1 in 100

1 in 100. That's it. That's all you have to be to have a child born with a congenital heart defect. 1 in 100. Wow.

Before Luke was born, we didn't know how common heart defects are (and remember that my niece has ToF, so we weren't strangers to CHDs). Before you learned of Luke's story, did you know how common they are?

Too common. Too many lives taken. Too many parents holding empty baby blankets. Too many siblings trying to figure out where their baby is. Too little research done to prevent CHDs from happening. Seriously, the amount of money spent of research for CHDs is laughable. Why don't heart defects get the coverage they need so that these children can live? I ask myself that question each day.

You may be wondering why I am up in arms about CHDs today? Well, in the blogging/Facebook world, heart moms tend to be like family. We constantly pray for the babies who are fighting and mourn for the babies who we have lost. This week, there have been at least nine angels who have earned their wings due to CHDs. Nine. Nine...and that doesn't even account for the countless children who we have lost who are not part of the blogging community.

Too common. Too many lives taken. Too many parents holding empty baby blankets. Too many siblings trying to figure out where their baby is. Too little research done to prevent CHDs from happening.

Until we can get the attention of the media and force the issue of CHDs, the funding for research will remain the same. If any of you reading this post are involved in any way with media outlets, I am begging you to help spread awareness of CHDs. Losing Luke was the most difficult thing that Tommy and I have ever faced. We don't want any other parents to weep over their child's crib. With more research, hopefully no other parent will be forced to do that. I can give you statistics, personal accounts, as well as point you in the direction of medical professionals who would help shed more light on CHDs.

Thanks for allowing me to vent...it is so difficult to read the beautiful words that these new angel mothers have written, knowing that I have been there, too. Please pray for the souls of the gorgeous children the world has lost this week, including Joshua and Ewan (I followed their stories). Please also continue to pray for my sweet friend Ashley and her beautiful baby girl who will be born with a CHD. God bless!

PS Thank you so much for writing notes to Matthew on the previous post. He loved reading his birthday messages!

Happy Birthday to Matthew

Matthew right after he was born...I'm thinking that I may do a comparison of this pic and Luke's newborn pic. It's uncanny how similar they look.

Matthew's baptism. That gorgeous dress was made by Tommy's Nanny from the same material as his mother's wedding dress.

Messy Matthew

Love this face!

Today, our little man is 6 years old. We celebrated yesterday with a party at the local gymnastics place and went to dinner at Red Robin (or Red Robin...YUM as Matt calls it) as that is where he wanted to go. The photos above are of Matthew through the years and below are some pics from his party. Since he is now our big boy and can read, I want to write a special letter to him. Matthew...this one's for you.

Our sweet Matthew,

I remember when Daddy and I found out that you were a boy. We were excited and nervous all at the same time. We knew how to take care of a girl thanks to Emily, but a boy was something totally different. I hoped that I would be a good "boy mom". I remember going to the store that day and buying your first baby boy outfit. I was so excited to meet you. Now that you are 6 years old, I am still so excited to be a boy mom. Bubba, you are my favorite six year old and I am so thankful you are mine. Here are just a few of the things that I love about you:

* I love your hair, my little brillo head.

* I love your voice and the way that you talk.
* I love that you are our Captain Obvious.

* I love the fact that you can talk to God whenever you want--and that He talks back to you.

* I love that you never take blame for anything.

* I love how much you love your sister and brothers.

* I love your puppy dog eyes.

* I love your dimples.

* I love your enthusiasm for everything.

* I love the way you snuggle with me each morning.

* I love the way you hold your breath when you breathe.

* I love your great big stinky feet.

* I love what a good student you are at school and how well you can read.

* I love that your hands look just like Great Grampa Myers' hands.

* I love the way that you start every sentence with "Mom..."when you are talking to me.

There are so many more things that I love about my Bubba. You, Emily, Luke, and James are the best things that happened to me and Daddy. We are so glad that you are ours and that God blessed us with you. We can't wait to celebrate many more birthdays with you!

Love,

Mommy

PS. If you know Matthew (or even if you don't), please feel free to leave a comment and let him know what YOU love about him and I will let him read them. He would LOVE LOVE LOVE to see what people have to say about him (and so would I :)). Also, please continue to pray for all sick children. I have a friend here who is pregnant with a sweet heart baby and she could use your prayers. God bless you all!

Now for the pictures:

Fun Times

Just wanted to share a few pictures and some video from the past week. James started going to Mother's Day Out at our church (only one day a week), so there are some pics of him along with Em and Matt. Today, we went to the Germantown Festival for the first time since we moved to Memphis. WOW! What a great fair! The kids had so much fun--riding ponies, eating yummy goof, playing games, and riding cool rides. There are some photos and video below.

First Day of MDO. Is he excited or what?

I rarely get a shot with each of them looking at the camera.

Yeah Mom, this backpack is HUGE!

Trying to carry his backpack.

Matt and the striped crab that he named "Spots" (only Matthew).

Emily and "Shelly"

James on the rocket swing ride. He loved it!

Matthew on the rocket ride.

Emily on her horse.

Matthew happy to be on his pony.

