Bonding with Sadie

It's CHD Awareness Week, which I have been actively involved with for the past three years. This year, however, I did nothing to prepare, and I have to admit, I've let the CHD Blog run far behind in posts. But it's for a good reason. I've been bonding with the very reason that brought me into the nightmare world of CHD.

Having a baby you can't hold in the early days has a huge impact on your ability to bond. Ask any parent of a premie who's hospitalized a long time, or anyone who has a child with a chronic, life threatening illness in the early days. Sadie missed out on those early caresses - I couldn't touch her for more than a week beyond brushing a fingertip across her hair without her heart racing. I didn't hold her until she was almost three weeks old. She could not tolerate touch, really, for months, unless she was bundled tightly to minimize it, and bounced to draw her attention away from the fact she was being held. It's difficult to bond under those circumstances.

And that's part of the reason I have been such a 'warrior' about Congenital Heart Defect Awareness. I felt so robbed. If she had been diagnosed, as she SHOULD HAVE been prior to birth, I wouldn't have lost as many days as she stabilized. I have felt that the lack of knowledge, the lack of simple tests, had cost me the bond with my baby. And I was pissed about it. And when I get pissed, I take action to make changes. I don't know what caused this to be my genetic makeup, but it's what happens when I'm faced with something I can't understand, or I think is wrong, or I feel I can make better.

I always felt so awful about not having that special bond with Sadie that I had with Katie in her early years. I craved those moments I'd had with Katie as a newborn - when she'd gaze up from nursing into my eyes and just stare. How she'd snuggle into me and fall fast asleep. How she smiled in those early weeks. With Sadie, it just didn't happen. Every day was a battle. I was, to be honest, disappointed. Let down. Sad.

That's not to say I don't love Sadie more than I can express. I love her so very, very much - coming so close to losing someone makes you realize how much you want them to be in your life. I would content myself with watching her sleep (when she did). Time marched on, and month by month she became a little easier to deal with - allowing me to touch her without crying. Eventually making eye contact. Hugging. Kissing. She became a fairly normal toddler - full of moxy, highly temperamental, but funny and sweet. Still, we didn't have "that" bond.

All of a sudden, three and a half years later, it has finally happened. In fact, I can almost name the moment. We went out on our first mommy-daughter date to the movies a month or two ago, and we sat. We chatted. And the communication began to grow. Now she's attached to my hip (literally, she's sitting her on the couch beside me, on my hip as I type), snuggling constantly and telling me how much she loves me a hundred times a day. And each time I tear up a little bit, so thankful for these moments that were so long in coming.

As for CHD Awareness, I will continue to promote the need for better testing - simple tests can save lives, and maybe even just one mom can have more of a bond with their baby than I was able to have. So I'll champion it. But I won't be putting the hours into it this year. It is time for me to step back and be thankful. To hang up the gloves I've had to keep on to fight for so long for Sadie, and just enjoy her and revel in my new found bond.

Double Guessing Yourself

It's funny the timing of things...

When my kids get sick, I have a tough time gauging how really sick they are. If there's a fever, I usually take them into their pediatrician for a look. I often feel like a hypochondriac. What can I say, I've developed a distrust of the medical community in general, which has been combined with my tendancy to worry. With reason (Sadie's many medical mishaps and oversights, Jason's recent brush with death), I know, but a worrier none the less.

There's a flip side to that. Being a rational person and recognizing the current stress levels and prior experience, I often discount my gut and ignore symptoms until situations escalate further than they should.

The past 6-8 weeks is a great example of what I'm talking about. The experience at the hospital with Jason left me feeling I couldn't trust the simple diagnosis any longer. I ended up taking Sadie in a few days after his initial visit - to the ER no less - because she had 5 or so similar symptoms to his presenting illness. Her pulse ox then was around 94. They said it was likely because she has a heart defect and had been sick. I dismissed the episode of being one of neurosis and exhaustion.

The kicker is, Sadie hasn't really been well since that time. She's been OK, still full of spunk, but not quite at full steam. She's had several episodes of labored breathing, but in conjunction with a cold, congestion or a nasty cough. She just hasn't seemed to shake it. I've noted three seperate times that her nailbeds were a bit bluish. I chalked it up to her coughing and congestion. I thought perhaps it was pneumonia, it wasn't. Bronchitis, nope. I had lots of ideas, but never once allowed myself to think about the heart as being part of the issue. Yet, inside, I've been in turmoil, worried that something bigger is being missed. I tell myself it's because I'm surrounded by CHD-related things right now, and over vigilent with her. T

Today was visit #6 in 3 weeks for Sadie to the doctor. We saw one of our favorites, and she took a lot of time, checking her pulse ox, listening to her heart and lung function, asking the right questions. She felt Sadie was, indeed, experiencing periods of cyanosis ("blue" syndrome - when the body doesn't oxygenate as well as it should. Which shouldn't be happening based on her reports from the cardiologist. (Guess who's switching cardiologists after we're over this hump?)

An uneducated guess is that perhaps Sadie's pulmonary hypertension was never really resolved as her cardiologist told us over two years ago (without checking for further symptoms no less). I always ask for her doctors to check at her pulse ox at well visits (it's a simple, fast and "free" test), and usually it's 98-100, but when she's ill, it easily drops to lower 90s. If she's really sick, it's in the upper 80s.

I know it's nothing "serious" compared to the many challenges some of my friends face. I feel silly, to be honest, when I worry about Sadie's heart. My heart friends have children who on a GOOD day are in the upper 80s for sats. So I have a hard time feeling urgency with my child, who is often called "fixed" in the CHD community.

