Kiefer Family Adventures

Best Appt. Ever!

2010-09-18T11:12:00.004-05:00

Olivia had her best pulmonary appointment ever yesterday! Her doctor had talked with her geneticist about her growth because he was concerned that reducing or removing her oxygen would interfere with her growth. Her geneticist thought that the only way to tell would be to try her without her oxygen for a couple of months. Her doctor and I were afraid that if we did that and then she needed to go back on it would be brutal to put her back on. So we decided that she’s doing well enough that we are going to start going to appointments every two months instead of every month. When the dietician came in she was very happy that Olivia had gained almost a pound since her appointment last month. Next came the respiratory therapist. They always check her O2 sats on her oxygen and off her oxygen. Olivia maintained 98% without oxygen for 15-20 minutes! She’s never been that high before!! The doctor stopped back in before we left and said that since her sats were that good we should turn her down from 0.3 to 0.2 and see how she does with that between now and November. YAY Olivia!

Here's some new pics of our little cutie!

Yippee! Yahoo!

2010-07-23T10:41:00.002-05:00

They sent us home this morning! Olivia had a great night. She was on slightly lower oxygen than normal, and did better than normal! They sent us home on her normal oxygen though. She already wanted to play outside when we got home this morning!

Surgery Update

2010-07-22T18:21:00.001-05:00

Surgery went really well. We are settled in our room in the PICU and Olivia is napping with Joe. She is really crabby, but is at her normal oxygen with oxygen saturations better than normal. YAY!!! I have to go now though because they just said we have to move to the hall because there is a tornado warning. We'll keep you posted!

Surgery Tomorrow

2010-07-21T17:38:00.003-05:00

Sorry it's been so long again! Olivia will be having her tonsils and adenoids removed tomorrow. She will be staying in the PICU at least one night after. We'll keep everyone posted as best we can.

Finally Updated!

2010-01-10T10:44:00.002-06:00

Sorry it’s been so long since I have posted! Olivia is doing great! She is cruising along furniture and walls, and sits very well on her own. She is more interested in food now, but still doesn’t want to swallow. We are supposed to go see a feeding therapist soon to work on that issue. She is still on the same amount of oxygen that she’s been on for over a year now. The doctor doesn’t want to wean until Olivia is gaining weight more consistently. Her numbers have been great with and without oxygen though, so that is very reassuring! Olivia had a renal ultrasound recently also. We haven’t heard the official report from her renal doctor yet, but the report we got shows that both of her kidneys have grown since last time. That is really good news since the left one had been shrinking each time she had an ultrasound in the past. We also had some blood work done for her endrocine doctor. The results from that were really good, and we will no longer have to give her stress doses of steroids! At last check Olivia’s kyphosis in her back was slightly better than it had been. It wasn’t a huge improvement, but it gives us hope that as she starts walking more, it will improve on it’s own. We still have nurses who come into our house and care for Olivia every day. It is such a huge piece of mind for us knowing that Olivia is getting the best possible care every day. Her nurses love her and she loves them! We are so fortunate to have the two wonderful nurses that we have. Enjoy a few new pictures of out cutie pie! It’s hard to believe that she will be 2 in less than a month!

My Grandma made this apron and hat for Olivia for Christmas!

Just sitting playing with her beads!

Olivia was having a tea party using her stool as a table.

This is just one of the photos we had taken recently.

Adjusting

2009-09-24T17:11:00.003-05:00

Life in the Kiefer household has been crazy with me trying to get adjusted to being back at work. I love my job and have a great group of students, but it’s still stressful trying to adjust. Olivia is doing great though! We started her on a natural remedy right around the time school started. It seems to be helping her eat and sleep better. She has been sleeping better both at night and naps. She has also started enjoying playing with food more and trying to eat some things. On top of that she has been taking a lot more from her bottle! He weight had tapered off, but seems to be picking up again now that we increased her calorie intake again.

We have two nurses that come in to care for Olivia while we’re at work. She is adjusting really well to that. She even gets sad some days when the one nurse leaves. She is crawling all over and getting into everything. She recently figured out how to climb the stairs. She is also starting to cruise along furniture. I think it’s only a matter of time before she starts walking.

Olivia really enjoyed playing with her food one night. She more in her hair than her mouth and then daddy decided to do her hair!

Look at me!

Olivia has enough hair to do ponytails now!

Olivia loves Oreos!

GROSS! Olivia has discovered the toilet, which happens to be the perfect height for her to stand at! EEW!

New Things

2009-08-08T10:04:00.005-05:00

Olivia has been a champ this week! She has been eating way more than normal, and been willing to trying new things. Yesterday was a different story though. She didn’t really want to eat at all. We are thinking that her appetite was from the steroids, and that now that we’re tapering them, she’s losing that appetite. The Erythromycin seems to be working, so hopefully in time she’ll eat more again.

Another of Olivia’s new tricks is pulling up to stand. Lately she wants to pull herself up to stand on anything possible. We had been keeping her stool upside down except when we were playing with her. She has now figured out how to flip it over so she can stand at it. She’s not cruising along anything, but I think that’s only a matter of time. Then I think we’re in big trouble!

We also found a nurse to care for Olivia when I go back to work in a few weeks. We’re hoping that we can get everything set-up before that. We just interviewed her this week, but decided right away that we really liked her. She got down on the floor with Olivia as soon as she’d introduced herself to us. Olivia is usually timid and sometimes just scared around people she isn’t familiar with, but she took right to Melissa. That was a huge plus! It definitely makes me feel more comfortable going back to school knowing that Olivia will be well cared for in her own environment!

Enjoy some new pics of the cutie pie!

Olivia's new toy at the hospital was a paper cup and a plastic spoon in a wrapper.

Sharing with her baby!

Look at that sweet face!

Food Face!

YAY!

2009-08-01T16:07:00.002-05:00

YAY! We made it home this morning! Olivia kept her oxygen saturations up all night with out increased oxygen! That was the requirement for coming home. We're all very happy to be home! Olivia has been all smiles and crawling all over since we got home.

Family Care Conference

2009-07-30T19:28:00.003-05:00

The conference went well this morning. It started off a little negative, but quickly turned positive as the doctors there realized that we weren't attacking them,but rather seeking their input combined with that of her other specialists. Dr. Pauli asked some of the same questions we'd been asking all week, but they suddenly had answers when he asked them. We were able to develop a plan to hopefully help Olivia's reflux and in turn hopefully get her to start eating more. As soon as the meeting was done we went to x-ray to have an upper GI study done to check the malrotation that they thought they saw in the same study in November. While we were there they also did a swallow study, which went really well! We haven't heard anything back from that yet. We are also starting her on Erythromycin to help with the her motility. If that works, then that's the end of the plan. If it doesn't work then we'll have a GJ tube placed. That tube will go in the same place as her G tube but it will have an extra tube on the inside that will do directly into her intestine. That will require her to be on continuous feeds from her pump at all times, a pain in the butt for us, but hopefully helpful to her. If that works then they will schedule her for a Nissen. If it doesn't work they will put a G tube back in and we'll be back at square one, and looking at other causes.

In addition to the meeting today Olivia has shown a lot of improvement. She is back down to ther normal oxygen, and they are working on decreasing the steroids that she's on. We're hoping to be able to go home tomorrow or Saturday.

Conference Scheduled!

2009-07-29T17:59:00.004-05:00

We finally got the Family Care Conference scheduled for the morning. Olivia's Pulmonologist, Geneticist, GI, Endocrinologist, Speech Therapist, and, via phone, her Primary Doctor will all be at the meeting. We are hoping that it will be a good brainstorming session and we will hopefully get a good plan to work with. There have been many ideas thrown around over the last couple of days, so hopefully at the meeting we can figure out which may be the best for Olivia.

Today was a good day for Olivia. She was put on just oxygen instead of high flow. She started the day at 2 liters and is now down to 0.5 liters. She was much more herself today. The nurse brought in a mat for her to play on the floor. She really loved that, except when we wouldn't let her crawl off of it onto the dirty floor. She was also transfered from PICU service to Pulmonary service today. We'll stay in the same room, but her care will now be managed by the pulmonary team rather than the PICU team. In addition to that, the doctor came in tonight and said that Olivia doesn't have to be on isolation anymore. That means that when the doctors and nurses come in they won't have to wear gowns and masks. Those really scare Olivia so hopefully she'll be even happier tomorrow when she can see people's faces!