Trying to pick up his backpack. I realize that the video is sideways, but you get the idea.

Matthew and James on the rocket swing. This was so funny to watch!






The crabs made Matthew a little nervous at first.

Emily's crab is FAST!

Thanks again for checking on our little family. A lot is going on right now with school, dance, karate, and soccer. Maybe one day I will get photos of these activities, but I'm not making any promises! Please continue to pray for the sick. Another heart warrior was lost a few days ago. May God give peace to little Weston's parents, family, and friends. God bless you all and have a wonderful week!

Be An Advocate

The words that have stuck with me over the past two and a half years are not "hypoplastic left heart", "omphalocele", "NICU", "very sick". No, the words that have truly stuck with me since Luke's birth were spoken by a very wise cardiologist named Dr. Mott at TCH. I remember standing with Tommy next to Luke's crib in the CVICU after his Norwood, just touching him, holding his little hand. Dr. Mott came in, a mild mannered, very kind doctor who had the bedside manner of a saint. We were asking all of our questions (ok, so I was asking the questions, but hey my husband is not much of a talker) and Dr. Mott was so eloquent in his answers. Toward the end of our conversation, Dr. Mott told us the following: "You are your child's best advocate. Doctors and nurses always seem very busy, but if you are concerned about something, then you need to be the one to ask a doctor or nurse." Of course I took these words to heart (and still do, with each of our children), but I never realized how true these words were until we lost Luke.

The reason I want to talk about this is because I know a lot of moms and dads reading this right now who may be dealing with a sick kiddo. I have talked about it before, and I still feel it: I will always feel as though I failed Luke in his last week with us. I knew something was wrong. I told the doctors that he wasn't right. BUT, I wasn't his advocate. I didn't push for an echo at his last clinic visit (on the day he died). No, I was being too selfish. I remember that Tommy was in Atlanta the last week that Luke was alive. I told him that day that I didn't think we would be coming home from the clinic visit, that the cardiologist would admit him to TCH because (again) I knew that something was wrong. So imagine my surprise when she told us that all of his tummy troubles were from reflux (which I still believe he never had) and that his cold hands didn't mean anything. We could go home...no hospital stay. I'm not sharing this so that you will write me notes telling me that I didn't fail him, that I didn't screw up in some way. I am just sharing to let others know how important it is to be your child's advocate. Luke couldn't tell us what was wrong, but as his mother, I knew that something wasn't right. That his heart was having issues. I should have been his advocate and demanded that the cardiologist perform the necessary tests. Instead, I failed. I took the easy way out and I will never forgive myself for that. The what-ifs drive me crazy, but I am confident that Luke is much better off in heaven than he would be here on earth.

Again, I am not writing this post looking for a pity party. No, I want to make sure that everyone reading this remembers our story when they are questioning whether or not to push something with a doctor or surgeon. Ask the questions. Demand the tests. Advocate for your child. If something doesn't feel right to you, let your child's doctor know that you are concerned. You know your child better than anyone. Please take care of them or no one else will.

If your child is a heart patient, I have spoken to a few heart professionals and they are beginning to believe that heart failure begins in the gut. Luke had exhibited "gut" issues the week before he passed (he had never had issues before then). He was vomiting after almost every feeding and he seemed to be in pain. My father and I let them know at the last clinic visit and the cardiologist dismissed his issues as reflux. I took this as the truth as doctors know a whole lot more than I do. Now I realize that Luke's little tummy was probably failing, and I didn't advocate for him.

I know this is yet another deep post, but this is another thing that has weighed on my mind for so long. Tommy and I learned a lot from our experience with Luke. We used this lesson to advocate for James during his NICU stay and continue to advocate for each of our kids. I just really want to encourage each and every one of you to listen to your instincts and to trust your gut. Advocate for your child, because, as Dr. Mott told us: "You are your child's best advocate."

Please continue to pray for all of the sick kiddos. A friend from my MOPS group is expecting a sweet baby girl in December and she just found out that she has a CHD. I believe that this precious child will be just fine, but it is so scary for Mommy and Daddy. Another blogger mommy is expecting a baby boy soon and he also has a CHD as well as hydrops. I am praying so hard that God performs a miracle for this family as they have already lost a baby girl and a baby boy who had HLHS. God bless you all!

