Sunday, January 31, 2010

Doing better all the time

Livi is continuing to develop and learn new things. She spends much more of the day awake and allows her brain to soak things up. Her body is also growing. You would think that Brian and I both were 7ft tall. She is huge! Wearing 18mo shirts so they're long enough to cover her belly. So, of course, we had to buy a new carseat.

Brian had an interesting time putting it in the car. Of course its snowing outside and freezing. The box doesn't fit in the trunk, the back seat or the front seat. So he had to break down the box and take the seat out and shove them in the trunk because all of Livi's other stuff was in the back seat. All my friends think I need a minivan. We might be looking at needing a bigger car in the next year or so. I really do enjoy not having a car payment. I will be sad when that goes out the window. So, back to the carseat story. It was actually strangely similar to the me and the new stroller story. Brian's was slightly more NC17 due to language, but about the same situation.

This week we actually have no medical appts that require travel on our part. Whatever shall we do? Tuesday CCVI (children's center for the visually impaired) here in Kansas City is coming to the house to re-evaluate Olivia. The first time they tried it she slept right through it. Of course it is schedule for 10am--right in the middle of her nap. Oh well. Wednesday is OT at our house in the afternoon. Maybe I could get some work done on the house. Thinking I might try to paint a couple of the small rooms in the house this week. Its about time we started making it ours.

Wednesday, January 27, 2010

Catching up with you all

Sorry I have been so negligent. We have been busy with company-- so fun for us, but not the best for updating blogs. Here are some pictures from the past few days...

For starters, the Kid Kart is working out great! Even though its an extra trip to the from the car to get the seat out of the trunk, its well worth it. Its great to have in the house so she can play and learn while I pick up the house or just play with her, but able to see her face. Since it tips almost all the way back she can also nap in it during the day. I am learning to be a little more seamless folding and unfolding it. Monday Livi had a sleep study at Mercy South (which went well I guess) and I was yelling at the stroller behind my car in the sub-zero temperatures trying to figure out what I was doing wrong that it wouldn't unfold. We have since worked out most of the kinks. No one was hurt, except my hands from standing outside in the terrible wind chill.
Right now I just have to schedule ten more minutes than usual for the extra trips to the car and the shaking and karate chopping I do to get the seat in the stroller. All in all, one appointment that lasts for an hour takes us in real time about two and half hours plus. That includes 15min of driving. The rest is getting things in and out. Or like today when our dr. dropped by our therapy appt and asked that we stop by the lab on the way out so they can test her electrolytes (which I just got word are perfect). I did stop by the lab and the pharmacy to pick up a Rx. Though the tech knows Livi and did very well with the stick, it pushed our out of the house time to three hours...for one appt.
In other news, apparently now insurance companies are paying people for being good parents. I now get paid gas mileage reimbursement by the insurance company when I call in saying I went to an appt. This information would have been handy for the past eight months, but I'll just take what I can get. Unofficially, I get paid $2.50 (really a little bit more) for driving Livi to one appt and then going back home. Livi's piggy bank will be very happy twice a month now.
Also, the bath seat is making its way to our house tomorrow morning. I am VERY excited to use it, except now bath time will include filling up the entire bath tub. Guess my piggy bank money can go to the extra water bill. :)
Livi has been doing very well lately. She decided to play hard to get at therapy today, but then of course woke up about ten minutes before it was finished and has just fallen asleep officially about a half an hour ago. Almost four hours of awake time. Good job, baby! She has also gotten back on some kind of a routine with sleep. She is up now in the mornings around 6:30 or 7 which means mommy needs to learn to go to sleep earlier than she has been. 11:30pm will not cut it any more. She usually takes a good nap about nine to noon (probably induced by her meds) and then wakes up for a while in the afternoon. Takes another nap around four to six and is up for a bath and to see daddy then goes back to bed about 8:30 or 9. Still a lot of sleep, but what an improvement!
Well, I promise I will try to be more loyal to the blogging. Thanks for reading.

Thursday, January 21, 2010

The Kid Kart

I am attaching some pictures of the Kid Kart, but this is just one of it's faces. This is the main seat hooked onto the regular base. The base rolls on four wheels and has brakes. Its mainly for house use for us. There is also a tray and an oxygen tank holder that hooks on the side, but isn't on in the picture. The tray has already come in so handy and is allowing her to play with toys and see them on her own. She hasn't been holding up toys on her own much, so this is allowing her to see things right in front of her face and the head rest makes sure of that.