Still no idea when we'll be going home, but at least we are on the right track now!

Looking a Little Better!

2009-07-27T15:33:00.000-05:00

Olivia seems to be doing a little better today. All of her cultures have been negative so far so they decided to stop the Tamaflu and one of the antibiotics. She also had a bath today, and boy did she need it! She was one stinky little girl! During her bath, she decided she didn’t want her IV anymore and pulled it right out. The good news is that they started feeds so the doctors didn’t think it was necessary to put in another IV at this point! She is so much happier now that she can use both arms! They continue to try to wean her oxygen, but haven’t made a great deal of progress thus far. The GI doctor that Olivia was supposed to see today is hopefully just going to come up to see her since her clinic is just two floors away and Olivia was her last appointment of the day. They are working on getting the Family Care Conference set up, but it probably won’t happen for a couple of days. As long as it actually happens before we go home, we’ll be happy!

Holding Course

2009-07-26T15:08:00.000-05:00

Nothing new to report here. Olivia is still on high flow at a pressure of 7 liters and 50% oxygen. If they can wean the oxygen down to about 30% and have her maintain that, then they will start to wean the pressure. They have had her oxygen down to 40% a couple of times, but then needed to increase it again. It's a SLOW process! They are treating her with two IV antibiotics, an IV steroid, tamaflu, and albuterol. That is on top of her regular medications. She is definitely not herself. She wants to be held all the time, her voice is very hoarse, and she is just generally irritable and uncomfortable. We won't hear anything about the family conference until tomorrow, when all the doctors are back from the weekend. The on-call pulmonologist said that she agreed that it was about time for a meeting to discuss these issues. She thought we had tried about everything she could think of. I will definitely post once we have more information or there are any other changes.

Really!?!

2009-07-25T00:21:00.002-05:00

Here we are again! Sitting in the PICU at the Children's hospital with pneumonia! We are getting very frustrated! It seems like each time is worse than the last! Olivia came down with a cold overnight Wednesday night, which quickly developed into pneumonia by Friday afterrnoon! We took her to see her primary doctor who advised us that it would be in our best interest to take bring Olivia here. We were kind of thinking that, but we're really glad he sent us when he did. She quickly declined on the way here and got even worse after getting here. They have her on high flow, a mix of oxygen and room air forced in at a higher pressure. The pressure on that is 7 liters. Her normal oxygen is 0.3 liters. They also have her on some IV antibiotics and steroids, in addition to an albuterol nebulizer treatment. She finally seems to be sleeping, and will hopefully sleep well for a while.

We're getting very frustrated with spending so much time here. We have been trying to get a family conference, but it's been hard because they usually only do that for inpatient. So I guess that's a good thing coming out of this, now maybe we'll finally get our family conference. We just hope that will provide some answers to finally give Olivia some relief! I think that her vomiting, not eating, and respiratory issues are all related, but we need to get her doctors together to figure things out! We'll continue to keep you posted on how she's doing!

And I promise that crawling video once we're home and feeling better!

Summer Fun!

2009-07-17T09:38:00.003-05:00

Sorry it’s been forever since I posted anything! We’ve really been enjoying our summer! We’ve celebrated both of my niece’s 2nd birthdays, went camping, went boating, and spent a lot of time with family and friends.

Olivia has been crawling all over lately. She spider crawls, on her hands and feet. It’s very cute! I am working on getting a video and promise to post it soon!

We’ve had lots of doctor appointments, mainly follow-up appointments. The most major one was with Dr. Pauli. He felt that things were going well. He is concerned about her back, but given her respiratory issues, it is impossible to brace her right now, so we’ll just have to wait. The only other concern he had was her reflux. We spent a good portion of the appointment discussing that.

Olivia is scheduled to see the GI doctor on July 27. We’re hoping to get some resolution at that point since the vomiting is now starting to damage her teeth.

Other than the vomiting, Olivia is very happy. She’s a very chatty little lady, although the only real words she says are mama and dada.

We hope everyone is enjoying your summer! We sure are!

Olivia's cousin Cora loves her!

Out boating! Olivia isn't sure what to think if it!

Cora will be such a great big sister!

Mamoo and her girls!

Chillin' with Great-Grandma Nelson!

Olivia was not a fan of the splash park!

This and That

2009-06-17T22:28:00.002-05:00

Sorry I’ve been a slacker with the updates again. We’ve been busy with graduations, end of the school year, birthdays, doctor appts, etc. We’ve been having fun though so it’s ok.

Olivia saw the nephrologist and had a renal ultrasound done. The appt with the nephrologist went well. The renal ultrasound showed that her right kidney is growing, but her left is continuing to shrink. The doctor feels it is important to do an MRA as soon as we can. However, Olivia will need sedation for it, and the doctor feels it’s not worth doing it if she will need to be intubated for it. Olivia’s pulmonologist is pretty certain that she would need to be intubated for it to be done anytime soon, so it will probably have to wait until her lungs are better.

Olivia also saw the ENT and had a repeat hearing test. Before getting her tubes the lowest she could hear was 40 decibels. At this hearing test she could hear as low as 20. They would like a kid her age to be between 5-15, but 20 is still a huge improvement. The ENT wants to follow-up with her every 6 months with repeat hearing tests at each of those appointments.

We also saw the pulmonologist. He decided that it was best not to mess with Olivia’s oxygen for right now, because of the vomiting issue we are currently battling. Otherwise he thought Olivia was doing well.

The vomiting continues to be a problem for Olivia, but is slowly getting better. The last couple of days, she has only vomited once or twice. The dietitian gave us a different formula to try. It seems to be working much better for Olivia. Hopefully that will help. Olivia also hadn’t taken anything by mouth in over a month, but on Sunday she decided to eat again! She isn’t eating as much as she had been, but at least she’s starting to try again.

We’ve also been busy with play dates. Olivia loves being around other kids! We have had of my nieces for a couple of days each. It’s been fun to have them and Olivia loves having playmates! We have also been over to our friend’s house a couple of times to play, which Olivia loves, and her kids love Olivia!

The Deerfield Festival was last weekend also. John and Tammy, the DJ’s from 96.6 Star Country who did the Radiothon for the Children’s Hospital were there on Saturday in the evening. We took Olivia over to say hello and got a couple of pictures with them. Olivia and Tammy loved cuddling together.

We plan to take Olivia camping again in a week and a half. I hope she likes it again!

When my niece Ella was here we had a play date with Aiden and Lilly. They all had such a great time together!

Olivia also had a play date with her friend Taylor while their parents did too! Taylor was still a little sleepy in this picture.

Olivia with Mamoo at El Mariachi, our favorite restaurant!

Olivia with John and Tammy from 96.3 Star Country. They are truly Champions for Kids!

Olivia and Tammy snuggling together!

Fun Times!

2009-05-31T21:59:00.003-05:00

Sorry I’ve been a slacker lately! We actually have been really busy…with fun things! YAY! We have had one of my nieces here a few days to play, play dates with friends, two short camping trips, along with our day-to-day craziness!

Since Olivia came home from the hospital on Mother’s Day, she has remained on the higher oxygen. We did an overnight pulse ox study to watch her oxygen levels while she slept. The study didn’t look horrible, but she had some pretty significant dips during the night. With that, the doctor decided that he doesn’t want to monkey with her oxygen just yet. She sees him again on June 12, so we’ll see what he has to say then.

We have also been working on switching Olivia over to a pediatric formula. It’s been a challenge to say the least. We tried one, but she started vomiting and absolutely refused to let the bottle come anywhere near her mouth. It had a strong vanilla sent, so I am sure it had a strong vanilla taste, which apparently she does not like. They have now switched her to a different, more easily digestible, flavorless pediatric formula. She is still vomiting and at this point we think it’s one of her meds because most of the vomiting comes after the feedings with which she gets her medications. No meds have been changed lately, so we’re not sure which one might be the culprit. Hopefully we can figure it out before we end up in the hospital with aspiration pneumonia again!

