Still Going Strong!

Day 37

Emma is still going strong on the SiPAP!!!  They even lowered her oxygen just a little bit more!  She is such a champ.  She was much quieter yesterday - I think she was tuckered out from her escape attempts on Saturday.  Plus, it is a little more work for her to be on the SiPAP so hopefully she realized this and was trying to conserve her energy.

"Hey!  I remember this thing..."

"I don't think I like it..."

"Let me see if I can get it off..."

Unfortunately, Emma lost quite a bit of weight last night and is back down to 730 grams.  However, the nurse weighed her without the mask on and previously she was weighed with all the ventilator tubing.  Also, her last weigh-in she still had an IV in.  So we think those extra items weighed her down a little, plus she may have lost a little just from the extra work of the SiPAP.  But we're sure she'll be a chunky monkey again in no time. 

Daddy's Little Girl

Day 36

Emma has had a very exciting few days!  She turned 5 weeks old yesterday and got to see her Daddy for the first time in awhile!  He was battling a bad cold and was unable to see the little munchkin, so both of them were very very excited to see each other yesterday. 

The steroid treatment seems to be helping Emma immensely.  Yesterday, they lowered the settings on her vent to the lowest they have ever been and she hardly de-satted at all. 

Emma decided to show off for Daddy by having a great day and by being the feistiest we've ever seen her.  She squirmed around in her isolette like never before.  The nurse kept trying to tuck her feet in, but as we know, Emma does not like to be tucked in.  She would immediately begin kicking ferociously to free her leg, and then rest for awhile with her leg hanging out. 

Then she would start kicking and squirming again - we think she was trying to make a break for it and get her whole body over the side of her bumpers.  She was very upset when she couldn't make it.  She had lots of cranky faces to show off. 

Almost there! 

Then Mom and Dad left and had a very nice date night (saw Megamind 3D - it's very cute and we recommend seeing it).  On our way home, we called the hospital to check in on Emma and was told that they went ahead and extubated her!!!!!!!!!  We couldn't believe it, so of course we had to stop in on our way home to see her, since Dad hadn't gotten a chance to see or hear Emma when she was extubated the first time.

She was doing great on very low oxygen settings and was snoozing away.  But we woke her up to give her some kangaroo time with Daddy.  They both loved it. 

Emma is still doing very well on the SiPAP this morning, so we're hoping she beats her previous record of 18 hours and keeps doing well. 

They also increased Emma's feeds to 5 mL/hour yesterday and she is doing great with them.  She gained another 10 grams last night and is up to 790 grams.  We are loving the good days!!

Beauty AND Brains!

Day 34

Emma is continuing to ride the NICU roller coaster.  She did not tolerate the albuterol last night at all, and it seemed to actually make her worse.  They had to increase her oxygen and her ventilator pressure and she was de-satting quite a lot.  This continued through most of the day.  The doctors decided to start her on another course of steroids to see if they will help her lungs continue to develop.  She had gotten the first course about a week ago and they did seem to help at the time, so hopefully this course will also.  Emma got her first of three doses today.

She also got another blood transfusion this afternoon to see if that will help her.  Usually getting some additional oxygenated blood helps with the oxygen saturation, and also her hermatocrits were a little bit low.  Although, unfortunately this means she had to get 2 IVs put in today.  Emma was feeling extra feisty today so she had to get some extra tape put on them to keep her from pulling out the IVs.

After speaking with the nurses this evening, Emma seems to be doing better.  They were able to bring both her oxygen and ventilator pressure down and she is still doing well.  Hopefully this continues, but as we are all learning, every day is a new day and we never really know what to expect. 

Emma also had another head ultrasound done this morning.  Apparently her head circumference had grown a little bit faster than normal and the doctors were concerned about some extra fluid on her brain.  But we got the ultrasound results tonight and everything was normal, so I guess Emma just has an extra big brain!  I knew she was going to be a smart cookie.  :) 

She also gained back the 10 grams she lost last night and is back up to 780 grams. 

So after a difficult day, we got some better news tonight.  Stay tuned! 

Baby Steps

Day 33

Emma has been doing a little bit better with her new tube.  It was not the drastic improvement we were hoping for, but every little improvement is good.  She has been needing less oxygen, but the pressure on her vent has gone up a little bit.  She is still de-satting some, but not as much as before.  So we're just taking baby steps, but I guess that is par for the course...

Mom got to kangaroo Emma yesterday and we had a great time.  When she first comes out of her isolette, Emma looks all around to check out her new surroundings.  Eventually she gets sleepy and takes a nice little nap with Mommy. 

Emma has been consistently gaining weight too, which we are very excited about.  She is now up to 780 grams, which is just about 1 pound, 12 ounces!  Grow Emma grow!

continued...

Emma is still having her breathing issues unfortunately.  She was tried on a course of Lasix earlier today to see if that would help and it did not seem to.  She is going to get a nebulizer dose of albuterol tonight as well to see if that works.  It is very frustrating for us to see her struggling with this and the treatments not working, though we know both Emma and her doctors are doing their best.  Hopefully we can find a treatment that works and Emma starts to feel better.

The dose of Lasix Emma got flushed a lot of fluids out of her, so she lost 10 grams tonight.

One Month Old!!!!!

Day 31

Emma has reached a great milestone today.  She is one month old and going strong!! 

