Tagged: congential heart defect
Beauty in the Ashes
Hopeless to Hopeful: A Journey to a New Heart
I can remember four short years ago when my husband and I were searching for a house to buy. We looked for quite sometime and at times I would feel hopeless. We were looking for a small bungalo that we could make our own. We wanted a large yard and had picked out a few different school districts that we wanted to be in.
We spent over a year and half looking on and off. Until one morning we in our eyes struck gold. We noticed a house that had sat empty for sometime but was in a perfect location and had a wonderful backyard. I’ll never forget walking through the house with our realtor at the time. “You like this house?” my husbands mind racing I know this because he is a silent thinker paused: “yes, it has a lot of potential.”
We went home that night and kept looking at the pictures online and my husband began to come up with a list of idea’s of the variety of things he could do to fix up this little old farm house and make it our own.
God was on our side that Thanksgiving as we placed our bid and took a leap of faith buying a house that had all it’s copper plumbing cut out and stolen. We weren’t able to move in right away and we had a lot of work on our hands. With the help of a extremely loving and helpful family on both of our sides we started chipping away at our little old farm house.
first we stripped everything out of this house, demoed walls, drywalled, painted, put in hardwood floors, and new carpets. The upstairs bathroom looked like the color of boogers. We gutted each bathroom and remodeled those. We added a little barn off the garage for Dennis to use as a place where he could work on his carpentry projects. The outside needed a lot of TLC as well and each summer we work on something making improvements and creating it a place for our family.
Throughout this process we have learned a lot about patience, wise spending, and that although we want our house to be completed we need to remember what comes first in the hustle and bustle of life. I can remember on several occasions being a little angry that it wasn’t finished. Complaining to my husband and well being a bit of a demanding wife. I want this finished! It felt hopeless! Dennis always reminded me and still does that it will someday be finished but first and foremost is our relationship with God and secondly family.
“Therefore everyone who hears these words of mine and puts them into practice is like a wise man who built his house on the rock. The rain came down, the streams rose, and the winds blew and beat against that house, yet it did not fall, because it’s foundation on the rock. But everyone who hears these words of mine and does not put them into practice is like a foolish man who built his house on sand. The rain came down the streams rose and winds blew and beat against that house and it fell with a great crash. When Jesus finished saying these things, the crowds were amazed at his teaching, because he taught as one authority, and not as their teachers of the law.” Matthew 7:24-29
Dennis has shown me that life is not all about completing tasks but about the delicacy of family. I have never met a person who unconditionally at any moment will leave anything and everything he is doing to go help anyone who is calling on the telephone. He is an incredible example of how we should live our life out for Christ.
“Serve wholeheartedly, as if you were serving The Lord, not people because you know that The Lord will reward each one for whatever good they do, whether slave or free.” Ephesians 6:7-8
We have been cooped up in this little bungalo for six long months. Due to Angelina’s heart condition they recommended we keep her away from sickness to help keep her healthy for surgery. You can read more about our journey with our third daughter in these posts: Angelina’s Journey, Angelina’s Journey, Angelina’s Journey , Angelina’s Journey For almost SIX MONTHS. Yes, we have been COOPED up in this house. It’s been incredibly hard to put our life on hold and I have felt many days of hopelessness.
Until one day as I was sitting in my glider feeding Angelina God blessed me with a new way of thinking about this little bungalo. Angelina has impacted our lives in so many ways. This one particular way I thank her for. All that time I spent feeling hopeless and worrying about things that really aren’t to important in the scheme of things. After that moment it’s like my mind was cleared of this particular way of thinking and a rush of memories flood my mind as I perform the day to day tasks around this little bungalo.
The Simple Things. It’s a little trinket we have had our house for a long time. Dennis and I have always decided that we wanted to live our life out by this motto. Was it true because I know he had been doing it but had I?
Angelina had taught me to begin to learn how to appreciate the simple things in life. Instead of looking around our house and thinking man I wish our kitchen was finished and what the next task at hand is I see what life we have brought this little house.
