Wednesday, December 30, 2009

New Germs:(

So...Aubrey woke up this morning with a fever and a very snotty nose. (I did take a picture, but will spare the world of the giant snot:) It was a good thing we had an appointment, because I would have had to call and try to make one this morning if we hadn't.

So the good new is that her lungs sounded better today than last week, so we will wait on a chest x-ray. But her cultures from last week show a bacterial infection, so she is fighting something new now which is probably why she has stalled a bit on getting rid of the oxygen and really bouncing back. They did a repeat flu and rsv test, both were negative, and then did some other "snot swab" tests and we will see if those reveal anything new.

So he put her on antibiotics and upped her nebulizer treatments to 5x a day again. If her fever is not gone by Friday, we are to call the office and they will consider another x-ray and possibly a bronchyoscope, a camera procedure. My understanding is that most of the time the germs in your nose are the same as those in your lungs...but not always. Since all of her nose cultures have come back negative, they would need to take a look at her lungs to see what is going on there that they can't figure out.

Woody basically sanitized her entire room right down to cleaning the carpet and wiping down the bars on her crib and dresser. A slight cough for us is such a new germ for her, that it just takes over in her. So we just have to try and keep all possible germs away until she can get on top of this thing. I am hoping that things will be better once the big girls go back to school next week and she can just kick this thing. Keeping Ella's grubby hands off Aubrey is much easier than keeping three sets of hands off of her! We are really gonna buckle down this week though and get her over it, I hope. I would rather her live in a bubble (her clean room) for a weekend, than drag this out any longer.

We will keep you posted.

Tuesday, December 29, 2009

Doctors Visits

First things first...cute Christmas picture...then the update:)

We have been busy enjoying the holiday (I will post Christmas later) and have been doing the busy holiday things, since I was so behind because of the hospital stay and sick kids...but....the packages are almost all sent (just 2 left to address and tape up) and the Christmas cards are almost all done.

Aubrey went to her 15 month "well child" visit yesterday. She is officially 14lbs 15oz and 26.5inches long. She is following her curve and is proportional, which are the most important things:) We talked about her recent "medical history" and gave the nurse her new list of meds. But it always feels like there isn't much else to say, but keep plugging along and do what you are doing. She looks good.

We explained the crackling of goop that was still there the week before and he confirmed that there is still some noise there, but he didn't really have a base line of goop to compare it too. So I toyed with calling the pulminologist and then decided to let it go.

She got the second H1N1 shot and we were on our way. With the fourth kid, maybe they think that I still have brain cells and remember what to watch for with the shot or the fact that she already had one and did fine. Whatever it was, they didn't tell me what to watch for and we actually could have used that information...

Oh, and Alice had her ears checked and she has an ear infection! So later that afternoon, Alice and I went to run some errands and pick up her new medicine and came home to a big surprise. Aubrey had slept for 4 hours and woke up screaming and with fever. I panicked!!! And mentally I was packing my bags to go back to the hospital. She was 100.5 (.5 below go back to hospital number we were given on discharge) and her breath was fast and she was just laying on Woody's chest with her eyes just glassed over:(

Woody always keeps his calm though and we got her some applesauce and all her meds (including Tylenol) and nebulizer and got her hooked up for the night. And he called our dear pediatrician at home. I am such a nervous nelly now and I kept checking on her every 10 minutes, but she seemed to rebound after the Tylenol and finally settled down to sleep and was fine the rest of the night. The good doctor called this morning during breakfast to check up on her (did we ever mention how much we appreciate him...well we do...he is one of our biggest blessings!).

This afternoon the Pulminologist called to check on Aubrey (did we ever mention how much we like them too:) and it seems that the x-ray that we took last week...showed now improvement over the one we had taken 7 days earlier, right before leaving the hospital:( She is slowly improving, but I think more than anything, they just want to keep a close eye on her to make sure that she is actually going forward and not stalled out in her we will go in tomorrow for a check up and will probably go for another x-ray. She is doing much better with her oxygen this week, almost never except when sleeping, and even then she isn't needing much to keep her stats up. We are hopeful that that is a sign of improvement and her lungs will sound better and look better too.

We will let you know what we find out tomorrow. Pray for a healthy new year at our house:) We can cram in a few more things in the next two days, but come Friday, I want all healthy reports:)


Thursday, December 24, 2009


So here is an update on how Aubrey is doing, I know it is long, since I am a little behind on posts. We went to see the pulminologist on Tuesday to have a recheck. He just laughed again, because Aubrey doesn't follow the book on anything! He said that he could still hear some "goop" in her right upper and middle lung. 4 days of mucomyst at home should have been enough...sigh...but they weren't. We have moved to a SYMPTOM schedule instead of a DAYS schedule. Meaning we will do the mucomyst nebulizers until she stops coughing during the treatment. He feels that once she is able to get over that part and get all the goop out, she will be able to completely come off of the oxygen. We have successfully been able to wean her during the days, but continue to use it at night (if she keeps it on) and whenever we are away from the house.

