Dear Family and Friends,
Words cannot express how thankful we are to everyone for your prayers, words and letters of encouragement, emails, meals, and help with watching Josiah during doctor’s appointments. This has been a difficult time for us, but we can definitely feel the power of your prayers as we deal with Isaiah’s disabilities and wait for his outcome. We still have good days and bad days, but God’s grace has been very evident.
We had some good news today. We had another follow-up ultrasound (U/S) at Doylestown Hospital. This U/S we have to have every month (besides the CHOP visits) to keep a close eye on Isaiah and his development. I had the great opportunity to take my wonderful grandmother, Georgina Solt, to the U/S. My grandparents have been incredible prayer warriors in our lives. They have been constant examples of what true Christianity is all about and what active faith in Christ entails. It was encouraging to me to have my grandma read Scripture passages in the car on the way down to Doylestown.
Anyway, back to the visit. I was anxious to know if Isaiah’s condition had worsened any or if he had stayed the same. Our good news is that Isaiah has not worsened at this time. His ventricles of the brain have not enlarged any further with fluid, and his head circumference has remained within normal limits. His heart was beating away at 136 beats per minute. The U/S tech could not tell if Isaiah’s heart defect had closed or remained unchanged---that will be determined at our CHOP visit in January. The stomach is still slightly enlarged, but is slowly moving fluid through his digestive track. One way to tell if his dietary and kidney system were worsening would be I would have an increase in amniotic fluid. Thankfully, my fluid levels are right within normal range. Isaiah was moving the entire visit. He did not like being probed. It was rather entertaining to watch him on screen. So, even though he is not completely healed, he is stable and continuing to grow. Isaiah is in the 50th percentile for growth and development, and weighs approximately 2lbs. 4oz. This news was all very encouraging for us and we rejoice in the little blessings God gives us every day.
We have busy months ahead of us. I have to visit my personal OB/GYN every 2-3 weeks to monitor my health. On Friday, I see my cardiologist because my heart keeps racing and have periods of chest heaviness which makes me really uncomfortable. The doctors seem to believe it is all pregnancy/hormone related, but they want to keep me monitored. When I was pregnant with Josiah, I had similar symptoms, but this time around I feel worse.
Then at 32 weeks we head back down to CHOP for another intense U/S and echocardiogram. When I am about 37 weeks, we are planning to have an amniocentesis to determine for sure if Isaiah definitely has Trisomy 18. If he does, we will probably deliver at Grand View Hospital because Isaiah will only need comfort/supportive care at that time. If what he has is NOT Trisomy 18, than we will have to deliver at CHOP. The reason we are having the amniocentesis when I am full term is that if I do go into labor because of the amnio, Isaiah has a fighting chance to come home with us for a short time. The outcome of the amnio allows us to prepare for his birth and treatment. If I do not have the amniocentesis done, I would have to deliver at CHOP and the staff would take Isaiah from me at birth to do all the testing. We feel very strongly that if we only have a few hours with him, we want to spend his precious time together loving him and making as many memories as possible in a short period of time. Our hope is still that God allows us to bring Isaiah home for 2 months. This is our biggest prayer request.
One of the biggest lessons I have been learning through all of this is HOPE! God is taking us through this trial for a reason, and we may not know for sure what that reason is here on earth, but one thing I do know that every day God gives us something to attach our hope to. I have never been so thankful for kicks in the stomach or feet wedged underneath my ribs. When I get discouraged, or feel like I cannot go on, my little tiny son gives me a quick kick letting me know he is still with us and fighting to survive. A lot of times, Isaiah has been my encouragement, and he isn’t even born yet! Many times God brings a hymn to mind, “My hope is in the Lord, Who gave Himself for me.” This reminds me that Christ gave the ultimate sacrifice of His life for us, and we owe Him everything, even our son Isaiah. Also, when we are discouraged, someone led by God sends us a Bible verse that uplifts our spirits. We are reminded time and time again that, “When we are weak, HE makes us strong,” (II Corinthians 12:9-10). Thankfully, God does not require us to be strong, He only requires/wants us to lean on Him. “He gives strength to the weary and increases the power of the weak” (Isaiah 40:29).
Many years ago, I chose John 3:30 as my life verse, “He [God] must increase, and I must decrease.” Chris had chosen Jeremiah 29:11, “For I know the plans I have for you, declares the Lord, plans to prosper you and not to harm you, plans to give you HOPE and a future.” Little did we know that we would be called upon to put these verses into action. But, God knew. A long time ago God started preparing us for this difficult time. Please continue to pray for us and sending us encouraging notes. We really appreciate it. Also, we don’t mind if you forward our emails onto your friends and families. The more people storming the gates of heaven for us and for Isaiah, the more we feel God’s power and presence.
