Courage is not the absence of fear, but rather the judgment that something else is more important than fear.

- Ambrose Redmoon


The way is not in the sky. The way is in the heart.

-Buddha



Thursday, February 28, 2013

Day 28: Meet Adelaide, Martin and Xavier


I am so sad that today is the last day of pediatric heart month.  It has been such an honor to share the stories of fellow heart families.  I hope that their strength and faith has been a source of inspiration.  All our heart warriors and angels have a story that needs to be shared!  

Day 28 we get to meet Adelaide, Martin and Xavier...I hope they make you smile!!!!  KNOWLEDGE IS POWER!!!  HEART HUGS!!!!   



MEET ADELAIDE!!!






Today, I saw a YouTube video that someone posted on Facebook… it was a video of a nurse giving a newborn baby a bath.  It was a very sweet video, and though it initially made me smile, I soon found myself tearing up as I watched the cuddly, sleepy, tiny newborn baby be cradled and bathed… because I missed out on so much of the joyful newborn baby experience.  I don’t often feel sorry for myself, but today I did – as I watched that video of that newborn baby, I felt sorry for the fact that I didn’t get that experience.  I didn’t give Adelaide a bath until she was almost three months old, because she spent the first eleven weeks of her life at Childrens Memorial Hospital.

Adelaide was born with a condition called hypoplastic left heart syndrome – HLHS.  We were unaware of her diagnosis before she was born, and we spent the first few days of her life in what I can now call (in hindsight) blissful naivety.  Looking back, I am so glad we had those days of cuddles and snuggles and happy family time, because they helped keep me going in the months that were about to come.  Adelaide passed two APGAR tests with flying colors, was pink and happy, and breastfed like a champ – we had no idea anything was wrong.  It wasn’t until she was three days old that her condition was discovered.

The last night before we were supposed to take Adelaide home, I had a sharp pain in my right leg.  Because I had a C-section, the doctor ordered an ultrasound of my leg to make sure everything was okay.  We sent Adelaide to the nursery so my husband could come to the ultrasound with me; this was the first time she had been away from us aside from the daily weight checks, as she had roomed in with us for our whole hospital stay.

Thankfully, my leg was fine.  However, while Adelaide was in the nursery, she turned grayish and started breathing rapidly.  One of the nurses noticed this and called the on-call doctor, who happened to be a cardiologist with the local childrens’ hospital.  He quickly ordered an echocardiogram, which showed that Adelaide had HLHS.  Basically, the left side of her heart was very underdeveloped and non-functional.  (It’s at this point that I have to say, it was nothing short of divine intervention that things unfolded as they did – I was given that pain in my leg for a reason… to make sure that Adelaide was under the constant watchful eyes of the nurses in the nursery, instead of in our dark hospital room as we slept, so that the nurse would notice her change in color – call the doctor – order the test – discover her life-threatening condition.  I don’t want to even think about what would have happened had she not been exactly where she was at the exact moment she needed to be.)

Another cardiologist came into my room around 3:30 that morning to explain Adelaide’s condition to us.  She let us know that within her first years of life, Adelaide would require three corrective surgeries to reroute the “plumbing” of her heart.  One would need to take place within the next several days, one around 4-5 months of age, and one around 2-3 years old.  Adelaide was going to be transported directly to Childrens Memorial Hospital in Chicago.  Before she was taken there, my husband and I were able to visit her in the NICU.  We were relieved to see that aside from some IV lines and bandages, she still looked like our daughter, and she didn’t seem to be in any pain.
Later that day, I was discharged from the hospital and my husband and I went to see Adelaide at Childrens – the place that would become our home away from home over the next three months.  

The first few weeks of Adelaide’s hospital stay were a busy blur of nurses, doctors, medicines, infections, and medical terminology I never thought I’d have to learn.  She was originally scheduled to have the first corrective surgery (The Norwood Procedure) at 8 days old, but it was postponed due to an infection in her bloodstream.  Thankfully, the infection cleared quickly and she had her Norwood at 13 days old.  The day of Adelaide’s surgery, our friends and family waited with us in the waiting room – anxiously awaiting updates from the APN as the surgery progressed.  After almost eight hours, Adelaide’s surgery was complete.  Things had gone as well as possible, and her heart had started beating on its own after she came off of the bypass machine – which was a very good sign.

After a week or so of incredibly fast recovery, unfortunately, Adelaide took a few steps backward.  Though she had been successfully extubated a few days after The Norwood, she started having trouble breathing on her own and ultimately had to have the breathing tube put back in to help her breathe and take some of her body’s workload away from her heart.  (If her body was struggling too much to breathe, it put more strain on her heart, which is bad in general – but especially bad for a baby who only has half of a heart and is recovering from open-heart surgery.)  Her heart function had also decreased and was not improving despite the breathing tube’s assistance to help her body recover.