Over the last couple days, she was generally improving with her various levels (her sugars are back down, sodium is back up, urine output is back up, etc.) but she was desaturating quite a lot and she had to be kept on very high levels of oxygen.  The doctors ordered an echocardiogram this morning to see if she had a hole that opened up in her heart.  She had echocardiograms done right after birth and then about a week after birth, since it is possible for the hole to re-open even if it's not present right at birth.  This is extremely common in preemies but Emma has never had one - the doctors were actually shocked that she never had one because of how common it is.  But, they thought this may be the reason for all the de-satting, since the pressure settings on the vent have stayed low and it was just the amount of oxygen she needed that has been increasing. 

When we talked to Emma's primary doctor this morning, she believed that Emma's issue is just "mechanical" since she really has no other symptoms of being sick - basically the equipment she has is not ideally suited for her, specifically her ventilator tube is too small.  Last week, the size of her tube was increased and she started doing much better on it.  But when she was extubated and then reintubated, they went back to the smaller tube since she was having some swelling in her throat and they thought the bigger size was still too big.  Well, now that Emma has grown quite a bit over the last week, the doctor wants to try going back to the bigger tube to see if that will help with the de-satting, as long as the echocardiogram was normal. 

We talked to the doctors tonight and the echocardiogram was in fact normal and showed no holes in her heart.  Therefore, Emma is getting reintubated tonight with the bigger ventilator tube and hopefully this will help all the de-satting.  She just had it done late this evening so we'll see tomorrow how well it's working out.

Emma also gained another 30 grams over the last two nights and is now up to 750 grams!!! 

When we talked to the doctors, they still expressed that even though all the de-satting may be a minor setback, overall Emma is still doing very very well.  Even the doctor called her a "tough cookie"!  And we could not agree more - she has proven everyone wrong about how well she would do and we are just so proud of her.  Even though Mom and Dad have quite a few more gray hairs than before, we would not change a thing.  We are so blessed to have a beautiful, strong, and very feisty daughter and we are excited to watch her continue to grow and develop.  We love you, Emma!!  Happy one month birthday!!! 

Emma is wide awake when she's on her back...

Getting herself tangled up in her measuring tape...

Mmmmm... fingers..... yum!! 

Emma was given a gorgeous blanket from our friends Brigid & Tom.  We cannot wait until she's big enough to be wrapped up in it!  She's not yet able to regulate her body temperature, so for now we'll show it off and use it to keep the light out of her isolette so she can sleep.

Looks like it's working! 

Chunky Monkey

Day 29

Well, I'm not quite sure how to categorize Emma's day overall.  There are a lot things that keep going up and down and back and forth, so every day some things get better and some get a little worse.  Emma was still de-satting quite a bit today, her urine output is still slightly low, her glucose levels are too high, her sodium levels are too low... so all of these things together could mean infection.  But at the same time, Emma's blood gases look good (these are blood samples taken that are measured for the amount of oxygen and carbon dioxide in the blood, among other things).  Therefore, the doctors thought that it likely was an infection since her gases were good but she was still de-satting.  The doctors even wanted to lower her pressure on the vent some more since the gases were good but the nurses thought it wasn't a good idea because of all the desaturations.  So they decided to do some bloodwork to check for infection. 

Well, the bloodwork came back tonight and it doesn't look like she has an infection.  Her white blood cell count is normal and some other markers are within the normal range as well.  Her hermatocrits are low again though, so she is getting another blood transfusion tonight.  She is also getting some additional sodium to help elevate those levels.  Also, after checking in with the nurses tonight, they did end up lowering her pressure on the vent since she was satting a little better, and the blood transfusion will help as well.  So overall, nothing seems too serious, just some things are too high or too low, but they are basically just going to keep an eye on it all and see what happens.  There is not really any one explanation for everything going on, other than the fact that she is a teeny tiny preemie and is still growing and working through all of these things.  So again, we'll just wait and see what tomorrow brings! 

Emma also had a head ultrasound done yesterday to check for any intraventricular hemorrhages ("IVH", meaning bleeding into the ventricles of the brain).  This was done after her birth, about a week after her birth, and again at about a month old.  Thankfully, they have all been completely normal and show no bleeding!  This is another very common but very serious condition for preemies and we're very thankful that Emma does not have any bleeds. 

Also, I have neglected to mention that Emma has been packing on the grams lately!  She has been gaining every day, and tonight gained another 40 grams which brings her up to 720 grams!!!  That is just shy of 1 pound, 10 ounces!!!  Wowza!  And to help her even more, they increased her feeds to 4.5 mL/hour, so hopefully she'll keep on gaining - can't wait for her to hit the two pound mark!! 

Emma was very excited to see Grandma and Aunt Lauren today.  She loved her new hats that Grandma made for her - she has quite the hat collection going now!!  Her Grandmas are too good to her.  =) 

I see you!

4 Weeks Old!!

Day 28

Emma is four weeks old today!  She had a little bit better day as well.  Her hermatocrit levels were back up after the blood transfusion and her urine output seems to be back on track.  Her sugar levels were still a little bit high but not too bad.  She was still de-satting throughout the day, but better than yesterday, and her oxygen levels were a little lower too.  Mom was able to kangaroo her again today so we both felt better after that.

The nurse gave Emma a binky!  I think she liked it.

It made her sleepy.  Or maybe it was the giant diaper they put her in...

Emma needed a nap after kangaroo time.  The nurse made Emma a hat with a bow.  She's not sure if she likes it or not.