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. 

Feeling Better??

Day 59

Emma had a little bit better day today than yesterday.  She seems to be stable again although there have not really been any significant improvements; they actually went up a little bit on the settings of her ventilator.  However, she did seem to be acting more like her old self tonight.  Even though she has generally stayed pretty active and alert throughout this ordeal, she hasn't really been feisty like she usually is.  But tonight, she was definitely feisty!  The nurse tried to tuck her in, and we all know how Emma feels about that.

Hmm, what should I do about this?

I know!  I'm going to cause some trouble!

I can't believe that nurse tried to tuck me in.  I'll show her. 

First, I need to suck my thumb.

Next, maybe I'll see if I can get this tube out. 

Nope, that's stuck on pretty good.  Time for my escape!

First leg out! 

Oh no!  My other leg is stuck!

Fine, I'll just hang out with one leg in the air for awhile.

Boy, that's tiring.

Yes!  Got both feet out!!  

Why do they keep putting the blanket on me?!

Wahhh!!

Phew!  I sure showed them.  Now I need a nap! 

Continued Struggles

Day 58

Unfortunately Emma's struggles are continuing.  On Sunday, we spoke with the doctors and they were concerned that Emma was not responding to the antibiotics as they had expected her to.  While her bloodwork had shown some slight signs of improvement, they had not been able to wean her down on her high ventilator settings.  Her chest x-rays were also still showing the pneumonia in both lungs.  They took a sample of the secretions from her throat and sent those to be cultured.  The preliminary results did show that she had an infection in those secretions, but it should have been covered by the antibiotics she is already on. 

Last night however, her blood gases started getting worse and she was desaturating much worse.  Therefore, she was put onto a new ventilator to see if that would stabilize her - so she is now on a jet ventilator instead of the oscillator, but it is pretty similar and still provides a high frequency of "breaths" to keep her lungs constantly open.  It took awhile to get the right settings but eventually she settled down and was satting better, but she has been on 100% oxygen all day.  After all the changes she went through last night and this morning, her heart rate was very high and she was given a mild sedative to settle her down.  It seemed to help, but it was still worrisome to see her not acting like her normal self.  Later in the morning, the sedative started wearing off and she was getting back to being Emma and being active and alert.  As of tonight, she is continuing to desaturate and her settings had to be increased on the jet ventilator.  She is still unstable and needing exceedingly high levels of support.

What should have been a seven day course of antibiotics has been extended to ten days, and a new antibiotic has been added, along with some nebulizer treatments.  She had another echocardiogram this morning to see if that hole in her heart may have opened or if she had any signs of pulmonary hypertension - both of these were negative which we are happy about. 

Emma is still tolerating her feeds - she is at 8 mL/hour now, and is up to 1270 grams, which is 2 lbs, 13 oz.  She did have some fluid in her lungs and was looking puffy, so she was given some more Lasix to help flush out the fluids. 

We are hoping that the additional antibiotics and other treatments will start to help Emma, but she has a long way to go and is still very unstable. 

Status Quo

Day 56

Emma has maintained the status quo lately.  She has not really started improving yet but she still is not getting any sicker either.  The doctors have determined that she has pneumonia which has led to all of her problems.  She was more susceptible to this since she has a lot of mucus and secretions in her throat and bacteria can start growing there easily.  So she will continue on her course of antibiotics and hopefully start improving soon.  They have made very minor reductions in the settings on the oscillator, but again, they are taking things slow and not pushing her.  She is still active and alert and nice and pink, so she is not acting sick other than the high level of ventilation support she is requiring. 

Emma has still been gaining a lot of weight.  She gained 90 grams and is now up to 1230, which is 2 lbs, 11 ounces!!  She is definitely plumping up, and it looked she had a second or third chin today!  =)  The doctors again made sure that her weight gain isn't the result of her retaining fluids, and it's not - she's just growing! 

We are relieved to have an explanation as to why Emma started to go downhill so rapidly, but it's upsetting that she is sick.  The doctors said that while it is normal to go back on forth on the ventilator, having to go on the oscillator at such high settings meant that there had to be something else going on with her.  Hopefully the antibiotics will kick in soon and Emma will start improving. 

Update

Day 54

Emma has stabilized since yesterday.  She is not getting much worse but has not started to improve very much either.  She is on basically the same settings on her oscillator as she was yesterday, which is a very high level of support.  Their current plan is to take things very slowly with her and not push her too quickly like they had been up to this point.  Her blood gases have been fine but they have not tried weaning her down on the support yet.  The doctors initially thought she would be on the oscillator until tomorrow, but we'll see how things progress. 

As of right now, it looks like it is not an infection.  They did a blood culture, and they basically watch it to see if anything starts growing in it.  It usually takes around 48 hours for things to start growing, but so far there is nothing yet.  So it seems this is just mechanical and a result of Emma being small and tired.  Yesterday she was much more active and alert, whereas on Tuesday she was very pale and tired and not her usual Emma self.  Yesterday she was back to kicking the nurses and turning her head over (towards the pillow, while intubated - definitely gave her nurse and her Mom a few extra gray hairs!) so hopefully she is starting to feel a little better. We are hoping that if she is indeed feeling better it will start to be reflected in her bloodwork, because right now things are pretty much the same.  She is still getting the IV antibiotics until the final results come back on the culture. 

