Tuesday, September 30, 2008

Tube Change Successful!

The tube change was successful. Olivia didn’t like it, to say the least! It was one of those where you heard it come out, and then it was a second or two before she let out a blood-curdling scream. Not fun! I have to say the new one is much nicer though! After they changed it, we had to go to x-ray to have the placement checked to be sure it was in correctly. By that time Joe and I were really hungry and Olivia was really tired! We went to the cafeteria to eat while Olivia chilled out napping in the stroller. Check out the picture, it was so funny!

We got Olivia’s Medicalert bracelet (or anklet) in the mail on Saturday. We put it on her after her bath on Sunday morning. I thought she might not like it at first and it would take some time for her to get used to. Nope! She hasn’t minded it at all! You can kind of see it in this picture as she is partaking in her favorite activity - playing nude on the floor!

We have started to wean the steroid that Olivia has been on. She is on the first decreased dose, and steps down again on Friday. So far it seems to be going well. If everything keeps on the track it’s on she will get her final dose of that steroid on October 17. She is on the weaker steroid that they just started, but once she is off of this stronger one, they will begin to wean that weaker steroid also. If all works out Olivia should be off of regular doses of steroids by Christmas. She may still need stress doses of steroids when she is sick though.

Other big news - We quit using the apnea monitor! It was a little scary the first couple of nights, but we made it through. It is nice not having that extra piece of equipment to deal with. Dr Green wanted us to work on this over the next couple of months. Boy will he be proud when we see him on Friday! We still have it, and I don’t plan on letting them take it away just yet. Even though we don’t use it now, I think I may want to if she gets a bad cold or something. Like I said in a previous entry, it’s our security blanket! I don't know how well Dr. Green will like Olivia's new chew toy though.

Olivia will be going with my mom and I to talk to some first year med students on Thursday. Someone through St. Mary’s contacted me with this opportunity. I am really excited to share our story with these students who are just beginning to learn about prematurity. I’ve sure learned my share about it in the last 8 months! Olivia knows some days are just rough ones!

Monday, September 22, 2008

Random Update

Olivia is up to 11lbs. 12 oz, and is about 21 ½ inches long. She get about 18 ½ oz of milk per day. The amount she takes orally varies from nothing at all to almost 50%, and the rest goes through her G-tube. She is a good sleeper at night. She goes to bed around 9 and usually sleeps until about 8. She isn’t much of a napper during the day, but the catnaps are probably ok since she sleeps so long at night.

We saw the endocrinologist last Thursday. That appointment went well. They have started Olivia on another steroid, which is much weaker than the other one she is on. The hope is to slowly transition her to just the weaker one and then gradually wean that one also. For the time being though she is what is considered “Steroid Dependent”. This means that when she is ill she will get extra doses of steroids to help her body fight whatever she has. If she gets something like the stomach flu though, I will have to give her a shot of the steroid. I am a little nervous about that, to say the least, but hopefully I will never have to do that. They recommended that we order a Medicalert bracelet for Olivia, and of course I placed that order right away on Friday. It will hopefully arrive this week sometime. Olivia’s will actually be an anklet for the time being, and I ordered it in her favorite color… purple!

Olivia gets her G-tube changed on Friday. I am dreading that appointment! They won’t put her out for it; they just pull the tube out! OUCH!! I made Joe take the day off for that because I don’t think I can handle that by myself - I might cry for her! Once the take the existing one out, the others will be ones that deflate for insertion and removal – way less painful!

In other news, Olivia has started rolling over. She only does it occasionally, but YAY for her!! One of her new favorite activities is lying naked on the floor, looking at herself in the mirror, while she kicks and jabbers away! TOO CUTE!! Maybe one of these days I can figure out how to put a video of it on here!

Olivia's new favorite toy is her Oball. Every child should have one of these! They are light weight, easy to hold and catch, and best of all, they are dishwasher safe!

Mommy's two favorite animals - Olivia Bear and Pink Kitty!

Mommy's two favorite people - Olivia and Daddy!

Olivia loves to snuggle! I covered her up before she fell asleep and when I came back she had wadded up some of the blanket to cuddle with.

