This morning after Olive had her CT scan the neurosurgeon was able to see that her shunt has broken apart. They aren't exactly sure why this happened, except that it is a mechanical problem. It has three pieces...the valve behind her ear, one tube attached to the valve that goes into the ventricle in her brain, and one tube from the valve that goes all the way down to her abdomen. The tube that has detached is the one going into the ventricle in her brain.
Tomorrow (we aren't sure yet what time) she will be put on general anesthesia once again, back on a ventilator, and they will go in and fix the broken parts. This is not a common problem for shunts, but one of the complications that can take place. The neurosurgeon seemed pretty disappointed and told us that this hasn't happened for him in years.
I think the doctors may have been surprised by my apathetic response when they told me the bad news, but these days it is starting to feel like if there is a risk of something going wrong, then most likely it will.
One of the challenges with this will be keeping an IV in her for the next three days to give her antibiotics to prevent infection. Infection is another complication with this surgery, in which case they would have to remove all of the peices and start over once again if that happens.
Surgery for her reflux problem is still being considered, but not confirmed yet if we will need to do it. Being discharged this week is obviously not going to be happening after-all, which feels more comforting than anything based on the circumstances.
We are feeling pretty weary. Wondering if our prayers are going anywhere these days... wondering what Jesus is trying to teach us through this foggy time where the future is so unclear. Despite the circumstances we are still grateful to be here. The nurses have been so sensitive and kind throughout all of these recent roller-coasters. It's been a huge blessing to be under the care of a doctor who shares in our same faith and who cares deeply about Olive.
We still have each other, we still have Olive, a warm comfortable bed to sleep in, food on the table, and so many friends and family and strangers holding us up. We still have much to be grateful for, and I hope I never forget that--even when our questions continue to go unanswered.
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Way to hang in there during this emotional rollercoaster ride. Asking God to bless the hands of the doctor who will fix the shunt. Praying for all of you to be wrapped in God's peace this week. Thinking of you...
Praying for you and for Olive. I am so sorry this is so hard. Life feels so unfair sometimes. I am asking that the Lord would keep you....and sustain you - even in your doubts and numbness and questions. He is able. He is able to keep both you and Rusty and Olive.
Praying from Atlanta,
Candace and Stuart Smartt
Oh God have mercy on your children.
Praying for you all!!! Olive is a strong little girl and she will get thru this. Take it day by day and don't forget to breathe. No need to be in a hurry to get home until she is better so just try to kick back and take a minute to Thank God for what you do have. Olive you are in my prayers baby girl....
God Bless,
Karen WI
Rusty and Lynette you guy's and Olive are always on my mind and I am praying that things will look better for you all soon. I know there are no words to comfort your frustration and fear just know God always has a plan good or bad. Olive is a fighter she has proven that thru and thru.. She is an amazing young lady and she has beat all the odds thus far. Keep up the faith, you've got prayers all over the world for you guy's...
Praying in Seattle,
Joelle
praying for you all tomorrow. can't imagine two shunt surgeries in such a shot amount of time...praying that little Olive holds up for IV's and that you all are sustained too.
Last week I saw an interview with parents of a child who had long-term issues related to his ability to bond with others after living in an orphanage the first couple of years of his life. The interviewer asked if they felt that their journey with him had been difficult but worth it--or if they regretted what they had gone through. The father replied that this wasn't the type of dad he had wanted to be--that he had to be the father his son needed. That vision/dream was very difficult to let go of. "But I guess that must be what being a dad is about..."
Praying that you will be the parents that Olive needs you to be, and that God will provide you with the strength and peace to do this, and the comfort you need in giving up the image you had of what kind of parents you wanted to be.
Our family prays for you all regularly, including my 5-year old son who asks God to help Olive "get better from her brain cold" (his picture of anyone who is "sick").
i ache for you all. i can understand why you are numb from bad news.
as the people lifted the stretcher to take their sick friend to Jesus, i lift olive again to the One who heals and brings peace.
holding you close . . .
I LOVE the post from the other 'Anonymous' about being the type of parent that your child needs you to be rather than the one you hoped/planned to be...that is such a true reality no matter into what situation God has placed you. I can certainly apply that to my child rearing in some ways, while also acknowledging that it is certainly more painful and difficult for some parents than others.
