Monday, December 29, 2008

Olivia's 1st Christmas!

We hope everyone had a wonderful Christmas! Our first Christmas with Olivia was a busy one, but a really great one! We spent Christmas Eve at my grandparents’ house, Christmas day at my parents’ house, and had a final Christmas celebration yesterday. Olivia got completely spoiled, but she loves all the gifts she got! Olivia wasn’t entirely sure what to do with the gifts, but she did like to pull on and eat the paper.

On the medical side of things, Olivia had another disappointing appointment on the Friday before Christmas. We are trying to get an appointment for a second opinion. The GI doctor we see thought we should just put Olivia on a continuous feed from a pump all day through a tube that bypasses her stomach and goes directly into her intestines. We just don’t see how that will help. She also told us that there was no way her medications were causing her vomiting problems. We thought otherwise, as did Olivia’s primary doctor. I have since had her blood pressure medication changed. She was getting 10 ml three times daily of the med she was on. That’s an ounce a day! They switched her to a different med, and she only gets 2ml twice a day. So far, since the switch, no vomiting! (Knock on wood!!!)

Enjoy a few photos from our Christmas celebrations!

Friday, December 12, 2008

Disappointing Appointments

Olivia had a busy couple of days with appointments both yesterday and today. Yesterday we saw the Nephrologist. That appointment was rather disappointing. It began with me goofing on the appointment time. I thought the appointment was at 10:00 but it wasn’t until 10:40. At 10:30 I asked if the renal clinic was running behind, which is when they told me that Olivia’s appointment wasn’t until 10:40. I asked again later, probably around 10:50, and was told that they still had to take the 10:00 appointment back. They finally took us back for check-in at 11:00, but then back to the waiting room we went. At about 11:45 they took us to an exam room, where we waited until after 12:30 to see the doctor. The doctor then was slightly unpleasant to deal with. Olivia’s geneticist said that we need to be checking her blood pressure on her leg, because her upper arm is just too small, but the nephrologist strongly disagrees with that. She acted angry with me because the geneticist hadn’t talked to her about that. She huffed at me several times telling me she “just didn’t know what to even do with these blood pressures”, referring to the readings we’ve taken at home. By that point I was seriously aggravated and told her that this was really frustrating to me that we are being told different things by different doctors and then have to make the decision of which advice to follow. We then end up looking like the bad guys with whichever doctor’s advice we don’t follow. I told her that I wished we could have a meeting with all of Olivia’s doctors at the same time, and get some of these issues resolved! After that, she was much nicer to me and said she would look into whether there were norms for taking blood pressures on the legs for kids with achondroplasia. We have to go back for a follow-up and another renal ultrasound in June, and next week for a follow-up echocardiogram.

Today Olivia saw the pulmonologist. She was less than pleased with being back at the doctor’s office again. I had hopes of turning her oxygen down, but no such luck. Her oxygen levels were not very good. On the plus side, her numbers were good enough that we didn’t have to increase the oxygen. While there I also met with the nutritionist that works with the pulmonary team. She is awesome, and we talked for a long time about Olivia’s feeding and vomiting issues. She then talked to GI who is going to get back to me on Monday about possibly doing a pH probe study. That is where they stick a probe, about the size of the feeding tube that she used to have in her nose, up her nose and down her esophagus. It will help them to determine the severity of her reflux. This is such a concern because while she was taking almost 60% orally per day when she came home in June, she now averages about 5% orally per day. She is also vomiting, not spitting up, but vomiting. She dry heaves and turns red in the face and then projectile vomits several times each day, which is hindering her weight gain. We might not be able to solve her issues by doing the pH probe study, but it will at the very least be one more thing to rule out.

Next week Olivia will see our primary care doctor, the GI doctor, and also have the follow-up echo that I mentioned above. She’s one busy little girl these days!

Sunday, December 7, 2008

ENT Appointment

Hello All! Sorry it’s been so long since the last update! Olivia is 10 months old today!!! Can you believe it? Where has the time gone?

