Tuesday, May 31, 2011

Hope

Jeff has been a pediatric dental resident at the Children's Hospital of Philadelphia (CHOP) for the last 2 years.  I've taken my kids to their ER several times over the last 6 years (RSV, Concussions, etc) and have always been pleased with the care we've received.  There is something about being there that fills your heart with hope.  In fact, CHOP's motto is "Hope lives here...right here." 

I agree with their motto...more now than ever.

Last Thursday we spent the day with the cardiomyopathy team from CHOP to follow-up on Chase's heart condition.  Many have wondered why we didn't go to CHOP to begin with.  When Chase's pediatrician 1st
heard the murmur, she told me to schedule a pediatric cardiology appointment at the facility I could get the appt the soonest.  It happened to be an office that was tied to Nemours Children's Hospital (Dupont) in Delaware.  So, when the cardiologist from that office diagnosed Chase, she called Nemours and told them I was coming.  I told her my husband worked at CHOP but she wanted to follow up with Chase the next morning so I went ahead and took him to Dupont.  They took great care of us there.  The nurses were fabulous.  Unfortunately, it didn't seem like they knew quite as much about Chase's condition because of how young he was and how severe his case already was.  After they monitored him on his medication, we told them we'd like to continue our care at CHOP.  So, they kindly accepted our request and scheduled us an appointment with one of the top Pediatric Cardiomyopathy teams in the nation.  The appointment was 6 days from the day we left the hospital and we just couldn't wait.  We had many questions already answered, but had thought of a hundred more.

The day finally came.  After several hours of testing for Chase at the CHOP cardiology dept (another EKG and Echocardiogram) we were finally able to meet with the Cardiologist (Dr. Kaufman) and her  4th year cardiac fellow.  Their team represents one of the highest rated pediatric cardiomyopathy teams in the world.  Unbelievably, they spent almost 2 hours in that room with us and answered every question.  Peace and reassurance began to take over the despair and fear that had been consuming my body for over a week.  Although Chase's diagnosis had not changed, Dr. Kaufman gave us just the news we had been craving to hear.

 

There is hope for Chase...

Some of the many things we learned from this appointment:

*Although Chase's condition is severe, he has been asymptomatic up to this point (showing no signs of heart failure) and has demonstrated no signs of developing an arrhythmia thus far.

*So far he responding well with medication and can continue to be managed with medicine (propanolol..beta blocker).

*Most sudden arrhythmia's in babies with HCM occur within the 1st year (huge sigh of relief!)

*When we move to Austin we will only be 3 hours away from another one of the top Children's Cardiomyopathy Centers in the nation located in Houston.

*As Chase grows older, the number of medical interventions and surgical procedures which can be performed (with fewer complications) increases.  We need Chase to make it to 3 or 4 years old so we'll have more options available to us for his future care.

*If Chase can respond well to therapy he can have a reasonable life expectancy with some activity restrictions.

*We live in an amazing time of medical innovation and there are treatments now available to these kiddos that didn't even exist just 15 years ago.

Jeff and I left her office with so much hope.  We felt 30 lbs lighter (if only I'd really shed 30 lbs while being there!)  The fact that there's even a chance that Chase could live for many years was music to our ears.  We are far from out of the woods, and really never will be, but at least we have hope.  That's good enough for me.

That brings me to my next topic...ALL OF YOU!  We have been so humbled and lifted by your words.  Your kind messages have brought us more hope than any doctor could give.  Jeff and I have sat together and read all of your comments one by one and have cried tears of joy as we have come to understand what true friendship and shear kindness really is.  Thank you so much for EVERYTHING you have done for us. 

Chase is a fighter.  I have no doubt about that.  He has had his own agenda since the day he was conceived without us even knowing.  He decided it was time to be born only 8 hours before my scheduled C-Section.  Laboring and delivering Chase was the most traumatic experience of my life up to that point.  He was by a landslide the most difficult baby of all 4 of my children.  He has always been so stubborn and needy. 

I wouldn't have had it any other way. 