Pictures filling the walls of Ava as a baby. She was only 18 months when we moved in here. Months later I would become pregnant with Amelia. Spaghetti fingers prints on our white wood work, scratches on the hardwood floor from Ava and Amelia riding their bikes around the house, memories of the long nights Dennis and I would work on the house together talking and enjoying being together, many wrestling matches with the girls before bed, daily squeals when someone is in the driveway for a visit, the pitter patter of tiny footprints on the hardwood floor, and diapers crunching as they headed downstairs in the morning, countless pots of spaghetti sauce splattered all over kitchen burners, packing the whole family and children in our little house for family get togethers, i can recall being in labor with Amelia as I walked thru our kitchen to dinning room and living room for 3-4 hours before heading to the hospital, stories read and craft time, the girls reminding me that it was time to workout, our chickens, campfires, and I could go on.
These things I hold so dear to my heart these days. This home has been a safe haven for us. I recall the day we got Angelina’s diagnosis and not being able to move from the couch, packing my bags the night before I was induced, fear, anxiety, and heart ace. I can remember how scared I was to bring her home for the first time in fear she would stop breathing, that I would screw up her medications, and that I would not be able to care for her.
I had many moments of feeling like I could not care for her in the beginning. Moments of “How Am I Going to Do This?” Moments of pure hopelessness. It’s as if our lives were in a snowglobe and instead of shaking it up someone has thrown the globe on the ground and the snow globe is completely turned upside down. Everything we once knew in life has been drastically changed.
I think how am I going to do this, God reminds me each time Michelle: “You are doing it and you are going to be ok.”
We have made it through an incredibly tough time in our lives. This little bungalo has become more then a home to me but the place that we are raising and nurturing our family.
The hopelessness I once felt about Angelina and our house being unfishined it has passed. I feel hopeful for the future. For the lives of all our children and what the good Lord has in store for all of us. Caring for Angelina has at times seemed overwhelming; we are doing it and she is thriving. I have a little pocket bible from my first stay at the hospital and I came across the definition of hope: “Confident expectation in the unseen future or happy expectation of good. Hope launches a positive outlook. Without it, lives remain fragmented and broken, personal dreams go unrealized and sick hearts loose capacity to cope. Hope tells you to hold on in anticipation and expectation-because good is just ahead.” -The Bible Promise Book for Women
I thank that little girl each day for the amazing things she has done in her short time on the earth. Relationships that have formed because of her, learning how to thrive in a season of challenge, enjoying the simple things this life has to offer through our relationship with Christ family, and friends. I thank her for bringing my brothers girlfriend into the family 🙂 (they met each other as she was Angelina’s nurse practitioner at the hospital), I thank her for helping me realize that our life is to short here on earth to feel hopeless and worry about things that we can’t even control. I thank her because each part our lives has been designed by Christ for our calling here on earth and to shape, form, and mold us to become more like him.
This last six months is only a very small part of Angelina’s life. A time that we will soon be able to reflect on and see how she has made us appreciate the simple things in life. When we say: “We aren’t really to sure how we made it through that segment of our lives, we are reminded, by the power of Jesus Christ.”
Angelina is about to start the next journey in her life. She will get her new heart on Monday May 5th. We are both excited and scared for this next part of her life to begin. Isn’t it crazy how we finally got comfortable right where we are and we are about to witness our daughter have a major surgery.
To our family, friends, church body who have abundantly taken care of us in ways that we can’t even bring to words your support never goes unoticed, ever.
My prayer this morning is for Angelina to have total healing in her heart and to continue to spread Hope to those around her and to a world full of brokeness.
“The Lord is my portion.” Says my soul, “Therefore I have hope in him.” The Lord is good to those who wait for him, to the person who seeks him. It is good that he waits silently for the salvation of The Lord”.
“Lamentations 3:24
Blessings, Michelle
Smiles and thriving in a season of challenge
I’ll never forget while our stay at the PICU as we left the hospital to get in our car one night we were able to see the air bear land on it’s landing pad. During our over stay at the hospital I had heard it take off multiple times and my husband had saw it land from our window at the Ronald McDonald house. On this particular night it really became real for me. This whole new realm of extremely ill children. I started kissing Ava and Amelia ten times more at night, praying constantly thanking God for such healthy children. We take it for granted, our children’s health. I stood watching as the hospital staff rushed out with a bed to get the Child off the helicopter.