Olivia saw the Ear, Nose and Throat Doctor on Thursday. The speech therapist and GI doctors decided after her swallow study went well that we should see an ENT to be sure there were no structural concerns that could be interfering with her eating. The appointment went well. They put a fiber optic camera up her nose and down her throat. It only took 2 minutes 17 seconds, but seemed like 10. She screamed through the whole thing! I probably would have too. They said that structurally everything looks good. The doctor and speech therapist we saw even seemed to have a good knowledge about achondroplasia! The doctor wants to see us again in a few months just to follow up since kids with achondroplasia are predisposed to ear problems.

While we were at the hospital, we also saw the GI nurse practitioner. She walked me through changing Olivia’s tube. Boy am I glad I didn’t try that one at home alone!!! I did it though and hopefully each time it will get a little easier. Thankfully, Marcy said that we can continue to bring Olivia there to change it until we are comfortable.

Olivia has a follow up appointment with the renal clinic this week. They will check up on her blood pressure and probably do some lab work. She also has an appointment to get her next RSV shot and see the pulmonologist. Her weight gain has been good this month so keep your fingers crossed that we can bring the oxygen down a little more!

We are continuing to work on the feeding issues. Some days look like we’re making huge improvements, and others, well, not so much. We will just keep plugging along and we’ll get there someday!

Meanwhile, we are getting ready for Christmas in the Kiefer house. We have our tree up and decorated. We get our tree from up north where Joe is from every year. Actually we buy it from Joe’s kindergarten teacher. Most of our gifts are bought, wrapped and under the tree. I am so excited for Christmas this year.

Enjoy a couple of random photos!

"What? I didn't do anything!"
(Notice her oxygen cannula hanging there) Olivia's new trick is pulling her cannula right out of the sticky circles that hold it in place.

Sleeping in her car seat. How cute is this new hat?!

Sitting in the chair like a big girl!

Looking cool in her hat and shades!

Wednesday, November 26, 2008

What are you thankful for?

Here are a few things I am thankful for this Thanksgiving:

-An amazing little girl who makes my heart smile!

-My supportive husband who is a great father.

-Wonderful Family and Friends. This year has not always been easy on us, but we’ve had more support than we could ever have imagined.

-All the nurses, doctors, and other staff who have helped us along our journey over the last year and continue to help us today and in the future.

-All of you who have become another extended family. I love reading your stories, and hearing your comments about ours!

I hope you all have a great Thanksgiving!

Monday, November 24, 2008

More Feeding Help

We love our primary care doctor! He listened to our concerns about Olivia’s feeding issues and took them seriously! Thank you! He agreed with me that it is a concern and we should be working on trying to get her eating and not relying so much on her g-tube. Although neither he nor I wanted to start her on another medication, we decided that it would be good to try a medication to get her intestinal tract moving. We started this medication on Friday. She did actually act hungry a few times yesterday and today. It seems to be helping (knock on wood!).

This weekend Olivia and I stayed at my parents’ house while Joe was up north hunting. While we were there we went and had photos done with Olivia and my two nieces. It was kind of a fiasco, but really cute.

This is my mom with her three granddaughters!

Thursday, November 20, 2008

Our First LPA Event

We attended our first LPA event on Sunday! It was really fun and great to talk with other adults and kids with dwarfism. There weren’t as many people there as we had expected, but that may have been for the better. We were able to talk to almost everyone. We met some really great people, and had some really great conversations. Maybe most importantly we saw our friend Connie and met some of her family. Connie works in the NICU at St. Mary’s, where Olivia spent her first four months of life. I think Olivia remembered Connie too. She smiled a lot for her and was totally comfortable when Connie held her! I didn’t get many pictures that day, but here's a couple.

Olivia with Connie. She loves touching faces these days!

Just a quick family shot!

Saturday, November 15, 2008

Feeding Update

So I can’t say we really got any news yesterday. The swallow study and upper GI went OK. Olivia wasn’t a huge fan of the barium, but we were able to get a few swallows in her to see that she can swallow fine. They then put some of the barium directly into her G-tube to watch it travel through her stomach to her intestines. She puked it up a couple of times, but other than that it looked fine. The doctor said there was nothing to be worried about at this point. From there the speech therapist said that we just shouldn’t push the bottle. If she doesn’t want it just tube feed her so that bottle-feeding doesn’t become a bad experience for her. She also said that if she likes eating the baby foods to continue introducing those and let her eat as much of those as she wants. I had already set-up an appointment to see the feeding clinic at the Waisman Centerin December. That is where Dr. Pauli works also. This would be a team of people including a pediatrician, speech therapist, nutritionist, and possibly some others. I plan to keep this appointment because I would like to get some more opinions.