The stroller base is currently in the trunk of the car. I ventured out this afternoon with very little practice with the whole system, but we made it just fine. Its a true blessing to us. I am getting ready to cook and wash dishes and Livi is sleeping in the chair, so I can just roll her and her oxygen, and her feeding pump in all together to the kitchen so I can keep an eye on her, allowing her to sleep through the whole thing.

It is also bringing up other things to think about, like do we want to build a wheelchair ramp on the side porch of the house that goes into the living room or no? Not for right now, but maybe in a few months we will, or if she learns to walk but needs a walker or another device for a while then should we build the ramp? All things we are considering for later days. One of our wonderful friends already volunteered to help us build one (he has the know-how and the tools).

Also, Brian in particular is having to deal with the emotion of people knowing that Livi has special needs before we even meet them. It is difficult to explain except that while you are so proud of your child you want to protect them from the thoughts, looks, and words of others. At the same time, it is a time to teach others about every person being different and individual--especially kids.

For the moment, at least for me, the new system is a wonderful way for my life to be easier and for Livi's life to be more productive and educational. I feel that she is beginning to discover new things already.

Wednesday, January 20, 2010

The new wheels are here

Olivia's Kid Kart will be getting here tomorrow some time and the technician will spend some time teaching me how to do everything. I am SO excited! The chair should really help out at home and the tray will be great for playing. Olivia is also just shy of 21 lbs. which means we will be shopping for a bigger car seat before she hits 22lbs which is the weight limit on the one we have now. Too bad insurance doesn't cover that one too :)

Cardiology appt today was good. We have a follow-up at the beginning of April (right after her first birthday) and then we will officially schedule the surgery.

Brian and I are continually learning patience and endurance. When Olivia started doing better on her new medicine I guess secretly we were hoping she would just take right off and learn a bunch of new things and be able to do them all by herself. Though she is awake more still and always improving, it is at what seems like a very slow pace to us. Today we started to have some difficult conversations about future "what ifs" and changes in our lifestyle, housing choice, and whether or not to start a college fund or another kind of account for her. We can never know what will happen, especially with Olivia, but its good to take inventory of all the possibilities and to prepare the best you can. The Lord has been so kind to us and blessed us immensely.

On a side note, Brian and I are sending out our newsletter for ministry. If you want to get one and don't usually then let me know and we can fix you up.

Monday, January 18, 2010

Some things calming down

Conveniently, as Olivia's appointments are calming down Brian's schedule is getting ready to rev back up again. School starts for him the first of February. He is speaking at a conference for FCA this weekend, then in two weeks traveling to Austin, TX to attend a conference with some guys from church. College ministry is picking back up since the students started back last week and he is working at a private school's aftercare program a couple of hours a day. Despite all that, we have somehow managed to still see each other relatively often. I guess we've had a lot of practice trying to work each other in the schedule. Who am I kidding? I guess he is the only one now working me in his schedule. Brian's graduation is in May (yay!) but I assume that will mean things will only get busier in the summer and not easier.

Livi is still doing well. We were advised to take her meds back up to where they were pre-admission to the hospital. We have found that this is the fatigue culprit and I will be calling the doctor again this morning to ask if we can take it back down since it seems to have no affect on the seizures. Besides therapy once a week, we basically have only about one appointment a week.

I will be working getting a schedule down for myself during the week. I think I will cancel our home health day shift (it just seems in excess) and will volunteer once a week at the church to give myself time out with adults and something I can count on during the week. I can take Livi and get some work done there (though I'm not sure anyone else can. They all like to play with her.) I am desperately looking forward to the spring and walking in the park again. This spring we hope to not be in the hospital a whole month and will be able to enjoy the weather. We are also awaiting the delivery of Olivia's Kid Kart and bath seat. They have been officially ordered and approved, so it should just be a matter of time now.

We seem to have gotten to some kind of comfort level with the pace of our life. It feels easier and simpler to look at the calendar, make our way out into public, and do things we want to do and not need to. We are grateful to the Lord for our life--all of it. Now it is hard to imagine it any other way.

On tap this week: therapy and cardiology follow-up. We, of course, will let you know how it goes.

Saturday, January 16, 2010

Just some pics

Yes. Tugger and Olivia are holding hands. Go figure.

Wednesday, January 13, 2010

this day was GGGGREAT!!!!!!

So, I don't know if it was like this all over the country today, but it felt like spring. I guess not having to wear a coat and seeing the sun really colors our idea of the actual temperature. I think it was 40, which felt like 70.

