HAPPY BIRTHDAY TO SUPERMAN!

WOW a year ago I was getting ready to push as Hunter, my father-in-law, mom, dad, and I anxiously waited to meet our little miracle.  There was so much known. Up until this point I was able to keep Christian safe, but after he was born, I no longer could protect him.  He came out within 15 minutes and was perfect.  I loved him so much as soon as I saw him. I could not imagine a life without him in it. The realization set in that I might not get to watch him grow up.  Christian was immediately taken 30 miles away to a different hospital.  So I got to meet this amazing little person and then he was taken away from me.  It was awful.  I remember crying myself to sleep that night. I was so worried.  I wanted him to be healthy.  I remember that night like it was yesterday.  My mom was sleeping on a pullout bed in my recovery room. I couldn’t sleep, I laid there crying and pleading with God.  I wanted Christian to be completely healed.  It was so hard being away from someone you carried for 9 months.  I briefly got to hold him before he was swept up to the ICU before being transported, but that brief minute wasn’t enough.  It was heartbreaking.

In one year I have never felt so much pain, frustration, and exhaustion as I did this past year, but I have also never felt so much love, joy, or complete happiness.  This year was known, we did not know if we would even get to celebrate a 1^st birthday.  Now Christian is 1 and I am just in awe of where the year went. It has been such a whirlwind.  We have had ups and we have had downs, but this little one year old has taught me more in one year than I have learned in my 28 ½ years of life.  I have learned that things can always be worse. I have learned that children are resilient. I have learned that I can be strong, especially if strong is the only option I have. I have learned that God has a plan even if it is not exactly the plan I would want, His plan is so much better.  I have learned that when given trials, it is not until we completely give it to God that He will intervene.  Sometimes He makes us hit rock bottom so that we realize we need him to lift us out. 

I get to be the mother to a superhero.  Christian has been through so much in 1 short year than many have been in their lifetime, but that has not changed him a bit.  He is a little amazing miracle that brings joy and happiness, not just to his family, but to many others that follow his story.  He has a personality that can melt the heart of the Grinch.  He is amazing which does not even begin to describe just how wonderful this little boy is. 

During this holiday season remember it is not the presents or getting the best deals.  It is about being with family and enjoying every minute with them. Don’t look at the negative, instead count your blessings.  Remember God has a plan for your life just like He did for Christian.

 

HAPPY BIRTHDAY CHRISTIAN MATTHEW!!!! WE LOVE YOU MORE THAN YOU WILL EVER KNOW!

A year ago today.........................

Today marks a year ago that our world was turned upside down.  Thinking back I can still remember the emotions I felt; the emptiness, the helplessness, the complete devastation.  The perfect healthy child I was carrying for 37 weeks was all of a sudden missing half of his heart?!  How was this missed? I remember coming home and staring at the wall just crying.  I wanted to wake up, after all this was a nightmare, it was not real. I remember thinking back on every single thing I had done during my pregnancy, was it something I did?  Was it something I had done in my life and I was being punished?  Why us, why my baby boy?  The whys set is, and the research started. The joy we were supposed to feel was gone, no longer did we feel happiness, we felt sadness, fear, and were just numb.  It was the day that would forever change my life.  I never would have imagined one of the worst days would turn out to give us such a blessing.  I thought God had left me alone and that He was punishing me.  God only gave me a trial that made me realize how strong HE could make me.  What a difference a year makes…….

 

November 12, 2012

 

November 12, 2013

 

Every storm ends with a rainbow......

In this crazy life we are given tests, challenges, trials, etc. we are not given these because we are being punished, but because it is part of a bigger picture. Not just a picture, but a masterpiece. A masterpiece that God himself has painted for each one of us.

When we first found out about Christian I thought of every possible thing God could be punishing me for. Then BAM! I didn't think it could get worse and it did, the words heart transplant escaped the doctors mouth. What did I do, God? There is no way I deserve this, my son is innocent how can You do this to him. The rain kept falling on my little family and lightning kept striking. I saw no happy ending. I saw darkness. I saw pain. I saw hopelessness. I have never felt so alone as I did during the first few weeks of Christian's life. I was in this hurricane of a storm and where was God. No where to be found, He abandoned me. 

