Heart and love that I have the opportunity to offer support to families whose shoes I have once been.

Heartfelt Couture- This is an organization who makes hospital gowns for children! We got one before Aly's Fontan and we LOVED it!

Icing Smiles- This wonderful organization helps make our special hearts birthday as special as it should be by finding local bakeries who are willing to donate birthday cakes. We got one for Aly's 2nd birthday and it was A-D-O-R-A-B-L-E.

Heart Mamas- This is an amazing group on Facebook. It's a private group that has over 300 heart mamas (and a few heart dads too) in it. It's a place where we can ask each other questions, offer support and help each other. There is also many many other great public Facebook pages too- such as CHD Community, Hope for Children with HLHS, Hypoplastic Left Heart Syndrome, and most states have their own private group page. For instance, I started one for Michigan called Michigan Heart Families and we have over 80 Michigan Heart Families in it! Search your state and see if there is a page!

Hope for HLHS- This is a Yahoo Group that has a message board that is VERY active and VERY helpful.

Heart Heros Capes- This organization makes Heart Hero capes for our special hearts. Aly ADORES her cape and loves to wear it all around the house.

Childrens Heart Foundation This website has a TON of useful information. There is a .pdf book on this website that is SO helpful and informative, while still explaining things in terms that normal people (i.e. not medical) can understand.

I have gotten emails from quite a few families lately who are new to the CHD world and stumbled upon us and are relieved to see they are not as alone as they might feel. If I informed just one person about one of these groups that they didn't know before reading this... well then, I have reached my goal. :)

Also, for the books, I wanted to share some of Aly's latest antics....

- Aly now refers to herself in the third person about 80% of the time. "Ahwe Jean Lincoln this" and "Ahwe Jean Lincoln that." (Not a typo- that's how she pronouces it- AHWE, not ALY) It's hilarious. The other morning I was getting ready for work and she was watching me brush my teeth. I asked her if she was ready to brush her teeth this morning and she responded, "Of course mom, Aly Jean Lincoln like brush teeth." She's only TWO year s old, people- she talks like an adult. It's hilarious.

- We're also VERY into phones right now (or anything that can be held to her ear- seriously anything- yesterday we were at the grocery store and she was holding a package of hot dogs to her ear saying, "lo? lo?") She will stand right in front of you with something to her ear saying "lo? LO?" until you pick up something and put it to your ear and say, "who is this?" to which she always replies, "AHWE JEAN LINCOLN!" (in her best DUH voice) followed by "bye!". We do this over and over and over and over.

- Also, her little adorable manners are in full force. She is hilarious with her "No thanks". For instance, "C'mon Aly, let's go take a bath"- "No thanks Mom." Or, "C'mon Aly, let's go change your diaper"- "No thanks Mom." Too funny.

Aly loves to wear her mamas glasses.

Reading her absolute favorite book to her monkey. I remember this book from when I was little and I think it's hilarious how much she loves it. Everytime we turn the page she SCREAMS, "OHHH NOOOO!"

We were in for a long car ride up North to spend time with family and I looked back and see her making faces like this. I asked her what in the world she was doing and she laughed and said, "funny faces!!"

Miss nosy pants being nosy... "Whatcha doin' mom?" :)

Where the heck are we?!?

2011-08-11T07:24:00.000-07:00

I live in Michigan. Michigan is a beautiful place with the prettiest beaches and lakes, SO much to do outside.... 4 months a year. IF you're lucky. I live the other 8 months of the year (ok really only 3- January - March is the.worst.time.of.the.year.to.be.in.Michigan. I PROMISE) counting down until it returns. So you can imagine that I jam pack those 4 months with as much fun as possible. I mean JAM PACKED. Just in case you doubt me..... (Most pictures have links if you're curious where these gorgeous places are :) )

Last weekend, we were here....

(In a tube, not a canoe- and this is not my picture, most of these aren't but they are actual pictures of where we are. :) )

This weekend, we will be here....

Next weekend, to celebrate my 29th birthday (or the third anniversary of it..... whatever. Same difference, right? :) ) we will be here.....

The weekend after that, we will be here....

Not NEARLY as fun. This is the University of Michigan hospital. We got a call a couple weeks ago from Aly's ENT's office and they had an opening at the end of August for her tube placement surgery and I snatched it right up. I couldn't be happier that it has been moved to a Friday and two months earlier. Even though this is an outpatient surgery and everyone is assuring me she will be back to herself in literally hours, I am very happy that we have the weekend together so that I can keep a close eye on her.

The NEXT weekend we will be somewhere in this.... (haven't made the final location decision but we'll be somewhere by the water... have you seen that theme? ;) )

We refer to this as our "summer home". :)

The next weekend we will be here.....

