Tuesday, October 26, 2010

Olivia's Birthday Gift to Brian...

...coming home. Yes, in fact I am writing this post from our home office with Olivia sleeping (maybe) in her own bed and Tugger sleeping on the floor outside her room. It has only been about half an hour, but we are so happy to have everyone home, except, of course, the birthday boy who is at work.

Olivia did come home with some new medication, one that costs $1300/mo. God bless medical insurance. Guess thats all I have to say about that. She is doing fabulously and is completely herself. I can't wait to dress her up in her new Halloween outfit (courtesy of my sister's in-laws) outside in our leaves with her pumpkin smiling at Brian. Of course, the probably of all of these things happening at once and getting it on film is pretty slim, but we'll do our best.

To the other news of the day: my absolutely fabulous husband is turning 28 today! Happy Birthday, baby! We were laying in bed last night talking about what we thought our lives would be like ten years ago. It was funny because of course we hadn't even met each other yet. Brian would be a sports agent or finance guru living in Dallas driving a fabulous car and living in a fabulous house married with at least one child. Sorry that didn't all come true, sweetie, but everyone thinks your ten year old Nissan truck is pretty fabulous!

So, maybe we didn't get everything we wanted back then, but we feel pretty friggin lucky anyway. People may look at us and think we don't have much, but we do have a wonderful marriage (most days), a beautiful daughter who is such a hoot, a dog who thinks he is a child, a nice house in a city we love, wonderful family, amazing friends and jobs that we absolutely adore. So what if this isn't where we saw ourselves ten years ago. I'd say we made out even better than expected.

The only thing I can say to follow that is that the sovereignty of God is an amazing thing. Its a good thing we don't get everything we think we want. The unexpected usually proves to be a better and more interesting path anyway.

Friday, October 22, 2010

Livi update and fall pics

Here are some pics from a few weeks back at the--you guessed it--Louisburg Cider Mill. Brian and I had a good time and Olivia, well, she slept. Of course she was awake for the rest of the afternoon as soon as we got back in the car. And of course I have no pictures of that. We have a ton more pictures, but in a hurry to get back to the hospital.

Last night when Brian and I called she was going back to sleep so we stayed home. So I will be trudging up there this morning and will be giving you an update soon. I figure she will be going home sometime very soon-the next few days. We are SO excited to have our monkey back home.

Also, this fall has seemed particularly beautiful and lengthy. I promise I will post some more beautiful fall pictures for those of you who don't live in such a lucky geographic region, but here is the "fire tree" outside of our house. Honestly, when the sun hits it in the evening and its this color it looks like it is actually on fire. I know, we're so creative.

Tuesday, October 19, 2010

We saw a smile!

So, I thought they would turn Livi's settings down pretty slow (because thats what they told me) but she must have pitched such a fit that they did it early because last night when I got to the PICU they had just taken her off of bipap! Her face was even cuter than I remember. I didn't get to hold her last night because she was so tired I didn't want to bother her, but I definitely plan to today.
She was on 1L of oxygen on her cannula, but she was doing fabulously, so I don't know if they have turned her down overnight or not. I figure we will move to a regular room today some time.

Thanks for the prayers. The Lord is good to hear them.

Monday, October 18, 2010

Feeling better

Just really quickly...

Livi is still on the bipap but they are turning down her settings and turning down the amount of "sleepy medicine" they are giving her. She is definitely working on being more roused. She was awake for a few hours this afternoon when I was there. We hope she will be off bipap some time tomorrow. Also, her echocardiogram looked better today than last week. Her heart was almost down to a normal size which means it is working much more efficiently. The cardiology team is considering some preventative measures like perhaps medicine and maybe oxygen again just to make sure the sicknesses this winter don't land her in the same place.

In a hurry, will blog again soon!

Friday, October 15, 2010

Quick PICU update

Things have settled down for Livi since being in the PICU. Of course it took several hours and tons of personnel before they got a more durable IV line on her, but thats just kind of her style. They see her name here now and remember her from the last IV marathon--not really the way we want to be remembered, but I guess we'll take it.

She is on the bipap now and her heart rate is hanging out much lower than it was, which is great. She just needed a little extra support, but she is definitely not a fan of the mask she has to wear. It obstructs her hands to eyes for rubbing when she is tired. Brian and I were just in there and she was screaming at everyone for making her so uncomfortable. She is getting a breathing treatment soon and will calm down for the night, hopefully.

It appears that she might be getting a secondary bacterial infection from the blood work they took, so they are giving her antibiotics as well, now.

Most people are scared of ICU, but Brian and I are almost relieved to be here. They remember us, love her, and take wonderful care of her. It that doesn't work then we'll bribe them with some sweet treats that you all have been literally leaving on our doorstep. Seriously, we do bribe them. It can't hurt, right? So we will sleep even better tonight knowing that her nurse isn't scurrying around taking care of five other people. Just her and maybe one other kid. Don't think we'll be in ICU longer than a couple of days, but we're all, once again, on Olivia's schedule. And who knows what she has in mind.

PICU here we come---again

Just wanted to let everyone know that Olivia and still in the hospital and actually this morning she was transfered down to ICU. Lets all visit our third-grade selves and relive a science lesson: Olivia is technically breathing in oxygen good enough, but not exhaling enough carbon dioxide. This is part of the reason why she has been so sleepy (the constant containment of the carbon dioxide in the lungs). Also, the more co2 she keeps in her lungs when she exhales the less oxygen she is getting. So, they are putting her back on her bipap machine today. If she was already on it we could have just used it on the main floor, but since they are going to initiate use again, we have to go to ICU for that.

