"UNBELIEVABLE"

It's really nice when a doctor's first word is unbelievable. That's what one of Brooke's NICU doctor's said when he first saw her. She was standing so nicely in the waiting room "talking" to her old nurses, therapists etc... It's so nice to hear people tell you how good she looks.

We saw Brooke's Pulmonary doctor (and team) on Tuesday and everyone seemed pretty impressed with her. They asked lots of questions, checked her equipment etc... and we came up with a plan. Before I tell you the plan, here is an idea of how far she has come. It's pretty complicated, but I will try to keep things simple. I had no clue what any of this stuff was before Brookie.

These are Brooke's settings on her vent:
Red = what she came home at
Blue = where she is now
Green = Goal

Number of Breaths the machine gives her: 28 4 0 (This will happen when I get back from Florida. I am just too chicken to do too much before I leave.)

Pressure Control (amount of pressure from a vent breath): The vent breaths have been the big breaths. Think about when you inhale and draw in a nice big breath. Brooke always took pretty shallow breaths because her muscles were too weak for her to fully inhale. 35 29 0
The zero will become zero when I take away her vent breaths.

Pressure Support (amount of pressure for all of Brooke's spontaneous breaths): 30 21 12
When Brooke's breath number goes to zero, she will be doing all of the breathing on her own with the pressure support (think CPAP). She is now able to take bigger spontaneous breaths than vent breaths!

PEEP (amount of pressure left in Brooke's lungs after she exhales) 8 8 6

Here is our goal for wean:

About a week after taking the breaths away, I will lower the PEEP to 7. She will then stay at these settings for a while (maybe a month). If she seems comfortable with that we will start to lower the pressure support to 12. When that is done, the last thing to lower will be the PEEP to 6. She will again hang out there for a while. If she is still doing well and seems comfortable with all of the changes, we will begin trying trach trials. A trach trial means taking Brooke off the vent completely for short periods of time during the day. We will probably start with 30 minutes a day 2 times a week and go from there. Our goal is to have her off the vent all day.

Are you still with me? I know that's a lot of information to soak in, but I wanted you to know just how far she has come and where we are going.

She has really gotten good at crawling away from the vent. EXAMPLE: I was putting toys at the front door the night before we went to St. Louis. She wanted what I was putting out so she unplugged herself, looked at me and made a mad dash for the toys. It's pretty funny. I don't know how many times in a day I have to plug her back in. Her doctor even said that sometimes the kids are the one's that let us know they are ready to be weaned from the vent.

I will post some pictures of the girls later. Have a great weekend!

Where are you going?

That has been the question of the week this week. Brooke is into EVERYTHING and going EVERYWHERE! It's really hard to keep her plugged in to her vent and she doesn't really seem to care. She will unplug herself and keep crawling to what she wants. She has played with things she has never seen before and really seems to enjoy herself. A few new things she loves --- the printer, the basket we have at the front door holding gloves, scarves, hats etc..., the door to the entertainment center. I think she sat behind the door for 30 minutes opening and closing it.

Here are two videos. I'm sorry I didn't post them sooner but I've been busy chasing Brooke around. We just keep saying that we are glad we have to chase her around because that means she's getting stronger as she becomes more mobile.

The first one is her crawling. The second is her "walking" in the driveway. Her physical therapist, Sue is letting us borrow this walker so Brooke can practice walking. She is getting pretty good at it. Neither video is very long, but you get the picture.

On Tuesday, Brian and I had an appointment with the specialist at Maternal Fetal Medicine at St. John's. They did a very thorough sonogram of the baby and my fluid level. Again, things look good so far. They want to see me each month for a sonogram where they will closely watch my fluid.

Other than that, we have had a pretty uneventful week. I don't even have many pictures to post.

I did take the girls to the mall last Friday. Hadley was home from day care and we were bored so we went to the mall to ride the carousel. It was a good time and Brooke was very good. It really isn't so tough going out. Brooke has even gone with me to Hobby Lobby and Bed, Bath and Beyond and looking for flowers. She really likes riding in carts.

Here is a picture of our bedroom. It's not totally done--I still have a few pictures to hang, but it's getting close.

