The Tiniest Fashion Show

June 24, 2012

So I've gotten pretty bad with the updates lately.  Honestly there hasn't been that much to write about . . . I like that.  The girls have made steady progress.  They are putting on weight and ditching the mole rat look.  They are even starting to get little butt cheeks.  Evalyn just broke 3 pounds!

It's hard to believe they've been in the NICU for over 5 weeks.  Harder still to believe that they are probably only halfway through their stay.

Yesterday friends of ours from church threw Heidi a baby shower.  Although I would have loved to be there (SARCASM), I decided to stay home and dig up the backyard, it was awesome.  I'm sure you all really want to hear about that but too bad.  My point is that all I have to go on regarding the shower is Heidi's word and she said it was great . . . except the stripper dude was too hairy (do I even have to say I'm kidding?).  All the ladies at the shower made little headbands of various sizes for our girls.  We took those headbands and a frilly pink skirt to the NICU and played a little dress up with the girls.  We couldn't try all the headbands on today, the girls can only stand so much excitement, but they will all get their share of head time.  Enjoy the photo shoot below and a big thank you to all who participated in the shower.

Evalyn's Shoot

"Pinky up is classy"

Striking a pose

"I feel so pretty"

 Lillian's Shoot

"Wha . . . I was having the weirdest dream . . ."

"Let's get this started"

"I need a pink skirt!"

"Oh my gosh! This is really happening!"

"All is well"

"You can photo shop out the nasal cannula right?" 

Backlog of Blogs

I've had a really off week on the updates.  I got sick and haven't been able to visit the girls.  Heidi has been able to go, but has to wear a mask just in case she's getting ready to get sick.  It looks like Preston is sick now and Jackson and Dawson are getting the sniffles.  This could have a really ugly effect on our visits.

The girls have shown steady growth and improvement.  Evalyn has pretty much caught up with Lillian in health.  Both remain off of a respirator receiving additional oxygen through a nasal cannula.  Evalyn's breathing seems a little rapid/labored so it is being watched.  They are both just over two and a half pounds.  

Looking at pictures from birth to now and you can see a lot of differences beyond size.

Evalyn June 16th

Lillian June 16th

Evalyn May 18th (birth)

The skin looks much healthier.  When they were born their skin was very shiny and translucent.  It's hard to capture through the incubators (actually called an isolette) but their veins were very visible through the skin.  They couldn't open their eyes yet as their eye lids hadn't separated yet.

They are more alert and looking around.  They are also more active.  Lillian managed to flip over taking her bedding with her.

They are doing more baby like things as well, for better or worse, Lillian spit up on Heidi the other day.

On a real positive note they can be held together.

Heidi has her hands full. . . for the next 18-20 years

She also has her chest full, she'll get that back much sooner

Now for the awww moment.  When Evalyn and Lillian were reunited for the first time since delivery Evalyn reached over and grabbed Lillian's hand.  Sure it's probably just a reflex, she grabs everything, but let's just go with the super cute and sweet explanation for now.

Family Resemblance

There isn't much new news to report today.  Evalyn and Lillian continue to do well.  They require less supplemental oxygen and continue to increase their calories.  They are now both over 2 pounds.  Their skin is looking a little bit better.  It is less translucent which looks a bit more healthy.

Heidi and I have been able to hold them every day.  The kangaroo care (holding skin to skin) is supposed to coincide with feedings which are well structured events.  This means Heidi can't hold both during her visit and it's going to be tough for me to get there at the right time with my work schedule.

In any case Heidi and I are pleased with their progress, but have a hard time coming to grips with them not coming home until August.

On Sunday I showed a picture of Evalyn's face plant sleep style.  Heidi and I both thought that it looked familiar, but had a hard time placing why.  We figured it out

Evalyn Face Plant Sleep  Style

Preston Advanced Face Plant Sleep Style with Added Traffic Cone

A couple of years ago while at the Point Mugu Air Show Preston got tired and needed a place to rest.  The only place he could find shade was in a traffic cone so he stuck his head inside and took a nap.  You might call this strange, I call it resourceful.  Oh, in case you were wondering the inside of a traffic cone is very dirty.

