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

Time is Flying

Where has my time been going.  I have been a slacker these last two months and I apologize.  To cash people up on our lives from the last three weeks.

First, right before mothers day we had the doctors suggested that Emily needed a G-tub before coming home.  This is because she was only taking about 15% of her food by mouth.  We really not sure we wanted this for her, yet we wanted her to come home more.  We felt like we were backed into a corner and surgery was scheduled.  The Lord was looking out for us and the doctors had a bunch of emergency surgeries and Emily's was cancelled.  Which turned out to be the best thing for her as right after the let her start to eat again is started to take about 85-90% of her food by mouth.  With the improvement the doctors started getting Blair and I excited about coming home by the end of the week, Emily just had to pass her eye exam and for the eye doctor would release her on 100% oxygen.  Just like our Emily she will do things on her time.

While the eye doctor didn't give his approval and we spend mothers day in the hospital.  Yet on this day the doctor over ruled the other as she would be on such a low flow of 100% is would be ok.  This meant we were back on to making plans to bring Emily home on Thursday.  We were excited.  We did our final teaching and Emily had a few screenings and test to pass.  One of the we her car seat test.  She tried three time that Sunday and freaked out so much that her heart rate jumped and failed the test.  The following day the nurse waited until she was asleep and passed with flying colors.  Now when ever she is in the car she falls asleep with no problem.

First time in the car seat-
she lasted about 5-10 minutes before screaming

We then made plans to stay the night Wednesday to learn had to care for Emily on our own.  That night was the worse night ever trying to work both hospital and home machines.  We made it through the night and was discharged the following afternoon with all our follow-up appointments made.  Needless too say Emily has more people following her and at discharge it was hard to keep track of what doctor was what and what they were their for.  We made it and all was good.

All strapped in ready to go home!!!

In the car at last

The weeks following were busy in trying to get into a routine.  I still had to finish work the next week and my mom was nice to come and watch Emily for me to go to my preschool children's last day of school.  Then the next two days, I got permission to take Emily to work with me in order to clean up and be signed out for the summer. 

Emily has been doing great at home.  It has been nice to have Emily home for us to be parents.  The first thing we decided was to not us the feeding tube some of her therapy thinks she still needs it. We are still working on her sleeping longer at night but I an told that it will come.  I am glade I don't have to work though through these late nights it is nice to sleep in and sometimes take a nap during the day.

Play time at home

Tuckered out from her first walk in the park

Exhaustion and Sickness

I am sorry that I have not up dated in the last three weeks.  I believe that last two to three months started to catch with both Blair and I.  The week of the 20th Blair was hit really bad with allergies and a small cold.  He took some time to rest in the middle of the week and that seemed to do the trick and he we back on his feet the next day. 

Daddy sleeping with Emily

I was not so lucky.  I fell sick the next week.  Completely exhausted and still having to go to work my cold lasted the entire week.  The down side to this is not getting to see Emily.  Yet I was able to try and get the sleep I needed to recover and by the end of the week I was feeling much better.  My voice was back and I had most of my energy back. 

Blair brought this picture back one day I was sick at home. 
I made this outfit years ago when I was still in school.

I couldn't have felt better just in time as doctors started talking about Emily needing a G-tub.  (and opening that puts food directly into her stomach though her tummy).  They thought it would be the best thing for her to come home on as she as only taking about 15% of her food by mouth.  As it turned out last Friday the doctors got hit with a lot of emergency surgeries which pushed Emily back.  We see this as a blessing know as right after she was given back her food (going without for 6 hour in prep for surgery) she ate every bit.  It amazed doctors for they never seen someone turn around so fast that the surgeon had to come in a few days later to take a picture of Emily eating.  She still has her times of being tired yet she is now taking about 80%-90% of her food by mouth.  Just leave it to my girl to do things when she is good and ready.  With her eating out of the way now doctors started to have the talk of being able to come home soon.

Emily loves bath time!
You would never know
she was screaming 2 seconds before this.

Emily's Fashion Week

This week started with Emily going into isolation with her fist cold virus.  She tested positive for coronavirus last Saturday, yet we have been blessed that she didn't present with any symptoms except for a little more congestion in her nose.  She actually through the week went down in her oxygen support instead of up like you would expect. 