Metro Detroit

I'm SO excited about this for many reasons. One of which may be because I don't have to speak at it (for all those that attended the Midland walk, you know what I'm talking about. I'm apparantly a little "too close to the cause" to be publicly speaking since I turn into a blubbering mess of tears). The other reason is I am hopefully going to have the chance to meet some of my friends in PERSON. GASP. Not just on Facebook or through their blogs. And not just them, but their sweet little special hearts. ANNNDDD... I can't say I'm not excited to introduce Aly to them. :) In case you haven't kept up with the dates of "the next weekend and the next weekend" this walk is Sunday, September 11th. Click here or on the logo above to be redirected for more information about the walk.

The next weekend, Jeremy and I will be here.....

on an adults only vacation with some of our very besties. 5 days of fun and relaxation in the Mexican sun? YES PLEASE. :)

The weekend after that I will be here...

Amidst all of this crazy fun, my graduate classes begin in TWO WEEKS. I'm sure I will be spending this weekend catching up (and hopefully getting a little ahead) with school.

And, last, but absolutely NOT LEAST, the next weekend I will be here....

I will be spending the weekend with some of my very closest special Sisters by Heart. Fellow heart moms who came together over a similar interest in supporting newly diagnosed HLHS families and have grown great friendships along the way.

After that, we will be packing away the summer clothes (BOO) and pulling out the winter coats and heated blankets to hunker down and cuddle until spring. The Lincoln family hibernation, if you will. Miss Aly will DEFINITELY miss the summer- much to my relief, this girl LOVES her some water- lakes, rivers, pools... whatever you got, she wants to be in it. See?

"Are we going swimming, or what?"

Swimming in Gwanpa and Nonni's pool.

See that little one just sitting in the water next to the little fountains? Yep, that's our Aly. She LOVES to watch the older kids go down the slide. It's small enough that she could go on it but she walks towards it and chickens out every time. She likes her space too. This particular day I tried to sit next to her and shook her head continuously and said, "No mama, bye bye" until I backed away. I've said it a hundred times and I'll say it again... I cannot believe what a BIG GIRL she is!!

:) Playing :)

Nothing finishes a big day at the pool like a big ice cream cone... which she insists on eating with a spoon. She gets this from her dad- he's one of those people who eats pizza with a fork. :)

Congratulations to those of you that actually finished this post! I know it was a long one! Hope you all are having as fun filled and busy a summer as we are! :)

To the awesome people...

2011-08-01T06:09:00.000-07:00

Today has been a great day already. And I have already been in tears once. Doesn't sound right, huh? Let me explain. I got into work this morning to find an email from a new friend of mine, Tara. If you have been reading for a while you might recognize this name as the amazing cousin of our heart friends, the Ritchies, whose little sweetheart Charley passed away suddenly in May. Tara and I have been keeping in touch throughout our efforts to help Kristin and Matt create something special to honor their sweet Charlotte. Today Tara sent me this.

This is a picture of the 114 books that our amazing friends and family donated in honor of sweet Charlotte.

YES, ONE HUNDRED AND FOURTEEN BOOKS.

Now do you understand the tears? She also sent me this picture of the sticker that they are affixing to each and every one of these books before they are donated to the hospital where Charlotte was treated.

I am so thankful to have such amazing people in our life who take the time to not only read our blog, but to take action and help us help others. We had 19 families donate!! That is unbelievable. I cannot believe how lucky we are to know such great people.
Thank you, thank you, thank you, from the bottom of my heart for helping this family do something great in honor of one sweet little girl.
Oh geez.. now I'm in tears again. Have a wonderful week, all of you awesome people.

A date for the books....

2011-07-28T05:41:00.001-07:00

Today is a WONDERFUL anniversary.

Today is our TWO YEAR anniversary of bringing home our sweet girl for the very first time. At 28 days old, with two open heart surgeries under her belt and some serious care training for mommy and daddy we were on our way. Scared, excited and terrified, but on our way none the less. The last few days in the hospital I really began to lose my mind. I cried continuously and just felt like I couldn't do it anymore. My husband, mom and our nurse noticed this after about day 5 or 6 that I had not for one second stepped out of the hospital once Aly was sent to the floor. I was given strict instructions to get the heck out of there for a little while. I remember Aly's nurse telling me, "If you don't take care of yourself first, you're not going to be able to give Aly what she needs." Jeremy and I left the hospital and went downtown to have dinner and I remember telling Jeremy that I had the weirdest feeling. I guessed it to feel like what it might feel like when you get out of jail. Lights are brighter, the world seemed so different. It was so strange for me to see people going on about their normal daily actitivities. How did they not know what my family was going through? Our lives had screeched to a halt and each day just meshed into the next without me noticing what the date was or even what day of the week it was.

