So tired...this is after trying to feed her.
Sleeping beauty...
Lily's neonatologist from level 3 came to see her today when she heard the bad news. She took the time to try and feed Lily herself and saw how bad it was. Yes this is a very special lady, who I will never forget. She made several suggestions at what is actually the problem, maybe not even acid reflux at all. But we will see what happens tomorrow. She was going to talk with Lily's current doctor and hopefully we will get to the bottom of this. I still am bold enough to say that I plan to bring her home this week barring any major complication!
Spiritually I am at a really hard place. Not sure really how to pray, think or act anymore. I know all of the right things to say and do, but honestly it is getting harder and harder to live them out. Maybe I was foolish enough to make my own plans to bring her home this week without really giving it to Him. I guess I just hoped that for once our timing would in fact be His timing. And maybe it still will be. I am going to remain hopeful as hard as it may be right now. I know that God knows the desires of my heart. I know He is going to continue to be with Lily. I know that He won't give me anything that I can't handle with Him at my side. So for now, I am going to continue trying to find ways to "praise Him through the storm." After all it is not about me.
Please pray tonight believing that tomorrow will bring answers and solutions to Lily's problems, that she will be able to eat without being in so much pain, that her BP will continue to get better, and that we will take her home very soon. Please pray that I will not grow weary but will lean solely on my God who has brought us this far. I thank God each night for all of you!
"I wait for the Lord, my soul does wait, and in His word do I hope.
My soul waits for the Lord More than the watchmen for the morning." Psalm 130: 5-6
12 comments:
First psalm 130 is my fave. Secondly, I had to be in the hospital for a few months and girl it will break you down. I can remember thinking I was going to lose it. So you are not alone in that. I am praying for you guys and I am so sorry. I am thankful that we have a God who already sees and knows our hearts and we can pour it all out like water in His presence. He can take our anger and everything else. Also, don't forget your hormones that you have to factor in as well as being tired and feeling divided when your son is at home. I will keep praying!
Jenny, AL
Holley,
I clicked on your blog from L.A.'s page and I just had to leave a comment. First of all, Lily is precious, just beautiful! I have tears in my eyes after reading your post. I'm sorry your family is going through this turmoil. You should know that your faith in God is admirable. What a great example of praising him in the storm. You must be a wondeful mother and wife. God bless you, I have prayed for Lily and will continue to check on her progress.
Beth
Phenix City, AL
You and Greg are truly Amazing! Your faith is so admirable. Our son, Luke, was in the NICU for a week and I nearly lost it, so 4 months... girl I cannot even imagine. We would pray each day/night like you are doing and God would answer our prayers just as he is for Lily. I just wanted to send you a note so that you will know that you are in our prayers each night. We will say an extra special prayer for all of you tonight and that you will have peace for God's timing.
lots of prayers for Lily and also for your family during these trying times. you have many people who know your story and are praying each and every day that Lily gets strong enough to go home. we're all waiting for that day. thank you for finding the time to update your blog with these touching stories and photos every day. you have such a beautiful family.
I admire the strength of your whole family! Lily is beautiful and what a miracle!! I wish you all the best, and that you can have your little girl home with your family - where she belongs - very soon.
I just wanted to let you know that I am praying for you and your beautiful little girl.
Elyssa
Just wanted you to know I'm saying a prayer for your beautiful Lily. God is good and will see you through.
Lisa
I am praying for your family and I hope you get to take that beautiful baby girl home soon. Stay strong!
Prayers being lifted up to Him from Chicagoland. Hang in there!
I'm a friend of Sara's & I'm not sure how many of her work friends are following your story, but I assure you, there's quite a few. I just wanted to say that we're sending prayers and healing thoughts to you & your family! We don't know each other, but that doesn't stop the prayers from finding you. :)
A fellow Mommy from another board showed us your blog...
My name is Tara and I am from Roanoke, VA. I also have a preemie! Jacob Michael was born 9/7/07. He was 3 lbs 1 oz, 13 inches long. Today, he is 33 inches long and a whopping 25 lbs!
Jacob DID NOT have nearly the the battle Miss Lily has had to fight... however, he did have eating problems there at the end! He did not want to eat and he was threatened with a g-tube. He just needed a little time and TLC-- now all he does is eat! I hope Miss Lily just needs some extra time and TLC!
Keep your head up, stay strong, and keep thinking about the wonderful day when you FINALLY get to take your baby girl home!
I want to leave you with a story about preemie moms that I came across while reading blogs/forums in the first few days after Jacob was born-- it got me through the 79 day NICU stay--
How Preemie Moms Are Chosen
(Adapted from Erma Bombeck)
Did you ever wonder how the mothers of premature babies are chosen? Somehow, I visualize God hovering over Earth, selecting his instruments for propagation with great care and deliberation. As he observes, he instructs his angels to take notes in a giant ledger. "Beth Armstrong, son. Patron Saint, Matthew. Marjorie Forrest, daughter. Patron Saint, Celia. Carrie Rutledge, twins. Patron Saint ... give her Gerard. He's used to profanity." Finally, he passes a name to an angel and smiles. "Give her a preemie."
The angel is curious. "Why this one, God? She's so happy."
"Exactly," smiles God. "Could I give a premature baby a mother who knows no laughter? That would be cruel."
"But does she have the patience?" asks the angel.
"I don't want her to have too much patience, or she'll drown in a sea of self-pity and despair. Once the shock and resentment wear off, she'll handle it. I watched her today. She has that sense of self and independence so rare and so necessary in a mother. You see, the child I'm going to give her has a world of its own. She has to make it live in her world, and that's not going to be easy."
"But Lord, I don't think she even believes in you."
God smiles. "No matter, I can fix that. This one is perfect. She has just the right amount of selfishness."
The angel gasps, "Selfishness?! Is that a virtue?"
God nods. "If she can't separate herself from the child occasionally, she will never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't know it yet, but she is to be envied. She will never take for granted a spoken word. She will never consider a step ordinary. When her child says 'mama' for the first time, she will be witness to a miracle and know it. I will permit her to see clearly the things I see ignorance, cruelty, prejudice and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as she is here by my side."
"And what about her Patron Saint?" asks the angel, his pen poised in the air. God smiles.
"A mirror will suffice."
Many prayers coming for Lily and her beautiful, loving family!
Oh, Holley ~ that you are able and willing to take the time to post this says a lot about your faith! you ARE able to carry on because of your Soveriegn Lord! The Great I Am... He is the potter, we are the clay! You are being sanctified throughout this process... There is nothing I can say to comfort you... Another dear friend of mine, in the time of suffering, said the ONLY comfort she found was in her hymn book and God's Word... Just sing, read, ... The Holy Spirit will intervene for you... you don't have to have the words! Holley ~ I commit to get on my knees for you and Lily... you have many friends praying for you across the country!
To HIM be the glory ~
jennifer (and jason)
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