Thank you for your patience, it's taken awhile to get the full story up.
Below you will see the first half of the story from Ida's point of view. The second half of the story is from Johnny's point of view.
We hope you will be blessed by what you read and remember God will work specifically in your own life if you call upon Him and allow Him into your life.
Below you will see the first half of the story from Ida's point of view. The second half of the story is from Johnny's point of view.
We hope you will be blessed by what you read and remember God will work specifically in your own life if you call upon Him and allow Him into your life.
Part I
INTRO:
Praise God from whom all blessings flow.
We had an amazing journey on the road to bringing our second child into this world. God was, without a doubt, with us the entire time. Day by day, the Lord guided us in what we should do. Day by day, He gave us the strength and the peace to hear what the doctors would tell us week after week. Day by day, He gave us joy in Him, knowing that with God nothing shall be impossible! God showed us many amazing things on this journey. He strengthened and tested our faith like it had never been tested before. We now know what faith means. We have always had faith in our Lord Jesus Christ. We believe He is real, we believe He is our Savior and Lord without needing to see Him. This was our faith before our journey. It is easy to have this type of faith. It is easy to believe in Christ when you see Him working in your life. It is easy to believe in Him when you research historical evidence pointing to the fact that He is who He said He was. On this journey, we found what it was to exercise our faith. We had to use our faith and believe what the Lord was telling us, even though what the doctors would tell us was something different. The only thing we had to stand on was God's promises from the Bible. His Word never fails. All we had were the promises of Jesus and nothing else. So you can imagine how tightly we clung to them. This was the first time we had to have faith in what Jesus said even though we were seeing with our own eyes what the ultrasound picture was showing in little John’s heart, and what doctor after doctor, (more than eight different doctors) were all telling us… “his heart is too small.” We never doubted what the doctors were seeing. But the circumstance that was around us never made us lose faith that God WOULD do something. Not that He could...but He WOULD.
The circumstances you face today may seem grim. There may be no way out. But God is right there, waiting for you to come to Him. Give the burden you carry to Him, have faith that He will take care of you. Keep His Word, from the Bible, in your heart and know what He promises you. Then be still, and watch what He will do in your life.
THE DOCTORS NEWS:
On October 17th, on my birthday, I got a phone call from my doctor telling me our baby has something called hypoplastic left heart syndrome. We had never heard of this before and the doctor did not explain much on the phone. So we went to the internet and these are some of the things we read:
· In hypoplastic left heart syndrome (HLHS), the heart’s left side — including the aorta, aortic valve, left ventricle and mitral valve — is underdeveloped.
· In most children, the cause isn’t known. Some children can have other heart defects along with HLHS.
· The baby often seems normal at birth but comes to medical attention within a few days of birth as the ductus closes. The baby may appear ashen, have rapid and difficult breathing and have difficulty feeding.
· This heart defect is usually fatal within the first days or month of life unless it’s treated.
· This defect isn’t correctable, but some babies can be treated with a series of operations, or heart transplantation.
· Children with HLHS may be advised to limit their physical activities to their own endurance. Generally, many competitive sports pose greater risk.
· Children with HLHS require lifelong follow-up by a cardiologist for repeated checks of how their heart is working.
· Virtually all children with HLHS will require heart medicines, heart catheterization and additional surgery.
· Children with HLHS are at increased risk for developing endocarditis. Ask your pediatric cardiologist about your child’s need to take antibiotics before certain dental procedures to help prevent endocarditis.
Needless to say Johnny and I were devastated and shocked to say the least. But a few interesting things happened after we found out this horrible news.
THE PHONE CALL AND GOD’S TIMING:
Before the phone call from the doctor came, I was starting to get ready to go to dinner with Johnny for my birthday. My Mom and sister were going to come to the house later that evening to take care of Garo. It was about 5:30pm on a Friday night. I got a call from Johnny saying he is on his way home. As soon as I hung up the phone, it rang again. This time, it was the doctor. She told me everything looks great with the baby. There is just one concern they have. They think the baby has something called hypoplastic left heart syndrome. The doctor wanted me to go in for another ultrasound with a perinatologist. She really didn't explain much further than that. As soon as I hung up the phone with her, I went downstairs to check on the computer what this syndrome was. As I came to the bottom of the stairs, Johnny was opening the door, coming home from work. I told him that the doctor called and that I was just going to go check on the computer what this syndrome was. So we went together to the computer and looked it up. (God’s timing that we were together.) We read what the websites said this syndrome was and our whole world just crushed around us. We both read in silence and looked at each other in disbelief. We were in shock and were trying to hold back our tears. At that same moment, the doorbell rang. (God’s timing) It was my mom and sister coming to take care of Garo. I couldn't move from the chair in front of the computer, so Johnny went to open the door. They could see all over Johnny’s face that something was wrong. He couldn't even speak. They came in and we told them what we had read and what was going on. By the Lord's strength, they both were our rock that night. They were in shock too, yet they turned it over to the Lord. They told us the Lord is with us, and with this baby, and for us not to worry. Of course, they were concerned as well, but we are in awe of God's timing. God’s timing! For me not to have to read about this by myself, and have Johnny there while reading. God's timing! For bringing mom and Lara to our front door at the exact moment we needed them. We didn't realize it at the time, but it was all God's perfect timing!
THE WORD OF KNOWLEDGE:
My dad was on a business trip in South Carolina the day we found out about the baby’s heart problem. That night, when my mom and sister went home, they called dad to let him know about what we were told about the baby. He was sad to hear such bad news, especially while he was away from the family. After he got off of the phone, he turned on the television and noticed that the 700 Club show was on. He listened in and they were just starting to pray at the end of their program for people’s needs. Dad prayed along with them. The next moment, the woman on the show said that there’s someone who’s pregnant and just got some bad news from the doctor about their baby. Maybe some have even suggested abortion. It’s not what the doctors think it is. God is telling you “Trust in Me, just Trust in Me.”
God’s timing once again had taken care of us. At the time we found out the bad news, from that moment on, we kept being built up and given hope, over and over again. When you are able to trust God and what He will do for you, you will see how He takes care of you day by day. My dad reached out in prayer, and God met him that night, in the power of Jesus’ name, to let us all know it will be ok.
THE APPOINTMENTS:
There was appointment after appointment of specialists that we saw. With over eight different doctors looking at the baby’s heart and all saying the same thing-- the left side of the heart is too small. The very first appointment was one of the worst. The doctor who read the ultrasound told us, “there is a hole here, and this valve is too small, this ventricle is too small, not enough blood flow is going through, maybe blood is mixing,” etc. etc. Just listing off every bad thing you can think of and concluding that this baby has an abnormal heart. She also mentioned that many times, babies that have abnormal hearts can be an indicator that they might also have a chromosomal abnormality which would include Down Syndrome. Things definitely were not looking good. But once again the Lord sent someone to give us a glimmer of hope. The doctor called in one of her colleagues who was much more optimistic. He agreed with what she was seeing but added, “at least everything is there, it’s just too small or not quite where it needs to be.” That was one positive thing we could take with us from that appointment. At least all the parts are there, nothing is necessarily missing. Things just aren’t the way they should be in a baby’s heart.
The next appointment was with the same doctors who did the ultrasound again. This time, they had one of their pediatric cardiologists come to look at the ultrasound as well. The Lord once again calmed our nerves before we even went into this appointment. The moment before we left the house, I turned to my daily calendar to read the verse for the day. God once again spoke to us. The verse was Malachi 4:2, “But unto you that fear my name shall the Sun of righteousness arise with healing in his wings…” When they looked at the ultrasound again, this time with the pediatric cardiologist, things seemed a little bit better. The pediatric cardiologist looked at the ultrasound, studying what he was seeing on the screen. He turned to us and said, “Well, I just ruled out 40 of the worst things that it is not.” “whew!” What a relief! He agreed with perinatologists that this is a hypoplastic left heart. But instead of hearing so much of the negative like our first appointment, this doctor started telling us some positive things he was seeing. Some of the valves seemed to be a good size compared to what he was expecting and so on. We were relieved!
GOD’S TIMING FOR COMFORT
There was another work of the Lord that happened when I had dinner with some of my high school friends that I still keep in touch with. One of these friends has had some heart issues since we were in high school. I never knew what it specifically was until that night when I told my friends what was going on with our baby. It turned out that my friend had a similar type of condition, except it was much worse. She actually didn’t have a chamber wall in her heart when she was born! I couldn’t believe what I was hearing. Once again, the Lord comforted us in knowing that if my friend had surgery on her heart almost 30 years ago and my friend is doing absolutely fine, then our baby will be okay too.
One of my other friends is a nurse. She asked me who the pediatric cardiologist was that would be helping us. I told her the name of the doctor, and she was so happy! She told me that she works with the same doctor and that he is a GREAT doctor!!!! My friend even took care of infant patients with this type of heart problem! What a comfort the Lord sends us right when we need it! God sent us the comfort of knowing that this doctor was credible, not just a doctor out of the blue! He sends the right people our way to comfort us in our time of need and it is exciting to see Him work specifically in your life.
ON A SIDE NOTE…
It was open enrollment at the bakery (Johnny’s work) for insurance. We have always had HMO insurance. Before we even knew anything about the baby we had discussed about switching to PPO. When we found out about the baby, it was a sure thing we would be switching to PPO. This can only be done during open enrollment. We found out the news about the baby in October, and it was also open enrollment in October. We could switch to PPO and have the benefit of any doctor or specialist we would like during this process. Having PPO insurance was effective November 1, 2008. This was the same month when we started seeing many doctors for ultrasounds to see what is happening with the baby. God’s perfect timing strikes again!
THE SECOND SIGN - THE BABY IS FINE
God comforted us with the Word of Knowledge through a TV program that the baby is going to be okay, and to just trust in the Lord. Well, the Lord did it again! He speaks through people, and you know it’s Him speaking to you when it cuts into your soul. You know without a doubt God is speaking to you. Here is what I had written on what happened November 16th:
Steven went to Rock Harbor Church tonight. They were speaking about the Holy Spirit and how the Holy Spirit is a person. They asked everyone to pray and the Pastor told everyone he senses there are people with hardened hearts. If that is you, stand up and have the people around you lay hands on you and pray. Steven had been praying for five or six things, one of them being this pregnancy and the baby. The last thing he prayed is for the Lord to show him His power and the power of the Holy Spirit. Just about two minutes later someone to the left of him who was praying started to get loud. He was praising God with a medium loud voice, but then he started yelling in a very strange way and very loudly saying he has a vision, God is giving him a vision….”The doctors are wrong, the doctors are wrong, I don’t care what the doctors say! The child is fine, there is nothing wrong.” Steven couldn’t believe what he was hearing. At first, he thought that the guy was crazy, but then he realized what had just happened. Steven had just been praying, and God was speaking!
The same thing happened when my dad was praying. The Lord spoke and answered in the next few moments after praying specifically for the situation.
The weird thing about this was that Rock Harbor is not a charismatic type of church. Things like that usually do not happen in that church. It was something totally out of the ordinary. Also, Rock Harbor is a church filled with young people. Most of the people that come to that church are in college. It’s a room filled with hundreds, if not thousands of college students. Not very many of them would be pregnant, or pregnant with complications.