We will still have to keep her pretty isolated until she has fully recovered, but will just have to be SUPER GERMAPHOBIC after that. She will keep doing at least two nebulizer treatments through out the season. But mostly it will be just keeping tabs on how she does. We will keep the oxygen for at least two weeks after she is done with it, since she doesn't follow the book and may relapse. We will keep the pulse/oxygen monitor for a couple months, to do frequent checks. It could be that her oxygen levels dropping is her sign that she is sick versus a runny nose or cough. So we will try it, but won't really know until she gets sick again, but hopefully it will enable us to catch her cold earlier and avoid hospital stays. If that is her sign, we will likely keep the machine.

He ordered another chest x-ray, just to keep tabs on her since she is not a "typical-follow the book" patient:) I had wanted to get pictures of this to show you what they do for her. They have this little table with a hole in the bottom and a bicycle seat for her. Then I hold her arms up and they have this plastic "tube" with hinges in the front and back and it goes around her and secures in the back. This keeps her still and positioned just right for a good x-ray. (She doesn't like it too much:) For her, they can actually tell how straight she was because of the ties they used internally during her surgery. It is kind of neat to see her x-rays.

She is doing well at home, though I think her sleeping habits are a therapists worst nightmare! But this is very typical for Aubrey asleep or awake:)
Here is Aubrey playing with some of her new equipment. The large tan thing is an oxygen compressor. Instead of having tanks, like in January, we have this and it compresses the oxygen in the air to deliver to her. It is pretty cool how it works, but I'm sure when all is said and done, we will need "white noise" in her room, because the machine is not really quiet.
More sleeping flexability.
She is facinated with herself in the mirror and loves talking to herself, though I think that she was confused at first with who this girl with the new face accessories was:)

We love the new cow jammies that Grandma Olson sent us this week...
but they were a little big and as you can see, between the big jammies and all the cords in her bed, she had some issues. (Quick take pictures...then save baby:)
Isn't it in the parent/baby handbook that you shouldn't even put blankets in their beds at night to keep them safe?!?! Kind of seems odd to then hook them up and hope they stay safe:)
Grandma Smith sent us some new leggings to keep us warm while we continue with all the cords.
As you can see, Aubrey goes with the flow and is just as content as she always was. She is such a good patient and takes it all in stride. We are so thankful that she is home for Christmas and are thankful for all of the wonderful doctors who take care of her. We are very blessed in that department and appreciate all the love and care that they give to both Aubrey and us.

(as for the other girls: Ella finally got over the fevers on Sunday and we are just treating that nasty infection now, Kate's pinkeye is cleared up...but she gave it to Alice and Aubrey first! So now we just line them up in the morning for the eye drops and antibiotices!) We are hoping for a clean, healthy start to the new year!

Wednesday, December 23, 2009

Send your own ElfYourself eCards

Thursday, December 17, 2009

Discharge and Recovery

I know everyone is wondering how we are doing, so here it is...

We found out Tuesday morning that Dr. Rembecki was making arrangements for us to go home. I am glad that I had the good sense to ask that our prescriptions be called in so they would be ready when we left the hospital and we wouldn't have to fool around at the pharmacy:) (I'll get to how wrong I was later)

I had an appointment at 2, so our good friend Christy came to "babysit" again. After my appointment, I tried to pick up the prescriptions, but they only had three of the seven! (Would have been nice of them to call and tell me that in the morning, so that I could have tried to get them someplace else!) So I got what I could and headed back to the hospital. I asked the nurse if she knew where I could get the last couple. She suggested the pharmacy downstairs! Why didn't I think of that! How easy that would have been!

So we checked out of the hospital. Christy was wonderful enough to help me downstairs and waited with crying Aubrey, while I went to the pharmacy to get her stuff. Pharmacy had ONE! And they didn't have the actual presciption, so I waited while she called the doctor to get all the information and then prepare the drug. We were finally on our way out to the car with a stroller full of stuff, crying baby, oxygen tank (at least it has a wheely cart) and two bags of drugs. (we will pick up the final script tomorrow)

It would have been so lovely just to get home, but we had to stop at Dr. Rembecki's office to get her synagis shot (her appointment had been that morning). Unfortunately, the people who give those, leave at 4:00pm (something he failed to mention), but they were gracious enough to let us in and after sitting for 45 minutes (in a sterile room though) we were granted the last shot of the day.

