Birthday Boy!

Here are some cake pictures from Drew's birthday...he's so cute!! My baby is now a toddler! I can't even believe it!

Happy Birthday Drew!

Happy Birthday to my sweet, loving, handsome, brave little man! You make Mommy and Daddy so happy and we are so blessed to have you in our lives.

We love you so much,

We love you so much,

We can't even tell you how much we love you.

You're special to us,

You're special to us,

We're lucky to have you as part of our life.

We love you, we love you, we love you...

We love you, we love you, we love you...

We love you so much,

We love you so much,

We can't even tell you how much we love you.

I changed it up, but that's a lullaby by Barbara Milne called "I love you so much."

Today is his party, I will be sure to post pics later...and share my thoughts on the day. Right now, there is much to do!

Update on Brendan and Talia

Brendan Joseph was born this morning at a healthy 7lbs 7oz and was 17.5 inches. His Mommy and Daddy even got to hold him for awhile before he was whisked away to the NICU. He will be there for an indefinite period of time while they assess what needs to be done. I believe he will undergo a valvuloplasty in the next few days and they will see how that goes. If it helps enough, he may not need the BT Shunt. If it does not, he will have open heart surgery to place the shunt and correct the regurgitation. But, right now, what matters is that he is here and healthy. Maureen, enjoy your little man!!

Talia is still on the vent and her parents have decided against the experimental surgery. Upon further research, it was found that the tricuspid valve replacement has a high mortality rate in infants, so they are going to go with the Glenn and Fontan to create a three chamber heart. Many babies undergo these procedures, and this is the way God made her, so they are not fighting it. Please pray that she is at least able to get off the vent soon and perhaps able to go home prior to the Glenn, as that won't be for a few months yet.

Both of these babies are fighters. They prove that every life deserves a chance and that more needs to be done in the way of research for CHD and to bring awareness to the cause.

Brendan and Talia - Prayers Needed

Please pray for the following families and CHD warriors:

My friend, Maureen, is being induced today at 38 weeks. Her son, Brendan, has severe PS (possibly HRHS) and Tricuspid Valve Regurgitation. She has known for awhile he will need caths and surgery after birth, but at her appointment yesterday, it was discovered that in the last week Brendan has developed serious edema and another measurement is way off from where it should be. It is not good to leave him inside his mother any longer, so he is being born today. Please pray he is healthy as can be at his birth and is stable, this has been such a long road for them and he is such a fighter. He deserves the best chance to start off his life outside the womb.

Also, my friend, Jill, her baby, Talia, is facing experimental surgery this Friday. She was born on May 5th and already underwent a balloon valvuloplasty and a BT Shunt, not to mention she was the 11th baby to undergo in-utero surgery in Boston. Her Tricuspid Valve is prohibiting her right ventricle from growing appropriately, so they are looking to replace it, but there isn't one small enough for her. So, they have to customize it. If this doesn't work, she will have two more surgeries (at least), called the Glenn and the Fontan, to create a heart that works off 3 chambers.

Please pray hard for these CHD warriors and their families.

Some Family and One Year Pics

Thanks to my friend, Fauzeen, and her husband, Aali, for taking family pics and pics of Drew for his one year birthday. SOme of them are available for viewing on her blog:

http://www.fiveriv.com/blog/index.php/2009/05/p-baby-drew-and-family/

Ethan

Please pray for the family of Ethan Bilpo, a brave CHD warrior who courageously fought a battle with HLHS and PLE for 8 yrs. He is safe in Heaven with Jesus now, as he became an angel yesterday morning. On a fellow heart kid's carepage, the following was shared...it is a poem written by a "Heart Mom" who knew Ethan, Stephanie Husted.