We have more play dates coming up that I can hopefully remember to take some pictures of. We will also be having each of my nieces over for a few days to play, which Olivia will LOVE! She really loves other kids now!

We also have quite a few doctor appts coming up in the next couple of weeks. I’ll really try not to be such a slacker anymore!

Enjoy a few new pics of our little doll!

Here's Olivia during her last hospital stay. She clearly isn't acting like anything is wrong, and definitely showing her spunk!

Olivia loves my parents' dog Molly. Molly is very old and very tolerant of Olivia and my nieces!

Olivia, her cousin Cora, and Cora's cousin Gavin all playing nicely together!

This was Olivia's idea of sleeping at 10:00 on Saturday night!

Happy Mother's Day!

2009-05-10T15:08:00.000-05:00

Happy Mother's Day! We're home! When I arrived at the hospital today, Joe was talking with the doctor. She turned to me, wished me a Happy Mother's Day, and said we could pack up and go home. Olivia came home on a little more oxygen than she was on before, but is otherwise doing really well!

To the PICU?

2009-05-08T21:57:00.001-05:00

Happy Friday! And what a beautiful day it was today! Once Joe got to the hospital I was able to get outside to read for a little while and enjoy some nice, warm fresh air. I only wish Olivia had been able to get outside and enjoy the day! Her oxygen needs have increased more again today. They continue with the breathing treatments that were started yesterday. At this point we are unsure if they are really helping or not. If they don't seem to be helping and her oxygen needs continue to increase, the plan to transfer her into the PICU. The reason for that is that they will want to put her on high flow in hopes that the higher pressure will help open the collapsed air sacs in the lungs. They aren't ready to transfer her yet, but I have a feeling that it's coming. At this point I would be surprised if we go home before Sunday. Aside from the increased oxygen need, Olivia has really been herself the past few days. She scoots around her crib, plays with her toys, interacts with the people who stop in to see, and puts up a good fight for the treatments that she doesn't care for. Continuing to see the spunk in her is a really good sign that things aren't too bad, and we hope things stay that way! We hope you all enjoy your weekend, and we'll be sure to update as we have more information!

Still Here!

2009-05-07T21:42:00.006-05:00

So...We're still here at the hospital. After Olivia's oxygen needs continued to go up and down, they decided to call pulmonary to come see her today. The doctor decided to do a chest x-ray and discovered there was a small amount of collapsing in her lung, most likely an after effect from the surgery. The have started her on a breathing treatment, and the best I can explain it is that it is sort of like a combination bi-pap and nebulizer. It delivers intermittent pressure through a mask like a bi-pap, but like a nebulizer it delivers medication and is given every 4 hours. She LOVES this treatment so much that it takes two people to hold her down to get the treatment! Whether she likes the treatment or not, it does seem to be helping. The doctor's hope is that she'll be much better and able to go home tomorrow(Friday). I am hoping the same, but am know how easily plans can change. As nice as it would be to be at home, I am much more comfortable staying here until we know she is back to her baseline and safe to take home. I will try to update sooner in the day tomorrow when I find out what the plan is. Have a great Friday! And for you locals, don't forget to listen to John and Tammy's Champions for Kids Radiothon benefiting the American Family Children's Hospital on 96.3 from 6am to 7pm on Friday.

Out of Surgery

2009-05-06T14:40:00.002-05:00

Olivia is out of surgery and recovery. We're back in the room we started in. She seems to be in better spirits than in the recovery room, but still isn't quite herself. She is on a full liter of oxygen. Her normal amount is only 0.2 liters. The nurses said that they won't send her home until she is down to her usual oxygen. If you asked me I would guess that we'll be spending the night tonight, but we'll have to wait and see what Olivia does. Part of the procedure included looking in her esophagus and airways, and also squirting some saline into her lungs and suctioning it back out to look at the cells that came out with it. The doctor said it is impossible to get all the saline out which is probably causing her to need the additional support she is requiring now. I'll be sure to keep posted what ends up happening. Have a great Wednesday!

Surgery Tomorrow

2009-05-05T17:14:00.001-05:00

We received word today that Olivia's surgery will be at 11:20 tomorrow. The procedure is supposed to last only 30 minutes or less. The plan is to send us home tomorrow evening. That will entirely depend on how Olivia is doing after surgery. The doctor told us not to be surprised if they decided to admit her for observation overnight. He said their threshold for admitting is very low and given her other issues, admission is more likely than with most kids. We will be sure to keep everyone posted on how Olivia is doing. For now enjoy some pictures of our little stinker! Her new favorite thing is crawling under the couch. The only problem with that is that she can't get out on her own. Yesterday I couldn't find her when she was whining, so I had to follow her oxygen tubing to find her one leg sticking out from under the couch! What a stinker!

Hmmmmm...What's under here?

Hide and Seek?

Peek-a-boo Mama!

Odds N Ends

2009-04-28T21:06:00.002-05:00

Olivia has had a busy couple of weeks again. Since the last post Olivia had yet another ear infection. This time the doctor decided to leave Olivia on antibiotics until her tube surgery. The surgery is scheduled for next Wednesday, May 6. Today she had the pre-op appointment, and what a lengthy appointment it was. We started at 2 in the learning center where the nurse talked to us about what to expect the day of surgery, and gave us Olivia’s earplugs that she’ll now have to wear for bath time. Then we went up to the ENT clinic where we met with the nurse practitioner who reviewed Olivia’s medications and medical history. We were then sent to the pre-anesthesia clinic where they reviewed her medical history and made sure we had no additional questions or concerns about the anesthesia. Given what I know about the complications of anesthesia for kids with achondroplasia, I normally would have asked about it. However, at our last visit to Dr. Pauli, he assured me that the anesthesiologists at the Children’s Hospital are all very educated to these issues.

Something very exciting happened while we were waiting between appointments! We met another family with a 17 month old boy named Caden, who also has achondroplasia. While his mom and I sat and talked he climbed up in my lap. It was the sweetest thing, and he is absolutely adorable! It was really nice to meet someone so close by, who sees some of the same doctors that we do.

Some additional tidbits about Olivia . . . She is finally gaining weight again! She now weighs just over 13 ½ lbs., which is up a pound from when she had her shunt surgery three weeks ago. She continues to eat well taking approximately 20% orally daily. She is scooting all over the place getting into everything she’s not supposed to. She also continues to be so happy and giggly!

OOH! These magazines are neat!

I love to read!

Matching cousins!

Easter Fun!

2009-04-15T10:02:00.003-05:00

We hope everyone had a great Easter! We had a wonderful day! We went to church with my family in the morning. Olivia only made it about half way through the service. After church we went to my grandparents’ house for Easter brunch! It was an awesome meal, as always! The Easter Bunny even made an appearance, and Olivia really enjoyed it. It was like a life-sized stuffed animal, and she enjoyed petting the fur.

Olivia seems to be much more happy and active since her surgery. She is more smiley than ever and loves to babble! She has even been eating better lately. Yesterday she took 29% from the bottle. We are hoping that will continue to get better and better.
She did have another ear infection last week, and her doctor said it was important to get the tubes in as soon as possible because the fluid in her ears is getting worse. I spoke with the ENT nurse yesterday and the surgery scheduler should be calling today to set up her surgery.

Olivia continues to do well with the lower amount of oxygen. She could probably have been turned down at the pulmonologist on Friday, but since we had just turned her oxygen down, he didn’t want to push it. As much as I would like to see the oxygen go, I don’t want to push too hard and cause a setback. They tested her oxygen levels without any oxygen again and she maintained numbers in the 90s. An improvement even from last month!

Enjoy a few pictures of our smiley little lady!

Checking out her Easter Basket!

Olivia was playing with my cousins Elizabeth, Emily and Ashley

Olivia and the Easter Bunny! She loved it!

Home again!

2009-04-05T14:25:00.004-05:00

Sorry it's been so long since I updated last. We've just been exhausted! Olivia was discharged yesterday after her feedings had improved and she had pooped a few times on her own, without a suppository. Her oxygen saturations were so good that they even turned her oxygen down to 0.2. She had been at 0.3 since October. They were going to try 0.1, but then we were able to go home. We didn't think it was a good idea to push it too much when we would bring her home without a way to measure her saturations and make sure they remained high enough.