We got home about 6:00 and quick grabbed some dinner before her next treatment at 7:00. We were so unorganized and had to get the big oxygen tank and everything set up still. By 9:30, we were exhausted and went to bed. The last two days have been more of the same. Ella (3) has been running 103-105.8 fevers, so I have been splitting my time between the two of them trying to make everyone happy and meet their needs. Ella having been to see Dr. Dan today is still no better tonight, so will probably be going back to see him tomorrow.

Aubrey's Plan:
We are doing 5 breathing treatments a day, every 4 hours ( he so graciously said that we could skip the 3am one!) We are alternating between two different nebulizer treatments. 3x a day we do xopenex and pulmicort, which is what we had done for maintinence. 2x a day we do a 3% saline solution first and then do a second nebulizer of xopenex and mucomist (it smells like rotten eggs). This one we follow with the Cardio Pulmiary Therapy--CPT, which involves patting on her lungs with a little pink "cup". She is still taking her regular med for the small leakage she still has as well as, a steroid for a couple days, prevacid to keep her tummy from getting upset, 3 different nasal sprays, mylacon drops (because apparently her x-ray shows that she has pretty bad gas or as he put it "a man burp in there", and she is on oxygen... and has a pulse ox monitor...

We are able to wean her of the oxygen as she tolerates it during the day, but are to keep her on it at night until we see him in the office next week. Let me tell you how this is going...She takes it off her nose at night and keeps her stats up just fine. She leaves it on all day long, and can't keep her stats up! She doesn't do anything by the book! Her progress is slow and steady, but she is keeping her numbers higher than she was at the hospital and her stats don't tank when we do her treatments like they used to...slow and steady...patience...We will know more next week about our maintenance plan to keep her healthy and what we need to do at the first signs that she is sick. Her immune system is weak and all indications are that she will have troubles every time she is sick. God has blessed us with a wonderful team of doctors to take care of her at all times and we are gracious for them. We continue to have confidence in their abilities to make good choices and suggestions for her health.

She is happy to be home and so are we. We could do without the equipment, but it will be gone soon enough. We are so thankful once again for all of the continued prayers for strength and health, as well as those who are looking out for our "tummy health":) Meals are certainly not necessary, but sure are appreciated at the end of these long days.

Tuesday, December 15, 2009


Just a quick note, that we were discharged this afternoon and are setting up and getting organized at home. I forgot how much work it is to come home and set everything up again. Will post more tomorrow.

Rachel and Aubrey

Monday, December 14, 2009

The Hospital Lists

(yes we are still here, but working on getting out of here, so I will post about that later)

10 Things we aren't enjoying at the hospital

10)The height of the crib (ok for tall guys--not ok for short mamas)
9)Handicap bathrooms (same as the crib-great for tall people-annoying for short:)
8)Therapists come every three hours--even at night
7)Nurse brings med by the clock, not when it is convienient for the baby (example-not when she is SLEEPING)
6)We might as well be in the Northern Blizzard right now, our room is so COLD at night
5)Food takes 45 minutes to get here and is sometimes a little soggy;(
4)Repeatedly being stuck by needles
3)Taking x-rays
2)Only being able to go about 5 feet from your bed

And the Number 1 thing we aren't enjoying at the hospital:
We are away from Daddy and the Big Girls:(

Top 10 things that we are enjoying about our hospital stay:

10) Someone else gets to change the linens.
9)Someone comes to clean and take out the trash EVERY day!
8)Someone else is making breakfast, lunch and dinner for us AND doing the dishes.
7)The nurses and respiratory therapists are AWSOME and we have actually had some of the same nurses several days in a row as apposed to new people every day. (here she is with the percussor, she likes to help, but it vibrates and they use it on her chest and back to help break up the "goop".

6)The beautifully decorated rooms.

5)We have portable oxygen for walking the halls

4)Our doctor comes to see us early in the day instead of at night.
3)They have a playroom full of all our favorite toys...right across from our room!

2)Aubrey is learning new tricks: She goes from laying down to sitting up in the crib, she is pulling up on the sides for the crib to get onto her knees (so close to getting up on her feet--maybe tomorrow) and today she repeatedly signed "more" and even signed "thankyou" to the therapist this afternoon!
1)Aubrey is getting better and better every day!

