February 14: MY HEART BABY: Christian Matthew's story

 

Meet Superman Christian 

I was due December 4, 2012.  I was my mommy and daddy's first baby and a complete surprise! When mommy took the test she took 5 before she realized I was really in there!!!! She cried to my daddy because she was so happy! I felt my mommy and daddy's love from day 1! Mommy use to let me listen to music in her belly while she would work on her research papers and exams. I loved the music and would kick her belly when I heard it and then fall into a deep sleep dreaming about how I would get to meet her and daddy soon.  I liked when mommy and daddy would talk to me too and read stories.  I was their little nugget they said and they loved me with their whole hearts.

Mommy had a few scares because she found out she was O- and I could be O+ so they just would give her a few shots throughout her pregnancy with me so that her body know that I was something good.  All my doctor's appointments came back normal; I was a healthy baby boy or so everyone thought up until 37 weeks.  The doctor sent mommy to see how big I was and see if they could induce her at 40 weeks if I had not come yet. Mommy and daddy wanted to be induced because my daddy was being sent to go fight for our country in Afghanistan a couple weeks after my due date.  At the ultrasound I was squirming and the tech was having problems measuring my heart so she sent in another tech that was suppose to be a pro at getting squirmy baby's heart measurements.  She didn't talk the whole time she was in taking pictures of my heart and she started to worry my mommy and daddy.  She said she would go get the doctor.  Mommy knew something was wrong, but nothing could prepare her and daddy for what the doctors were going to reveal to them.

 The doctor came in with a genetics counselor and mommy just cried.  They explained that my little heart did not look like it had fully developed on the left side.  Mommy asked if it was something she did, she couldn't understand what had happened and why at 37 weeks this was just now being figured out, when the 20 week complete body scan of me had come back normal.  I hurt for my mommy because it was not her fault, my cells had just died during my development.  I knew she would blame herself even though she did everything right.  They sent my parents up to the children's hospital, A. I. Dupont, in Wilmington, DE to a specialist the very next day.  My parents called all my grandmas and grandpas to tell them to pray and ask for the scan to be wrong.  My mommy didn't sleep very much that night.  She cried a lot and told me how sorry she was she wasn't able to protect me like she thought she should have she rubbed her belly all night and told me she loved me and that I needed to stay strong. 

My mommy and daddy's worst fears were confirmed by Dr. Bhat the next day.  I suffered from Hypoplastic Left Heart Syndrome and that my pumping function was not what it should be. Dr. Bhat brought in who would be my surgeon, Dr. Pizarro, and mommy asked a lot of questions.  She hurt for me when heart transplant came out of Dr. P's mouth as a possibility. My parents were devastated. They held each other close as they cried. Never in a million years did they think they would have a child that was "broken." They didn't know it yet, but I would bring them the most joy they ever felt along with the most heart ache.

My mommy was now a high risk pregnancy and would deliver closer to A. I. Dupont in case I would need to be rushed their immediately.  They went to the hospital, Christiana, to discuss what the delivery plan was.  I would be here in 2 weeks they said by inducing mommy so that they could be prepared for me.  Mommy cried and prayed a lot the next 2 weeks.  My grandparents, mommy's parents and daddy's dad, came up to be here when I arrived.  I had a lot of people praying for me all around the WHOLE world.  I was born exactly 39 weeks on November 27, 2012 at 8:13 pm weighing in at 7 lbs 12 oz. and 21 in. long with a full head of dark hair.  Mommy only got to hold me a minute before they went to check me over.  I remained stable and was transported up to A. I. Dupont shortly after I arrived.  I did get to meet and spend some time with my grandparents and Daddy before I left.  Daddy and my grandpa Terry joined me that night and mommy and my grandma Lisa and grandpa Rolla came the next day.  The military had also taken my daddy off his deployment so he could spend time with me. 
                   I was diagnosed with Hypoplastic Left Heart Syndrome with mitral valve atesia and aortic valve atresia.  Mommy and daddy had to look at me through a plastic bubble because I needed regulated oxygen.  Dr. Pizarro and Dr. McCulloch explained to my parents that my pumping function was still not what it should be and I could not get the Norwood (the first heart procedure of an HLHS baby) until it increased.  At just 4 days old, I underwent my first heart surgery that would hopefully help my heart pump better.  They put bands around my pulmonary arteries.  When my mommy and daddy sent me off to the O.R. it was the hardest day thus far.  They kissed me and snuggled me for just a short bit before I had to go.  When I came back I would no longer be the smooth skinned baby, but a bruised and swollen baby with a huge incision on my chest and wires and tubes coming out everywhere.  I made it through the surgery with no complications. 