A pastor was preaching on the radio and said, “You know it’s God speaking to you when you hear something twice. Hearing it again is confirmation that it’s the Lord speaking to you”. This was our second confirmation that the baby will be fine!!!
I had a doctor’s appointment the very next day after this happened. Once again the Lord gave us the comfort we needed to face the doctors once again. At every appointment they would tell us the same thing. “The left side of the heart is too small. The baby will need three major heart operations to re-route everything to make the heart work, not at its full potential, but it would work.” We needed the comfort and faith God was giving us to face these doctor appointments full of grim news.
FEELINGS OF ALL THE DOCTOR APPOINTMENTS
Going to the doctors to get ultrasounds was an interesting experience. Every time we would go in, we would have hopes that everything would be completely fine, but this was never the case. First hearing the news about the baby we felt we were in our deepest valley. Within the hour we were built back up by having faith in the Lord. When we would go to a doctor’s appointment, we were knocked down once again. After those doctors’ appointments we would accept what the doctors were seeing, yet our faith would be built up once again because we knew what the Lord could do, would do, and what He said he will do. Luke 1:37 says, “For with God, nothing shall be impossible.” So we would go again to the doctors’ appointments, and it would be another blow to our faith in what God would do. Month after month, the doctors would tell us bad news. There would be few minor improvements in what they saw in the ultrasound. But it wouldn’t be good enough to have a complete and whole heart in the baby.
Jesus Christ has always been in our lives and we are His children. We looked to Him, prayed to Him, and read His Word, the Bible, during this entire process. The promise He gives us are so true, James 4:8, “Come near to God and He will come near to you.” Because we were in His Word, we were never left knocked down by what the doctors would tell us. Anytime we felt the punch, He lifted us up. He would lift us higher than the time before until we knew without a doubt, that we would see a miracle happen in this child, no matter what the doctors would see or say. God promised it to us, and He never will go back on His promises.
We were not the type of Christians who didn’t listen to the doctors’ advice and tell them they don’t know what they’re talking about. We definitely accepted what was happening in the baby’s heart. It was there in front of us, on the ultrasound screen, in black and white, month after month. We knew this baby had a heart problem. But we also had our faith and hope in Jesus Christ, knowing full well that this baby was in His hands. What better hands to be in, than those of the Father who created him.
THE ARRANGEMENTS
Everything needed to be arranged. I had to switch doctors so the baby could be delivered at St. Joseph’s Hospital (instead of our usual Hoag Hospital) since St. Joseph’s hospital was connected to Children’s Hospital Orange County (CHOC). We were told the baby would be taken straight to CHOC after delivery. We would only have fifteen to twenty minutes with the baby after he was born.
We needed to decide where to have the surgery done. There are only a handful of surgeon’s that do these types of surgeries in Southern California. There was one surgeon in Children’s Hospital Orange County (CHOC), and one in Children’s Hospital Los Angeles (CHLA).
We even had a meeting with the team of doctors and nurses that would be there at time of delivery. Johnny and I walked into a conference room. The room was an empty square space with tables set up in a U Shape. The Doctors and nurses were all around the tables and we sat in front of them to discuss all that would happen at time of delivery. Talk about intimidating! There was a box of tissues placed on the desk in front of us as we sat down. It made us think of all the other patients these doctors see that probably break down from all the pressure and reality of everything happening to them. Because we had the Lord to lean on, we were absolutely fine and didn’t need the tissues!
The meeting consisted of the OB-GYN, the nurses that would be at the delivery, chaplain of the hospital, a social worker, a pediatric cardiologist, and the head nurse of the NICU at CHOC hospital. There were about ten in all. We had many questions and concerns for the doctors in NICU.
1. Would the baby absolutely need the medicine they were planning to give him right away, after birth, which could have the side effect of breathing problems?
2. Couldn’t they do an echocardiogram on the baby first to see his heart and confirm what they had been seeing in utero before giving him this medicine?
3. What are the side effects of this medicine? Babies might have a hard time breathing or stop breathing all together, which in turn would lead to needing a breathing tube.
4. If he needed the breathing tube, then it could cause him to have a hard time eating after it’s taken out, which then would lead to possible feeding tube in his stomach.
There were many issues we were dealing with and trying to make decisions for. There were many questions we needed to ask to try to get the doctors to see our point of view. The doctors do these things all the time, and everything is normal for them….But this was OUR baby we are talking about! So as you can imagine, a parent’s point of view is a little different than the doctors.
These were not easy times to deal with everything we needed to deal with, but God was with us the entire time. Through all the prayers for our family, we actually felt the presence of God with us. So when we were dealing with the difficult decisions, God dampened the difficulties. We didn’t crack under the pressure, which is what should have been happening to us. God was hearing every single prayer from hundreds of people praying for us, even people that don’t even know us.
WHAT MORE LORD???
There was one day that I just HAD to ask the Lord, “What more Lord?” I was about five months pregnant and had a cold and a sore throat.
I had my first appointment to meet with my new doctor who would deliver the baby at St. Joseph’s Hospital. It was a difficult appointment because the doctor told me that this type of heart problem is very hard to deal with. He mentioned that just because this baby has a heart condition, it doesn’t mean any other siblings or future pregnancies will bring the same thing. He went on to tell me that he had another patient who was pregnant with a child with the same heart condition as mine. They decided to have an abortion. They became pregnant again, and their second child had no problems or complications at all. I told the doctor that there is no way I would abort the child. That’s something that I just could not live with and that we would deal with whatever comes as it comes. He told me, “Yes, I know you say that now, but once it comes, it’s very difficult to handle.”
That appointment was hard in itself but after I left to come back home, I was at a stop sign, waiting to turn right. I don’t know what happened, but the car behind me rear ended me while I was waiting. The car didn’t hit too hard, but hard enough to give me a scare. I couldn’t believe what was happening.
Not that it’s important, but a few weeks prior we were parked at the Irvine Spectrum Structure, and the person who parked next to us side swiped the tail end of our van when he was coming out. We didn’t see it happen, but saw the effects of it on our car. And now, I get rear ended.
Side Note: A few weeks after the second incident, I was parked in a parking lot with shopping carts around. I was sitting inside the car getting my things together. All of a sudden I heard a big boom and something had hit the tail of the van AGAIN! There were very high winds that day, when I looked back, I saw a shopping cart just rolling along the parking lot. It had hit my car, and went on to hit someone else’s car. What more Lord??????
Oh, yea….the Lord showed me what more there was. Later, while we had been at the hospital for a week and a half now, we were coming into the structure in the morning to park and see our baby boy. The parking lot was completely full that day, cars everywhere, people backed up and waiting to get a parking spot. As we were waiting for a parking spot, the truck behind us decided to pass us. While he tried to pass, he hit the side of our car. You guessed it, the tail end of the car AGAIN! We just couldn’t believe it!!! Good thing we hadn’t fixed any of the other things at that time. When it rains…it pours.
Praise God from whom all blessings flow.
We had an amazing journey on the road to bringing our second child into this world. God was, without a doubt, with us the entire time. Day by day, the Lord guided us in what we should do. Day by day, He gave us the strength and the peace to hear what the doctors would tell us week after week. Day by day, He gave us joy in Him, knowing that with God nothing shall be impossible! God showed us many amazing things on this journey. He strengthened and tested our faith like it had never been tested before. We now know what faith means. We have always had faith in our Lord Jesus Christ. We believe He is real, we believe He is our Savior and Lord without needing to see Him. This was our faith before our journey. It is easy to have this type of faith. It is easy to believe in Christ when you see Him working in your life. It is easy to believe in Him when you research historical evidence pointing to the fact that He is who He said He was. On this journey, we found what it was to exercise our faith. We had to use our faith and believe what the Lord was telling us, even though what the doctors would tell us was something different. The only thing we had to stand on was God's promises from the Bible. His Word never fails. All we had were the promises of Jesus and nothing else. So you can imagine how tightly we clung to them. This was the first time we had to have faith in what Jesus said even though we were seeing with our own eyes what the ultrasound picture was showing in little John’s heart, and what doctor after doctor, (more than eight different doctors) were all telling us… “his heart is too small.” We never doubted what the doctors were seeing. But the circumstance that was around us never made us lose faith that God WOULD do something. Not that He could...but He WOULD.
The circumstances you face today may seem grim. There may be no way out. But God is right there, waiting for you to come to Him. Give the burden you carry to Him, have faith that He will take care of you. Keep His Word, from the Bible, in your heart and know what He promises you. Then be still, and watch what He will do in your life.
THE DOCTORS NEWS:
On October 17th, on my birthday, I got a phone call from my doctor telling me our baby has something called hypoplastic left heart syndrome. We had never heard of this before and the doctor did not explain much on the phone. So we went to the internet and these are some of the things we read:
· In hypoplastic left heart syndrome (HLHS), the heart’s left side — including the aorta, aortic valve, left ventricle and mitral valve — is underdeveloped.
· In most children, the cause isn’t known. Some children can have other heart defects along with HLHS.
· The baby often seems normal at birth but comes to medical attention within a few days of birth as the ductus closes. The baby may appear ashen, have rapid and difficult breathing and have difficulty feeding.
· This heart defect is usually fatal within the first days or month of life unless it’s treated.
· This defect isn’t correctable, but some babies can be treated with a series of operations, or heart transplantation.
· Children with HLHS may be advised to limit their physical activities to their own endurance. Generally, many competitive sports pose greater risk.
· Children with HLHS require lifelong follow-up by a cardiologist for repeated checks of how their heart is working.
· Virtually all children with HLHS will require heart medicines, heart catheterization and additional surgery.
· Children with HLHS are at increased risk for developing endocarditis. Ask your pediatric cardiologist about your child’s need to take antibiotics before certain dental procedures to help prevent endocarditis.
Needless to say Johnny and I were devastated and shocked to say the least. But a few interesting things happened after we found out this horrible news.
THE PHONE CALL AND GOD’S TIMING:
Before the phone call from the doctor came, I was starting to get ready to go to dinner with Johnny for my birthday. My Mom and sister were going to come to the house later that evening to take care of Garo. It was about 5:30pm on a Friday night. I got a call from Johnny saying he is on his way home. As soon as I hung up the phone, it rang again. This time, it was the doctor. She told me everything looks great with the baby. There is just one concern they have. They think the baby has something called hypoplastic left heart syndrome. The doctor wanted me to go in for another ultrasound with a perinatologist. She really didn't explain much further than that. As soon as I hung up the phone with her, I went downstairs to check on the computer what this syndrome was. As I came to the bottom of the stairs, Johnny was opening the door, coming home from work. I told him that the doctor called and that I was just going to go check on the computer what this syndrome was. So we went together to the computer and looked it up. (God’s timing that we were together.) We read what the websites said this syndrome was and our whole world just crushed around us. We both read in silence and looked at each other in disbelief. We were in shock and were trying to hold back our tears. At that same moment, the doorbell rang. (God’s timing) It was my mom and sister coming to take care of Garo. I couldn't move from the chair in front of the computer, so Johnny went to open the door. They could see all over Johnny’s face that something was wrong. He couldn't even speak. They came in and we told them what we had read and what was going on. By the Lord's strength, they both were our rock that night. They were in shock too, yet they turned it over to the Lord. They told us the Lord is with us, and with this baby, and for us not to worry. Of course, they were concerned as well, but we are in awe of God's timing. God’s timing! For me not to have to read about this by myself, and have Johnny there while reading. God's timing! For bringing mom and Lara to our front door at the exact moment we needed them. We didn't realize it at the time, but it was all God's perfect timing!