I know now that he does have a mission.  He insists on being heard and unforgotten.  When he was an infant, the only time he didn't cry was when he was in mine or Jeff's arms.  If he hadn't been that way, it would have been easy to let him hang out in his bouncy seat, lay on the floor and just watch me as I tried to keep up on my other tasks, take care of his brother and sisters and not take the time with him that he deserved.  I'm so glad he is the way he is.

Below is a photo slideshow I made for Chase the week after he was born.  I am so blessed to be his mom. 

video

Wednesday, May 25, 2011

1 week ago, today

Chase,

The last 7 days have felt like years. One week ago, this morning, I was blessed with a new perspective on life, a better understanding that our lives and care are in the hands of a Father in heaven, and a greater love for you and my family than ever before. At times, it still feels like more than I can bear. YOU are my motivation to move on with my life. To live it fuller, deeper, to appreciate the little things more fervently.

I love you so much. I'm so grateful that I get to spend another day with you.

Love, Mom

p.s... You can do hard things

Tuesday, May 24, 2011

Giving Thanks

I really don't know where to begin giving thanks. There has been an overwhelming outpouring of love, service, prayers and support by so many of you. We have only known for less than a week and I am amazed by the endless acts of service and sacrifices that you have made for us.
Thank you for all the ways you've reached out. Thank you for the emails, facebook messages and texts. Thank you for letting me cry on your shoulders, for crying with me over the phone. (Don't ever hesitate to call. I may not be able to answer every time, but I appreciate you thinking of me.) You'll never know what your words of encouragement have meant to me.

Thank you for the beautiful flowers on my porch. They remind me of my most cherished friendships.
Thank you for the meals and the priesthood blessings, for fasting for Chase.

Thank you for watching my other kids, for providing them with food, clothing, shelter, and love when Jeff and I couldn't be there.

Thank you all... we love you so much. We can feel your prayers.




Thanks for the plate, Jenny. I love it!

Sunday, May 22, 2011

Big Brother

Ethan's primary teacher on Sunday stopped me in the hall and asked me what was going on. She has said that Ethan mentioned something about Chase's condition. Before I began explaining it to her, I asked her what Ethan had told her. We had told Ethan very little at this point and I was unsure about how much he understood. She said their lesson for today was about obedience and prayer. Ethan immediately raised his hand and shared with the class that his little brother's heart was sick. He said he'd been praying every night that one day he would be able run with Chase.


Tears flowed from my eyes.


So tender.

Saturday, May 21, 2011

Before we knew

We were discharged from the hospital last night. You seem to be adjusting well to your medications..well, at least on paper. The symptoms of the medication are really starting to become evident. You wobbled in your crib, could not sit up without toppling over. Must be the dizziness. I can't imagine how weird your little body must be feeling. I'm so glad you're home.



I miss not knowing about your condition. I miss laying you down for a nap or bedtime without wondering and worrying.


I miss anticipating the day that Ethan would teach you to learn how to ride a bike...to learn how to play all of the sports he loves.


But, with any trial, comes many blessings. As much as I loved you before we knew, I took you for granted. As I watched Brooklyn cry because her friend took a toy from her she never plays with, it made me think of you. I thought of how you really never fully appreciate something or someone until you realize you may lose it. This is one blaring blessing in all of this. I love and cherish you more now than ever. I adore the little things that make you so unique.


I love the way you voraciously attack your cheerios as if it was your first meal


I love the way you twirl your hands like you're getting ready to ride Papa's Harley


I love the screechy sound of your chuckle. There's nothing like it


I love your infectious smile and your cute teeth peeking out


I love the sound of your sweet voice as you mumble "mum mum" and "da"


I love the smile in your eyes and the energy in your countenance as I enter your room each morning


I love the smirk on your face when I stick out my tongue and you study how you're


going to grab it


I love the way you love your doggie...you really love him. I'm so glad he brings you comfort


I love you Chase, more today than yesterday

Friday, May 20, 2011

The 1st day of the rest of our lives

It was like any other day....chaos in the morning trying to get kids dressed, fed and off to school. This day was a little more crazy since I had to be out of the house by 8:30 with the house in tact for a showing later than day and Brooklyn dropped off at the sitters. Today was Chase's pediatric Cardiology appointment that we'd been anticipating for a month.

