Thursday, May 27, 2010

Enjoying being home

Yes, thats right. We got home from the hospital this afternoon after a week and a half. We are so grateful to be able to spend our time all together. Olivia is doing wonderfully--breathing great and gaining energy. She was awake early this afternoon for several hours and has now assumed the position of sleeping on daddy on the couch because...

Mommy had to go on an errand this afternoon. My dr.s office called and said that my blood workup looked normal so I had to go get a sonogram of my thyroid, which I did later this afternoon. Now just waiting for a phone call. We don't really even know what to expect.

Besides all that, we have a relaxing and really fun weekend planned and we can't wait to spend it all together!

Monday, May 24, 2010

We should be forwarding our mail... the hospital's address. Yes, we're still here. Livi kind of had a rough patch around the weekend but seems to be on the mend now. Only time will tell. They have discovered via chest x-ray that she does not have pneumonia, but atelectasis. The treatment will still be the same, but it is good to know anyway. I think she has had this before, but they just called it a slight collapse in the upper left lobe. She is currently breathing well on 3/4 of a liter of oxygen. For those who are not well acquainted with how much that is...they have to bring in a special smaller gauge to measure it in the room. Even though its more than her usual, it is not more than a whiff. Just an FYI, at home is usually on 1/8 to 1/4 of a liter.

We have also found out that RSV (which in any healthy adult can just be seen as a cold) is very high this spring. Livi had VERY expensive shots during RSV season (Oct to March) to ward this off, but its hitting after its usual season this year. Therefore, since she is pretty sick this close to the surgery we will be rescheduling it. I was pretty upset about this at first, but we were informed by the attending physician that a lot of kids who have congenital issues requiring surgery have gotten rsv and are having their surgeries pushed to the fall. It somehow feels better being one of several. Though now, any time she gets a cold we will probably be in the hospital for at least a week and she will require longer and longer to recover as her heart gets sicker. We are speaking with a cardiologist today as we have gotten some mixed messages as to the urgency of this surgery. Hopefully we will get things clarified and the viruses will stop circulating so we can have a great summer!

I also went to the doctor today for a check-up and found that I have a nodule on my thyroid that is big enough to be visible. They drew blood today and depending on how that comes back I will have an ultrasound. Results will probably be in around the end of the week. We're not really too worried.

Our big celebratory news is that Brian is finished with seminary as of this weekend. He is graduated and happy to spend some time relaxing and hanging out with his family, though we hoped it would be at home, we're trying to make the best of it.

I did also have a bit of a spiritual epiphany yesterday morning. I have known for a long time that the greatest good is God's glory, but somehow it is really difficult to see that through circumstances. Even if just for a short while, I finally really understood that for the first time yesterday. Though we hate for Olivia to be sick, her suffering has brought Brian and I closer to God, to eachother, and to our community of friends and family. We understand things about the Bible we did not before simply from having a new perspective. Olivia's suffering is not ok for me--in fact, it is the furthest thing from that, but perhaps if so much good comes to so many others souls, perhaps brings them to the Lord, then how can we not be grateful? Understanding is coming through time and through trials in the Lords way. We are always thankful for His love and provision.

Friday, May 21, 2010

Ornery Little Girl

We interrupt this program for a small break for daddy to display his less than stellar compositional skills. I can't compete with Kel, so be patient with me.

Anyway, we are still at the hospital and while we thought we figured out what was wrong (a potential positive RSV test), we just found out that said test might have popped up in the computer from a previous visit. Helpful, huh? What is odd about the whole RSV thing is that Livi received some very expensive shots to keep her from getting this particular virus. However, according to the attending, since flu season happened in the fall, RSV season came in the spring...translation: after Livi received her entire round of shots to prevent the virus when it was supposed to happen, it was "sneaky, sneaky" (Mr. Deeds reference for Kel) and came afterwards. How nice, right? I think I might need to take this girl gambling somewhere because if there are odds to be beaten, she wins! At any rate, we were planning on getting out today, but it looks like we are going to stay another night.

On another note, I just spent the entire night with my little girl and thought that this would be an appropriate time for a brief examination of the English language...

