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!