We also saw Olivia’s Pulmonologist. That appointment wasn’t bad, it just didn’t go as well as I had expected. I thought he would be really impressed with her breathing, and we would be able to turn her oxygen down more. Her breathing sounded good, and her saturations were good all the way down to 0.1 again, but we weren’t able to turn down her oxygen. He was concerned because her weight gain was not as much as they would like to see. Let me just vent about that!! There are several nutritionists who are supposed to be working with us, but they all just assumed that the others were. We didn’t know this so we haven’t had a nutritionist working with us. We’ve had to be just guessing at how we should be increasing feedings, but then Olivia started spitting up more again. It took about 5 calls to the GI doctor to get any answers as to what we should do with her feedings! So…If we had been given the guidance we were supposed to be, she probably would have gained the weight! UGH!

Anyway, it ended up being a really long day for all of us! We were at the hospital for about 4 hours, which seemed like about 10! In addition to the swallow study and upper GI, Olivia had to get a flu shot and RSV shot. Poor Kiddo! She handled it like a champ though, and then slept until 9:30 this morning! Which Joe and I greatly appreciated!

Have a great weekend everyone! Tomorrow we will be going to our first LPA event! I am super excited!

Thursday, November 13, 2008

Feeding Help

Good news! This morning I received a phone call from Lori, the speech and feeding therapist who Olivia saw when she was in the PICU at UW. She saw the request from Dr. Erickson, Olivia’s GI doctor, to do the swallow study and upper GI study, and that it wasn’t scheduled until Dec. 10. She called because she had the availability to do it tomorrow, and thought it would be good to get it done sooner. So…Olivia has an appointment at 1 to have the swallow study done. They will feed her barium with her sitting next to a live x-ray machine. They can then watch her swallow the barium and watch it travel down her esophagus, through her stomach and though her intestines. This will tell them if there are any underlying medical issues that would be causing her to not want to eat. The speech therapist will be watching the whole thing too. This will be good because Lori saw her eating when she was eating the very best, so she will be able to tell if there are differences in her eating now.

Olivia will also see Dr. Green, her pulmonologist tomorrow. That appointment is at 1:30, but luckily in the same place as the swallow study. Olivia will get her flu shot booster and her first RSV shot. It would be nice if we could turn her oxygen down a little too!

Because the appointments are so close together we will have the swallow study done, go to the appointment with Dr. Green and then go back to talk about the swallow study with Lori. Hopefully we’ll get some good suggestions that will help get Olivia’s feeding back on track! I will update sometime this weekend on how the appointments go.

Friday, November 7, 2008

9 Months Old!

WOW, Can you believe Olivia is 9 MONTHS already?! It sure has been 9 months of ups and downs, but worth every second!

I already posted about Olivia’s 9-month check-up, but we saw her Geneticist, Dr. Pauli, on Wednesday. The appointment went really well. Dr. Pauli was really impressed with how well Olivia is doing. He said he didn’t really have any concerns about her at this time. We’ll see him again in about 4 months.

We are working on pursuing a feeding team consult for Olivia. None of Olivia’s doctors have suggested such a thing. It’s frustrating to me that none of them seem to be concerned that most days Olivia takes 25% or less of her total feedings orally. By this point I would think that would be a bit concerning. I am pushing for further investigation of this because I know that Olivia CAN do it. The question is why isn’t she? Hopefully we’ll get some answers!!

We also got Olivia’s 9 month pictures taken and some family photos as well. Here are some of the rough copies, without cropping or retouching.

Saturday, November 1, 2008

Halloween Fun!

Hope everyone had a great Halloween! Here are some pictures from ours:

We played in the leaves during the day with my niece Cora!

My niece Ella handed out candy from her rocking chair. She enjoyed a little while she worked!

This gives a whole new meaning to "Cute as a Bug"

Friday, October 24, 2008

Nine Month Check-up and I'm it!

Sorry that I’ve been such a slacker with the updates lately! Now I’ll bombard you with tons of info though!