Her heart rate is still pretty high, but its how her system is dealing with the virus so since her blood pressure is still good they won't give her anything to slow the heart rate down. She is constipated and her tummy is firm and distended, but she has pooped a little bit, so hopefully that will get better too. This is a nasty, nasty virus and we, as always, appreciate your prayers.

As always in ICU we will not be able to use our phones on the floor. There is a computer in the waiting room to update, so we can do that, but it might be difficult to get a hold of us. I don't think she will be in ICU long, just enough to stabilize the bipap, but we will see.

Thursday, October 14, 2010

A Brief Daddy Interlude

So, here is the update...Olivia is still dealing with respiratory issues due to her virus so not much has changed since the last update -- still lots of breathing treatments and suctioning. What is new is a small amount of swelling due to fluid, so they are giving her some lasix to get rid of some of that. Also, her heart rate is still high compared to what her base line is, which is a cause for concern. She had an echo done this afternoon which revealed that her right ventricle is enlarged and not "squeezing" as well as it should, while her left ventricle is a bit compressed, but working pretty well. We are pretty sure that her heart is working so hard because it is trying to compensate for the lack of effort from the right side. They are hoping that the underlying cause for the heart issues is the virus, so they are aggressively treating her lungs to help her get over that. The picture is still muddy right now but when we get to the end of the virus we hope to have a clearer picture of what is going on.

At this very moment the nurses are suctioning her again, but for the first time in days she is protesting. She just slammed her fist on the bed and I am pretty sure she wants to punch our sweet nurse. I never thought frustrated baby could sound so amazing!

We still aren't sure what the next little bit will bring, but we are trusting that the Lord to be everything for Livi that none of us can be for her. Difficult times like these bring us to the end of ourselves and face to face with what should be obvious: We are not God. In accepting this we have the patience to wait on the Lord to reveal himself to us in our trials. Relinquishing control is liberating and allows us to take our rightful place as dependent children in the hands of a sovereign, loving, and powerful Father who is working all things out for his glory and our good. On that note, I will close with a quote shared with me by one of our dear friends here in KC:

"Whatever your circumstances, however difficult they may be, the truth is that they are ordained by God for you as a part of his overall plan for your life. God does nothing, or allows nothing without a purpose. And his purposes, however mysterious and inscrutable they may be to us, are always for his glory and our ultimate good." - Jerry Bridges, Respectable Sins

Thanks for your prayers. We'll post more soon.

Tuesday, October 12, 2010

...and we're back

...in the hospital that is. After the first trip to the ER we came home hoping that we could evade the usually eventual second trip and stay, but turns out that 24hrs later we could not. Livi has another upper respiratory infection. I guess I figured this wouldn't be such an issue now that she didn't have oxygen needs, but we were wrong. She is on oxygen now at the hospital and had a few fever spikes, though less scary and high as they were this spring. This is a short note because I have had about 4hrs of sleep the past 48hrs (both trips to the ER at about 4am and no sleep before then). Brian is out of town, but my mom had already planned to be here. Boy am I glad she came. Livi will be fine, but its a virus and we are planning for the usual 5ish days or so. Hopefully the worst is over--this morning was pretty rough.
We expect her to recover fully and not need any oxygen again when she comes home. I guess no one knows for sure, but thats everyone's best guess. Thanks for the prayers!

Monday, October 11, 2010

Stander and therapy pics

Look, I know they are a long time coming. I will explain why in the next post, but for now just enjoy this beautiful face. Uhh, I mean...in this picture they have Livi walking with a little lawn mower. She likes to try walking, but keeping her hands on that thing really pisses her off. Guess you can see that.

Standing up with a little bit of support and playing with a toy at the same time!

The stander. It looks like she is going rollerblading or something. She is wearing the DAFOs in this picture, but I realize you can't really see them, so I will get a close up next time. This stander also has a tray that hooks on so she can play, but she decided that day to watch TV instead.

Friday, October 1, 2010


First of all, if this post seems scattered it will be because Livi and I are typing it together on an office chair that rolls. All kinds of mess can happen...

So, now that the big goals are out of the way (some of them) for Livi's health care, Brian and I are faced with some decisions to make. Over the past week we have been trying to streamline her therapy since we're kicking that up a notch in frequency and thinking about her long term care. Please pray for us as are given the ability to really make decision that affect her health care for the first time. She will be going to both physical therapy and occupational therapy once a week, we are still getting vision teaching once a week, and will be working on some speech during that time as well. In doing the best we can to get her moving more, First Steps has bought both her new ankle prosthetics (dafos) and a new stander that costs the same as a down payment on a new car. It is amazing and better than we deserve. Thank you, First Steps...and, its pink. What more could a girl ask for?

Please continue to pray for both Brian and I in effectively processing the miscarriage. We had a wake up call yesterday when I went in for an endoscopy. After I signed all the paperwork and had my IV put in they informed me we could not have the procedure done because my urine test showed that I was pregnant still. It is everyone's best (and almost only) guess that this is not a new pregnancy, but hormones still hanging around from the miscarriage three weeks ago. I will have another test in two weeks to confirm, but the news was difficult to hear---that it was still affecting my body, and helped Brian to see that he had not fully processed the miscarriage--which, I will say, I think is pretty normal since the man does not actually carry the baby. Now it is a funny story. Yesterday it was seriously disturbing.

We will be traveling to Lake of the Ozarks this weekend for a conference, so we should have some great pics next week. Tried to get some from this week up, but failed. Will do it soon.