Extubated!!!!

Olivia is off the vent and breathing very well on just a little bit of oxygen through her nose. Her blood gasses look great they say so we should be good to go as far as that is concerned. She is getting ready to sleep for the night and so am I--not far away in the Ronald McDonald room in case they need me.

Thank you for your prayers. Thank you Lord for hearing them.

Weening the vent...

She is doing really great right now. Her numbers look good, but they are taking their time. They have given her some meds to make the breathing tube more tolerable. Maybe they can extubate today--maybe tomorrow. We'll see.

Slow and steady wins a trip home

They have found a wonderful sedative that Livi responds great to. I don't know the whole name (hospital slang) but they call it "dex". It keeps the pain to a real minimum and she is mostly sleeping. Every few hours she rouses for a few minutes. We see some eyes, head turning to see who is there, some arms trying to stretch and wriggling and then goes back to sleep without any more meds. This is wonderful because it allows them to decrease the amount of other meds she is getting and some settings on the vent. She is having a great day--very uneventful. She also has not had tylenol for over six hours and has not had a fever. We will keep our fingers crossed. Her urine output is much better today which means the fluid in her lungs is decreasing and her swelling is really going down, though I didn't think she had too much to begin with.

We'll be several more days in the ICU, but if she continues on this steady pace it will be an easy to swallow few days. Our nurses and doctors are WONDERFUL! We get one (and today two because of orientation) nurses all to ourselves. I usually have a lot of stress trying to look after her in the hospital, but no need right now. They more than have it covered. Our clinic docs have stopped by to say hello, which is nice. Our nurse from Wednesday still pops by to say hi and actually remembers my name. In the hospital we are always affectionately referred to as "mom" and "dad", but this nurse not only asked our names (a first) on Wednesday, but remembers them! Its a small thing, but a nice thing.

Thanks so much for the prayers. We would not be in the same place without them for sure. We still need more as Olivia, though she is doing well, has a long way to go. But, slow and steady...

The first 24hrs

Yesterday when we left the hospital Livi was doing exceptionally well. This morning when we got here she was doing pretty well. Sometimes the second day is the hardest. She is still intubated (on the ventilator) and trying to rest. Really her breathing is not the problem--they are keeping an eye on her blood pressures to make sure they are stable. She spiked a couple of fevers last night but came right down with meds. I have an overwhelming amount of information that seems technical now, so suffice it to say she is still doing pretty well considering what happened to her yesterday. She may not get off the ventilator today, but not because she couldn't, but she might need more rest and pain meds. We have not seen her eyes because she is resting, but we hold hands with her a lot and she squeezes them really hard--she knows we're there.

Thanks for the prayers and I will update as I can and as things happen (or don't). Thought pictures might be out of the question right now, but if she is looking better later today will at least take some. The swelling isn't horrible, but no one looks great after that trauma, not even beautiful Olivia.

Through the surgery

And finally...the surgery was finished this morning around nine and we got to see her around eleven thirty or so. She is still on the ventilator, but resting really well. They will keep her on the vent and the meds tonight just to let her rest, but she is not showing signs that she wants to either fight it, or stay on it, so that is good. Brian and I have spent a few hours with her, but she is not supposed to wake up until tomorrow, so we are trying to get in some naps, some sunshine, some not caf food, and rest. I think I even will be staying at home tonight, but checking in with the nurse whenever I wake up or feel uneasy to see how she is doing.

They have no real idea how long anything will take, but I am feeling more patient than usual about the vent and the overall stay. Thanks for the prayers and will update tomorrow if I can.

Its unofficially official...

I figure its nine o'clock at night the night before surgery and no calls or strange things have happened, so we're actually a go this time. Honestly, I'm a little nervous--a lot of nervous, mostly about the first few hours and the ventilator and Olivia's comfort. I know they'll do everything they can. Still, I think its normal to be at least a little nervous.

