It's My Heart National CHD Conference

What an amazing experience. I will forever be grateful that I was a part of this event. IMH - National in Houston did an incredible job with this Conference. The speakers were amazing, I literally could've listened to them all day. I will attempt to recap the weekend/day below...

Day One - Friday, June 26th - Meet and Greet

Andrea and I arrived in the morning and found our way easily to the Omni Houston Hotel. We had fun taking pictures at the airport, eating lunch and lounging by the pool. We made our way to the Meet and Greet a little early to help with set up. There we met Katy and Pamela, two wonderful women, both involved with IMH - National (which is also the Houston area chapter). We also met Corrie, our Executive Director, Heather, Chapter Development Director, and a slew of other people including parents and CHD survivors. Corrie and Heather are amazing women and I was happy to finally meet them in person. Speaking with the CHD survivors and seeing where they are now was so inspiring, especially since the outlook for them was far worse given the time of their births. After a quick dinner, we went to bed eagerly anticipating the Coference the next day.

Day Two - Saturday, June 27th - Conference

We registered, bought IMH items and took our seats to eat breakfast while waiting for the event to begin. The first speaker was Dr. Heinle, the Vice-Chief at Texas CHildren's Hospital. He took us through the history of pediatric cardiology...from the beginning of the 1900s when everyone thought you couldn't operate on the heart without killing the person to now, with advancements that would amaze and astound you, and everything in between - including covering babies in ice to stop their hearts to complete the first open heart surgeries, parents being used as a bypass machine for their children's surgeries until the bypass machine was perfected, and the first cath being done on a Dr by the Dr himself, only to find himself fired when he published it, then later sharing a Nobel Prize.

Our first breakout was on Advancements in Genetic Research. This is a subject near and dear to me, as Drew quite possibly has a rare Genetic Disorder known as Noonan Syndrome. I had the opportunity to ask questions to the Dr. who presented the material, as did Andrea. It was VERY informative, enligtening and amazing to realize that all this knowledge has only been discovered in the last 15 yrs, with most of it coming in the last five. Andrea and her family might be candidates for some of the research going on, Amelia has AV Canal Defect, which is typically associated with Down's Syndrome...but she doesn't have it. I will keep you all posted on that.

The next main speaker was Dr. Henri Justino, an interventional Cardiologist. He took us through typical catherization procedures used with children and adults who have CHD, including Drew's procedure, the balloon valvuloplasty. It was intriguing to see how a stent is put in place and also how they assist other fields in removing foreign objects. Hopefully advancements in this field will continue to help children avoid invasive procedures, or at least help solve some of the issues so the procedures are less risky to the patient.

We then had a awesome lunch and recovened for another breakout in Family Dynamics. Our speaker was an LCSW who was fantastic! She made the most amazing points about grief and healing. How to not hold ourselves to these ideals we have created for ourselves and instead, walk through the grief of losing those ideals to come to terms with what we are facing and handling it in the best possible way for ourselves, our children and our families. She encouraged us to use our support systems and not just "pull ourselves up by our bootstraps." As I've found out, that doesn't work for long...and when you fall, you need a soft place to land. She is an amazing woman and I know she is an amazing therapist.

We ended the day with snack and a panel discussion with 3 adult survivors of CHD, as well as Corrie's moving story of her son, Noah's legacy. As a parent of a child with CHD it is very important to me to see these adults living their lives, making a difference in the world, and enjoying each and every day doing what they love to do. I pray f0r the same for Drew.

That evening, we went out for drinks and dinner with Corrie and Heather...we had a blast! They are a lot of fun and it was great to get to know them better. We got to see a bit more of Houston by driving to Chick-fil-A on our own (yum-o!) and then, to Ninfas with Corrie and Heather. It looks like a cool little town.

We left on Sunday morning, so we missed out on the Zoo event, but hopefully next year. We had to get home to our babies and hubbies. Bill had a great (and busy) weekend with Drew...and even cleaned up the house and folded laundry for me! Isn't that awesome? I am very blessed.

Beach Babe and National CHD Conference

Last weekend we went to the Grand Rapids area to visit Drew's Grandparents and extended family. We had a BLAST at Grand Haven on Saturday, the weather was great and Drew loved the beach and his first dip in Lake Michigan. He also slept amazingly well at Grandma Brown's. We also made sure to visit lots with "Uncle" Duke, who isn't doing too well these days. The above pics are of Drew enjoying the beach and him with "Uncle" Duke.