I cannot say goodbye Ethan...
I'll close my eyes and smile,
And then my silent prayer will be,
"I'll see you in awhile".
I know your heart is perfect,
I know you ran your race,
I know that each and everyday,
Was given by God's grace.
Tonight, my heart is heavy,
And words are hard to find,
I much prefer to think about,
The things you've left behind.
You've left the gift of laughter,
For those you got to meet,
A charming personality,
So handsome and so sweet.
The gift of hope shared freely,
And prayers in multitude,
The strength to put up quite a fight,
An "I can" attitude...
You've left behind alot of love,
And many hearts can say,
Because I got to know him,
I'm a much better person today.
You've left most precious memories,
I'm thankful that I've been a part,
Of knowing an amazing boy,
With such a special heart.
I will not say goodbye Ethan,
Because the day is near,
When goodbyes, they will be no more,
As God shall wipe each tear.
I'll tell you on that perfect day,
All that is on my mind.
I hope you'll get the chance to see...
What you have left behind.

Rev. 21:4 - And God shall wipe away all tears from their eyes; and there shall be no more death, neither sorrow, nor crying, neither shall there be any more pain: for the former things are passed away



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Geneticist Appt, Remembered the Correct Term, Other Things

Drew will see Dr. Aughton on July 1st. Nothing like waiting! I am going to ask for the blood test to be sure of it, whether visually, or through questioning, he agrees he has it or not. If Drew has Noonan Syndrome, both Bill and I will be tested. If one of us has it, I think they may make us speak with a genetic counselor before having our second child. I know Drew will have to do this if he chooses to have kids. I think that's what makes me sad. I know the syndrome doesn't define my child, I just hate that his life might not end up being exactly what he wants it to be if he does have this. It might give him pause about having kids, or his future wife pause, and that makes my heart sad. I want him to do whatever he wants to do, without worry. Oh well...I need to stop getting ahead of myself.

Also, for those of you who read my post on Drew's follow up, I remembered the correct term for the "pressure of the blood flow," it's called a gradient. It completely slipped my mind yesterday.

Drew and I went to Home Goods today and purchased a toy chest for him. It's red and cute, and I bought a sign that says "Take Me Out to the Ballgame!" and we're going to affix it to the top of the chest. I also got him a couple of other things. I really like that store. I haven't been there much, but they have a lot of cute pieces. If I ever have a room that's fairly eclectic, I will have to go there to purchase some. I think Design on a Dime must utilize that store a lot, along with Designed to Sell. They take it and transform it.

More crawling today! I will have to look into your suggestion, Isabelle. I think he would like that!

Something Positive Today

God showed Himself to me late this afternoon. Drew crawled! It wasn't much, but it was crawling! I really thought he would skip right over it to walking at the rate he was going, content to bounce or scootch to what he wanted. But, he showed me! And God gave me something to smile about, and cheer on, today.

I will keep all of you posted on the appointment with the geneticist, Dr. Aughton. I am going to call tomorrow. I really hope we don't have to wait 2 months or something crazy for an appointment. I hate waiting. I am probably one of the most impatient people you will ever meet in your lifetime. I hide it well, but it's who I am! :) I have been reading more on legitimate sites about Noonan...I have come across a few other "anomalies" that Drew has that seem consistent with it, so we'll see. If he has it, Bill and I will also be tested to see if we passed it down, or if it is spontaneous.

If it's not one thing...

...it's another.

Today was Drew's 2nd post op follow up. The report on his heart was favorable, although he does have some mild narrowing in his main pulmonary artery, at the repair site. The stenosis is in the mild range and the pressure of the blood flow (because I can't remember the correct term right now) is at 20. To give you a frame of reference, before Drew's OHS, it was at a 60. Someone without PS would be at a 12, if it even registered. So, very mild. Dr. Cutler wants to see him back right before his 2nd birthday, so one year, to give his heart time to grow and see how the stenosis does. She feels that, if he needs anything further, another balloon valvuloplasty will take care of the issue since it's in the repaired site and there is patch material in there now. She is hopeful he will not need anything in the future, but it's a waiting game at this point.

