❤ Meet our February 21st Heart Warrior Jon ❤ Son to Candice Rigdon. Jon was born on the 21st of the month so I thought this was a good day to honor this sweet little boy!!
Jon’s story as told by his Mommy:
Our miracle baby was born 11/21/11 at 9:55pm, 6 lbs 9 oz. 20.5 inches - with Hypoplastic Left Heart Syndrome (HLHS) and a few other minor issues related to this condition. Basically he has half a heart. He has already had 3 open heart surgeries all before he was 4 months! Jon's daddy, Shane is in the Army stationed at Fort Sill, Ok. We have two girls as well. Trinity, 11 years old and Destiny, 26 months old.
We found out about his condition at our 20 week ultrasound. The scariest news I've ever gotten in my life. Though we were blessed to find this out before he was born as our hospital would not have been equipped to give Jon the care he needed right after birth.
We temporarily relocated to Dallas, TX. Jon received treatment at Children's Medical Center Dallas. Most of the time I stayed in Dallas with Jon and Destiny. Shane maintained the home front in Oklahoma as he had to return to work and keep Trinity active in school. Shane tried to visit every weekend. This was our life for nearly 4 months. Jon's fragile stage between his second and third surgery required us to be close to the hospital. Once he received his third surgery, the Glenn we had a two week check up and our little man proved to be quite the warrior! He was doing great and we were given the ok to go home!
Though I was a bundle if nerves having Jon home for the first time and being far from his hospital we adjusted well to our new normal. Jon is 14 months old now and doing awesome. He continues check ups in Dallas every 4 months. He will need at least one more surgery at 3-4 years of age and possible a heart transplant later on his life.
I believe the hardest part of this journey is the unknown. I remind myself daily to enjoy each moment we have with our miracle boy. As we have become close to many in the heart baby community life is bittersweet. We face the harsh reality of being a heart mom as fellow heart babies struggle in their battle, and some sadly lose it. We also rejoice in the triumphs of fellow heart warriors thriving in their journey. With the love and support of new and old friends and family we move forward with a bright future for our son in sight. It has been a long road already, but God has blessed us and Jon is doing awesome!
Please visit Jon's Blog and Page where you can read his full journey and receive updates:
www.facebook.com/
www.caringbridge.org/
Jon’s story as told by his Mommy:
Our miracle baby was born 11/21/11 at 9:55pm, 6 lbs 9 oz. 20.5 inches - with Hypoplastic Left Heart Syndrome (HLHS) and a few other minor issues related to this condition. Basically he has half a heart. He has already had 3 open heart surgeries all before he was 4 months! Jon's daddy, Shane is in the Army stationed at Fort Sill, Ok. We have two girls as well. Trinity, 11 years old and Destiny, 26 months old.
We found out about his condition at our 20 week ultrasound. The scariest news I've ever gotten in my life. Though we were blessed to find this out before he was born as our hospital would not have been equipped to give Jon the care he needed right after birth.
We temporarily relocated to Dallas, TX. Jon received treatment at Children's Medical Center Dallas. Most of the time I stayed in Dallas with Jon and Destiny. Shane maintained the home front in Oklahoma as he had to return to work and keep Trinity active in school. Shane tried to visit every weekend. This was our life for nearly 4 months. Jon's fragile stage between his second and third surgery required us to be close to the hospital. Once he received his third surgery, the Glenn we had a two week check up and our little man proved to be quite the warrior! He was doing great and we were given the ok to go home!
Though I was a bundle if nerves having Jon home for the first time and being far from his hospital we adjusted well to our new normal. Jon is 14 months old now and doing awesome. He continues check ups in Dallas every 4 months. He will need at least one more surgery at 3-4 years of age and possible a heart transplant later on his life.
I believe the hardest part of this journey is the unknown. I remind myself daily to enjoy each moment we have with our miracle boy. As we have become close to many in the heart baby community life is bittersweet. We face the harsh reality of being a heart mom as fellow heart babies struggle in their battle, and some sadly lose it. We also rejoice in the triumphs of fellow heart warriors thriving in their journey. With the love and support of new and old friends and family we move forward with a bright future for our son in sight. It has been a long road already, but God has blessed us and Jon is doing awesome!
Please visit Jon's Blog and Page where you can read his full journey and receive updates:
www.facebook.com/
www.caringbridge.org/
❤ Heart Awareness Month ❤ Meet our February 22nd Heart Warrior Maverick. Son to Kirstin and Brandon.
Maverick's story as told by his Mommy:
Here is my little mans story
On Valentine’s Day 2012 Brandon and I were heading to the OBGYN for a really exciting day. One we had been waiting on since we had found out about Baby Davey.
It was our 20 week anatomy scan and we were going to figure out (FINALLY) if we were having a little boy or a little girl. Our ultrasound took forever. We were told we would be having a little boy!!! We had already picked out a name for our little sweetie, his name was Maverick.