Blair and I have also enjoyed taking clothes up that others have given up for Emily to wear.  We weren't going to take any of out stuff at first in fear they would get lost in the hospital laundry.  Then seeing how mush she is growing I figured we needing to start taking our clothes else they would not fit her anymore by the time she came home.  We have love dressing her up in the evening and them taking a picture of how cute she is.   Then to prevent then from getting lost we have a laundry bag by her bed to put the dirty clothes in for me to bring home to wash instead of them going to the hospital's laundry. So fare this have worked we hope it will continue to work for us.

Here is a glimpse of Emily's First Fashion Week...

 

What outfit do you think she looks the cutes in?

Busy Week

First I need to make a correction from last week.  I told everyone that she was 4.7lb, yet with me still learning how to convert I made a mistaken and she was really about 5.0lb.  This week I download a conversion app which makes it easier, and so she has continued to grow this week and is about  5.3lb now.

We have had a really busy week.  First, Blair's work schedule change so we have been trying to figure how that works.  It worked out well with him having a few more early days that we were able to spend a little more time at the hospital.  This was a good thing as Emily dad a crazy week.  It started more last week when we noticed that she wasn't resting or handling being held like she normally would.  Instead she was crabby almost al the time. We knew she had reflux and it just was getting worst and it was not helping her to stay up in her oxygen saturation.  Bringing my thoughts up to the NP one day they decided to look into things. 

On Sunday, they did labs and found her red blood cell count was really, really.  Which at the time they didn't know what they would do.  Monday, they decided she need her fourth blood transfusion.  With the hope to give her the energy and feel better.  Then on Tuesday they put in a different feeding tub.  The one she had before was a NG tub that ended in her stomach, this new one is a NJ tub that by passes her stomach and puts the food in to her intestines.   They did this to try and help the reflux and boy has it.  The downside of this is she was taken off the bottle for the week.  They wanted to help everything heal from the reflux and hopefully try again this coming Monday.  We have notices that we everything healing from the reflux she sleep better and in general is a happier.  She is also taking the pacifier so much easier.  We use to have to hold it to her lip for some time before she would open her month wide enough to take it, now when she wants it she opens right up.  This gives us hope that this next time around with the bottle with be easier and she will take to it so much faster.

With that we have some cute pictures:

Easter and Growing, Growing

Sorry for the missed week.  Life has gotten really busy since I have started back at work.  We are trying to find the balance between work, hospital and home.  As we settle in our new routine with me going back to work.  It makes for some really long days, yet I go to work in the morning and I have a nice coworker that is willing to take me to the trax station that is near by after work.  I have about an hour ride to get up to Children's so I get there about 6:00 to spend the evening with Emily.  Later Blair joins me and we leave the hospital to start over the next day around 9:00.  Some times we get visitors that come. This week my parent came and Emily's Papa held her for the first time.















With Emily we have been able to learn how to do most if not all of her cares.  It is nice when we get a nurse that doesn't try and take over caring for her.  We have loved seeing her grow.  Ending this week Emily is 2 months old today.  She is weighing 4.7 pounds and 17.5 inches long. 


This week Emily also started eating out of the bottle.  She was able to try about 2-4 times a day with about 10 ml in the bottle at a time.  She did better with some attempts then others.  We did find that the more awake she was the better she seems to do, which in some cases harder for her to do as she is still really sleepy most of the time.













The biggest event this week was Emily's first Easter and to say she made it a good one. Getting a basket from us and the Hospital.  I also worked hard these last two weeks to make our families Easter outfits.  We loved dressing Emily up and everyone that saw her today thought she was the cutes thing.

Emily's Easter

Do I have to wear the dress

Family's Easter

Big Girl Crib

The big news this week is Emily got move to her big girl crib.  When Blair and I walked into her room on Tuesday we were surprised to see Emily's isolet gone and a big open crib put in its place.  They decided that she was maintaining her temperature really good so that day they moved her to an open crib.  It makes life so much easier to pick her up and help take care of her when I am up seeing her.  What is also does is make her look small compared to the big crib.