I feel like this is a bit of a push from above. A reminder that I'm on the right track in working to create some change for CHD patients and their families. And an even more poignant reminder to trust my instincts as a parent. To calm the brain, and let the gut do the talking when it comes to their healthcare.

Side note - I really missed Lobby Day today!

The Operation Sadie Had

OK, two posts in one night, moments apart. But I just came across this on a fellow CHD mom's blog and had to post. This is the surgery Sadie had in order to survive. Hers was not as simple as the Arterial Switch Sadie underwent, as in addition to TGA she also had two holes in her heart (ASD and VSD) to repair, plus complications with lung issues before and after.

Warning: NOT for the faint of heart, the squeamish or those that freak out over surgery videos (That means you, Mom!). This is graphic.

7 For 7: 7 CHD Stories

Today's 7 For 7, features just a few of the stories that have been shared with me by my newfound CHD friends, through this blog, or online. You will not stand up from reading this post without your heart feeling lighter!

Cynthia's Story. I am a 60 year old survivor of Tetralogy of Fallot. I had the Blalock-Taussig Shunt when I was 3 and a total correction at 15 years. In 2004, I had to have my pulmonary valve replaced. In addition, an aneurysm had formed in the teflon that was used to expand the pulmonary artery during the total correction. This was also repaired in 2004.

Throughout my life, I've always worked to overcome shortness of breath, becoming tired, and all of the other symptoms that go along with this defect. I realize that I push myself further than anyone else pushes me.

I have discovered an organization, the Adult Congential Heart Association, that I would like to share with you. People like me who have lived longer than anyone expected them to live can present a problem to doctors. We're sort of leading the way for the children who are just being born with CHD. By the time some of these children reach my age, I hope that the things that are learned now in managing my health and the health of other adults will be standard procedure for the management of their health.

Parents, prayers are answered every day. As you all have indicated, your children are already a blessing and, in many ways, are blessed. I would not have lived if Dr. Blalock and Mr. Vivian Thomas had not worked diligently for years to develop the surgery that saved my life. Others are working equally as hard to find ways to save the lives of children born today and tomorrow. My thoughts and prayers are with all of you and all of the children as you move through life.

Christy H's Story. At 16 weeks pregnant we learned through an ultrasound that our daughter had lung issues. At 23 weeks, we were shocked and devastated to learn of her heart defects. Between the two, she was given a 5% chance of survival. Despite the odds, my daughter, Harlie, was born on September 25, 2006.

Harlie has a CHD called Congenitally Corrected TGA and three other heart defects that complicated matters and forced the surgeon to do a three operation “repair” to re-plumb her circulation. I have been told that her heart will last her about 30+ years and that after that we will be looking at a transplant.

In addition to her heart defects, Harlie also has Goldenhar Syndrome (an asymmetrical craniofacial syndrome). She has an underdeveloped jaw and missing bones, low forward set ears, with a dysmorphic left ear and no canal, many vertebral anomalies, left eye anomalies, misshapen skull, anoperineal fistula, and a lung malformation that required the removal of most of her right lung.

Harlie is now 16 months old and has just started to crawl. She has a 20-word vocabulary in sign language. She breathes through a tube in her throat, called a trach. She eats through a tube that was surgically placed in her stomach. She’s had seven surgeries and has spent over four months in hospitals and she’s just getting started.

Despite all of this, Harlie is amazing! She’s smart and happy and we think that she’s quite cute. She has such an agreeable personality and just seems to go with the flow, whether she’s at home or in the hospital. We are very thankful that we have her.

Harlie's heart, lung, airway and feeding issues are pretty overwhelming. But I try to focus on what’s good and be thankful for those things. I try very hard not to think too much about her heart or her lungs. I see children running and playing everyday and wonder if Harlie will be able to do that. I try very hard not to think about what it will be like when she realizes that she looks different. Or the first time she comes home crying because someone made fun of her. We are a very vain society, and that will make parenting her much more challenging.

But worrying about all that is a waste of energy – energy I need to just get through each day. I do my best. I take very good care of her. I make all the necessary appointments with her 14+ doctors, I got numerous opinions until I found the right doctors with the right plans for her. I give her all her medications as prescribed. I’ve learned CPR and she wears an oxygen and heart rate monitor when she sleeps. But, in the end, despite all my efforts, I cannot control how her heart functions. I just hope that it beats like it’s supposed to and that it doesn’t stop. I hope that she never gets a plug in her trach that blocks her ability to breathe. I hope that she never pulls the trach out (again! – yes that was a close call). I hope I never have to call 911 again. I hope that she will know that her care was never too much for me and that she is worth whatever I have to do to keep her safe and sound. I hope that I can continue to be the strong mother I need to be for her. And I hope that she will know that she has made me the happiest mom on the planet.

Sharon's Story. Saving the life of infants us everyday work for Dr. Karen S. Rhueban, a Pediatric Cardiologist at University of Virginia Hospital. She was interrupted from an interview to perform an emergency cardiac catheturization on a newborn 4 1/2 pound twin whose blue-tinged skin indicated her blood was not circulating properly to receive oxygen.

In the cardiac catheturization laboratory, Dr. Rheuban inserted a plastic tube in the baby's leg and laced it through blood vessels to the heart to record circulation of the blood and make an accurate cardiac diagnosis. The end of the tubing was blown into a nickel-sized balloon and passed through a hole in the upper chamber of the baby's heart to allow blood to circulate. Known as a balloon atrial septostomy, this procedure saved her life. The baby had to have open-heart surgery at 9 months old in order to survive.