When the moment finally came to take Aly home, we were beside ourselves.

I remember on the ride home feeling so overwhelmed and terrified. We were in such uncharted territory for us and it was SO obvious. We got about halfway home and realized that it was time for Aly to eat... and we didn't have any formula, any bottles and ANYTHING we would need to feed her. How could we not have thought of something like that before getting in the car? We contemplated trying to find a local store and buying formula and bottles (even though we had all this waiting for us at home)... I was seriously scared thinking, "What are we doing?! How could we not have thought of that? Are we going to be able to do this? Can we take care of this sweet little thing like she needs to be taken care of?"

Turns out we could. :) Thanks to our girl for being such a strong little superstar and being surrounded by an amazing medical team who kept a close eye on us, our girl has thrived and is now a feisty little toddler. As with any of these anniversaries, the thought crosses my mind that I wish so bad someone could have just shown me a picture of Aly at two years old and told me, "It's going to be a rough road, but it's going to be okay."

Today is yet another day that reminds me to be thankful for each and every breath we take.

Here's some pictures of our girl on her big day two years ago today:

Aly in her going home outfit that we bought the day we found out she was a girl. She wasn't very happy about it but she wasn't happy about a whole lot in the hospital.

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Alys first time through the front door of our home. The door she now walks through on her own, while pushing my hand away and saying "Aly do mama, Aly do" (meaning she will do it by herself :) ).

And here's a couple I snapped this morning (not so great ones, but I wanted an exact two year comparison) of her blowing me kisses and laughing at her cartoons.

And last but not least, a picture of her 2 year picture.

How far you've come, our little Aly bear. :)

Final Verdict- we're goin' tubin'

2011-07-25T13:11:00.000-07:00

So today we had our E.N.T. (Ear, Nose, Throat) consult at U of M to discuss whether or not we would go ahead with putting tubes in Miss Aly's ears. Since we got the referral from our pediatrician, little miss thang has had TWO, yes TWO more double ear infections. So this appointment could not have come fast enough.
Here's Aly watching her favorite princess movie, Tangled, in bumper to bumper traffic on our way to Ann Arbor last night.

We thought what a greatidea it would be to go down the night before and stay in a hotel since we had to be there so early in the morning. Obviously not taking into account two guarantees from a Michigan summer: Sunday night weekend traffic going south and construction. So about an hour later than we had planned on arriving, we rolled into town. We decided to do something fun since we knew Aly would NOT be happy about the appointments in the morning so we went to Chuck E. Cheese where we all had a blast. We ended up being there for almost 3 hours! We didn't even get checked in to our hotel until almost 9pm!! What can I say? Skeeball will get ya every time. ;)

Please ignore the bed head. She took a nice nap on the way down.

She kept telling me "cheese" was on the phone for me. :)

So this morning we went bright and early, had a hearing test and met with the Doctor. He decided that he would like to go ahead and place tubes in Aly's ears at this point.

HALLELUJAH!

I don't know how many more ear infections we could all take. But, apparently, we'll see because he can't get us in until October. And, of course, there is a catch that she must be healthy and not have any antibiotics for 6 weeks prior to surgery. So if she gets an ear infection in that six week time frame and needs antibiotics we will have to reschedule. I'm already getting irritated about the ear infection I'm SURE she will get during that time. I find this antibiotic rule very interesting because we never have had that rule for open heart surgery, but for a very minor, quick ear tube placement we do? Hmmmm... I was also excited to hear that they normally don't intubate for this surgery and then immediately disappointed when they saw she had severe reflux as an infant, they most likely will to reduce the chance of aspiration and to guarantee a safe airway while she is "under". :( BOO. But, she should just be intubated for a couple minutes. It should be an in and out procedure- whole thing taking just a couple hours from check in to recovery and we should be on our way home. I had a few questions that the nurse wasn't sure about and she wanted to check with Aly's surgeon about... but other than that we're set to go. It was SO strange to pack for Ann Arbor for just one night and to do it without crying and being sick to my stomach... normal pre-op stuff for me. As Aly and I pulled off the exit last night and the huge hospital is in the skyline, I can't help but smile and tears come to my eyes. This place is where my daughter was born. It is also where her heart has been repaired 4 times, in my eyes, saving her life every time. It's an emotional place full of memories- scary, happy, sad, terrifying, exhilarating... we've felt every emotion there is within the walls of that hospital. I will be forever grateful. While I am so excited for the new amazing beautiful hospital to open it's doors in December, part of me is a little sad that those rooms that we "lived" in will no longer be. They will be redesigned and used for another purposed and most likely not even look remotely like we will remember then. But, movin' on, movin' up to bigger and better things. I have a sneaking suspicion that this new hospital will be so wonderful it might bump us up on the U.S. New 50 Top Childrens Hospitals in Cardiology and Heart Surgery to #2 next year. (hee, hee... Yes, I only added that to tease all my CHOP friends who are fiercely loyal to their hospital. I don't blame you- I feel the same way about U of M.. Look out Philly.. ;) )