Monday, September 8, 2008

NICU Reunion

Yesterday we had Olivia’s NICU reunion. My parents went with us too. It was fun! It was at the Vilas Zoo in Madison, and there were many Doctors and Nurses from the NICU there. They hadn’t had a reunion like this in 10 years, and didn’t expect such a large turn out! There were over 2,000 NICU graduates and their families there! It was so nice to see many of the wonderful people who cared for our little girl, and really us too, for her first 4 months! While we were there we ran into some other people we didn’t expect to see there. My friend from high school, whose daughter spent a few days in the NICU about a year ago, was there. It was really good to see you Kellie! It had been quite a long time!! We also saw our old neighbors from out apartment. I had forgotten that their son also spent a few days in the NICU when he was born. We also saw my mom’s friend from work, Jane, whose grandson spent some time in the NICU when he was born. Check out some of the photos.

Our family photo at the reunion.

Chris was one of the nurses who came with Dr. Weinstein to pick Olivia up at Fort Atkinson Hospital the day she was born.

Don't let Olivia's face fool you, she really does like Dr. Hogden, as do her parents.

This is Olivia with Laura, the nurse who let me hold Olivia for the first time on Valentine's day.

Dr Bussey was Olivia's primary Neonatologist. We ran into her on our way out so as you can see on Olivia's face, she's pooped out!

Olivia also saw the pulmonologist on Friday. We really like Dr. Green! He said she looks good and her lungs sound good. He wants us to try to work on getting rid of the Apnea/Heart Rate Monitor – EEK! It never goes off, but it gives us a sense of security. We had already tapered back to only using it at night, but getting rid of that too, is a little scary! Her oxygen levels are good, but not good enough yet to reduce her oxygen. That will come in time though.

Dr. Green also wants Olivia to see the Endocrinologist. Olivia has been on Steroids since she was only two weeks old to help her lungs. Because the body suppresses its own natural production of steroids when it is given steroids like this, she can’t just be taken off the steroids. They will have to be very gradually tapered, and her body’s natural steroid levels will have to be monitored to be sure it picks back up and does its job creating steroids. We have that appointment next week.

What a happy girl!

Monday, September 1, 2008

Olivia's Big Week!

Olivia has had a busy couple of weeks!

She went back to the GI clinic to have her G-tube checked. They said it looks good. We don’t have to go back until it’s time to change it at the end of September.

Although we had her baptized at the hospital on the day she was born, we had a baptism ceremony at church last Sunday with her godparents. My brother Josh, his wife Teri, and Joe’s brother Jason stood up as Olivia’s godparents. Jason and his girlfriend Nicole came down from Eau Claire for baptism.

Olivia, Mommy, Daddy, and Pastor Dowling

Jason, Teri, Josh, Mommy, Daddy, and Olivia

Olivia in the same gown that Mommy and Grandma were baptized in.

On Friday we met up with our friends, Andy and Kathy that we met in the NICU. Their son Christopher was born only 9 days after Olivia. It was so good to see them and Christopher again! We hadn’t seen them since Christopher transferred hospitals in May.

Olivia and Mommy with Christopher and his Mommy

Joe started back at work last week so Olivia and I have begun our girls bonding time during the day. Contrary to Joe’s belief, that isn’t just lying on the couch, watching soap operas, and eating bon bons!

We do get out of the house a lot, although we don’t go far. We like to go out for walks. Olivia enjoys the fresh air and looking up at the trees, which we have lots of in Lake Mills. Olivia also went on her first fishing trip! We went to the local millpond one day and took my cousins fishing. (photos of this to come later)

Olivia has started receiving physical therapy and speech/feeding therapy. They each come to our house for therapy once a week. The physical therapist is working with Olivia on gross motor skills, like building muscles to help with head control and eventually rolling over. The speech/feeding therapist is working with us to help Olivia feed better from a bottle. We will experiment with different bottles, feeding positions, etc.

We have a few other important things coming up. Olivia will see the pulmonologist at the end of this week. We will also be going to the NICU reunion next weekend.

Here are a few other fun random new pictures.

We have two cats, Sweetie and Lily. Olivia is becoming a little interested in them. Lily (above) is curious about her, but Sweetie is just plain scared of her!

Still working on that thumb, even when she's all wrapped up in a towel!

OK, so Olivia wears size newborn or 0-3 month clothes, but this 2T-4T hat fit her perfectly! She does look pretty stinkin' cute in it too, I think!