Isaac was born on October 7, 2010 with a congenital heart defect called Hypoplastic Left Heart Syndrome (HLHS). He was in ICU for 15 months and has undergone 3 open heart surgeries as well as many other surgical procedures (trach, g-jtube, multiple bronchs, cardiac catherizations, ect..). He was transported via air ambulance from St Joseph's Children's Hospital in Tampa, FL to Children's Hospital Boston in August. He has been a living, breathing miracle since birth and has made many miraculous milestones. Please continue to keep him in your prayers believing that God has mighty plans for this little man and will continue to use him and his story to reach many.
My journey of faith began about January of last year. I had wanted another child for quite some time, but it just wasn’t happening. I decided to give the whole situation and any future children to God. I got on my knees and said “Okay God, I give this to you. If You want me to have another baby, You are going to have to do it. If you don’t, then I accept that.” Well, that month He did it. I know it wasn’t a coincidence. I believe God was waiting for me to give it to Him so that He could work out His amazing plan. In the very beginning of the pregnancy, I felt great, but then a few weeks in, the 24 hour a day sickness set in. I had to be hospitalized for about a week for hyperemesis. While in the hospital, I had my first ultrasound of our tiny baby. At that point, the baby measured a little smaller than he/she should have, but nothing to be concerned about. After being discharged from the hospital, I had another ultrasound at my OB follow-up appointment. During this ultrasound, they noticed an very enlarged yolk-sac, which usually means that the pregnancy could likely miscarry due to a genetic syndrome. This was our first glimpse of a possible problem. Because of the enlarged yolk-sac, we had follow-up ultrasounds and the OB recommended that I do the Nuchal Translucency Screening Test at 12 weeks since I was going to have an ultrasound then anyway. He thought that it would “put my mind at ease”. Well, the Nuchal Translucency Screening Test came back with a positive result for Down Syndrome. It came back that I had a 1 in 70 chance of having a baby with Down Syndrome, which is much higher than normal for a person my age. Because of this result, they scheduled me for a targeted ultrasound at 16 weeks, which is a very detailed ultrasound. At this ultrasound, they found numerous anomalies (long bones were short, missing middle bone of pinkies, single umbilical artery, echogenic bowel, and a heart defect). At this point the OB was still thinking Down Syndrome, but they didn’t know what the heart defect was. They just knew that they couldn’t find the 4 chambers and one side appeared larger than the other. I kept asking if the heart was something that could be fixed, but they didn’t know. I wasn’t at all concerned about the Down Syndrome. Before I became a mommy, some of my favorite students had Down Syndrome and I knew what a blessing they were. I just wanted to know what was wrong with my baby’s heart. So, a few days later, we found ourselves in our very fist Perinatologist’s appointment. I thought that at this appointment they were just going to confirm what we already knew that our baby had Down Syndrome and then to tell me what the heart defect was. Wow, was I wrong. That was probably the absolute worst day of my life. In addition to the markers from the previous ultrasound at the OB’s office, they also found several other markers including echogenic kidneys, small abdomen, etc. The perinatologist also could not find the 4 chambers of the heart. He couldn’t find a septum at all. At this point, with all of the markers, he proceeded to tell me that he thought my baby had Trisomy 13 or Trisomy 18 and that there was a great likelihood that my baby would die in utero. Up until this point, we were going to wait until the baby was born to find out if we were having a boy or a girl, but after this devastating news, I wanted to find out. I wanted to be able to call my baby by name. That is when we found out we were having a boy. A day that was supposed to be such an exciting day was clouded with such immense pain. I went home and wept and held my son’s blanket, rocked him in the rocking chair, sang to him, and read to him. Then began my quest for the perfect name. I spent hours looking up names with strong meanings. I had started compiling a list, but none of the names seemed just right. Then a day or two later, I believe God gave me the perfect name and it wasn’t even on my list. The name was Isaac. I immediately remembered the story in the Bible of Abraham and Isaac. How Abraham was going to offer up Isaac knowing that God was able to bring him back from the dead. In his heart, Abraham had offered Isaac to God, and God gave Isaac back to him. Before I had ever conceived Isaac, I had offered him to God, and God was going to give him back to me. I was also reminded that the name Isaac represented that NOTHING is too difficult for the Lord. With men, it was impossible for Sarah to even conceive Isaac. When Sarah found out the she was going to have a child she laughed (Isaac means laughter) and God said “Why are you laughing? Is anything too difficult for the Lord”. I believe that God was giving Isaac to me to show the world, again, the nothing is too difficult for Him. The world may laugh and think that it is impossible, but with God, ALL THINGS ARE POSSIBLE. Two weeks later, we went to a different Perinatologist. Some of the markers had improved or disappeared and the heart did not look as bad as originally suspected thanks to God answering many prayers. He wasn’t sure what had caused all of these anomalies. He wasn’t convinced that it was Trisomy 13 or Trisomy 18, but he felt that it was probably something genetic, he just didn’t know what syndrome. The only way to know for sure was to do an amniocentesis, but I wasn’t willing to take the risk of a complication harming my baby. He felt that the prognosis for my little baby was guarded. It was at this appointment that Isaac was diagnosed with Hypoplastic Left Heart Syndrome and we were