4 Pounds!!!

Day 78

Emma had a great weekend!  She is now 1810 grams, which is just about 4 pounds!!  Her weight gain has been perfect - about 1-2 ounces each day, which is just where she should be.  She is still getting 32 mL every three hours and has been doing great.  Just one teeny little spit-up today and that was it.  We're told preemies are also very likely to have reflux issues as they get older, so we're keeping an eye out for that.  But so far, so good!  Her feeds are now given to her by gravity feed.  Instead of being given through a pump over half an hour, they are just held in a syringe above her head and allowed to flow through using gravity - not too quickly, so it still takes about 15-20 minutes, but it's another step forward for her. 

Emma is still on the CPAP at 25% oxygen.  Her last blood gas this morning was "spectacular" (according to the nurses) and good enough for her to be moved onto the nasal cannula, but they are giving her another day or two on the CPAP just to keep from pushing her too quickly.  Going to the gravity feeds is more of a challenge for her than the pump, so they will give her some time to get used to that.  We are moving forward and do not want to take any steps backward! 

Similarly, now that Emma is over 1800 grams she is "eligible" to be moved into the open-air crib.  They are also going to hold off on this for a couple days to let her continue to improve and get stronger.  We are very excited that Emma is meeting these wonderful milestones, and more than happy to be patient and take things slowly so we don't move backward. 

Happy New Year!

Day 77

Happy new year everyone!!  We can't believe 2011 is here already.  2010 was quite a year for us, and we know 2011 will be even better, because we will be able to take Emma home with us!  We like to think that we are lucky to have gotten to know her earlier than expected.  If she had been on time, she wouldn't have come home until February anyway, so we've just spent these last few weeks being able to watch her grow and develop, which we otherwise wouldn't have had the opportunity to do.  So here's to a great year for all of us! 

Emma has continued to progress very nicely this week.  She was moved from the SiPAP onto the CPAP and they have been weaning down on her settings on the CPAP as well.  Hopefully in the next couple days she will be put on the cannula again!  Her oxygen level has remained very low (around 25%, and room air is around 21% oxygen) so she is not requiring very much support.  She's getting stronger and has also been very stable. 

She is continuing to do well on her feedings every three hours.  Her feeds were increased to 32 mL every 3 hours.  She has been gaining weight steadily and is a whopping 1700 grams, which is 3 lbs., 12 ounces - creeping up on 4 pounds!!  She looks great and is getting nice and chubby.  It's amazing how much she has grown in a relatively short time. 

We've also noticed that Emma has been sleeping much more soundly.  She seems to be transitioning to more defined awake vs. sleep times, whereas previously she would be continuously moving and bouncing between being awake and asleep.  Now when she falls asleep, she is much quieter and very peaceful, but still active and alert when she's awake.  It seems like she's maturing! 

Here are some pictures from yesterday.  If anyone is wondering, the mask that Emma is wearing needs to have a good seal around her nose in order to work properly.  Therefore, the elastic bands on her cheeks need to be pretty tight to be effective.  Since they can dig in a little into her face, the nurses just put some cotton underneath them to protect her. 

Still snoozing...



Daddy on diaper duty (it was just wet, so his "count" doesn't get to go up yet)  =) 

Mommy cleaning off her face.

All done!

"I don't want to sleep!  I want to play with Mommy and Daddy some more!"

An organization (not sure which one) donated these little gloves to the NICU babies to symbolize how they are "little fighters" and to support them in their fight.  We think they're adorable (and very appropriate)! 

Keep on Truckin'!

Day 73

Emma has continued to have great days lately!  Every day she is getting a little bit better.  The rate on her SiPAP is very low (which is a good thing), so right now they are just able to keep lowering her oxygen levels.  She will probably hang out on the SiPAP for a little longer before they will try her on either the CPAP or go straight to the cannula.  She has really had no issues except for the occasional minor dip in her sats, but she has been very stable overall. 

She was already moved to feeding every three hours and she is doing great with that too!  Again, they will keep her on this schedule for awhile longer, until she is on the cannula and able to be tried on the bottle.  What an exciting day that will be! 

Emma has still gained weight steadily, and is now at 1590 grams (triple her birthweight!!), which is 3 lbs., 8 ounces.  She is definitely looking great and we had a lot of fun getting her a few new outfits to wear.  We were told not to buy too much since she will outgrow the preemie size quickly, but we have a nice selection for her to try.  We'll try to keep the pictures coming to show off her new wardrobe, but she has been swaddled or covered in blankets lately so it's tough to catch her in just her clothes!  We'll do our best though. 