After she told us his gender it was scan after scan after scan of his heart. The lady told us she couldn’t see his heart very well and that it might have been because of the way he was positioned. We left the room and went to see my OB. She told us that we would just repeat the scan at our next appointment which at that point was a month away.
We were fine with that (who wouldn’t want to see another beautiful profile of their unborn baby?). We went to the mall and bought our baby boy to be a superman onesie and went home for a Valentine’s Day date to watch Top Gun ❤.
The next day we were going about our normal business and I received a call from my OB saying that she was reviewing Maverick’s scan and she wanted to send us to get a special scan of his heart called a fetal echocardiogram. She said she couldn’t see his heart very well either and this was the best way to get a view of his heart, it could be nothing so we were told not to worry.
We scheduled that first fetal echo scan for March 20, 2012. It was 5 very long weeks away. (Quick side note: I felt something was wrong since we had found out about Maverick. I bled a lot in the beginning and we had MANY ultrasounds, all of them showing a perfect heart, and perfect baby). We were nervous, but we kept telling ourselves that it was just to rule out that anything was wrong with his heart. How could it not be perfect, I had done EVERYTHING right?
March 20 came slowly and finally it was the day we had been waiting on. It was stressful waiting because our appointment was scheduled for the afternoon. After waiting in the waiting room for what felt like an eternity we were called back. An ultrasound tech came in and did an anatomy scan (mostly in 3D which was AMAZING to see, and of course we fell in love with Maverick all over again).
Then our cardiologist came in, one we would get to know very well, and he did the fetal echo. It was about an hour of pure silence, you could tell he was really focusing and trying to get the best images. Brandon and I were just staring at the scan trying to figure out what blurry parts were where, when Dr. Kumar broke the silence with “It seems as though your baby has Hypoplastic Left Heart Syndrome”. Brandon and I stared at him blankly. What in the heck is that?
My next question was “Is that bad?” The doctor let us know as he was drawing a diagram of a normal heart and Maverick’s heart to show us the differences that it was extremely severe and not good at all. He also showed us that Maverick had Double Outlet Right Ventricle and Mitral Atresia. He asked us if we had questions, we met with the coordinator who would ease our fears and answer millions of questions in the future.
They told us we had the option to abort if we wanted to. Excuse me? Yes, they legally have to give that option to babies with this severe of a diagnosis. It wasn’t an option for us. Then we got the “don’t google his diagnosis, only go to accredited sites like Mayo Clinic”.
On our way home from the appointment it was silent in the car. I called my mom first and could barely get through the conversation because I was crying so hard, Brandon was crying as well. I later found out that when we got off the phone, my mom cried when she told my dad. This wasn’t just going to affect us; it would affect our family too.
We drove to Brandon’s family’s house and told them the news, we drew pictures, and it was at that moment when we looked at them that we realized we would have to suck it up and be strong for everyone. Maverick’s little self needed to be surrounded by positivity and that was what was going to happen.
The thing with most Hypoplast babies is that there is a way to alter their heart’s anatomy to make it function affectively. It is a three step surgery process. When I say surgery what I mean is open heart surgery, the baby is on bypass. The first surgery happens right after birth, the second a few months later and then the third a few years later. We took this time to find as much information as possible.
We networked, I found Heart Sisters who provided me with my first ounce of hope. Then they led me to my Heart Mamas who I laugh with and cry with and love their babies like they are my own. They provide me with support during my darkest moments, they understand.
The decision was made that Maverick’s birth would be Induced on June 29, 2012. He was born via caesarean section at 11:17pm on June 29th. He was gorgeous and perfect and looked healthy. He didn’t require any intervention until he was 2 weeks old (we stayed inpatient until then). He didn’t have to have the first open heart surgery; he instead had 2 closed heart surgeries. He had a PA banding and then an atrial septostomy.
He recovered well and we stayed in the NICU until he was 1.5 months because he was having a hard time eating. We went home late August and Brandon and I started classes the following week (we are both college students). Maverick had many checkups and echocardiograms. He was in the pediatrician’s office MULTIPLE times a week. I still felt like something was wrong so I was a nervous wreck. He had blood clots so we were giving him twice daily shots of lovenox (blood thinners, but overall he was our champion.
Brandon and I made the decision to check for second opinions and landed at Riley Children’s hospital. They have a surgeon that is ranked in the top 1%. If our little baby was going to have a huge surgery, we wanted the best. We went for an initial appointment and fell in love with the hospital. Maverick’s second surgery (hemi-fontan) was scheduled for December 14th, and he had a heart catheterization to check function and pressures scheduled for November 2nd. We were nervous, but it was just a cath.
The morning of the cath Maverick was super smiley and playful. They took him back and the cath was successful. His pressures were a little high, but we were still set to go ahead with the hemi-fontan. Heart catheterizations are usually outpatient procedures so we went home that evening.