THE WORD OF KNOWLEDGE:
My dad was on a business trip in South Carolina the day we found out about the baby’s heart problem. That night, when my mom and sister went home, they called dad to let him know about what we were told about the baby. He was sad to hear such bad news, especially while he was away from the family. After he got off of the phone, he turned on the television and noticed that the 700 Club show was on. He listened in and they were just starting to pray at the end of their program for people’s needs. Dad prayed along with them. The next moment, the woman on the show said that there’s someone who’s pregnant and just got some bad news from the doctor about their baby. Maybe some have even suggested abortion. It’s not what the doctors think it is. God is telling you “Trust in Me, just Trust in Me.”
God’s timing once again had taken care of us. At the time we found out the bad news, from that moment on, we kept being built up and given hope, over and over again. When you are able to trust God and what He will do for you, you will see how He takes care of you day by day. My dad reached out in prayer, and God met him that night, in the power of Jesus’ name, to let us all know it will be ok.
THE APPOINTMENTS:
There was appointment after appointment of specialists that we saw. With over eight different doctors looking at the baby’s heart and all saying the same thing-- the left side of the heart is too small. The very first appointment was one of the worst. The doctor who read the ultrasound told us, “there is a hole here, and this valve is too small, this ventricle is too small, not enough blood flow is going through, maybe blood is mixing,” etc. etc. Just listing off every bad thing you can think of and concluding that this baby has an abnormal heart. She also mentioned that many times, babies that have abnormal hearts can be an indicator that they might also have a chromosomal abnormality which would include Down Syndrome. Things definitely were not looking good. But once again the Lord sent someone to give us a glimmer of hope. The doctor called in one of her colleagues who was much more optimistic. He agreed with what she was seeing but added, “at least everything is there, it’s just too small or not quite where it needs to be.” That was one positive thing we could take with us from that appointment. At least all the parts are there, nothing is necessarily missing. Things just aren’t the way they should be in a baby’s heart.
The next appointment was with the same doctors who did the ultrasound again. This time, they had one of their pediatric cardiologists come to look at the ultrasound as well. The Lord once again calmed our nerves before we even went into this appointment. The moment before we left the house, I turned to my daily calendar to read the verse for the day. God once again spoke to us. The verse was Malachi 4:2, “But unto you that fear my name shall the Sun of righteousness arise with healing in his wings…” When they looked at the ultrasound again, this time with the pediatric cardiologist, things seemed a little bit better. The pediatric cardiologist looked at the ultrasound, studying what he was seeing on the screen. He turned to us and said, “Well, I just ruled out 40 of the worst things that it is not.” “whew!” What a relief! He agreed with perinatologists that this is a hypoplastic left heart. But instead of hearing so much of the negative like our first appointment, this doctor started telling us some positive things he was seeing. Some of the valves seemed to be a good size compared to what he was expecting and so on. We were relieved!
GOD’S TIMING FOR COMFORT
There was another work of the Lord that happened when I had dinner with some of my high school friends that I still keep in touch with. One of these friends has had some heart issues since we were in high school. I never knew what it specifically was until that night when I told my friends what was going on with our baby. It turned out that my friend had a similar type of condition, except it was much worse. She actually didn’t have a chamber wall in her heart when she was born! I couldn’t believe what I was hearing. Once again, the Lord comforted us in knowing that if my friend had surgery on her heart almost 30 years ago and my friend is doing absolutely fine, then our baby will be okay too.
One of my other friends is a nurse. She asked me who the pediatric cardiologist was that would be helping us. I told her the name of the doctor, and she was so happy! She told me that she works with the same doctor and that he is a GREAT doctor!!!! My friend even took care of infant patients with this type of heart problem! What a comfort the Lord sends us right when we need it! God sent us the comfort of knowing that this doctor was credible, not just a doctor out of the blue! He sends the right people our way to comfort us in our time of need and it is exciting to see Him work specifically in your life.
ON A SIDE NOTE…
It was open enrollment at the bakery (Johnny’s work) for insurance. We have always had HMO insurance. Before we even knew anything about the baby we had discussed about switching to PPO. When we found out about the baby, it was a sure thing we would be switching to PPO. This can only be done during open enrollment. We found out the news about the baby in October, and it was also open enrollment in October. We could switch to PPO and have the benefit of any doctor or specialist we would like during this process. Having PPO insurance was effective November 1, 2008. This was the same month when we started seeing many doctors for ultrasounds to see what is happening with the baby. God’s perfect timing strikes again!
THE SECOND SIGN - THE BABY IS FINE
God comforted us with the Word of Knowledge through a TV program that the baby is going to be okay, and to just trust in the Lord. Well, the Lord did it again! He speaks through people, and you know it’s Him speaking to you when it cuts into your soul. You know without a doubt God is speaking to you. Here is what I had written on what happened November 16th:
Steven went to Rock Harbor Church tonight. They were speaking about the Holy Spirit and how the Holy Spirit is a person. They asked everyone to pray and the Pastor told everyone he senses there are people with hardened hearts. If that is you, stand up and have the people around you lay hands on you and pray. Steven had been praying for five or six things, one of them being this pregnancy and the baby. The last thing he prayed is for the Lord to show him His power and the power of the Holy Spirit. Just about two minutes later someone to the left of him who was praying started to get loud. He was praising God with a medium loud voice, but then he started yelling in a very strange way and very loudly saying he has a vision, God is giving him a vision….”The doctors are wrong, the doctors are wrong, I don’t care what the doctors say! The child is fine, there is nothing wrong.” Steven couldn’t believe what he was hearing. At first, he thought that the guy was crazy, but then he realized what had just happened. Steven had just been praying, and God was speaking!
The same thing happened when my dad was praying. The Lord spoke and answered in the next few moments after praying specifically for the situation.
The weird thing about this was that Rock Harbor is not a charismatic type of church. Things like that usually do not happen in that church. It was something totally out of the ordinary. Also, Rock Harbor is a church filled with young people. Most of the people that come to that church are in college. It’s a room filled with hundreds, if not thousands of college students. Not very many of them would be pregnant, or pregnant with complications.
A pastor was preaching on the radio and said, “You know it’s God speaking to you when you hear something twice. Hearing it again is confirmation that it’s the Lord speaking to you”. This was our second confirmation that the baby will be fine!!!
I had a doctor’s appointment the very next day after this happened. Once again the Lord gave us the comfort we needed to face the doctors once again. At every appointment they would tell us the same thing. “The left side of the heart is too small. The baby will need three major heart operations to re-route everything to make the heart work, not at its full potential, but it would work.” We needed the comfort and faith God was giving us to face these doctor appointments full of grim news.
FEELINGS OF ALL THE DOCTOR APPOINTMENTS
Going to the doctors to get ultrasounds was an interesting experience. Every time we would go in, we would have hopes that everything would be completely fine, but this was never the case. First hearing the news about the baby we felt we were in our deepest valley. Within the hour we were built back up by having faith in the Lord. When we would go to a doctor’s appointment, we were knocked down once again. After those doctors’ appointments we would accept what the doctors were seeing, yet our faith would be built up once again because we knew what the Lord could do, would do, and what He said he will do. Luke 1:37 says, “For with God, nothing shall be impossible.” So we would go again to the doctors’ appointments, and it would be another blow to our faith in what God would do. Month after month, the doctors would tell us bad news. There would be few minor improvements in what they saw in the ultrasound. But it wouldn’t be good enough to have a complete and whole heart in the baby.
Jesus Christ has always been in our lives and we are His children. We looked to Him, prayed to Him, and read His Word, the Bible, during this entire process. The promise He gives us are so true, James 4:8, “Come near to God and He will come near to you.” Because we were in His Word, we were never left knocked down by what the doctors would tell us. Anytime we felt the punch, He lifted us up. He would lift us higher than the time before until we knew without a doubt, that we would see a miracle happen in this child, no matter what the doctors would see or say. God promised it to us, and He never will go back on His promises.
We were not the type of Christians who didn’t listen to the doctors’ advice and tell them they don’t know what they’re talking about. We definitely accepted what was happening in the baby’s heart. It was there in front of us, on the ultrasound screen, in black and white, month after month. We knew this baby had a heart problem. But we also had our faith and hope in Jesus Christ, knowing full well that this baby was in His hands. What better hands to be in, than those of the Father who created him.
THE ARRANGEMENTS
Everything needed to be arranged. I had to switch doctors so the baby could be delivered at St. Joseph’s Hospital (instead of our usual Hoag Hospital) since St. Joseph’s hospital was connected to Children’s Hospital Orange County (CHOC). We were told the baby would be taken straight to CHOC after delivery. We would only have fifteen to twenty minutes with the baby after he was born.
We needed to decide where to have the surgery done. There are only a handful of surgeon’s that do these types of surgeries in Southern California. There was one surgeon in Children’s Hospital Orange County (CHOC), and one in Children’s Hospital Los Angeles (CHLA).
We even had a meeting with the team of doctors and nurses that would be there at time of delivery. Johnny and I walked into a conference room. The room was an empty square space with tables set up in a U Shape. The Doctors and nurses were all around the tables and we sat in front of them to discuss all that would happen at time of delivery. Talk about intimidating! There was a box of tissues placed on the desk in front of us as we sat down. It made us think of all the other patients these doctors see that probably break down from all the pressure and reality of everything happening to them. Because we had the Lord to lean on, we were absolutely fine and didn’t need the tissues!
The meeting consisted of the OB-GYN, the nurses that would be at the delivery, chaplain of the hospital, a social worker, a pediatric cardiologist, and the head nurse of the NICU at CHOC hospital. There were about ten in all. We had many questions and concerns for the doctors in NICU.
1. Would the baby absolutely need the medicine they were planning to give him right away, after birth, which could have the side effect of breathing problems?
2. Couldn’t they do an echocardiogram on the baby first to see his heart and confirm what they had been seeing in utero before giving him this medicine?
3. What are the side effects of this medicine? Babies might have a hard time breathing or stop breathing all together, which in turn would lead to needing a breathing tube.
4. If he needed the breathing tube, then it could cause him to have a hard time eating after it’s taken out, which then would lead to possible feeding tube in his stomach.
There were many issues we were dealing with and trying to make decisions for. There were many questions we needed to ask to try to get the doctors to see our point of view. The doctors do these things all the time, and everything is normal for them….But this was OUR baby we are talking about! So as you can imagine, a parent’s point of view is a little different than the doctors.
These were not easy times to deal with everything we needed to deal with, but God was with us the entire time. Through all the prayers for our family, we actually felt the presence of God with us. So when we were dealing with the difficult decisions, God dampened the difficulties. We didn’t crack under the pressure, which is what should have been happening to us. God was hearing every single prayer from hundreds of people praying for us, even people that don’t even know us.
WHAT MORE LORD???
There was one day that I just HAD to ask the Lord, “What more Lord?” I was about five months pregnant and had a cold and a sore throat.