referred to a pediatric cardiologist. Our cardiologist confirmed the diagnosis and we were told about the 3 surgeries that would be necessary for the baby to survive. We were given about a 75% chance of making it to the second surgery if there were no other abnormalities, but it was stressed that Isaac had other multiple issues and a probable genetic syndrome. We were also told that if the baby had Trisomy 13 or Trisomy 18, that they would refuse to operate. That’s not really something that I wanted to hear. I told the doctor that there were a lot of people praying for Isaac and that he was going to be fine. During the pregnancy, we saw MANY answers to prayer. Miracles were already happening. At each perinatologist appointment, when there would be a positive change, I was able to share about the many people praying for Isaac. At one point, the perinatologist told me to bring my husband with me on Monday and have my bags packed because Isaac would most likely need to be delivered because of the increasing pressure in the umbilical artery. I received the steroid shots for Isaac’s lungs and I updated the church so that people could be praying. Over the weekend many people were praying for Isaac. We went back in on Monday, but I did not pack my bags. I knew God was going to take care of it. The pressure had decreased and we were able to hold off for several more weeks! Time after time God intervened!
then came the day of Isaac’s birth. This was supposed to be an exciting time. I was about to meet my baby that I had been carrying for so long for the first time. I wanted others, including the doctors, to share in that excitement. Instead, I was hearing the term “incompatible with life” repeatedly. They felt that issues with his heart and kidneys, along with whatever genetic disorder they thought that he had would be too much for him. They said that just the heart defect alone or the kidney problems alone were too much and the doctor believed that he had a severe genetic syndrome. They even wanted to take me off of the monitor at night when Isaa's heart rate kept dropping, but I refused. And I was asked more than once if I was sure that I wanted to do everything I could (including having a c-section) to try to save him. As if his life wasn't worth saving. But, Isaac was and still is SO WORTH saving! And that’s okay - God wasn’t paying any attention to them anyway. He knew that nothing was too difficult for Him and I had to trust God to take care of it. Within hours of his birth, he was transferred across the street to the Pediatric Cardiac Intensive Care Unit at St. Joseph’s Children’s Hospital. Well, it turned out that the brain issue that Isaac had been diagnosed with before birth, the neurologist said that it wasn’t as big of an issue as they had previously thought and that we shouldn’t be concerned about it. In fact, it might have no effect on him at all. The kidneys that they thought were both bad were not. His left kidney functioned just fine and had taken over for the right one. And this brings us to the heart. As previously diagnosed in utero, it was confirmed that Isaac did indeed have Hypoplastic Left Heart Syndrome. Before they would put him on the surgery schedule, he had to undergo genetic testing to rule out Trisomy 13 and Trisomy 18 and to check for many other genetic syndromes. While we were still awaiting those results, 4 days after Isaac was born, the cardiologist on that week (not our regular cardiologist) came in and told us some very devastating news. He said that Isaac had something called heterotaxy asplenia. And with this condition, Isaac would not have a spleen. He said that because of this that Isaac would only have a 10-20% chance of surviving the Norwood, which is the first of 3 surgeries that Isaac needed. I asked if we could just check to see if there was a spleen and he said that they had never seen Isaac’s exact heart condition (a variant of HLHS) without heterotaxy. This was so hard to hear. I was sobbing and I just remember telling Isaac over and over “It’s okay”, “It’s okay”. At that point I could either succumb to fear and doubt, or I could trust God and let faith arise. I chose to let faith arise. I remember telling my husband that God was just going to show how great our God is. Later in the week as we were waiting for the results to come back in for the genetic testing so that we would know if they would perform the surgery that Isaac needed to help save his life, I was playing the song for Isaac and singing to him “How Great is Our God”. All were about to see how great our God really is. The same cardiologist came in and said that he had the preliminary report for the genetic testing and that Isaac did not have Trisomy 13, 18, or 21. He then proceeded to say that he was “shocked and surprised”. Although he did not have one of these syndromes, he still felt that something else would show up on the detailed genetic test when it came back, but that it wouldn’t be anything that would keep him from having his surgery (later on the official results showed normal chromosomes – I believe this was a miracle in and of itself!). Because the doctor was SO surprised by the results, he decided to check to see if Isaac did in fact have a spleen like I told him he did. Well, God answered prayers once again! The results – Isaac DID have a spleen. Time and time again, we have seen God’s faithfulness and God’s answers to prayer. Day after day, God has sustained him and brought him through time and time again. Things like the right doctor being on at exactly the right time. For example, after a heart catherization in which Isaac hemorrhaged into his lung, he needed a bronchoscopy with lavage to suction the blood out. The intensivist that was on “happened” to be the airway specialist who does the bronchs (not a coincidence). There were even times when Isaac needed immediate attention and an intensivist “happened” to be there at a time that they were not typically there. Even the doctor commented that she had never been there at that time and she knew that it was not a coincidence. Time after time, He has spared Isaac’s life. Time after time, God has shown His faithfulness.