I had no idea that it would be the 1st day of the rest of my life.

At Chase's 1 year well check, he was a little sick. Everything checked out great, but his pediatrician Dr. Dewan), said she thought she may have heard a murmur in his heart. He was also showing signs of developmental delay so she urged me to schedule 2 appts...pediatric cardiology and an early intervention evaluation. I didn't know yet that these 2 appts would relate to each other.

In the month leading to the cardiology appointment, I thought about the possible murmur from time to time but was reassured when I remembered that his doctor said that 90% of murmurs are no big deal.

It was May 17, 2011 and I took Chase into his pediatrician because he'd had a high fever for a few days. This time we saw a different doctor. He checked him out from head to toe and said it looked like he had the coxsakie virus. Before we left, I told him about the other doc hearing a murmur and asked if he would take a listen to see if he could hear it too. He could. He said it sounded a little different than a typical murmur. He was glad I had already had the appointment for the cardiologist scheduled. It would still be 1 1/2 weeks until that appointment though. On my way home from the doctor, I received a call from the ped card office saying that an early appointment had opened up the following day...so I jumped on it.

The next morning (May 18) we arrived 20 min late to the appointment due to traffic. I hate being late, but I was happy they were still willing to see us. The nurse took Chase's usual vitals.. temperature, blood pressure, etc. He still had a low grade fever from the virus. Then, the nurse took the EKG. We were moved to a different room to meet the doctor. Her name was Dr. Zappalla. She walked in, glanced at Chase, and said..."wow, he looks healthy! I'm sure he's fine. He doesn't look like the typical heart patient we see. Check out those chubby thighs!" I felt reassured. As I held Chase in my lap she listened to his heart with her stethoscope and said, "hmmm, I can't hear it. Let's lay him on the table." After laying him down and listening, she finally heard it. She still thought it was an innocent murmur but decided to order an echo cardiogram just to be safe.

Chase was so calm during the echo. I remember commenting several times just how unusual it was for him to be so still. I took several pictures of him with my phone while he laid there so still.
We were moved back to our room and told to wait for the doctor. Chase and I waited for about 15 minutes. These 15 min were nothing but pure joy for me. He was being so cute. I thought to myself over and over again how cute he was and how much I was enjoying spending alone time with him. In fact, my sister Shanda called and I recall telling her just how much I loved him...at that very moment. I told her how he was at such a fun age and how I wanted to freeze time. Then, my sister Stacy clicked in. I shared with her my same feelings about Chase. I was overwhelmed with love for him and just adored every ounce of him. As I was talking to my sister, Dr. Zappalla walked in.

I had no idea that in that instant, my life would never be the same.

"Okay Mrs. Gregerson, I was not expecting that." My heart stopped. "Your son has hypertrophic cardiomyopathy."

Huh? What's that? How do we fix it?

"You need to get him over to Dupont Children's Hospital and have him admitted right away to start medication. He is at risk for sudden death without it...I'm so sorry."

Chase looked up with me and grinned and my eyes welled up with tears. Dr. Zappalla proceeded to explain to me that he had a thick heart...in all of her medical terminology...blah blah blah. I nodded as she tried to explain it to me but all I could think about was...would he be okay? Could he still live a normal life? I couldn't ask her. I was too afraid. The Dr. then informed me that it was commonly passed down genetically and that Jeff and I and the rest of our kids would have to be tested. It was too much to process. I didn't know what to say. She stepped out to call the hospital to let them know we were coming.

I picked up the phone and called Jeff. I told him his diagnosis and I could hear the worry in his voice. "Have you heard of this condition? Will he be okay?" He sighed in disbelief and then went on to explain to me what he knew about the condition. He explained that he would need to be on medicine for the rest of his life and that we would not be allowed to be active in sports, etc. Tears started to flow harder as I pictured him being Ethan's age and imagining having that conversation with him explaining that he couldn't play sports. How do you explain this to a boy? Then my mind immediately jumped ahead to the age of 19. Would he be able to serve a mission? If his kids have a 50% chance of inheriting it from him, who would marry him? I couldn't stop the tears.

