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!