Thank you for all of your suggestions, prayers and support. We are just waiting on the doctor and should be out this afternoon. She pulled her oxygen off most of last night and was able to keep up her stats and was off and on this morning, but doesn't need much when she is on, so we are hopeful that there will be just a little more recovery at home.
I'll post later when we get home.

Day 7 -- One more test

Dr. Rembecki was here at lunch. "She is a tough one, isn't she?" he said with a grin. There has not been much change from Saturday until today as far as lungs go. Her energy is definately back and she seems so happy to get out of this room finally for our little walks. All her tests are done and are negative, so it is just her addiction to this oxygen that is holding her here.

He is going to do one last chest x-ray to be sure that she doesn't have a problem area of mucus in her lungs. He is working on setting us up with home oxygen again, and will release us with frequent office visits, until she is off. For those of you who remember post surgery, we had a GIGANTIC oxygen tank at home and tiny ones for going to office visits. I shuttered to think that would be the case again and he assured me that we would work something else out, since I can't possibly keep her in one room at all times again. He is aiming for tomorrow sometime.

This gives me great hope and joy! God is so good! It will be nice to at least be home under one roof again. Once I know the details I will pass them along. Thankyou for all of your continued help and prayers.


Sunday, December 13, 2009

Sunday--Day 6

So overnight, they did have to bump her up a bit. The days are starting to run together, so I don't know how much they bumped her up, but I do know that she hasn't gone over 1 liter since yesterday afternoon!

Dr. Rembecki was here this afternoon and was surprised that she hadn't had more improvement, but is pushing forward. Her fiesty nature is giving everyone a joyful challange! She basically needs to get some coughing to get it broken up and out or laughing or bouncing around and moving a bit more.

So...they have determined what therapies are working the best and we will stick with those, but also added more! But it's ok, cause the new ones are kind of fun. After breathing treatments, they usually do this thing where they thump her on the back and chest. I helps to break up the mucus. I will do that randomly during the day and the therapist will now use a new device that is about as big as a donut and vibrates. It was like a mini massage for Aubrey and surprisingly, she LOVED it.

We have also been granted a portable oxygen tank to take walks. Aubrey either sits on my lap or on the floor to play or in her bed...not a lot of movement which is what she needs to help get her over this. We are allowed to "bounce" up and down through the halls as much as we want. There aren't many patients up by us, so we spent 20 minutes this afternoon walking the halls. It is such a colorful and wonderful pediatric place, I'll have to post some pictures of it sometime.

She has seemed really perky and back to herself today, so I am hopeful that this is a turning point...but we are cautiously taking it one day at a time. We are being patient with the time table that God has set before us with Aubrey. He is ultimately in control and has a plan for us...we are just waiting for it all the unfold.

Thank you to everyone who has offered to help us out again. We are humbled by your willingness to cook and babysit etc. We are taking a lot of things one day at a time, but I know that someone is setting up meals for Woody this week and he is playing it by ear as far as babysitting. Kate, as of bedtime tonight, is still running a 102 fever. We don't want to expose her to anyone elses family. Woody is heading to the pediatritian tomorrow to have her checked.

We will keep you posted on the night and anything new tomorrow. We don't have any idea how long we will be here. They have gotten most of her cultures and labs back and all are negative, so another thing to be grateful for. They are still waiting on a couple. I do know that he won't be in to see her again until tomorrow afternoon, so another late update tomorrow unless something big changes.

Saturday, December 12, 2009

Arts and Crafts with Stephanie

This morning I noticed that her cheek was getting irritated by her oxygen tubing. So this afternoon, her and her nurse Stephanie had "Arts and Crafts" time. They wrapped guaze around the tubing and then taped the tubing on. This worked wonderfully and she is much happier now.

The only bad part is that the tape is actually on her hair! I wasn't watching when we put it on and so we weren't careful. I may let the nurses be he bad guys and pull that off when the time comes. I am really tired of being the bad guy and helping to hold her down etc.

Tonight at dinner, her numbers were almost near 100% and so Stephanie lowered it, and lowered it, and lowered it and even turned it off for 20 minutes, but Aubrey started dipping when she got tired, so they set it at .1! Which is like nothing, but Aubrey, our little addict, just has to have something. I am guessing that they will bump it up a little more as the night goes on since she gets into such a deep sleep sometimes, but we shall see. I am not being too hopeful, as we have been down this road before with her.

I have had lots of comments about the Baby Legs. Here is the actual website: I got the pink ones for $4 on ebay (including shipping) but splurged for $7 at Target to get the cow ones. If you are crafty, and have the time, you can buy ladies knee high socks, cut the toes off and hem them to make them even cheaper. I just didn't have the time and thought that these were good deals. I didn't know that they would get so much use though already and am wishing that I had more right now.