I had my first appointment to meet with my new doctor who would deliver the baby at St. Joseph’s Hospital. It was a difficult appointment because the doctor told me that this type of heart problem is very hard to deal with. He mentioned that just because this baby has a heart condition, it doesn’t mean any other siblings or future pregnancies will bring the same thing. He went on to tell me that he had another patient who was pregnant with a child with the same heart condition as mine. They decided to have an abortion. They became pregnant again, and their second child had no problems or complications at all. I told the doctor that there is no way I would abort the child. That’s something that I just could not live with and that we would deal with whatever comes as it comes. He told me, “Yes, I know you say that now, but once it comes, it’s very difficult to handle.”
That appointment was hard in itself but after I left to come back home, I was at a stop sign, waiting to turn right. I don’t know what happened, but the car behind me rear ended me while I was waiting. The car didn’t hit too hard, but hard enough to give me a scare. I couldn’t believe what was happening.
Not that it’s important, but a few weeks prior we were parked at the Irvine Spectrum Structure, and the person who parked next to us side swiped the tail end of our van when he was coming out. We didn’t see it happen, but saw the effects of it on our car. And now, I get rear ended.
Side Note: A few weeks after the second incident, I was parked in a parking lot with shopping carts around. I was sitting inside the car getting my things together. All of a sudden I heard a big boom and something had hit the tail of the van AGAIN! There were very high winds that day, when I looked back, I saw a shopping cart just rolling along the parking lot. It had hit my car, and went on to hit someone else’s car. What more Lord??????
Oh, yea….the Lord showed me what more there was. Later, while we had been at the hospital for a week and a half now, we were coming into the structure in the morning to park and see our baby boy. The parking lot was completely full that day, cars everywhere, people backed up and waiting to get a parking spot. As we were waiting for a parking spot, the truck behind us decided to pass us. While he tried to pass, he hit the side of our car. You guessed it, the tail end of the car AGAIN! We just couldn’t believe it!!! Good thing we hadn’t fixed any of the other things at that time. When it rains…it pours.
PART II
THIS IS THE 2ND PART OF THE STORY THROUGH JOHNNY'S EYES:
I had gotten a call from Ida saying that she was pretty sure she was in labor and baby John was on his way. As I got home, we got a few things ready to go to the hospital. The reality sunk in that baby John was on his way and we were going to face, head on, the issue of his heart condition, and all the steps necessary to handle it. The strength in the Lord really kept us strong; we prayed and left the house to go to the hospital. When we got there, they put Ida in a wheelchair and told her that someone would be there to push her to the admitting area. A gentleman from the hospital came to push the wheelchair and we couldn’t believe our eyes. He had a cast on one leg and crutches. We just had to laugh. I mean, it looked like we needed two wheelchairs and I was going to push Ida AND him, but somehow he managed to get us to the admitting area. Looking back at it, I feel like God placed him there so we could get a good laugh to calm us down a little. It worked.
We were admitted to the delivery room and we had one nurse with Ida the whole time. She was getting some last minute information from us and Ida and I were just getting ready for what was to come. They had told us there would be 10-15 people in the room when John is born so they can get him prepped and taken over to Children’s Hospital of Orange County (CHOC). As we were waiting Ida asked about the epidural and the nurse said she notified the anesthesiologist, however, he was in the operating room finishing up with another patient and would be right over. Then IT HAPPENED! Ida starting feeling really uncomfortable and the nurse said “uh oh you are about to deliver”. Not to my surprise that it happened so fast since the same thing happened with Garo‘s delivery. The worst part was it happened so fast that the anesthesiologist still hadn’t shown up. Ida asked if she was still going to get the epidural and the nurse said it’s too late. I wanted to hide when I looked at Ida’s face. She asked can you give me anything and they said it was too late. The doctor and the rest of the staff that was going to be in the room came rushing in. Needless to say Ida was a champ delivering without any pain med or epidural. We later found out that without getting the epidural it actually was more beneficial for John in regards to his heart condition. Again God was in control without us even knowing. John was born at 12:48am, 7lbs even, and 18.5” long. The nurses quickly prepped John and then allowed Ida and I about 20 minutes (although it seemed far less) to hold him. I went outside and grabbed Baba to come in and pray for John before they took him on the short roll through the tunnel to CHOC. I left Ida and walked with the nurses and John towards CHOC. On the way both grandmothers, Steven, Lara, and of course Big Brother Garo were waiting in the hallway and got a chance to see John for 2 seconds as he rolled by. I couldn’t believe Garo was still awake, but he just had to see his little brother. He got very upset though because the nurses did not stop since they had to take John in a hurry, and he didn’t get a chance to see his new baby brother.
John was taken to the NICU at CHOC and they asked me to wait outside while they surgically connected two tubes through his bellybutton for IV and his heart medication (PGE). They also conducted the first ultrasound on him at that time. After about 2 hours they let me back in, and there was John sleeping, connected to so many things, and although I was loving the fact he was finally here, my heart was aching seeing him in this state. I knew the Lord was protecting him and watching over him, but I just wanted to hold him and take him back to Ida. We were able to get his Grandparents, Steven,and Lara in to see him before they left for the night. Garo was asleep and pretty much knocked out right after he got his small, fast glimpse of John. I waited next to John and asked some questions to the nurses on staff. They told me he was doing fine and at the moment he did not need any help breathing. This was great news because we had learned earlier that one of the side effects of PGE is that a baby might stop breathing and need a breathing tube to assist him with it. They also told me that the cardiologist and a couple of other doctors will be looking at the ultrasound results in a few hours. I walked back to St. Joseph’s hospital into Ida’s room where she had been waiting alone this entire time. I let her know what was going on and we finally fell asleep at around 5am.
Later that day we went back to see John and he was doing fine. He was still breathing fine on his own so he did not need the breathing tube. He looked like a little Angel just resting. We were finally able to hold him for the first time after birth! It was great. There were so many wires and tubes connected to him so we had to be careful while holding him. We were waiting for the Cardiologist to let us know the results of the ultrasound as we had faith and knew God was watching over John. Later on that day as we were in our room, and we had family with us, Dr. Swensson, John’s Pediatric Cardiologist, came into the room to discuss what they saw in the ultrasound. He mentioned that John still needed surgery, however, he considered his case as hypo plastic variant. What he meant is that although John’s left side of his heart was small, everything was there and they could possibly try to keep his heart a normal 2 ventricle heart instead of going through the 3 stage surgery to make it a 1 ventricle heart. If thy kept it a normal 2 ventricle heart there would be no guarantees of if his heart would be able to handle it or not. So they were still suggesting the 3 stage surgery since that is the safest outcome. He mentioned that John had them puzzled. We knew that God was still working his miracle. He mentioned that a group of doctors will be meeting in the morning to discuss the case again and he would be back to let us know what they thought. We knew John was still going to be ok because he was in the Father’s hands.
The following morning Dr. Swensson came back to our room. He mentioned that the group of doctors met, and they were split on how to handle John. He mentioned that since we had planned to transfer John to Children’s Hospital of Los Angeles (CHLA) to do the surgery there, they will just wait to see what their doctors had to say. Ida and I again knew that God was still taking care of the situation. We got a call from the transport team that was going to take John to CHLA. They wanted to use a helicopter to transfer him so they wouldn’t need to deal with the traffic in case something happened on the way. They also mentioned that I would be able to go along for the ride. My first helicopter ride. We saw John again and he still had no need for the breathing tube. They did mention that when they transport him they usually put on the breathing tube in case something happens while in flight it would be very difficult to do it in the air. As the helicopter team prepped up, John was doing so well, they allowed him on the helicopter just on room air no breathing tube. Again God was in control. Don’t get me wrong. It isn’t that we wouldn’t allow or were against the breathing tube; it’s just that, since John was not able to be fed because of the heart surgery, placing a breathing tube in him would be a big reason why babies have the toughest time feeding later on and might require a feeding tube because of it. We got on the helicopter and the whole crew was so nice. Ida waved me goodbye and we were off. The Helicopter ride was great and fast. When we landed at CHLA I called Ida and she had just gotten back to her room. Orange County to LA in 10 minutes, I could get used to that (um Ida we need a helicopter).
Once they took John to the CTICU at CHLA, they performed another ultrasound on him. All the tubes and sensors were connected to him again. Ida was going to meet me later that night at CHLA so I just sat next to John. They constantly had doctors doing their rounds in and out of the CTICU. We were in a room with 3 other babies, and 2/3 of the other babies were also from Orange County. I knew we were in the right place for John, and everyone kept talking about how good Dr. Starnes (the Surgeon) was. The ultrasound was done and I was just hanging around with John. Steven Wilson was there with me as he is a Chaplain at CHLA. It felt good to have a familiar face there. God just really comforted us time and time again in so many ways without us even knowing it. As we mentioned earlier, God always seemed to place someone by us at the right time. Ida came out of the hospital in Orange County. Went home to pack some things for us, and met me at CHLA at about 1am.
We had hundreds of questions for every doctor we would meet. Since we still felt God was going to perform a miracle on John, we wanted to know how they were going to proceed with the surgery. The pediatric cardiologists all said that his left side of his heart was still too small to keep it a bi- ventricle heart and that the 3 stage surgery was still what they were planning on performing. His mitral valve was 5 standard deviations smaller than what it should have been, and in their eyes, they couldn’t see how it would be anything different than the 3 stage procedure. I kept asking if the mitral valve could grow before the surgery and they kept saying no, it is what it is. The mitral valve wouldn’t grow in this small amount of time if it hadn’t grown already. The measurement was at 5.6mm. I pressed them to do another ultrasound because we had a few days before surgery and I wanted to make sure we had a chance to see his measurements again. Again, I was met with resistance as they said it (mitral valve opening) will not grow. I asked the doctor, if it was his son, would he want an ultrasound done again? His response back to me was that was a personal question. So I told him we want it done one more time. He finally agreed reluctantly. I was going nuts because it would only take them about 10 minutes to do it and I could care less about the cost of doing another ultrasound. God was going to take care of John and we knew he would not need the 3 stage surgery. It was Thursday when they did the ultrasound they mentioned that the doctors will look it over and get back to us before we left for the night. It was 11pm and we were ready to go to the hotel and no one had spoken to us. We went to the doctor in charge at the CTICU and asked him if he had any results from the ultrasound. He checked John’s file on the computer and he mentioned that they measured the mitral valve between 6.7mm and 7.3mm (The last ultrasound measured at a 5.6mm). When he said that Ida and I smiled and said wow, it DID grow. The doctor new us and before we could say anything else, he said there is a 1mm to 1.5 mm variance with ultrasound pictures. Looking at this previous measurement of 5.6mm, he said it still falls into the same category of procedure. In my mind, the ultrasound with variance could have also shown a smaller size of the mitral valve at a 4.6mm reading. I knew God was working on John at His time, not ours. Regardless of what the doctor said we left that night happy.
SUCH A HARD DAY!