The other issue is this - because his last 3 EKGs have shown he has something called "left axis deviation," when this was not present before, and because his CHD was Supravalvar PS, with ASD, she wants him to see a geneticist to be tested for Noonan's Syndrome. You can find out more about Noonan's Syndrome here:

http://www.mayoclinic.com/health/noonan-syndrome/DS00857

So, I will be making an appt with the Pediatric Geneticist at Beaumont shortly, because I hate waiting. He isn't exhibiting any symptoms of Noonan's, except his CHD and the issue with his EKG showing the left axis deviation. But, I would be lying if I said I wasn't a bit upset and very disappointed in this news. I did not walk into today's appointment with any false hopes about his heart, I knew that there was always the possibility the stenosis could creep back in, but I am really disappointed that it might be truly a genetic issue. This puts his children at greater risk, if it's found in one of us, as well as our own future children, for having this syndrome AND CHDs. We will have to wait and see what Dr. Aughton has to say. Please pray for us to accept what we cannot change. I try to remember the Serenity Prayer, and it's hard. He's my beautiful baby...it's hard to think that something may be genetically wrong with him.

Check Us Out!

Our Chapter is not only official, we are on the web!

http://www.itsmyheart.org/imh-chapters/michigan/metro-detroit/

And again, here is our email address:

metrodetroit@itsmyheart.org

If you know of anyone in the Metro Detroit area who is in need of support during this time, please don't hesitate to contact us. If you, or someone you know, would like to become involved, please don't hesitate to contact us. If you are interested in helping the Chapter through financial contribution or have something to donate to us, here are our upcoming fundraisers (more details to follow in subsequent posts):

Scrapbooking Fundraiser - in need of scrapbooking items to be donated; date/location TBD

Bake Sale - in need of baked goods to be donated; hoping to have this at CHM, date/time TBD

Big House Big Heart 5K - October 4, 2009 at UofM
*We are putting together a team for the race comprised of runners and walkers. For a minimum donation of $25, you will get a team t-shirt. If your child has a CHD, he or she will be given a special t-shirt as well. If you cannot participate, you can still help us by donating to the people involved. All the runners/walkers will need to raise funds to participate, so your donations will help our chapter raise more money and help more people.
*More information to come, including links to the fundraising page!

Again, if you are interested in helping us in ANY way, please contact us at the email address listed above!

Thank you!

Children are a gift from God...

My sister, Suzanne, sent this to me in an email. A friend of her's had posted it on her blog. I thought it was profound.

Touched By Grace

Little Miracle: To Honor a Brief, Holy Life

May 13th, 2009 by Jessica Adams

I wrote these small contemplations a few weeks before my mother was scheduled to give birth to the sixth child of our family, little Sean Patrick. My parents and I had known for about four or five months that Sean had a rare condition called Limb-Body-Wall-Complex. What this meant was that all his organs had formed outside his body, his spine was twisted into a ninety degree angle, and his heart was pumping blood the completely opposite direction. This disease is one-hundred-percent fatal and the longest a baby has ever lived with this disease was about fifteen minutes. The doctors encouraged my mother to abort little Sean. Of course, my family chose life.

It is said that Momma’s baby, our baby, will die. Little Miracle, for that is what I am already calling him, is broken. He is sweet and dear, and already a life-filled miracle, but science says he will not live. Science requires a strong, healthy mass of cells, muscles, nerves, and bones to survive in this world. Little Miracle is not whole. How crazy that a substance as unimaginably beautiful as the soul must be contained in something so material and tangible as the body.
Why must Little Miracle not live with us? Why does the world require that he bring a healthy body with him? Little Miracle is a blessing which everyone says will be taken away. But Little Miracle is beautiful, and though some would say that his death will be a loss to my family, it is not so.

Little Miracle is a gift, but he does not belong here. I do not belong here. None of us belong here. If the Divine desires only to grace us with Little Miracle’s presence for a few fleeting moments, so be it. If He chooses to allow him to stay with us for a longer time, if He chooses to remold his poor, broken body, so be it. That is for our Father to decide. And if He does choose to remold Little Miracle’s body into that of a wholesome, happy baby all will call our baby “a miracle.” But I know better. Our baby, myself, my family, and all others are miracles. Whether Little Miracle lives or dies, from the moment of conception he always has been, and always will be, a miracle. He is precious. He is a gift. And he is beautiful.