Woody has been just the best. He is tackling day to day life with the big girls and also doing laundry and carting it back and forth to me and Aubrey. He is so wonderful. When she was in the hospital for surgery, I was still pumping, so we took turns each night. That gave us each a break from each situation and time to refresh with the other kid (s). So this has been a little harder on us in that aspect. And it is hard to get on the same page, when Woody and I don't get to see each other either.

We got a professional sitter for Aubrey tomorrow night (thank you Christy - who volunteers to sit with babies at the children's hospital on Wednesdays). That way I can go home and be with Woody for a bit and tuck my other kids in and grab what I need for the next couple days. Woody will have a little help tomorrow, so that he can go to the grocery store and restock by himself.

We appreciate all the prayer and love and support that we have been given from both those that are far and near. It makes all the difference to know that we aren't in it alone. Of course we are never alone. Our Lord is always near and that is the ultimate comfort, but it is nice to have physical help too! May the Lord continue to give the doctors guidance, the nurses skill and Aubrey healing.

Day 5 -- Some answers

Dr. Rembecki came by at lunch with some news. Her echo and ekg appear to be "normal" for Aubrey and show no change from the ones that she had in October. GREAT NEWS that it isn't anything with her heart.
Her chest x-ray (he added that one at 7am today) came back as well. He brought me printed copies of all her x-rays and that was really cool! Anyway, the hazy appearance and streaking that he saw on Tuesday and Thursday and now Saturday appear to be moving, meaning that the "goop" in her lungs is just that..."goop" and moving (hopefully on the way out:)
Her blood work came back looking good. We are still waiting on some other tests that will determine what kind of virus she might have or if it is the flu or just the common cold. That's could be just a cold.
Something new that he told us (and I am trying to remember exactly what he said) is that children with Down syndrome have 30% less air sacs in thier lungs. So when she gets sick, she has less reserve to compensate for all the goop and mucus that settle in her lungs.
So what we do know about her is that she has some "goop" in her lungs. (yes, that was his word:) Our goal is to get it out. So he is changing up her respiratory therapy to include de-mucousing her! It is not a lot of fun for anyone, but it seems to be working. We started this new treatment and she seems much better this afternoon.
We talked about her oxygen intake being all over the board and settled on this: Whenever she gets upset and has a "procedure" done and is screaming and yelling, her oxygen needs go up for quite a while afterwards. (She was at 3 yesterday afternoon and .5 this morning after a quiet night of sleep and few procedures). When she gets upset, she is moving the mucus around and clogging more/different areas in her lungs. Our goal is to try and stay calm! (I wanted to say, yeah right!)
So we are 1) degooping 2) staying calm and rested 3) staying on top of oxygen needs. All of this should translate to a steady oxygen level and we will go to weaning from there.
We talked about her future in the cold and flu season (I did not ask about her long term needs, but will tomorrow as we begin to know more). We will develope a good lung maintenance plan and at the first sign of trouble we will see Dr. Rembecki. I probably waited too long and the goop got so far out of hand that we ended up here. That doesn't mean that we will never end up in the hospital again, but her chances would be better. He also suggested that we go "into hiding" again, to help keep her from getting sick. She has been so blessed with health, that it is easy to forget that we need to be hypervigilant with germs.
Today is going much better and we are thankful. Thank you all, for your continued prayers and well wishes. We are blessed to have all of you in her life and keeping us strong.

Friday, December 11, 2009

I finally figured out how to get these pictures uploaded! I needed to add some color to my recent posts. Here is our first room. The bed there on the right for me, was like sleeping on the hardwood floors. I spent the second night on the really skinny couch there in the back. I prayed all night not to roll off!
Aubrey wasn't sure what to make of her new bars.
Sporting her "baby legs" and enjoying some time on the floor playing. Her bracellett is called a "HUG". They have had these when my girls were first born. It is an electronic device so that if she gets too close to a certain door, it will lockdown. Same thing with the elevators. It is a safety device they give to really cute kids to keep people from stealing them:) (we did not have one when she had heart surgery and were surprised...the nurse said that usually people steal healthy babies and not ones that just had heart surgery:)

I found the play room and they had her beloved music table. I took the legs off for her and her eyse lit up when she saw it.
So this is me taking a picture in the mirror of me standing by the cribs in this place. I am 5'2" and you can see that the cribs are almost that tall. Very nice for people who are 6'5" (Woody), not so good for the short wife. The sides do go down, but still very hard to get her in and out comfortably. Notice Aubrey watching her numbers on the monitor in the back. She thinks that being able to watch "tv" in bed is sooooooooooooooooooooooo cool!
Aubrey's "Cow Baby Legs" and her feeble attempt at escape:)
This was her first big smile (Thursday night) since we had gotten here. We were eating dinner. Stroller was the best I could do for a highchair in this place.