Hard at work at the computer!

I don't have picture of Hadley but here are a few quotes from her...

1. We were running errands the other day (nothing fancy -- Menards and Wal-Mart, I think). Anyway, we were driving along just talking and she blurts out "Mom, I didn't put any make-up on!" What?!? For those of you that know me know that I am not a big girly girl and I don't put make-up on every time I leave the house. I don't know where that came from.

2. Another errand day found us driving by Knight's Action Park. We were checking to see if the water was running yet and Hadley asked when we were going to go there. I told her it would be soon. She then asked if Brooke was going to come. I said we would probably wait until Brooke was off the vent to try going to a water park. She was so serious when she said "Can't we just take the dry vent?" (which is the vent we take when we leave the house). She is such a sweet sister.

3. While waiting to have our sonogram done, she started rubbing her belly and told someone she was there to have the "baby in her belly checked out." Oh Boy!!!

4. While sitting in church eating the fruit snacks I brought to try to keep her quiet...she looks in my purse and asks what else I brought for her. She asks, "Did you bring me something to drink?" When I said no, she told me it was ok because "we can run home and get something. Daddy will wait for us."

Have a great long weekend!

Brooke is Crawling!

That's right, Brookie is crawling (and she's pretty good at it, too). She took her first cruise on Tuesday and she loves her new mobility. We find ourselves following her around with her vent and stopping and going as much as she wants. She likes exploring different parts of the house now. She is also getting really good at stepping too. She's been standing really well for a while but hadn't really shown much interest in walking. Just in the last week or so she has gotten pretty good at initiating steps without much help. She is officially on the move!







Here is a picture of Hadley in her winter pajamas. It was 67 degrees outside and she had a cute little skirt and shirt on. I walked by her room and she is digging through her pajama drawer searching for something to wear because "she was 'berry' cold." Notice the skirt hanging out from the pajamas. She ended up keeping them on for most of the day. Oh my goodness, she wears me out!

As I have mentioned before, we are doing some home improvement projects here on Oak Street. We had new front and back doors installed on Thursday. Long story short, it was not an easy job. The contractor had to cut the old holes (where the old doors were) to make room for the new doors. We came home to dust everywhere! On Saturday, I gave Hadley a bucket of soapy water and put her to work washing toys. She loved this and worked really well for a while. These next few pictures show you what happens when a two year old with a bucket of water gets bored.

Here is a picture of my Mother's Day present. I picked out a new shower curtain and accessories. Our bathroom has looked the same since we moved in and it was time for a change. Brian also finished painting our bedroom. I will post a picture of that next week when everything gets put back together.

We also found out that both of the cribs we own were recalled. We had to call the company who sent us a kit to take them apart and an envelope to return the hardware in. We will receive two vouchers to purchase two new beds in the next month. I'm kind of excited because the one we used for Hadley (which will be the new baby's) was pretty scratched up. I think Hadley liked to use it as a teething toy.

I do have a video of Brookie crawling but I can't find it right now! I have no idea where it went. It's lost somewhere on my computer. I will keep searching, but if I can't find it, I will post a new one as soon as I can.

Here is one of Hadley and Brooke "cleaning". I guess Hadley is more the cleaner and Brooke the cleanee in this one.

This video is of our little performer. She loves to make up songs and won't let us turn on music for her to sing to. She just sings from the heart. Enjoy her "song."

I hope everyone had a Happy Mother's Day. I will post that video of Brookie ASAP. Have a super week!

Watch Out, Brian!

Well, we had our 20 week sonogram on Thursday. The sonogram lady (I don't know their official term) did a very thorough check of all the organs, face, legs, arms, etc... and so far, everything looks great with the baby.

And...much to my surprise, we found out we are having another GIRL! #3!!! I really was shocked. I was sure it was a boy because I had felt so different this time around. I was pretty sick in the beginning, had horrible headaches and just felt plain crappy which I didn't really have with either of the girls.

We truly didn't care one way or the other, we are just glad that everything looks good so far. I will start going to the specialist probably in the next few weeks.

I do have pictures from this week to post, but I am going to have to do that later because Brooke has decided she doesn't need full naps anymore and is staring at me while I type.