Here is the thing about God, He never abandons you. He will walk beside you, but you have to call out to Him, trust Him, and believe this is In His control. He will carry you through the storm, if you let him, but you must call out to Him. God never abandoned me, He needed me to put my full faith in His bigger picture. In His masterpiece. See God is still painting my masterpiece and I needed to realize that. It wasn't until I called out to Him that I needed a miracle that He preformed one. Each day the rain let up and the storm died down. Christian is progressing and rocking his half of a heart. He is my rainbow that came from my storm. He inspires me daily. What we went through was hard, it emotionally and physically took a toll, but the huge storm we endured gave us the prettiest rainbow. 

I encourage you when you have challenges, trials, test, not to ask the whys, but to trust that God is painting a masterpiece, your masterpiece. I promise that every bad thing we go through has a purpose and a plan for the overall big picture God has for your life. It isn't until you completely put your trust in God though, that He can give you a rainbow from your storm and finish painting your masterpiece. 

Life is too short...

This past week I was reminded just how precious life is. The Lord says that we are not promised tomorrow. So then why do we sweat the small stuff? I believe society has pushed this view of the "perfect and acceptable" life on us. They show us the perfectly groomed Kate and William  with baby George just days after having the baby, they show us young celeb moms that have the latest fashion and look fantastic every minute of every day. We have to have our house spotless and in order in case company comes over, wear our Sunday best with makeup everywhere we go and even if we are at home, we must have balanced meals made and ready for breakfast, lunch, and dinner. Our kids must be groomed and well mannered at every moment. News flash they have stylist, nannies, personal trainers and maids! Want to know what I figured out this week....NONE OF THAT MATTERS anyway. When we are sitting here worrying about what society and these celebrities have made the norm, we are missing out on life. So what if your house is a little cluttered, and you are wearing the same comfy pants you have worn the past 3 days. You know what, it is ok as long as you are spending time with your kids and making wonderful memories. 

There was a Air Force mother who's son was murdered while she was deployed. She had to come back to the states to decide to take her 18 month old child off of life support because the people she thought were responsible friends, turned out to be vicious child abusers. Sadly justice still has not been served for little Evan. 

The point is that none of us, young, old, or in between are guaranteed tomorrow. Enjoy the moments you have with your family especially your kids. There are many moms who would kill for a messy house full of laughing children. Instead of teaching your children to be perfect, teach them to love deeply, forgive quickly, and enjoy the life God has given them. Life is just too short to worry about small insignificant stuff. So go out and live! Make memories! 

Feeling lonely

Another heart mom post recently that she has felt as though everyone who was once close to her has left her high and dry because of her son's Heart. It sadly hit too close to home. Family has been awesome. My parents come up here quit often and have not "forgotten" about us. However, we live 1500 miles from our families so the friends we make in the military have come to compensate for the times our family isn't here, which is 90% of the time. Slowly our friends have seemed to drop away.  I know a lot don't know how to act. I have had numerous people say they are scared. It hurts because we no longer get invites to friends we were once close with or phone calls updating us on the recent good news they have or any news for that matter. Instead we find out via facebook. I know it goes both ways and with Christian's appointments I get busy, but I do text back. After hanging with a baby all day I do like adult interaction :) 

People don't know what to say or how to act so they just ignore us. Cut us out of their lives because of our reality we live with daily. I just pray that for the ones that have cut us out, simply because you do not have to be reminded of what we go through daily, that you never have to go through a struggle like ours without support. Yes, our story is a hard one to swallow. It is a reality that EVERY PARENT has the chance of living. Your perfectly healthy child could have been born with HLHS! Instead of being scared and/or close minded, I encourage you to research it. It isn't the plague and although we do have to be extra careful with Christian, we still get out and do stuff. Sometimes we won't because he is sick or someone else was sick recently and we don't want him catching it. 