Something else that happened today, was that it was confirmed that Aly bear is FAMOUS! We were walking down the hallway and heard, "Aly?" from behind us. We turned around and and came face to face with my previously just online Blog/Facebook friend William. William and his wife Sarah welcomed their son Evan last week. William recognized Aly from Facebook! Evan was born with what was initially thought to be HLHS, but through futher investigation was diagnosed with tricuspid atresia with levo-transposition of the great arteries (click those words for an explanation on Evan's website of what that is) His treatment plan is to follow the same surgeries that Aly has had and his Norwood is scheduled for Thursday. Please keep them in your thoughts and prayers this week as they prepare to hand their 7 day old son over for surgery. Click here to be redirected to their website to show them some love and let them know they are in your thoughts and prayers. Just tell 'em Aly sent ya ;)

Thanks for checking in on us!

***P.S. Little survey- new font- good? bad? I can't decide if I like it or if it's too hard to read. Your thoughts? Thanks!****

Different news, Surprising (not really) news and BIG NEWS!!

2011-07-12T15:40:00.000-07:00

*** Quick note: For those still looking to contribute to Books For Charley, I will be placing our order one week from tomorrow. I have gotten emails from a few people who prefer to send checks and that is great. If you would like to do that, just email me at jenny(at)alyjeansspecialheart(dot)com and I will get you my address. We are over 100 books right now- let's see how many we can get! Each and every book is one more footprint, honoring the memory of sweet Charlotte. Thank you to all of you who have donated!!! ***

Aly had her two year check up today. We learned some fun exciting information and some crappy not so fun information.

First and foremost, OF COURSE.. as soon as we walked in the meltdown commenced. It's never easy to watch your child freak out like that and a large part of me feels just awful for her everytime. Another little part of me is, dare I say, a little used to it? But these poor nurses... They don't know what's coming. Then they feel so bad and we must seem so odd that we aren't bothered by it more. I guess they really probably don't understand just how many doctors appointments she has had in her life and how many times we have seen this. So, last month when we saw the new pediatrician and Aly was awesome? Yep, that was a fluke of grand proportions.
So in different news, today the doctor said Aly has an Umbilical hernia. Jeremy and I had both noticed a little bulge right above her belly button and I pretty much self diagnosed this myself when I was watching "Life As We Know It" the other day for the umpteeth time and noticed the belly button in the movie looked very similar to Alys. And no, I do not take medical advice from romantic comedies normally. It just made me think maybe that's what was going on. Good news is that it is no big deal and will probably work itself out by the time she is somewhere around 3-4.
In not suprising news, Aly has the beginnings of ANOTHER, yes, that's right folks, ANOTHER double ear infection. The consult with ENT cannot get here fast enough. Two weeks from yesterday. And then who knows how long before we get the procedure scheduled. grrrrrrr...
And the best for last, HEADLINE NEWS, (or at least should be) ALY JEAN HAS MADE HUGE STRIDES! She is now, for the first time in her life, in the 25TH percentile for weight and height!!! Seriously since day one of Aly's life we have been struggling to just barely keep her on the charts and now, the 25TH percentile?!? You should see the size of the stupid grin on my face as I type this. I could not be happier about this. I know we are not out of the woods with weight gain issues, but Post Fontan.... SO FAR, SO AWESOME!! Life Post Fontan is just phenomenal and I couldn't possibly be more thankful. Aly has more energy every single day. I don't think she ever stops talking unless she is sound asleep and as of the last few days, she doesn't stop dancing or spinning in circles either. We went to the beach the other day and played hard in the spray park for hours. She was running all over the place, laughing, jumping, splashing, bossing everybody around (STILL WORKING ON THAT TERRIBLE TWOS BUSINESS), just having the best time. Our summer has been filled with so much fun already. We are just enjoying the next few months before the yucky Michigan weather kicks back in, my classes start up, (I'm a crazy person- I start my graduate program in the Fall- apparently I love a good challenge ;) ) and life gets busier again. We are enjoying every day, every laugh, every tantrum, every smile with the realization that today is today and that's all that matters.

Write on your heart that every day is the best day of the year.

