Dear Family and Friends,
We cannot say thank you enough for all of your support and prayers. Every day God has been gracious to us, giving us strength and peace. God has met our needs in ways we could have never imagined.
To update everyone, we were back down to CHOP on Jan. 5th where we received the good news that Isaiah’s hole in his heart (the ventricle septal defect) had closed up by itself. We met with the pediatric cardiologist, Dr. Mercer, and she felt Isaiah now has a normal echocardiogram. We praise the Lord for this small miracle. Isaiah will not need heart surgery and probably not have breathing issues after birth. Also, his liver has not gotten worse and his abnormal right kidney does not show signs of hydronephrosis (distention of the kidney with urine due to a blockage).
However, there was bad news this trip. The fluid on his brain has increased and they are still not sure why this is happening. The doctors have not been able to see a blockage, sign of infection, hemorrhage, or a physical defect to cause this. They will continue to measure the progress of the brain and head size. As of right now, Isaiah’s head circumference is in the 50% and his body growth in the 24%. He weighs approximately between 3 ½ lbs and 5 lbs. On Jan. 19th we had another ultrasound that confirmed that the fluid in Isaiah’s brain has increased; the right side has more than the left. We will not know to what extent Isaiah has been affected until he is born.
There’s still a narrowing between the stomach and duodenum. On Jan. 29th we head back to CHOP to meet with Dr. Holly Hedrick, neonatal surgeon. We will be discussing with her the need for some type of feeding tube or minor surgery to allow Isaiah to obtain the necessary nutrition. This is the only type of major treatment we will probably be pursuing if Isaiah truly has Trisomy 18. We will primarily do supportive and comfort care. The doctors finally decided we do have to deliver at CHOP, because after Isaiah’s birth he will have to be immediately evaluated.
There has been question as to what exactly Isaiah has. We will hopefully know after tests performed the first week of Feb. down at CHOP. The doctors still feel he has Trisomy 18 due to all of his anomalies (which still means he will not live long), but that is not definitive yet. No matter what he has we are still praying and hoping God allows us to bring him home for at least 2 months.
As Isaiah’s birth approaches, I am becoming more and more anxious. I’ll be honest; I am absolutely terrified of what the future holds for our little boy. I know that God is in control and He does not give us more than we can handle, but I often feel overwhelmed. God keeps bringing to mind the verses, “Fear thou not, for I am with thee. Be not dismayed for I am thy God. I will strengthen thee, yea I will help thee, yea I will uphold thee with the right hand of My righteousness” (Isaiah 41:10), and Joshua 1:9, “Be strong and of a good courage; be not afraid, neither be thou dismayed: for the Lord thy God is with thee wherever thou goest.” It’s sometimes hard to believe these words of God, but I have actively seen God work in my life and answer numerous prayer requests in the past, that I must have faith and trust Him once again. Chris is always telling me not to worry about what we cannot control, but I’m a mommy and it’s in my genes to worry. Pray for extra strength for me as we are closer every day to Isaiah’s birth.
Continue to pray for us. Our main requests are: 1) that Isaiah can come home for at least 2 months; 2) that Isaiah will be delivered naturally (he is no longer breech, praise the Lord); 3) that God will continue to provide for our needs; 4) that we won’t fall apart under all the stress, but will feel continually strengthened by God’s hand.
Thank you again for all you have done to help us out and for praying for us. We now have a blog set up. We will use the blog to update everyone, instead of emails. Eventually, we will also include pictures as we are able to. Please continue to write us. We are often blessed by your letters and emails.
In His everlasting arms,
Chris, Joy (Emr), Josiah, and Isaiah Miller