Did you know that Akron Children’s is the home of the air bear the only pediatric helicopter in the state? No, I didn’t either.
It became real, sickness, heartace, and parents who have been through some of the toughest things they have ever endured in their lives. We have never been exposed to this world. The things that we used to worry about in life seem so minute in comparison to the things I have witnessed in the last 3 months. Would I change a thing, absolutely not.
I often have found myself during this time wanting to make it to the next land marker so to speak. When Angie was born it was (does she have downs syndrome, to oh I hope she can drink her bottle, to her gaining weight, then it was things will be so much easier at home, to I can’t wait to her next appointment(maybe we can have a surgery date in mind), to I hope she has the surgery as soon as possible, so we can start to move on).
I feel like I often have this mentality. Always wishing for the next thing, apparently the grass is always greener when X, Y, Z happens.
This past week we found out some news about Angelina’s heart that was heart wreching. Throughout this process she receives what is called an ECHO. It makes sure her heart is functioning proper with the defect, no leaking in her valves, and helps measure pressures in her heart. With the specific heart defect she has, they like if the babies can make it to have surgery between 4-6 months. They need to be between 8-10 pounds. The longer they wait the better, less risks, less chance for more surgeries down the road. When Angie was in the PICU they added in one more medication for her heart to try and help her heart function so they can prolong her surgery.
Angie’s last ECHO was showing that her heart was still functioning fine with the defect. (In time if the defect is not treated blood can flood the lungs causing permanent lung damage).The ECHO we had last week showed hypertrophy in her left ventricle. Hypertrophy is normal with this type of defect to some degree. Her’s is also moving up in to her septum. The heart a muscle can become enlarged and more muscly when a defect is occurring or it is not working properly. Just like our muscles in our body hypertropy(grow) when we lift weights. This can change the rhythm of the heart and block blood flow.The cardiologist told us that he has never seen this in the fourteen years he has been working with heart patients. He didn’t know if it was caused by her defect, which oftentimes is reversed after surgery or if it was something occurring genetically within her genetic make-up. What really caught him of guard was how fast it occurred between each ECHO. He went back and reviewed the previous ECHO and it wasn’t present.
He told me he was going to present Angie’s case to the 12 other cardiologists and surgeons on staff and call me back after they had a meeting of the minds.
I was sick, I mean when I look at her she is thriving. Eating well, growing slow but steady (it’s hard for them to gain given the amount of calories they burn while eating because the heart has to work extra hard). On I drove home, I was crying calling out to God don’t you dare take this child away from me.
SO, we waited for the phone call. Two days of wondering, analyzing, talking about the tough stuff again. I was enlightened, before I was just wanting to move to the next thing but I didn’t realize then we had a direct diagnosis and plan. It was way easier then moving on. Why can’t I just thrive in this season that I merely want to survive in? Why can’t I be content, with what God’s handed me from each moment to moment. WHY IS THIS SO UNBELIEVABLY HARD, if I could only count how many times I have cried out “GOD PLEASE TAKE THIS.”
The dr.told us that what is occurring one of the 12 other doctors have only seen one other time. Genetic testing needs to be done, because they think Angelina has a metabolic disease. Ya, don’t google it because it doesn’t help me understand it any better. Basically, this is how God has genetically engineered her. The Dr. told us that sometimes they have all the medicine in the world and can’t explain why things happen the way they do. He said that surgery might be completely out of the question because if it continues to grow the surgery might not even help. That the large hole in her heart will actually help them have some time to figure out what is causing this to occur.
I’m not sure how I have been able to move on from that phone call. This time I decided I am SO done wishing my life away. It’s not about survival anymore it’s about thriving. Using this season to grow, to embrace every single second with my children. To show my children the unabundant love of Christ.God has handed this to us for a reason and I refuse to merely survive. I want to glorify his name and thrive in a season that is so painstakingly hard.
I am striving for contentment. Praying that either the doctors find a different route or that on Tuesday her left ventricle hasn’t grown anymore and surgery is still on the table. We named this little girl Angelina Hope for a reason, to sprinkle hope to all of those around her. Hope to thrive when they merely want to just survive.
