I suppose I used the word interesting on purpose. As if in fear I didn’t want to believe that there could be bad news today. Truthfully, there isn’t bad news just more of the same as Noah is neurologically in the same state. The docs confirmed what we feared; that my son is making minimal progress. It is hard to take especially the problems with his suck/gag reflex. He remains hypertonic and is really having trouble breathing when he is on his back.
The good news is he may be moved from the level III NICU this week to level II. I don’t really know what this means but there will be new nurses and doctors to look after him. They will be planning and treating him for long-term care.
I have hit my finger with a hammer. Never done it twice in a row. That’s what today feels like. I cling to my favorite verse: 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.” I really could use the hope part today.
Pray for Julie. She will be at home with Alyssa tonight and I will remain at the hospital. I love you guys and I can feel the power your prayers. – Ethan
Ethan,
Sorry to hear all the bad news. I will keep all 4 of you in my prayers. Keep strong and hold the faith. Love you man.
Andy Boston
Despite all of the unknowns, know that you have a son, and he’s amazing. He’s so pure and innocent. There is nothing better than seeing you and Julie hold him and love on him. And God is right there, holding Noah, holding you, holding Julie. We love you guys.
Blair
Stay strong in your faith. Your faith will give you hope. We are very strong in our hope for Noah. Keep loving on him. Give Noah hope. Your touch is so important to him. We will continue to pray for your sweet, sweet Noah, as well as for you, Julie and Alyssa. R.B.
Romans 15:13:
May the God of hope fill you with all joy and peace in believing, so that by the power of the Holy Spirit you may abound in hope.
All I can think of is that without our LORD we are lost and without hope. BUT WE HAVE HIM and HE HAS US so close to Himself that there is nothing separating us. In Him we have our very being. Every breath Noah takes, God is in it. God, bless Noah, please bless Noah.
I love you,
C.
I held him today. I held his sweet, little, beautiful, still body. He really is quite perfect to look at. Nothing tells you that he isn’t just any other sleeping 1 week old. And as I sat holding this little bit of heaven on earth, I thought of the Bible verse “Be still and know that I am God.” And I thought, sweet Noah – you are doing exactly that. Noah is near to God, who knows the heart of His children.
Romans 8:26-28. Verse 26 tells us that when we do not how to pray that the Spirit intercedes for us with groanings too deep for words. We will continue to pray, even though earthly words escape us. We can be still in His presence and let the Spirit intercede for us.
We love you all.
Aunt April
julie and ethan, i heard of your family’s struggle from my bible class at memorial road in edmond. i want you to know that hearing your story has changed my life. i’ve been “going through the motions” in my own relationship with God and have been searching for meaning and purpose in my relationship with Him. when i read the things you write and the responses, it moves me to tears. not just because a child’s life is in the balance, but because your faith and the faith of your friends and family is amazing and it makes me want to be a better christian. it makes me have to open my bible and read…especially when someone gives a scripture verse, but doesn’t quote it. you make me want to be a better mother to my own 3 children and not ever take a moment of their precious lives for granted. i wish i knew you. i wish i could hug each of you and tell you i love you. you all have a special place in my heart now and i will lift you up to our God in prayer. thank you, noah, for showing me the love of the Father through your precious little life. sabrena goley and family