Friday, March 30, 2012

See my pretty face?

The surgery went well and the trach is in place. Livi was trying to fight through the sedation today to say "hello" but they are keeping her VERY sleepy until tomorrow--then they will start to turn down her sedation.

Isn't she beautiful?

Thursday, March 29, 2012

Surgery tomorrow

I haven't actually talked with Ear Nose and Throat in a week, but Livi's surgery is still supposed to be tomorrow to get her trach. At this point we are almost excited about it just so we can move on. Livi is actually not sick any more and has just been hanging out on the ventilator all week waiting for surgery, which stinks, but are options are pretty limited if we want her to be ready for surgery. She has been on a lot of sedation (because she has developed a tolerance for those medications, she needs more than before for the same effect) which means the withdrawal will be more difficult, but we can start weaning sedation as soon as she has her trach in. It will be so strange to see my little girl with this new thing on her neck. It'll take some getting used to, but the prayer is she might not have to have it for forever, just depends on how she develops neurologically. She will have it for a minimum of a year, though. So, in light of that, here is a beautiful picture of my girl (vented, but beautiful) without her trach.

Her tongue is out because I had just put some chapstick on her lips and sedated though she might be, she is still her ornery self-- licking all the chapstick off the minute I get it on there.

Gabs has decided she is a grown-up now, sitting in her bumbo and playing with toys. This monkey sings and dances and she LOVES it--babysitters take note.

Sorry the posting has been few and far between. Partly because we have a computer on the fritz and partly because Livi's been the same--sedated and waiting for surgery all week. We would LOVE your prayers tomorrow and we'll let you know whats up as soon as we know.

Wednesday, March 21, 2012

Come and hear...

So I (Brian) have been putting this off for a number of days. Not because I didn't want to write, mind you. It was simply because I have been burning it at both ends for a couple of weeks. I am rested and up early this morning, so here we go. I can't actually write to you about all that the Lord has been teaching us in this season in one post. That would be far too long. The plan is to post several times to break it down into smaller chunks.

It occurred to me about a month ago that many of you were asking how we were doing in large part because of your concern for us, but also because you are trying to make sense of everything just like we are. Hopefully this one and the coming posts help you just as the scripture, thoughts, and prayers that give rise to them have helped us.

So I invite you to walk with us for the next few days with the words of the Psalmist...

Come and hear, all you who fear God,
and I will tell you what he has done for my soul.
Psalm 66:16

Tuesday, March 20, 2012

Vented again

Just a few hours after I published the last blog post Livi made a fool of me again. She had been doing well on bipap, but turns out the virus was causing more problems than we knew it would. She is now on a ventilator, but seems to be doing pretty well. Her settings are pretty low and she is sedated so much that she isn't frustrated by the tube down her throat. Ear Nose and Throat surgery team decided they wanted to wait until next week some time to perform her tracheostomy--in hopes that the few extra days that gives them will allow her to get better from this virus. We hope so too. So, in the mean time, we are trying spend a little less time at the hospital (since Livi doesn't even know we're there) and leave her in the capable hands of the wonderful nurses we have grown to more than appreciate. 

Brian and I are still trying to navigate life with two kids and one in the hospital for about two and a half months now. We are growing and learning so much, but for reasons that we hoped we would never have to. The Lord has been so gracious to give us a spirit of unity and peace so that instead of being stressed and arguing all the time, we are trying to use these lessons to grow closer together-- become better parents, better spouses, and more like Christ. 

Gabs is Gabs. She is such a delight and stink'n hilarious most of the time, now. Giggly and silly and going 90 to nothing non-stop. Its going to be hard keeping up with her once she starts moving very far on her own. She already is pushing herself on her back a few feet at a time. I can't wait for her and her big sister to spend more time together.

We love you all and thanks a ton for all your support!

Saturday, March 17, 2012

See? This is why I don't blog...

Its not that I've been avoiding you, or not wanting to fill you in on whats going on with us, specifically Olivia. Its just that (sigh) every time I do, within the next five hours whatever I told you is a lie and Olivia and the doctors have decided something else. Here's what started happening the second after I posted the last time on Monday (more or less):

Olivia's seizures have been better since getting the doses correctly, but she has been having much more trouble with the withdrawal than I expected. She is on two medications daily and they have been decreasing these doses everyday--medications that they give drug addicts to help them with the day after finishing the last dose of one of these medications Olivia had significant withdrawal symptoms including shaking, yelling, sweating, high heart rate and fevers.
She is back on both of these medications still. She also had increased problems breathing again. After going back on the bipap they discovered she is having trouble pushing air back past all the soft tissue at the back of her throat because there is a narrowing of her windpipe back there. In addition to everything else, it also appears she had a cold. See what I mean? Every time she has a new symptom it could be these three things, and since the cultures take time to grow out, you know 3 days later what that one fever was for, or maybe it wasn't the illness, maybe it was just symptoms of withdrawal....