It was at this point that we first met with the heart failure/heart transplant team.  I can’t remember exactly how or when the conversation we had with them changed from, “We just want to introduce ourselves to you in case we need to start talking about transplant as an option,” to, “We need to seriously talk about the process of listing your daughter for a heart transplant,” but… that happened, and one month exactly after Adelaide had her first open-heart surgery, we listed her for a heart transplant.

Adelaide was listed as status 1A – the most critical status, because she was on a ventilator and required a constant drip of IV drugs to help her heart function.  After we listed her, my husband and I struggled to deal with the fact that the thing we were most anxiously waiting for – a new heart for our daughter – meant that another family was about to experience the greatest tragedy and our worst nightmare.  It didn’t seem fair, but it was our reality.

Five short days after listing Adelaide for transplant, we got “the call.”  They had found a suitable donor heart for Adelaide and though they still had to go physically see the heart to confirm, all preliminary tests were very promising.  “The call” came the day after we had had a prayer service at our church, where friends and family came together to pray for a miracle.  “The call” also came on the eve of my husband’s and my fourth wedding anniversary.  We were overwhelmed, scared, excited, nervous, and overall – hopeful.  The signs were all favorable – our miracle was happening.

Adelaide went into her transplant surgery just after midnight on our wedding anniversary.  She was seven weeks old.  Around 7:00 that morning, the surgeon came out to tell us her surgery had gone very well, and that her new heart had started beating on its own – again, a wonderful sign.  

Adelaide had a very smooth recovery from her transplant.  When she was extubated three days after her surgery, she gave us her first smile – and it was in that moment that we knew she was going to be okay.

That’s not to say that life post-transplant isn’t without risks, or possible complications.  Adelaide will be on anti-rejection medicines for the rest of her life, and those medicines carry a looooooong laundry list of possible negative side effects and complications.  If you really want to know what those are, you can Google them – I’m not going to go into it here.  Because of her anti-rejection medicines, Adelaide also has basically no immune system, so she’s much more susceptible to infection and disease than your average person.  So yes, there are a lot of things that could pop up down the road and that may challenge us.

But, as her transplant team so often says (and we love them for having this mantra) – they didn’t save her life to not let her live.  They encourage us to help her have as normal a life as possible.  While we use caution and try not to take her out in public more than is necessary during the height of flu season, we still go out to dinner as a family now and then, and she loves to go to Target with us.  When she’s a bit older, we will take her to kid-friendly activities at the library, or at the park-district – and from the way she moves, I think she’ll love taking dance lessons when she’s ready!  And, we fully intend to send her to preschool, kindergarten, middle school, high school… college.  We will always be cautious, but we will never hold her back.  Her life was saved so she can LIVE. 



Adelaide is now almost 17 months old and is thriving.  Though she did have some slight physical and feeding delays due to spending the first three months of her life in the hospital, she quickly caught up and hit most of her baby milestones right on time.  She is currently a spunky, energetic, sweet, loving, talkative, smiley, adorable little girl who loves to dance, adores penguins, and gives the cutest little kisses.

I am so thankful to have this opportunity to share Adelaide’s story with those of you reading this, and I hope you have enjoyed learning about our little heart warrior.  I also hope that her story and journey can help spread even a little awareness about congenital heart defects and the impact they have on children’s and families’ lives every day.  Thank you for taking the time to read Adelaide’s story!









Meet Martin!!!