On Monday at approximately 9:35pm Angelina Hope lived up to her name. Words can’t describe what I felt that moment she looked directly into my eyes and gave me a grin. I can truly say their must have been an angel in the room because I just got a little glimpse of heaven. Then again on Tuesday, except this time it was a little laugh and giggle. She is still figuring out the whole smile thing, but I feel like it’s her way of saying: “hey mom, Jesus ya he’s got this, and just relax and enjoy the itty bitty stuffy you always have over looked.”
I came across this except from Billy Graham in my bible and God truly confirmed that it’s time to pray, wait, to be still, to thrive on what he is trying to teach, and to listen.
“No matter where we are, God is as close as a prayer. He is our support and strength. He will help us make our way up again from whatever depths we have fallen. We don’t consider that sometimes jesus is our strength simply to sit still.
“Be Still, and know that I am God.” Psalm 46:10
Our natural tendency when we have a painful happening in our lives is to go into action-do something. Sometimes it’s wiser to wait and just be still. The answers will come. … We may be sure that God is true to his word and answers all sincere prayers offered in the name of The Lord Jesus Christ. His answers may be yes, or it may be no, or it may be wait. If it is no or wait we cannot say that God has not answered our prayer. It simply means that the answer is different then we expected. When we pray for help in trouble, or for healing in sickness, or for deliverance in persecution, God may not give us what we ask for because that may not be his wise and loving will for us. He will answer our prayer in his own way, and he will not let us down in our hour of need.”
From Hope for the trouble heart By: Billy Graham
I know that God has a plan for little Angie’s life. I see alittle more of his plan as each day unravels and I praise him for finally helping me slowly learn contentment and to thrive in seasons of challenge.
“Not that I speak in regard to need, for I have learned whatever state I am in, to be content: I know how abased, and I know how to abound. Everywhere and in all things I have learned to be both full and hungery, both to abound and to suffer need. I can do all things through Christ who gives me strength.” Phillipians 4:11-13
I hope that if you are traveling through a tough season that you to can be still and know that you can do all things through Christ who gives you strength.
Blessings, Michelle
Coping mechanisms
I’ll never forget that cold snowy January morning. It was two short weeks ago but seems so vivid in my memory still. I told Dennis something seems off. Angelina didn’t seem herself. For two days on and off she was acting weird and not eating as well. The dr. Told us it would be a pattern of three days if Angelina were to go into heart failure at home.
I called the cardiologist and rushed Angie to the ER at Akron Children’s. They knew we were coming. The heart center gave them the heads up.
On my way to the hospital I can honestly say I didn’t know how bad it was. Missing my exit because of my nerves and Angie’s cries of distress in the backseat. She never had let out this type of cry.
Getting their I made the mistake of parking in the parking deck. I was on the total opposite end of the hospital. Racing the stairs with the car seat and running down the long tunnels to get to the ER.
The nurse took us directly back she took Angie’s vitals and looked nervous. She called the nurses right away. They took her back to a room. Two different nurses came and and I literally turned to take off my jacket and as I turned around they were all gone.
That moment for the rest of my life I can honestly say I’ll never forget it. Standing there helpless I lost it. A moment were I realized how fragile life really is. I had always knew God was in control. At this moment it became so tangibly real and heart felt.
Angelina was taken back to a room where if I could count maybe if not more 8 dr.s, respiratory therapists, nurses, and staff started accessing her. Big lights, fancy equipment, big terms, and a fast paced environment that would cause any mother to feel total terror.
I kept asking them: did I bring her soon enough, was it my fault, and telling them she has been doing so well at home. Do they get this bad this quick?
A dr. Came up to me and said: you did the right thing bringing her in. You didn’t do anything wrong. They called in a chaplain to offer me support.
Once stabilized and on a vent they took Angie up to the PICU. I forever will never forget my nurse that day. She was something special. I could not hold Angie and she was sedated on the vent. It was so hard to see her like that. My perspective on parents who have experienced this and have much sicker children then Angie had radically changed. My heart literally hurt as I would walk up and down the hallway seeing numerous children on vents.