Emma's glucose levels have started to come down a little bit but they are still pretty high - nowhere near as high as they were though.  Her hermatocrit levels are very low - likely due to the fact that they have been doing numerous blood draws to run labs and blood gases, so she is getting another transfusion today. 

Emma has still been gaining weight too.  The night before last her weight increased by 70 grams up to 1100 (now she's over double her birth weight), but a lot of that was probably due to the tubing from the vent; that was the first time she was weighed after coming off the SiPAP.  Last night she gained another 40 so right now she's at 1140 grams, which is 2 1/2 pounds.  Her feeds were increased to 7 mL/hour and she is doing pretty well with them. 

We wanted to thank everyone for all the love and support through this difficult time.  Emma has been sliding downhill for a couple days, and is now at the bottom of a big mountain that she has to climb back up, but she has a lot of people that are cheering for her and praying for her and there to support her every step of the way.  We are all very appreciative of your kind thoughts and prayers.  We'll keep you posted.

Bad to Worse

Day 53

Emma has continued to struggle these last few days.  She was moved from the ventilator to what's called an oscillating ventilator that doesn't even allow her to breathe regularly, but provides constant rapid pressure to keep her lungs continously opened.  She has also been at very high oxygen levels (up to 100%), so she is requiring very very high levels of support.  She has had numerous chest x-rays that have shown a part of her lung had collapsed.  It's possible that this had occurred initially and they had kept going up and up and her pressure and her support but basically staying a step behind her lungs.  It looks as if part of her lung had reinflated, but there is a remaining piece that they are not sure if it is still a partial collapse or an infection.  They did blood culture to test for infection, but have started her on IV antibiotics as a precaution.  Her glucose levels have been through the roof, which we are told is a natural response to stress by the body.  If it continues to stay exceedingly high, they may start her on an insulin drip. 

This has definitely the worst time Emma has gone through yet.  Even in the beginning, she had never had to be on the oscillator and require that much support.  Please continue to pray for Emma. 

Back to Basics

Day 52

Well, unfortunately we have more bad news to report.  Emma had to be reintubated late last night.  She had seemed to be improving later in the day, but we received a call at midnight last night that she needed to go back on the ventilator.  She was just getting more tired and had frequent de-sats and bradys.  She has been doing okay on it, but it hasn't really turned things around for her.  Her blood gas results are getting a little better but still not great, and her oxygen level is still somewhat high.  Hopefully she just needs some time to rest and adjust and get back on track. 

We have spoken with doctors and nurses about this and they all stress the message that this is not uncommon and she is still doing well in the big picture.  We are trying to stay positive and strong because we know Emma is a fighter.  She has continued to be active and alert and is not showing any signs of infection or anything other than just needing more support. 

Her feeds were increased yesterday to 6.5 mL/hour and she gained another 10 grams and is now 1030 (still 2 lbs., 4 oz.).  She even graduated to the next size up in diapers!  She's still got some room to grow in them. 

I know some of the pictures are dark but we try to keep the lights dim in the room and we don't use the flash.  Gotta protect her little peepers! 

Last pictures of her with the SiPAP for awhile =(

She wiggles herself to the end of her little bed and then hangs out like this:

Square One

Day 51

Emma has been having some rough days unfortunately.  She has been getting a little bit worse lately.  The rate on her SiPAP had to be increased and she is requiring much higher oxygen levels.  She is de-satting frequently and severely, with also some apneic episodes when her respiratory rate drops low.  Her glucose levels are also very high again.  Her lungs sound clear and another chest X-ray was done and looked clear, but she was given a dose of Lasix to flush fluids out to see if that helps.  They are meeting today and deciding whether to intubate her again. 

She gained weight last night and is up to 1020 grams (finally hit the kilo mark!) but the Lasix often causes her to lose a little weight, so she may drop down some tonight. 

It feels almost like we are back to where we started from.  It is very frustrating and discouraging and sometimes I wonder if Emma will end up walking out of the NICU at this rate.  We are told that this is all very standard as far as Emma's progression and ups and downs, but it is difficult to see the light at the end of the tunnel when we keep moving backwards.  Hopefully better days are to come.

Monkeys on the Loose

Day 48

Emma has been holding steady these last few days.  There really have not been any significant changes to her settings - she is still on the SiPAP at about the same oxygen level and no changes to her feeds either.  We're just waiting patiently for our peanut to keep on growing!  She gained another 10 grams so she's up to 980 grams - slowly creeping up on quadruple digits! 

When we got to the hospital, we noticed Curious had been handcuffed to Emma's isolette.  Now, you'll remember that Curious was supposed to be keeping an eye on Miss Emma, but it seems as if they have joined forces and were trying to make a break for it together.  The nurses have made sure Curious and Emma are going to stay put for awhile longer.  Naughty little monkeys!!!