Every day I spoke life over Isaac starting even when he was in the womb, and I still do. Each time the doctors would say something negative about Isaac, I would whisper in Isaac’s ear “No, Isaac. You are going to be fine”; “You shall not die, but live and declare the works of the Lord” (from Psalm 118:17), etc. The Bible says that the “death and life are in the power of the tongue” (Proverbs 18:21a). Our words have power. Everyday I speak life over him and declare God’s Word over him. God says that His Word does not return void. His word says that He is the healer. His word says that by His stripes we are healed. His Word says that He is the God “who forgives all your iniquities, who heals all your diseases, who redeems your life from destruction” (Psalm 103:3-4a). His word says that by His stripes we are healed. “God is not a man, that He should lie….Has He said and will He not do?” (Numbers 23:19) If God says it, then it is true.
There were many times that I would beg God for Isaac’s life. Please, Lord, let me watch him grow up. And then I would have to let faith arise and know that God heard my prayer and that Isaac was going to be just fine. What would be the point of praying if I didn’t have faith that God was listening and acting on those prayers? God’s word says that “If you ask anything in My name, I will do it.” (John 14:14) It doesn’t say might, it says will. But we have to ask in faith and our request has to line up with God’s Word. His Word is His will. And when those things line up, He will give you that peace that passes all understanding and you will know that things will be fine. Am I saying that I never worried? No, I’m not saying that – I am human. But when that worry would come up, I would have to choose to dismiss it and stand on God’s promises. When I didn’t see the answers right away, that didn’t mean that they weren’t on their way. God says that “Faith is the substance of things hoped for, the evidence of things not seen.” (Hebrews 11:1) Just because I didn’t see it happening at the time, didn’t mean that God wasn’t working. God says “If you can believe, all things are possible to him who believes” (Mark 9:23) and when it is hard to have faith, you can cry out to God just like the man in the Bible crying out to Jesus for his son “Lord I believe; help my unbelief” (Mark 9:24b).
There was a time when I was crying out telling Isaac that I would take his place in a heartbeat if I could. Oh, how much I wanted it to be me instead of him. But I couldn’t take it away. No matter how much I loved him and how much I wanted to take the problems away, I couldn’t. Then I was reminded that that is what God did for us. I couldn’t take Isaac’s place, but Jesus already did. He took our sin, and he took Isaac’s sickness. He didn’t have to, but He did. I don’t have to bear it and Isaac doesn’t have to carry it. Isaac’s healing has already been paid for. Jesus already carried it. He already paid the price. That’s how much He loves us. That is what real love is.
In the very beginning, I would pray for God to take all of the problems away. But there came a point where I felt that God was going to allow us to go through some of these problems for a reason. Sometimes God delivers you from the problems, and He has from many, but sometimes He delivers you through them. I wanted God to just take all of the problems away, but I knew that God was going to bring Isaac through instead. It would have been easier to just not go through any of this, but it is in these times that we have learned complete dependence on God. When He is your only hope, that is where real faith begins. I have stopped praying for a perfect baby. Isaac IS perfect in our eyes and God’s eyes. Whatever his mental capacities will be as he grows into adulthood don’t matter. His life is still valuable to us and to God. Human worth is not based on intelligence and how much one “contributes to society”. If Isaac were the only person on earth, God would have still died for him. God said that He created us in His image. (Genesis 1:27) That does not exclude Isaac. He is not a mistake. God created his inmost being and knit him together in my womb; Isaac is fearfully and wonderfully made. (Psalm 139: 13, 14b). Sure, it would have been easier for God to just take all of the problems away, but for some reason He has decided to bring Isaac through them. God’s Word says “we also glory in tribulations, knowing that tribulation produces perseverance; and perseverance, character; and character, hope. Now hope does not disappoint” (Romans 5:4-5a) Maybe God has called us to this life to reach out to other’s who are hurting here in the hospital and to show them that with God, there is hope for their children. Isaac gives hope to other parents who are without hope. I know that God has GREAT plans for Isaac. God says “For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you a hope and a future”. Now instead of praying for the perfect baby, I pray for His wisdom on what Isaac needs to grow into the man that God has called him to be and that I KNOW he will be someday. God says that if we ask for wisdom that He will give it to us liberally and without reproach (James 1:5).