Thanks to Courtney for the water play suggestion. Aubrey had a great time and there was water everywhere. Then the nurse told me that the "HUG" bands can't get wet. Whoops! She said that next time she would take it off and extend all of Aubrey's cords so that she could have a real bath or "normal activity".
The staff here is great and as hard as it is to be here, they are making it as easy as they can. And we appreciate that. Thank you to everyone for your prayers and well wishes. We will keep you updated.

Hospital-day 4

It has been a very busy day. I am finding the hospital internet very slow and frustrating (won't let me download pictures:( Aubrey has been sleeping very little, so time is limited for updates. This is actually the third time I have tried to update, so forgive the length.

Last night, you will recall we had her at .2 liters of oxygen. We did take her off it for a bit, but she couldn't stay above 90 and they felt that she needed to be on it. Over night, she actually went up on her intake to .7 liters. They didn't suction her nose all night, likely leading to the problem. Her iv came out last night. They were only keeping a low fluid on it, so keep it "alive" in case they needed it and to administer meds, so now her meds are all oral (not fun for me:( And if they need an iv again, they will have to stick her again.

Today, we had to keep her there and wondered what was going on. Very reminiscent of our time in the hospital last January, where her lungs took us up and down daily and we never knew what we would be doing. Her pulminologist (now Rembecki, because he is on call this weekend, but a partner of Walter) came around lunch and we had a lengthy conversation about her hospital/lung history and in the end came up with a new plan.

They are going to change her respiratory therapy. They are going to do two different nebulizer treatments, alternating every two hours for 3 treatments and then every three hours. She is also getting 2 different nose sprays.

They did and ekg and an echo that they sent over to Aubrey's cardiologist to compare with the ones that were just done in October. They want to rule out any heart involvement. They also sent some lung "goop" and nose "goop" to the lab for a look under the microscope. In the morning they will repeat some blood work and redo the RSV and flu tests.

He also ordered acidophiles to be put into her food twice a day to help her fight any infection she might have and then ordered diaper cream to be used. If any test comes back where they put her on antibiotics, she will likely get diarhea and he wanted to start protecting her tush now! (can you tell he has 5 kids--always thinking ahead)

I get the feeling that they are really puzzled that she isn't running a fever. Anyway, all the testing and changes today, made for very short naps or no naps and she spent so much time screaming and crying (those of you who know her wouldn't have known she could do that:) that she just passed out from exhaustion at 9pm. I am hoping that she will sleep through most everything tonight, since she has been, but she is not too happy with anyone coming near her and I have a feeling that if they wake her up, she will have a fit.

We are hanging in there, but are planning on being here for awhile. She is on 2 liters of oxygen right now. We aren't even thinking of weaning, just wanting to find answers for what is going on. Dr. Rembecki has theories, and is hoping to confirm them.

Thursday, December 10, 2009

Hospital-Day 3

So...there is so little to update people on, but want to let you know what little is going on.
She was on 2 liters of oxygen yesterday, but we got her down to .2 overnight. We were hoping to get her off of it today and then have a monitored (no oxygen)night to be able to go home tomorrow. However, we have been unsuccessful in our attempts to get her off and she has required a little more while sleeping. So we will continued to try and wean her.

She has been moved to a different room, just down the hall. She has a new pulse oxy monitor that is soooooooooooo sensative to her movements that she is all over the board and hard to have a good read, meaning that it keeps beeping because it thinks her stats are dropping. So that will be a little frustrating tonight. It is also not hooked up to the nursing station, so anytime she dips and needs adjusting, I will have to call to the nurses to come down. I am hoping to work some magic today and get her off the oxygen tonight.

"Super Dad" has been holding down the fort at home with the girls and stopped by today, so I could go home for a bit and take a shower. He is awsome and I am so thankful to have such a good hubby to take care of my other girls.

Kate is now running a fever and Alice and Ella are under the weather as well, so we are all looking forward to a restful weekend of healing.

We will let you know as we know more...

Thank you for your continued prayers. Pray for her to continue gaining "lung strength" so that she can be taken off the oxygen and head home.

Wednesday, December 9, 2009

Helpful Suggestions

I am looking for helpful suggestions out there to help make our stay better. I am looking for things to do with her. She had three cords, oxygen, pulse ox and iv. She can't stand up, because she has something on each foot. I really believe that she is board and she is tired of sitting on my lap to play and read. Any suggestions out there?