Evalyn and Lillian Updates: Now With More Hiccups (and video)

After my first attempt to hold Lillian was cut short by her recalcitrance Heidi had recommended waxing my chest in order to make it more comfortable for her.  All the nurses backed her up, not out of any real concern for the babies comfort mind you, they just really liked the idea of my suffering. . . I bring out the best in people.

Round two with Lillian had a lot riding on a successful outing.  Lillian pulled through and made her dad proud, and let me keep the hair on my chest.

No I'm not going all Magnum P.I.  that's just how Kangaroo Care works

The B&W makes it more endearing right?

Heidi was able to hold Evalyn at the same time thanks to a friend who put her physical and mental health at risk to come and watch our boys while we went to the hospital.

Lillian is going to grow into all that skin

Heidi and I kangarooing, check out the deluxe accommodations

Heidi spent more time with Lillian today and was able to get in some practice nursing.  She did very well, but it will be quite some time before she can get that done for real.

Both Evalyn and Lillian have been able to increase their caloric intake and we hope to see them put on weight at an accelerated rate.  Their skin is looking more opaque already.

The nurses keep telling us how active the girls are.  They will pick up their heads to switch sides, just about crawl out of their beds and are always yanking on their various hoses.  On top of all her moving Evalyn has adopted a unique sleeping style.

Face plant sleep style

The face plant works for now with her oxygen, but we figure she'll have to find new ways to sleep comfortably once she's off the oxygen entirely.

We are getting to hear both of the girls more.  Lillian cooed a bit yesterday and I finally heard Evalyn cry today.  I also got to hear another sound

Either my girl swallowed a duck or she's got a serious case of the hiccups.

Kangaroo Time

Evalyn has made a spectacular turn around.  Just a few days ago Evalyn was on the oscillatory ventilator at high settings and generally looking pretty sick.  Today she has been extubated and ready to come off the CPAP to the nasal cannula.  In addition to that she has been able to tolerate her feedings well and is now being fed nearly the same as Lillian.

Here's our theory Evalyn saw her little sister getting all that snuggle time with mom and said no way is she getting mom all to herself.  So she set some goals and it worked.  Heidi was able to hold Evalyn today and I have proof.

Let's have a closer look at that my little girl

Right now Kangaroo Care is limited to once per day.  Of course Kangaroo priority goes to mom, but now that we've got two girls in need of some snuggle time I got to hold Lillian today.

Clearly there won't be any fawning over how great I look, but honestly I'm about as photogenic as Elanor Roosevelt.

Apparently Lillian didn't care for our photo shoot gone awry, she is used to working with a real pro, and her oxygen levels started to drop.  Consequently we had to return her to the incubator after only 15 minutes.  I'm trying not to take it personally, but I didn't save the last Popsicle in the freezer for her either.

Thanks for reading

I Could Remember My Pains No More

Before I do any talking take a good look at these pictures

Let's hold off on the girls' progress for a moment and look at that smile on Heidi's face.

It's been many months since I've seen her smile like that.  The strain of this pregnancy and the risks have weighed heavily on her, us, and they are far from over but the camera has immortalized this beautiful joyful moment.

It's amazing to me how she could put away everything going on and live in that moment.  I can't do that.

On top of everything else she is simply stunning . . . unspeakably gorgeous.  I don't know that I've ever seen her look more beautiful than two and a half weeks after an emergency c-section.


This is the Kangaroo Care I spoke of earlier.  They took Lillian and basically stuffed her down Heidi's shirt so they had skin on skin contact.  Lillian settled right in and relaxed.  It's hard to see much of Lillian here because they have four blankets, two of which were heated, to make sure her body temperature stayed up.

Lillian is doing well in general, they are talking of moving her off of the CPAP and on to just the nasal cannula.

Evalyn may be getting extubated tomorrow.  She would then go on to the CPAP like Lillian.  She is increasing her feedings as well.

Honestly I don't have much more to say tonight, just look at those pictures.