-Ralph Waldo Emerson

Oops. HELP.

2011-07-07T17:21:00.000-07:00

FIRST OF ALL......If you haven't had a chance to check out "Books for Charley" please click here to redirect to my previous post. Please help us honor this little sweetheart. The response I have gotten so far has been unbelievable! We totally appreciate everyones support. Keep it comin'- hopefully we can reach our goal of 100 books!!!

Aly had a cardiology appointment today- her 2nd since her Fontan in March. So as always I was excited/nervous/worried all morning. Overall everything went really well. OF COURSE Aly had her signature meltdown as soon as the stickers came out for the EKG and lastest until Dr. Z was done examining her. But like we laughed about with Dr. Z today, we would be more worried if she wasn't screaming and throwing her normal fit, right? :) Aly's sats were 95 in the middle of a crying screaming meltdown. We were happy to see this, Dr. Z was REALLY happy to see this. In his opinion, at this point he thinks the fenestration from the Fontan is closed or very very small on it's way to closing. This is fantastic news. The fenestration is a hole cut in the baffle (wall) that they built in Aly's heart during the Fontan. It is kind of like an overflow leak for her new circulation. The purpose is that while her heart gets used to the new circulation it will have a little leeway so the pressures won't get too high. Does that make sense? Hopefully I explained that well. Normally if the fenestration does not close on it's own within 12-18 months, they would do a cardiac catheterization to close it. So we're pretty excited that it sounds like we are not looking at that. :) :) :)
In other AMAZING news our little skinny minnie gained a POUND AND A HALF in the last two months!! That is more than she gained the entire time between her first and second birthday. WHEW. I think he newfound obsession with hot dogs can be credited for some of this. Girlie would eat hot dogs for every meal (and, I'm not going to lie, sometimes does. When your picky eater two year old weighs 20 pounds you'll let her eat just about whatever she wants whenever she wants it. Or at least, that's what we do).
Our last piece of amazing news is that we are down one more medication! We now have three left! We talked today about long term what he expects when it comes to medication and got a vague but honest answer. He said he does have some Fontans who are only on one baby aspirin everyday but he did say that was definitely the minority. He said most need some support through blood pressure medication and for others lasix to help with fluid retention. So basically he said, "We'll see". I'm fine with that. The only thing that makes Aly's day any different than a boring old healthy heart child ( ;) ) is getting her medications. I would say this takes about 45 seconds of her day, two times a day and about a total of 1 and 1/2 minutes for me to fill, give and clean up. So under two minutes of our day is different everyday. I'll take it and feel blessed. Obviously I would love for her to be the minority and not have to take medication but it really makes no difference to me. Actually, I wouldn't mind if she were to be on Enalapril and Lasix. At U of M during our Fontan stay, I got into a conversation with a Nurse Practitioner about long term medications and she basically said there is absolutely no proof that the Lasix and Enalapril hurt anything- they only help, so why not just stay on them? Sounds good to me. But of course, if Dr. Z decides she doesn't need them anymore, I will not be arguing with him. :)

So you're probaby thinking, "Jenny this is all wonderful. Why in the world is the title of this post Oops. HELP" Valid point.

So as we were wrapping things up with Dr. Z, Aly was being a little snotty and bossy, which we normally turn our heads to at Drs appointments because, well, they suck and aren't fun and I don't blame her. Obviously we don't let her be mean but a little attitude is ignored for that hour. So as she was showing Dr Z this not so beautiful side of her personality he joked, "oh boy.. what a princess... bet I can guess who makes the rules are here". Yeeeaaaa... This is where Oops comes in. So Aly is not two. As much as I have mentioned that we are hitting the terrible twos with her attitude, I am met with the response, "Just wait until 3". Yikes. I must admit, I'm terrified. Jeremy and I have been learning first hand lately how quickly a bad habit can begin and how hard it is to break. For instance, sleeping. Sleeping has never been Aly's strong suit (much to her sleep-loving parents dismay ;) ). She has never been that baby that will sleep 10-12 hours straight. Consider me green with envy if this is your situation. A few weeks ago, Aly woke up at her normal anywhere between 5:30-6:30 in the morning. Jeremy and I were so exhausted. Jeremy pulled up her little princess foam couch next to her bed and laid down. Much to his surprise, she grabbed her blankey, laid back down and that's how they slept until 7:30am! I was so happy, I could have cried. (Not really, but for dramatic emphasis... ) WELL... Miss Aly did not forget this and how much she enjoyed and seriously ever since that morning we have to lay next to her to get her to go to sleep. At night, at naptime... all the time. We realized the other day that this cannot be the way it is. Before this, Aly did really well putting herself to sleep and we could lay her in bed wide awake and she would say "nigh-nigh" and go to sleep. So we've tried not doing it and she just SCREAMS and SCREAMS and SCREAMS and bangs on her door until one of us comes in there. PROBLEM #1. Are you thinking, "there is more than 1 problem with sleeping?" SURE IS. PROBLEM #2- I got up to go to the gym at 5:30 the other morning and Aly woke up as soon as I left. Jeremy was tired and just brought her into bed with him and she fell right back asleep and slept until he had to wake her up at 8:30! Awesome, right? I'm sure you can see where this is going. Another bad habit started that we cannot stop!! If we don't bring her in our bed or lay next to her than she just wants to be up for the day. H-E-L-P. Any advice? Anything? Bueller? PLEASE!
Any other advice on handling two year old behavior, such as hitting, screaming (I have a friend whose child does this- my own child would never hit me and scream NOOOO at the top of her lungs in the grocery store. I'll pass your advice on to her if you have any. Um... did you fall for that? ) would be GREATLY appreciated. I truly do not want to be one of those parents whose child runs the show. I think structure and discipline (I don't spank or hit in anyway- please don't even suggest it because it's not going to happen) at an early age are key but I struggle on how to handle it.