Today, Sharon is 23, and a marine wife. She leads a normal life with a daughter of her own, who has a clean bill of health. Two adults have told me in the last week that they had never met any one else with CHD. Sharon is one of them!

Karen's Story. As I lay on the exam table and the ultra sound tech squeezes some warm gel on my expanding belly, I look over at my two daughters who are 4 and 7 and squeeze my husband’s hand. We are all eager to find out the sex of our newest addition to the family. With two girls already, we were eager to find out if Daddy will get a little boy. The baby is uncooperative. The tech is unable to tell the sex. Our excitement elevates. The tech steps out to get the doctor. Soon the doctor comes back. He looks at the screen for a long time. I start to get a sick feeling in my stomach. I squeeze my husband’s hand harder. The sweat is building between our tightly gripped hands. His panic is beginning to flow to me threw his hand as though our bodies were connected. The doctor speaks…. “This is not good. This is bad.” I truly feel like I am going to faint. I look over at my girls who have started to look at a Dr Seuss book and have forgotten about what we are there for. I think to myself that they understand “This is bad.” Get them out of here. I don’t want them to see me cry. Oh my God! Oh my God! The tech takes my daughters out of the room to the waiting room. The doctor tells us that the baby is missing part of its heart. Missing half it’s heart! What does this mean? Is the baby going to be able to live?

We were sitting in the doctor’s office and the cardiologist began explaining everything. Our baby has Hypoplastic Left Heart Syndrome. To this day, I don’t remember that doctor giving us much, if any, hope. But I don’t remember much from that conversation. The one thing I do remember was we were told to think about aborting the baby. After many tears and prayers we decided to continue with the pregnancy and do everything we could for our baby.

Jameson was born on October 13, 2006. When she was four (4) days old, she had her first open heart surgery. The next couple of months were extremely difficult. Jameson was stable but, by no means, was she a healthy new born. She struggled to eat and thrive. She had her second open-heart surgery at 4 1/2 months. The recovery was much quicker this time. The best part was she was crying, crying because she was hungry and wanted to eat! Her third, and hopefully final surgery will be in April.

Every month Jameson has grown stronger. She is one now and is such a wonderful baby. She sometimes gets winded when she is crawling or moving around but other than that, the scar that is hidden under her shirt is the only proof of what this little girl has been through.

Parents deserve to believe their child has a chance. Had we followed the doctor’s advice we would not have our beautiful “Little Champion.”

Misty's Story. My CHD story begins on New Year’s Day, 2005 when I found out I was pregnant with my 3^rd child. My pregnancy was pretty normal. All of my ultrasounds were fine and there was no cause for concern, so we thought. Sydney was born on August 24, 2005. Her APGAR scores were 9 and 9. Everything looked good until the pediatrician came in and checked her out and heard a murmur that was “slightly louder than what we like to hear” and called in a pediatric cardiologist, Dr. Albrecht.

At 4:30 pm that afternoon, Dr. Albrecht came into my room with a nurse. I was there by myself taking a nap and waiting for my newest little girl to be able to come to my room and get to hold her. I’ll never forget what he said. “Your daughter has a problem with one of the valves in her heart and I have called a transport team from UVA Medical Center to come and pick her up and transport her there. She will have surgery tomorrow morning.” Sydney has Aortic Stenosis (AS). Dr. Albrecht advised me that her Aortic Valve was a bi-cuspid, instead of a tri-cuspid, valve and was barely functioning and letting very little blood out of the valve to the Aorta. After he went over everything, he sent the nurse to bring Sydney to my room so I could say my “hello’s and goodbye’s”. My husband called his parents to go pick up our other 2 children and bring them to the hospital to meet their new little sister before they took her an hour away to prepare her for the surgery the following morning.

The next morning my husband called to let me know that they were getting ready to take her back and that she had so many tubes and wires coming out of her that the only place that you could touch her was on her head. At that point, he started to break down, again, and I began falling apart, again. Two hours into her procedure, we received the news that everything went well, she had had two blood transfusions, and she was going to be ok.

When I was finally released from the hospital and able to go see my daughter two days after her birth, I found her in her little bed with an intubation tube and many tubes and wires attached to her. Since that day was my birthday, Steve’s parents brought our two older children up to the hospital to see their sister. I didn’t want them to see her with all of the tubes and wires, but someone brought them back before I could say anything. What was amazing was that when she heard them start talking, her heart rate stabilized, her respiratory rate normalized and her blood pressure returned to a normal state. It was incredible.

Today my daughter looks like a normal 23 month old, but she is not a normal little girl. There are things that she will have to go through that ‘normal kids’ won’t have to do. Besides the future surgery(ies) to open and eventually replace her aortic valve, she won’t be able to do some sports that she may want to do and she will, most likely, have to take medicine every day of her life. Her heart will never be normal.

Joshua's Story. Joshua is an active 4 year old. He was born in June of 2003 with hypoplastic left heart syndrome, a rare and fatal defect, unless treated. Basically, he was missing his left ventricle and his aorta was very narrow. Parents of children with this defect are given three options: they can take their child home to die, they can try for a heart transplant in hopes that a heart will become available soon enough, or their child can undergo three surgeries that will reroute the blood so that the child can survive. Jodi and Mark, Joshua's parents, opted for the surgeries.