The following day was a pretty busy one. We had not been able to eat lunch because doctors would show up at different times and we wouldn’t want to miss talking to them and asking questions. We were finally ready to get some lunch at 3pm when a doctor we hadn’t seen before came to us and asked us to sign the consent form to do the 3 stage surgery for John. Now understand, at this point we were still waiting for the doctors or nurse to speak to us about the last ultrasound and the discussion the team of doctors had about John. They were going to let us know if they thought they would be able to keep his heart as a normal 2-ventricle heart, which they had said might be a possibility, or have to have the 3 stage surgery to have his heart be a 1 ventricle heart. We tried to explain this to the doctor, but she kept saying, oh no, he has hypo plastic left heart syndrome and we HAVE to do the 3 stage procedure (basically it’s not even a question). She was looking at us like we had no idea what was going on and we were parents in denial about our baby’s situation. Ida and I were in shock. She wouldn’t even hear us out about not being consulted about their findings from the ultrasound. I was half heartedly reading the consent form while Ida was trying to explain to her that we are caught off guard and were not expecting this. At this point, we couldn’t even think straight, especially since we were hungry. We told her we are going to lunch and will speak about it after we get back. She said, oh don’t worry, just sign it and if you have questions you can ask us later. I again told her no, we are going to lunch and will ask questions when we get back. She finally said ok.
We were walking out of the CTICU and in the hallway we saw the doctor who I had called the night Ida was going into labor. He saw us with shocked looks on our faces and he came up to us and asked if everything was ok. We told him what had just happened and he tried to calm us down. He let us know that if that’s what Dr. Starnes recommends you can be sure he knows what he’s talking about and trust that it’s the right decision. Dr. Starnes is the best in the business and we can trust him. I told him that we told that doctor we would come after lunch and sign the paperwork and ask more questions, and he said, good for you! If it was his son, he probably would want to hit one of the doctors. He said he would talk to the doctors for us.
At the same time this was all happening, Steven (Ida’s brother), was on his way to come see us at the hospital. It just so happened that as we were walking down the hallway to go to lunch, we saw Steven walking across the end of the hallway! What timing! We all went to the cafeteria for lunch but could barely eat. Once again God had placed the right people at the right time to comfort us.
John was going to need blood during the surgery and we were not sure what his blood type was. Steven and I both went to the blood donor area at the hospital to donate blood. We were the last ones in and boy was it a circus. Steven and I walked into a room where they ask some questions and do a quick prick on the finger to analyze our blood. The guy that was working on Steven was a pretty big guy. He asked if Steven was nervous. Steven laughed and turned to me and in Armenian said I am scared of him, not what is happening. We laughed. The guy attempted to prick Stevens’s finger, and wouldn’t you know it, no blood came out. He squeezed Stevens’s finger again and nothing came out. We really started laughing then. Finally I had already started donating blood and Steven came in to the room on the chair next to mine. We both had decided to see how fast we can drain our blood. They asked us to squeeze a ball every 3-5 second that they placed in our hands to help with the flow. I was squeezing it every second, and so Steven did the same. The guy came back to see how Steven was doing and couldn’t believe how much blood Steven produced in such short time. We were laughing again and then finally left when it was done. Steven ended up with a big bruise on his arm, and I had a tingling pain in my arm for about 2 weeks. We said bye to Steven and walked back to the CTICU.
Before we even got into John’s room a nurse came up to Ida and said, the doctor says not to sign the form until she comes and talks to you. Hmm, that’s surprising. The same doctor, who wanted us to sign the paper, came back and told us we raised some good questions and comments and told us she spoke to some other doctors and they agreed that it still was not a clear cut case. So she added another procedure on the consent form that would allow the surgery to be a bi-ventricle repair, if the heart would be able to handle it. I think she just added that to appease us.
You see, since we asked a lot of questions and had a lot of faith that God was going to take care of John, all the doctors thought we were pushing for a bi-ventricle repair. We just wanted what was best for John and we wanted to be informed and make sure every doctor handling John’s situation was informed as well. If they came to us and said we looked at everything and here is what we see, and this is how we want to proceed we would not object as the surgeon and doctors know better than we do. However, after they kept telling us it could either be a bi-ventricle repair or the 3 stage procedure, and then without any discussion with us, they are telling us no, its only a 3 stage surgery, we just didn’t feel right. We were mentally and physically drained that day. The doctors told us that they would scan his heart the day of the surgery and check the measurements again right before surgery. That was a big relief.
On Saturday, my Brother Greg came to see us and he wanted to also donate blood for John. We went to the blood donor area and they said he couldn’t donate because they had closed just a few minutes ago. It was very strange that they would turn people away when they try so hard just to get people in to donate blood. We left really angry and frustrated as we wanted enough blood for John as necessary. Greg tried everything he could to get them to take his blood to be used during the surgery for John. He asked the nurse at the CTICU if we could donate somewhere else and still use it. She said there wasn’t enough time. The blood has to pass certain screenings to be used. Needless to say this was just more headache than we needed.
Ida and I just prayed and prayed and prayed that God just places the right people to care for John, and gives them wisdom above their own knowledge to care for him. God really just comforted us and took care of us. We kept hearing of so many people praying for John all over the world. We were amazed and knew God’s glory was going to be revealed in the miracle he was going to do in John.
The morning of the surgery came. The surgeon came into the room and spoke to Ida and I about the surgery. He mentioned that the heart was borderline and if we were to leave it as a bi-ventricle repair the outcome would be in doubt, and if in a week they see his heart is not doing alright they would have to go in and do another open heart surgery on him. His heart would be really taxed and chances are he wouldn’t be able to handle second surgery so soon. He said that he feels very confident that John is a great candidate for the 3 stage surgery which would leave him with one ventricle. We told him, if you feel that way, do what you have to do for us to have John in our lives. So he left and Ida and I really didn’t say much, we just prayed. The anesthesiologist came in to take John to the operating room. We walked out with her as she rolled John to the operating room. That was a very tough moment, as we knew what was coming, and we had to trust that the Lord has placed us in the hands of the right doctors. The nurse told us that once they took him off the heart bypass machine she would let us know, and that the surgeon would be in after the surgery is over. It was supposed to take about 5 hours before John came back. We went downstairs for some breakfast with our family. We prayed together and went back to the waiting room. My father-in-law, Steven, and Luther, Ida’s mom’s cousin, prayed together on their own as we waited. The nurse came in quicker than we thought, and told us that he was off the bypass machine. We didn’t think much about it. Half an hour later the surgeon came in and said the surgery is over and they are bringing John back to the CTICU. Everything went so fast. I asked how the surgery went. The doctor said, good, and we ended up doing a bi-ventricle repair. We couldn’t believe our ears. I asked him about the mitral valve and he said it was larger than we expected. It measured at least 9mm. He said John will not need any more surgeries. He will have his whole heart. We all were overcome with so much Joy. God was so good. We just knew He was going to take care of John. So the only thing they repaired was the aortic arch, they made it larger, and patching a whole in his septum. Praise the Lord they did not need to mess with anything else!!!
They told us that when John goes back to the CTICU his chest will still be open and it’s not a pretty site. After surgery the body gets swollen and they can’t close his chest until the swelling goes down. Ida and I went in to see John and sure enough they had clear plastic over his chest but it was open. He had so many tubes going in and out of him it looked surreal. We were so happy that all that was secondary. He is going to have a WHOLE HEART! To God be the Glory!
The nurses told us the next few days would be a rollercoaster, and they were right. We weren’t out of the woods yet, as Johns heart rate was very high. We were told that typically, a baby’s heart rate would be high after heart surgery. So we weren’t as nervous, however, his heart rate was at 280 beats a minute when the normal should be closer to 140 – 160 beats a minute. The doctors gave him medication to try and slow it down and they got it down to about 200 beats a minute. Even with the medication going, his heart rate kept going up and they mentioned they have given him a full dose and now we just had to wait for it to take effect. The doctor in charge came in and started placing a bag of ice on John’s chest to see if that would help. Slowly his heart rate started to come down. They had him on about 15 different machines giving medications and IV. We just were so happy and relieved to see him recover the way he was supposed to. All of this didn’t happen within minutes, it took a few hours, so you can just imagine how Ida and I felt. It was getting close to the time when we would leave the hospital for the night and of course his heart rate was still high but not at the 280 rate. Now is when the FUN began.
The hardest night of sleep or should I say short naps was that night. There was so much in our minds of how he was going to handle his first night. Was there going to be complications with the actual heart? Is the nurse attending John a good nurse? Is his heart rate going to continue to go down or race back up? We knew that God has gotten us this far and all we had to do was keep relying on Him to take care of John, even when we couldn’t be next to him.
We knew he would place the right people to care for John. That was the one constant with what we were facing. God always put the right people at the right times in front of us. Relying on Him and watching Him fulfill His promise, “that it isn’t what the doctors think it is, the baby will be fine”, was just amazing, and most importantly comforting. Every night before we would leave one of his readings (heart rate, saturation, blood pressure..) would start to reach a point that was not the norm. It never failed and we both knew the devil just wanted to give us a hard time before we left. We knew that God was in control, but every night without fail the devil would give us something to think about when we left.
Every morning when we came back to the John’s room we saw that he was doing just fine. The first two days were tough as he had tubes running out of his chest for drainage of fluid, wires that lead to an external pacemaker, his breathing tube down his throat and of course the open chest. They were filling him with so much fluid to help with the heart rate and pressure, that he began to puff up like the Michelin man. That alone was very difficult to see. As time went on, he recovered very well. When the doctors would make their rounds, they were very delighted to see John doing well, especially since he had a bi-ventricle repair and didn’t go through the 3 stage surgery. The doctors were never sure how his heart would hold up. It felt so good to hear the doctors say, he was doing so well. His swelling slowly came down, and they finally gave us the news that they wanted to close up his chest. We asked the doctors if he would feel any pain while they stitched up his chest and pulled out the tubes that were in his chest, and they said he will feel some pain, but he will be medicated. So at the same time we knew this had to happen, we just prayed that God will help him suffer as little pain as possible during the procedure. We all had to leave the room as they prepared to start the procedure of stitching his chest and it was going to take a little over an hour. When we came back in, we were delighted to see the tubes gone and his chest closed up. He was slowly looking like our sweet little baby John again.
John was still heavily medicated so he was not awake. His readings were all beginning to normalize, and we just couldn’t wait for the breathing tube and his external pacemaker to be removed. The doctors came by for their rounds and they said his breathing tube would be removed that day. We were so happy, as the longer the breathing tube stayed in it would be harder for him to bottle feed because it would irritate his throat. They mentioned that when they pull the breathing tube, he would feel discomfort for a bit and probably would let out a very hoarse soft cry. As they prepared to remove the breathing tube, Ida and I were in prayer that this would go smoothly. As they pulled out the tube, we saw the greatest thing. John’s face shriveled up, turned beet red, mouth opened and you would think you would hear this loud angry cry, but just like the doctors said his cry was hoarse and barely audible. It was sad and adorable all at the same time. The most important thing was that he was getting better. The doctors made their rounds again tried unplugging his pacemaker. His heart was still not beating the way they wanted. They could not see the separate P-wave on the echo. They said it was there but his heart was still not in the right rhythm. They were going to give him about 7 days for his hearts rhythm to correct itself, or they said he might have to go home with the pacemaker attached. Again everything was going well and the devil is still trying to take away our happiness with worry.
