On the Move

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!

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!

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!

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

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

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

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!

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

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

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

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!

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!

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!