Just because we went through hell and back doesn't mean we wouldn't be there for you either. Even if it is to be an ear to listen to. Truly is sad we have lost friends over our son having a defect, but we have gained some pretty awesome ones too. I love my new heart mama friends that are able to relate and talk with. Anyway that was my rant. Just be careful when you abandon friends that are going through trials, because what goes around.....

Silence is GOLDEN

Being a mother to a special little boy has been nothing short of a blessing. Although it has caused lots of heartache and disappointment, it also has renewed my faith that our God is a God of miracles and that His purpose for our life is grand. Now although I understand this, it was not something I needed to hear daily from people that were not going through or had gone through my circumstance or one similar.  So I have thought about it for a week or so debating on if I should even post, but I feel like some people need to learn when silence is golden. I know people mean well and they want to give their support and encouragement, but sometimes it does not come across that way.  Always think before you speak. These are all things that have been said to me. So here are things you NEVER say to a parent of a Congenital Heart Defect child…..

 

1.      “It is God’s plan.” Although yes, I am a firm believer that God has a plan and purpose for our lives and He puts us through certain situations in order to guide us to His perfect plan for our life; it is not something you EVER say to a parent with a CHD child. As a CHD parent is watching their child in pain with tubes and wires coming from every part of their body the last thing they want to hear from someone that has never experienced that kind of heartache is, “Well it is God’s plan.” Trust me it makes you want to hit someone. Although yes, in the back of our mind we know that God is in control, it doesn’t mean that it is any easier watching our child suffer.  When we found out that Christian needed a heart transplant I hated God. I hated Him for making my husband and I experience such grief and for not performing a complete miracle on Christian’s heart.  God never left me though. He took my hate and remained by my side until I called out to Him. So allow the parent to understand that God has a purpose for the trial they are going through without putting in your 2 cents.

 

2.      “Well it could be worse.” I mean seriously?! Why would you say this especially if you have a perfectly healthy child?  I do understand yes, my circumstance could be worse, it can always be worse, but don’t say that to me.  We were talking about funeral arrangements when we found out about Christian needing a transplant, now can you honestly tell me your first thought would be oh well it could be worse, NO!

 

3.      “Well at least you don’t have to go through the newborn stage.” Um yes, because I would much rather have my child’s chest ripped open then have to deal with the first tar like poop, sleepless nights, crying etc. I think any of my CHD parents can agree we would rather have our child not sleep through the night than have to undergo open heart surgery.

 

4.      “God only gives you what you can handle.” This statement is 100% false. We are given circumstances all the time that we as humans are not capable of handling by ourselves. God gives us trial so that we call out to Him for his guidance and help.  I would not have survived emotionally or mentally if I had not sought after God and asked for His peace.

 

5.      “Are you worried you might have another child with a defect?” Did you know that the defect Christian has, HLHS, has no links to what causes it.  The heart’s cells just stop forming and developing.  They have no idea what causes it.  So the chance of you having a child with a CHD is the same chance as us having another child with a CHD.  This also implies that my child is something of a burden and why would we put ourselves through it again. My child has made me love deeper and more fully than I ever thought I could for another person. It is not that I think my love is stronger for my child then your love is for your healthy child; it is that I have literally had to fight for my child’s life so it is a different kind of love. Although I pray we have healthy children because of the suffering Christian has endured in just the short 8 months of life, if God chooses to give us another child with a CHD we will fight for that child as well.

 

6.      “Will he be normal?” Although he will have challenges that children with whole hearts won’t he is normal. Yes we have precautions that we will need to take and that have been taken to ensure the safety of Christian, but he isn’t the plague. He will make his own limitations.  There is a girl that I have been following that is in her 20’s with HLHS and she ran track, did gymnastics, skis, and goes on roller coasters. She sets her own limitations and pushes maybe a bit more than some parent’s would allow their child with CHD, but I want to encourage Christian that he can do anything he sets his mind to like Megan has.  Yes, Christian will always be followed by a cardiologist, but that doesn’t mean he cannot live a normal life.