Again, thank you to everyone for your prayers and support. We appreciate all the emails, letters, and phone calls. We will try to update everyone on a monthly basis. Eventually, there will be a blog for you to access to keep up with everything. When my mom comes up, we are going to start a memory book for Isaiah that will include all your letters and emails. This will help us to never forget God’s promise that we are not alone; “Where two or three are gathered together in my name, there I am with them” (Matthew 18:20).
May God bless you all richly!
In His Arms,
Chris, Joy (Emr), Josiah, and Isaiah Miller
Tuesday, December 2, 2008
Thursday, November 6, 2008
Update on our precious unborn SON...
Dear Friends and Family,
It's with a heavy heart that we write this letter. Yesterday we had an incredibly long and intense day at CHOP to figure out what was exactly wrong with our tiny, little, beautiful, unborn SON. Yes, we found out we are having a boy. We were very hopeful as we drove down to CHOP hoping for the best outcome. Unfortunately, God had other plans for us.
Our day started at 7:30am and ended at 4:30pm. We first had a 3 hour ultrasound, then an echocardiogram of the baby's heart, then an MRI of his entire body, and finally we met with the high-risk perinatologist specialist Dr. Bebbington and geneticist specialist Stephanie. Dr. Bebbington took us step-by-step through our baby's body. The news was devestating because our son has something critically wrong with almost every major organ/body system. It was hard to comprehend, especially since he is in constant movement inside of me, and on the scans he was always pushing against the probes. We will try to break it down for you as simply as possible, but we are asking that if there is something or some word you do not understand to please look it up online. Things are just too overwhelming right now to answer alot of questions. We are asking that you please be patient with us. We have alot to digest in the next few days and months.
Dr. Bebbington started with the brain. There is fluid on the brain possibly from a previous bleed or blockage, but they cannot tell exactly. The stomach is enlarged and not draining properly due to a blockage or narrowing/stenosis between the stomach and duodenum. The liver's duct system is backing up because there is no gallbladder and the body's toxins are not being filtered out. They call this biliary atresia which is life threatening. Now the heart---there is a hole in the heart between the ventricals so the blood is not flowing in the right direction throughout the baby's body. This is called ventricular septal defect. The right kidney is small and in the pelvis rather than in the right lower back. It is quite possible that it is not functioning. The most mild of the abnormalities is the left arm that is missing the radius and thumb and is bent at a 90 degree angle. Dr. Bebbington believes our little boy has what is called Trisomy 18, a chromosomal disorder (which will be confirmed at his birth). In the doctor's words, "Trisomy 18 is not compatible with life." This means our son may not make it to full term, and if he does he will not live longer than a couple of months. This is very hard for us, especially since he seems so alive in me. The doctor said the baby is doing ok right now because my body and the placenta are doing the work. But, once he is born his body would have to take over, and his little body can't do it. There is no cure. There is no surgery. There is only hope in our God. He is the Great Physician.
We know this is alot to take in. We are completely overwhelmed at this time, but we continue to take one step at time and are depending on God for strength and wisdom to see us through the future. The first Bible verses given to us were found in Isaiah 43:1-4a, "But now, this is what the Lord says--He who created you, O Jacob, He who formed you, O Israel, 'Fear not, for I have redeemed you; I have summoned you by name, you are mine. When you pass through the waters, I will be with you; and when you pass through the rivers, they will not sweep over you; when you walk through the fire, you will not be burned; the flames will not set you ablaze. For I am the Lord, your God, the Holy One of Israel, your Saviour. You are precious and honored in my sight, and I love you.' " We know we have been chosen specially to walk this road, to pass through these waters. Our prayer is that through this trial, God's name will be honored and glorified. He does not make mistakes. Even though our son may not seem put together correctly, God made him perfectly for us, and we will love him no matter what. We will treasure the time we do get to have with him.
We decided to name our son Isaiah (influenced by the verses above) which means "the Lord saved." His little mismatched body is already saved by our wonderful Saviour, and when God decides to take Isaiah home we understand that he will be saved from his little broken body, never to suffer. He will be made whole in heaven and Chris and I will see him again someday as promised to those who trust in God with their whole heart, mind, soul, and body (as King David did in II Samuel 12:21-23, Romans 10:9-13).