In other news, Livi's therapy appt this morning was really fun and exciting. She smiled for someone other than Brian and I (which is really rare. Especially since it was our physical therapist who stretches her 'til she yells). She talked, played, is working on sitting up (if we can ever keep that head from bending all the way backwards), and was overall in a very good mood. Assuming she was tired, our home health nurse, who is coming during the day once a week now, tried to get her to go to sleep. As far as I know she only made it an hour this afternoon. The rest of the three hours has been filled with our nurse singing to Livi in her rocker trying to get her to relax and go to sleep. I went to Target by myself for the first time since I don't know when and spent money on bigger clothes for Livi. She is growing like a weed. We can't make it stop.

Between all of the wonderful little things, the day and really the week, is shaping up to be one of the best in a very long while. Perhaps since this summer. We are very blessed. There is no other way to say it.

Sunday, January 10, 2010

Going Home!!!

Leaving the hospital in a few hours. She had such a good couple of nights with no desats that they gave up on us and are letting us go home--without, I might add, any more machinery.

Moms 1

Saturday, January 9, 2010

More questions, no answers

We will be here at least two more nights I think, which is fine. They are not sure what is causing her oxygen saturations to fall. They are happening less and are less severe so I'm hoping she just stops doing it all together. They are only happening in the middle of the night, which makes it difficult to pin on apnea (since she is sleeping soundly during the day as well) or her medication doses (which she gets twice a day--every 12 hrs.). So far the doctors answers are to either get CPAP and go in the PICU, or take her meds down a touch (like .25ml) and monitor her for a few days. We chose monitoring in the hopes that she would stop the desats and we could go home with no more machines.

Only time will tell. Really Brian and I wanted to try the least invasive thing first. If she needs the CPAP machine then we, of course, want the best for her and will bring it home, but if she doesn't we don't want to have to strap a mask to her face all night if its not helping. So, for now we are still here--our second home. Everyone has been wonderful, as usual.

Olivia had a pretty good day today. Unfortunately, only grandpa Don and daddy got to see the majority of it. Mal, mom and I were out picking out (and buying) her wedding dress, which is amazing and absolutely perfect, and the bridesmaids dresses, which I am a big fan of.

Friday, January 8, 2010

Still here

So I'm not sure what to write because everything is still up in the air right now. They think the breathing trouble is from apnea, but it doesn't totally fit the mold. The doctors will continue to consult and monitor her at least one more night, probably more. If they think the problem is apnea they will give us either a CPAP machine to go home with or BiPAP. You can look up information on them if you don't know, but they both are masks you wear when sleeping that both blow air and monitor how often you are breathing. In order to go home with one of these machines you have to stay in ICU one night while they monitor the monitor (go figure) and the settings on the machine. So, right now we are in the regular room, but if she gets the CPAP then she will have to stay another night in PICU.
This will all be settled at the end of the month when Olivia is scheduled for a sleep study at Mercy South-- they don't do them at the downtown location which is why she hasn't had one during this stay. They take blood gases and have all kinds of tests they run while she is asleep and this will help us determine for sure if she is having apnea issues.

All that to say, I have no idea when we're going home or if we're going with new machines or what, but she is being monitored very well, and by now we know a lot of the nurses, therapists, doctors and residents. They take very good care of us and are really making the stay as comfortable as can be. She is also continuing to improve with her awake hours and productivity. We see more and more of her personality each day and she is enjoying her time reading books and learning new motor skills. Her favorite toy is her father, who essentially does whatever she wants. I'm sure you can all imagine. Even all of the doctors call him a flirt. He has no hope.

Thursday, January 7, 2010

Staying tonight too

Sorry this is so late in the day. We were not sure for a long while whether we were going to get to come home today. The answer is no. What we do know is that she did well this afternoon on her sats and she has another eeg scheduled tomorrow morning at 7:30am. Why are we always getting the earliest slot? Guess I should be grateful. Past that, we don't know much of anything as far as our future here in the hospital. They aren't giving her anything we don't have at home, which will hint at how many home health machines we have sitting around the house. We actually need to rewire the electricity upstairs to accommodate the need for electrical outlets in her room.

Also today, we experienced just a little bit more of Olivia. Brian and I stepped out to the cafeteria today for some "fresh air" (the fresh air outside is too cold. The high tomorrow is 0, yes 0 degrees). When we got back in the room she was just waking up from a good nap and when she saw Brian and gave us the biggest smile we have ever seen from her. Ever. The next hour was magical--playing, some talking, mom and dad trying to teach her how to clap when we say 'yay', a little more smiling, even for mom. Its like getting to know your kid for the first time when they are 9 months old, after you've already fallen in love with them. It was the most beautiful hour of her life so far, and it was in the hospital room, but no one, including us, seemed to care.

Thank you for prayers. The Lord will always answer them in His ways. We are grateful that at least for now these are His ways.