Unbelievably, when we got home, our basement stunk like gas. We called WE energies, who then called the fire department. It was quite a scene. Fortunately, the smell went away and they didn't find any leaks.

Then this morning Olivia woke up around 6:30 with her bed and pajamas soaked in puke! UGH!!! She continued vomiting this morning. She ate this afternoon with out vomiting, so hopefully that will continue and we won't have to take her back in. Since that was the reason that they kept her in so long, it's a bit concerning that it started back up again already! I am just going to keep hoping that it was just a fluke and the vomiting won't return.

Olivia's head after surgery. You can see the horseshoe shaped incision on top and there is one other small one you can kind of see. She still has all the soap they used in the OR on her head too.

Snoozing in bed after surgery. She still has most of the ink and soap they used in the OR all over her.

Snuggling with Mommy!

A Little Better

2009-04-02T23:12:00.004-05:00

Olivia seemed to recover quite well from the surgery. They began letting her take clear liquids and later let her start taking milk. She took between eight and ten ounces within about eight hours. Far better than she usually eats! She hadn't eaten since Tuesday morning though so she was probably just very hungry!

It's been quite a long day for Miss Olivia! She hasn't taken anything orally and has been quite irritable all day. Her belly has become quite enlarged. Tonight they did a abdominal x-ray to look for problems. At this point they believe it's ileus. The way the doctor explained it was that when kids come out of surgery their brain is ready to eat so they eat a lot, but their belly isn't really ready. What then happens is that the intestines almost shut down for a short period of time, but usually start up again on their own. For the time being they have switched her back to a small amount of pedialyte, but will go back to IV fluid if she doesn't tolerate that.

The plan had been to send her home tomorrow, but that may change depending on her eating and pooping. They said that they won't send her home until her belly goes back down and she is eating and pooping regularly.

On the good side, her head looks much better. She is back to her normal amount of oxygen, and her oxygen saturations have been awesome today. Hopefully this problem with her intestines will take care of itself quickly so we can get Olivia back home where she is more comfortable.

Surgery a succcess!

2009-04-01T11:38:00.000-05:00

The neurosurgeon came in to talk to us in just under two hours after they took Olivia down to the OR. He said that normal pressure is 8-12, the upper range is 12-18. Olivia's pressure was between 25-26. They placed the shunt right away. The neurosurgeon said the shunt was already draining and within about 2 hours her pressure should be normalized. Most kids go home the day after having a shunt placed, but he said that when she will go home will depend entirely on her and her other medical problems.

Surgery Soon

2009-04-01T08:07:00.002-05:00

After a long night of Olivia being just plain inconsolable, they have decided to take her to the OR at 9 instead of noon. They never came in to tell me how her x-ray this morning looked, but said that last night's looked fine. The blood work they did last night didn't give them any information so they had planed to repeat it this morning. Because of her being so upset all night, they never re-did it. At about 4 AM they decided to give Olivia a dose of Morophine. That helped her sleep for a short time, but then she was inconsolable again so they gave her a second dose. The second dose didn't seem to help any. Since she is so obviously in pain they decided to move up the time of surgery. The plan in the OR is still the same. They will put her under and place the probe. If pressures are high right away they will just put the shunt in right away. If not, they will leave the probe in and make a decision about shunting tomorrow. I have been told that surgery could take anywhere from one hour to three or more, but I will be sure to update once she's out and back to her room.

PICU - Our home away from home!

2009-03-31T22:43:00.001-05:00

Amazingly enough, we're back at our home away from home again! After vomiting all night last night, Olivia was just not herself today. She was cranky and tired, very unusual for our happy little girl. Her fontanel was bulgy and, on and off, was pretty firm. She was also very vainey. I finally decided, against the doctors wishes, to bring her in to the ER. As usual, her breathing has worsened since we've been here, and they are thinking it's possibly pneumonia again. If tonight's blood count and CBC look good along with tomorrow morning's x-ray, then they will go ahead with the monitoring tomorrow. The plan for the pressure monitoring is to take her to the OR. If the pressure is high right off the bat then they will just put the shunt in while she's out. If not, they'll monitor the pressure for at least 24 hours before making a decision regarding the shunt. If this is pneumonia again, then that will have to be put off until she is doing better. She is certainly following the same pattern as the last two times we've been here with pneumonia, so it wouldn't be the least bit surprising if that's what it is again. I feel so bad for her because she is clearly absolutely miserable! At this point all we can do is wait and see what the tests tell us. I will try to keep everyone posted as we get new information. Thanks for keeping up with us all this time! It has certainly been a long road for little Miss Olivia! Hopefully we can get some answers soon!

I have been doing my best to keep up with all of your blogs. I haven't had the time to comment on all of them, as Miss Olivia is keeping me rather busy. I want you to know though that I have been reading them as I get a chance.

Shunt??

2009-03-30T14:21:00.000-05:00

Olivia saw the neurosurgeon today. He felt that it would be a good idea for her to have inter cranial pressure monitoring done before making a decision about a shunt. The plan is to have her go in for monitoring on Thursday. Whe have to be there at 11 and they will start the monitoring at 1. They will already have the surgery for the shunt scheduled for Friday. If she needs it, she'll be able to go in right away, and if she doesn't need it, then they'll just cancel it. Since she's supposed to have surgery for tubes also, we are hoping that if she needs the shunt they can just do the tubes at the same time. At this point the neurosurgeon felt that it was about 60/40 that she would need a shunt. We'll keep you posted as we have more information.

New Pictures

2009-03-24T19:46:00.003-05:00

So I never posted about Olivia's appointment with Dr. Pauli. Most things looked pretty good, and he felt that we were on the right track with the things we are doing. Even though she loves to lay on the floor and on her tummy, her kyphosis is getting worse. He ordered x-rays, and wants to have more done in 4 months before we see him again. He also said that it is likely that she'll eventually need a brace.

Olivia sees the neurosurgeon on Monday since he couldn't see her last Friday while she was in the hospital. We'll see then what he thinks and recommends regarding the mild hydrocephalus.

Here are some new pictures of the cutie!

Olivia loves the cats! This one tolerates her really well and even seems to like her at times.

I thought this shirt was too cute! It says "lil shorty"

"CHEESE!"

YAY! We're Home!

2009-03-20T22:47:00.002-05:00

Just wanted to let everyone know that we are home! When the nurse told Olivia she could go home, we saw the first smile we had seen since Sunday morning. I sure missed that all week! The antibiotic was the only additional medication they sent Olivia home on. The doctors want us to continue feeding her as usual, but also give her a couple of ounces of pedialyte each day until she's over this rotavirus so she doesn't get dehydrated. Olivia usually loves her baths. We decided to give her one when we got home because she really stunk. Let's just say she wasn't a fan of bath time tonight! She was in bed sleeping by 9:30 which is a huge improvement from the last time we brought her home from the hospital. That time we had a few nights of midnight or later before we got her back in her routine. I think the rotavirus is still making her feel yucky though so that's probably why she went to sleep by a decent time. We didn't get to see the neurosurgeon today because they got called in to a couple of emergency surgeries, so we'll have to follow up with them out-patient within the next couple of weeks. I will try to post some pictures of the little cutie some time soon.

Home...soon?

2009-03-20T13:32:00.000-05:00

Things seem to be improving some. It was confirmed this morning that Olivia has rotavirus. That shouldn't keep her from going home unless she doesn't tolerate her feedings. So far she seems to be tolerating them, but we'll have to see how the rest of the day goes. We also got the results from the MRI today. It showed mild hydrocephalus, which is common with achondroplasia. They did call for a neurosurgery consult today. It's not something they are terribly concerned about at this time, but if this should happen again the doctor wants to have an MRI done right away to see if that is what is causing this. It isn't ideal to have to wait for this to happen again, but at least we now have an idea of what may have been causing this. If all goes well today Olivia should be able to go home tonight, but only time will tell. I'll post more as soon as we know more.