On January 26, my little brother was born and quickly surrounded by the five of us kids and my father. Sean fought for my family, fought for life, a glorious hour and nine minutes. And then, as silently as he had entered, he left.

Though he brought much pain and sadness to my family, Sean was also a great blessing. When I wrote this small tribute to Sean I still did not know if he would live or die. However, four months after his birth and death my thoughts on the subject have not changed. Sean is truly a miracle. I am extremely happy he came to us, and touched my family for those few fleeting moments. My mother today says that she would not change what happened on January 26 for anything. Though I am not yet at that point, and though I still do wish that I could hold and look at my tiny little brother, I am glad he is in a better place and I cannot wait to see him again. As my five year old sister says, “Sean is lucky, because he never had to get in trouble.”

Jessica is a 16-year-old junior at a Catholic High School where she is active in athletics. She is very involved in her parish and community and looks forward to attending college and continuing to work on the craft of writing.

Such wisdom for someone so young.

Also, just a quick note that the chapter is up, running, and official! Please email metrodetroit@itsmyheart.org for more information! And check back for updates on fundraising and other ways you can help out. The chapter isn't just for CHD parents, kids and teens, it's for anyone interested in learning how they can help advocate and support families touched by CHD.

Recent Pics

Drew sitting up in his crib, his latest accomplishment

Drew at his friend, Evan's birthday party:

Drew's Incision, 6 Weeks Post Op:

Kayleigh

Please pray for the family of Kayleigh Freeman. She became an angel last night, after 11 months of life here on Earth. God decided to call her home to Him and her parents had to let her go.

You can read more about her here:

http://kayleighannefreeman.blogspot.com/

Mother's Day 2009

HAPPY MOTHER'S DAY to all Moms, Grandmas, and to those who are like a mother to someone!

My Mother's Day present came early, as Drew started saying Mama on Thursday!

Our day was pretty uneventful, but really nice! I got to "sleep in" before going to breakfast and Mass this morning. We're in transition at our Church, as our old Pastor (who was actually fairly new) was booted and we're waiting on a new Pastor to come to our Church. So, we have all these visiting Priests helping out and the Priest today told a lot of jokes, but forgot to bless all the Mothers!!!!! We did buy carnations to support Right to Life. Everytime I am at Church, I remember that I need to call the office and speak with the blood drive coordinator. I REALLY need to get on that this week. After Mass, we hung out at home for awhile, as Drew really needed a nap. So, I drank my berry chai from Starbucks (yum!) and watched my SNL from last night. Meh, it was OK. I like Justin Timberlake, and some of it was funny, but more and more, I am just watching it for Weekend Update. After Drew woke up and ate, we went to Art Van and took a look at some potential living room furniture...and I think we found a set we really like. So, I am super excited to get a move on with the basement and redoing the living room! YAY! Bill is making me dinner now, after getting Drew down for the night. We're having shrimp on skewers with veggies and this awesome salad he makes. Can't wait!! Next Saturday, I have my gift to myself...a facial and my hair appt. Next Sunday are Drew's pics, so we're finally getting some professional family pics too! My hair is a mess, so it needs some love. And I've never had a facial, so I am SUPER excited! Bill's gift to me were beautiful roses he and Drew picked out (will have to post pics later) and someone coming in to clean the house for me. He's such a good hubby!

I hope everyone had a great weekend and a wonderful day!

Sleep...

We all need more of it in this house. Tonight, for maybe the 5th time in his life, Drew fell asleep on his own. Because of his heart, we were never able to transition him to falling asleep in his crib because he had to be pretty much asleep when we put him down, none of this "put them down drowsy" stuff. Plus, to be honest, we like rocking with him at night and at naps, it's our quiet time with him. BUT, it is becoming harder to do this now...and he is "fighting" sleep a lot more, especially since it's still light out. So, lately, we've just been putting him down in his crib and letting him play, fuss, talk, etc... When he gets really upset, we go in a comfort him. Usually it involves us picking him back up and rocking him to sleep, and by this point, he's usually had enough and falls asleep quickly. Tonight, it took about 10 minutes and he was out.

