What a Month

After Emily came home a couple of weeks ago off the oxygen Blair and I got excited to go and do things with out having to hall the oxygen with us.  Even thought Emily just got out we felt she was well and went to the water park.  This time is was sure easier to walk around the park and the water without having to carry an oxygen tank.  The water was on the cold side and Emily didn't like when I would try and put her in the water.  She loved cuddling with mommy when we went to the wave pool and lazy river.  She just took her pacifier and feel asleep.

To our disappointment Emily was not up to all the activity and feel sick the following Sunday.  With Emily being a big mommies girl I didn't get much sleep that night because Emily was very irritable the entire night with a low grade fever.  We went to the doctors the next day and she wasn't to concerned, yet told me to watch her fever, for if it got over 101 to let her know.  That next night she got sicker and her fever did continue to climb.  We called the doctor the next morning and with the concern of possible infection of her reservoir she readmitted us to Primary's for observation. 

Back in the hospital we found that Emily was positive for para-influenza, a tip of a flu virus. We were released the next day which was good as she started acting better except now she was throwing up.  The doctors said everything she was doing were symptoms of the virus.  It took a week and complete isolation, yet she is feeling better.  I have learned more through this to take it much slower with Emily.

With everything going on with Emily, Blair called me the day she came home from the hospital the first time to come and get him earlier.  He was blamed for too many mistakes and was let go.  With him home it has been easier to go the running around with Emily being sick.  One of the things we needed to focus on is trying to find a new place.  I would find them on the internet and then send him out to look and report back.  It worked, yet when he came back it was hard to get the specific of the place that I would think to ask.  It was nice to have him around to do the running though.

Back in the Hospital

It all started just after coming home from the NICU when Emily met with her speech for the first time.  She heard some really noising breathing that was localized in her throat.  The noises continued to be persistent, so when I took Emily to her checkup at the end of June I mentioned the noises and asked for and ENT (ears, nose and throat) referral.  She put in the referral and told me to call, yet she would also call to get Emily in sooner.  We were able to get in to see the doctor the next Monday. 

At the ENT appointment the doctor tried to look with the scope in office, yet he didn't see anything as they can't pass the vocal cords with Emily being awake.  He pushed thinks around in is schedule and got her in the beginning of July.  With everything moving so fast it scared me as to what they would find. 

We came into the hospital the afternoon of July 2.  The doctor was to do a scope and fix what he found was making her breathing noises.  We ended up waiting in pre-op for an extra two hours before they were ready to take her back.  The surgery was about and hour when the doctor can and talked to us.  He found and was able to laser a couple a good sides cysts that were  just passed her vocal cords and then he used a balloon to stretch her hair way.  They said they see these mostly because of her intubation she had when she was born.  Afterwards, Emily went to ICU with a breathing tub for swelling with the plan to take it out the next day. 

A little bit of what the doctor found

 

coming out od surgery

Recovery was a lot harder than first thought as they had to keep Emily pretty heavily sedated or she would fight the ventilator.  With her sedated her heart rate dropped into the 60 and the doctors didn't know why.  At first it scared them and they would give her stuff to bring it back up.  This was until they saw she was doing everything needed like keeping her color and good pules.  They were puzzled yet not scared as much.

It took three tries and five days later before they were able to take the tub out.  Because of all the sudation she started to have withdrawal that night I got no sleep as we tried to figure out how to best help her.  The doctors finally gave her some oxycodone and Emily was able to calm down enough to fall asleep.

Yea! no more tube

Emily was washed in the ICU for another day before being moved to the regular floor unit.  Before coming home, she still needing to get off the oxycodone and another medication that was to help the swelling.  She had a swallow study the following Monday to see if Emily could safely swallow.  She didn't pass so we came home on Tuesday on the feeding tub and will go back in 3-4 weeks to try again.  On the positive side, Emily was able to get off the oxygen.  It is amazing what giving her an airway can do.

Emily retained a lot of fluid when she was intubated. 
You can see her swallow eyes

June in Review

So June have come and gone and I can't believe we have had Emily home for a month now.  I have been nice to be home with Emily but busy working out our schedules.  Emily has started to eat better and is taking about 3 ounces by mouth every time.  She is also working on sleeping longer at night. 

We have also started to get out.  Emily took a trip to Mema's house for a few days at the beginning of June.  This trip was a little more difficult than I thought, for Emily still needed a lot of help during the day and night and it was hard to accomplish the task that my parents asked me to do.

Emily also took her first trip to the water park.  Blair's brother was in town so him and his other brother met up to go to Seven Peaks.  We got an umbrella to carry with us and it was fun taking turns as one of us sat with Emily at the bottom while to other went up to go down the slide.  Emily did really good only fusing at the end when I tried to have her play in the water.  I forgot the umbrella so I think she didn't like the sun in her face.

In other news Blair and I also celebrated our birthdays with dinner.  Nothing to big as we really like to go to the water parks all summer which will be a little more difficult with Emily this summer.

Here are some pictures from the last month:

All smiles

Emily loves sleeping on people laying on her with her arm(s)

Kicking and moving