The Dr. apologized again, handed me information about his diagnosis, and sent us on our way. Tears continued to flow as I left the office, went down the elevator, and walked out of the building. I passed several people on my way out..and watched them in conversation carrying on with their life and remember feeling numb inside...like my world had frozen in time. I called my mom as soon as I entered the parking lot and started to ball as I began to explain what I had just learned. We cried together. Neither of us understood why this was happening. I had so many questions.

Jeff came home from work. I put Chase down for a nap as I began packing for the hospital. I immediately went online to start researching his condition. I felt sad for Chase but encouraged as I read that most people with hypertrophic cardiomyopathy (HCM) live long and fulfilling lives. They just have to watch their activity. I told Jeff, "Chase will find other things he enjoys. He might be musical, artistic..or even take up golf."

After making arrangements for my other kids, we headed to Dupont Children's Hospital in Wilmington, DE. Neither of us had ever been there. The Dr. that diagnosed Chase wanted us to go there since she had privileges there and wanted to follow up with us the next morning. We entered the cardiology floor and as we approached the nurse's station, all of the eyes turned towards us. One nurse said, "are you Chase?" How did she know? It was after 2pm, were we the only one's to have an admission that day?

The nurse practitioner introduced herself and then the pediatric cardiologist walked over to us. Jeff started firing questions at him. He asked how severe Chase's case was. The cardiologist said he hadn't looked at Chase's numbers yet but that he knew it was very uncommon for this condition to be diagnosed at such a young age. The nurse practitioner pulled up his numbers on her computer screen to show the cardiologist. I could read her face as she turned the screen for his view. My heart began to beat rapidly. Dr. Tsuda (ped cardiologist) looked at the numbers and his eyes immediately got big. "Well, his case is very severe." I wanted to pass out. What did that mean? I realized I was in over my head. The motherly control freak in me wanted to grab Chase and run...far away...and never let go. I didn't want to hear anymore.

I realized at that moment that the fact that he would not be able to be active was the least of my worries. Questions flooded my mind. Why wasn't this detected before? Can he get better? What about a heart transplant? What does severe mean? Why is this happening to me? To him? He looks fine. He looks perfect. I'm so confused. My heart is breaking.

They checked us into our room and started hooking him up to monitors. I couldn't help but notice that the staff around us seemed happy everywhere else but in our room. They were all somber and kept apologizing to us as they introduced themselves. Why were they apologizing? Chase will be fine, right? What are they not telling me?

Then, Jeff finally asked the question that was weighing on both of our minds. What is the prognosis? The nurse practitioner very delicately explained to us that the prognosis of hypertrophic cardiomyopathy is split into thirds. "1/3 of them (mild cases) go on to live fairly normal lives with mediation and reduced activity..(chase did not fall into this category). 1/3 become eligible for heart transplants, and 1/3 of them we don't speak about."

My heart officially crushed into a million little pieces. The fact that we were even having that conversation was too much to bear. I burst into an all out sob and just cried in disbelief.

Our best case scenario at that moment was that Chase would need a heart transplant. How could this be? When I woke up this morning...today was a normal day. He looks the exact same as he did 3 hours ago. Are they sure they didn't mix up his echo cardiogram with someone else's? It was all happening too fast.

Jeff and I held each other as we began the process of coming to grips with our new normal. The nurses began the medication immediately. He started Propranalol (beta blocker) which will help slow down his heart rate and reduce his blood pressure. My baby was only 13 months old and would now need blood pressure medication to stay alive.

Over the course of the next few days, we learned a lot about Chase's condition. Chase has hypertrophic obstructive cardiomyopathy. Click here for info about cardiomyopathy from the CMF foundation. It describes all forms and types of the condition. The thickness surrounding his left ventricle is 13-15 mm. He is at a very high risk of arrhythmia which could cause sudden death at any time. It is a difficult murmur to hear...so the fact that his pediatrician heard it in the 1st place was a miracle. I am so greatful for Dr. Dewan.  He may have passed from sudden death and we never would have known until it was too late.  This condition is very rare in babies. Only 5 out of a million are diagnosed. We would then learn that his case is one of the more severe ever seen. There have only been 2 cases seen by the cardiologist treating him at the hospital since he began practicing. His condition is very rare...so there is little research and little that can be done.

