Yesterday's Appointment

Hi Friends and Family,

Week after week we have been watching our baby get progressively worse. Yesterday was no exception. The hydrops behind her head grew to 7.5 cm this week. The swelling on her skin has gotten worse, as well as the fluid surrounding her vital organs. She is running out of space for movement due to all the fluid. When they checked her heartbeat, it was 135. I was afraid that was a red flag, since in the past it has always been 150. After talking to my doctor today, I found out that 135 is actually normal for her age. Typically as babies get bigger their heart rate slows some. She truly amazes me how strong she is. She has tried so hard to fight this out. When I talked to my doctor today she said that both her and my high risk doctor thought "this would be over a long time ago"; and that this was a lesson and reminder to them both that "ultimately they are not in control". She told me she typically does not see a case like mine last this long. I am so proud of our little fighter.

However, it is so painful as a Mom to see your child struggle more and more week after week. Just when our doctors feel it can't get worse, it does. I want peace for our baby. I told her yesterday that it was okay to let go. I know she can't understand me, but it gave me comfort. As each week has gone by, I feel as if God is gently telling us, "No, not this time." Ryleigh was a miracle baby, but he may have different plans for our family this time. Having said that, I would still love to see a miracle. There will continue to be a tiny bit of hope until our sweet girl's heart stops beating.

In the short amount of time since the diagnosis; I have met so many people that have lost a child. It has been so unique in the ways I have come in contact with these people. The doctor at Care Now, a Police Officer, a Lady in the elevator at Preschool,etc... I feel God's presence in those moments.

Again, we wanted to thank you all for praying for our sweet baby. Regardless of what happens now, I know our daughter has touched many of your lives. I am so grateful for that. I love getting verses from you that you have been lead to send our way. Yesterday we received this one. (Thank you Bethany)

"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 Savior;...Since you are precious and honored in my sight, and because I love you, I will give me in exchange for you, and people in exchange for your life. Do not be afraid, for I am with you." -Isaiah 43:1b-5a

I needed that reminder! We love you all and will keep you posted again next week. Blessings to each of you, Kam