Good Day!

Hey guys! Do you notice anything? See my face? I don't have dots! That's right...NO OXYGEN! Also means that we are wearing real pants and not battling oxygen and the pulse/ox cord! Happy Girl!

Let me start from where we left off. She had gotten the antibiotic shot on Wednesday and was feeling much better and then got it again on Thursday and Friday. She showed minimal improvement those days, but I think that the combination of everything came together on Saturday. We always put her to bed with oxygen and then wait for her monitor to beep telling us that she has taken it off and her stats are falling. I waited and waited and waited and then finally went to check on her and she was hovering between 98 and 100...and the oxygen was off her nose! We left it and continued waiting and she slept all night! I didn't want to mention it because she often goes back and forth. And that was the end of it for her. She has slept 3 night in a row with out oxygen. We keep a tube of it as blow by in the crib just to keep giving her some extra support, but she is doing it all on her own. We are still monitoring her at night to be sure, but are so happy with her progress.

Monday they did a repeat x-ray. I usually go alone, but Ella happened to be with and had a million questions. They didn't use the tube, but just set her on the table and had a hook that holds the film, so I just held her arms up and played "SO BIG" and they took it. She didn't cry at all and was wonderful. Ella wanted a turn too, so she climbed up and got all set and I took her "picture" too!
This morning when we went to the Pulminologist's for her synagis shot, they told us that the x-ray looked much better. They cautioned that it wasn't clear and we shouldn't let up on anything, until she got a clear one which they will do in a month if she stays healthy:) We are allowed to gradually back down from 5 treatments a day to 3. She is still not over the 15lb mark, but in a way that is a good thing. The shots are measured by her weight. Once she hits 15, they will have to do two of them! So I am no longer hurrying Aubrey...I think she has been through enough to not have to add a shot anytime soon!

In other news, Saturday, we discovered that Aubrey got her FIRST TOOTH! Bottom, left in the front! It is just a tiny poke, but it is there and through! Today, I let her have a drink of water from my glass and I could hear the little "chink" that her tooth made. It was like beautiful music!

We also had therapy yesterday. I will be the first to admit that we haven't done much work on anything since she was sick, so I was curious to see how she would do with Nicole from OT. (Aubrey typically cries, because she doesn't like "hands and knees work".) She had a few fits in the beginning, but once I got a bribery snack out and Ella came to help, she did great. Ella sat on one side of the rug and put up block towers for her and we helped Aubrey crawl over and knock it down. I found that if I hold her feet, so she can't pull them forward to sit back, that worked well and I did the knees for her and she moved her arms about 4 times. This may seem little, but is huge improvement for her. I even got her to do it a couple times today.

Good days...very good days!

Baby It's COLD Outside!!!

Dallas isn't necessarily warm during the winter, but it is not usually so bitter cold. We have been under freezing now for almost 3 days. I know that it is colder and for longer in many other places, BUT we aren't used to it and it adds so much to my already busy schedule to have to bundle everyone up to leave the house, then put mittens back on because she took them off, and warm up the car and then try and get their big coats stuffed into their seatbelts. Then when you get to your destination, you have to put everyone's hats and mittens back on to walk into the place you are going and then strip them down cause the doctor's office is HOT and then lug it all around for your appointment, which lasted all of 5 minutes and then start all over again to go out to the car...

I was exhausted and we had only gone one place. I am now thankful for the weather that we frequently have and will gladly simpythize with others who are cold and lugging kids around in that weather. Feel free to call and we can complain together:)

Alice and Kate bundled up and heading off to school. When they left the wind chill was at ZERO!

This was the reading on my car at 11:00am when I left for the doctor's office. I did consult my "parent handbook" (you know, the one they give you when you have a baby:) and no where does it say, take your very sick child out in weather that is like this!

Aubrey was less than thrilled to be stuffed into a snowsuit and into her carseat to go.

And she screamed when I pulled the cover over her to protect her from the wind. It is a good thing that you can't hear pictures:)

Ella was actually excited to put everything on for a picture, but she is the one that kept taking things off, that I had to put back on so we could go.

