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.

A Rollercoster

When we had Emily everyone said how we were on the roller-coaster of our life.  With the ups and downs of Emily being in the NICU.  Over the past few weeks Emily was doing so good in her progress that I forgot that there was to be downs, until we hit this last week. 

The complication really started about a week after she was born, when the doctors told us that Emily had a bleed in the brain.  At that time they didn't know what this meant for her, yet they would do weekly ultrasounds to watch it.  The following week her test showed her bleeding stopped, yet she now had fluid build up.  They continued to measure her head daily and did weekly ultrasounds.  Then this week when they did her ultrasound on Monday I was hit with the news that the fluid on the brain was not looking good.  They are starting to consult with the neurologist at Primary Children's as it was getting to the point that she might have to be transferred there for them to manually drain the fluid with the possibility of needing to put in a shunt. They are still watching her fluid levels and have moved doing ultrasounds twice a week. 

This was really hard to hear and then just after that Emily decided to have desaturations in her heart rate and oxygen level.  After a scary situation the doctors decided to give her back her breathing rate.  She has been on her full rate of 10 the enter week.  This is to help her focus on relaxing to help her brain get better. 

On other the other side of things, they removed her PIC line which means that they were able to slowly up her food intake.  It also means Emily is getting all of her feeding through her feeding tube in her mouth.  (They want start bottle feeding for a few more weeks).  With the increase in food she is starting to really gain weight and is looing more like a tiny baby. 

Last things as it took some pushing, yet Blair had got to hold Emily for the first time Saturday night.  Of course the night that he holds her for the first time he didn't bring his phone so we didn't get a picture.  Emily had her arms out and he said it felt she was trying to give him a hug.  Now with him getting over the first hold he thinks I have to share her more, but we will see about that.