If you have $6, I want it. Um... please. :)

2011-07-07T04:54:00.000-07:00

We have been so blessed to make tons of new friends since we first were thrust into the world of Congenital Heart Defects 2 years, 2 months and 2 days ago. One of our new friends is sweet Miss Charlotte. Her family started a blog for her, which was how we became acquainted. Here is her website. This picture below was taken on May 30, 2011 and posted about in this entry called, "Sunshine, Swings and Smiles", in which her mother posted about what a wonderful holiday weekend they had playing at the park and how happy they were that unlike the year before, they got to be home as a family instead of in the hospital. She finished the post off with "Here's to the start of a HEALTHY summer and lots of sunshine!"

The next day, Charlotte earned her angel wings.

Stories like this really hit home hard. It is a reality that slaps you in the face with the awful truth-

No one is ever promised a tomorrow.

Please read the following from a post her mom wrote just the other day....

"Last week I got an email from my cousin Tara that found me covered in goosebumps and with eyes full of tears before I was even two full sentences into it. These weren't sad tears (for once!) but rather tears that resulted from a first-hand encounter with the generosity of others.
Tara's message started out as follows..

"Ever since I heard about Charlotte earning her wings, I knew that I wanted to do something to honor her. A couple of weeks ago I was at Borders buying a book and at the counter they asked me if I wanted to purchase a children's book for Children's Hospital. I did it in honor of your little girl, but that wasn't enough."

Wasn't enough? Where was she going with this?!
She continued to tell me about an idea to take that simple book donation to a whole new level.
Tara has 2 beautiful little girls who both celebrate summer birthdays. For their party this year, they are asking that their guests each bring a book or 2 in place of gifts. These books will then be given to Children's Hospital in memory of our little girl. Wow--how cool is that?
As if the above wasn't awesome enough, Tara also turned her idea into a Facebook event entitled "Books for Charley." This means that whoever you are, where ever you are, you are able to participate! If you are on Facebook, just search for Books for Charley! If you aren't on Facebook and are interested in donating an infant/children's book, please let me know and we can figure out a mailing/drop-off plan! "

What a wonderful way to remember sweet Charley and make a childs day in the hospital. Each book will be affixed with a sticker that it was donated in memory of this little sweetheart. Aly has been the recipient of many many books that were donated during our hospital stays and I feel like this is another way to pay forward what we have received.

Wanna help? Me too. I've been looking around online on the best way we can do this with the least amount of effort possible. I know that most of us have the best intentions but don't have the time to go to the store and then to the post office.... I want to do this for you. I have figured out that I can get books for less than $3 a piece!! I would be more than happy to purchase a bunch of books and mail them in. Would you like to donate? I'll make this really really super easy-

1. Go to http://www.paypal.com/
2. Click "Send Money"
3. Enter the amount you want to send and click the button for "Buying something"
4. Click next and enter my email address jenmarielincoln(at)yahoo(dot)com. (write it as if you were sending an email)
5. Enter and submit the requested information
6. DONE! Please email me/facebook me/blog comment/call me that you made a donation for Books for Charley.

Should take less than 3 minutes. And we can help this family create an amazing memorial project in honor of their sweet little girl. Just $6 can get 2 books!! I will mail these books as a donation from Team Aly Jean.

Thank you so much for your support and for helping us remember Sweet Charley.

Location:N Jefferson Ave,Midland,United States

Aly Jean is TWO-AH!!!!