That night Maverick was a little fussy which was totally understandable, he didn’t want to eat much either, which was definitely not out of the ordinary. It was a long night because he wasn’t sleeping very well and something just didn’t feel right. His face was swollen. We called the fellow on call and they said he was probably having an allergic reaction to the tape that had been placed on his face during the procedure, but if he started breathing heavier to bring him in to be looked at.
We went to sleep.
The next morning nothing had changed and the Benadryl that we gave him hadn’t made a difference, his face was actually more swollen. I emailed his cardiologist and she must have been busy (she’s EXTREMELY busy all the time) so we just made the decision to take him in to be checked out.
The lady checking us into the ER got us a room right away and we had a nurse with us from the second we got there. We love Riley Children’s Hospital. About a half hour after we got there Maverick was breathing really heavy and quickly, an hour had passed now and he was gasping (grunting) for air.
They were quickly trying to get an IV in him and he just laid their limp, he had no energy. It was terrible to watch. They checked his blood gas (VBG) and his PH was 6.99. The doctor told us later on that with a PH that low, most babies don’t make it.
Maverick was set to head to heart center, but after that result he got rushed (I’m talking full on jogged to the ICU). When the team got to the elevator they pushed Brandon and I out. The last thing I saw was the Respiratory Therapist rushing to the front of his bed and grabbing an ambu bag. I still have nightmares about this moment.
The moments that followed were in slow motion. I fell to the floor sobbing, I didn’t know where my baby was going, I didn’t know what to think, when an RT runs to the front of the bed with an ambu bag it is NEVER a good thing. We were terrified. Brandon was the smart one (thank goodness) and watched the elevator light to see what floor they got off on.
We caught the next elevator and meandered down the long hallway leading to the ICU. We got to the door and pushed the button to ask someone to let us in. When the door opened a couple of nurses stopped us and told us we couldn’t see him yet and that our doctor would be out soon.
Finally we were ushered to a waiting room and when the doctor came in she told us what no parent wants to heart. “We aren’t sure if Maverick is going to make it”. We had a long conversation and talked about the possibility of ECMO (not a good thing) and the possibility of heart transplant. She gave us a hug and then left the room. The rest of the time we sat in the waiting room and prayed with the chaplain.
Heart transplant was always a possibility for the future, but we hadn’t really ever considered it because maverick was a candidate for the 3 stage surgery. Heart transplant isn’t an overall fix. Like our favorite interventional cardiologist said to us “with heart transplant you are trading one illness for another”. We were finally taken to where Maverick was and he was paralyzed.
He had a breathing tube in and tons of IVs coming from everywhere. He was laying naked on the bed all sprawled out. He had a heating blanket on and was white. He had stuff all over him. It is terrible to see your child like that, but sadly enough we had seen this before.
Everything went uphill for Maverick from there out. He impressed all of his doctors and was finally allowed to go to heart center. Once we were in heart center we were listed for transplant.
Maverick was listed as status 1a because he was on a life support does of Milrinone. We waited for two months. January 4th we received the call that would change our lives forever. They had found a perfect donor heart for our sweetie.
I don’t know how to put into words what you feel when you get that call. I immediately started shaking. I left the room to call my mom and about passed out walking down the hallway. I bawled the whole time I was on the phone with her. I couldn’t focus on anything. I was so happy, so scared, so sad for the family, so everything. It was a confusing time. It was a long 48 hours. Brandon and I got about 2 hours of sleep and then went back the next morning for Maverick’s special Heart Day.
It was January 5th, a day we will remember forever. We spent the whole morning with our precious miracle. We cuddled with him, played with him, prayed over him, cried with him, laughed with him. At 11am they came to get us and we walked him to the OR, the whole time I was trying not to cry when I was answering questions about him. The OR nurse came and took him from me to walk him to the OR, we told him we loved him and then he was gone. I started crying. I cried for about 5 minutes and hugged Brandon and then I was done. It was time to be positive.
Our amazing friends and family surrounded us that day with love for our Maverick and love for us. We had a great day with them and they were the perfect distraction. They held their breath with us every call that we got, and breathed a sigh of relief when we got the world’s most amazing call. The new heart was in and beating. How do you describe that moment? You just can’t. It was beautiful and perfect and I will remember it forever.
I hold our donor family very close to my heart. They made the ultimate sacrifice and gave my child life. Their child will live on in Maverick for as long as we are blessed with him, and we will make sure Maverick knows about his amazing gift of love.
Maverick is 7 months old and 1 month post transplant now and he is doing amazing. He has a facebook page called Maverick’s Mighty Heart which I try to update every day. Last Monday we found out that from his first biopsy his body hadn’t rejected his new heart at all. Our story is a messy, crazy, beautiful, but it is ours. ❤
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