We will be waking up (hopefully) around four am and heading to the hospital for our six am visit. It will be a long day. After meeting the surgeon and everyone else they will bring her in (my guess is seven to seven thirty-ish) to the pre-op room and then take us to the waiting room. Its a 3-5hr procedure and then she gets an hour in post-op before we see her. Then, after she is settled in the PICU we will get to see her, probably--and this will be wrong because it just will be--between noon and two pm. If we can't get to a computer to update the blog I will ask my mom to do it for me. (Our 'laptop' won't close, so transporting it is pretty complicated and stupid looking).

Thanks for all of the prayers. We have high hopes.

Lord, teach us to pray...

I don't even know how to start this post. I guess I'll tell you what happened this morning. Brian stayed up late working on a sermon (I think mostly praying) for pulpit supply for some friend's church for Sunday and I went to bed early. This morning I woke up to a very lively Olivia at about 7am and her and I went downstairs to start the day. She was funny and energetic, as is her new self (which came strangely but lovely upon us about a month ago). We played and I was changing her diaper and sometimes she likes to hold an extra wipe, so I gave it to her and she clutched it in one hand for a while--then, all of a sudden, she brought her hands together and put the wipe in the other hand. Such a simple transaction like she had been doing it for forever--but she hadn't. I actually haven't seen her do that since about October of last year, just before the seizures started to take over her brain. I yelled up at Brian (waking him up since he had not gone to bed until about 2am I later found out). I told him what had happened and he started to cry. He said he had been reading this book on prayer and it had been teaching him so much. Last night at 2am he went into Olivia's room and prayed for her to keep developing.

You see, even though Brian and I, in our wildest hopes wish for that--for her to gain and develop into a fully functioning person--we bury that hope. Sometimes, well sometimes it just hurts too much to hope that high. We shield our life from the greatest hopes for her except at moments like these because we are weak and sometimes the day to day rigor and disappointments are just too damn hard. It makes us sound like terrible people who don't care. Thats not it. We love Olivia the same even if she can never do another thing on her own ever again. But this wild and untamed optimism that some of you possess (as beautiful as it is) sometimes is painful, and in a need to establish balance, Brian and I swing the other way--we wouldn't call it pessimism, but it might be.

We always pray for God's will to be done. But, the error is that sometimes we go straight to that. And, as Brian was explaining the book he has been reading to me this morning, the problem with that is that it makes God impersonal. I thought this type of praying made me mature, but it was just distancing me from God and from myself. Now we will pray for the things we hope, as Jesus did in the garden. We will pray for insane things that never seem possible--and then we will pray for God's will-- not as a thing to resign to, but to hope for. Eventually the best thing for our family and for the world will be for God's will for Olivia to be done, whatever that is. Lets not pretend any of us know, because we can't. That goes for me too. Now I will pray with confidence and hope that the Lord will restore my child to full function. Yet, even if He doesn't, He loves her more than even I can know and has her best good and His best good in mind. And in the end, if she can do almost nothing on her own, at the very least she has changed all of us forever--what a remarkable thing.

Mommy got played

So, I don't know if God is trying to make me out to be a liar, but I always said that I would be tougher on girls than Brian. So far that has turned out to be true...until this week when I realized that my 15mo. old daughter was playing me.

I'm always preaching to other people (especially grandparents) "just because she has special needs doesn't mean she can't manipulate you. you have to discipline her just like other kids and tell her 'no'." I think I'll be the pot--or the kettle...

Lately more and more of Olivia's personality and cognitive ability has been coming through...and let me just tell you--there is not a ton wrong with her brain if much at all in that category. If she doesn't want to sit in her chair she does this whining/sighing thing (not crying) until I pick her up. She could have been on the floor or in her chair to take a nap (when she is obviously whipped) for up to an hour. When I pick her up to snuggle on the couch suddenly she is asleep in honestly less than two min. Then I wait for about thirty minutes to lay her back down because in a dead sleep this girl is not awakened by a train running through our living room. When I thought I could wait her out I realized my patience for that is very thin. The more tired she gets without sleeping the more seizures she has (does this sound like legitimizing to you?) Perhaps Olivia's brain does not properly tell her body how to coordinate movements, but she can understand pretty well what is going on around her and she will let you know how she feels about the situation. We are so, so, so grateful for this slow development. We could not be more pleased, even if it does mean getting played once in a while.