Ornery - mean-spirited, disagreeable, and contrary in disposition; cantankerous

While you might look at her and think she is the sweetest thing ever, the above definition is still appropriate. Exhibit A: she was having a rough evening so I decided to stay with her last night. When I returned to her room, she was asleep and breathing fine. In an effort to watch her for a while I stayed up until around 2 am. Until that point, she was sleeping well and breathing fine, although a little low for her on a good day. So, like any fatigued parent would do, I made the bed made of a plastic mattress with paper thin sheets and laid down to rest. About that time, Livi decided to wake up and scream, as if she knew I was going to sleep. So I walk over to the bed, pick her up and SHE QUITS IMMEDIATELY! She then falls to sleep, so I carefully lay her down and lay myself back down. Then, it happens again! Long story short...we slept together in the awesome plastic recliner in the room until about 5:30am. In a word...SPOILED. Then I put her down again...commence the screaming. Fortunately, the care assistant came to my rescue and held her while I got 2.5 hours of sleep.

Examination of the English language complete. I rest my case. Thanks Livi for expanding our vocabulary!

Tuesday, May 18, 2010

First Night Away

Lets see if I can remember how it happened...

On Saturday evening livi started getting some cold symptoms--mostly runny nose--but was fine besides that. Saturday night no one got sleep because she started coughing as well and would only sleep on her mother on the couch. Sunday, as I said in the last post, we stayed home from church. About 7pm or so on sunday she got a fever about 103.5 so we took her into the ER again. After the motrin kicked in she was even breathing better and acting better than her usual self, so we convinced them to let us go home at midnight with the understanding that if she got ANY worse we would bring her back in. During that time they had turned her oxygen up because her nose was so stuffy it couldn't get through well.
Five hours later we were going back to the ER and then were admitted to children's mercy around 7am--on about two hours of sleep. There wasn't much of a chance for me to sleep since people are in and out so often until the afternoon when I snuck in 45min, but that was as much as I could get even though I was getting dizzy and fuzzy head.

Meanwhile, Olivia's afternoon was excellent and she had cleared out the mucus, but after some feeds during the day it returned thicker than before and her breathing last night was very spotty because she couldn't breathe hardly at all through her nose. About 10pm last night they decided to try and thin out the mucus by feeding her only clear liquids, so at 11pm they were putting in an IV. It was about that time I realized I wouldn't get any sleep with the monitors continuing to go off. Crying, I called my mother and then my husband realizing to be a good mom I would have to go home and sleep--my first night away from Olivia since we got her home from the hospital.

I am at home now, anxious to take a shower and return to see my girl, but infused with eight hours of sleep and feeling great.

Essentially, all this trouble in the hospital is because of a runny nose and a slight cough--another virus. The fevers have been fewer and less severe than a few weeks ago, but I plan on staying a little longer this time with the breathing difficulty. This also could push back her surgery but we won't know until we get discharged or after. It also is not great timing because Brian will be graduating on Saturday and we will be seeing Livi's Nana and Papa for the first time since December this weekend--we would hate for it to be in the hospital. We will pray for her to be alert and awake so they can see the real her anyway.

As usual, it is not all bad. Again we have seen the usual enormous support for our family. My dear friends Maggie and Hannah came to visit to bring lunch and dinner. My dad was "passing through town" again as he somehow always is when Livi is in the hospital and we have seen other friends just stop by to check on us. The Lord uses you all to comfort me in the most beautiful way. Thank you. Thank you. Thank you. What else can we say? We will keep you posted...

Sunday, May 16, 2010

My attempt at words of wisdom

Its Sunday morning and we are not at church--at least Livi and I aren't. She had a strange night last night of dropping her oxygen to uncomfortable numbers for Brian and I and then going back up to breathing well almost right away. She sounds like she has another cold--which I am hoping is some kind of reaction to the strange shift in weather we've been having. This morning she is doing much better, which is fortunate because I don't know if I can make it through another sick bout. But thats not why I'm writing...

I was just preparing for some time I spend with a college girl on the weekends doing "discipleship". I guess thats in quotes because I feel like I'm not very apt at it. Anyway, I was reviewing some questions we meditate on to help us reflect on the true station of our hearts. I stopped at one that said, "What do you think about most often? What preoccupies or obsesses you? In the morning, to what does your mind drift to instinctively?"
Me? Lately about Livi and what I can do to help her x,y,z... And those things are okay and even good to think about, but not to have sole ownership of my thoughts and actions, because then I begin to believe that I have control of any of those things--which by now I would be a fool to think that I could.