We have been able to hold her every day and it has been so wonderful.  She usually comes out looking all around and then falls fast asleep.  Another great thing about her being on the SiPAP is that we can hear her again!  She gets a few good cries in every once in awhile, but overall she is pretty calm.  She'll get some good cranky faces going pretty often and a few cries or whimpers (which make Mommy and Daddy laugh because she's just too cute!), but definitely not a full-on sob fest yet!  I'm sure that will be coming eventually.

We are just so happy with how Emma is doing these days.  Keep on truckin', Emma!

Merry Christmas!!!!!!

Day 71

Merry Christmas to all!  I apologize for the lack of blog postings over the last several days, but we got caught up in the hustle and bustle of the holidays and have been blessed to spend a lot of time with our wonderful family and friends.  We happily celebrated Emma's first Christmas with her at the hospital and are already looking forward to her second Christmas where she can be home with us. 

I hope no one was too worried about Emma, because she has been doing great lately!  Her settings were weaned down consistently on the ventilator, and last night they went ahead and extubated her!  It was a wonderful Christmas present for Mom and Dad (although the doctors didn't extubate her just because it was Christmas.  They thought she was ready for it, but still, it made our holiday even brighter).  She is now on the SiPAP and doing wonderfully.  They brought the rate down on it some more today and her oxygen level is pretty moderate (around 45%), which is what it has been for awhile now.  She still has her occasional desaturations (but getting much less frequent and she doesn't dip too far) so she needs a little extra oxygen, but she's requiring much less pressure, which is why she was moved onto the SiPAP. 

Another big milestone that Emma reached is that she is now getting small "meals" for her feedings.  Previously, she had been getting fed on a continuous drip through her feeding tube of 10 mL/hour.  Now, she is getting her feedings every two hours, over a half hour period.  Therefore, she is now getting 20 mL through her feeding tube over half an hour, every two hours.  She is gradually getting used to having her belly filled with a little meal and having to digest all of that, rather than just the continual steady feeding at a slow rate.  She has been doing great with this new feeding schedule!  She is a hungry little monkey!  The next step will be moving to every three hour feedings, and then they'll try her on the bottle.  Right now, her brain is just not ready to handle the "suck-swallow-breathe" coordination technique that babies must learn in order to bottle feed.  It doesn't have anything to do with her individual progress, but any baby at her adjusted age would not be ready at this point, and they won't even try it for at least another week or two.  I believe they also want her on the cannula before they try bottle feeding too.  But this is great progress for her!  

Emma has also been doing a great job at maintaing her body temperature.  She is able to be dressed and covered up, and still just needs to grow some more until she can be moved into a bassinet!  She is up to 1500 grams, which is 3 pounds, 5 ounces!  She is growing steadily which is all we can ask for! 

One of the best parts of all of Emma's improvements is that we were finally able to hold her again.  She was not able to come out of her isolette when she was on the jet ventilator, and once she had settled into the regular vent again, she was able to come out and be held by Mommy and Daddy.  Also, since she has gotten bigger and can maintain her temperature, we are able to swaddle her and cradle her in our arms and not just do the kangaroo care.  Don't get me wrong, the kangaroo care was wonderful and special and we wouldn't have traded it for the world, but it is also amazing to be able to watch her face and snuggle her while she's swaddled.  Basically, any time she gets to come out and play is a wonderful time! 

We hope everyone had a very Merry Christmas and was able to spend time with their loved ones.  We are thrilled with Emma's continued progress, thankful for her strength and tenacity, and grateful for the wonderful family and friends that have given us so much support over the last 10 weeks.  We are just starting to see the faintest glimmer of a light at the end of the tunnel for when she can come home with us, and I think it's Emma chugging along in her Little Engine That Could... "I think I can, I think I can, I think I can...." 

This her "spa robe":

Held by Mommy:

Held by Daddy:

St. Jude's donated teddy bears to the NICU babies and their families.  Curious needs some back-up anyway; Emma is quite a handful and he's still taped to the isolette! 

 

Merry Christmas Emma! 

Today... extubated!  Back on the SiPAP with an elephant trunk. 

Getting Better Every Day

Day 66

We are very happy to report that Emma is continuing to get better.  Over the last several days, the doctors were able to wean down the settings on the jet ventilator, and today she was switched back to the regular ventilator!  They have already started to wean down a little bit on the regular vent too.  They are still going pretty slowly and not pushing her too quickly, but it has been steady improvement, which we are very pleased with. 

They have also continued to wean down on the temperature in her isolette and are at the lowest point they will go until she is moved into a bassinet.  She is doing great at maintaining her body temperature, and they have even started having her wear a shirt!  It is very big on her (it looks more like a robe she would be wearing at the day spa) but she looks very cozy.  She has been all tucked in to her blankets as well and is being a very good girl. 

Emma is still getting 9 mL/hour and is up to 1380g, which is about 3 lbs, 1 oz.  Grow Emma grow! 