I then started to have blocked premature arterial contractions and some bradycardia (slow heart beats).  I had pacing wires inserted to help with this.  The Dr. Pizarro broke my parent's hearts when he explained I would not survive the Norwood and would have to get a complete heart transplant.  He said all the issues I was having with my heart he had never seen in a HLHS baby and my case was about 1 in 700,000.  Mommy and Daddy didn't realize how strong I was just yet because they cried and started to prepare for the worst.  A heart transplant was something that they had never expected.  I was listed as a 1A on 12/3/12 at 5:12pm.  My mommy cried a lot in the next week.  She apologized every time she saw me.  She told me she wished she could take my place.  Everyone in my family told me that.

                   I had thousands of people praying for me.  The news of my story had gone around many churches and was being shared.  My mommy pleaded with God and finally gave me and my situation completely to Him, she let go of what she couldn't change. God was listening because my parents got the news on 12/10/12 that my surgeon would be doing the Norwood procedure the next day because my heart had miraculously gotten better.  Silly doctors didn't realize my God was bigger than my defect.  12/11/12 I had open heart surgery, where they actually had to stop my heart and put me on bypass, the Stage I Norwood procedure with 5 mm right ventricle to pulmonary artery conduit shunt they also removed my banding around my PA.  It was the longest 7 hours of my parent's life.  I sailed through and was released to the recovery floor a week after.  Guess what else; they put me inactive on the transplant list.

                   I was never able to breast feed, but my mommy pumped for me for 10 weeks to get the nutrients.  I worked with a speach therapist to try and get me to bottle feed, but it was a slow process.  They were not very consistent and mommy and daddy got frustrated and refused to have me get a gastronomy tube because the lady just never worked with me.  They conducted a few studies to see how I swallowed and such.  I did not pass the swallow test and aspirated into my lungs due to the paralyzed left vocal cord I had (this was due to my breathing tube and should correct itself eventually) so the G-tube was the best option.  I also had reflux, so the doctors did what is called a Nissen fundopliction (tightening around the esophagus) so that I was not able to spit up and it go back down causing me again to aspirate into my lungs.
 
                   It was a long hard road, but on my 7 week birthday I was discharged! I finally got to go home and meet my puppies and spend time with my mommy and daddy.  They hold me all the time and I am always happy. Mommy tells me I am her little superman and God has big plans for me.  I was also completely removed from the transplant list because of how awesome I am doing.  My surgeon even calls me his miracle baby, because he doesn't understand how I am doing so well, but I do; it is purely by God.

Since my discharge I have had to switch from breast milk to straight formula that is already pre digested.  It is because they believe I have developed a milk protein allergy because I was having bloody stools.  My mommy pumped for 10 weeks total. 

                  I have 2 more surgeries to help with my HLHS.  Please follow my story and continue to pray for me and my family.  I am proof that God still preforms miracles.

http://www.facebook.com/#!/groups/Christianmatthewssupermanheart/

hunterandashlyssupermanchristian.blogspot.com


*please do not copy and post these pictures, we are sharing very sensitive pictures and do not want them shared except from us and our page*

First time I met my mommy and daddy

In my bubble in the CICU

 

Mommy, Daddy, and me right before handing me off for my first surgery

 

After my P.A. banding

reassured daddy before I went in for the Norwood

after the Norwood

sleeping in the CICU

I loved when mommy came to read to me

First time daddy got to hold me EVER

First time mommy got to hold me since 4 days old

NO MORE WIRES

DISCHARGED

All my super hero scars

I am home and HAPPY

February 13: Heart woman # 7: Meet Fun Loving Meghan

Meet Fun Loving Meghan

 

