101 Days

Day 101

Well, we have officially hit triple digits!  Emma is 101 days old today.  We are happy to report that it looks like we are finally making some progress with her bottle feeding!  Emma took her whole bottle this morning, and didn't have any brady's or desats!!  Since she did so well, she is now getting the bottle every third feeding instead of once per shift!  She took 40 out of 45 cc's at her second feeding today too!  I was able to be there to do the second feeding and she did a great job.  The last time I fed her was Sunday night, and she seemed much more coordinated even in just that short time.  She just started getting a little bit sleepy toward the end so we didn't push her to take the last 5 cc's.  We are very happy that she is moving forward!

We are also thrilled to report that Emma had another eye appointment with the retina specialist and she has no more retinopathy!!!!  Whatever minimal damage she had has now resolved and her eyes look great!!  She will probably have an appointment with a pediatric opthamologist in a couple months just as a follow-up, but we are so excited that this has healed on its own.  Emma truly is a little miracle. 

Change of Scenery

Day 99

My apologies for the long delay between postings!  We've been busy as always and have also been working on getting Emma's room together.  Still a long way to go but we're making progress!

Overall, it has been a relatively quiet week.  Emma is still working on the bottle feeding and still trying it once per shift.  We are starting to see some improvements in her coordination; she doesn't desaturate or brady nearly as much, which means she is remembering to breathe (always a good thing!).  It will also continue to take some time for her to have enough strength to keep nursing, as it's a lot of work for her and she gets tired easily.  She is now getting 45 mL every three hours. 

Emma had the ENT (ear, nose, and throat) doctor take a look at her this week after all.  They said everything looks normal and she just has a little swelling around her vocal cords, which is also pretty normal given the extended time she was intubated.  This should resolve on its own and likely doesn't interfere with her feeding. 

Emma also went in for a "swallow study" on Friday.  This is done by putting barium in her feeds and then taking x-rays to see how her feeds progress through her system.  Unfortunately, she flunked, which means that she does have some "silent reflux".  Basically, her food comes back up her esophagus like typical reflux, but she doesn't show the usual signs like spitting up frequently or desaturations (which is why it's silent).  They then monitored how she did when she was fed formula thickened with rice cereal and she was fine with that, since the thicker feeds generally stay down better than regular milk.  The current plan now is to give her the formula and rice cereal each time she bottle feeds, and then she gets the regular milk for all her other feedings.  It's good to know that Emma has the reflux, but it probably doesn't have too much of an impact on her progress with the bottle.  If things seem to get worse for her, they might give her more of the formula/rice cereal instead of milk, but we'll just see how things progress. 

Well even though she's have some feeding challenges, it hasn't had any impact on her weight gain!  Emma is 2430g, or 5 lbs, 6 ounces!  She is looking wonderful and starting to outgrow some of her preemie clothes!!  We can't believe how fast our little peanut is growing! 

Emma was also finally moved over to the special care rooms in the NICU!  It's just down the hall and is pretty much the same set-up as her old room.  It's a little bit of a bizarro world though, since everything is the same but a little bit different.  There are currently 6 babies in her room, and there are usually 2-3 nurses in the room, so sometimes one nurse has 3 babies.  In her old room, there were usually no more than 4 babies and 2 nurses.  While some of her nurses are the same, for the most part she has all new nurses, which is a little disappointing since we had gotten close with a lot of them and they were wonderful.  Her old nurses will frequently stop by and visit though, and I'm sure these new nurses will be wonderful too.  The babies here are all very stable (they're all in shoeboxes like Emma's), so it can either be very quiet (no monitors and alarms going off), or very loud (lots of crying since no one is intubated or in isolettes).  We're just very happy that Emma is moving closer to the door out of there! 

Mmmmm... fingers!

nom nom nom

Yes, binky tastes better.  Emma is getting pretty good at holding her own binky!

She loves having her hands out by her face.  She likes being swaddled as long as she has her hands free.

Daddy and Emma being silly. 

It takes her awhile to wake up from her naps. 

Still so sleepy.

And cranky of course.  Definitely not a morning person! 

Wait, did someone say dinner? 

First I need to be weighed.  Look how big I'm getting!

Ok you weighed me, now feed me please!

3 Months!

Day 92

Emma is 3 months old today!!!  It feels like time has flown by these last few months, but at the same time we are anxiously awaiting Emma's homecoming.  She still hasn't gotten the hang of the bottle yet, unfortunately.  She is still having good days and bad days with it.  They brought in a speech therapist to see if she could help with the feeding, and also debated whether to have an Ear, Nose, and Throat specialist look at her too.  Right now, they are holding off on the ENT doctor since it would be a little invasive to do the exam, and her doctors think she just needs some more time.  So we'll continue to wait and see - we're hoping one day it will just click for her! 