Happy Holidays!

Day 63

Emma has continued to show some slight signs of improvement.  They have been able to wean her down a little bit on her oxygen but are taking things verrrry slowly.  She still has a long way to go, but we are hopeful that she will continue on the road to recovery.  Her latest chest x-rays still show the pneumonia mostly in her right upper lung.  The rest of her lungs are still immature and show signs of the chronic lung disease, but they do look much better overall, especially compared to the x-rays from when she was very young.  She has completed the antibiotics, so she doesn't have any more IVs in her.  They will continue to monitor her bloodwork and take more x-rays to see how things progress.  But for now, we're just giving her time to rest and recover! 

Despite the fact that we are all waiting patiently for Miss Emma to improve, Emma herself has NOT been very patient.  We spoke to the nurses last night and found out that Emma had decided to go ahead and extubate herself!!!  Apparently she was able to loosen the tape around her tube and pull it out!  They got it back in pretty quickly and Emma was fine throughout the whole ordeal, but they now call her "Houdini" and agree that we are going to have our hands full.  She is definitely fed up with being intubated, but hopefully over the next several days the doctors will be able to extubate her (without Emma's help). 

Emma has continued to do well with her feedings and is gaining weight.  She is now getting 9 mL/hour and is up to 1320g (2 lbs., 14 1/2 oz.) - looks like she'll be hitting the three pound mark in a couple days!!! 

In addition, Emma is getting closer to fully maintaining her own body temperature!  Up until this point, the incubator has done most of the work to maintain her temperature.  She has been wearing a temperature probe, which is the white wire connected to her with a silver disc on it - usually the nurses cut it into the shape of a heart.  This constantly would read her temperature, and would increase or decrease the temperature in the isolette based on her temperature to keep her around 98.6.  Now, the isolette is on "manual mode", where it is set to a certain temperature (right now about 92 degrees) and Emma is maintaining her temperature by herself.  They will continue to wean down the internal temperature until they get to the equivalent of "room air".  Generally, when she's around 1800g, they will switch her into a bassinet, which is an open-air crib.  This is as long as there are no other complications going on and she'll be evaluated at that point to make sure she can tolerate it; the weight goal is generally just an estimate.  Also, when she gets off the jet ventilator, she'll be able to wear clothes!  We are very excited about that. 

Right now Emma is wrapped up in a blanket to keep her warm.  She doesn't seem to be thrilled with it, but hasn't ripped off the blanket too much.  She is able to stick her feet out underneath, so she seems satisfied with that. 

So it seems like things are starting to slowly turn around for Emma.  Emma arrived 17 weeks early, and the general estimate for when she comes home is her original due date.  She is 9 weeks old today, so if all goes well, we are more than halfway to the point of bringing her home!  We have a lot of work to do to get to that point, but she has been such a fighter that we are sure the next several weeks will fly by. 

We have tried to bring a little bit of holiday spirit to Emma and her nurses.  Since we won't be able to have her home for Christmas, we'll bring Christmas to her! 

Even Curious is getting into the holiday spirit!

 

His hat may be a little big though....

Peekaboo!

Strike a pose!  (what a little diva!)

2 Months!

Day 61

Today, Emma is two months old!  We are very excited about this milestone.  Emma has been doing just a little bit better lately, although she did have one incident last night.  As soon as I got to the hospital to visit, Emma started de-satting and her heart rate got very low, very quickly.  The doctors and respiratory team were called in immediately and jumped to action to figure out what was going on.  She wasn't responding to the additional oxygen or bagging, so they ended up extubating her and reintubating her with a new tube.  They are not sure why she started to crash so suddenly - at first they thought it might be a clog in her tube, but that looked clear.  Once her new tube was in though, she jumped right back up and was back to her normal self.  The doctors did a chest x-ray to see if they could tell what had happened (such as perhaps a lung had collapsed) but it looked about the same as her previous x-rays.  It's possible that the tube had gotten into a bad position from all her moving and squirming, but everything seems to be back to normal now.  She definitely gave us quite a scare, though!  She's going to have some 'splainin to do when she grows up....

Other than that, she has had some slight reductions in her pressure on the ventilator, which is a good thing, but her oxygen level is still pretty high.  Unfortunately, she had gotten down to 65% before her little "episode" last night, but she's been close to 100% since then.  Her feeds were increased to 8.5 mL/hour to help her pack on the grams.  She had gotten another blood transfusion yesterday, as well as a dose of Lasix to flush out the extra fluids, so she lost ten grams.  But she is still tolerating her feeds very well and everything else is still fine except for the breathing. 

If nothing else, Emma has been teaching us quite a bit about patience.  We know she just needs a lot of time to get big and strong, so we'll just let her take all the time she needs to get better.  We are there for her every step of the way.