2011-06-29T18:35:00.000-07:00

Tomorrow morning at 4:02am, our baby girl turns two years old. (or "TWO-AH" as she says) **sniff, sniff**

Our little girl has come along way from this,

This was just moments after she was born. Her very first picture.

to this.

I have no idea why she is curling her toes like that.. but it's adorable, isn't it? :)

With a lot of bumpy terrain in between.

We couldn't be more proud of our little bear. She is so smart, beautiful, strong, willful (understatment- terrible 2's), hilarious... I could go on for days. We feel like such lucky people that we were chosen to be our little sweethearts parents. She makes us laugh on a daily basis and she gives us a reason to smile always. This weekend we had her a little birthday party.

And she was pretty excited about it. :)

We got an amazing cake donated through an organization called Icing Smiles. If you have never heard of them, you MUST click here and check them out. Their mission is:

Icing Smiles is a non profit organization that provides custom celebration cakes and other treats to families impacted by critical illness of a child. We understand that the simple things, like a birthday cake, are luxuries to a family battling illness. Our goal is to create a custom cake for the ill child or their sibling that will provide a temporary escape from worry and create a positive memory during a difficult time.

An amazing organization, doing an amazing thing. They hooked us up with a local bakery, Sugarhigh Bakery and they did a wonderful job on Aly's cake. We spoke with them on Saturday and they told us they were staying late after they closed (at 9 p.m.) to work on Aly's cake. We were so touched that they were putting so much effort into a cake for our little girl. Ok, so I'm sure you want to see, right? Check this out!!

How great, right? Thank you so much Icing Smiles and Sugarhigh Bakery for helping to give our girl the special day she deserved!

After we opened presents, partied to some Dora the Explorer music and ate lunch it was off to the pool! Where we all (moms, dads and kids alike) had such a good time. We hung out at the kids pool for HOURS. The grandmas took some relaxing hot tubbing time, overlooking the golf course where a couple of party-goers daddies were golfing. Fun for the whole family I tell ya. :)

Aly and her friend Paige taking a break :)

And of course, it wouldn't be another year, if I didn't make a slide show of what Princess Buttercup (a nickname she got when I was still in my first trimester of pregnancy with her. Grandpa just KNEW it was going to be a girl and low and behold... and no, we've never heard the end of how he was "right". ;) ) has been up to this past year.

One last request.. those of you that have been around the blog for a while know the drill. I print Aly's blog into a hard cover book every year and I like to end it on her birthday with comments from all her readers. So please take a second and leave a quick comment wishing Aly Happy Birthday and letting her know you're there and who you are. I LOVE these comments. It will be so neat when she is an adult to look back and see how many people were following her story, praying for her, keeping her in their thoughts and wishing the best for her. THANK YOU!!!

WOOHOO times 2!!

2011-06-21T17:56:00.000-07:00

Today we took Aly to her new pediatrician for the first time. I know I've discussed a little that I wasn't IN LOVE with our pediatrician but never really got up the nerve to switch. Well, we switched insurance and they made the decision for us. We had to find a new one who was listed as a possible Primary Care Physician through them so they made that easy.
First of all, I was so excited to hear that they had a "well waiting room" and a "sick waiting room". Where was that all of Aly's life when one of us was walking her up and down the hallway while the other waited in the waiting room to avoid the plethora of germs floating around the one small waiting room? I'm pretty excited about it- I know I'm such a weirdo. Who gets excited about stuff like that? :)

So today was not a well visit- it was a follow up visit from a trip to Urgent Care that Aly and I took last week that showed us, yet again, another (this makes SEVEN) double ear infection. Our old pediatrician was dragging her feet about tubes and not that I was really hoping my daughter could go under general anesethia twice this year but I've heard it makes a phenomenal difference. So we discussed it today and we got a referral to an ENT for the tubes. WOOHOO #1! And, I bet you're wondering if I am REALLY THAT anal that I insisted Aly have this 15 minute procedure at U of M, almost two hours from our house which has a hospital about 1/4 mile away from it that does this procedure there too? YOU BETCHA. Since she has to go under general anesthesia, be it for 1 minute, 10 minutes or 4 hours I would prefer it be done with all the possible bases covered. So now we wait for our appointment. I can't wait cuz poor girly absolutely DESPISES adding any medications to her daily schedule. It's like what she takes for her heart is her very top limit and one more ruins everything. She hates taking any of them now and it is NOT FUN for any of us to try and get her to take 6 meds and an aspirin in the morning and 4 meds in the evening. Normally it's no biggie for her but when you add an antiobiotic.. look out. So basically we are excited to get this done and behind us.