Emma is still on the nasal cannula at around 25-28% oxygen.  She's still getting 40 mL every 3 hours, and she's up to 2210g, which is 4 lbs., 14 ounces!  Almost 5 pounds!!  She is looking great and staying nice and chubby.  You'll notice in the pictures below that Emma is now in what we call a "shoebox."  She was put into a smaller crib, but not really for any specific reason.  It is much smaller so it may keep her a little snugglier and warmer. 

Emma also seems to be getting held "hostage" by the doctors and nurses.  There is a part of the NICU called "special care" which is essentially the last stop in the NICU before discharge.  Emma has been eligible to be moved there for some time now, but the nurses don't want to let her go!  There is really no difference in care or treatment in the special care room, so we have no problem keeping her where she is.  We know all the nurses in the room she's in and they obviously are quite attached to Emma and take great care of her, so she may just stay put until she's ready to go home.  Emma has quite the fan club going! 

Another very important milestone that Emma reached this weekend was her very first projectile spit-up!!!  Emma's Memere and myself were "lucky" enough to be witnesses of this, and also directly in the line of fire!  It came as quite a surprise but was really just pretty funny.  As Emma was getting gavaged (gravity fed), she had a little sneezing fit as I was holding her.  Her sneezes are adorable as it is, so I was laughing and probably jiggled her just enough to send some food shooting out.  Next time, Memere and I will wear a raincoat! 

This is what Emma says about the spit-up:

Nya nah nya nah na na!

Aunt Lindsay helping with the gravity feeding!

The nurses are starting to transition Emma into sleeping more on her back, since that's how she has to sleep once she comes home.  It's much safer for babies to sleep on their backs, but since she's still hooked up to the monitors in the NICU, it's fine for them to be on their tummies since they usually prefer it.  But no more tummy sleeping for Emma! 

Bottle Feeding Practice

Day 89

Emma is still truckin' along.  No significant changes, she's just working on bottle feeding.  She's still having good days and not-so-good days with it.  Still trying to get that coordination down!  She's up to 2105g, which is about 4 lbs., 10 ounces. 

The retina specialist had come to look at Emma's eyes a few days ago and basically said the same thing as the regular opthamologist (mild ROP).  She'll have another appointment in 2-3 weeks and we'll just continue to monitor it. 

The doctors also reduced the extra calorie packets in her milk.  They had been supplementing the milk with fortifiers to add a couple extra calories to help her gain weight.  Since she's been gaining so well, they reduced the fortifiers from two to one.  Also, Emma had been getting a bolus of caffeine every day since she was born.  This is typically done for preemies just to give them a little extra boost to help them keep breathing, etc.  They discontinued the caffeine, so no more daily cup of java for Emma!  Now she's just getting her iron supplements and multivitamins. 

Hi Daddy!

Oh no, is that what I think it is??

A Yankee hat?  *gasp!*  Daddy is a Yankees fan?!?!

Phew, I know Mommy is a Red Sox fan, now I can sleep. 

12 Weeks (and a day)!

Day 85

Everything is still moving along well for Little Miss Emma.  She has been working on bottle feeding and is starting to get the hang of it, but still needs some more practice.  Some days she does great and takes the whole bottle, and some days she only gets about 5 cc's (mL).  She is still working on the suck-swallow-breathe coordination, which is just going to take some more practice until she has it all together.  Sometimes she takes too much and starts dribbling out the sides of her mouth (she forgets to swallow) and then sometimes her heart rate starts to dip (she forgets to breathe).  It's all perfectly normal and she'll definitely get there in time. 

She's still gaining weight consistently and is now 1955g, which is 4 lbs., 5 ounces.  Her feeds were increased to 40 mL every three hours, and she's still being bottle-fed once per shift (twice per day). 

Emma is still on the cannula at around 28% (she had to go up to around 30% after those vaccinations she got, which they said can sometimes happen) so now they've been weaning her back down. 

Once Emma has her bottle feeding down consistently and is taking the bottle every feeding, she'll be ready to come home!  The doctors today suggested that it could be even before her due date (February 8th), which we're very excited about!  Since she is doing well with the bottle and that is the last hurdle she needs to get past, she may end up coming home on oxygen after all. 