Day after day the doctors would come by and turn off the pacemaker and it still wasn’t beating the way they wanted it to beat. The good news was that they weren’t worried about it, so that helped us out as well. Slowly they reduced the amount of machines giving medications to John . It was a sight to see the rack full of machines for his medications and IV’s to the point where they put some around his bed because there was no room on the rack. Now the rack was starting to have some empty spots. We felt so happy when they would come by and say they would be removing more. We were able to start holding John again. It felt so good to have him in our arms again. It felt so good to know that we would be getting him out of there and home where he belonged. The next step was for him to start trying to feed so that we could get out of the CTICU and into the NICU upstairs. The doctor came by and told the nurse to prepare a bottle and see how John will do. They said that he had to drink about 30ml (1 ounce) in about 10 minutes, and whatever else he couldn’t drink to just garbag it, which meant the feeding tube through his nose. We were told that when it came time for John to be released, if he wasn’t feeding from the bottle that he would be sent home with a feeding tube. We wanted John to go home with nothing attached. So as he tried taking his first bottle, he had a hard time. Now remember this was the first time he was actually going to have food since he was born! The 10 minutes went so fast and we kept trying to stall the nurse. She gave us extra time, but at the end of it, he just wasn’t ready yet. So the nurse placed the feeding tube and fed him. We heard the feeding tube could also cause an irritation so we really prayed that John would start feeding on his own soon.
We tried quite a few times during the day to feed him and still he would not take enough. We wondered if the nurse at night would be patient in feeding him or just try and then feed him through the feeding tube. That night we had a nurse we had before and one that really took good care of him as well. We left very comforted. Again God just put the right people in the right place at the right time. When we came back the next morning, John was in a little onesie, and looked so good. That nurse really did such a great job. She mentioned to us that he took more ml’s but still not enough, as everyday they increased the amount he was suppose to drink. When the doctors came by for their rounds, they were happy to hear that he was at least drinking some milk. When we came back from lunch we were very happily surprised to hear that they were able to unplug the external pacemaker. His heart’s rhythm was exactly the way it was supposed to be. They did leave the wires attached even though the pacemaker was off just in case we would need it again. But the way God was taking care of everything, we knew John wouldn’t need the pacemaker again. John was doing so well that they told us as soon as a bed became available in the NICU they would be moving him. The good news was that this was another step closer to getting him home. The bad news was that there would not be one nurse just watching John, but 1 nurse that would be taking care of 4 babies. They said the goal of the NICU was to prepare Ida and I on how to care of John when he gets home. John slowly began drinking enough milk. They removed the feeding tube, which was another great relief. Now the only things left was John’s stitches, the tube in his nose for air and the pacemaker wires.
John was doing so well, and being able to hold him without all those wires was amazing. They lowered the amount of oxygen being supplied through his nose to the bare minimum. They told us he would soon be off that too. As the doctors made their rounds they told us his chest was healing fine and that tomorrow they will remove the stitches and the pacemaker wires. Oh yea they also told us that HE CAN GO HOME TOMORROW!!!!!!!!!!!!!!!!!!!! Praise God! For two people that have gone through what we have, and have not been home for over 15 days, you can only imagine how excited we were. Just letting our family know that he will be coming home was exciting nonetheless the excitement they felt.
John was a warrior. He looked as though nothing had happened at all. They turned off the oxygen to see how John was going to handle it, and there was no problems. John was able to breathe on his own. Again praise God as we did not have to worry about going home with an oxygen tank for John. John had an IV left in his wrist for his last medication, and of course one day before he was to be done the vein bursted and they said they would have to find another vein to put it in. We really didn’t want him to go through another nurse trying to find a vein on him again, and thank God they said he wouldn’t need it. We were so relieved. So the only thing left was the stitches and the pacemaker wires. That night Ida stayed with John as they allowed one parent to stay. She made sure he ate well and that there would be no surprises tomorrow when we can FINALLY TAKE HIM HOME! I came back in the morning to see John in Ida’s arms. She was so happy, and just knowing that its finally time to go home that day, so much pressure was lifted. They told us that John would be on 3 medications when we left, but none specifically for his heart. 2 of the 3 would be temporary. The 3rd one will also be temporary but would last for a few months. They taught us how to prepare the dosages and give them to John. The doctor came by and pulled the stitches out and the pacemaker wires. John was finally FREE! We dressed him in his going home outfit, and finally placed him in the car seat. Getting him in the car and leaving the hospital for the last time was so relieving. Our baby John was going home. Getting home after 16 days felt so good. He actually came home the same day as his ME-BA’s (Medz Baba Grandpa George) birthday. The day was complete as we heard ME-BA say this was the best birthday present he has ever gotten. Thank you God for blessing us through this suffering. The word Faith has a whole new meaning in our lives.
I had gotten a call from Ida saying that she was pretty sure she was in labor and baby John was on his way. As I got home, we got a few things ready to go to the hospital. The reality sunk in that baby John was on his way and we were going to face, head on, the issue of his heart condition, and all the steps necessary to handle it. The strength in the Lord really kept us strong; we prayed and left the house to go to the hospital. When we got there, they put Ida in a wheelchair and told her that someone would be there to push her to the admitting area. A gentleman from the hospital came to push the wheelchair and we couldn’t believe our eyes. He had a cast on one leg and crutches. We just had to laugh. I mean, it looked like we needed two wheelchairs and I was going to push Ida AND him, but somehow he managed to get us to the admitting area. Looking back at it, I feel like God placed him there so we could get a good laugh to calm us down a little. It worked.
We were admitted to the delivery room and we had one nurse with Ida the whole time. She was getting some last minute information from us and Ida and I were just getting ready for what was to come. They had told us there would be 10-15 people in the room when John is born so they can get him prepped and taken over to Children’s Hospital of Orange County (CHOC). As we were waiting Ida asked about the epidural and the nurse said she notified the anesthesiologist, however, he was in the operating room finishing up with another patient and would be right over. Then IT HAPPENED! Ida starting feeling really uncomfortable and the nurse said “uh oh you are about to deliver”. Not to my surprise that it happened so fast since the same thing happened with Garo‘s delivery. The worst part was it happened so fast that the anesthesiologist still hadn’t shown up. Ida asked if she was still going to get the epidural and the nurse said it’s too late. I wanted to hide when I looked at Ida’s face. She asked can you give me anything and they said it was too late. The doctor and the rest of the staff that was going to be in the room came rushing in. Needless to say Ida was a champ delivering without any pain med or epidural. We later found out that without getting the epidural it actually was more beneficial for John in regards to his heart condition. Again God was in control without us even knowing. John was born at 12:48am, 7lbs even, and 18.5” long. The nurses quickly prepped John and then allowed Ida and I about 20 minutes (although it seemed far less) to hold him. I went outside and grabbed Baba to come in and pray for John before they took him on the short roll through the tunnel to CHOC. I left Ida and walked with the nurses and John towards CHOC. On the way both grandmothers, Steven, Lara, and of course Big Brother Garo were waiting in the hallway and got a chance to see John for 2 seconds as he rolled by. I couldn’t believe Garo was still awake, but he just had to see his little brother. He got very upset though because the nurses did not stop since they had to take John in a hurry, and he didn’t get a chance to see his new baby brother.
John was taken to the NICU at CHOC and they asked me to wait outside while they surgically connected two tubes through his bellybutton for IV and his heart medication (PGE). They also conducted the first ultrasound on him at that time. After about 2 hours they let me back in, and there was John sleeping, connected to so many things, and although I was loving the fact he was finally here, my heart was aching seeing him in this state. I knew the Lord was protecting him and watching over him, but I just wanted to hold him and take him back to Ida. We were able to get his Grandparents, Steven,and Lara in to see him before they left for the night. Garo was asleep and pretty much knocked out right after he got his small, fast glimpse of John. I waited next to John and asked some questions to the nurses on staff. They told me he was doing fine and at the moment he did not need any help breathing. This was great news because we had learned earlier that one of the side effects of PGE is that a baby might stop breathing and need a breathing tube to assist him with it. They also told me that the cardiologist and a couple of other doctors will be looking at the ultrasound results in a few hours. I walked back to St. Joseph’s hospital into Ida’s room where she had been waiting alone this entire time. I let her know what was going on and we finally fell asleep at around 5am.
Later that day we went back to see John and he was doing fine. He was still breathing fine on his own so he did not need the breathing tube. He looked like a little Angel just resting. We were finally able to hold him for the first time after birth! It was great. There were so many wires and tubes connected to him so we had to be careful while holding him. We were waiting for the Cardiologist to let us know the results of the ultrasound as we had faith and knew God was watching over John. Later on that day as we were in our room, and we had family with us, Dr. Swensson, John’s Pediatric Cardiologist, came into the room to discuss what they saw in the ultrasound. He mentioned that John still needed surgery, however, he considered his case as hypo plastic variant. What he meant is that although John’s left side of his heart was small, everything was there and they could possibly try to keep his heart a normal 2 ventricle heart instead of going through the 3 stage surgery to make it a 1 ventricle heart. If thy kept it a normal 2 ventricle heart there would be no guarantees of if his heart would be able to handle it or not. So they were still suggesting the 3 stage surgery since that is the safest outcome. He mentioned that John had them puzzled. We knew that God was still working his miracle. He mentioned that a group of doctors will be meeting in the morning to discuss the case again and he would be back to let us know what they thought. We knew John was still going to be ok because he was in the Father’s hands.
The following morning Dr. Swensson came back to our room. He mentioned that the group of doctors met, and they were split on how to handle John. He mentioned that since we had planned to transfer John to Children’s Hospital of Los Angeles (CHLA) to do the surgery there, they will just wait to see what their doctors had to say. Ida and I again knew that God was still taking care of the situation. We got a call from the transport team that was going to take John to CHLA. They wanted to use a helicopter to transfer him so they wouldn’t need to deal with the traffic in case something happened on the way. They also mentioned that I would be able to go along for the ride. My first helicopter ride. We saw John again and he still had no need for the breathing tube. They did mention that when they transport him they usually put on the breathing tube in case something happens while in flight it would be very difficult to do it in the air. As the helicopter team prepped up, John was doing so well, they allowed him on the helicopter just on room air no breathing tube. Again God was in control. Don’t get me wrong. It isn’t that we wouldn’t allow or were against the breathing tube; it’s just that, since John was not able to be fed because of the heart surgery, placing a breathing tube in him would be a big reason why babies have the toughest time feeding later on and might require a feeding tube because of it. We got on the helicopter and the whole crew was so nice. Ida waved me goodbye and we were off. The Helicopter ride was great and fast. When we landed at CHLA I called Ida and she had just gotten back to her room. Orange County to LA in 10 minutes, I could get used to that (um Ida we need a helicopter).
Once they took John to the CTICU at CHLA, they performed another ultrasound on him. All the tubes and sensors were connected to him again. Ida was going to meet me later that night at CHLA so I just sat next to John. They constantly had doctors doing their rounds in and out of the CTICU. We were in a room with 3 other babies, and 2/3 of the other babies were also from Orange County. I knew we were in the right place for John, and everyone kept talking about how good Dr. Starnes (the Surgeon) was. The ultrasound was done and I was just hanging around with John. Steven Wilson was there with me as he is a Chaplain at CHLA. It felt good to have a familiar face there. God just really comforted us time and time again in so many ways without us even knowing it. As we mentioned earlier, God always seemed to place someone by us at the right time. Ida came out of the hospital in Orange County. Went home to pack some things for us, and met me at CHLA at about 1am.