Baby Kaizen

My dad used to tell me "I'm better today than I was yesterday, but not as good as I'll be tomorrow". We're hopeful that Evalyn and Lillian have picked up Kaizen as their new philosophy as they've made steady progress over the last few days

Lillian has been able to stay on the CPAP and is doing well with her feedings and having her IV out.  The really big news here is that Heidi is going to be able to hold her!  We'll be starting Kangaroo Care where we hold her to our skin.  Heidi is going to start, but I will be able to do this as well.

Evalyn is stable on the respirator and is coming off of the sedatives they had to put her on for the oscillatory ventilator.  The nurses told me that she may be able to move to the CPAP soon.  She is pretty squirmy and always trying to work her way out of her little bed.  She also grabs anything she can get her hands on, including her intubation tube.  That's not really a problem until she starts pulling on it as if she's trying to take it out.

I gave her my finger to hold on to instead.  She has got an impressive grip.  I also got to pick her up while the nurses changed her bed.  She fit neatly across my two palms.  It was extra nice that she seemed to relax a bit while I held her.

Slow and steady progress may not make for an exciting read . . . but right now I'm liking boring.  Tomorrow should be more exciting in a good way.  I hope to have pictures of Heidi holding Lillian to share.

In case you haven't noticed, I think Heidi has settled on the shade of pink used for the blog.

We Get to Take Some Good With the Bad

As you are well aware our girls have had a bit of a rough time lately.  Today we got to see some solid progress and it feels really good.

Lillian pulled through a second day off the respirator using a CPAP.  She had her IV removed and is getting all of her calories from Mom's milk.  She is gaining weight consistently 28 grams from yesterday and is getting close to two pounds, I know pretty big.

While the nurse was preparing to remove Lillian's IV she swabbed her arm with some water to loosen up the tape.  Lillian did not like that at all.  So she did what all babies do when they aren't happy . . . she cried and it was a sweet as anything you've ever heard.  Sure that sounds kind of crazy, but both Lillian and Evalyn have been intubated pretty much the entire time since they were born so this was the first time Heidi got to hear her cry.

Lillian all swaddled up (they used a cloth diaper)

While I was visiting she opened her eyes for a long time and held my finger while she got a diaper change.  She may be tiny but she can stink it up in a big way!

Evalyn has been taken off the oscillatory ventilator and moved to a less intensive ventilator.  Her breathing appears to be more stable this time around so we are hopeful she will stay off for good.  She has been able to tolerate her feedings well so they are increasing the amount of milk she receives on a regular basis.  If she continues making progress we may be able to avoid the steroids altogether.

Evalyn holding her ventilator tube

Heidi got to change her diaper and take her temperature today.  She was pretty excited about that.  I'm hoping that she holds on to that feeling for a long time.

It's wonderful to see the girls making progress and hope and pray that it continues.  It's been over two weeks now and we have yet to hold our girls and maybe another 10 weeks until they are able to come home.

A Moral Dilemma

6/3/2012

Lillian has been making pretty steady progress.  She has been extubated and taken off the respirator.  She is currently getting additional oxygen through continuous positive airway pressure (CPAP).  She has been tolerating her feedings and is close to receiving all of her calories from feedings.  At the current rate she will be able to have her IV removed tonight.

Lillian and her CPAP. Don't worry her nose won't stay like that.

As for Evalyn let’s start with some good news.  Her PDA is closed and shows no signs of reopening.  Evalyn has been largely stable on the oscillatory ventilator.  She has been increasing her feedings as well and making some minor improvements.  However, she has been on the machine since Thursday and the ventilators can cause some harm to their lungs, of course the harm is much less severe than the harm done by not using them.

Mom, Dad and Evalyn during a rare moment when the incubator was open

The steroid question is the core of the moral dilemma.  We were approached about the study again for Evalyn.  Considering Lillian’s recent progress she doesn’t appear to be in need of steroids at all.  Evalyn, however is looking more like she will need steroids.

A little more background about the steroids would probably be helpful.  Steroids have long been known to speed the development of the lungs in premature infants.   However the steroid most commonly used, Dexamethasone, is also known to increase the risk of abnormal brain development.  For obvious reasons doctors are hesitant to use Dexamethasone, as are we.  Some recent research suggests that hydrocortisone can provide the benefits of Dexamethasone without the adverse effects on brain development.  The studies performed up to this point have been small so they are looking to field a large scale study (800 participants). 