Isaac truly is a miracle. Even the doctors have referred to him as the miracle baby. God has been using Isaac to show the world that NOTHING IS TOO DIFFICULT FOR HIM! He is using Isaac to help heal people’s spiritual hearts. I am so thankful to God that he chose me to be Isaac’s mom. I am so thankful that God made Isaac a warrior and continues to give him the strength to fight and overcome. I am so thankful for the miracles that He has done and continues to do in Isaac’s life. I am so thankful for all of the people that have prayed for him and continue to do so. I am so thankful for all of the incredible doctors, nurses, and people that I have met along the way. I have learned that this life is not about me or Isaac, but it is about bringing glory to God. I know that Isaac was born this way so “that the works of God should be revealed in him” just like the man in the Bible that Jesus healed (John 9:3). I am so thankful that because of God, Isaac “will live and not die and declare the works of the LORD”! This is just the beginning of his story. I look forward to the day when I can watch him tell others what God has done for him. My life will never be the same. I have seen such pain and such joy. I have seen living, breathing miracles. I have now experienced a world I never knew existed. I cannot continue to live my life pretending it isn’t real. As much as I would like to forget the pain of the past, I cannot allow that to happen. I cannot fully appreciate the joy of having my son here today without remembering where it was that God has brought us from. Never have I been so grateful!
Then came the day of Isaac’s birth. This was supposed to be an exciting time. I was about to meet my baby that I had been carrying for so long for the first time. I wanted others, including the doctors, to share in that excitement. Instead, I was hearing the term “incompatible with life” repeatedly. They felt that issues with his heart and kidneys, along with whatever genetic disorder they thought that he had would be too much for him. They said that just the heart defect alone or the kidney problems alone were too much and the doctor believed that he had a severe genetic syndrome. They even wanted to take me off of the monitor at night when Isaa's heart rate kept dropping, but I refused. And I was asked more than once if I was sure that I wanted to do everything I could (including having a c-section) to try to save him. As if his life wasn't worth saving. But, Isaac was and still is SO WORTH saving! And that’s okay - God wasn’t paying any attention to them anyway. He knew that nothing was too difficult for Him and I had to trust God to take care of it. Within hours of his birth, he was transferred across the street to the Pediatric Cardiac Intensive Care Unit at St. Joseph’s Children’s Hospital. Well, it turned out that the brain issue that Isaac had been diagnosed with before birth, the neurologist said that it wasn’t as big of an issue as they had previously thought and that we shouldn’t be concerned about it. In fact, it might have no effect on him at all. The kidneys that they thought were both bad were not. His left kidney functioned just fine and had taken over for the right one. And this brings us to the heart. As previously diagnosed in utero, it was confirmed that Isaac did indeed have Hypoplastic Left Heart Syndrome. Before they would put him on the surgery schedule, he had to undergo genetic testing to rule out Trisomy 13 and Trisomy 18 and to check for many other genetic syndromes. While we were still awaiting those results, 4 days after Isaac was born, the cardiologist on that week (not our regular cardiologist) came in and told us some very devastating news. He said that Isaac had something called heterotaxy asplenia. And with this condition, Isaac would not have a spleen. He said that because of this that Isaac would only have a 10-20% chance of surviving the Norwood, which is the first of 3 surgeries that Isaac needed. I asked if we could just check to see if there was a spleen and he said that they had never seen Isaac’s exact heart condition (a variant of HLHS) without heterotaxy. This was so hard to hear. I was sobbing and I just remember telling Isaac over and over “It’s okay”, “It’s okay”. At that point I could either succumb to fear and doubt, or I could trust God and let faith arise. I chose to let faith arise. I remember telling my husband that God was just going to show how great our God is. Later in the week as we were waiting for the results to come back in for the genetic testing so that we would know if they would perform the surgery that Isaac needed to help save his life, I was playing the song for Isaac and singing to him “How Great is Our God”. All were about to see how great our God really is. The same cardiologist came in and said that he had the preliminary report for the genetic testing and that Isaac did not have Trisomy 13, 18, or 21. He then proceeded to say that he was “shocked and surprised”. Although he did not have one of these syndromes, he still felt that something else would show up on the detailed genetic test when it came back, but that it wouldn’t be anything that would keep him from having his surgery (later on the official results showed normal chromosomes – I believe this was a miracle in and of itself!). Because the doctor was SO surprised by the results, he decided to check to see if Isaac did in fact have a spleen like I told him he did. Well, God answered prayers once again! The results – Isaac DID have a spleen. Time and time again, we have seen God’s faithfulness and God’s answers to prayer. Day after day, God has sustained him and brought him through time and time again. Things like the right doctor being on at exactly the right time. For example, after a heart catherization in which Isaac hemorrhaged into his lung, he needed a bronchoscopy with lavage to suction the blood out. The intensivist that was on “happened” to be the airway specialist who does the bronchs (not a coincidence). There were even times when Isaac needed immediate attention and an intensivist “happened” to be there at a time that they were not typically there. Even the doctor commented that she had never been there at that time and she knew that it was not a coincidence. Time after time, He has spared Isaac’s life. Time after time, God has shown His faithfulness.