Clinic-->ER-->Inpatient-->Baby with Asthma

The title pretty much sums up our weekend. James started getting a runny nose on Wednesday evening, but nothing out of the ordinary. He coughed a little through the night, but again, nothing too crazy. By Thursday night, he was wheezing a lot and didn't respond to his nebulizer treatments. Tommy and I knew that James would end up in the doctor's office on Friday, but we didn't realize how quickly his breathing would deteriorate. On Friday morning, Matthew and I took James to the clinic and he was evaluated right away. The doctor told the nurse to check his O2 sats, give a breathing treatment, and check his sats after that. Do you remember when I talked about triggers a few posts back? Well, checking his O2 sats is a huge trigger for me. I really became upset when James' sats were at 84%. Not good. We gave another treatment in the office, but his respiratory rate was still high (at one point, it was at 80 breaths/minute). Dr. Hayes decided that it would be best if I took James to the ER, so Tommy came to get Matthew and I took James to Methodist. We were in the ER for about 7 hours, where James received 2 one-hour breathing treatments and had an x-ray. James was still retracting while he breathed and his sats and breathing rate were not quite right. So they admitted us with bronchitis and asthma. We stayed overnight on Friday and since he was still breathing quickly and retracting, the doctors decided to keep him last night, too. Tommy took Emily and Matthew to visit us yesterday and today which really helped break up the breathing treatment/pulse ox/blood pressure cycle. I miss Em and Matt when they are not around. James did have some elevated blood pressure readings which set off my blood pressure trigger, but the doctor today was not concerned at all, citing the fact that he was crying and tense during the readings. It still set me off and cause some tears, but I feel better about it now. Mommy and James are glad to be home but boy are we tired!

So, James was officially diagnosed with asthma this weekend. It doesn't surprise us because when we think back about everything we recall how often he has been on steroids and has had breathing treatments. It all kind of makes sense now. Luckily, we have a very specific treatment plan, hoping that the meds will keep an asthma attack at bay throughout the winter months. There is a picture below of Emily and James having some fun in the hospital room cabinet while awaiting discharge (which explains James' street clothes--no more gown). I have also included a video of James trying to "break free" from the playroom on the peds. floor. Emily and Matthew loved playing in that room with James. Thanks for everyone's prayers on Facebook and e-mail. God bless you all!

A List of Firsts...

First off, I want to thank everyone for your support of my last blog entry. It really means a lot to me that people still care, let alone are still reading my *mostly* pointless drivel. So after such an emotional post, I thought I would share some firsts with you all:

First time I was able to get them all looking at the camera at the same time

First day of Second Grade

First day of Kindergarten

First time (in a long time) they have taken a sweet picture together

First time you can tell that he actually has hair in one of my blog entries

NOT the first time he has been a huge mess

First time he stuffed his little body into the cabinets and closed the door

Thank you all for sharing in our "firsts". God bless you all!

Acute

Acute. What does that mean to you? Before Luke was born, the word acute meant geometry. It reminded me of measuring triangles in high school. After Luke and James, acute has taken on an entirely different meaning.

Acute is no longer a memory of Mr. Davis' class in ninth grade. No, it is something much more profound, much more difficult to comprehend. Acute is not a word that a parent wants to hear or for that matter, feel. When I hear the word acute, I cringe.

Medically, I have heard acute many times. It is as if it is "the queen mother of dirty words" (to quote A Christmas Story) in the medical field. No parent ever wants to hear of their child having acute pain or that he is in acute distress. It's just not natural.

This post is not about the word acute in terms of medicine. It is actually about the acute emotional pain that I still feel at times. The pain that is so difficult at times, so unbearable, that only tears can make it go away. I understand why we lost Luke: he was very sick. I understand that he is much better off where he is than what he may have endured here on earth. Although I can comprehend the bigger plan of Luke's life, it doesn't make it easier to accept the fact that Tommy and I lost our child. He is no longer with us. The acute pain of losing him will always be there.

In the blog world, you can find a lot of people just like you: stay-at-home moms, bakers, political junkies, and yes, mothers who have lost a child. I have been fortunate enough to find some amazing moms online who share membership in the same club as I do: those who have lost a baby due to a CHD. I have been able to share my acute pain with them and vice-versa. I have cried with them, vented with them, and have shared my most precious memories of Luke with them. I have found camaraderie with these women and I thank God I have found them.

One thing that I admire about my fellow angel moms is their uncanny ability to be brutally honest on their blogs. I have tried to be as candid as possible on this blog, but many times I have failed. Am I always truthful? Yes. Are there things that I have wanted to say, but haven't had enough courage to do so? Definitely. So, here I am, trying to be Brutally Honest Bernie, praying that I do not offend anyone.

The truth? The truth is that much of this acute pain is due to hurt that I feel has hardened me over the past 2 1/2 years. Don't get me wrong, losing Luke changed me more than I could have ever imagined. But it is what happened after we lost Luke that I believe has hurt me even more. It was the person who would go out of her way not to talk to me so that she wouldn't have to talk about my baby boy. It was the one who told me that the reason she didn't come to his funeral was because it would have been too difficult for her. It was the woman who questioned why we had an open casket and if I saw him take his last breath. It was the priest who didn't call after we lost him, even though I was his employee. It was the person who told my dear friend that I would be alright because I had other children. It was the very pregnant woman smoking at the outlet mall. It was the teenage mother who stabbed her newborn to death so that no one would find out. It was the countless number of babies who are given a death sentence because they are not perfectly formed. It was and continues to be those closest to us who refuse to acknowledge the fact that he lived and died. He lived. He died. I pray that one day they understand that fact and show compassion to us. That they can put aside their self absorption and understand what we face each day: our baby is gone.

Whew! See? Acute emotional pain. I've got it and until I can release it, it will stick with me. I pray that all of you are braver than I am and that you are not holding onto to any acute pain, whether it be physical or emotional. May God bless you all and thank you for letting me vent!