The fall of 1991 I came into the world, a healthy 8 pound 12 ounce baby girl. I was the first child of my parents, Patty and Rick Roswick and they couldn't have been more thrilled with my arrival. Everything seemed to be going great as they took me home and welcomed me into world. At 7 days old my mother noticed that I was breathing funny and immediately called my grandmot...her who said to take me to the doctors immediately. My mother rushed me to the local hospital where they took one look at me and told her that they did not like the look of me and whisked me away. With living in a small town, they were not equipped with what they needed to diagnose me so I was taken to another hospital about an hour away. I was diagnosed with Hypo-plastic Left Heart Syndrome in Bighamton, New York yet my parents wanted a second opinion and I was transferred again to another hospital a couple hours away in Syracuse, New York. The diagnosis was confirmed in Syracuse and my parents were faced with three choices of action. The three choices the doctors gave were a heart transplant, compassionate care, or an experimental three step procedure called, the Norwood procedure. Doctors urged my parents to go the route of compassionate care because I would never live a normal life let alone be able to walk a block without oxygen and if it had been their child they would ultimately proceed with compassionate care. Doctors had also told my parents that they hadn't heard of anyone doing well with the Norwood and would not suggest it. Through a lot of discussions and prayer my parents chose to go to Childrens Hospital of Philadelphia and have me undergo the Norwood procedure. I was flown directly to CHOP and underwent my first surgery a few days later at 11 days old by Dr. Marshall Jacobs. I went through the first procedure perfectly and proceeded onto the second stage at 7 months old and then finally the Fontan at 13 months. Aside from fighting pleural effusions for 2 1/2 months following the fontan, all three precedures were completed with minimal issues. My parents had thought they were done with having to watch me undergo surgery, but around the age of 2 1/2 my mom took me to the doctors for what she thought was a cough but was actually congestive heart failure. I was rushed to CHOP where I underwent a fourth surgery to open my ASD.


By the age of 3 1/2 I was as healthy as I could be and started regularly going to the dance studio that my mom worked at. Every time I was there I would always asked her if I could go to where the mats were and do flips. After persistently asking her to let me flip around on mats she signed me up for a gymnastics class and I fell in love. My parents stayed in close contact with my surgeon to make sure that everything I was doing was okay. He had told them that I would set my own limitations and to let me do whatever I wanted to do. From there on out, my life revolved around gymnastics and pushing the limits of everything I did.

By the age of 7, I was training 20 hours per week in the gym . Some days I was even in the gym twice, for morning workouts and afternoon workouts. I continued with gymnastics until I was 16 and got too injured to continue. I had multiple fractures in both my shins and if I were to continue at the level I was at, I would need surgery on a few different injuries on my body. It was devastating to me, to have what I felt was everything taken away. I then turned to high school sports because I was very competitive and needed to be involved in something else. I took on high school varsity soccer, winter ski racing and track. Nothing ever compared to gymnastics but my body just couldn't handle it anymore.

Now, I am 21 and a junior at University of Cincinnati. I am studying Biomedical genetics. I have had zero problems with my heart and am just on a baby aspirin every day. I do not have a pace maker and just go to the doctors for yearly check ups. However, when I do get sick I usually end up at the doctors quicker than any one else would. I have no clue what the future holds and it scares the crap out of me sometimes because I live such a normal life that my heart feels like something my parents made up when I was younger. But dont get me wrong, it really can be scary being one of the oldest and feeling almost like a lab rat because no one knows what is going to happen. I just take it year by year and so far everything has been perfect. I look forward to having a family- which the doctors told me that I am allowed to have kids!! I am ready to get done with school and start the rest of my life :)

 

Follow Meghan at http://www.facebook.com/pages/Meghan-Roswick-HLHS/175236095914052

 

 

February 12: Heart baby #6: Meet Mighty Maverick

 

Meet Mighty Maverick

A Story from a mother's eyes:

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 apartment was scheduled for the afternoon. After waiting in the waiting room for what felt like an eternity we were called back. A 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 29th. 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.

Follow Maverick's progress at: http://www.facebook.com/groups/Mavericksmightyheart/

February 11: Heart Baby # 5: Meet Little Angel Kennedy

 

Meet Little Angel Kennedy

 

My mommy and daddy went to a routine sonogram at the end of the first trimester and they found what they thought has a white dot on my heart which normally is a sign of Down syndrome.  A second Dr took a look and said no it wasn't, but mommy and daddy would need to go see Dr. Bhat at A.I. DuPont Children's Hospital. He is a cardiologist and he told my parents it wasn't Down syndrome; that white dot the previous doctors thought they saw was where my left ventricle should be.  I had HLHS, Hypoplastic Left Heart Syndrome.