 

7.      “I wouldn’t have put myself through what you are going through.” You are implying I should have aborted my child? What makes my child’s life any less valuable than your healthy child’s life? We found out about Christian’s heart at 37 weeks, however, I would not have changed my mind to have him even if we would have found out earlier.  I feel sorry for you that you do not value human life or have trust in God. I have experienced the deepest heartache possible, but I have also experienced the most joy. When you say this you imply that a CHD child’s life is not precious and that you are not willing to fight for it. It is ignorant and very hurtful to say this to a CHD parent.

 

8.      “I’m so sorry.” My child has half a heart, he didn’t die. I never really knew how to respond when someone would offer these words.  I understand you are sorry that we have to endure the struggle that we do, but it does come across more negative than positive. Instead say you are there for whatever is needed. Offer help instead of offering your condolences.

 

9.      “Could he die?” This is very insensitive. More children die from CHDs than all childhood cancers combined. For my husband and I we enjoy each moment we have with Christian and do not think about the possibilities. I do not look up statistics. If I did I would not enjoy my child instead I would be worried about him constantly. Anybody can die at any point. We are not promised tomorrow; NONE of us are.

 

10.  “Could it have been prevented?” This is implying this was in some way my fault for my son’s condition. Like I stated before Christian’s specific heart defect has not been linked to anything, so it was the same odds for me to have an HLHS baby as it is yours. Putting guilt on parents like that is completely unnecessary. They have enough on their plate and probably already are thinking of everything they did during the pregnancy so they don’t need you to point fingers.

 

I know some people will find this post insensitive, but I find these things said to me very insensitive. Think before you speak and put yourself in the parent’s shoes. If you are not sure what to say, better just not to say anything. Remember sometimes the best thing to say is nothing at all. SILENCE IS GOLDEN.

 

Update on Christian: He is eating some food. I have been trying different food so that we can hopefully get his tube out soon.  He is not a fan of bottles, but we are receiving therapy now so hopefully it will improve.  He loves mini pancakes. He is also receiving physical therapy in order to catch him up on his movement development. We are just enjoying him and taking every moment in. He is such a happy little boy and we love him dearly. He truly is a little blessing!

Update 6-5-13

I have been bad about updating. A lot has gone on. While we were still in the hospital my grandma passed. We were released from the hospital May 20, only 11 days after Christian having his surgery. :) I then got a flight home to be at the funeral May 21. It was a whirlwind! Anyway, Christian is doing very well. His incision is healing nicely. They went back in the same incision from his previous surgeries and even the chest tube was inserted in the same scar.  The only new scars he has is little ones from his pacing wires ( they put these in all patients that just had major heart surgery as a precautionary measure). He will begin weekly physical and feeding therapy.  We were okayed to start feeding him by mouth! :) of course it is going to be a process and we will have to work up to him eating all his food by mouth and not his tube.  My goal is to get his g tube out before Christmas. He just continues to amaze us and bless us. He is an amazing little boy and Hunter and I are so blessed to be his parents.

Christian Was dedicated by Pastor Tony Evans via skype

We won first place on our shirts for march for babies

Christian loves his pups

Trying pineapple for the first time

This was Christian before surgery, still so happy

Daddy cuddles before his hemi Fontan procedure

Mommy snuggles

After surgery; during our hospital stay

DISCHARGED!!

Watching TV with daddy

Being a heart mom....

No one ever told me how to be a heart mom. Of course I had all my friends giving me advice on how to do certain things and what worked for them when raising their healthy normal child, but not once was there advice on how to care for a heart baby. During your pregnancy you try so hard to prepare, you read the books or other guides on how to care for yourself and your baby.  Here is the problem, you can never truly prepare.  The fact is you have to figure it all out on your own.  What works for one mom does not necessarily work for another. Then there is the chance that your baby may come out with an issue.