Today's quick update

2009-03-19T15:29:00.001-05:00

Although they had switched Olivia back to milk from the pedialyte, they had to switch her back because she developed a bad case of the diarrhea. They think she may have picked up rotavirus at the hospital, as the kid next door to her has it. This means she won't be coming home today. The are going to do the MRI while she is there. They are going to do a quick scan so that she won't need to be sedated. They said they won't get as much information from this, but should get what they need. They had to remove her IV today because it started leaking and was not functioning properly anymore. Rather than starting a new one they are just going to see how she does without it. Hopefully she'll be on the mend soon and able to come home.

Still in the PICU

2009-03-18T20:57:00.001-05:00

Sorry I haven't updated in a couple of days. Olivia continues to show improvement. Today they were able to take her off high flow and put her back on just oxygen. It is still more than she is usually on at home, but it's a step in the right direction. They also started feeding Olivia today. They started with just pedialyte, but switched over to her milk tonight. These have just been tube feedings, but at least she is finally getting something in her stomach. She hadn't eaten since about 8:00 Sunday night. Shortly after starting her tube feeds, Olivia's g-tube pulled out. We aren't exactly sure how. My mom was putting her back in bed, and thinks that the tubing may have gotten stuck on the side of the bed. Funny though, the doctor who came in the room a few seconds later thought nothing of it. He said that after they transfered her to another room, they'd call GI to come take care of it. I then informed them that GI told us that if it ever came out we had a window of about 30 minutes to get it back in before the hole closed itself. We did get it taken care of relatively quickly. That added some excitement to an otherwise dull day. Since Olivia is off of high flow and eating again they wanted to transfer her to the general floor. There weren't any rooms available to for now Olivia will stay in her room in the PICU, but her care will be managed by the pulmonary team. I talked to the pulmonary doctor yesterday about doing the CT or MRI. The PICU doctors said that it would have to wait a few weeks. I told the pulmonary doctor that my preference would be to have it done before we go home. That way if she reacts poorly to the sedation we're already there. It would also mean one less trip to Madison for me. She said that would be her preference too, but we'll have to wait and see how Olivia is doing. For now, we have no idea when she'll be coming home. Could be tomorrow, or not until the weekend or after. I'll be sure to keep everyone posted!

Back in the PICU

2009-03-16T20:02:00.000-05:00

Olivia is now in the PICU again. At about 6:00 this morning they decided that Olivia would benefit from being on high flow and closer attention. So she is back on the high flow and finally began resting this afternoon. My mom came up this morning so that Joe and I could go to the Ronald McDonald house and get some sleep. We each slept a few hours there, and will probably go back for the night tonght since we are both struggling to function on this extreme lack of sleep. While the other doctors have just blown me off when I have suggested looking further into what caused this same thing again, the pulmonologist came in and told me she agreed with me. She is going to contact Olivia's geneticist and see if he has any suggestions. She thinks there is something more causing the sudden extreme vomiting which then causes the pneumonia. One idea she had was increased pressure on her brain, which can sometimes go along with achondroplasia. She doesn't typically have this additional pressure, but there could be something that causes occasional increased pressure. The pressure could cause vomiting. Since both times she's had pneumonia have been preceded by large amounts of vomiting, she is fairly certain that both were caused by Olivia aspirating some of the vomit. The pulmonologist is hoping to have some ideas as to further testing when she returns to see Olivia tomorrow. This illness means that Olivia's surgery for tubes that was scheduled for April 1 will have to be rescheduled as they prefer that she is healthy for 4-6 weeks before. I will continue to keep you posted as we get more information.

Pneumonia ... AGAIN!

2009-03-16T04:18:00.000-05:00

So I had intended on writing over the weekend about Olivia's recent visit to the geneticist. However, Sunday was another rough day for Olivia and by 10:00 we decided it was time to take her in. We were mainly worried that the vomitting and diarhea were dehydrating her. We though it was probably just a stomach bug. In the back of our minds was also the fact that this was exactly how things started before she got pneumonia last time. Sure enough...pneumonia again! They put her on IV fluids in the ER and decided to check a white cell count. Olivia's was 19, while normal is about 7-10. They then decided to do a chest x-ray. The doctor said that this one looked just like the on from the day she was admitted with pneumonia last time. We are now up in a room, with word having been given to the PICU that she may need to go there. Her breathing was fine when we came in, but seems to be getting more labored. That is really how things went last time too. I will update on the visit to the geneticist later in the week, and I will continue to keep you updated on Olivia's progress with this pneumonia. For now, I am going to attempt to get some sleep.

Medical Updates

2009-03-07T20:42:00.003-06:00

First, I would like to say thank you for all of the advice. I am working on trying out all the feeding advice. Unfortunately, Olivia likes everything in her mouth, except food! UGH! With so many of you recommending the Space Saver, I went and got one. A great deal thanks to my aunt! Before I bought ours, Olivia's speech therapist brought hers over with her to see how Olivia would fit in it. She fit so much better in it! Too bad she doesn't eat better in it too!

Olivia had several appointments this week. On Thursday, we saw the speech therapist, audiologist, and ENT. With the speech therapist we discussed Olivia’s recent pneumonia and what may have caused the aspiration. We also talked about Olivia’s eating, or lack of. Then the audiologists checked Olivia’s ears for fluid and did a hearing test. The test showed that Olivia had a small amount of fluid in both ears. That fluid was probably what caused her hearing test to show a mild hearing loss. The ENT decided that it would be a good idea to be proactive and put tubes in Olivia’s ears, since it is quite common for kids with achondroplasia to have ear problems, which can result in hearing loss. Because Olivia just had pneumonia and he wanted to wait until she was healthy for 6 weeks, the surgery won’t be until April 1. While he has her out, he also wants to take a look at her larynx, trachea, and esophagus. Hopefully Olivia can remain healthy until then, so we won’t have to postpone the surgery. Then Olivia saw her pulmonologist on Friday. He was very pleased with the overnight pulse-oximetery study we did at home last Tuesday. He said that her oxygen levels averaged about 95 for the night. Her clinic readings were about the same. He didn’t look into turning down her oxygen, probably because of her recent illness. He always tests her with out her oxygen though. She usually drops very quickly to 80 or below. This time she maintained about 86 for about 10 minutes. The doctor said the goal is to continually see that number increase each month when we are there. She seems to be doing that, so we are making progress! While we were there Olivia also got her RSV shot. One more and we will be done with those for the year! YAY!

Enjoy a few new photos!

Look at all my new teeth!

So happy and flexible!

This little stinker scooted over to the diapers and started pulling them out.

"What?"

"OOH, there's still a few toys left in here for me to toss out!"

Advice?

2009-03-02T12:14:00.002-06:00

Thank you so much for all the feeding advice! I am definitely going to try some of that out! I was wondering something else now. Olivia really doesn't sit very well in her high chair. Have any of you found a high chair with better padding for a kiddo with dwarfism, or a better way of padding on to help her sit better? The way she sits right now, she can't even really reach the tray. Any advice you have would be much appreciated!

On the Move

2009-02-27T22:10:00.003-06:00

Olivia has had quite a week. She got her first tooth on Tuesday, another on Wednesday, and has two more ready to come through! In addition to that she has started trying to crawl. Yay for me, I finally figured out how to add video! So...here is a short video of Olivia trying to get to the remote control! I didn't get the video camera until she was half way there. Sorry for the incredibly shaky video job! I will try to add some video of her talking in "Olivia language" next week, hopefully less shaky. Enjoy!

We also saw Olivia's GI doctor today. He wants us to increase the fortifier so that her feedings are higher calorie. Hopefully this will help her gain weight. She hasn't gained weight since November. Without weight gain we she can't lose the oxygen. The doctor also wants us to try to get her eating other things. We've tried oatmeal and rice cereals, bananas, pears, applesauce, peas, and sweet potatoes. She doesn't like any of them! I am totally open to any suggestions to get her to eat if anyone has any!

Finally!

2009-02-25T09:06:00.003-06:00

Olivia is back to her usual happy, smiling self these days. She has a new addition to her smile though! Yes, she finally got her first tooth yesterday! You can see in the picture I added that the two next to it look ready to pop through too. There is also one on top that looks ready to come through. Enjoy the photos!

OK, so I guess the tooth looks more like the flash glaring off her gums, but you get the idea!

