The end is near

Really disappointed in myself for going so long without blogging. Livi is still in the hospital, but coming home (drumroll, please) hopefully mid week next week. We CANNOT wait. Our little family will be together again for, basically, the first time. That is both absolutely exciting and terribly frightening. Brian and I are measuring and deciding if we will need some help around the house for a bit and if we do what kind and who. We are no closer to a decision than we were a while back--it is all depending on what Livi is like when we bring her home. We'll have some differences to our routine: new wound care, a bit off of preschool, more sleeping, less ability to move. I have no idea how we'll work any of these new details out, but I am honestly so afraid.

Livi is frustrated a lot more than I am used to hanging out in her hospital bed. She is most herself cruising the hallways in her chair, it seems. She is just totally bored in her room after this many weeks. I just want my same 'ol girl back, but then again, she will be turning 3 in  a month and who knows what changes that will bring. If the weather keeps up hopefully I can get both girls out on the new porch we'll have soon and entertain everyone.

This beaut is from earlier this week when I was able to drive Livi up and down the hallways. She has also more recently stood assisted by her physical therapist for up to 2 minutes. It was not a happy 2 minutes, but she worked hard anyway.

This goofball is a total lunatic. Her moods are as up and down as the weather, but she is totally funny, so it makes up for all the craziness.

And baby makes 3

So, first off congratulations to my sister, Malarie and her husband Allen. This morning they welcomed their first baby, a daughter named Emerson Yocum McFarren-- all 6 bls. 6 oz. of her!

So, the "3" is for them, and Emerson is also the third granddaughter in our family--thats right--all girls. Yikes! The other two are ours and are doing well.

Olivia is still in the hospital and its hard to say exactly how she's doing--better than a week ago anyway. I spoke with her dr. this morning and feel encouraged about her long-term stability, but I think getting her well enough to be home, and then back to herself after that is going to be a very long process. Brian and I are loving seeing her awake and snuggling with her when we can get up to the hospital, but are still grieving the loss of her presence at home and the loss of some of her personality and skills because of the illness. We are confident she will gain those back, but we miss our expressive little diva. Until then, we are basking in whatever time with her can get.

And finally (sigh) Gabs. You are two months old and we are having a hilarious time figuring you out. Most of the time you are very happy and content little thing. We LOVE happy Gabs.

You still only weigh about 8 pounds and are our teeny tiny little nugget, but we're so proud of you. Just this morning you are really figuring out how to put your hands in your mouth. Can't wait for that stage. You are the burpingest and fartingest little girl ever. Its hard not to be proud of that. You're also pretty cute whether you're happy or not.

These three ladies are going to rule things very soon in our family, and we can't wait!

Cha-cha-cha-cha-changes

Yesterday, for the first time in a month, we got to see Livi in a "regular room"--she is officially OUT of ICU! I caught her after her physical therapy and her breathing treatment, so she was awake for a bit, then pretty tired, but beautiful nonetheless.

Anyone is able to go visit her now without checking with us, so please understand this as a formal invitation. I can't be up there too much, so if you are in town and want to say "hi" we would love it and I'm sure she would too. They'll tell you where she is staying at the security desk. We gotta have SOME privacy- puhlease!

Also, on the most bitterly cold day of the year so far, friends assembled, once again, to work on the porch/ramp. Framing was the word of the day.

I really felt beside myself more than usual last Saturday when the boys came to work. I realized that even though they knew just how sick Olivia was, they continued to show up and build something she might never get to use. When Brian expressed our gratefulness for their perseverance our dear friend said "we're just working like we're praying". I guess thats all that needed to be said. We have the best friends in the world--I really believe that.

Also, thanks to everyone for praying/giving for the ramp project. I believe that we have raised enough to complete all the projects on the budget. Honestly, when the total amount of $10,000 was first expressed to me as the budget I doubted that it would ever happen. The Lord is continually breaking me of my pessimism. I hope I'm learning my lesson. But don't worry, we're not done hitting you up for money. The CCVI Trolley Run (Livi's preschool's annual and main fundraiser) is coming up, and you better believe we plan to make you all join us! Its just 4 miles. No biggie. Details coming.

Perspective

One of Brian's least favorite things about me is my tendency at certain times to be a little dramatic. I know, right? You can't imagine that. Rest assured, this is not one of those times.

So, the last day or so, or really the last few weeks, I've been trying to figure out how I would explain the emotions our family has been going through. I allow myself plenty of tears and emotions, but mostly in the privacy of my own home and not for the entire Internet or hospital to see. I'm not sure I need to just dump our entire thought processes over the blog, but I did want to make sure you understand something: we were very close to losing our little girl to this illness. I know it sounds more sterile when all I relay is percentages of oxygen and vent settings and feeding regimens and x-ray images. I have wanted to explain this for a while, but somehow while Livi was so dangerously sick seemed like an inopportune time. No one said "she might die" but we all knew that was a possibility and that fact has been highlighted even more now that she seems to be getting well.

When the ICU doctors walk by, lean in your kids room and smile two or three times an hour after she is off the ventilator, then offer to take a picture of you holding her with your phone (even though you're not supposed to have your phone on), you know something must have been up. The doctors are, of course, very kind; however, ICU doctors are kind of a whole different breed--not emotionless, but very composed. They have to be. Their joy at seeing Olivia well seems that it comes with a strand of surprise.