Continue to pray for all 4 of us, specifically for peace in the midst of this storm. Thank you already to those who have sent encouraging emails, letters, phone calls, and brought meals. We really appreciate it.
In Christ's everlasting arms, Chris, Joy, Josiah, and Isaiah Miller
P.S. The best way to reach us is through email. If we do not respond back immediately, please do not take offense. We are still just trying to digest everything. We will update periodically as the pregnancy progresses.
Here is video of a family who went through what we are now facing with Isaiah having Trisomy 18. We hope to touch people live's through this experiece as they touched ours.
http://www.youtube.com/watch?v=th6Njr-qkq0
It's with a heavy heart that we write this letter. Yesterday we had an incredibly long and intense day at CHOP to figure out what was exactly wrong with our tiny, little, beautiful, unborn SON. Yes, we found out we are having a boy. We were very hopeful as we drove down to CHOP hoping for the best outcome. Unfortunately, God had other plans for us.
Our day started at 7:30am and ended at 4:30pm. We first had a 3 hour ultrasound, then an echocardiogram of the baby's heart, then an MRI of his entire body, and finally we met with the high-risk perinatologist specialist Dr. Bebbington and geneticist specialist Stephanie. Dr. Bebbington took us step-by-step through our baby's body. The news was devestating because our son has something critically wrong with almost every major organ/body system. It was hard to comprehend, especially since he is in constant movement inside of me, and on the scans he was always pushing against the probes. We will try to break it down for you as simply as possible, but we are asking that if there is something or some word you do not understand to please look it up online. Things are just too overwhelming right now to answer alot of questions. We are asking that you please be patient with us. We have alot to digest in the next few days and months.
Dr. Bebbington started with the brain. There is fluid on the brain possibly from a previous bleed or blockage, but they cannot tell exactly. The stomach is enlarged and not draining properly due to a blockage or narrowing/stenosis between the stomach and duodenum. The liver's duct system is backing up because there is no gallbladder and the body's toxins are not being filtered out. They call this biliary atresia which is life threatening. Now the heart---there is a hole in the heart between the ventricals so the blood is not flowing in the right direction throughout the baby's body. This is called ventricular septal defect. The right kidney is small and in the pelvis rather than in the right lower back. It is quite possible that it is not functioning. The most mild of the abnormalities is the left arm that is missing the radius and thumb and is bent at a 90 degree angle. Dr. Bebbington believes our little boy has what is called Trisomy 18, a chromosomal disorder (which will be confirmed at his birth). In the doctor's words, "Trisomy 18 is not compatible with life." This means our son may not make it to full term, and if he does he will not live longer than a couple of months. This is very hard for us, especially since he seems so alive in me. The doctor said the baby is doing ok right now because my body and the placenta are doing the work. But, once he is born his body would have to take over, and his little body can't do it. There is no cure. There is no surgery. There is only hope in our God. He is the Great Physician.
We know this is alot to take in. We are completely overwhelmed at this time, but we continue to take one step at time and are depending on God for strength and wisdom to see us through the future. The first Bible verses given to us were found in Isaiah 43:1-4a, "But now, this is what the Lord says--He who created you, O Jacob, He who formed you, O Israel, 'Fear not, for I have redeemed you; I have summoned you by name, you are mine. When you pass through the waters, I will be with you; and when you pass through the rivers, they will not sweep over you; when you walk through the fire, you will not be burned; the flames will not set you ablaze. For I am the Lord, your God, the Holy One of Israel, your Saviour. You are precious and honored in my sight, and I love you.' " We know we have been chosen specially to walk this road, to pass through these waters. Our prayer is that through this trial, God's name will be honored and glorified. He does not make mistakes. Even though our son may not seem put together correctly, God made him perfectly for us, and we will love him no matter what. We will treasure the time we do get to have with him.
We decided to name our son Isaiah (influenced by the verses above) which means "the Lord saved." His little mismatched body is already saved by our wonderful Saviour, and when God decides to take Isaiah home we understand that he will be saved from his little broken body, never to suffer. He will be made whole in heaven and Chris and I will see him again someday as promised to those who trust in God with their whole heart, mind, soul, and body (as King David did in II Samuel 12:21-23, Romans 10:9-13).
Continue to pray for all 4 of us, specifically for peace in the midst of this storm. Thank you already to those who have sent encouraging emails, letters, phone calls, and brought meals. We really appreciate it.