Wanted to thank everyone out there that has used the "Baby Legs". After so many sightings, I got Aubrey a pair for Christmas, grabbed them from under the tree yesterday and have been using them here. They are such a blessing. I just slipped them on over her iv and her pulse ox and haven't had to worry a bit about her messing with anything and they are keeping her legs warm, but allowing everyone to do their job and get at what they need. Thank you, thank you, thank you.

Hospital--Day 2

Dr. Walters (pulminologist) was here over lunch and said that she sounded much better than she had yesterday in his office. While we were talking he did a little test and completely turned off her oxygen. She dropped to 85%. The only thing keeping us here is the oxygen. Everything else we could do at home. So we will watch and wait and try to ween her off the oxygen. Hopefully we can get her down tonight and tomorrow, but she will have to spend one night here, monitored, without oxygen, before she can go home. So we are here at least two more nights, but that will depend on when she gets weened, so it could be longer. She had a fairly good night until 12 and then all the excitement of being up in the middle of the night with cool monitors to look at and beeping sounds kept us both up most of the rest of the night. They did finally bump up the oxygen to keep the beeping at bay. The other problem is her iv. They put it in her foot, which had a great vein and we thought that was a great place to keep it away from her mouth and fingers. However, every time she is able to wiggle her toes, she kinks the line and then her alarms go off. I am watching the monitor to try and prevent as much as I can, but it is hard. She is finally sleeping after just a 30 minute nap this morning. I am hoping that she can get a good long nap in here and then go to bed at her regular time and do better tonight. It is hard to entertain her all day. If I leave her to play in the crib, she tangles all her cords and rolls all over and gets all tangled. It is hard to just hold her all we are both tired. This was much easier to handle when she was smaller and not so into moving. Hopefully, I can find some things down in the play room to keep her busy this afternoon. Thank you for all of your prayers. Again we appreciate the support and I will update you as I know more. Rachel

Tuesday, December 8, 2009


This weekend Aubrey's breathing seemed labored and so we went from 1x a day breathing treatments to 3x a day to help alleviate some of her work. It just didn't seem to be helping and so this morning, I made the decision that it was time to take her in to the pulminologist. Her pulse/oxygen was in the low 80s and she sounded like the was breathing through a straw. I had done her regular breathing treatment at 9, and then immediately did one when I got there at 10. It helped loosen her up, but she was still struggling and her pulse ox was no better, so the did and EPI (epinephrine) breathing treatment. That helped her tremendously and she actually fell asleep when they did that, but her oxygen levels were still in the 80s.
So he said it was time for her to head to the hospital...
We are at Presbyterian Hospital of Plano (or Texas Health Resourses of Plano). We will be here at the least until Thursday. She is on oxygen and an iv of steroids. They did a chest xray and think that she has either "bronchitis" or "walking pneumonia". Course of treatment is the same for both. Doctor Walter will be in tomorrow morning and may have some additional information for us. Woody was here this afternoon when all the results came in. I just got back and she is resting peacefully.
Please pray that she heals quickly and that we remain patient with her and our other children. It is such a busy time of year and maybe this is God's way of saying, "Slow down and remember what is MOST important." Everything else will wait, but her health is most important right now and so we will focus back on the family and put our faith in God as the ultimate healer.
Thanks to Christy for babysitting today in a pinch:) I was so glad to not have to juggle three kids at the hospital.
I will update you as we know more. Woody is home with the big girls and I will remain at the hospital tonight. It brings back a lot of memories for us, but I feel like we are a little more calm now, since it isn't surgery and we know what all the numbers and beeps are for. But it will be more challenging since there are no grandmas or aunt here and Aubrey is likely better at pulling out ivs 10 months later:)

Saturday, December 5, 2009

Christmas in the Square

It has been a weekend of fun...cold, but fun. I know for most people 40 sounds like a day at the beach, but let me just say that last week it was 70! It has been a big jump this week and we are still adjusting to WINTER.

Friday's are always "Fun Friday". There are so many things to do during the week, that we designated Friday's as "Yes" day. They get to come home from school and play as long as they want. We usually do homemade pizza or nachos or something fun for dinner. We watch movies and eat popcorn. It is an afternoon and evening that is less hurried and simply lets them have fun. A lot of times we throw out suggestions or options and really leave it up to them to choose. Dollar Movie Theater, a Read In at school, night at the park as a family, or swimming at the pool in the summer.