I mean, if it is going to be this cold, we should have snow to go with it to make it pretty out at least...right? We are hoping for a warmer week to come:)

RSV

So she was feeling much better yesterday afternoon (still not well, but much better) and again this morning. As you can see from the video...this is what Aubrey sick is like:)

So we went in this morning, and she has RSV. They had done a rapid test that came back negative, but the long growth came back positive.

Medical Definition: Respiratory syncytial virus (RSV), which causes infection of the lungs and breathing passages, is a major cause of respiratory illness in young children.

In adults, it may only produce symptoms of a common cold, such as a stuffy or runny nose, sore throat, mild headache, cough, fever, and a general feeling of being ill. But in premature babies and kids with diseases that affect the lungs, heart, or immune system, RSV infections can lead to other more serious illnesses.

So they gave her another antibiotic shot (got one yesterday-which seemed to help), dose of steroids and a nebulizer of epi and xopenex. She will go back tomorrow for another antibiotic shot and will hopefully be doing much better. Dr. Rembecki said that this "usually" takes care of things...but this is Aubrey! He has done all that he can without admitting her to the hospital, so any changes in her this weekend, would mean packing our bags for the hospital. Dr. Walter is on-call this weekend and is up to speed on Aubrey (he is the one that admitted us in December).

They will repeat a chest x-ray on Monday to be sure that she is in fact getting better/healed and then we are back on Tuesday for her monthly synagis shot! I asked if we should just have a weekly standing appointment, and he just laughed, but I was totally serious!

Her weight is a little down, 14lbs 11oz, so that was just noted and will hopefully turn around here once she is feeling better and eating better.

I have been struggling to find something to be thankful for today besides our wonderful doctors and friends and family who keeps us in their prayers. I decided to be thankful that we have home oxygen right now and have been able to ride this out a little more at home and will hopefully not have to return to the hospital for any length of time! Thank you for all of your continued prayers and help and support. Especially, Woody who has been so helpful to me and has been picking up Alice and Kate from school this week, so that I could just keep Aubrey home.

Will let you know how it all turns out:)

Hearts, Hearts, Hearts

She was not really in the mood for a photo shoot, but I did take a couple pictures of her yesterday in her heart jammies and her heart sweater to mark the day. She is feeling a bit better today, so we shall see what Dr. Rembecki says at our appointment at 11am.

Heart Day...New Developments

One year ago, Aubrey had her heart surgery. I have thought of it often lately, with our recent stay and the ongoing lung issues (and today, was no different). I had grand plans for all things heart and celebrations, but Aubrey had other plans...

This morning, she was a little stuffy and working to breath, so I fed her and then did some saline drops and went on with her first nebulizer and thought that would help. It did a little, but not much so I gave her a bath and then got her dressed in her heart sweater, to mark the day. Still not better, so I followed the "short of breath" regiment on her plan. One whole vile of xopenex, if no change, .5 xopenex and 1 whole pulmicort, if still no change repeat last doses and call the office. So we did all that (4 treatments in all this morning) and then called the office when there was no change. She hasn't been using oxygen during the day at all, and I had her on almost 1 liter.

They don't see patients on Wednesdays but the nurse was there and she said that we should go to an urgent care and have them take a listen and do an x-ray and report back. I really didn't want to start over with some strange new doctor, so talked her into letting us go to the pediatricians, whose office happens to be at a hospital, where they could do the x-ray. At least he had a baseline for her since he had just seen her last week for her well visit.

So off we went, to the doctor. They are so wonderful over there and sent us right down to radiology, and kept Ella entertained in the office. It made for a little bit easier time. It is the cold and flu season, so they were busy and it took them awhile to get to us, but they did read the films fast and he had the results just as we got back up to his office.