My mommy and daddy were given the options and chose a three part surgeries for me; their little angel.  They knew it was gonna be along hard road, but when they met with everyone that was gonna take care of me not to mention all the prayer surrounding my parents and I they knew it would be alright . I was born on May 3, 2012.  I have under gone three heart surgeries and both my diaphragms have been tacked down.  I also have a G-tube and a Nissen fonduplacation.  I am just went through the second of the 3 surgeries for HLHS, the Hemi Fontan (Glenn).  I was recently released, but I am now back in the hospital due to a fever.  Please pray for me, I want to go home and spend time with my family.  My mommy and daddy call me their little angel because I fight so hard and I will never give up.

February 10: Heart baby 4: Meet Miracle Mason

Meet Miracle Mason

This story is very dear to my heart because I have been friends with Mason's mom, Meagan since we were little kids. I have followed this little boy and all his journeys. He is such a happy boy and brings so much joy to those who know him.

Mason's Story:
My mommy and daddy were so excited to meet me, baby number 2. At the 20 weeks ultrasound their world was shattered. I was not ok, I was far from it. I had a congenital heart defect, cystic hygroma, and down syndrome. Mommy says all she saw was a black mass as my heart, no chambers, but a small chamber. The doctors told my parents I would not survive, in fact they had never seen a child with all three defects survive. They were told to wait I would pass in utero soon. What the doctors didn't know was I was special, a true miracle from God. Mommy and daddy were devastated and looked at the realities and started to prepare for my death.

I was born on April 22, 2011. The doctors gave my parents statistics and I had a 3% chance of survival. I wasn't going down without a fight. I beat the silly statistics! I wanted to meet my family and make memories with them.

The first year of my life I went through heart failure, open heart surgery, therapies, dairy allergies, and much more. It was a challenge for my parents, but they went through it with me and fought for me gracefully.

I am now 22 months old and doing wonderfully. I love playing with my big brother, Colby and am excited to meet my new sibling soon.

Please follow my mommy's blog and my facebook page
www.prayersformason.blogspot.com
www.facebook.com/pages/Prayers-for-Mason

 

 

February 9: Heart Baby #3: Meet Teagan

 

Meet Little Miss Teagan

 

 

Early January 2012 mommy and daddy learned they were pregnant with their 8th blessing; ME.  They were excited to finally see me at the 19 week ultrasound.  My whole family gathered in the room to see the newest addition and bet on the gender. Mommy noticed immediately what was there, or not there for that matter, and smiled realizing I woudl be a girl. This made my family even, 4 boys and 4 girls.  My mommy also thought she only saw three chambers of my tinny fragile heart, which seemed odd to her that she noticed that, but with how many ultrasounds mommy and daddy have had over the years she knew what she saw. The OB confirmed, something was wrong. Ten of the longest days of my family's life and a level 2 ultrasound by a fetal cardiologist and they had their confirmation.  Me, their sweet baby girl, had a heart that had not developed on the left side the way it needed to.  I would be born with what amounts to half a functioning heart. I had HLHS, Hypoplastic Left Heart Syndrome.  I would need three open heart surgeries to even have a chance to live and there were certainly no guarantees.  My mommy and daddy smiled and thanked God for their baby girl and my life. They prayed in the hallway after the diagnosis and thanked the doctor for the information.

June came and my family had a celebration for me, their wee little warrior.  Surrounded by friends and family, they focused all of their energy into fighting for me, their daughter, lining up the best doctors and surgeons for me that were within their reach, and arming themselves with knowledge to face what they had to directly after I entered the world.  My mommy and daddy trusted in God and didn't stress through the pregnancy.  They smiled a lot, they lived a little more knowing that their world was soon to be forever changed, and they kept their eyes on Jesus.  I was made just the way He intended.  My family's smiles and demeanor baffled the cardiologist. That would continue well into my journey, as my family's smiles have rarely wavered.

August 19, 2012, 5 weeks early, I, Teagan Kelly Zeitler, came in this world kicking and screaming, all 5 lb 12 oz of me. Mommy says I was gorgeous and feisty from the start. She was able to hold me for a whole 60 seconds before they wisked me away to the children's hospital to stabilize and treat me. The first of my three surgeries would be in five days.  My family kept focus and smiled and thanked God for His favor on them.