Now, the other issue is Drew staying asleep, which teething has not been helping. Bill and I have been up and down with him ever since returning from the hospital, when before he had been sleeping through the night pretty decently. We know it's the teeth, he seems to be filling his mouth with them since mid-March. Poor baby! Last night, Bill was so out of it that, when it was his turn to get up with Drew for the paci and bum pat, he just sleepily asked me "what do I do?" I had to laugh. Then, this morning, he woke up for work at 8:10. Yeah, he's supposed to be there at 8:00am. Clearly, we need more sleep. Even Drew does...he's ready for naps in less and less time these days. Please pray we get some relief from the teething soon so we can all rest appropriately.

Well, Sunday is Mother's Day! Last year was my first Mother's Day and the first year I felt like celebrating it. Growing up, I loathed this day. I hated being the only one in my class without a Mom, making flowery projects for no one, while my teachers told me my Dad would love it. I wanted to ask them, "have you met my Dad? oh wait, yes you have because he's extremely involved in my academic life. So, does he look like someone who would want a doily?" But, I knew better...I went to Catholic school during a time when public schools didn't take anything from kids, so you can imagine how little our teachers took from us. And no, I didn't have many Nuns ;) Anyway, I hated Mother's Day. I always felt like it was just a big slap in the face to me. Another big reminder of what I didn't have...and what I desperately needed...my mother. There have been other moments in life where I've missed her terribly...like choosing a wedding dress. My bridesmaids, sisters and stepmom were wonderful, and went with me to fittings, etc, but I always noticed how differently we were treated. There were no mimosas when it was just my friends or my sisters and me, there was no special moment when I walked out of the room, no tears in anyone's eyes. I would look around and feel like I got punched in the stomach watching all the moms and daughters sharing those special moments. Now that I have Drew, I have a different perspective on it, of course. I still miss not having my own mother to share the day with, but I can make new, good memories of the day with my own children. I appreciate the other people in my life who acted as a mother in her absence, I always have. And to those people, both here and in Heaven, I want to say HAPPY MOTHER'S DAY and I LOVE YOU! Happy Mother's Day to all the Moms out there. Enjoy your special day!

Life

Life is so busy right now. So much to do. So much to be thankful for. Soon we will celebrate Drew's first birthday. One year of his smiles, his laughs and his milestones. A year of many ups and a few downs. A year that tested our strength...and brought us closer to God.

Right now, I am busying myself with three things, in addition to the normal day to day Drew activities and household things:

Our IMH Chapter
Drew's Birthday Party
Applying to become a Child Life Specialist

I have so enjoyed this time with Drew, not having to work, and will still have many more months of this, but I have also decided to return to work as a Child Life Specialist. I have always wanted to work with children, and kind of got away from that for awhile. For those of you who don't know, my BA is in Psychology and I have my Masters in Social Work. I used to be a family therapist, a long time ago, and I worked a lot with kids. While doing this, I would be at CHM with a lot of my kids for various reasons and I always loved the job those in Child Life did. I thought it was so meaningful and awesome. Since I feel I have time to choose what I want to do when I return to work, I am taking this opportunity to go in a new direction...but still very similar. So, right now, I am getting my transcripts in order to have my coursework approved by the Child Life Council. Next step is volunteer hours. Then, in September, my application will be turned in to Children's Hospital of Michigan for a winter internship. Thus, all summer, I will be working on that application, in addition to having summertime fun with Drew, Bill and Maggie. This will be hard work, no doubt, and there are no promises...but I feel good about it. I feel good about the choices I am making lately to start a chapter of IMH and go in a different path in my professional life. I feel these choices will make me a better Mom in the end.