We had hundreds of questions for every doctor we would meet. Since we still felt God was going to perform a miracle on John, we wanted to know how they were going to proceed with the surgery. The pediatric cardiologists all said that his left side of his heart was still too small to keep it a bi- ventricle heart and that the 3 stage surgery was still what they were planning on performing. His mitral valve was 5 standard deviations smaller than what it should have been, and in their eyes, they couldn’t see how it would be anything different than the 3 stage procedure. I kept asking if the mitral valve could grow before the surgery and they kept saying no, it is what it is. The mitral valve wouldn’t grow in this small amount of time if it hadn’t grown already. The measurement was at 5.6mm. I pressed them to do another ultrasound because we had a few days before surgery and I wanted to make sure we had a chance to see his measurements again. Again, I was met with resistance as they said it (mitral valve opening) will not grow. I asked the doctor, if it was his son, would he want an ultrasound done again? His response back to me was that was a personal question. So I told him we want it done one more time. He finally agreed reluctantly. I was going nuts because it would only take them about 10 minutes to do it and I could care less about the cost of doing another ultrasound. God was going to take care of John and we knew he would not need the 3 stage surgery. It was Thursday when they did the ultrasound they mentioned that the doctors will look it over and get back to us before we left for the night. It was 11pm and we were ready to go to the hotel and no one had spoken to us. We went to the doctor in charge at the CTICU and asked him if he had any results from the ultrasound. He checked John’s file on the computer and he mentioned that they measured the mitral valve between 6.7mm and 7.3mm (The last ultrasound measured at a 5.6mm). When he said that Ida and I smiled and said wow, it DID grow. The doctor new us and before we could say anything else, he said there is a 1mm to 1.5 mm variance with ultrasound pictures. Looking at this previous measurement of 5.6mm, he said it still falls into the same category of procedure. In my mind, the ultrasound with variance could have also shown a smaller size of the mitral valve at a 4.6mm reading. I knew God was working on John at His time, not ours. Regardless of what the doctor said we left that night happy.
SUCH A HARD DAY!
The following day was a pretty busy one. We had not been able to eat lunch because doctors would show up at different times and we wouldn’t want to miss talking to them and asking questions. We were finally ready to get some lunch at 3pm when a doctor we hadn’t seen before came to us and asked us to sign the consent form to do the 3 stage surgery for John. Now understand, at this point we were still waiting for the doctors or nurse to speak to us about the last ultrasound and the discussion the team of doctors had about John. They were going to let us know if they thought they would be able to keep his heart as a normal 2-ventricle heart, which they had said might be a possibility, or have to have the 3 stage surgery to have his heart be a 1 ventricle heart. We tried to explain this to the doctor, but she kept saying, oh no, he has hypo plastic left heart syndrome and we HAVE to do the 3 stage procedure (basically it’s not even a question). She was looking at us like we had no idea what was going on and we were parents in denial about our baby’s situation. Ida and I were in shock. She wouldn’t even hear us out about not being consulted about their findings from the ultrasound. I was half heartedly reading the consent form while Ida was trying to explain to her that we are caught off guard and were not expecting this. At this point, we couldn’t even think straight, especially since we were hungry. We told her we are going to lunch and will speak about it after we get back. She said, oh don’t worry, just sign it and if you have questions you can ask us later. I again told her no, we are going to lunch and will ask questions when we get back. She finally said ok.
We were walking out of the CTICU and in the hallway we saw the doctor who I had called the night Ida was going into labor. He saw us with shocked looks on our faces and he came up to us and asked if everything was ok. We told him what had just happened and he tried to calm us down. He let us know that if that’s what Dr. Starnes recommends you can be sure he knows what he’s talking about and trust that it’s the right decision. Dr. Starnes is the best in the business and we can trust him. I told him that we told that doctor we would come after lunch and sign the paperwork and ask more questions, and he said, good for you! If it was his son, he probably would want to hit one of the doctors. He said he would talk to the doctors for us.
At the same time this was all happening, Steven (Ida’s brother), was on his way to come see us at the hospital. It just so happened that as we were walking down the hallway to go to lunch, we saw Steven walking across the end of the hallway! What timing! We all went to the cafeteria for lunch but could barely eat. Once again God had placed the right people at the right time to comfort us.
John was going to need blood during the surgery and we were not sure what his blood type was. Steven and I both went to the blood donor area at the hospital to donate blood. We were the last ones in and boy was it a circus. Steven and I walked into a room where they ask some questions and do a quick prick on the finger to analyze our blood. The guy that was working on Steven was a pretty big guy. He asked if Steven was nervous. Steven laughed and turned to me and in Armenian said I am scared of him, not what is happening. We laughed. The guy attempted to prick Stevens’s finger, and wouldn’t you know it, no blood came out. He squeezed Stevens’s finger again and nothing came out. We really started laughing then. Finally I had already started donating blood and Steven came in to the room on the chair next to mine. We both had decided to see how fast we can drain our blood. They asked us to squeeze a ball every 3-5 second that they placed in our hands to help with the flow. I was squeezing it every second, and so Steven did the same. The guy came back to see how Steven was doing and couldn’t believe how much blood Steven produced in such short time. We were laughing again and then finally left when it was done. Steven ended up with a big bruise on his arm, and I had a tingling pain in my arm for about 2 weeks. We said bye to Steven and walked back to the CTICU.
Before we even got into John’s room a nurse came up to Ida and said, the doctor says not to sign the form until she comes and talks to you. Hmm, that’s surprising. The same doctor, who wanted us to sign the paper, came back and told us we raised some good questions and comments and told us she spoke to some other doctors and they agreed that it still was not a clear cut case. So she added another procedure on the consent form that would allow the surgery to be a bi-ventricle repair, if the heart would be able to handle it. I think she just added that to appease us.
You see, since we asked a lot of questions and had a lot of faith that God was going to take care of John, all the doctors thought we were pushing for a bi-ventricle repair. We just wanted what was best for John and we wanted to be informed and make sure every doctor handling John’s situation was informed as well. If they came to us and said we looked at everything and here is what we see, and this is how we want to proceed we would not object as the surgeon and doctors know better than we do. However, after they kept telling us it could either be a bi-ventricle repair or the 3 stage procedure, and then without any discussion with us, they are telling us no, its only a 3 stage surgery, we just didn’t feel right. We were mentally and physically drained that day. The doctors told us that they would scan his heart the day of the surgery and check the measurements again right before surgery. That was a big relief.
On Saturday, my Brother Greg came to see us and he wanted to also donate blood for John. We went to the blood donor area and they said he couldn’t donate because they had closed just a few minutes ago. It was very strange that they would turn people away when they try so hard just to get people in to donate blood. We left really angry and frustrated as we wanted enough blood for John as necessary. Greg tried everything he could to get them to take his blood to be used during the surgery for John. He asked the nurse at the CTICU if we could donate somewhere else and still use it. She said there wasn’t enough time. The blood has to pass certain screenings to be used. Needless to say this was just more headache than we needed.
Ida and I just prayed and prayed and prayed that God just places the right people to care for John, and gives them wisdom above their own knowledge to care for him. God really just comforted us and took care of us. We kept hearing of so many people praying for John all over the world. We were amazed and knew God’s glory was going to be revealed in the miracle he was going to do in John.
The morning of the surgery came. The surgeon came into the room and spoke to Ida and I about the surgery. He mentioned that the heart was borderline and if we were to leave it as a bi-ventricle repair the outcome would be in doubt, and if in a week they see his heart is not doing alright they would have to go in and do another open heart surgery on him. His heart would be really taxed and chances are he wouldn’t be able to handle second surgery so soon. He said that he feels very confident that John is a great candidate for the 3 stage surgery which would leave him with one ventricle. We told him, if you feel that way, do what you have to do for us to have John in our lives. So he left and Ida and I really didn’t say much, we just prayed. The anesthesiologist came in to take John to the operating room. We walked out with her as she rolled John to the operating room. That was a very tough moment, as we knew what was coming, and we had to trust that the Lord has placed us in the hands of the right doctors. The nurse told us that once they took him off the heart bypass machine she would let us know, and that the surgeon would be in after the surgery is over. It was supposed to take about 5 hours before John came back. We went downstairs for some breakfast with our family. We prayed together and went back to the waiting room. My father-in-law, Steven, and Luther, Ida’s mom’s cousin, prayed together on their own as we waited. The nurse came in quicker than we thought, and told us that he was off the bypass machine. We didn’t think much about it. Half an hour later the surgeon came in and said the surgery is over and they are bringing John back to the CTICU. Everything went so fast. I asked how the surgery went. The doctor said, good, and we ended up doing a bi-ventricle repair. We couldn’t believe our ears. I asked him about the mitral valve and he said it was larger than we expected. It measured at least 9mm. He said John will not need any more surgeries. He will have his whole heart. We all were overcome with so much Joy. God was so good. We just knew He was going to take care of John. So the only thing they repaired was the aortic arch, they made it larger, and patching a whole in his septum. Praise the Lord they did not need to mess with anything else!!!
They told us that when John goes back to the CTICU his chest will still be open and it’s not a pretty site. After surgery the body gets swollen and they can’t close his chest until the swelling goes down. Ida and I went in to see John and sure enough they had clear plastic over his chest but it was open. He had so many tubes going in and out of him it looked surreal. We were so happy that all that was secondary. He is going to have a WHOLE HEART! To God be the Glory!
The nurses told us the next few days would be a rollercoaster, and they were right. We weren’t out of the woods yet, as Johns heart rate was very high. We were told that typically, a baby’s heart rate would be high after heart surgery. So we weren’t as nervous, however, his heart rate was at 280 beats a minute when the normal should be closer to 140 – 160 beats a minute. The doctors gave him medication to try and slow it down and they got it down to about 200 beats a minute. Even with the medication going, his heart rate kept going up and they mentioned they have given him a full dose and now we just had to wait for it to take effect. The doctor in charge came in and started placing a bag of ice on John’s chest to see if that would help. Slowly his heart rate started to come down. They had him on about 15 different machines giving medications and IV. We just were so happy and relieved to see him recover the way he was supposed to. All of this didn’t happen within minutes, it took a few hours, so you can just imagine how Ida and I felt. It was getting close to the time when we would leave the hospital for the night and of course his heart rate was still high but not at the 280 rate. Now is when the FUN began.
The hardest night of sleep or should I say short naps was that night. There was so much in our minds of how he was going to handle his first night. Was there going to be complications with the actual heart? Is the nurse attending John a good nurse? Is his heart rate going to continue to go down or race back up? We knew that God has gotten us this far and all we had to do was keep relying on Him to take care of John, even when we couldn’t be next to him.
We knew he would place the right people to care for John. That was the one constant with what we were facing. God always put the right people at the right times in front of us. Relying on Him and watching Him fulfill His promise, “that it isn’t what the doctors think it is, the baby will be fine”, was just amazing, and most importantly comforting. Every night before we would leave one of his readings (heart rate, saturation, blood pressure..) would start to reach a point that was not the norm. It never failed and we both knew the devil just wanted to give us a hard time before we left. We knew that God was in control, but every night without fail the devil would give us something to think about when we left.