I oscillate back and forth across this fine line of believing being a good mother means doing everything I can for her, and believing I can change circumstances if I just work hard enough--do enough--want it enough. Again, I should know my lesson on this by now. Sometimes I do have a proper view of this, but usually only after I am smacked out of a time of belief in myself and my own control.

This morning I am reminded of who I am and who God is. I am reminded of my own capabilities and my own role as a mother. I am to do the best job I can to care for her and love her. This does not include obsessing when I am "resting" so that I have to continually take excedrin migraine to function when Livi wakes up from her nap. My role is to believe in the person and work of Christ. To believe that He has total control of the entire world, that He loves Livi and our family and that His good will be accomplished in His time and in His way--and then to live like I believe that. That...that is the difficult part. Apart from the Holy Spirit I will never be able to do that. The task seems completely daunting and inconceivably impossible. Its a good thing its not just up to me, then.

Trying harder doesn't fix things--believe me, I've tried. Allowing God to release myself of the power the idol of control has over me and living and walking in a way shows that I believe Christ and what he said and did won't fix things--probably not the way I want them to be "fixed", but it will allow me to experience joy in my life because I believe God to be sufficient for all things--even for my daughter, even for my headaches, even for the unknown and the future.

Sorry if this turned out choppy--I was interrupted for snot and mucus duty about ten times while I was writing this. Back to "resting" then... :)

Friday, May 14, 2010


First of all, thank you to my lovely husband who captured the best part of mother's day. It was about fifteen minutes after this that all FOUR of us were in the bed together.

Yes, we've been around, just kind of busy. Not really hectic busy, but thinking and planning busy--which is almost more exhausting and far less gratifying. We are beginning to see a crossroads with several areas of our lives.

The most prominent is Brian's school/work situation. Since he is graduating in a week, we are attempting to make some kind of plans of how our lives will be different then: job wise, economically, insurance, time with family, stress...the list goes on. Since we don't exactly have this planned out yet we'll have to be okay with the nebulous concept and see in a couple weeks if things are clarified for us.

Also, making a lot of decisions, though some for later, about Livi's care. We are considering changing pediatricians to one who specializes in neurodevelopmental things and has patients who see a lot of specialists at mercy like we do. I hope it works out. Also, trying to get her on the wait list for the preschool for ccvi or tlc. We just upped some of her meds last night because her seizures have been worse the past couple of days. So the next few days while she gets used to the new dose there will be a lot of sleeping. We are also thinking about alternative diet plans instead of just pediasure and gathering information and specialists with that.

Thirdly, we are having (finally) an electrician come out to fix the basement and downstairs wiring issues. I will finally be able to do my own laundry in this house! (kind of excited, but its laundry, so not TOO excited) he will talk to us about the upstairs wiring after this part. We also had an HVAC guy come out to the house. As the electrician, he was none too pleased with the job that had been done on the house. we basically will need a new airconditioner and furnace. The old ones work, but its difficult getting good air to the second floor without it. We can make due for a while.

Promise I will try to be more diligent with the blog thing.

Wednesday, May 5, 2010


Things at our house have finally calmed down. Livi is feeling much better. Actually, she seems to finally be over this cold she had and everyone is getting more sleep. She is doing so well, in fact, she seems to be improved socially, strength-wise and cognitively from before she got sick, which is interesting. She is REALLY wanting to crawl, so we work on that quite a bit, which turns out to be good exercise for me since she is weighing 25 lbs these days. She is almost holding herself up in crawling position. Its the balancing she has the most trouble with.

We had a FABULOUS weekend last weekend. Grandma, grandpa and aunt mal. Aunt mal and Livi and I had girls day on Saturday. Her wedding dress came in and we went with her to try it on again and then went shopping and had lunch. Chipotle looked like this...

Oh, I guess looking at this picture made me realize too--the helmet is gone--for good! One thing down, just a million more to go. And the hair...still deciding what to do with the hair...hmmm....

Thanks to a wonderful birthday present from Aunt Beckie, Uncle Bill and Cassidy, we had a family pass to the Kansas City Zoo and used it for the first time yesterday. It was a blast for mommy who met up with her friend Kari. Livi loved it. The whole two hours looked like this...

I called genetics and all the tests they sent off but one have come in. All "normal". Didn't expect anything differently I guess.

Brian's school is finished in 2 1/2 weeks and we CAN'T WAIT! I am so proud of him, and so ready to experience marriage when one of us isn't in school. We are so looking forward to the summer for a ton of different reasons. Can I say it again? CAN'T WAIT!!