I quickly began to struggle due to my anatomy.  My lungs got too much blood for how my heart was constructed and I quickly ended up with collapsed lungs.  Surgery was postponed and I had to be out on a ventilator.  My family was devastated, but they held onto hope and the peace that passes all undestanding.   Days passed and I was clearly not strong enough for surgery and soon became septic, meaning I had an infection in my blood racing throughout my entire body. If there was something that could go wrong it did. I kept getting sicker, not stronger.  My parents continued to smile through the storms, and thank God.

At three weeks old, the time came where something had to be done or they would risk losing me, their girl. I appeared to have beat the infection, but the doctors were not 100% sure. The doctors wanted a few more days to be sure, but there was not that kind of time.  I was born with a VSD, a heart defect that was actually allowing blood to flow in such a way that it was helping me, but that had started to close and the doctors had to go in now.  My mommy and daddy were so strong; they smiled and thanked God for providing such a skilled team of doctors treating their fragile baby.

I received my first open heart surgery, called the Norwood, and from a cardiac standpoint flew through it. For many weeks after I clawed my way to health. I battled numerous setbacks, including collapsed lungs, damaged lymphatic ducts, and intense gastrointestinal issues.  I also received new diagnosis of Turner Syndrome, horseshoe kidney, and failure to thrive. After a long 3 months, I finally came home to my family..

I have had 3 more hospital visits, for the basic cold (something that can kill babies with heart defects), non-stop unexplained vomiting, and a terribly failed attempt to place a specialized feeding tube. It has been a long hard road; my mommy and daddy know I may be their little fragile girl, but I am a fighter.

Friday, February 1 I received the second of the three stage series of the open heart surgeries, the Glenn. I continue to recover at our local children’s hospital.  Please continue to pray for me because there is a bit of fluid around my lungs and I just want to get healthy so I can go home with my mommy, daddy, brothers and sisters. 

Through it all my family has seen God's hand present in every step of my short, but powerful life. He has moved thousands through my journey which they have chosen to share via Facebook.  I have shown my parents what true strength is and has been worth every bit of struggle through the difficult days.  They continue still to smile, and even more abundantly today thanking God for His gift of every day He gives them with me.

 

Follow my story and progress at:

http://hisbountifulharvest.blogspot.com/

http://www.facebook.com/home.php#!/TeamTeaganHLHS

 

 

 

Feruary 8: Heart baby #2: Meet Super Sawyer

 

Super Sawyer and his Super Power; Prayer

 

When Mommy was pregnant with me, She got a call at work. It was the OB office saying they were sending her to a specialist for a diagnostic ultrasound because they thought something was wrong with me. Her and Daddy worried and had no clue what it was, but they soon found out I had a cleft lip. They prepared, got the special bottles, found a surgeon, etc. They prayed for healing still.
When I was born mommy says I was PERFECT! Cleft and all because I was unique and special. Just perfectly fashioned by God himself. The pediatrician was in the delivery room and wasn't comfortable with my ashy grey tone. He said he would stay with me overnight in the nursery and keep a watch on me. Overnight I had trouble keeping my oxygen up and the peditrician heard my heart murmur. I was transferred to Children's in Knoxville for further testing. When mommy amd daddy arrived shortly after, they were taken to a room where the doctors laid on the news. They knew of I had a severe cleft lip and palate.... the doctors told my parents I was deaf, and blind. Still thinking all is well until they then told mommy and daddy about my heart. My heart didn't develop fully leaving me with a working left side, but a right side that was so small it had no function. I only had half a heart. They talked of surgeries, but soon refused to do any because of how fragile I was. They told my mommy and daddy they believed I had Trisomy 13 which they said would give me 3 months to a year. However, without surgery... I would die from heart failure in 3 days.  The doctors didn't realize my God was much stronger than their silly statistics.

Mommy and Daddy wouldn't give up on me.  They prayed to God and watched as He worked wonders. I had 2 holes in my heart as well. One should have closed itself shortly after birth. It was giving just enough blood to my lungs and once it closed I would decline fast, or so the doctors said. Guess what though, IT STAYED OPEN. The test results were coming in one by one. Not deaf, vision would be limited, but not blind, Negative for T13!!! A few days past with me hanging tight... until I did start to decline, the hole was starting to close. It stayed open just long enough for me to be flown to Vanderbilt.