The feeling of hopelessness is overwhelming. I would do ANYTHING to trade places with him. I wanted to rip his chest open and trade hearts with him. I had no control over the situation..and it was killing me.

We would also learn that his case will not improve...but only get worse over time. The medicine will help reduce his risk of arrhythmia's or cardiac failure. The next goal is that he will live to be age 2 or 3 so the doctors can implant an internal defibrillator. His little body is too small to implant one now. The risks of the surgery outweigh the benefits. Oh, how I pray with all my might that he can get this internal defibrillator. It would bring me so much peace of mind. Other than the constant medication administered every 6 hours..day and night, external defibrillator is our only other defense right now.

We would learn that his excessive fussiness as a young infant were most likely due to chest pain. For months, we treated him with reflux medicine and were then told that it was probably just "colic." There really was no way of knowing. The only thing that would lead us to a cardiac specialist was to hear a murmur. His developmental delay is most likely due to being weak because his heart was overworking. I was heartbroken when I learned that he had not yet known a life without pain. I had no idea.

Our few days spent in the hospital felt like weeks. They wanted to monitor him to make sure his blood pressure and heart rate didn't slow down too much. Chase hated being there. He was in the hospital for a whole week only 2 months ago for RSV. He didn't seem to mind it then. This time was different. He had a very difficult time sleeping, eating, and adjusting. Some of the side effects of the medicine include dizziness and feeling weak. He could barely sit up on his own in the hospital crib after the 1st 8 hours of treatment.

Mine and Jeff's emotions have been all over the charts. We've cried more tears in the last few days than we've cried in a lifetime. We are beginning to accept that Chase has this condition and now looking forward to the future with faith. This experience was always the scenario that I couldn't spend much time thinking about. When hearing about other's trials (friends or acquaintances) regarding the health of well being of their children, I would cry as I tried to imagine being in their shoes. I just couldn't fathom it. I always felt like Heavenly Father would spare me from having to go through such a trial because surely He must know I am not strong enough. What do I have to learn from this? In the beginning, it was hard to see the blessings that could come from such a devastating blow. I didn't want to talk about why. I didn't want to think about what his purpose was here on earth. All I could think was that I wanted to be the one to raise him. To watch him go to kindergarten. To help him with his homework. I was being selfish...but I didn't care. Then..I slowly began to feel the tender mercies all around me. The blessings began to flow.

So far, there are endless blessings. Now, more than ever, we are relying on the Savior to carry us through this. Our perspective on life has completely changed. We've always known that family was most important next to the gospel, but now we realize that nothing else really matters. We are approaching one of the biggest transitions in our married lives in 5 weeks when we move our family across the country to Austin, TX. It would have been so easy to get caught up in all of the unimportant things...like granite color, tile vs hardwood, etc. Now, all that matters is our 4 beautiful children. Heavenly Father has a plan for Chase and for our family. Chase is a special and choice son of God. He was placed into our family for a reason and no matter how long or how short he stays with us here on earth, I am forever changed because of him.

I know that Heavenly Father and Jesus are aware of me and my family right now. I can feel my Savior's love around me. Heavenly Father gave His only begotten son so that we could live with him. I can't imagine how hard that must have been knowing that He actually did have the power to stop His son from suffering but knew that Jesus' sacrifice was necessary in order for us to return to Him. I have a greater appreciation for my temple marriage than ever. It brings me peace knowing that no matter what happens, I can live with my family for eternity.

This knowledge doesn't mean this journey will be easy...in fact, I still want to remain in denial that any of it happened to begin with. Life looks different these days...and it will for a while. We have a long road ahead of us. The most important thing...Chase is still with us. He looks great. Even though his heart is sick, I am so glad we caught it before it was too late.

This knowledge is helping me to cope...to pick up the shattered pieces of my heart.

I can do hard things.....