Keepin' on

5/30/2012

I'm a little late with this post.  I didn't get to see the girls until later last night and needed to get in bed when I got home.

A couple of housekeeping notes when I set up the blog I just set up a simple template.  Heidi rightly pointed out that the blog was in blue but should be pink.  So I changed it, now we begin the process of me trying every possible shade of pink in order to find the RIGHT pink as defined by Heidi.

Evalyn and Lillian have stabilized.  Evalyn is being weened off the sedatives.  The diuretics are working and she isn't nearly as puffy anymore.  Lillian gained 20 grams. from yesterday and it seems to be an honest weight gain, not just water retention.

They both looked very relaxed and peaceful today.  So much so we didn't want to disturb them by reaching into the incubators.

They are both still on respirators (not the really scary kind) and their oxygen levels were higher than I'd hope.  Our main concern here is Bronchopulmonary dysplasia (BPD).  The longer they are on the respirators the more likely they are to end up with BPD.  BPD isn't as big a deal as it used to be but there would likely still be some long term deficits we want to avoid.


Along those same lines the doctors have asked if we would participate in an experiment looking at the effects of a light dosage of hydrocortizone  on reducing the inflammation of the lungs in an effort to prevent BPD.  Our doctor says the risks are low, but our girls could benefit (if they receive the treatment and not placebo). 


QUIZ TIME!  Each girl has a 50% chance of receiving the drug, so what is the probability of either one of them receiving the drug?  Click on your answer to see if you are right or not.


a. 50%
b. 100%
c. 75%
d. 25%


Heidi is moving around a bit better now but still has a long way to go.  She is getting twice daily injections of blood thinners for the blood clots in her leg.  She is loving those almost as much as she is loving the compression hose she has to wear now.  Let me tell you they are HOT! I'd post some pictures but then I'd have to list my blog as containing adult content.

Quiz detailed explanation: c  The probability of either Evalyn or Lillian receiving the experimental drug is calculated by the addition rule; P(Ev or Lil)= Pev + Plil - (Pev * Plil) or .5+.5-(.5*.5).  The probability of both Evalyn and Lillian receiving the drug is the intersection of the two or .25.

Evalyn and Lillian Fact Sheet

When we started the blog we jumped right in to the moment.  I've managed to find a little time to put together a fact sheet to fill in some of the gaps folks might be wondering about.

• Evalyn Clara was born May 18th at 2:59 AM; Lillian Charlotte followed one minute later @ 3:00 AM
• Evalyn and Lillian were delivered via emergency C-section at 26 weeks (full term is 40 weeks) because Lillian was showing signs of severe distress and was no longer able to survive in utero
• Heidi's due date was August 21st
• Evalyn weighed 1lb 14oz, Lillian weighed 1lb 11oz.  Both were 13 inches long
• The girls were Monochorionic/Monoamniotic twins (aka Momo twins) a rare type of twins estimated at 1/35,000 to 1/60,000 pregnancies
• Momo pregnancies are particularly high risk due to several complication stemming from the shared placenta and amniotic sac
• The girls are expected to remain in the NICU for 10-12 weeks

Did we leave something out?  Let us know in comments and we'll do our best to add it in.

Whew . . . I think?

Evalyn was taken off of the oscillatory ventilator today and the sedatives.  We are feeling relieved to have her off that dreadful machine.  They will perform the ultrasound to look at the PDA tomorrow, but the doctor can't hear a murmur and her blood pressure and blood gases are good which indicate the hole is closed or closing.  Also the Dr. said they can do a 3^rd round of medication if needed reducing the possibility that she will require open heart surgery.

Both Evalyn and Lillian’s lungs are too “wet” so they are starting a diuretic.  The wet (inflammation related to the respirators or too much blood flow to lungs) inhibits their lung function, in Evalyn’s case too much blood flow to the lungs was causing them to collapse.  Lillian had to go back on the respirator in response.

Evalyn looked relaxed today.  At one point she was laying on her back with her mouth open and looked just like her big brother Dawson and it was adorable.

On another note Heidi has been having pain in her right calf which can be a symptom of blood clots.  She had an ultrasound performed and they found about 5 blood clots and almost admitted her to the hospital for treatment.  Fortunately they are going to treat it outpatient.  She’ll be on blood thinners for a few months and then have to take baby aspirin for the rest of her life.  I know pretty awesome right?