Joshua developed severe blood infections after his first surgery, but miraculously pulled through, and his parents were able to bring him home almost two months later. His second open-heart surgery took place when he was 5 ½ months old, and he went home five days afterwards. He had his third surgery, the Fontan, when he was three. This surgery was particularly hard on the family as they had had over two more years to learn to love Joshua, and they knew there was a possibility he might not come home. However, Joshua also made it through this surgery with a few post-surgery complications called pleural effusions. Though it kept him in the hospital longer than anticipated, Joshua did fully recover.

We do not know what is in Joshua's future. The doctors cannot "fix" his heart. We are hoping that Joshua will not need any other procedures for a long time. In the meantime, he has fun playing with his brothers and making his parents laugh. Every day with him is a blessing.


Christy D' s Story. My husband were excited when we found out I was pregnant with my second child. Then our world came crumbling down at our 21 week ultrasound; Steve and I were told our little baby girl had a severe and life threatening heart condition. Instead of joy, we were expecting, our hearts were filled with pain, fear and grief. The baby was diagnosed with Tricuspid Valve Atresia (TA)---meaning her tricuspid valve did not form. Without her tricuspid value, her blood was unable to flow into her right ventricle, enabling growth; meaning she has a 3-chambered heart.

Sydney was born on December 4th, 2006 and had surgery 8 days later. Without this surgery, which has its own risks, she would not survive. The recovery was a roller coaster ride. Sydney developed seizures 1-2 days post-op, which is a risk to having open heart surgery. Her O2 sats, heart rates, and blood pressures were all over the place. She had so many tubes and lines in her, that the nurses had run out of places to put them. After many prayers and medical assistance, we got to take Sydney home just 3 weeks later, just in time for Christmas. What a great gift!!!

At 4 months of age, Sydney had her 2nd surgery. Just remembering Sydney going through surgery last time, made us sick with grief. We knew she was in the best hands, but there are never any guarantees when it comes to surgery. Thanks to all the Angels above, the 2nd surgery was a breeze compared to the first surgery. After the surgery, Sydney's life has improved in a dramatic way. At approximately 2 ½ years of age, Sydney will have her 3rd surgery, as long as everything continues to progress as planned.

Sydney, despite her medical problems, amazes me. She is full of love and life. She always has a smile, no matter what is going on. I thank God for her every day, and despite the fact it is hard being a “heart parent”, there is NEVER a day, or a moment, I would change it, if it meant not having Sydney in our lives.

Why this is So Important

We all know that life is fragile, and that there are no guarantees about how long we, or our loved ones, get to be here. But the families of and survivors of CHD, are exponentially more aware of this, and of every seemingly “tiny” health matter.

Every germ is the enemy, every virus has the potential to wreck havoc on CHD patients’ broken hearts. We stock up on large bottles of Purel, are on constant alert at playdates for signs of sniffy noses and stay away from indoor public play areas. Because when our kids get sick, the child's heart does as well, and their hearts are often already struggling.

Today, I received news from Josie (who wrote yesterday's entry) that her daughter was admitted to the hospital last night with RSV. She's improving since her initial, scary admission, but there's still concern over the impact the virus could have upon her heart. It’s a scary situation and one that can only be helped by skilled medical practitioners, positive energy and prayers.

Unfortunately, Josie and her family are not the only ones struggling. Today I talked to my friend Karen, whose daughter has Hypoplastic Left Heart Syndrome (HLHS), meaning her daughter’s heart is missing most of the left ventricle. She told me that she dreads the question that most people ask her – “Is there a fix for your daughter’s heart?” Here’s what Karen says...

Unfortunately my daughter's heart will never be "fixed." She has half a heart. She has been "rewired" to live on one ventricle. We will live in constant fear that her heart will peeter out. We will live in constant fear that she will get an infection that her heart cannot handle. We realize that it is a good probability that she will need additional surgeries and /or a heart transplant in her future. So, no, she is not fixed. There is not a fix for Hypoplastic Left Heart Syndrome.

One can only imagine her heart break every time she has to answer this question for the well-meaning stranger who asks it. Or how much she hates that it.

What is the point of sharing these two stories with you? The point is, that because the public is not aware of CHD, it is also not aware of the pain our families face. Of the fears. Of the overwhelming desire for “normalcy” (whatever that may be) and the inability to gain it for our children. Of the yearning we have for a "fix" that has not yet been discovered.

Because the public does not know much about CHD, there is not enough of a demand to allocate the funds into the research. Through knowledge, we can find ways to raise interest, to raise awareness, to raise funds for research that will find earlier diagnoses, fixes and cures, medications and therapies. I… WE (the parents of children with CHD)… hope you will join us as we work to spread awareness to our peers, our legislators, our corporations, our friends.

The Miracle of the Heart

A fellow "heart" family in the Richmond area is also keeping a daily blog focusing on CHD awareness this month. One of their entries was especially interesting to me, so I asked if I could copy it here. Here's what Josie, who also has a daughter with TGA, wrote...

When you stop to think about the process of fetal development, really think about what is happening every day, it's absolutely breath-taking. The heart is one of the very first organs to form, in fact, it begins to beat often before the mother even knows that she's pregnant, within 21 days of conception. Congenital heart defects thus occur in the first days and weeks of existence; by the time the heart begins beating, most structural anomalies already exist. Depending on the particular defect, that may only be the beginning.

