I just got off the phone with Dr. E, the chief cardiologist at the Florida hospital. The conversation did not go as I expected and that once again reminded me that the Trisomy 18 world is and will remain a roller coaster in every aspect. And that I should not get cocky and expect things to go according to my plans. God is in complete control and I am nothing and know nothing compared to Him.
Dr. E said that Lilly has been the center of many discussions lately. And that he had a long discussion with Dr. R, her local cardiologist this morning.
It seems that Lilly has a new problem with her heart. (I'll explain it from what I remember and understand. I was trying to take notes but there was a lot going on around me and I was trying not to feel panicky and honestly I don't understand a lot about the heart.) Dr. R has been talking about how Lilly's heart has thickened. Well apparently both the right and left ventricles have also thickened. And it is very strange that the left ventricle has done so. VERY VERY ODD. They have no idea why. It is not in response to the pulmonary artery band. This means that if they operated, her heart would be stiff and not relaxed. Therefore it won't fill or empty properly.
Because of this unexplained thickening of the left ventricle, they do not want to do the VSD repair surgery right now. They are very very concerned that she would not survive because her heart will not function well off bypass and they don't know how to protect it. Even if they did go ahead and do the VSD repair, that still would not help this thickened ventricle problem.
So - what next? Keep being monitored locally by Dr. R. Praise God Lilly's overall heart function is very good right now. And the band still fits well. (OK - now there's a blessing to her painfully slow growth.) Dr. E told me a number of times that they do not intend to leave Lilly hanging. If the ventricle shrinks back close to normal, then they are very open to operating on her. Though I didn't like what Dr. E was telling me, he was so kind and reassuring I didn't feel he was blowing us off. And, just as I was when we met him in Florida, I was again struck by how much he seems to care about Lilly as a worthwhile baby - not as a throwaway Trisomy 18 person.
My poor little Lilly with the bad heart. Seems ironic that today she is wearing her little dress with the red hearts on it that cousin S. made for her. She's in my lap right now making new sounds and smiling at me.
Please please pray that Lilly's left ventricle will shrink back to normal and that she would be able to have the open heart surgery.
"But Jesus looked at them and said to them, 'With men this is impossible, but with God all things are possible.'" - Matthew 19:26
I know God is in charge, but my heart is breaking along with yours and Frank's right now. I am so blown away for Lilly. I keep looking at her chubby face, arms, leg, etc and thinking how normal she looks.
ReplyDeleteI think I will try and come next week to be with her and help you with the house if you would like.
I love you all
Shisshy
praying for all you requested. we will pound the heavens with petitions for dear lilly and beg the Great Physician's mercy.
ReplyDeletelove,
mom
Absolutely stunned. Am always seeing how hard we try to direct our own steps, but we are not in control. Jer. 10:12 "It is He who made the earth by His power,Who established the world by His wisdom; And by His understanding He has stretched out the heavens.When He utters His voice, there is a tumult of waters in the heavens, And He causes the clouds to ascend from the end of the earth; He makes lightning for the rain,And brings out the wind from His storehouses." It is He who cares and watches over Lilly. We shall pray, pray, pray.
ReplyDeleteSorry for the disappointing news, but will keep praying for Lilly.
ReplyDeleteOh No, Lilly! Today is saint Patrick's day and you didn't wear Green!
ReplyDeleteLove,
Tabby
We will continue to petition the Great Creator on Lilly's behalf. One thing we know, He loves her more than any of us could ever dream too. Get in the Word and keep building your faith...it is the only thing that has kept us thinking right. Don't let that crazy doubt thing get a hold of you as it so easily creeps in...I know. Bring into captivity every thought and imagination that exalts itself against the knowledge of Christ. We will pray that no one ever needs to touch Lilly's heart, but the Almighty.
ReplyDeletePraying for Lilly and your entire family.
ReplyDeleteWe are always praying for Lilly and will continue to do so!
ReplyDeleteIf i could split my heart in two i would give half of mine right away.
ReplyDeleteI keep praying for her recovery. As you write: With God all things are possible. Love to you all and a little kiss to Lilly :-)
Our family will be praying for your little girl's heart and for your mama's heart. Your family is a blessing and a powerful example to ours. Thank you for so honestly speaking and allowing us into your trials and triumphs.
ReplyDeleteThe W-H's
I love you,Lilly in RED. I'll pray for you and your Mom and Dad and your sister and brother...You are so blessed and loved!
ReplyDeleteYa Ya Westelle
So sorry to hear about the setback. I know this is hard, especially when we have things planned out (I'm a planner, too). Times like these draw us to the Savior, who reminds us to not worry and not be anxious, "for tomorrow will be anxious for itself. Sufficient for the day is its own trouble." The Lord works all things out for the good of His children and for His glory. We don't know the whys and hows, but the Sovereign Lord does. May Psalm 27:14 encourage you: “Wait for the LORD; be strong, and let your heart take courage; wait for the LORD!”
ReplyDeleteLove, Kim
Read tonights post with great disappointment. Remember, as hard as it is, you must take it one day at a time. In order to move 3 steps forward, as painful as it is, we sometimes must take one step backward. Be assured that Melba and I are praying for Lily and more importantly, for your family to keep strong!
ReplyDeleteFolks, I want to encourage all of you to confidently ask our Heavenly Father for a good gift for Lilly. He told us to ask of Him so let us be diligent on Lilly's behalf. We are evil and give good gifts to our children, how much more will He do for us? This problem is NOTHING for Him. Let us ask as the neighbor seeking bread without ceasing until she gets it. But let's remember to ask in faith, believing, and not doubting. This is something that has been growing in my wife and me for the last 2 years. This is not a time for us to be like waves tossed in the ocean or to be double minded. Today, I choose faith and trust for there is no other way. Join me as I am literally on my knees in the U of M PICU praying for Lilly. Encourage yourselves in His Word, and pray fervently.
ReplyDeleteYour brother in Christ and friend from afar, Brad.
I am very sad to hear this news. It never hurts to get a second opinion. It is well known that many doctors do not think it is in the best interest of the child or family to prolong life of trisomy babies. This is known and established in the medical literature. (Recent articles- Mercurio and Perlman) Some hospitals even have policies about it. When my baby died, we found a DNR order had been placed in the records without our knowledge or consent and all the narcotic records are missing from the PICU.
ReplyDeleteFor such an important situation, it cannot hurt and would give you peace of mind to consult with a cardiologist who is well-known to be trisomy-friendly. SOFT or many trisomy families can connect you. God Bless.