Every year, Frisco does a HUMONGOUS light display in the square. All the lights are set to music and you drive around, or park like we did, and tune your radio to their station and watch the light display. So we had dinner and then the girls put on their fleece jammies and we all jumped in the car with popcorn to go watch the lights. I had forgotten the camera, but had my phone so took this one with my phone which explains the poor quality, but they were sticking their heads out the sunroof watching all the lights. We listened to all the songs at least once!
They do have some ads in the middle and they said that Santa would be coming tomorrow and they would light the big tree, so we all agreed to come back tonight. Last year, we just happened to be at the library that night. We walked out to our car just in time to see Santa parachute down to the square. Fun times. This year, there were about 100,000 MORE people there. I couldn't believe it! I absolutely hate crowds, and even more so in the cold, but we braved it since we were actually there and had promised. We were standing about 20 feet from Santa when he came out to take pictures in his sleigh. You'll notice that I didn't take a picture of our kids with Santa. I snapped this as he was sitting down, but the line was already so long, that we decided to skip it. We don't really DO Santa, but he is fun to talk about and read about, so skipping it was easy for the kids.
We did get pictures with the less popular "Frosty" and "Rudolph".
And Ebenezer Scrooge
They actually shut down the entire square to cars and had local merchants set up outside handing out tattoos and candy canes and drink coozies and stuff. So the girls had a bag full of stuff at the end.
We waited in line for the balloon artist. It took like 20 minutes for him to make 5 things because he was making really hard penguins and such. People were leaving the line it was taking so long. I tried to talk the girls into easy ones, so we could get going. Did I mention it was SOOOOOOOO COLD! And Aubrey, who had been sleeping in the stroller/carseat, was now awake and not happy that she was tucked away in the stroller. ( I forgot her hat and mittens, so not dressed to be out on such a night). So I asked the guy for "easy" choices. Ella picked a 30 second sword. Kate picked a 3 minute lady bug! Oh well. Alice really wanted the 5 minute penguin and decided to go without since she couldn't have what she wanted!
We didn't even stay for the tree lighting since we were all so cold! We high tailed it home for some hot chocolate (always served with marshmallows) and some dinner. I'm sure that every chance we get in the next few weeks we will drive by and see the light/music display and their eyes will light up over the beauty of it all. I love this time of year, when simple, twinkling lights, make them all so happy:) Even Aubrey really seemed to enjoy the lights.

Friday, December 4, 2009


So last week before Thanksgiving, me and all the girls had dentist appointments. I should have had Alice take a shot of me getting my teeth cleaned. Ella has some fear, I don't know why, so she usually has spent the last two of my cleanings laying on top of me, inches from my face, getting a good view of everything:)

In April, she rolled over and let them count her teeth and then they showed her how the tooth cleaner worked on her finger, and she got to touch the rest of the tools. So last week it was her turn to sit in the "big chair" and get them counted and cleaned. Still some fear, so I was not far, but she decided that she was going to be brave, but Aubrey should sit with her and get ready to be brave:) (Ella also thinks that Aubrey has teeth coming, but Laura the hygienist, does not confirm that suspicion!)

So here are Ella and Aubrey getting teeth cleaned and counted. Aubrey wasn't too excited about this, but tolerated it, since it was Ella:)

After you are done "being brave", you get to pick out something from "The Tooth Box". Aubrey loved standing by that thing. Ella picked a ring that says "I LOVE MY DENTIST", but she told Aubrey she couldn't pick anything until she got some teeth to be counted and cleaned!

My life is always an adventure!!! Never dull with these girls!!!

Wednesday, December 2, 2009


I know that it is supposed to be "Wordless Wednesday", but really, today just needed some words! SNOW...IN DALLAS...IN DECEMBER!!! Here is how it unfolded here at the Smith House.

Last night it was raining and chance for SNOW in the forcast. So Woody was heading out to the car this morning at 6:45 am and found this:

On the Car...
On the playset...
On Alice:)
On Kate:)
Not much, but it was coming down and the kids were excited!

An hour later, this is what it looked like:

Ella had just come down and I said, "Ella, look outside. " "Mommy, what is it?" "You know what that is!" "SNOW!" She could hardly believe it either. "Mommy, it is so beautiful and soft and fluffy!"

Aubrey says, "Oh, snow! I think I will love the snow and sledding and snowmen!"
"Wait a mean I gotta wear this big ol' sweatshirt and slippers all day! And when we go outside, I gotta wear a hat and mittens! I DON'T LIKE THE SNOW!"
It sure does help get us in the mood for Christmas though. By lunch now the snow has turned back into rain and is all melted, but it was a Winter Wonderland here in Dallas this morning:)