Although the structures of the heart exist from the earliest days, the heart itself continues normal development throughout the pregnancy. The flow of blood through the heart furthers growth and development of the various structures. When there is a structural anomaly, the blood may follow an unusual path through the heart and thus exacerbate the defect. Other defects result not from structural problems, like our daughter's, but rather from problems with the valves in between each section of the heart. Valves are critical to normal cardiac functioning because they prevent the backwards flow of blood as the heart contracts to pump blood to the body and the lungs. In order to function properly and efficiently, the flaps must be thin and pliable and should open completely and close completely. When they don't work, either because they are too small and restrict the flow of blood through the valves, or because they are weak and leaky, the development of the fetal heart may be seriously impacted. Problematic valves may prevent entire chambers of the heart from growing and developing.

But I digress. The point of this post was to explain that congenital heart abnormalities exist from the earliest days of the pregnancy. And no one knows why. No one knows what triggers the incorrect formation or when exactly development goes awry. Sometimes, although very rarely, there is a genetic component. The vast majority of congenital heart defects have an unknown cause and therefore we don't know how to prevent them. Seriously, when you stop to think about it, a normal heart is really quite amazing!

Yes we can!

I am not a big fan of politics. In fact, it's fair to say I HATE politics. But while I may or may not share his political views or view the speeches of the candidates as rhetoric, the recent speech by Obama in New Hampshire moved me. Will.i.am of Black Eyed Peas fame turned that speech into the inspiring and moving video above. On the website he created to feature this video (dipdive.com) Will.i.am wrote:

When you are truly inspired..
magic happens...
incredible things happen...
love happens..
(and with that combination)

Inspiration breeds change...

What does this have to do with CHD Awareness? Well, to be honest, this dive into the CHD world has been a tough one for me. Though I jumped onto the idea of doing a 29-day blog-a-thon, I've found that it's hard for me to say what I really want to say. Some of it may offend. Some of it is too hard to write. Some of it is very personal. But it is a message that needs to get out to the public. At a mass level.

To me this video was a reminder... that through inspiration, change is acquired. I've been inspired by the other CHD moms who are tackling this issue by my side. And by the surgeons and cardiologists who are at this very moment finding new paths of treatment, new ways to save lives.

Take a look at this video created by a mom from the local Mended Little Hearts group . (Note Sadie's beautiful mug shots).

After gaining this inspiration, I can't help but feel a spark of hope, and an emblazoned desire to create change. Creating awareness is a HUGE challenge, but messages like these drive me to take action. Can we inspire others through our small movement? Can we cultivate this plight for awareness, and in doing so, save lives? YES WE CAN.

Overwhelmed

Day 1 of my personal CHD adventure in advocacy, and I'm overwhelmed. In the last 48 hours I've received about 40+ emails from parents of CHD children and some of which have lost children to these series of defects. I had planned a nice commentary for my first blog of this month long venture, but can't seem to find it in myself to finish it today. So, I'll keep this simple and share with you some of the facts from the Children's Heart Foundation. I have not had time to verify all the facts they list, but from the research I've done in the last week, most seem to be right on target.

• CHDs are America’s number one birth defect, affecting nearly one out of every 100 births, or 40,000 babies a year.
• CHDs are responsible for one third of all birth defect related deaths, making CHD the number one cause of birth defect related deaths.
• More than 91,000 life years are lost each year in the United States because of CHDs.
• More than 50 percent of all children born with CHD will require a least one invasive surgery in their lifetime. Twenty percent of these children will not survive past their first year of life!
• The cost for surgery alone exceeds $2.2 billion a year!
• CHD research is grossly under funded. Pediatric cancer research is five times higher than CHD research although twice as many children die from CHD each year in the United States than from all forms of childhood cancer combined.
• Research has already made a difference in the lives of thousands of children and their families. In the last decade, death rates for CHDs have declined by almost 30 percent because of the advances made through research. As more children's heart abnormalities are treated, research is needed to meet the needs of CHD patients as they reach adulthood.
  

There, the facts are laid out. Next up... coping with a tantrum thrower, ways that CHD has changed my perspective on life and what you can do to make a difference for a child or family facing CHD.

Wow! What a response!

Thanks to everyone who has responded and is interested in spreading the word for CHD Awareness Week! Because I've had some media interaction and don't want to share my personal blog with the world (yes, yes, I know... why do I post in public then?), I've created a sister blog, LearnAboutCHD, to chronicle the events. I've also come up with a dandy little campaign called "7 for 7" that everyone is invited to participate in!

In addition to the mad blog marathon I'll be running this month, on the 7 days of CHD Awareness Week (Feb. 7-14), I and many other CHD families, friends and supporters will be posting lists of 7. While most of us will do seven things related to CHD, you're welcome to use your imagination and go wild with your 7 lists of 7. My only request in all of this? Please put a link in the entry to one of the many CHD Information/Support sites.

Feel free to use the logo I cooked up, or come up (above) with something a bit more exciting of your own. I'll be linking mine to the new sister site, or when posted there, to CHIN (www.tchin.org), as they seem to have the most information and links of the sites I have seen relating to Congenital Heart Defects. For those of you in Central Virginia, there is a great support group here called Mended Little Hearts that would benefit from informing Richmond area residents about their programs.

And we're off...!!

Going Grassroots for CHD

Last week I discovered that February 7-14 has been designated Congenital Heart Defect (CHD) Awareness week across the globe. Who knew? Obviously, this campaign doesn't have the impact factor other more "popular" campaigns have.

Sadie barely survived her CHD - partly because of the type of defect she had, but MOSTLY because her CHD was not caught in utero. For 17 months I've been angry - angry with my OB for never telling me CHD existed. Angry with the precious moments that were lost that I can never recover. Angry that her warning signs were ignored. I decided this past week that enough is enough with the anger - I'm going to take that energy and turn it into positive action. So, my dear reader, you get stuck bearing the brunt of my latest climb onto a soapbox.