I don't understand why the events have played out the way they have, but I am lifted up by the pieces of good and encouraging news that get sprinkled in Olive's story. Some days (ok, maybe weeks or months) sure seem darker than dark, but our mighty Lord has a perfect plan for His sweet little Olive and her family. I am praying for your strength, your patience, your comfort, and of course Olive's well being. God is very near; His angels are all around the NICU. I pray you can draw near to Him and feel the Holy Spirit around you though it may seem like He is far, far away.
God bless, and you are being prayed for with much love in TN.
I understand the numbness, the sense that if anything can go wrong, it will (isn't that Murphy's law)
I don't think that Jesus is trying to teach you anything during all of this darkness, but that he's there in the darkness, the valley, the pain, with you. I've decided that questioning him why he doesn't do something isn't as helpful as 'Lord, just get me through this because there is no way I can do it on my own. You take care of it." That doesn't mean I don't pray for Olive, for healing, for you, it just means that when I feel like banging my head against the wall or throwing things, he's still there, understanding and loving, and merciful. Most of all he does hear us.
I'm so sorry. Still praying for you. Love you so much.
"...for when i am weak, then i am strong..." 2Cor.12
"...You hem me in—behind and before; you have laid your hand upon me....
Where can I go from your Spirit?
Where can I flee from your presence?
If I go up to the heavens, you are there; if I make my bed in the depths, you are there....
..even there your hand will guide me, your right hand will hold me fast.
If I say, "Surely the darkness will hide me and the light become night around me,"
even the darkness will not be dark to you; the night will shine like the day, for darkness is as light to you.
For you created my inmost being;
you knit me together in my mother's womb.
I praise you because I am fearfully and wonderfully made;
your works are wonderful,
I know that full well.
My frame was not hidden from you
when I was made in the secret place.
When I was woven together in the depths of the earth,
your eyes saw my unformed body.
All the days ordained for me
were written in your book
before one of them came to be.
How precious to me are your thoughts, O God!
How vast is the sum of them!
Were I to count them,
they would outnumber the grains of sand.
When I awake,
I am still with you..... psalm 139
xolovingyou3.
I type medical reports for a living, and I often type shunt replacement parts! I don't know how common it is, like your neurosurgeon said, but they sure do a lot of part replacements for the hospital I type for.
I'm very sorry this is happening to you, but I'm very thankful that they can "fix" the problem.
I have been praying with "zest" for Olive and for all of you. I believe in Spiritual Warfare, and before a person starts praying in Spiritual Warfare mode, they should cover themselves with the Blood of the Lamb of God first, so Satan won't come back on them. I do this, and then I pray as hard and with as much "zest" as possible for Olive's situation, and for all of you. I will continue with the Spiritual Warfare prayer.
"I'm trading my sickness, I'm trading my pain, I'm laying them down for the Joy of the Lord!" - part of the song called "Trading My Sorrows".
Love in Jesus,
Marti B.
Madison Square Church
Grand Rapids, Michigan
My thoughts and prayers are with you. As mom of a preemie, I do know some of the things you are going through. Our little one at 14 months still has the reflux, some oral aversion, failure to thrive , and it is a never ending.
While my lo does not have a shunt, my hubby does, I did not know him at the time but when he was about 28 he was diagnosed with benign brain tumor. After removal, he developed hydrocephalus, and had 2 shunts placed. During his ordeal he had 10 shunt failures before finally gettng them to work right. His lasting effects from this has left him legally blind and grand mal seizures.
You will get there, I know it is hard right now but keep your faith and make sure to take time for yourself too.
prayers to you
Almighty Father,
God of love,
Look down in mercy from above,
And be Thy gracious hands
out-spread.
In blessing o'er little Olive's
head.
Lifting you all up in prayer. Hold fast in the arms of the Lord.
praying for all of you today...also praying for the doctors who are performing the surgery...may God guide their hands while working on her precious little body. sometimes when you are too tired to pray or not sure what to ask God for...just remember the rest of us are holding you all up in prayer. Last night at Gems we made a prayer journal and asked the girls to write some prayer concerns they had. Little Olive was on the top of many lists...she is loved.
Praying that you will feel us all holding your hands while you walk through this. I am so sorry that there seems to be no end in sight. Praying that you will feel recharged again soon. In the meantime know that there is a lot of love surrounding you!
I have no insight or words of divine wisdom. I'm fresh out, but I do feel so very very sad for you in this turn of events. Praying for you daily. HUGS!!
I'm so sorry if my words are inadequate. Just want you to know that you are being held up in prayer
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