Little Miss Olivia is now officially a member of Little People of America! Joe and I felt it was important to join for her sake and ours. This will give her the opportunity to interact with other little people as she grows up so she hopefully won’t feel so different. It will also give Joe and I an opportunity to interact with other little people and their families. Because there are so many issues that can go along with dwarfism, we feel that it is critical to keep ourselves involved and educated so that we can be the best parents we can for Olivia.

Olivia is officially off of the prednisolone. That is the steroid she has been on to help her lungs since long before she came home from the hospital. She seems to be doing well without that. The next step is to begin weaning the cortef. That is the new steroid she was started on to help things go more smoothly while weaning the prednisolone. The endocrinologist was on vacation this week, but next week she will devise a plan for us to begin weaning the cortef. Then Olivia will be steroid free for the first time since she was two weeks old. We will still have to keep some steroids on hand to give her if she gets sick.

We went for Olivia’s nine-month check-up today. Dr. Keil said that Olivia looks great, especially considering her rough start. Her lungs still sound good and clear! She weighed a whopping 12 lbs 4 oz and was 22 inches long. That’s 10 lbs heavier and 9 inches longer than when she was born!

Olivia has started rolling over now. She scared me one day when she rolled and her head banged on the floor. She laughed about it though! What a tough little cookie!!!

She is still not a huge fan of cereal. We have tried oatmeal, rice with pears, and plain bananas. She just does not like it! She watches me eat and starts smacking her lips every time I take a bite, but doesn’t want anything I have offered her. I guess she’s just holding out for the good stuff!

I promise it won’t be so long before I post again!

Olivia love sitting in her tumble form chair and playing with this toy!

Her favorite toy is her tube though!

Olivia seems to really like books and being read to lately!

Olivia loves the cats! Lily tolerates her really well!

Look at me, holding my head up all by myself!

Look at that beautiful smiling face! No she didn't lose the oxygen yet, I just took the picture while I was changing out her cannula and the spots that hold it in place.

I was also tagged by Jennifer, so here goes:

10 Years ago I:

1. Was in the beginning of my freshman year at UW-Whitewater
2. Just started working at Wal-Mart
3. Drove a 1988 Delta 88
4. Living in the dorms
5. Are you kidding I don't remember that far back!!!

5 Things on Today's To-Do list:

1. Call the insurance company with questions about coverage for Olivia's geneticist visit
2. Make snack mix for tomorrow night
3. Learn how to use my sewing machine to shorten some of Olivia's clothes
4. Make a list of things to go over with the baby sitter tomorrow before we leave
5. Play with my favorite kid in the whole wide world!!

5 Things I Would do if I was a Millionaire:

1. Have my brother build me a new house
2. Pay off my car and buy a second car for us
3. Ensure Olivia's future (ie: lifetime member of LPA, college fund, etc)
4. Travel
5. Help loved ones

5 Places I've lived:

1. Deerfield, WI
2. Marshall, WI
3. Whitewater, WI
4. Lake Mills, WI
5. It's OK Kim, I've only lived four places too!

5 Jobs I've had:

1. Hostess, Busser, and Cook at Pizza Hut
2. Teacher Aide at Little Family Daycare
3. Multiple positions from cashier to support manager at Wal-Mart
4. Teacher at Lake Mills Schools
5. Hostess at Tru Tavern and Grill

I'll tag whoever hasn't been already. I think Cat has escaped all this tagging so far! I am also going to tag my sister in law, Teri. She's been thinking about creating a blog, so maybe this will motivate her!

Sunday, October 5, 2008

Bringing down the Os

Olivia saw the pulmonologist on Friday. He was really impressed with how well she was doing. Her oxygen levels were really good, so he decided to try turning down her oxygen. She was at 0.4 liters per minute and we have decreased it to 0.3. Not a huge change, but it’s a step in the right direction. If her numbers are as good next time he said we’d take another step down. I much prefer these baby steps to drastic changes anyway! She also got her first flu shot. When we go back next month she’ll get a flu shot booster and her first RSV shot.

Olivia also tried cereal for the first time last week. She wasn’t a huge fan, but she didn’t hate it either. We’ll keep working on that with her. Hopefully she’ll grow to like it. The photo is before the messy cereal face.

Talking with the med. students went really well. They had some good questions. Olivia behaved really well through the whole thing, except pulling her cannula into her mouth a couple of times. I hope they invite us back to do it again next year.

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!