Bill and I are both busy with the house as well. As I mentioned in a previous post, we have a lot we would like to get done on the house this summer. So, I started today on the basement. Wow, what a nightmare. I need the Clean Sweep crew, but thankfully I am following their guidelines and it seems to be making life a bit easier. We just have so much STUFF. We are both packrats, which is bad, and things just need to GO. There are many families who could benefit from what we no longer need. It's time to get these items out of here and into homes that need them. It is so nice to see space where there once was clutter. It's therapeutic in a way...letting go. It's nice.

Drew and I took a walk yesterday evening...I just love evenings in the spring and summer. He fell asleep toward the end of it (about 2 miles), but woke up once we got home. He played in the bath for a bit, then had his bottle and book. During his prayers, I started thinking about my own childhood prayers. Drew's are a combination of Bill's and my childhood prayers. Here are Drew's nighttime prayers:

Now I lay me down to sleep,

I pray the Lord my soul to keep.

Guide me safely through the night,

And wake me with the morning light.

God Bless Grandma and Grandpa,

Grandpap, Grandma Lorie and Grandma Calvano,

All my Aunts and Uncles,

All my Cousins and Friends.

God Bless Mommy and Daddy, and Maggie too.

God Bless me, help me to sleep very nicely

and help me to continue to recover well.

Amen.

The first part is all Bill's, although I had the prayer hanging on my bedroom wall, and the second part is mine and his combined. I also had the line "help me to be a really good girl" which just makes me laugh. Only my Grandma would have a child, when she is 2-5 years old, pray to be good. I miss her...she was one in a million, I tell you.

Alright, this post is getting long and rambling...I pray all of you are having good days and happy times. May God bring comfort to those who need it.

Much love!

Teeth, teeth and more teeth...

Drew has been teething again since 10 days before his surgery, that would be March 17th. He is cutting all four top front teeth now. I think all of them have finally cut through, thank the Lord. But, I looked in his mouth tonight while he was laughing with me at dinner (the only way I can) and I swear, he is getting more bottom teeth now (he already has two) AND his molars. I am SO excited. Although, maybe this will get it all out of the way now?? :)

At least it explains his crazy sleeping patterns...

I hope everyone has had a great weekend! It was pretty quiet around here, which was a nice change of pace for us. Bill started working on touching up our bathroom, we just need to add the fan now and a new light plate and it should be all done. We redid the bathroom about 2.5 yrs ago, right before we got married (I wasn't moving into the house with the nast-o bathroom that was there before), but it's needed some TLC for a bit now. And we never put in a new fan. Life just got away from us. Next up is the master bedroom for touchups, and the outside trim work. We also need a new roof, we're finishing the basement so we have a proper office and family room/playroom, which makes me excited! And that all means that, once this is done, I can redo our living room! WOOT! I am so excited to have new furniture and make it more of a living room, and not so much a family room. I want a place I can go to and read, or entertain in. This will be nice. At some point in the next year or so, we hope to do the kitchen too. The way the market is going, we're going to be in this house for awhile and we want it to be livable and sellable in the end. (is sellable a word??)

Take care!

May 1, 1980

This is the day the Lord called my Mom home.

Today has been 29 yrs since that day. This event has had a profound impact on not only my life, but the lives of my siblings, grandparents and father. It's one of those times you ask "why?" Why would God choose to call home the mother of 4 kids who need her? Clearly, God has His reasons. Maybe she was too good for this earth. I don't know. Sometimes, I find myself thinking about the fact that, since I was 15 months old, I don't even know what her voice sounded like. I could tell you which local anchor is giving the news of the day blindfolded, but I couldn't pick out my own mother's voice if you played it for me. Crazy.

Drew and I went to visit her grave this morning. I had not been able to bring him there before. I had too many emotions about it. But, last night, I decided we were going. We got flowers and made our way there. Since it's been raining for forever, the ground was a soggy, muddy mess. I had to hold Drew the whole time we were there, which sadly was not long. I kept apologizing to my Mom in my head for "rushing through" everything. I will have to take him back there another time. I want to get pictures of him there. I guess that may seem weird to some, but he won't ever get to take a picture WITH her, so this is the best I can hope for.