sit down, buckle up and please keep your hands inside the moving vehicle. the PICU should probably come with these instructions because life here (if you can call it that) is a complete roller coaster. if you have been following our updates we’ve just been on a whirlwind of reports, setbacks and plans. allow me to recap a bit for you.
october 4 – otto goes in for open heart surgery for a complete repair of the avsd (hole) and the mitral valve. the surgery at the time was considered very successful and the valve was showing little to no leak. we celebrated and cheered in the waiting room. we were so hopeful for this result but certainly were not expecting it to be this good.
october 5 – otto is in recovery. makes good progress. gets his breathing tube out a few days earlier than expected. breathing looks good. valve shows mild/moderate leaking
october 6 – otto’s progress slows down a bit. we have a relatively low key day but valve is still showing leakage this time classified as moderate plus (some might call severe) this is what we came in with (the valve portion). otto also spikes a high fever. cultures are sent out to the lab to check for infection. he is started on antibiotics and is put back on a cpap to help control his breathing. fever gets mildly under control.
october 7 – otto spikes a high fever again. lab cultures show one with infection one without. they suspect that maybe the sample was contaminated in the lab. new cultures are drawn. otto is feisty and uncomfortable. we start higher pain meds. echo in the morning shows the same moderate plus leak. we began the decision to do surgery again tomorrow (sunday) later decide since he is stabilized to give him one more day. surgery is scheduled for october 9 1130am to attempt to repair the valve again with a patch. if patch does not hold fix with a prosthetic replacement. (worst case scenario).
october 8 – this morning our doctor came to speak to us about otto. otto showed progress over night with managing his blood pressure on his own. he also has shown breathing improvements. we have decided to take it day by day so surgery has been postponed until further notice. we were not given a definite time line but here is what we were told:
otto has done quite well overnight with breathing and managing his blood pressure. he is calm and sedated so i would like to see if this continues. if we can hold off surgery we have a much better chance of getting that repair done rather than a replacement. our number one goal is to avoid a replacement so he can have a normal healthy childhood. his tissue now is so young and fragile it’s almost translucent which makes it hard to hold a patch. we will have a much better outcome if we can get to 6 months and allow that tissue time to toughen up. we are going to take it day by day but if he continues to do well like this i would like to hold off.
we are honestly still digesting this news. after what feels like getting kicked in the back of the knees the last 4 days it’s hard to interpret anything as either good or bad news. we are going to be as patient as we need to be. yesterday i think i was personally at my lowest point. i was down, defeated and wondering just where God was hiding through all of this.
i told a friend yesterday that i feel like my arm is being twisted to trust. i’m upset right now, i’m angry. i’m wondering where God is in all of this. how can so many of his people be praying and nothing be happening. i don’t understand. friends i was in a bad place.
i read something by ann voskamp this morning in her post about the brutally honest psalms.
“do you want God – or do you want things from God?”
“Are you wanting the goodness of God – or goods from God?”
“One is exulting in God and the other is exploitation of God”
“in the wait, if you shift the way you see – and see that the wait could make you into the person you’ve been waiting to become.”
i sat really hard and prayed on this one. for months i’ve been begging and begging God to heal otto. not that i think that there is anything wrong with that. but the human nature side of me is “heal my son… and I’ll do (insert good deed here)” or heal my son or else…. As humans we think God stands reason to bargain.
we can only hope and pray that our desires match his desires. that the wants of our hearts are the same as God’s plan.
yesterday i just prayed that God I accept your will. I pray that it is the same as mine but if it isn’t please give me the strength to see yours through.
that was a hard prayer to pray. i know the future i want for otto and our family. and if it isn’t the same as Gods it’s going to be really fricken hard. but yesterday i just gave it up. let go of what i felt i had control of. white knuckled and finger by finger i fought hard to just let it go and give it up to God.
last night before saying good night to sweet Otto i just whispered in his hear, “you CAN do this. i need you to do this. little Otto i need you to fight and be well. i need you to be better so that i can go on forever being your mom and you can forever go on being my son. my toddler, my teenager, my adult. I need you to want to keep fighting. I will keep praying for you and your heart and your miracle and I will continue to love you with every fiber of my being. I will continue to fight for you until my last breath but I need your help to fight too”. i know it sounds weird to speak this way to a baby but i had to let him know that I depend on him too.
like i said before my friend kristin told me to visualize him healthy and well. to visualize all of the things we are going to do together once we bust out of here. and i think telling him all this is part of it because he needs to visualize it too. even though he’s a tiny baby. he is such a fighter.
my friend tanner came for a visit yesterday and through our conversation we talked a bit about lazarus. how lazarus was healed because of the faith of his friends. yesterday while i was down, depressed and honestly without anymore words to speak i was silent. while i was silent all of the many prayers for otto spoke on our behalf. while we needed a break you picked us up from under the arms and carried us along. God hears these prayers. God performs miracles.
i don’t know where the coming days will take us i wish i did but i don’t. i do know though that God has a plan for otto and while i don’t know it and maybe I won’t even agree with it.. I have to trust it.
thank you again for your faith and prayers for otto. honestly God can work miracles. and we see little ones each day.