Wednesday, January 6, 2010

Olivia is confused

I don't think she heard us say that we postponed her surgery for tomorrow. I think she woke up this morning and said, 'I think I'm supposed to go to the hospital today, so lets go' because here we are. Yes, I am writing you from our room at Mercy tonight. We left this afternoon after she had some small breathing episodes this morning. We contacted our pulmonologist and they said come up to the ER. The ER said come on up to a room. I'm not sure whats going on. I think they're making sure the medications are making her too sedated to breath normally. Since we've been here she's developed a little cough, so maybe thats it.
Who knows that tomorrow will bring. No more snow I hear, so thats good. The foot of snow in our front yard doesn't need any more company after the last three inches came down today. I'm hoping we just are staying for the night, but it depends on Ms. Olivia's 'performance' tonight and the drs tomorrow morning. Who even knows any more.

For now we all are doing quite fine. Brian has made it home for the night in the blizzard. Tugger, I'm sure, is happy to have someone to spoon with. Livi is doing fine on her regular amount of oxygen and is on no extra medicine, just IV fluids to make sure she doesn't aspirate formula that gives her pneumonia. I am looking forward to someone else feeding and tending to her tonight. Maybe I can get some sleep. All in all, it looks like we'll make it, but we'll keep everyone up to date on tomorrow's proceedings.

Monday, January 4, 2010

No surgery, this week anyway

We have decided, after conferencing with all our doctors and support staff, to give Olivia a little more time to improve before we ask her to recover from a major surgery that would put her on bypass and wire her sternum together. Though everyone agrees it wouldn't be wrong to do the surgery this week, her improvement on the new medication has given everyone hope that by therapy and medication we can make her stronger, thus allowing her a better chance at recovery. That is the short of it anyway. We showed them all the video of her (that I have now tried uploading to Youtube and still won't work) and they were like a proud bunch of grandparents. Very intelligent and professional doctors smiling ear to ear pushing each other over to see the video of Olivia come to life again. It was remarkable and very reassuring. We feel that we are doing the right thing by allowing her some time (maybe a few months) to get better on her own.
So, there will be at time when surgery will come, we're just not quite there yet. Thank you all for your prayers and please don't stop praying. We're on a long road here and it could go one of many different ways still, but we seem to be headed in the right direction now and we are grateful to have our daughter back.

So sorry about the video. Maybe someone else can figure it out. Until then, we will keep putting up pictures.

Friday, January 1, 2010

Slowly but surely

Though the seizures are still a part of our lives for now (though fewer), we are learning that Olivia's personality is also starting to be part of our lives. We knew her for a few months and then its as if she went away on a vacation and is just now beginning to return. She is not here in full form, but creeping up on us, which makes me concerned for the teenage years.
Though we have not witnessed consistant smiling in several months, we are just now starting to consistantly hear frustration and discomfort, which is a wonderful milestone. You can bet (I've seen this before a lot) that when a child cries continually and loudly some place in public, the NICU mothers are the ones who smile and seem almost happy to hear the noise.
For example, when the prostetics man (I guess there is a word for that) was making a mold of Olivia's head for the size she screamed for almost a half an hour. I wasn't bother, but almost encouraged by it. The real kicker was the woman who works at the front desk, Donna, who I have grown to appreciate, seemed almost in tears to the hear the cries. She knows what its like. Her baby was born very early and was in NICU for much longer than we were. She was so proud of Olivia in that moment, and so was I.
In the past week or so Olivia has continually grunted in frustration and even cried when she is uncomfortable or most when she is so tired but cannot sleep. To hear any noise from her a true blessing. I know the smiles and coos will come later, but for now the cries are just as sweet to hear.

We are truly blessed to know her and to be her parents. She teaches us things everyday and pushes us to be better people--to love better. I have learned that our life is different--mostly slower than everyone else's--but it doesn't mean that the things we do are less meaningful or important. The Lord is so good to bless us with this wonderful child who, we are learning, brings out the best in us--in everyone.

The news of the day goes to (drumroll...)

My beautiful sister and her amazing husband to be! Congratulations Mal and Allen. Well, congratulations malarie; allen, I know we've all hung out together quite a lot, but I sure hope you know fully what you're getting in to. I couldn't be there, but here is a photo I jacked from my mom.
In other news, the care conference with all of livi's doctors and us to decide surgery or no is on monday at 1pm. I sure will be keeping the blog up to date that afternoon.

I also will probably be posting pictures of some beautiful razorback cookies that I am making for the game tomorrow. I hope the cookies aren't the highlight of the viewing party. Shout out to Santa for the wonderful razorback cookie cutter in my stocking!