Olivia loves our cats. I expected Sweetie to be afraid of her and Lily, our other cat to like her. It's quite the opposite! Sweetie comes and lays by Olivia often and is to tolerant of her!

This is what I found when I went to get Olivia from her nap! SO HAPPY!

Going Home!

2009-02-19T14:45:00.003-06:00

WE'RE GOING HOME TODAY! The doctors feel that Olivia is well enough to go home today. She is really back to her old self. She has been playing in her crib all day and has even eaten a little from a bottle. She smiled at me a couple of times too! Boy have I missed that! Hopefully we'll get more of those once we're at home! Olivia will go home on antibiotics, but no other additional medications that she wasn't already on. We met with GI, which seemed like a waste of time because they just told us to continue on the course we're on. We will meet with Olivia's regular GI doctor next week. Next post will be from home! YAY!!!

Happy Wednesday!

2009-02-18T17:44:00.001-06:00

Today has been a good and productive day for Olivia. Yesterday they discontinued her IV antibiotics, but didn't start any oral. Today the pulmonologist ordered oral antibiotics because she was afraid that she got better so quickly because of the IV antibiotics and didn't want her to have a major setback from just stopping them so suddenly. They have discontinued the steroid so she was able to have her IV removed. This made her very happy as she can now use both hands. She even played a little more today and cracked a small almost-smile. The pulmonologist is fairly certain that this was pneumonia caused by Olivia aspirating her own vomit. The vomiting is an issue that we have been raising since October, so it is nice that it is finally being addressed. A GI doctor is going to stop by tomorrow to take a look at Olivia and discuss some possibilities. There is a test that they can do that will tell them how bad her reflux really is. If it's bad enough they may consider a nissen. This would require surgery, and would make it less likely if not impossible to vomit. It is quite possible that the reflux is why Olivia isn't eating well also. They are also trying to get Olivia back on her regular feeding routine so that it is easier to transition back to home. They currently have her on 0.4 liters of oxygen. At home she is on 0.3 liters so she is almost back to where she was. YAY! As I write this Olivia is laying in her crib playing with a rattle and having a good time! What a big change from just a few days ago!

Tuesday Update

2009-02-17T19:44:00.001-06:00

So today the urinalysis came back negative. This means that there are no bacterial infections that they can find. They plan to recheck the With that, they discontinued her IV antibiotics today. They also cut Olivia's steroids in half today. She is still just getting feedings from a pump through her G-tube. Her blood pressures have been high from the steriods and being sick so they have had to give Olivia a second blood pressure medication to keep these in check. They have been trying to ween the oxygen and the flow, but Olivia hasn't been tolerating that very well. Tonight they are going to try to just decrease the flow and see how well Olivia tolerates that. One thing that has been concerning Joe and I is that Olivia's heartrate has been dipping down quite low at times. This happens mostly when she is sleeping, but has dipped as low as 58. We have asked about possibly having an echocardiogram done since her heartrate has been dipping and her blood pressure has been so high. The doctor tonight said that if her heartrate keeps dipping they may consider an EKG. We still have no idea when we'll be able to go home, but Olivia definitely seems much better today. She actually showed interest in her toys today, and played a little bit. No smiles yet, but I am sure they are coming back soon.

Good Morning

2009-02-16T11:29:00.002-06:00

Good Morning! Olivia is definitely showing signs of improvement. The cultures for RSV and influenza are showing no signs of growth, which is good. The pulmonologist was in today and said she really thinks it's pneumonia. The urine culture showed that she has a urinary tract infection. The urine sample was collected using a collection bag which the doctors agree is fairly unreliable. They put in a catheter today to get a better sample to retest for a UTI. They are going to ween her steroids further today. They started her on 10 mg four times each day. Yesterday they went to three times daily, and today went down to twice daily. They think she is retaining fluids though, so they are starting her on Lasix today, a diuretic to help her get rid of some of the fluid. As far as her breathing is concerned, they are going to keep her right at where she is for right now. She is usually on 0.3 liters of oxygen at home. They have her on a mixture that is 40% oxygen at a pressure of 4 liters today. Still no idea when Olivia will be going home, but Joe and I guess is will be at least a few more days.

Short Update

2009-02-15T20:58:00.003-06:00

Not much new to report. The were able to turn Olivia's oxygen down from 55% to 40% today and then begin reducing the pressure. She has tolerated the feedings well today so they have been able to increase her feeding rate from 6ml per hour to 18ml per hour.

Here are some pics of the poor kiddo all hooked up!

Olivia in the ER sporting the big oxygen mask and wrapped in an adult size gown.

Olivia was so hot she just wanted to sleep naked with no covers!

Snoozing with her pink blankey and nukie!

Happy Birthday Daddy!

2009-02-15T12:46:00.001-06:00

Happy Birthday Daddy!

Today Joe celebrates another birthday in the hospital with Olivia. My mom is going to come up and sit with Olivia so Joe and I can go home and get clean clothes and go out for dinner for Joe's birthday.

Olivia is doing a little better today. She is very crabby today, but I would be too if I felt that yucky! Olivia is still on the high flow, but they are trying to decrease the amount of oxygen and if she tolerates that well they will begin decreasing the pressure. They also started feeding her a small amount today. They are feeding her 6ml per hour through her G-tube. That is on a pump so it is just a very slow feed. That amounts to only one ounce every 5 hours. If she tolerates that well with out spitting up then they will gradually increase those feedings. In addition to those things they have also started chest PT with Olivia today. They have a small pink rubber circle that they use to tap on her chest to help loosen the secretions so she can hopefully cough them up. I though she would hate this, but it is in fact the opposite! That was the calmest she's been all day. She actually fell asleep while they were doing it and woke up when the stopped. We still have no idea how long we'll be here, but at least it looks like she is beginning to show signs of improvement. We'll continue to update as we have new information to share.

Happy Valentine's Day from the PICU

2009-02-14T10:45:00.000-06:00

Happy Valentine's Day from the Kiefers! Another Valentine's Day and Birthday in the hospital! UGH!

Last night they tried to put Olivia on CPAP and BiPAP, but to say she didn't like them would be an extreme understatement. It was amazing the energy she came up with to fight those things! They then decided to put her on the High Flow, which is a mixture of air and oxygen blown in at a higher pressure. They also have her on IV antibiotics and steroids, both enhaled and IV.

They don't want her eating right now for fear that she will aspirate and do more damage. She hasn't eaten since 9:30 yesterday. We think she is getting hungry from the steroids they are giving her, but better to give her time to recover before pushing the eating thing.

Her rapid RSV test came back negative, but the longer culture for RSV and other infections won't be back until after Monday. Some doctors have said it's definately pneumonia, others said it's not pneumonia but they're unsure what, and this morning the doctor said it's most likely RSV. So for now, we don't know what she has, just that she still has a fever and a hard time breathing.

Now for the PICU

2009-02-14T00:38:00.002-06:00

We have now been transfered to the PICU as Olivia's breathing was very concerning and more than the regular floor was comfortable handling. Olivia was sleeping peacefully until we got here and now is a little fussy. They plan to start her on a bipap tonight to see if that will help lessen her work of breathing. They currently have her on 1.5 liters of oxygen. That is 5 times what she is usually on at home. I will continue to post updates as we get more information. We are still awaiting results on the RSV and Flu swab.

Happy Friday the 13th from the ER

2009-02-13T19:14:00.001-06:00

Hello everyone! I waited until today to write an update thinking I would hopefully have some good news from todays pulmonologist appointment. We never made it to that appointment though. Olivia had a fever of 102.8 and was having difficulty breathing, so I brought her straight to the ER. You know it isn't good when 8-10 people rush into the room with you and they immediatly start an IV. We got here at around noon and are still sitting in the ER waiting for a room in the hospital at 7pm. Olivia has pneumonia, and will be staying until she is better. Hopefully not too long, but I want to make sure she is better before we go home. Currently they have started her on IV steroids and IV antibiotics and given her an additional inhaler. I will try to keep everything up to date as we get more information. As of right now, Olivia looks much better than when we got here so hopefully that improvement will continue.

Oh What a year!