Also, I was informed by wound care that the pressure sore that has been on her back ( I don't remember if I've told you about that) is probably something other than a pressure sore. Wound care nurses from outside of the hospital were consulted about the sore and it seems that it is probably actually something called Kennedy Terminal Ulcer. Stop. Don't do it. I know you're going to want to google it. Don't. Its super depressing. Suffice it to say that when the body gets so sick it starts shutting down "less important" organ systems. Like the skin (also Livi's stomach had slowed way down and stopped doing its job). The most immediate organ systems need the energy, so certain things in the body kind of stand back. The ulcer, they think, was the skin organ beginning to turn off. The terminal part actually means that-- most patients end up dying--not FROM the ulcer, but what the ulcer says about the body's sickness. Could they be wrong? Of course. But Kennedy, the nurse who it is named for, was also consulted and sent a picture of it and thinks that probably what was going on.

All this, plus so many other small things make it easier for me to tell you thanks. I know that so many of you were praying. Listen: your prayers mattered. They are still mattering. The food, babysitting, cards, the 6 men standing outside my house in sub-zero weather putting the first beam for Livi's new ramp down...it all matters, significantly to us. There were days when I was so beside myself with the possibility of what might happen to our family that I could not use words to pray, but it was ok, because I know so many of you were.

We thank you, and at the same time give acknowledgement that total control belongs to the Lord. Not just when good things happen and she gets well, but when things we don't want to happen come to fruition as well. Apparently Olivia's job here is not done, and we are so grateful for that. We get to spend more time with her.

We would, course, covet your continued prayers. We are finding out more everyday how being this sick has ravaged Livi's body. She is still not moving a ton and will have trouble building muscle back up and learning to use her body again. I am sure we still do not know the full extent of the damage. Will send you more pictures when we see her awake more. Thanks. Thanks. Thanks.

Guess what we did today?

Thats right. My girl got off the ventilator. As you can see in the first picture, she still has some sedation on board, hence the google eyes and the silly grin--nevertheless, such a beautiful sight. She will be in ICU another day or a few, who knows. The doc says she will also be in the hospital for Valentines Day, but hopefully in a regular room on a regular floor. Thanks for all your prayers. I'm sure we will be posting plenty of pretty pictures and happy updates often.

4 weeks and counting

Livi has been hospitalized for 4 weeks now. We are past being sad about it and working our way through the fatigue. Luckily, we have amazing friends and family who make our otherwise impossible life not only do-able, but really enjoyable. If I say thank you again, is that overdoing it?

The beginning of last week was a difficult time for me. After being extubated and reintubated on Saturday, I did not expect her to be doing worse on the ventilator by Monday. As previously explained, that was due to the collapsing of some of the smaller sacks of the lungs. Even still, Monday and Tuesday I was concerned that she was actually going to get well. She looked more tired and exhausted than before and was not fussing around as much (something I usually take as a sign of her personality shining through). Wednesday brought some relief in this area. When I went to see Livi she was fussing around and opened her eyes and turned her head to my voice. With all the sedation her eyes were still pretty googly, so I don't actually know if she could "see" me, but she knows I was there. Since Wednesday things have seemed mostly better. Of course, most days things go up and down and you end up about where you started, but it seems the last few days that she is making a run for it again.

Her daily x-rays show that her lungs are popping back open where they had collapsed...she is getting a little food again (last week her stomach wouldn't properly digest any food)...she is getting fewer sedation meds...they are turning down settings on her ventilator daily. She has had two fevers the last two days, but we're pretty sure its from a UTI (waiting for cultures to finish growing out). There was a question of her having a pretty concerning stomach disease that affects proper digestion, but they did a test yesterday morning that shows her stomach is working well-- thank you, God. This illness is SO out of the ordinary for us that I asked a nurse I had grown to trust how concerned the medical team was. She assured me that kids with chronic lung problems have this much trouble reasonably often--I just hope this doesn't turn into our normal.

All in all things seem to be looking up. Maybe we'll have some good new for you in a couple of days.

Updates all around

So, since I don't actually post as much as I mean to, this post will cover all the high points since Sunday. Ready?

Olivia is doing about the same, maybe a smidge better. Its so hard to say because she's up and down depending on the hour. I talked with the doc this morning and he said that its not just her, that several kids with this human metapneumovirus that she has have been taking an extra long time to get rid of it. That is both comforting and not. The past few days for me have been pretty emotional and I am playing out scenarios in my head. This is both helpful and not helpful, but today has seemed better--for me and her. They are moving to turn things down again, very slowly, and hopefully this time it will stick. The reason for the "worsening" after Saturday, we think, is due to some collapsing of the smaller sacks of the lung. Its an issue she has often when she has upper respiratory infections, but being already sick and on the ventilator it has set her back a few days. We don't have any new pictures of her. Unfortunately she looks about the same as she did a few weeks ago--just sporting new barrettes now--orange flowers.


Gabs is insane. We absolutely love her and she is proving to be a wild woman already. She is 7 weeks old today. Can you believe it? So, I get this text Monday night. Brian had been letting her cry for a bit in her bed, but going upstairs to check on her. It usually just takes a few minutes of whining now, if that, for her to sleep, but tonight was different. He went up to check on her and found this...

...So this is one of those swaddler blankets, which apparently suck. Admittedly the nightgown is a little big, but really? See the red eyes? When they get their tear ducts working it makes the crying so sad!


Also, we had another work day on the ramp this Saturday. The stone pillars that were on the old porch were dissembled and concrete was poured on the corners of the new porch so they can be re-assembled as part of the new porch. Awesome, but my lazy rear would never go to that much trouble. Apparently, under our dirt lies a quarry, which, fortunately for the boys, meant they would have to rent a jackhammer make a hole big enough for the pillars. They were really torn up about it too.