So what’s the moral dilemma?  If we enter Evalyn in the study she will receive either the Hydrocortisone or a placebo.  If the treatment doesn’t work and she doesn’t get better on her own we will have to go to the Dexamethasone.  The problem is there is only a 50/50 chance that she will receive the Hydrocortisone.  As an alternative we can skip the experiment and give her the Hydrocortisone anyway.  While the research on the Hydrocortisone is limited it is suggestive enough to encourage the medical community to move to large scale trials.  There is little disagreement on the potential harm related to Dexamethasone.  While I really want to participate in the study I also really want to avoid the Dexamethasone.  The Hydrocortisone could make this possible, but if we enter the study we have to be willing to take the chance that Evalyn won’t get it.

Ultimately we decided not to enter Evalyn in the study.  We are going to give her a little time to get better on her own.  If that isn’t happening we will go with the Hydrocortisone followed by the Dexamethasone only if absolutely necessary.

You’d think this simple plan of action would be easy to implement.  Unfortunately we are finding that nothing is simple with girls of this gestational age.  The slow rate of Evalyn’s progress isn’t a clear indicator that she is making the progress necessary to get off the respirator on her own, but it also might suggest that the steroids aren’t necessary.  Waiting might seem to be a good idea if it weren’t also known that there is a certain amount of harm done by the respirators themselves.  It seems that there isn’t enough known to establish any clear guidelines.  The doctors have even told us that if we want to start or wait they will defer to us.  If they have a tough time making that decision how in the world are we supposed to do it?

I wish I could give you a nice clean resolution to that bit, but there just isn’t one yet.

Evalyn resting peacefully

Transfusions are common for babies this young; here Evalyn getting some of Dad's blood

In other news my parents have finally gone home after being here for just over two weeks straight.  To borrow an expression from cycling, that’s a long pull.  Believe me, my boys are going to make sure it’s a headwind.  We are grateful to them and Heidi’s parents who were here before.  We are also grateful for the meals, babysitting, prayers, readers etc.

I also managed to sneak a picture of Heidi's compression hose. It's just an ankle, but I'm taking great personal risk posting even that.

Compression hose . . . Yeah!

Thanks for reading

Weekend slacking

It was a busy weekend for us. Sorry we missed some posts. Look for tomorrow though we have a lot to write about.

Roller Coasters Suck

5/31/2012

Heidi went into the NICU this morning to find Evalyn back on the oscillatory ventilator.  Sucker punch right to the gut.  We’ve made it pretty clear that we hate this machine.  We know it’s necessary and being used for good reason, but it’s such a visceral reminder of the precarious situation they are in.  Every time Evalyn moves onto that machine we have to acknowledge that she isn’t making progress.

The Hated Oscillatory Ventilator

I told the doctor that this doesn’t look like progress to me.  He replied “it doesn’t look like progress to us either” he went on to clarify that this is typical for babies at this gestational age.

Evalyn resting

The research trial has been rendered moot.  Because the girls have been on respirators for 2 weeks they want to start them both on the steroid right away.  Had they been entered in the trial there would have only been a 25% chance that they both would have received the steroids.  I could go on about how the FDA and medical community has become excessively rigid and narrow in their research methodologies, but that is a rant for a different time and audience.

The steroids are given over a 10 day course.  The doctor said they are typically able to take them off the respirator after 5-6 days into the treatment.

Lillian appeared to be making a little progress.  The amount of oxygen she required was down a bit, getting closer to room level, but she still requires a respirator to do some of the work for her.

Lillian aka "Lilli" enjoying her body pillow

On a lighter note I have been truncating the girls’ names to Evie and Lilly.  I found out that this is VERY wrong!  The proper abbreviations are Evy and Lilli I’ll try not to put my foot in that trap again.  In addition neither of the two shades of pink I have tried are right so I guess I’ll keep plugging away on that one.  I am also being pressured to add a cutsey background graphic to the blog.  I’m taking a stand on that.  Feel free to sound off in comments, but be warned I am just as capable of disregarding your input as Heidi’s.

Thanks for reading