Aside of playing a lot with a smiling (yes, now for mommy too) energetic little girl, I managed to clean the entire house this week, which to me means that several trash bags of things must be thrown away and another several must be given to charity. If you have seen my husbands wardrobe you would understand...

Here are a few pictures. Brian and I always want pictures of her doing things (which is difficult to do because she stares down the camera like she doesn't trust it when we get it out) but we realized that others of you (nana) just want to see what she looks like now. So, here are a few of those, the last one also starring the present that I bought for her yesterday. As a side note I just want to say I have no idea when the last time I bought her a present was that didn't come from a therapy website. It is fun to spoil. My excuse for this one is that it will hang on the crib in the hospital next week after the surgery and she can hold its arms and legs...sounds legitimate. Right?

My kid--the best faker ever!

At this point I think it would be wise to assume that Olivia is playing all of us and that she just really doesn't feel like having the surgery. This week consisted of: no fevers, not one; very, very few seizures and lots of smiles and playtime. How could be possibly be fooled again??!?!?

The new surgery date is July 28th...at this point, I understand if you want to stop following my blog because my family just seems to be too much drama. Fully expect Olivia to get sick the week before her newest surgery date--just because she can. Pictures to come.

No Surgery Today!

So, we went in for pre-op yesterday and they did all of the pre-op testing. It seemed like we were gonna be able to go ahead with the surgery, BUT Livi's white blood count showed that she has some sort of infection. She is doing great and doesn't seem to be sick at all, but we are postponed once again. Thanks for praying. Sorry for the emotional roller coaster. More details will come soon.

Congratulations to my seester!

Yay for Malarie and Allen who were married yesterday in Ft. Smith, AR (my sister and new brother-in-law)! I was lucky enough to be there and the (huhmmm) matron of honor. Yuck on the wording, yay on the post. It was an absolutely gorgeous wedding of which I was, of course, in and got to take almost no pictures. I am waiting on some to be emailed from my mother but in the mean time, I will post some new pictures of Livi featuring the beautiful new hair bow given to us by Malarie's new sister-in-law. It is SO cute and we LOVE our new family members! Sadly, because Livi's heart surgery is scheduled for Tuesday, her and Brian were not able to go to the wedding and we were all absolutely devastated.

It did turn out to be good that they stayed, though, because 4am on Sat. morning Brian had to drive Livi to the hospital for an almost 104 temp. After one dose of Motrin she was fine and they came home two hours later with a chest x-ray and no pneumonia. Today when I got home she was so awake and absolutely fun to play with. We don't know how this fever will affect the surgery--they may decide tomorrow morning in pre-op that they don't want to operate that close to a fever so high. We go in for pre-op tomorrow at 8am and will let you know what is going on as we know things.

Here is a pic of miss livi...cute as ever.

Too much fun?

As you can see, we had quite the fun time with our friends last night after a very hectic day and not very productive napping. This seemed fine until about 2am when Olivia seemed a little agitated and coughing from all of the saliva she is producing while rubbing her tongue on her gums and teeth. Thats when I woke up. 4:30am--thats when both Olivia and I finally went to sleep again. This morning, about 8am or so I woke up to find that though Olivia had been sleeping soundly, her heart rate was a little high and oxygen sats a little low. I took her temp and was devastated to find it at 99 degrees. Seriously? Again? What is it? We CANNOT push the surgery back any more!

I woke Brian up and sent him to the drugstore because we were out of both Tylenol and ibuprofen. I was almost to the point of tears as her heart rate and oxygen seemed to not get any better over the next hour. No fever above 99 degrees, but we had three cold washcloths on her. Finally, at the end of my rope and ready to lay down for a nap Brian and I hear a VERY loud stinky, wet toot coming from Olivia. I swear, I couldn't make this up if I tried...a ton of wipes, even more paper towels and two plastic bags later Olivia is rolling around on the floor, sats fine, heart rate fine, happy as a clam. No temp. The girl just needed to poop--again. Go figure!