On Wednesday, she was also put on new breathing cannulas.  She is no longer sporting her white mustache, but you can actually see her face.  This is because she has moved down in how much flow support she is needing down to 1ml flow pressure.  With this change in support they told me I could start trying to breastfeed her.  It was such a shock that I was scared to try most of the week.

Our little burrito

This week we have also started to give Emily full baths.  We thought she would really like being in the water, for when we did her sponge baths she was really relaxed with not needing extra oxygen.  Boy were we wrong, the moment I put her in the tub she kicked her feet against the edge of the tub trying to get out.  We tried again a few days latter and she did a lot better and loved setting in the water.  She still didn't like being washed, but maybe that will come.

On a said note, I went back to work this week.  Which means we only get to see Emily in the evenings and it make for really long days.  I go to work and then I have to ride track to the hospital.  It is nice to have track there even though it makes the trip an hour long instead 30 minutes.  Work was good and I was able to get right back into the swing of teaching.  Everyone at work was also excited to see me came back and all is great. 

Bathtime and Clothes

 

This week Emily moved off her BiPAP and got a new machine.  She is now on a presser flow which they are slowly wiener her down.  This week she was at about a presser of 4.  The nurses still have to chase her oxygen up and down and she ranges from 21 (normal air) when she is relaxed and can go up to around 30 when she is getting bugged and not liking something that is going on.  

 



Don't take my pacifier

Emily is also getting to good a her pacifier.  Where before when she had it it was hard for her to suck and breath at the same time and we would have to take her pacifier away to bring her oxygen back up.  With her getting better at the pacifier this is the first step for her to eat.  She is funny sometimes when she has it in her hand goes up to hold it.





Emily likes be bundled with her hand up next to her face.  One night, after her bath, we bundled her up she got her fingers in her mouth. 

 

We are able to start giving Emily a bath by ourselves.  During bath time this week Emily was very agitated all day and we were thinking she might not do good during a bath, but she surprised us and relaxed during her bath time.  Her oxygen went up and she let us hold her after we were done.

 
 
 

 

 

 

 

 

The nurse one day decide that Emily was starting to become to cute not to dress so even though she is still in the isolate (with temperature control) they started to put cloths on her.  I surprised me that how much bigger she looks with clothes that fit her.  As one nurse had really big clothes to put her in one night and she is just swimming in them.

 

 

 

 

Transfer and Sergery

This week started Monday morning with Emily's nurse calling us saying she was to the point of needing to be transferred.  Her ultrasound got worse and she could not keep her oxygen and heart rate stable.  The plan was to transfer her late afternoon, early evening as Primary Children's still needed time to get a space ready for her. 

All strapped in for my first ride

The transport team came and because of her desats. they decides they needed to re-intubate for transport.  This was hard as it took the team about an hour to intubate her because when they would tray she would desat to much and they would have to stop bring her back up before trying again.  They eventually got it and we were on our way. 

Emily's new home at Primary Children's Hospital

When we got to Children's the neurologist was there to evaluate Emily, and he said that they would continue to watch her as she didn't quite meet the requirements to intervene at this time.  I hat when doctors do this as we were transfer for they to do something and they say they still need to wait.  Well it didn't take long before Emily started to show them what she needed.  On Wednesday Blair and I were getting all ready with our plan for the day when we got a phone call from the doctors saying they were going to do surgery that day.

We dropped everything we were planning on doing and headed to the hospital.  The surgery was simple as they were going to put in a ventricular reservoir.  Emily did really good in surgery it was harder on me as I had to say bye and to think that she is only a month old and having to already have surgery. That evening she got off the ventilator and is now back on the CPAP with a rate. 

All tired out just after surgery

Yea the tub is out once again

She is now getting daily "TAPS" were they take a needle into the reservoir and drain off her extra fluid.  The first time they tried to pull all the fluid they needed to pull, yet she didn't do well so they are now Tapping her twice a day and only pulling half at a time. 

We have also been able to start holding her again. Which has been a grate bonding for her and us, for after the fist time Blair held her last week he now fight me to hold her.  It was a hard beginning of the week but has ended on a high note.

Aunt Melissa is the first to hold Emily other than mom and dad.

After surgery this week Emily has also started to be a cute as she starts to make spontaneous facial expressions.  Blair got a couple of picture while she was awake one time.




One time as she was sleeping Emily got her fingers to her month.