This weekend is the National CHD Conference! I am so excited, I can't stand it! I've never been to Texas, so that will be cool. Also, it will be very nice to finally meet the National Directors and hopefully some of the Chapter Officers as well! It seems to be set up to be very educational as well, so I am super stoked! Andrea and I will surely bring back a wealth of information to share with our chapter, friends and families.

I hope everyone is enjoying their summer thus far! Oh, a special note...Tommy is doing much better, as is Lindsay. Lindsay did suffer some brain damage from her cardiac arrest, so they are determining the extent of it. Tommy received a special visitor in Brandon Inge, the 3rd Basemen for the Tigers. He was at the hospital the day of Tommy's transplant and came back specifically to see him. He asked Tommy to sign his arm and it got a lot of press that night at the game against the Cubs! Specifically when Brandon hit a two run homerun and it was dedicated to Tommy. Someone even threw a ball they caught to a friend of the family to take back to him at UofM. What an awesome experience for this special little boy!

Prayers Please

Here I go again, asking for prayers...but children and parents are in need!

Tommy is back in the PICU in a relative amount of pain. There is a problem with his new heart, which is scary and upsetting. Here is what was posted on his carepage by his mom's friend:

This evening Tommy was moved back into the pediatric ICU so doctors could keep a close watch over him. His belly was 30 inches around and causing him extreme discomfort late in the day. They started him on oxygen, milrinone and IV lasix to provide relief. He is currently sleeping peacefully in the ICU with mom and dad by his side.

His biopsy earlier today allowed the doctors to check the pressures in his heart and it was discovered that he has high diastolic (relaxing) pressures on the right side of his heart. According to Dr. Gajarski, there are a couple potential reasons for this problem and they need to determine the exact cause in order to know what to do next. He has said that there is no "magic medicine" for treating high diastolic pressure in the heart. They are waiting for the 2nd set of results from the biopsy that will tell them if Tommy has cellular rejection. They expect to know sometime tomorrow late afternoon. If the results show that he has cellular rejection, this is not ideal, however, they have a treatment protocol. If the results are negative for rejection, then Dr. Gajarski will need to reevaluate treatment options. The options before them are limited, difficult and uncertain. There is simply no clarity at this point.

Overall, Colleen has described the day as painful and confusing for Tommy, and emotional and difficult for all of them.

They are weary and need us to intercede and pray for them. If you pray, I beg you to call on the Lord to bring healing to Tommy and peace for his family.

In addition, a little girl named Lindsay, who also just received a new heart, has been placed on ECMO. ECMO is similar to the bypass machine they use in surgery, and it is NOT ideal to be on this for long. She is a "heart sister" to Tommy, they are both at UofM right now. Here is an excerpt for her mother's blog from yesterday:

Lucky....

This is the word that comes to mind after all of the events that transpired today. Lucky.

First, I would like to clarify what happened and tell you the results of the tests. There is a reason that my husband was with me today. In time of great urgency along with the emotions that go along with, we heard two different things and we were able to clarify once the dust settled a bit. What I am referring to is her heart. It DID stop this morning. However, this was not the issue, it was because of other issues that this happened. The issue was that she aspirated severely. This then lead to her not getting enough oxygen to her brain so she started seizing. Because of the lack of oxygen to her brain, this means that it is also not getting to her heart and that is why her heart stopped. We are thanking the Lord above that doctors and nurses were already at her bedside when this transpired and were able to start compressions immediately. Once they were able to move her to Pod A, they did get a heart beat but had to continue chest compressions because her blood pressure was not adequate and they still didn't have her lines in to medicate to control it. Chest x-ray from earlier was horrible. ECMO will give her a chance to rest for a couple of days and get rid of some of the fluid. One of the other major concerns is her kidneys. She is peeing like crazy so thanking God again that these seem to be functioning properly. Now to the brain. This is of course the biggest concern next to her heart, which is fine by the way!!!!!! Since she is on ECMO which is a lot of machinery to maneuver, they went ahead and just conducted a bedside ultrasound to see if they could see anything alarming. Drum roll please..........nothing alarming what so ever! AMEN!!!!! Now, this still doesn't mean that she doesn't have any problems, it just means that there isn't a reason to take her down to get the head CT right away. We will just have to reconsider if she shows signs of brain related problems. Lindsay does have much better color when we were able to see her again around 2pm. Her head, hands, and feet were definitely pinker. Still blue, but better.

Please keep Lindsay, Tommy, their parents and the staff at UofM in your prayers.

Thank you.