One other issue that was brought up today is that Emma's blood pressure has been a little bit high lately.  It is another common issue with preemies, and definitely not too high at this point.  If it continues over the next couple days, they will probably do a renal ultrasound to make sure that her kidneys are working properly.  She has been gaining weight steadily (i.e., not too much too quickly, which could be a sign that she is retaining fluids) so it is likely that her kidneys are working just fine.  Although, they don't want her blood pressure to stay too high consistently since that causes unnecessary stress on her heart, so she may need to just be on blood pressure medication for a month or two if this continues.  Nothing too serious at this point, just another thing to keep an eye on.

sleepy...

cranky...

stretchy...

silly...

"talk to the hand, Mom!"

and sleepy again...

bottle feeding!!!

time for a good burp! 

aww, my first official drool stain.  now i really feel like a mom! 

   

Discharge Planning?!

Day 83

Emma is still going strong!  She has been doing wonderfully on the bottle!  As with everything, they have taken things slowly as far as bottle-feeding with Emma, since it takes a lot of work for her to nurse.  They started off trying the bottle once a day, and now they have moved to once per shift (every 12 hours).  She is doing great!  Her first try, she took 20 mL; her second try, she took 30 mL; and last night she took the whole bottle (35 mL)!  The doctors and nurses have been very happy with this progress.  They'll continue to increase the frequency of her bottle-feedings from once per shift to every other feeding to every feeding.  We're just so thrilled!  Emma is still gaining weight and is up to 1855g, which is almost 4 lbs., 2 oz.  She is also 17 inches long!!!  Compared with 11.6" when she was born, that is a huge amount of progress! 

Emma is still on the nasal cannula and doing very well.  She's been hanging out around 25% oxygen which is perfectly fine.  We had been expecting that Emma would still come home on oxygen (as is the case with many preemies and babies with respiratory disease), but the doctors yesterday said that they didn't think she would need it! 

One of the most encouraging signs we've had this week is that we got a call from Emma's case manager wanting to start working on discharge planning!!!!!!  Emma still has some time before her actual discharge, but the process is getting started!!  We'll need to take an infant CPR class and make sure we have a pediatrician all lined up and a whole list of other items, but we could not be happier.  We're still planning on another month or so until she actually comes home.  They will not set any specific date for her homecoming; it will remain a day-to-day analysis until they give the final approval for her to be discharged.  I've heard from other moms of preemies that this is one of the most frustrating parts; every day you think could be "the day" and it keeps getting pushed back.  At this point, we'll take that frustration if it means she's almost ready to be home! 

One piece of not-so-great news is that we did get the final results of Emma's vision test and it looks like she does have some mild ROP (retinopathy of prematurity).  It is stage 1, zone 2, which means it's not very serious at this point.  The stage refers to the severity, and the zone refers to the location in her eye.  Research says that stage 1 means "Mildly abnormal blood vessel growth. Many children who develop stage I improve with no treatment and eventually develop normal vision. The disease resolves on its own without further progression."  She will have a follow-up appointment with a retina specialist in a week or two and we'll continue to monitor this going forward.  Nothing to worry about too much at this point. 

Overall, lots of exciting news!  More pictures will be coming soon, I promise...

Let the Good Times Roll!

Day 81

Emma has continued to do amazingly well.  Yesterday she was moved onto the nasal cannula and is doing great!  Her oxygen level is about 22% right now (she just wants that extra 1% above room air!) which is just fantastic.  She has been doing great in her crib and enjoys checking out her new surroundings.  She got her first set of vaccinations last night and was a brave little girl.  The vaccines are administered at around 2 months of age, regardless of whether the baby was premature or not.  Since Emma was sick when she was 2 months old, they held off a little bit until now.  We are still waiting to get the final results of her latest eye exam but from what we've heard, the test was still somewhat inconclusive since she's still so young.  Although she may have some damage from the prematurity and high oxygen levels she had sometimes required, she definitely still reacts to lights and cameras and looks at people and new things.  So it certainly seems that she can see, and it's possible that there is no damage, or just minimal issues that could resolve itself.  We are not overly concerned at this point. 

Emma has been doing well with her feeds and is now getting 35 mL every 3 hours.  She is up to 4 lbs., 1 ounce now.  She seems to be showing some very slight signs of reflux (just getting a little fussy during/after the feedings and some slight desats) but overall she's doing great.  And today they are likely going to try bottle feeding her!!!  We are just so excited about all these wonderful changes - every day is a new adventure!!

Breaking News! (updated)

Day 79

Emma has been moved into a crib!!!!!  She seems to be doing fine so far, just looking around and making "funny faces" about her new surroundings.  We can't wait to see her tonight (and take lots of pictures).

Emma is getting another vision test today, and she is also due for some vaccinations which she'll probably get tomorrow.  They are going to leave her on the CPAP until these two things are all done just so they don't stress her out too much. 

So many exciting changes!