Every day I spoke life over Isaac starting even when he was in the womb, and I still do. Each time the doctors would say something negative about Isaac, I would whisper in Isaac’s ear “No, Isaac. You are going to be fine”; “You shall not die, but live and declare the works of the Lord” (from Psalm 118:17), etc. The Bible says that the “death and life are in the power of the tongue” (Proverbs 18:21a). Our words have power. Everyday I speak life over him and declare God’s Word over him. God says that His Word does not return void. His word says that He is the healer. His word says that by His stripes we are healed. His Word says that He is the God “who forgives all your iniquities, who heals all your diseases, who redeems your life from destruction” (Psalm 103:3-4a). His word says that by His stripes we are healed. “God is not a man, that He should lie….Has He said and will He not do?” (Numbers 23:19) If God says it, then it is true.What would be the point of praying if I didn’t have faith that God was listening and acting on those prayers? God’s word says that “If you ask anything in My name, I will do it.” (John 14:14) It doesn’t say might, it says will.When I didn’t see the answers right away, that didn’t mean that they weren’t on their way. God says that “Faith is the substance of things hoped for, the evidence of things not seen.” (Hebrews 11:1) Just because I didn’t see it happening at the time, didn’t mean that God wasn’t working. God says “If you can believe, all things are possible to him who believes” (Mark 9:23) and when it is hard to have faith, you can cry out to God just like the man in the Bible crying out to Jesus for his son “Lord I believe; help my unbelief” (Mark 9:24b).I couldn’t take Isaac’s place, but Jesus already did. He took our sin, and he took Isaac’s sickness. He didn’t have to, but He did. I don’t have to bear it and Isaac doesn’t have to carry it. Isaac’s healing has already been paid for. Jesus already carried it. He already paid the price. That’s how much He loves us. That is what real love is.
As many of you already know, Isaac was in ICU for 15 months and has undergone many surgical procedures, including three open heart surgeries. The financial strain of hospitalization alone is immense. However, the Wetherington family has also had many unexpected expenses. A couple examples are the following: In May, Isaac's older brother, Tekoah age 7 underwent heart surgery too for a congenital heart defect that went undetected his entire life. In August, Isaac was flown via air ambulance from St Joseph's Hospital in Tampa, FL to Boston Children's Hospital in Boston, MA. This flight alone left the Wetherington family with a $20,000 bill not covered by insurance. Isaac was recently discharged and has home nursing care. He will need a cardiac catherization in approximately 5 months (a follow up being done at Boston Children's). Because Isaac is still on the ventilator, another flight home at this time is out of the question. Due to these circumstances, the Wetherington's are temporarily renting an apartment in Boston (which is VERY exspensive).
We, as Stephanie and Jason's family and friends, are asking for all those who feel so lead to please aid us in helping this amazing family's financial burden to be lightened. Thank you in advance for your support not only financially but for your continued prayers.
Below, we will be keeping up to date upcoming fundraisers.
Donations for Isaac
Friday April 13th from 5:00PM-8:00PM at First United Mehtodist Church in downtown Brooksville The Heart of Isaac is hosting a BBQ dinner and Auction for Isaac and his grandfather Eddie Moen (who recently underwent a stem cell transplant for multiple myeloma). The cost is a $10 donation. Many great auction items including a vacation!
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We would love to hear from you!