We found out about Martin's heart condition at our 20 week ultrasound. I remember that the technician seemed to be struggling to get the pictures she needed of Martin's heart. She called the doctor in. It was the first time we had ever had a doctor perform an ultrasound on one of our babies. He looked for a long time, and told us he had to go see another patient and that he would come back in a few minutes. While we were waiting, my husband told me to prepare for the doctor to say that something was wrong with our baby. I didn't want to believe it or even think about it. When the doctor came back and resumed the ultrasound on our baby's heart, Steven asked him if he thought there was a problem.  "Yes," the doctor said, "The left side of the baby's heart is missing. I believe your baby has a condition called hypoplastic left heart syndrome, and he will need open heart surgeries to survive." I was dumbfounded. The doctor eventually had to leave the room again, and after he walked out, I lost it. We had our other three children with us in the room as well, so I tried hard to pull it together for their sakes. We prayed together right there as a family for our little baby. Our routine 20 week ultrasound ended up lasting for over three hours.
The next week we met with our dear cardiologist, Dr. Malpass.  He performed a fetal echo, and then sat us down to talk about what we were facing. He was very blunt, but kind. He told us about the survival rates, the complications that often arise, the procedures that would have to be done. He answered our questions, sometimes even with tears of his own. He told us he would pray for our Martin.
The days leading up to Martin's birth were full of anxiety and tears, many tears. Every night we would play music for Martin. We prayed that the Lord would make him big and strong. One day we were at a birthday party and there was a woman there with her brand new baby. As I looked at that tiny newborn, I couldn't imagine a baby that small having his chest cut open, sternum cracked, and heart stopped for surgery. I cried all the way home. Steven constantly reminded me to lean on the Lord. The hymns that we always sang in church were suddenly so meaningful, and helped bring peace and comfort. Our family read through Psalm 34 many times during those days. The Psalm begins with "I will bless the Lord at all times; His praise shall continually be in my mouth." That is what we sought to do. How wonderful it is to have the Lord to lean on, especially in times like these!
I gave birth to Martin on February 3, 2012 in the OR of MUSC hospital in Charleston. He weighed in at exactly 7 pounds, my biggest baby! He was immediately taken away for an evaluation. I got to see him briefly, a couple hours later, as they were taking him to the ICU. He looked so perfect, so beautiful and peaceful. Three days passed by and on the fourth day, Martin had his first, big open-heart surgery. Handing my baby over to the anesthesiologist and watching him get taken away to surgery was the hardest thing I have ever done. Dr. Kavarana performed the surgery (Norwood) and it lasted for over 9 hours. Later that evening, we finally got to see him, and nothing could have prepared me for the moment when I first saw our tiny baby with his chest open and tubes and wires everywhere. It was hard, but I had to keep reminding myself that all this was saving his life.  We are very grateful for Martin's surgeon, Dr. Kavarana. He was amazing. Even though he had been in surgery all day working on Martin's heart, he stayed with him the whole night as well, and made sure that Martin remained stable.


Recovery was long and difficult. It seemed like that breathing tube would never come out, and Martin HATED it. He would cry, but no sound would come out. It was very sad. I wanted to hold him so badly, but they wouldn't let us because of all that he was hooked up to. After a number of days, our little fighter decided that he had had enough. Martin extubated himself during the night while the nurse wasn't looking, but his numbers dropped and the tube had to be put back in. We tried our best to comfort him, even though we couldn't hold him. Those days were hard. Babies around us passed away, there was much heartache, and much prayer. Finally, the glorious day came when the breathing tube came out! Martin was so much happier. After waiting for weeks, we finally got to hold him again. Eventually he started drinking from a bottle, but they wouldn't discharge us until Martin had a full feed every 3 hours. We won't ever forget those stressful feedings, trying to get him to eat so that we could get him home. We were finally discharged at 6 weeks post op! Being home again and united with our children was so wonderful, and Martin loved it.
Martin had a heart catheterization done at 5 months to see if he was ready for the next surgery. He had a very rough time with it. Everything ended up looking good heart-wise, but he really screamed and struggled in the recovery room, and could not be consoled. He came back to us with needle marks all over him from the IV attempts. He had definitely been traumatized. After that procedure he had night terrors for months, and he would wake up screaming every 1-2 hours at night.


He had his second stage surgery (the Glenn) at 6 months. Things went much more quickly and smoothly this time around, and we were home in a week! He had a difficult time getting off the pain meds, but he was back to his normal self a few days after getting home. His final heart surgery will probably happen around 2-3 years old.
You'd never know that Martin has half a heart. He has so much life and energy in him. He loves his siblings so much, and they are always loving on him and finding new ways to make him laugh. We celebrated his first birthday a couple weeks ago, what a joyous time that was! I would never have chosen this path for myself, but God knew what we needed. We are so thankful for all that He has taught us on this journey, and especially for the gift of Martin and his little half heart.
You can read more about Martin's story at www.babymartinlee.com



  


MEET XAVIER!!!




 I am a single mother my son Xavier Smith was born with a broken heart. I was not aware anything was wrong with him according to my obgyn everything was going as it was suppose to. He was born August 11th 2012 got released August 13th 2012 from the hospital and I ended up taking him back to the ER on August 14th 2012 because he was not eating anything anymore by mouth at first I was told something was wrong with his lungs they kept checking his oxygen and couldn't believe the numbers they were getting they kept getting different machines hoping one would show better number but it didn't happened they finally realized something was really wrong. Being we live in a really small town they got a hold of another hospital when they mentioned everything going on they knew right away what was wrong with my son they immediately started bagging him by hand for over 2 hours until they got the transport team and helicopter to us. He was diagnosed with HLHS. Had his Norwood procedure on August 21st 2012, and his Glen on November 27th 2012. He is doing great now and I am so blessed and thankful to have him here.
i also just started him a page





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