For the 29 days of February, (it HAD to be leap year that I decided to take this on) I'm making it my goal to post to this blog every day, each with some sort of reference to CHD (though not always the subject). From the 7-14th, I'll post only lists of 7 relating to CHD. Let's see how creative I can get. There will be some juicy stuff in there. Just you wait.

You can join this grassroots crusade, too. Find some facts on the CHD Information Network and share them in an email or on your blog. Add an image promoting CHD Awareness (see the two here!) and a link to your MySpace page, LinkedIn page, FaceBook, blog or wherever you lurk in cyberspace. Better yet, join me in a blog-a-thon from Feb 7-14 for Awareness Week. C'mon over and jump onto the CHD Awareness bandwagon, it'll be fun times for all!

So Lucky

I've made quite a few friends through the various outlets I've found for parents of CHD kids, one of which posts frequent updates of her daughter, who suffers the same defect (and more) that Sadie has. While she is in a much more serious situation with her child than I am with Sadie, I felt that her post read a portion of my heart, a part that I'm unable to verbalize as eloquently (if at all). I'm posting a portion here:

I can’t describe what it’s like to be a part of this new world. Things that I never once thought about, are a part of my daily life now. As parents – no matter how old your children are – you never want to think about losing them. Unfortunately, when given the very special honor of raising a medically fragile child – those thoughts never go away. They are literally in my mind all the time – lurking in the background on a good day, and more obvious on the bad days. We have certainly had more close calls than I care to remember!

So many parents and children I have read about and couldn’t help but cry – even though I have never met them and never will. Even though I have not lost a child – my imagination of those feelings are very real. Especially when these parents have worked SO hard to do everything to keep their children alive and healthy. It just seems so unfair!

But one thing I’ve started to notice more and more – is that the ones that have been honored to raise these special children feel so lucky, so blessed. How can that be? We deserve to feel cheated and bitter and angry! Well, okay, we do feel those feelings. But, more than that, we feel blessed and grateful. I find that so amazing. Those that have never spent one night in the hospital with a child recovering from life-saving surgery should feel like that. Those that have never had to learn about a rare medical condition, surgery, birth defect, how to be a nurse for their child, etc. should feel like the luckiest people on earth.

I am incredibly thankful. (Even though I am very bummed that the Packers lost tonight.) Every single day completely amazes me. Now isn’t that something?

Reality Check

I have managed to convince myself these days that Sadie is a normal baby. After all, she's doing great, finally putting on weight, acting "normal"... I even find myself forgetting at times the hell we went through those first few months. Then I get a reality check.

Today was Sadie's cardiology appointment. Everything was perfect - her heart is functioning as expected, the valves are great, the pulmonary artery isn't stretched to far, the coronary arteries aren't kinked. She's 18 lbs 3 ozs and 27.75 inches now, so right on target. So why am I feeling so blue? He said almost good things today, though he did say that he was surprised that she was so alert - he had expected a bit of a zombie after all of the problems we had with drug addiction/withdrawal.

I guess it just all kind of hits when you go back to the cardiologists office. A whirlwind of memories comes flooding back. Until faced with the man who gave me the news that scary first night of Sadie's life, I can pretend it's a bad dream. Dr. Albrecht (her cardiologist) is wonderful - I think the world of him, and can never thank him enough for saving her life.

I guess my emotions really hit when our conversation about what to expect from this point out. He only wants to see her annually this year. Any time we want to sign her up for a new sport/activity, we should call, order a stress test and EKG and clear it first. Although they're lifting the recommendation for most "heart" kids to get antibiotics before surgical and dental procedures, he still wants her to do it, given her history. But the thing that got me was when we were chatting after the visit. He was telling me about his best friend's son, who had TGA as well. He was one of the first to undergo the "switch" operation Sadie had, and is 21 and active (a lacrosse player in college) today. Albrecht was telling me that, hopefully, Sadie will be able to be just as active, and "maybe even live long enough and be well enough to have children..." but that he couldn't tell me more than that. They don't know how long this surgery will "keep" or what is in store. For all we know, at 30 the stress on the pulmonary vein may be too much. Many kids have had complications, and the numbers just aren't in yet to know what odds are.

Not that I'm trying to be pessimistic - he was telling me this to try to encourage me. He also said that for all we know, she may live longer than any of us, and be more healthy. It should have been a comfort, but instead, it scared the heck out of me. I've been able to hold on this long by just thinking about today, the next year or two, etc. I haven't really thought about her future too much, or if there would be long-term complications. It just reminded me that although we've moved on, she's doing well and we're back to the "norm," she will never be truly "normal."

Six Months Today!

Happy 1/2 birthday, Sadie!

It's hard to believe that six months have passed since you blessed our lives with your presence. You bring so much joy into my life, and to everyone you meet. We are so lucky to have you with us, and we love you!

Our first really good week!

I haven't been posting as much lately, and it's great to say that I really don't have too much to report for a change!

This week was chock full of doctors appointments for the girls. Sadie had to have a few shots on Monday. They give her a special booster called Synagis (for the bargain price of $100/shot AFTER insurance) every month to help protect her from RSV (a respiratory virus). Plus she had to update her HepB shots, since we were behind due to her prolonged hospital stay. And a blood screening was done since the one that was done in the hospital was invalid because she'd recently received a transfusion. So she was pretty cranky the following day, but is now up-to-date and where she should be for an almost 3-month old. Yay!

