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