I went back into the office today.  The doctors and others recommended I go to work and save my leave for when the girls come home.  First day back wasn’t bad.  I’ve got some interesting projects to jump into.

I finally tracked down my camera (not phone) and pulled some pictures.

Evalyn holding Heidi's finger (cut her some slack on the busted up fingernail she just had a c-section)

Lillian and Heidi's hand.  The spot light is from theBilirubin light.  This is also why her eyes are covered.  Both the girls are off the light for the time being.

Heidi and I did want to say thanks for the comments, thoughts and prayers from our friends.  It really does mean a lot to us.

More of the same

The nurses tell us that Evalyn is doing better today.  I guess we should take the experts opinion, but to us it looks like she is pretty much the same.  I suppose that's the point.  Yesterday Evalyn's condition was deteriorating and now it has stabilized.  We still need to give her a little time for the medication to work.

This is still hard to watch.  She requires sedation so she is doesn't move much or open her eyes, unless the sedation is wearing off and then she kind of jerks sporadically. The medication also causes swelling, the puffiness might be nice if it was fat.

Evalyn will finish this round of meds tonight and get another scan tomorrow to see if the hole has closed.  If the hole has not closed sufficiently she will require surgery.  The surgery would be performed at UCLA so she would need to be flown down and back a few days later via helicopter.

The prospects of open heart surgery is terrifying.  Not only are we terrified of the short term health implications, we also worry about the little things like Evalyn having a scar that her identical twin doesn't.

Sorry if I'm being too candid here; I want to be open and also keep these entries as a journal.  But on a brighter note Lillian continues to do well.  She seemed very relaxed tonight.  She was alert and opened her eyes for the longest I've seen.  She also loves her pacifier as you can see.

Hoping to bring you better news tomorrow.

The Roller Coaster Begins

5/27/2012
They told us that we were in for a roller coaster ride with these girls.  I've tried to keep it in perspective and stay calm, but today's drop was rough.  Heidi got a call from the NICU telling us that Lillian had to be intubated again and Evalyn had to be moved to a more aggressive respirator because her lungs were collapsing.

I skipped church to go to the NICU with Heidi.  Lillian was doing well in spite of being intubated, we knew that was fairly likely at this gestational age.  This machine helping Evalyn breath is awful.  An oscillatory ventilator uses a piston to send puffs of air into her lungs.  This helps to keep the lungs inflated without doing damage to the very delicate tissues.  Because of the rapid cycling her little body vibrates like she is on a massage chair.  They have to put her on some pain medications to ease the inherit discomfort of the machine.

We had to go home but came back in the evening and the doctor was standing next to Evalyn's bed.  Evalyn's lung functioning was continuing to deteriorate and they weren't sure why.  The two most likely causes were infection or her PDA had opened back up.  This would cause too much blood to go to her lungs and inhibit the lung function.

While reviewing the x-rays with the doctor out of the blue he asked us if we were Mormon.  He grew up in Utah and did his undergrad at U of U (I'll let that slide).  He was pretty excited that I went to BYU and studied psychology at about the same time as his best friend.  This conversation came just as I was wondering how I was going to ask for some privacy so I could give Evalyn a Priesthood blessing.  Knowing that he understood something of our faith helped ease my fears that they wouldn't want me to disturb Evalyn.  He was fully supportive and I am very grateful.

The ultrasound tech got there very quickly, something that doesn't ever seem to happen in the hospital.  We were fortunate that the tech was able to get a good read in spite of the ventilator that makes this difficult.  Evalyn's PDA is back.  While this isn't great news at least the doctors know how to treat it.  They will start out with a round of medication that helps to close this.  She had already received one round earlier, needing two rounds is not uncommon. It will take about 3 days to administer the medication and reassess the PDA.  If this treatment doesn't work they will need to fly her to UCLA where they would clamp the hole.

We are very hopeful that the medication will work.  If you're the praying type she can really use your prayers.  If you're not the praying type . . . you should be ;-)

Introduction

We aren't exactly the blogging types.  I mean we don't have much to say worth reading about . . . I guess until now.  We are very grateful to have so many friends that care about Evalyn and Lillian, but at times it is hard to share their progress with so many people, especially on bad days.

We will do our best to provide daily updates and answer all the relevant questions. But because writing is hard and finding spare time is harder you will have to overlook typos, bad grammar and lackluster writing. If we miss something you are curious about feel free to ask in comments or send an email.