The Stem Cell Debate

Please check out the following site for two well written blogs on the embryonic vs. adult stem cell debate.

http://nathansprayer.com/

A fellow blogger has posted the Dr. Oz footage from Oprah when he stated that he feels adult stem cells are the way for cures to diseases such as Parkinson's. Unfortunately, this went unnoticed by many people and did not receive much press. So, those who still equate stem cells ONLY with embryos may still be in the dark. And, since stem cell research may lead to cures/treatments for CHD as well, this is definitely important to me. Also, as someone who is pro-life, I cannot advocate for embryonic stem cells to be used in the reasearch...as hard as that might be for some people to understand, I just can't. BUT, I am a proponent of umbilical cord blood, umbilical cord stem cells and adult stem cells. And it does appear that adult stem cells make the most sense, and Dr. Oz puts forth a very convincing argument as to why (in my opinion anyway).

Anyway, please check out her site and listen to what Dr. Oz has to say. Also, check out her post on the work her son is doing. It's amazing what science can do these days...and without ethics being called into question!

Rough

Two families are having some really rough days and need our prayers.

First of all, a fellow heart board Mom lost her precious angel, Sam, today. He was 11 months old and had endured quite a lot in those 11 months. The latest was that his feeding tube had perforated his intestines, causing him to become septic. His body could not heal from the damage that was done. His heart became weak from working overtime. His Mommy and Daddy made the painful decision to let him go home to God today. So, while they loved on him, God called him home. It just sucks. There are no other words. This tube was supposed to help him gain strenght by making feedings easier, and there ended up being life threatening complications from it. May God comfort his family.

Secondly, our sweet neighbors could really use some prayers as well. They have two beautiful boys, Lukas and Noah, and yesterday Mommy was walking down the stairs with Noah, slipped and fell, lost her grip on Noah about halfway down the stairs so he fell the remainder of the way on his own with her behind him. He is doing MUCH better today, but it has been very scary. He will remain in the PICU until tomorrow, then hopefully be moved to a step down unit and then, be released home by Tuesday. His poor Mommy...this is something ALL of us have done, either fallen down the stairs holding our kiddos or nearly fallen down the stairs. She's pretty upset though, as any of us would be. So, please say some extra prayers for her...and of course for Noah.

Thank you!

One Year

What a difference a year makes....and he looks almost drunk in the second one, doesn't he??

I just realized I never posted my thoughts on Drew turning one. Maybe that's because I can't quite formulate them into words? I don't know. One year seems to have flown by. Last year at this time, I was the midst of my new mommy haze, breast feeding had already gone to heck, and I was in a serious downward spiral towards PPD. I thought to myself, "I have ruined this child's life." I never once thought about myself, just Drew, and how horrible it was going to be for him with me as his Mom. That should've been my first clue. Another clue, the daily crying...not Drew, me. And another one? How I had about zero patience for Bill and how for the first time in our marriage, I flew totally off the handle during any arguments we had. Why am I copping to all of this now? Well, because in order to understand how Drew's first year has impacted me, you need to know it.

I was not in a good place for much of my maternity leave. Finally, at the end, I felt like I was getting a grip on things...then it was time to go back to work, which was miserable. And not at all fulfilling to me anymore. When Drew was a newborn, I would think "next year at this time, life will be MUCH easier." And it is, to a certain extent, because he's on a schedule now, I know his cues, he responds to me, he's fun and plays games, we read, he laughs and smiles all the time. But, he's also growing into a toddler and, as my friend Ashleigh will attest to, a lot of our day is spent in a battle of wills. A war where I have to choose my battles...with a one year old. I have to sparingly use "no" or else it loses it's impact. My son thinks it's incredibly hilarious to gag himself nearly to the point of puking at a nice restaurant (this is what Ashleigh will attest to). So, there are new challenges.

The good news is, after all this business with his heart, I am much more capable of handling them. I have finally let go of most of my anxiety and worry, and am just able to enjoy my son 95% of the time without those annoying worries creeping in. Last year, I would've panicked about taking him out in the sun, or out by myself, and now, we're on the go all the time. We're planning trips for the summer, he's going to spend the night at my Dad's. I LOVE being his Mom. But then, I always did. And I no longer feel bad for him to be "stuck" with me because I know no one loves him like I do. No one could. They didn't carry him in their womb, they didn't feel him moving before anyone else could, they didn't know in their heart that he was a boy...so sure of it that had he come out a girl, I would've been shocked for many many days. I had bonded with my son, not my daughter. LOL.

To say the least, this past year has been full of many ups, some downs, and always love! Love you my little Drewbie!

Cutie Man Brendan!

Here are some pics of little Brendan and his big sister, Caitlyn! You see what I mean about hair? Look at her's even...it's gorgeous! She is only a few months older than Drew!