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!

Wear Red for Christian

Tomorrow is wear red for CHD. To show your support for Christian wear red Friday, February 1. Take a picture and you can even hold a sign with something special to big boy and post it on http://www.facebook.com/groups/Christianmatthewssupermanheart/
We want to take the pictures and put in his scrap book to show how much he is loved. You can also email me pictures at ashly.pauley@yahoo.com. Put in the subject picture for Christian

Kicking it at home with mommy and daddy

     Well we have been home for 2 weeks now and I have to say it has been nothing short of amazing. They made us stay an extra night Monday, January 14 and I was beyond frustrated since we were planning on coming home that day. I do understand why we needed to stay; they had just taken Christian off his oxygen flow that morning and needed to monitor his vitals for 24 hours.  It should have been done over the previous weekend, but what I have learned is that nothing is done on the weekends because the doctors do not communicate with each other.  That was one thing we told in our survey that needed to be improved.  We honestly though could not have asked for a better and more caring staff to care for our little man. I really love A. I. Dupont and all the doctors and nurses that work there, but the communication among doctors was bad. He will be getting his button for his g tube this month. His left vocal cord is still paralyzed, there is not much change so we have another appointment with the ENT doctor in April.  He is also enrolled in a development watch program so that we can make sure he is on track with his development, both physical and cognitive.  Since he was in a bed for 7 weeks with little holding he is not holding his head up and is a bit behind. We will also be featured in the hospital wellness to help other parents going through heart surgeries. We are excited for this opportunity to share Christian's journey and the blessings God has given us. Hopefully we can bring a glimmer of hope in a challenging circumstance. Doctor Pizarro also asked us if Christian could be followed to help with other surgeons and diagnoses and procedures. Christian will be among several hundreds of cases, but It proves to me that he truly is a miracle because none of the doctors know what to make of his significant progress after being declared to need a transplant. I know it was my heavenly Father answering thousands upon thousands of prayers all around the world for our little superman. 
      Hunter and I can never express the gratitude we have for every one's prayers especially those from strangers.  The mere fact that people all around the world took interest in our sweet boy warms our heart. We pray that Christian can be a testimony to those with struggles. Sometimes the prayers are answered in a different way, and it may not be the way we want, but it is a way that is perfect in God's greater plans for our life.  I know my son is going to be a great testimony. I tell him everyday that he has to be great for God's plan and purpose in his life.  He is going to know the love of God every day of his life.  We will remind him of how God healed him.  Please continue to pray for strength and courage for our little boy as well as us.  Christian still has a long road ahead of him, but we continue to trust in God and his plan for our family.

Home Sweet Home

Hunter and I started to do Christian's feeds and medicine. He has done really well on feeding through the g-tube. Finally November 15, 2013 we were able to take our sweet boy home. He was 7 weeks old exactly. It was the best day!! He is enjoying getting familiar with everything. We had a bit of a rough night, but we think it was due to, not just new bed and surroundings, but he had not had a good BM. He finally gave us a good full diaper today and he seems much more content. We did have an appointment with ENT doctor yesterday and Christian's left vocal cord is still paralyzed. Please pray this corrects itself. Also pray for us, that God gives us wisdom in caring for our special boy. We continue to thank God for all the miracles he is doing with our superman.