I had his first heart surgery at 2 weeks old. The following night, my heart stopped beating. Mommy and daddy were in a consult room while they were doing CPR on me for almost 30 minutes. Mommy sent one text message to my grandma. Telling her my heart had stopped to call everyone wake them up and have them pray. Not long after my heart was beating again.  I couldn't see my mommy and daddy just yet.  I was critical and the CPR had opened my chest wound from surgery so I needed to be closed back up. My parents were sent down the hall to a sleep room. No sooner than they arrived, the phone rang. My heart had stopped again. The team had about called it... then out of no where.... a heart beat. Faint, but steady. God gave mommy and daddy peace and they were able to sleep. The next day I was pretty bruised up from compressions. It took me a while, but slowly I recovered and the tubes and wires were all removed. I was FREE!  I was able to go home the day before I was a month old.  I was excited to see my home and spend time with my mommy and daddy!

I had my 2nd heart surgery at around 4 months. Followed by a Nissen Fundoplication and Gtube surgery as soon as I recovered 2 weeks later. I had my first lip repair at 1 year with ear tubes also placed, my palate at 16 months, I had my nose and sinus surgery at age 2.  My eyes are also underdeveloped; my right eye is completely blind and so small I had a prosthetic eye to fill the empty space so my bone structure will grow normally. My left eye is legally blind and also has a coloboma.
I am proof prayer works!

 I have a long road ahead of me still so please follow my story http://www.facebook.com/teamsupersawyer

Update on Christian: Febuary 8

Wednesday, January 30, we had our first follow up cardiologist appointment.  Everything looked great, except while we were there Christian had a poop that had blood in it.  Dr. Bhat told us if it continued to call 2B (cardiologist floor) and let them know we were headed to the ER.  He also sent for us to get blood work at the local hospital, Kent General. Well Thursday he did not have any blood until the evening, 2 bloody stools back to back we decided to call before we drove up and ask what they thought.  Of course they told us to come in.  We packed our bags bc we didn't know if we would be admitted. The ER doctors did no test and simply told me to watch what I ate and decrease my dairy intake.  I was a little bit frustrated.  Friday Dr. Bhat's assistant called us and told us the blood Kent had taken cloted and the test were not able to be read.  Monday rolled around and I called Dr. Bhat's office to get another referral to go get blood work, the nurse asked if Christian was still having blood in his stool.  He was so she wanted to call Dr. Bhat to see if instead of going back to Kent to get the blood work if we should just come up to A. I. Dupont.  Well Dr. Bhat decided it would be best to go ack to the ER.  5 Hours later they decided to admit us because they thought Christian had a milk allergy and wanted to monitor him on a new formula.  He would no longer be getting breast milk mixed with Similac.  Well I was a little frustrated because the cardiologist on call was going to send us home, but the ER doctor swayed him other wise.  I understand my son is special and they are more inclined to keep us , but it really was unnecessary.  They wanted to watch him on a new formula that is predigested.  Here is the kicker, they did not feed him until we got up to 2B.  He missed his feeding at 6 and then was an hour late on his continuous feed starting at 9.  Not only was this an issue, but they wanted to watch him on the new formula that he would be getting now, the problem was they did not have it and told the cardio floor we did.  So the point of us staying was to watch him on this new formula which they did not have, so Christian got a different formula.  I was not happy.  We then did not get discharged until 2 pm the next day because they had to track down this formula.  Oh they also wanted us to stay so that we could se the G.I. doctor which we did not see because they could not get us in.  We are home now and everything is going well.  No more bloody stools and Christian is happy.  We had pictures taken of just him and then Family pictures as well.  We can not wait to see them.  We also have a video shoot for the hospitals wellness network so that other parents can see what it is like in the CICU.  We are very excited to get to share our story. 

Christian also had a development assessment and he is doing well.  His neck muscles and holding his head up is a little delayed, but that is it.  I am so proud of my little nugget.  We continue to praise God for the miracle He has blessed us with, because that is what Christian is; SIMPLY A MIRACLE.

CHD baby #1 February 7: Meet Paislyn.....