Every morning when we came back to the John’s room we saw that he was doing just fine. The first two days were tough as he had tubes running out of his chest for drainage of fluid, wires that lead to an external pacemaker, his breathing tube down his throat and of course the open chest. They were filling him with so much fluid to help with the heart rate and pressure, that he began to puff up like the Michelin man. That alone was very difficult to see. As time went on, he recovered very well. When the doctors would make their rounds, they were very delighted to see John doing well, especially since he had a bi-ventricle repair and didn’t go through the 3 stage surgery. The doctors were never sure how his heart would hold up. It felt so good to hear the doctors say, he was doing so well. His swelling slowly came down, and they finally gave us the news that they wanted to close up his chest. We asked the doctors if he would feel any pain while they stitched up his chest and pulled out the tubes that were in his chest, and they said he will feel some pain, but he will be medicated. So at the same time we knew this had to happen, we just prayed that God will help him suffer as little pain as possible during the procedure. We all had to leave the room as they prepared to start the procedure of stitching his chest and it was going to take a little over an hour. When we came back in, we were delighted to see the tubes gone and his chest closed up. He was slowly looking like our sweet little baby John again.
John was still heavily medicated so he was not awake. His readings were all beginning to normalize, and we just couldn’t wait for the breathing tube and his external pacemaker to be removed. The doctors came by for their rounds and they said his breathing tube would be removed that day. We were so happy, as the longer the breathing tube stayed in it would be harder for him to bottle feed because it would irritate his throat. They mentioned that when they pull the breathing tube, he would feel discomfort for a bit and probably would let out a very hoarse soft cry. As they prepared to remove the breathing tube, Ida and I were in prayer that this would go smoothly. As they pulled out the tube, we saw the greatest thing. John’s face shriveled up, turned beet red, mouth opened and you would think you would hear this loud angry cry, but just like the doctors said his cry was hoarse and barely audible. It was sad and adorable all at the same time. The most important thing was that he was getting better. The doctors made their rounds again tried unplugging his pacemaker. His heart was still not beating the way they wanted. They could not see the separate P-wave on the echo. They said it was there but his heart was still not in the right rhythm. They were going to give him about 7 days for his hearts rhythm to correct itself, or they said he might have to go home with the pacemaker attached. Again everything was going well and the devil is still trying to take away our happiness with worry.
Day after day the doctors would come by and turn off the pacemaker and it still wasn’t beating the way they wanted it to beat. The good news was that they weren’t worried about it, so that helped us out as well. Slowly they reduced the amount of machines giving medications to John . It was a sight to see the rack full of machines for his medications and IV’s to the point where they put some around his bed because there was no room on the rack. Now the rack was starting to have some empty spots. We felt so happy when they would come by and say they would be removing more. We were able to start holding John again. It felt so good to have him in our arms again. It felt so good to know that we would be getting him out of there and home where he belonged. The next step was for him to start trying to feed so that we could get out of the CTICU and into the NICU upstairs. The doctor came by and told the nurse to prepare a bottle and see how John will do. They said that he had to drink about 30ml (1 ounce) in about 10 minutes, and whatever else he couldn’t drink to just garbag it, which meant the feeding tube through his nose. We were told that when it came time for John to be released, if he wasn’t feeding from the bottle that he would be sent home with a feeding tube. We wanted John to go home with nothing attached. So as he tried taking his first bottle, he had a hard time. Now remember this was the first time he was actually going to have food since he was born! The 10 minutes went so fast and we kept trying to stall the nurse. She gave us extra time, but at the end of it, he just wasn’t ready yet. So the nurse placed the feeding tube and fed him. We heard the feeding tube could also cause an irritation so we really prayed that John would start feeding on his own soon.
We tried quite a few times during the day to feed him and still he would not take enough. We wondered if the nurse at night would be patient in feeding him or just try and then feed him through the feeding tube. That night we had a nurse we had before and one that really took good care of him as well. We left very comforted. Again God just put the right people in the right place at the right time. When we came back the next morning, John was in a little onesie, and looked so good. That nurse really did such a great job. She mentioned to us that he took more ml’s but still not enough, as everyday they increased the amount he was suppose to drink. When the doctors came by for their rounds, they were happy to hear that he was at least drinking some milk. When we came back from lunch we were very happily surprised to hear that they were able to unplug the external pacemaker. His heart’s rhythm was exactly the way it was supposed to be. They did leave the wires attached even though the pacemaker was off just in case we would need it again. But the way God was taking care of everything, we knew John wouldn’t need the pacemaker again. John was doing so well that they told us as soon as a bed became available in the NICU they would be moving him. The good news was that this was another step closer to getting him home. The bad news was that there would not be one nurse just watching John, but 1 nurse that would be taking care of 4 babies. They said the goal of the NICU was to prepare Ida and I on how to care of John when he gets home. John slowly began drinking enough milk. They removed the feeding tube, which was another great relief. Now the only things left was John’s stitches, the tube in his nose for air and the pacemaker wires.
John was doing so well, and being able to hold him without all those wires was amazing. They lowered the amount of oxygen being supplied through his nose to the bare minimum. They told us he would soon be off that too. As the doctors made their rounds they told us his chest was healing fine and that tomorrow they will remove the stitches and the pacemaker wires. Oh yea they also told us that HE CAN GO HOME TOMORROW!!!!!!!!!!!!!!!!!!!! Praise God! For two people that have gone through what we have, and have not been home for over 15 days, you can only imagine how excited we were. Just letting our family know that he will be coming home was exciting nonetheless the excitement they felt.
John was a warrior. He looked as though nothing had happened at all. They turned off the oxygen to see how John was going to handle it, and there was no problems. John was able to breathe on his own. Again praise God as we did not have to worry about going home with an oxygen tank for John. John had an IV left in his wrist for his last medication, and of course one day before he was to be done the vein bursted and they said they would have to find another vein to put it in. We really didn’t want him to go through another nurse trying to find a vein on him again, and thank God they said he wouldn’t need it. We were so relieved. So the only thing left was the stitches and the pacemaker wires. That night Ida stayed with John as they allowed one parent to stay. She made sure he ate well and that there would be no surprises tomorrow when we can FINALLY TAKE HIM HOME! I came back in the morning to see John in Ida’s arms. She was so happy, and just knowing that its finally time to go home that day, so much pressure was lifted. They told us that John would be on 3 medications when we left, but none specifically for his heart. 2 of the 3 would be temporary. The 3rd one will also be temporary but would last for a few months. They taught us how to prepare the dosages and give them to John. The doctor came by and pulled the stitches out and the pacemaker wires. John was finally FREE! We dressed him in his going home outfit, and finally placed him in the car seat. Getting him in the car and leaving the hospital for the last time was so relieving. Our baby John was going home. Getting home after 16 days felt so good. He actually came home the same day as his ME-BA’s (Medz Baba Grandpa George) birthday. The day was complete as we heard ME-BA say this was the best birthday present he has ever gotten. Thank you God for blessing us through this suffering. The word Faith has a whole new meaning in our lives.
GOD’S MIRACLE WITH BABY EVAN
The whole time we were at CHLA, there was a baby named Evan next to John, who also had heart surgery. Through our many days at the hospital, with Evan as our neighbor, we got to know him and his family. Evan was not recovering the way the doctors wanted. He was still having some complications after his first surgery. We spent so much time together that we became close to their family, and it felt as though God put our families there together for a purpose. The doctors decided to scan Evan again to find out why he wasn’t recovering the way they wanted him to. They found out that he would need to have another open heart surgery, and one of the issues they found was that a valve was leaking. The family said the doctors might need to replace the valve with a synthetic valve to fix the leak. This, in turn, would mean that Evan would have to come back periodically to replace the synthetic valve as he grows. Ida and I were speaking with Evan’s Grandfather, and I just felt that God was telling me that we have to pray specifically for his valve. We prayed that God would fix that valve without the use of a synthetic valve to keep him from coming back to have more surgeries.
The next day, Evan had his surgery. Ida and I were wondering how things went. Ida left the room with Baby John and I to make a phone call. As she went to the parent lounge at the hospital she saw Evan’s family. They all looked happy and had smiles on their faces. When Ida asked how things went, they said the surgery went well. The best part was that when they went to fix the valve, the doctors saw some extra tissue in the heart which they were able to use to repair the valve. Amazing. They said the doctors never even gave them an option that this was possible. As Ida came back to the room and told me what happened I couldn’t believe it. I got up to go to the room and rejoice with them. When I got there I saw how relieved and excited they were. As I started talking to them, Evan’s grandfather (who wasn’t there at the time Ida saw them all together) stopped everyone and told them that he had seen me in the hall earlier that day, before Evan went into surgery. He stated that I had told him that Ida and I prayed specifically for Evan’s valve, that God would take care of the valve so that the synthetic valve would not need to be used on Evan. They were all in amazement, and the only thing I could say was “all Glory be to GOD”! I am not trying to say I am a miracle worker. All I know is that God is Amazing, and he still performs miracles. We need the faith without any doubt that he WILL do it. Our faith has taken on a whole new meaning. Praise God for all he did and is doing in Evan’s life.
We ask that when you pray for John, please pray that God would continue to strengthen Evan’s heart and make it perfect.
The whole time we were at CHLA, there was a baby named Evan next to John, who also had heart surgery. Through our many days at the hospital, with Evan as our neighbor, we got to know him and his family. Evan was not recovering the way the doctors wanted. He was still having some complications after his first surgery. We spent so much time together that we became close to their family, and it felt as though God put our families there together for a purpose. The doctors decided to scan Evan again to find out why he wasn’t recovering the way they wanted him to. They found out that he would need to have another open heart surgery, and one of the issues they found was that a valve was leaking. The family said the doctors might need to replace the valve with a synthetic valve to fix the leak. This, in turn, would mean that Evan would have to come back periodically to replace the synthetic valve as he grows. Ida and I were speaking with Evan’s Grandfather, and I just felt that God was telling me that we have to pray specifically for his valve. We prayed that God would fix that valve without the use of a synthetic valve to keep him from coming back to have more surgeries.
The next day, Evan had his surgery. Ida and I were wondering how things went. Ida left the room with Baby John and I to make a phone call. As she went to the parent lounge at the hospital she saw Evan’s family. They all looked happy and had smiles on their faces. When Ida asked how things went, they said the surgery went well. The best part was that when they went to fix the valve, the doctors saw some extra tissue in the heart which they were able to use to repair the valve. Amazing. They said the doctors never even gave them an option that this was possible. As Ida came back to the room and told me what happened I couldn’t believe it. I got up to go to the room and rejoice with them. When I got there I saw how relieved and excited they were. As I started talking to them, Evan’s grandfather (who wasn’t there at the time Ida saw them all together) stopped everyone and told them that he had seen me in the hall earlier that day, before Evan went into surgery. He stated that I had told him that Ida and I prayed specifically for Evan’s valve, that God would take care of the valve so that the synthetic valve would not need to be used on Evan. They were all in amazement, and the only thing I could say was “all Glory be to GOD”! I am not trying to say I am a miracle worker. All I know is that God is Amazing, and he still performs miracles. We need the faith without any doubt that he WILL do it. Our faith has taken on a whole new meaning. Praise God for all he did and is doing in Evan’s life.
We ask that when you pray for John, please pray that God would continue to strengthen Evan’s heart and make it perfect.