In Christ's everlasting arms, Chris, Joy, Josiah, and Isaiah Miller
P.S. The best way to reach us is through email. If we do not respond back immediately, please do not take offense. We are still just trying to digest everything. We will update periodically as the pregnancy progresses.
Here is video of a family who went through what we are now facing with Isaiah having Trisomy 18. We hope to touch people live's through this experiece as they touched ours.
http://www.youtube.com/watch?v=th6Njr-qkq0
Friday, October 31, 2008
Update on our precious unborn baby...
Dear Friends and Family,
Some of you have not heard from us for awhile, and some of you we have been in touch with regularly. I know the following news will be a shock, but we felt the need to call on as many people as possible to pray for us and our unborn child.
Today we went for a level 2 ultrasound to hopefully rule out a 2 vessel cord and to look closer at the right arm. Unfortunately, the news we received was much more devestating than we were expecting. It turns out that the right arm is shortened, but it's the left arm that is significantly deformed. It is missing the radial bone and possibly the fingers. The way the left hand is bent into the arm made it difficult to visualize the fingers. The baby does only have 1 artery (instead of 2) and 1 vein in the umbilical cord. However, the most difficult news was that the baby's brain has an over-abundance of fluid in the ventricals, leading to a larger head. We don't know to what extent how the brain is involved.
Our next step is we are heading down to CHOP on Wed, Nov. 5th to have another intense ultrasound, and echocardiogram of the baby's heart and a MRI of the baby's brain. We will talk to neonatal cardiologists, neurologists, and genetisist while we are there. We will probably have to also have an amiocentesis to determine to what extent the deformities go (chromosomal vs. genetics vs. congenital vs. unknown reason).
As you probably can figure out, this has been extremely difficult for us. We do know that God is in control of everything, and has a purpose in giving us this gift of a child. We are heart broken and need support, so we are asking for alot of prayer support and encouragement. We will keep people updated as we know more.
Much love, Joy, Chris, Josiah, and baby-to-be
Bible verses we must cling to:
Psalm 139:13-16For you formed my inward parts; you knitted me together in my motherʼs womb. I praise you, for I am fearfully and wonderfully made. Wonderful are your works; my soul knows it very well. My frame was not hidden from you,when I was being made in secret,intricately woven in the depths of the earth.Your eyes saw my unformed substance;in your book were written, every one of them, the days that were formed for me, when as yet there was none of them.Jeremiah 1:5 Before I formed thee in the belly I knew thee; and before thou camest forth out of the womb I sanctified thee, and I ordained thee a prophet unto the nations.
Some of you have not heard from us for awhile, and some of you we have been in touch with regularly. I know the following news will be a shock, but we felt the need to call on as many people as possible to pray for us and our unborn child.
Today we went for a level 2 ultrasound to hopefully rule out a 2 vessel cord and to look closer at the right arm. Unfortunately, the news we received was much more devestating than we were expecting. It turns out that the right arm is shortened, but it's the left arm that is significantly deformed. It is missing the radial bone and possibly the fingers. The way the left hand is bent into the arm made it difficult to visualize the fingers. The baby does only have 1 artery (instead of 2) and 1 vein in the umbilical cord. However, the most difficult news was that the baby's brain has an over-abundance of fluid in the ventricals, leading to a larger head. We don't know to what extent how the brain is involved.
Our next step is we are heading down to CHOP on Wed, Nov. 5th to have another intense ultrasound, and echocardiogram of the baby's heart and a MRI of the baby's brain. We will talk to neonatal cardiologists, neurologists, and genetisist while we are there. We will probably have to also have an amiocentesis to determine to what extent the deformities go (chromosomal vs. genetics vs. congenital vs. unknown reason).
As you probably can figure out, this has been extremely difficult for us. We do know that God is in control of everything, and has a purpose in giving us this gift of a child. We are heart broken and need support, so we are asking for alot of prayer support and encouragement. We will keep people updated as we know more.
Much love, Joy, Chris, Josiah, and baby-to-be
Bible verses we must cling to:
Psalm 139:13-16For you formed my inward parts; you knitted me together in my motherʼs womb. I praise you, for I am fearfully and wonderfully made. Wonderful are your works; my soul knows it very well. My frame was not hidden from you,when I was being made in secret,intricately woven in the depths of the earth.Your eyes saw my unformed substance;in your book were written, every one of them, the days that were formed for me, when as yet there was none of them.Jeremiah 1:5 Before I formed thee in the belly I knew thee; and before thou camest forth out of the womb I sanctified thee, and I ordained thee a prophet unto the nations.
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