No one could have prepared me for how I would have to care for Christian.  I never thought that our routine would be centered around meds and feeding tubes, but this is our normal.  Our normal though is another person's nightmare. I have had people tell me they couldn't or they wouldn't do what Hunter and I do.  Trust me you would if it was your child.  It is heart breaking, but when my little miracle smiles or laughs at me it is worth every single tear and the heartache.  The answer would have never been to terminate the pregnancy.  I mean why would you terminate a sick child; because it is not convenient with your lifestyle? Well let me just tell you that this may not be "convenient" to what we expected, but our child is just as worth having life as a healthy baby.  Christian is a precious gift from God. He has made us feel more heartache then we ever thought possible, pushed us to our breaking point emotionally, but he has also renewed our faith, given us so much joy, and made us love deeper than we ever thought possible. He truly is our angel.

It is hard to see my child hurting. I hate seeing tubes in his chest and IVs coming out of every arm and leg. I hate knowing that he has a broken heart and there is no cure, only a temporary fix.  I hate knowing he will have to go through 3 open heart surgeries before the age of 3.  It is hard, but this is our normal.

I guess what I am getting at is next time you try to prepare for something ....DON'T. Put it in God's hands because when you do,that is when you will be truly blessed even if the blessing is in a disguise.

Day 2 post surgery

Christian remains doing very well. They would like to see him pee a bit more because he seems to be holding fluid in his face and chest.  We want this off immediately. He has been fairly awake today and has clearly been uncomfortable.  Pray for the Lord to comfort my sweet little boy since I am only able to do so much. I still have not got to hold him which is a killer. They said his chest tubes will be coming out tomorrow so maybe tomorrow i will get to hold my little miracle. He has been doing well overall though. They are very pleased with his progress. We are hoping to be on the recovery floor by Monday and home by Friday. :) Thank you for the continued prayers, love and support.

Super Christian does it again....

Christian received his second stage surgery May 9, 2013. He came through with flying colors.  There were no complications and they were very pleased.  He has been progressing well today post op. They have already removed the breathing tube, folly catheter, an IV, and he is no longer on morphine only Motrin and Tylenol for pain. He is moving right along and they are very pleased with his progress. We are hoping we will be on the recovery floor by Sunday or Monday.  He has opened his eyes for a little bit, but mostly sleeping. He has only fussed a handful of times.  Hunter and I are thrilled he is doing so well. We thank everyone for all the prayers. Our little miracle is proof that prayers work! <3

Update 4-17-13: uplifted yet discouraged

We are pleased to announce Christian's left vocal cord has healed. It closes 100% and opens 90%. The closing was what we are worried about since he aspirated into his lungs. The ENT doctor put in his recommendation to start trial feeding Christian. We will have to await another swallow test which at this point will probably be after his second open heart surgery. I have given him a little bit by bottle, but he is not thrilled since his taste buds are not use to having any taste.

We also had a cath lab to measure pressures of Christian's heart on April 9. He did great considering it was delayed 3 1/2 hours. It was a very long day. They found that his oxygen saturation in his blood is not as high as they would like so the surgery will be earlier than later. They are looking mid May, but we are still awaiting the phone call of an exact date. It is a phone call we are dreading.

We have been through the first, one down two more to go, but no one can prepare you to hand over your child to put his tiny life in the hands of God and the doctors. Sometimes I feel like a helpless mother. Gosh dang it I am suppose to be able to protect my child and I can't; not from this. My heart breaks. I want him to heal completely. I want to be able to give him my heart. I would gladly take his broken one so he would not have to feel an ounce more of pain or suffering. I am just discouraged and devastated. I feel defeated. I am terrified for the worst to happen. This is our reality!

Update 3-24-13

Christian is doing wonderful. He has progressed really well. He is still delayed with holding his head/chest up from laying on his stomach. Other than that he is right on track with his development. We have a development assessment with the hospital the end of April.

He has his first cath lab that will measure the pressures in his heart and determine when his next surgery will be. We are praying for end of May. We are not ready to hand over our baby again just yet. We also have an appointment April 3 to determine if Christian's left vocal cord has healed.

Hunter will be gone the month of April so I will be doing everything alone. I will have my mom here for a week to help with the appointments which will be a blessing.

No other updates besides the fact God continues to heal our little miracle. Please continue to pray. I still am praying for complete healing of his heart.

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