2009-02-09T17:08:00.004-06:00

Olivia started out her life on February 7, 2008 at 2 lbs 4 oz. and 13 ½ inches long. She was on medication for low blood pressure and on a ventilator to help her breathe. Olivia was given two doses of surfactant to help her lungs. She was on IV feedings and had catheters in her cord where her feedings and blood transfusions were given and blood was drawn for tests. Over the course of the first month Olivia was given 7 blood transfusions. At four days old it was determined that Olivia had a PDA (Patent Ductus Arteriosis). That is a blood vessel in the heart that babies need in the womb, but is supposed to close itself after birth. Olivia’s didn’t close itself, and medication was given to close it. At eight days old it was determined that the PDA had closed enough that surgery wasn’t necessary. Then at 9 days old Olivia finally got her first feeding of breast milk through her OG tube. Her feedings were started at 2 ml every three hours and increased as she tolerated them. At 11 days old a PIC line was inserted so that her catheters in her cord cold be removed. That line caused her leg to swell and needed to be removed. A new line was inserted the next day and the catheters were finally removed. At two weeks old, Olivia was started on steroids to help her lungs. After a week on steroids her lungs had improved enough she was taken off the ventilator and put on CPAP. Olivia was also started on high blood pressure medications at that time. At one month old Olivia’s PIC line was removed. Shortly after that Olivia was able to try High Flow instead of CPAP for short periods of time each day. At just shy of two months Olivia had officially doubled her birth weight. Just after two months Olivia was seen by the geneticist and diagnosed with achondroplasia. Around that same time Olivia’s nasal passages became irritated and inflamed causing her to need a modified method of CPAP. They used a mask that covered her mouth and nose, and ran from the ventilator. As her nasal passages recovered she was able to transition back to high flow more often. At three months Olivia was given her own room in the NICU and at three and a half months she was able to try her first bottle. She loved it! She slowly began taking more and more of her feedings from a bottle. At four months Olivia was transferred to a different hospital so that her pulmonologist could begin managing her care. While there she transitioned well to high flow, completely off the CPAP, and eventually to a small amount of oxygen. Finally on June 25, and almost five months old, Olivia came home from the hospital. She had a home health nurse stop for a short visit twice each week, and was on nine medications. She was at that point taking about 60% of her feedings from a bottle. That number slowly declined and on July 31, Olivia had her G-Tube placed. Once Olivia was at home she began to receive birth to three services. She gets PT and Speech once each week, and will soon begin OT services as well. Olivia has made much progress over the last year. She rolls, pushes up and back, babbles a lot, and has recently started pivoting. Currently Olivia weighs 12 lbs 11 ½ oz and is about 23 inches long. She is now only on five medications, but follows up regularly with nine different doctors. What a year it has been! Olivia has been through so much and come so far!

My pregnant belly just days before Olivia was born

Tiny Olivia just a couple of days old

One of the first times Olivia was really awake

Olivia made these cards for Joe and I for Valentines day. That is my engagement ring on her hand print

Olivia's PIC line and her swollen leg from the first one that didn't work

On the CPAP

We could finally see her precious face on the high flow

On April 19 Olivia ditched the isolet and got a crib

Olivia's own room in the NICU

What a ham!

Olivia LOVES being naked!

Happy 1st Birthday Beautiful Girl!

Hip Hip Hooray!

2009-02-07T09:13:00.004-06:00

Olivia is One today!

My Dear Sweet Olivia,

Today we celebrate your First Birthday, and I am reminded that just one year ago your Daddy and I were so scared we would never be able to do this! Very unexpectedly, you came so early. Your tiny body was not yet prepared to live outside of my body. You were so tiny, so fragile! Very quickly though, your daddy and I learned just how strong you are! You fought so hard to get to where you are today!

You began your life at Fort Hospital, where the doctors and nurses had to get you out as quickly and safely as possible. The doctors and nurses there worked so hard to take good care of you. Your only weighed two pounds, four ounces. There was even a special doctor who lived near the hospital who came in to help care for you. I hope that we will always remember what they did for you and I in the early morning hours when you were born.

Within hours of your birth the doctor and nurses from St. Mary’s Hospital came to pick you up and take you to the special nursery called the NICU. It wasn’t until they were leaving with you that I finally got to see you! Then the next day I got to go to St. Mary’s so I could be near you. As soon as we got to the hospital, Grandma took me up to see you. You were so tiny, fragile, bruised, and hooked up to so many machines. I was so scared for you! If I could have taken your place, I would have in a second! You showed us just how strong you were as you improved little by little each day! After one week, I finally got to snuggle with you! It was one of the happiest moments of my life! With that one snuggle, I knew everything was going to be just fine. There were many doctors, nurses, and respiratory therapists who took such good care of you at St. Mary’s. They loved you and snuggled with you when Daddy and I couldn’t be there! I hope that as you grow we can continue to remember all they did for you in the four months you spent there.

When you were four months old, you were transferred to the American Family Children’s Hospital. The doctors, nurses, therapists, and volunteers took good care of you and challenged you. I was finally able to spend the night with you. After just three weeks, the doctors decided you were ready to come home with Daddy and I.

The day you came home was another of the happiest times of my life! Finally, we would be able to snuggle as much as we wanted, and you were able to meet the rest of you extended family. Although managing your medical needs was challenging at times, I wouldn’t have traded it for anything! At home we were able to watch you grow, learn new tricks, and get better each day.

I have loved watching your personality grow. You are truly an amazing little girl! You are our miracle! I hope you never lose the strength and strong will you have already shown us. I hope you remain as happy as you are today! I hope you always remember how proud your Daddy and I are to be the parents of such a strong, happy, and amazing little girl!

All my love,

Mommy

I promise to add pictures tomorrow!

A Good Appointment

2009-01-14T10:02:00.003-06:00

Sorry it’s been so long since I’ve posted anything! We were busy Olivia being sick with a respiratory infection, then I had the flu, plus I have a new addiction to MarioCart! A lot has happened in the last couple of weeks. Since we changed Olivia’s blood pressure medication she has virtually stopped vomiting and has started eating a little better. While she was sick and on stress doses of steroids she was taking almost 50% orally again! Since we’ve stopped the steroids her eating has decreased to about 15-20% but that’s still better than it was! Olivia saw the pulmonologist on Friday. He decided to keep her oxygen the same because she had actually lost weight since he had seen her last. We have increased her feedings again, and she seems to be gaining again. We asked our primary doctor for a referral to a different GI doctor. The one we’ve been seeing just wanted us to put Olivia on pump feedings all day! Olivia’s primary is in agreement with Joe and I that we need to work on decreasing her tube feedings and increase her oral feedings. We saw the new GI doctor last night. I was really happy with that visit. He actually recommended that we stop one of Olivia’s reflux meds because 9 out of 10 times it doesn’t actually work, and it can cause irritability and drowsiness. He wants us to monitor to see if she does better, worse, or the same with out it and make the decision whether to start it back up or continue with out it. Then he gave us a plan to try to increase her oral feedings during the day. This doctor seemed very experienced and knowledgeable, and he was in agreement that the goal should be to get her taking more orally and less in her G-tube.

It’s hard to believe that we’re already planning for Olivia’s 1st birthday! What a fast year! She’s been through so much and come so far!

Hope the new year is bringing good things to all of you!

PEEK!

Baby or Puppy?

We're working on solids more and Olivia loves playing with the spoons!

Olivia's 1st Christmas!

2008-12-29T11:31:00.001-06:00

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!

Disappointing Appointments

2008-12-12T20:24:00.002-06:00

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!

ENT Appointment

2008-12-07T20:42:00.003-06:00

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!

What are you thankful for?

2008-11-26T13:52:00.007-06:00

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!

More Feeding Help

2008-11-24T17:27:00.005-06:00

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!

Our First LPA Event

2008-11-20T17:47:00.003-06:00

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!

Feeding Update

2008-11-15T10:22:00.001-06:00

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!

Feeding Help

2008-11-13T13:28:00.002-06:00

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.

9 Months Old!

2008-11-07T13:25:00.003-06:00

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.

Halloween Fun!

2008-11-01T12:38:00.003-05:00

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"

Nine Month Check-up and I'm it!