Katie had to do a VCUG and sonagram this week to make sure that her recent urinary tract infections weren't due to reflux of the urine, problems with her kidneys, etc. The tests were awful and she was scared to death. They had to do a catheter in, fill her bladder through the catheter with barium and watch it go in and out a couple of times. She's got a serious phobia of hospitals (gee, I wonder why?!) and was shaking like a leaf, but was brave and did very well. I do NOT want to have to watch my girls cry though any more tests. I know they're necessary, but there's been way too many of them, and I'm getting weaker emotionally with each one. It was everything in me not to cry when Katie was looking at me screaming as they put the catheter in. Poor baby. Thankfully everything looks good, so we're in the clear on that one. It was nice to get positive test results for a change.

Thursday was Sadie's cardiologist appointment, and they did an echocardiogram to make sure the anatomy of the heart and blood flow are working ok. The cardiologist (Dr. Albrecht) was wonderful, and Sadie was a perfect angel during the exam. She now weighs 11 lbs 2 ozs, which puts her in the 10th percentile, so they're a little worried about her weight and growth (she's 22.5 inches), but not so much so that anything needs to be done. The cardiologist is following up with Sadie's GI, though, because he wants further follow up regarding the lower esophageal slow motility problem at a sooner date than she had thought was necessary. So we'll see what happens there. She's on Prilosec, and it seems to have helped a lot with the spitup and crankiness, and I've been avoiding all dairy products, which also helps. So I'm not sure why the weight isn't going on as fast as it was last month.

The best news of all is that Sadie has now successfully completed her methadone wean! We took her off last Saturday, and she's made it all week long with very few withdrawal signs. Day 3 was kind of tough, but nothing we hadn't seen before - just a lot of crying, cold sweats, stuff like that. We've got a whole new baby on our hands - she's becoming so much more alert, even tempered (well, as even as I think she'll get - some of this is just personality) and so darn cute I can't stand it. I'll try to post new pictures later this weekend!

Good report from GI and Ped Drs

I only have a brief second but wanted to update. Sadie had her GI appt yesterday and not much came of it. The GI dr seems to think that the methadone/long-term use of narcotics is what is affecting the slow motility in her lower esophagus. She's not going to do anything further until Sadie is off the methadone for good. If we don't see signs of improvement once she's weaned again, then she suggested seeing a neurologist combined with a something-scopy (sorry, I forget the name) that is basically a camera down her esophagus. But I"m not going to worry about it for now. For the time being, she's on Pepcid to help with the reflux, and she says we should see some improvement in a few days.

Meanwhile, we're down to two doses a day on the methadone, so I've got a very cranky girl again.

Today was her 2 month check-up, and she's 10 lbs 5 ozs, putting her in the 50th percentile for weight. She's in the 25th percentile for length and head circumference.

That's the update. She's crying a lot tonight - probably from the 4 shots, so no more time to write.

Results from the UGI... not good.

Sadie had her Upper GI test done this morning (a test in which she had to swallow Barium and have an active x-ray taken of it's movement through the course of her GI tract). The pediatrician had ordered the test to see if she has reflux, since she's been spitting up a bit lately. The spit up has gotten to be worse and worse in the past week.

So, to the hospital we went... again. They strapped her onto a board and had to pull her arms over her head and tape her down for the test to be done. She was a trooper and cried only a little, and even took all of the barium through bottle feeding (which she normally hates). A doctor was present to read the video as it happened. He told me that there was little reflux, but that there was a problem with her esophagus. The food was collecting at the bottom of the esophagus and was not going into the stomach as quickly as it should. He said he would not speculate as to the cause of the problem, nor its treatment. That's when the first red flag went up.

The pediatrician finally called at 7:00 tonight with the results. She said that there was a problem with the mobility of the food through the esophagus, and that she didn't know the cause. I asked point-blank if she's seen this before (hoping she'd say it was common with kids), and she said she had not. The normal wait-time in this are to see a pediatric gastroentrologist is 3 months, which won't do - she's getting us in as soon as possible.

So, I've started searching the internet to try to figure out what the possibilities could be. None of the things I've come across are exactly wonderful. I'm scared. Many mention (ok, most) surgery. Jason told me not to get too worried yet, but I know what I saw in the test today, and I know how I was treated. The calm words, but no reassurance. I've been there and done that before.

I have to wait until Friday to find out when our GI appointment is. I hate waiting.

The worst is, in what I've read tongiht on the web, almost all espophageal abnormalities cause chest pain, and often back, shoulder and neck pain. So Sadie is likely to still be hurting. Could that be the underlying cause of all the crying? I think it's highly likely. She cried a ton again this evening - from about 4;30 - 9:30. I feel so helpless to relieve her discomfort/pain/whatever it is.

I just don't get it. Why does one little person have to go through so much? I really hope I'm overreacting and this is minor, but my mommy-senses are tingling again. Neither doctor I talked to today had answers, and we're being referred to a specialist with urgency. This is not good, and I just know it.

Normal?!

I'm almost scared to write anything about the last few days because I don't want to jinx it... things have been great. Sadie feels so much better, and is a pretty happy baby now. She still fusses, but nothing like before. I can handle a few hours of cranky every day, it seems like bliss. She now lets me hold her, carress her hair - she even tolerated my singing her to sleep tonight.

Last week (well, really the whole time before now) I was afraid to touch her too much because it upset her. She screamed through most interaction. She hated baths. She wanted nothign to do with me unless I was feeding her. So this is a very welcome change. I feel like I have a baby again! I just hope this time the wean will work and we can get past this methadone thing.