The Sassy Little Paislyn Nicole

Hi my name is Paislyn Nicole Metzger. I was born on August 24th 2010, when my mommy was 38 weeks. Mommy and Daddy were so EXCITED to meet their Healthy and beautiful baby girl. I was 5 lbs 15 oz and mommy says I was the most beautiful thing she had ever seen.... however I was not as "healthy" as they thought. No one had any idea before I was born that I had any issues at all. I was about 14 hours old when the Doctor told my mommy and daddy "something" was going on with me and they needed to send us to a bigger hospital ASAP. So off we went..... while we were there we learned "the news" that broke my parent's hearts. Me, their sweet baby girl, who looked PERFECT.... only had half of a working heart. I have HypoPlastic Right Heart Syndrome. At this point my mommy and daddy's minds were a blur hearing the words, 3 open heart surgeries, chest cut open, ivs, meds, it was all TOO much to handle! They just looked at me, their 5lb little lady. Well I wanted to prove to mommy and daddy I would be ok so I was eating great and being a rockstar. Jesus was helping me and keeping me strong, while my parent's and many others continued to pray. we were released to go home 3 days later. Now we went home with the instructions for mommy and daddy to watch my breathing and make sure I was eating enough so I could grow bigger before my first surgery. Mommy and daddy were a wreck; to new parents, getting the instructions to watch your child's breathing is insanely nerve wrecking! But they did it all night long every night mommy watched me, her sweet little girl, breathe. I was about 2 weeks old when I started having trouble breathing and I started GASPING for breath. It was the scariest moment of my parent's life and we rushed to our local Emergency Room. From there I was rushed by ambulance to a bigger hospital once again. I stayed in the ICU for 2 weeks at Toledo Children's Hospital. Those 2 weeks were so up and down, but mostly DOWN...... It was at that point the doctors came into my ICU room and told my mommy they needed to talk to her and daddy. It wasn't a good sign. They were not allowed to hold or touch me anymore, they had a crash cart outside of my room, and told my parents "there would be no point sending me to a different hospital to do my first open heart surgery because I would NOT survive. Words can not begin to express the pain my parents felt. Their world was shattering around them. However what these Doctors didn't know is that my mommy and daddy serve an AMAZING, MERCIFUL GOD who was with me and made me in HIS image and I was HIS child. He was with me and my parents every step of the way! 3 days later, guess what happened, I was transferred to University of Michigan Hospital where I underwent her 1st Open Heart Surgery (the Norwood) at almost 6 weeks old. Guess what else....yep I sailed through the PICU and the floor like a champ, I was eating wonderfully and we went home 10 days later, with NO feeding tubes at all! God protected my parent's little girl and they know I am a fighter. I got to go home and play and eat, and eat and eat some more to get me nice and big for my 2nd open heart surgery. I had my 2nd open heart surgery at 7 months old and although leading up to it was awful and scary for my mommy and daddy, we went home 5 days after my surgery! Again all the glory goes to our Heavenly Father! I am now 2 and 1/2 years old and I am simply AMAZING! I know all my colors, I can spell my name since before I was 2, I can count to 10, I know my shapes and I am ACTIVE as any 2 year old, I keep my mommy busy! Mommy says I truly am a miracle and so amazing! I am sassy, spunky, pretty incredible, loving and funny! Mommy tells me all the time that I complete her life and there is definitely something special about me. However, my oxygen levels are at about 81%, I start to breathe hard when I play, but I know when to stop to rest. I look at mommy and say " mommy me take a deep breath." I am now approaching my 3rd and final open heart surgery. To think about it makes my mommy feel sick inside, but she knows that it is necessary for me to live a long healthy life. I will rock it just like I have the past two! My 3rd surgery will probably be the first week of April this year so please keep me and my family in your prayers! Mommy is so amazed what these doctors can do with my tiny little heart, but also amazed and thankful for what God can do!!

Feel free to follow my story at
paislyn-littlemissmiracle.blogspot.com

 

 

1st Surgery

 

2nd Surgery

 

2nd Surgery

 

Spunky little 2 year old

 

True Miracle

CHD Awareness Week Feb. 7-14

During this week of congenital heart defect awareness I will be posting a story of a heart baby that I have followed and have grown very fond of. Please educate yourself on CHD. They are the number 1 defect children are born with. They kill more infants than every childhood cancer combined. 1 in 100 babies will be affected with a CHD. Please share Christian's blog so people will be more aware. Thanks!