So, after all that, this is where we have landed...Olivia needs to get out of the hospital, sit up, regain strength, and start moving in the right direction. So, another surgery is needed. Olivia is having a tracheostomy afterall. Probably sometime next week, but we have to wait on the surgery schedule to say for sure. I know I was just saying we didn't ever want her to have to have a trach, but it does not appear that she will need to be ventilated through it, so there shouldn't be any tubes hooked up to it, at least during the day. It seems that this is the only way to get her out of ICU in a timely fashion, so that is what we will do. One more hole, one more scar, one more surgery. Of course there are risks and downfalls with the trach--it is not a fix all, but the opportunities for a better and easier life far outweigh the risks--which are pretty minimal.

This surgery feels different--Olivia will have a device placed in her body where everyone will see it right away. She'll "talk" different and "look" different right away to people-- to other kids. Instead of feeling sorry for her, I feel proud. Proud of what she already has and what she will teach people-- gown-ups and kids--about how being made in God's image can mean more than we immediately think. God has made my daughter incredibly bull-headed and persistant. Thank you. She has made good use of it.

Don't hate. I WILL let you know when the surgery is scheduled for as soon as we know. Updates on my 3 month old (no lie) and the ramp (being finished soon) and the CCVI Trolley Run in April (we'll ask for your money) will be posted shortly.

Sunday, March 11, 2012

An actual miracle

I haven't posted since Monday because Brian and I were not sure how to share what was "really" going on in our lives with Olivia. It turns out, her breathing problems weren't from pneumonia. I will spare you all the medical details, but her brain wasn't telling her body how to breath very well. There was a possibility this was from the medications she has been taking for withdrawal, her seizure medications, or that it was something called central apnea. Central apnea means the problem is in her brain and we can't fix it. All we could do was surgically put a port in her windpipe (tracheostomy) and use that to have her on a ventilator at home. We honestly believed this is what the Lord had for us and Olivia. Brian and I would have to make a choice about how much we wanted Olivia to be dependent on machines for her survival-- we would have to choose.

It seemed for a few days that this outcome was inevitable, but all of a sudden-- and I believe this with my whole heart--God intervened again and saved Olivia. It turns out her breathing trouble is probably from her withdrawal medications that have been depressing her system which means it makes the information from the brain to the body a little disheveled and slower. Also, her seizure medications were not at a high enough dose to be effective, so on on top of that she was having more debilitating seizures causing more confusion in the brain and therefore the body. Once those doses began to change Olivia came off bipap and we began to see our little girl come back to us.

We think she is getting out of ICU today, which is great, but she still has a ways to go. We now have to wean BACK off the breathing treatment to start her regular feeding regimen while still evening out some medications for her, but it seems we are on the right track. Tuesday we thought we wouldn't ever bring Olivia home again. The Lord has done a mighty work for sure. Your and our prayers have been answered again seemingly and hopefully to bring out little family back together again soon.

Brian plans to write a few posts about scriptures we relied on this week and how the Lord has changed both him and I in good ways through this crisis. Be patient, but excited. My husband is pretty awesome.

Monday, March 5, 2012

unfortunate retraction

Remember when I said Livi was coming home this week? I lied. Over the weekend it became apparent that Olivia was getting sick AGAIN. She actually has another pneumonia. Yesterday morning was really rough for her and she was having a lot of trouble breathing. The afternoon and evening brought some improvement, so we hoped that it was getting better. As my friend put it, midnight to 6am are the witching hours in the hospital. That is SO true. Livi is always changing things up in the middle of the night.

After getting up about 2am to nurse Gabs this morning I called the hospital to check on Livi since I was already awake. The woman at the desk who answered the phone said, "actually, the physician is here to talk to you." Never good. In case you were wondering. Long story short, she had more trouble breathing again last night. More than the actual oxygen amounts are the pressures it takes to open her airways. Remember the pumonary hypertension? This is where it comes into play. Since the heart and the lungs work together essentially as one organ system, a problem in the heart effects the lung and visa versa. Livi's heart defects (which are fixed) are still causing some pulmonary hyptertension which effects the pressures needed to "pop" her airways back open, especially when she is sick. So, now Livi is in ICU again, on bipap (the mask that helps keep the airway open, very similar to CPAP). She is not on a ventialator, but this is known as non-invasive airway support. Its just a mask, no tubes down her throat. Other than that, I don't have a lot of information or a crystal ball-- both of which I would like. I don't know if she will get as sick as she did before. Probably not, but since she wasn't 100% when she got the second pneumonia there is no real way to tell.

We will keep you as updated as we can. I'll leave you with a picture from last week when Livi and I were cruising the hallways in the hospital and having a grand 'ol time.