She's now on a 6 week gradual wean, so we've got a while to go. However, she's not as drugged as she was before. She's very lucid, smiles often and coos a bit. She watches everything and studies faces, and has even started trying to "talk" back to us by mimicking our mouth movements. So, developmentally, all is still well, even with the drugs.

Back on the methadone

Again. I kept talking to the doctors, and they kept telling me it was colic. So, I spent a few hours doing research on the Web, and came up with a thing called the NAS score, which measures withdrawal symptoms to determine whether they are withdrawals, and if they're severe enough to need treatment. Anything over an 8 (the range is 1-18 or 20 I think) is considered withdrawals requiring treatment. 12-15 = severe. Sadie was scoring 12-16 for 8 hours straight (I did the scoring every 2 hours) Monday night.

I called the pediatrician the next day and got an appt, and called the cardiologist. I explained to the pediatrician the scoring system (she didn't have a clue). One of the items listed is diarrhea. She had the nerve to question me on whether Sadie actually had diarrhea, saying htat all newborns have loose stools. Hello. I'm not a moron. So I explained to her that when almost flourescent poo is shooting from your daughter's bottom in a liquid form day and night, it is most likely considered "explosive, liquid diarrhea." I then dug a diaper out of the trash (she had kept me waiting for 45 minutes, which is enough time for Sadie to go through two) to illustrate it. She then agreed that it would be considered explosive and liquid. (sigh)

I had also armed myself with some literature I got from the Net. I found one doctor who wrote a recently published article in Analgesics and Anesthesia concerning methodone weaning, and emailed to him explaining my situation and asking him if he'd supply the article for my personal use. He replied within hours and not only sent the article, but also sent an offer to talk to any of the physicians we were dealing with and to help with any of my questions. What a nice guy!! His article had the scoring chart in it, as well as other useful info, which I used to walk the pediatrician through what happens when there's a severe narcotic withdrawal in an infant.

In the meantime, the cardiologist got on the phone to UVA, and came up with a new wean method - it will take about 4 weeks to go through it all again. Hopefully this time won't be as bad. Most kids don't respond this way - Sadie is the minority, so there's not a lot of research to support any method for getting her from here to there. It's all guesswork, and it makes me antsy as hell.

So, we're drugging her again. There were great results within 30 minutes of her first dose. The las two nights I've gotten 6-8 hours of sleep total! I was really upset about putting her back on it, fearing she'd become less lucid, but so far, so good. She's still very alert, and I got more smiles and coos this morning than I've ever gotten in one sitting. I just hope it keeps up. I'm scared to death that the drugs will screw up her development. She's already been through so much, but she's on par with where she should be - even a little ahead of schedule. It amazes me how well she does in spite of all these medical setbacks.

It's been so nice the last two days. It's like having a normal baby. She's cried maybe 4 hours a day (mostly in evenings - she IS a bit colicky), which I can totally handle. I'd forgotten how abnormal our life was until it got a little closer to what normal should be. I've showered two days in a row! Eaten! Slept! Worked! I feel totally pampered at this point. :)

Why won't the crying stop?!!!!

She's still crying. Now she's barely sleeping. Tonight has been awful. I don't understand!!!

I did a bunch of research on the Web today and found that withdrawals can often come and go for a month or two. No doctor told me that. Thanks. There's such a thing, especially with methadone, of delayed withdrawal as well. Which could explain the couple of good days last week, then the sudden plunge back into the crying.

I am trying everything under the sun to soothe colic. I went to a million and one places (ok, 5, but whatever) to find some Gripe Water today, which has chamomile, ginger and fennel. No real effect. I have some "tummy soother" on order from CVS. We douse her with Mylicon. That helps, for like 2 minutes.

This evening she's been awake, except for one 20 minute nap, since 4:30. It's now 10:45. This is not normal infant behavior.

On the plus side, she is calm and awake for more minutes in the day than she was last week. She loves being on her changing table. The car seat on the dryer routine seems to work for 15 minutes or so, as well.

The feeding is getting wierd too. It's like sometimes she forgets how to suck and swallow. Yet all last week she did well with it.

So, more fun in the Thies household. If anyone wants to come spend the night, feel free. It's AWESOME.

Fun week! (read sarcasm)

So, we're finally off of methadone completely. Sadie hasn't had a dose since Sunday. She screamed all Sunday night. So, I woke in the morning and promptly fell down the stairs since I was so tired. On Wednesday I finally broke down and went to the doctor and found out I fractured my elbow and sprained my shoulder. Sweet. Yesterday I noticed that my knee also hurts and is swollen. More fun!

Katie ended up getting a bladder infection from her UTI, so we were back in the doctors office for that this week. It also turns out her long-term GI problems are worse than ever - she has multiple golf-ball sized impactions throughout her intestines. So, she's on a load of laxatives to blast them out, and we had to do 3 enemas on her to help her out. Four-year olds and enemas are not a good mix. Not that any age and an enema is fun.

Sadie's crying hasn't gotten better since getting her off of the methadone. If she's awake, she's crying or eating. Today I had maybe 2 hours of happy baby awake time (i.e. not crying or eating) which is a big improvement from any other day this week, but it's wearing me out. Especially since I feel like a truck hit me. I got some good smiles though, and she's becoming more alert and aware of her surroundings, so that keeps me going. Next week we go in to try to determine if it's some super nasty colic we're dealing with or if maybe there's some acid reflux mixed in. So much for not seeing the doctors weekly!