2008-10-24T11:40:00.006-05:00

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!

Bringing down the Os

2008-10-05T15:57:00.005-05:00

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.

Tube Change Successful!

2008-09-30T10:39:00.003-05:00

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!

Random Update

2008-09-22T12:46:00.002-05:00

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.

NICU Reunion

2008-09-08T22:26:00.004-05:00

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!

Olivia's Big Week!

2008-09-01T22:16:00.005-05:00

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!

6 Month Check-Up

2008-08-16T12:03:00.007-05:00

Olivia had her six-month check-up and shots today. The appointment went really well, she is obviously behind where most 6 month olds are because of her prematurity, but I was surprised to see that she is meeting some of the 5 and 6 month milestones. That’s awesome considering that her adjusted age is only 3 months!

Olivia’s weight was 12lbs 5 oz, which was up about 1 lb from Monday (5 days ago). I think one of those weights must be off. Because of Olivia’s BPD (bronchopulmonary dysplasia) or premature lung disease, her doctors want her to be weighed at least twice a week. That has been happening between our home health nurse visits and doctor appointments, but it’s always on different scales, at different times of the day, with different amounts of clothing. How can we really get an accurate picture of her weight gain that way? Unfortunately our wonderful insurance won’t pay the $35/ month rental fee for a scale. So we bought one ourselves, so we can actually track her weight. It really was pretty ridiculous how excited I was to get this scale! I am not sure why, but I was like a kid on Christmas when we found it at our door when we got home today!

Sorry, back to the appointment. So Olivia’s height, or length, was 21 ¼ inches, which is not even on the charts for average height kiddos, but is pretty middle of the road for an achon. Her head circumference was 42 ½ cm. and I am not sure the percentile for either that or weight. I think that they were right around 50th percentile on the achon scale.

Then came the shots! Let’s just say she didn’t particularly enjoy that! Then to make matters worse, she also had to have blood drawn! The renal clinic ordered some blood tests to be done at today’s appt. She wasn’t a big fan of that either! She survived it all though and was actually back in good spirits relatively quickly.

Olivia is starting to babble a lot, and is trying really hard to become a thumb sucker. She hasn’t had much success in the thumb department yet, but she is pretty determined. I think she’s been working on that for almost a month now. It’s just a little harder for her because with her short arms there are some positions where she can’t always reach her mouth.

Olivia has also mastered the pouty face! She sucks that top lip in, and sticks that bottom lip out farther than anyone I know! You can’t help but laugh! Check it out! We got one quick picture before she started hamming it up for the camera!

Olivia also had a visit from her Grandpa Jeff last weekend. That was the first time he had seen her since March. She was still so teeny-tiny then. Olivia got to have some snuggle time and some playtime with Grandpa Jeff.

Last but not least, Olivia has made a new friend, her pink kitty blankey!

Surgery went well!

2008-08-01T21:44:00.007-05:00

YAY! We’re home! And Olivia is with us!

So here’s the longer version of how things are going. Olivia went into surgery around 8:15 on Thursday morning. By 8:45 the doctor came to meet with us. She was already changed out of her scrubs and Olivia was in the recovery room. The surgery went really well and was very quick, which is good! I was a little nervous that they would have trouble getting the scope down her because of her small passageways. They did put a breathing tube down for surgery; just because the scope takes up so much space it would have impeded her breathing. They were able to remove that tube right after surgery, before we even saw her. After surgery, Olivia was quite agitated! Who can blame her though, right?! Between the NG tube she has had in for so long and then the scope and breathing tube being put down, she was so hoarse when she cried after surgery! She slept most of the day on Thursday, which worried us that her internal clock would get totally out of whack, but she slept all night though too. She was awake for a few minutes her and there in the evening. I did manage one smile out of her during one of those times. Joe and I spent the night at Ronald McDonald House. When we got back to the hospital Olivia was acting hungry. She took some from a bottle, and then just sat in my arms and smiled at Joe and I. She has been awake most of the day, and pretty darn happy for someone who just had surgery!

Olivia hanging out in recovery while we wait for a room to be available upstairs.

For those of you who don’t know, I have decided to take a leave of absence for this school year to stay home and care for Olivia. With all of her medications, oxygen, monitors, G-tube, and high risk for illness, Joe and I decided it would be best for me to stay home with her for the school year. I will greatly miss being at school, teaching, and my co-workers, but I know I will love the time at home with my daughter!

Check out the new photos!

Help me people! My mom is messing with my hair already!

The Littlest Brewers Fan

Olivia is a pretty happy girl!

OOPS!

2008-07-29T23:18:00.001-05:00

I realized after talking to many people that I was not very clear on my last post. The surgery for Olivia’s G-tube is this Thursday (July 31), not last Thursday. Sorry for the confusion! The surgery will be at 7:30 AM at UW Hospital.

Olivia saw the cardiologist today and had a follow-up echocardiogram. The good news is that the PDA is now closed! The small hole they were watching was also closed now! Yay!! So, unless the nephrologist wants Olivia to have another echo due to her high blood pressure, we won’t have to go back to the cardiology clinic.

After the cardiologist, which was at St. Mary’s, we went up to the NICU for a visit. We got to see some of the nurses and doctors that we grew to know and love in Olivia’s four months there. It was great to seem them and nice that they got to see Olivia again getting bigger and doing well.

I promise to post an update soon after surgery, with how Olivia is doing and how the surgery went.

July 23, 2008

2008-07-23T18:13:00.002-05:00

Good Afternoon! I thought I would take a minute to update everyone on Olivia’s progress since she came home on June 25. Olivia now weighs over 11 lbs. According to the doctor appt yesterday she shrunk though. They said she is only 19 ½ inches long, but she was 20 inches at discharge. Oh well!

Olivia saw the eye doctor a couple of weeks ago. They said her eyes look good. Her retinas are mature now. They even had a way of checking her vision, which showed she has really good vision. YAY!!

Her blood pressures have continued to decrease so we’ve been able to cut one of her medications out completely and reduce the other to half the amount. YAY for that too!! We check her blood pressure daily, sometimes more than once, and her levels are remaining good. Olivia has a follow-up renal ultrasound and appointment with the nephrologists on August 8.

On Tuesday I have to take Olivia to St. Mary’s for a follow-up echocardiogram. They will be checking for signs of high blood pressure. They are also still monitoring her PDA. An echo a couple of months ago showed it was closed, but a more recent one suggested that it is still present but still very small.

We were also supposed to see the pulmonologist next week on Friday, but that appointment will be canceled. Olivia will still see the pulmonologist, but inpatient. Olivia goes in on Thursday morning for her surgery. She is going to have the G-tube put in. The surgery is scheduled for 7:30 and should only take about an hour. The procedure itself only takes about 20 minutes, but she’ll be in the OR for about an hour. Remember to keep Olivia in your thoughts and prayers!

Joe and I are really enjoying having Olivia at home with us. As much as we loved all the nurses and doctors, it’s been really nice not having to go to the hospital everyday! Hopefully this hospital stay will be much shorter than the last!

Olivia's Story

2008-07-16T15:41:00.003-05:00

On February 7, 2008 Olivia was born twelve weeks early. We had received 16 inches of snow in less than twelve hours, the plows had been called off the roads for the night, and my water broke. I was taken by ambulance to the Fort Atkinson Memorial Hospital where Olivia was delivered by emergency c-section. She weighed only 2 lbs. 4 oz., and was just 13 1/2 inches long. Olivia was transfered almost immediately to the NICU at St. Mary's Hospital in Madison. Olivia was on the ventilator for just over three weeks. She was extubated on March 1, 2008, and breathing with just the help of a CPAP. In early April, the neonatologists called Dr. Rice and Dr. Pauli for genetics consult, and on April 8, 2008 Olivia was diagnosed with Achondroplasia, the most common form of dwarfism. This explained many of the difficulties that Olivia was having. Olivia remained at St. Mary's Hospital until June 6, 2008 when she was transfered to American Family Children's Hospital, where she was seen by the pulmonary team daily. Olivia finally came home from the hospital on June 25, 2008.

Olivia looking up at Mommy!

Extubated and on the CPAP

On to the High Flow Nasal Canula