Tests were done and it turned out that Angie was in acute respiratory failure that morning when we arrived at the hospital. The grunts we thought at first were her trying to poop were her protecting her airway. Crazy enough it was her way of surviving as her lung were filling up with fluid.
The vent was to help her heart know enlarged and lungs have a break, they set her up on lassix’s to get rid of the fluid. They found that Angie had hypothyroidism which could have been a big contributor to why everything happened as it did. The thyroid slows the body down and affects heart function.
That first night Angie was in the PICU Dennis and I left to grab a bite to eat. We went to target and each bought a pair of comfy pants. Why, I’m not sure because if you know us well enough we love our sweatpants and have a million pairs. We were coping, that night was long as we slept next to Angie’s crib with her pulse oxygen count buzzers beeping and the vent machine buzzing as they were trying to keep her settings low so she didn’t become to dependent on the vent.
I felt God’s hand on Angie that night he provided us comfort. I had a dream that night envisioning angels alongside her bed easing whatever pain and suffering she felt. As I laid on quite possibly the most uncomfortable pull out bed my face sweating on the plastic sheet covered pillow.
The next few days were rough. I ran the stairs, walked the halls, painted my nails some really rad color as we celebrated New Year’s Eve sleeping next to Angie’s crib on the hospital floor. Dennis was doing a push-up routine with a deck of cards he brought while I was trying to rehab my hips as they have been so sore since Angie’s birth. We were coping the best we could.
My sister in law sent a text: “how are you doing?” That’s when it hit me. I
Told her: ” I have my coping mechanisms. Doing the best I can.” I thought this could be so much worse. We know what the problem is and we are treating it with therapies and medication. I watched countless parents walk the hallways, sit next to their children on their iPhone, or one lady who tried to bum a cigarette off me after I have just did my 8 flights of stairs workout. They were all coping the best way they knew they could.
It strikes me now that we are home hopefully until surgery that everyone has struggles,seasons of pain, sorrow and we all cope some how some way.
My biggest coping mechanisms: being with Dennis and the girls, one point it was food, one point it was shopping,then the working out once I was able, was huge to the coping process, and of course a lot of trips to the coffee cart at Akron children’s. Writing on my blog and my fitness challenge in 2014 which you can find here: 2014 keeping it simple in 2014 fitness challenge . Right now I know going back to my workout regimen will be hard with the season I am in, and just taking small steps to attempt to get back to my healthy lifestyle seems like a simpler less overwhelming goal. After seeing a lot of sickness and health issues at the hospital that are out of many children’s and parents control, a lifestyle I am even more passionate about.
Once home I began praying over Angie all hours of the day and night. It struck me in the middle of a prayer.
The coping mechanisms they are all natural and they do help, but the help is temporary. It seems like the Coping mechanisms they start to fade after a while.
But:
Jesus, his love ENDURES forever. He provides comfort at all hours, he is there to listen, to give us the might to move on through the next minute, he helps some how some way get us through really extremely tough stuff. He forgives us, he never leaves our side, and his mercies are new as we wake each morning.
Jesus is how we cope and the only way we have made it through this season.
“Even when I walk through he darkest valley, I will not be afraid, for you are close beside me. Your rod and your staff protect and comfort me.” Psalm 23:4
These lyrics from Hillsong “All I need is You Lord”: Keep repeating through my head this week
Left my fear by side of the road
Hear You speak, won’t let go
Fall to my knees as I lift my hands to pray
Got every reason to be here again
Father’s love, that draws me in
And all my eyes wanna see is a glimpse of You
All I need is You
All I need is You Lord, is You Lord
All I need is You
All I need is You lord, is You Lord
One more day and it’s not the same
Your spirit calls my heart to sing
Drawn to the voice of my Savior once again
Where would my soul be without Your Son
Gave His life to save the earth
Rest in the thought that You’re watching over me
All I need is You
All I need is You Lord, is You Lord
All I need is You
All I need is You Lord, is You Lord
You hold the universe
You hold everyone on earth
You hold the universe
You hold, You hold
‘Cos all I need, is You
All I need is You
All I need is You
All I need is You Lord, is You Lord