It appears that she has some haziness in her chest again. I didn't get to see them this time to verify whether it was better or worse, but it is definitely still there. The radiologist wrote it as possible pneumonia, but they don't think it is. Looks like maybe just more "goop"! The other possibility was that the antibiotics that she is on are not strong enough, so they gave her a antibiotic boost shot and then were going to talk with the pulminologist Dr. Rembecki. Stay the course on everything and wait to hear.

I didn't even get in the door at home and they were calling! He wants to see her in the morning. Keep doing everything, but if she has fever, shortness of breath (that isn't fixable) or needs more than 1 liter of oxygen, we are to go to the ER.

So no answers today, but very reminiscent of her post surgery. Every time we thought that she was almost off oxygen, she would have a setback. It was such a roller coaster, and it feels like we are back on it, but at least we are home this time. Will let you know what we hear from him tomorrow...

Does anyone out there have any similar experience with the cold that never goes away or excessive need for oxygen? I'm all ears and eager to have some suggestions or help.

We continue to be humbly grateful for all of your prayers and support. She is a bit of a mystery to us, but the Lord knows her well and has a special plan. We turn to him and trust in him and await the good that he promises "In all things, God works for the good of those who love him"

Hymn 415

Be still, my soul; the Lord is on your side;

Bear patiently the cross of grief or pain;

Leave to your God to order and provide;

In ev'ry change he faithful will remain.

Be still, my soul; your best, your heav'nly friend

Through thorny ways leads to a joyful end.

9 Years Ago Today...

Nine years ago today, we were in Michigan...there was just enough snow on the ground to be pretty and a few flakes in the air to set the mood. He didn't have socks, but his tux was on and my dress was beautiful. Everyone was at the church and waiting...and then I married my best friend! We have surely been blessed by our Lord, these last 9 years. We didn't know then what our lives held for us, but I'm sure glad that I have had him to do it with. I couldn't have chosen a better friend, husband or father. I love you Woody. Thank you for 9 wonderful years.

Catching Up

I know that I am a little behind on things. The sleepless nights between sick kids finally caught up with me and I am just now getting over the hump with a terrible cold. By over the hump, I mean, I actually got out of my jammies today! So here is an update and Christmas recap.

The pulminologist called yesterday to confirm that her tests had come back with a bacteria and that we should continue the antibiotics and come in next week and they would do a check on her when they do her monthly synagis shot.

She is off of oxygen during the day and only needs a small bit at night. She seems to be doing better there, but now she has my terrible cough, so her appetite has decreased and her snot has increased. She took a four hour nap today which was nice, so I hope that it helps her get over this. It is getting old, doing all the nebulizer treatments and meds and I just want life to be back to "normal":) Soon...we hope...soon!

Christmas:

Looking back for some pictures to post, I realized that we really didn't take many of her. I had forgotten that she took a 4 hour nap and opened presents by herself that night and we just didn't get the camera out! I have a couple though.

I finally gave in and let Aubrey have a cut out cookie (in the spirit of the season and all--can't justify letting her have sweats if she doesn't hardly eat enough of the good stuff, but it was Christmas:)

"I can't believe this is real! She gave me a cookie!"

"I think I LOVE these things!"

And she proved to us, and her speech teacher, that she could indeed bite food, pull it away to chew and then take another bite...that food just had to be a cookie!

She also got a spoon, fork, plate, cup set for Christmas and showed us how she would use her table manners and that she was ready to feed herself.

Heading to Christmas Eve Services

The whole family by the church tree on Christmas morning

Aubrey is working on her new musical skills

Aubrey got a new book called Waddle, where you turn the pages and it looks like the objects are moving. She kept opening and closing the book and watching them move. She was really into it!

This is the field across from our house. It is pretty frequent for us to see hot air balloons out there, but not usually during the winter! He must have gone almost right over our house, because he a lot closer before we got the camera out.

This is my sick Aubrey watching TV with Ella while I showered:( You know she isn't feeling well, when she just lays on the floor at 8:00 in the morning.

Not enough energy to even lift her head to watch, but just enough to get a couple fingers on that shovel to claim it as hers and not Ella's!