So why the second woohoo, you ask? Look at this happy little girl. Being a happy little girl in a DOCTORS OFFICE. Yes folks, you read that right. I don't know what happened today but I have never met THIS little girl before. She was a charmer from when we hit the door. Laughing, smiling, patiently allowing her temperature to be checked, letting them listen to her heart... Jeremy and I were just floored. We have never seen her so agreeable and happy to be in a doctors office. We're hoping this wasn't a fluke. :) And for your viewing pleasure, our little sweetness and her sweet adorable counting. :)

YouTube Video

Pieces of the puzzle....

2011-06-17T08:51:00.000-07:00

Many many things have changed since that fateful day 1 year, 1 month and 8 days ago when we found out about Aly's special heart. Friendships have been broken, family has grown apart to the point of a complete disconnect, my outlook on everything has changed. These things are mostly results of decisions we have made. I've said it before and felt bad saying it because I am not a fan of when people say these words, but sometimes people just don't get it. I HATE when people say that. It happens all the time- people tell other people who haven't had kids yet that they don't get it, people tell single people who aren't married that they don't get it... the list goes on and on. Like "getting it" is some secret society that you can only join after you've met these mile markers in your life. But sometimes "getting it" is the only way to describe things. Before Aly, I really didn't "get" much of anything. I lived a carefee life. I worked for the weekend every week (ok, I still do that ;) ) and made the most of my weekends and constant vacations. Flying by the seat of my pants, 95% of the time. I couldn't wait to get home on Friday afternoons to read my "People" magazine while chatting on the phone about what we were going to do that night. I was SO concerned about what everybody was up to, always pretty up to date with the gossip mill and quick to judge others and their situations. Let me tell you how quickly I was put in my place by a big dose of reality. Now my decisions were not all about me anymore. I had to make decisions with my husband about what was best for our family. BIG decisions. 41 days after we were given Aly's diagnosis she was here. On that day began a complete transformation for me. I had to drop EVERYTHING I had known and start a new life. I remember the day about 3 weeks after Aly was born that I caught a glimpse of something major happening in the celebrity world on TV as I walked by and I was shocked that I didn't know that already. Later that night after Aly went to sleep I was on the computer surfing around and decided to go to people.com (probably my most visited page B.A. - before Aly) and couldn't believed I had no idea what was going on. What shocked me the most was how much I didn't care. My priorities had now manifested themselves into one big priority- and she was snoozing away 4 feet away from me. I noticed over time, this was to be the pattern for the rest of my life too. I had to take a step back from everything and pray with all my heart that when we were ready to step back there would be some resemblance of the life we left behind- that our friends and family would still be there and understand why we did what we had to do. In the beginning (actually, all along. I just realized as I typed that how many text messages we got before Aly's Fontan that I never answered) we had many many people reach out to us and they never got a response. Not because we didn't care, or didn't appreciate it, but we just couldn't. We were just trying to muster through each day and just living through this took all the energy we had. We had no choice but to turn our backs on the world and focus all of our attention on this little 8 lb. 6 oz. beauty who was in every sense of the words, fighting for her life. We neglected friends and family, we weren't there and supportive to others. Most understood, some did not. I feel awful when I look back at all we were not "present" for (physcially and emotionally) that was happening in friends and families lives. And I don't know, and won't ever know, if we did the right thing or we were just being overly selfish about our situation. All I know is we did what we felt like we had to in order to get through every day. We had to make decisions about who we wanted involved in Aly's life and they were hard to make but necessary. After all Aly had been through we could not fathom the idea that she be hurt by anyone we could protect her from (emotionally- we've never had to worry about anything else). Now we have made it through the tunnel to the light at the end and we are back. We have been lucky enough to be able to step back up and resume our lives and assess the damage, essentially that we have done. We have always, every single day, been appreciative for everything everyone has done for us. Appreciate to the point of bringing me to tears when I think about every single thought and prayer that has been sent our way. We could never ever find the words to truly describe our gratitude- not just for the support but for understanding. I now have had the chance to reflect on what we have done, decisions we have made, bridges that have burned, relationships that have been strengthened and how to move forward. It was so strange and surprising how these things came back to me. Over the last month or so, these things have come to the forefront of my mind. It's as if my mind placed these things in a little box to hold for me to deal with when I am ready, and now, apparently, I am. I have been having the strangest dreams lately that I feel like are my subconscious' way of telling me it's time to face these things. I'm confused on even where to start. I was hoping by writing all of this out, I would come up with a game plan (I'm BIG on game plans) but nothing has come to me so far. Have you been down this road? Have you had these experiences? What did you do? How do you handle it? How do you go about putting your life back together when the puzzle has more pieces now? Do they all still fit?