Lugubrious

July 23, 2012

Brief update.  Evalyn is over 5 pounds and Lillian is at 4 pounds 9 oz.  At this point weight is not what would keep them from coming home.  Lillian is struggling with bottle feeding.  Evalyn is doing better but only at 3 feedings a day.  They need to be doing all of their feeding (8 per day) from bottle or breast before they can come home.  The doctors have also had to increase their diuretic.  Their breathing was too rapid which indicates too much fluid in the lungs.

At this point the scary stuff is over.  The girls will be fine, we just want them to come home.  On my way into the office this morning there was a story on people who help sick children understand and cope with what's going on around them.  I can't remember their title, but that's irrelevant anyway.  They described a boy with leukemia as having a feeding tube in his nose.  I started tearing up and just about had to pull over.  It was one of those moments where the stress of the situation bubbled up.

It feels like I have twin girls in theory only.  It's been over 9 weeks since the girls were born and we've never seen them without tape on their face.  Heidi and I have regular conversations with each other and the nurses where we wonder what they look like and how much they look like each other, we don't know yet.  I've given Evalyn a bottle once. We have to ask permission before we can hold them.  In every way that matters Dawson is still the youngest child.  Jackson and Preston are barely aware that they have two sisters. I hate the empty crib in our room, but most of all I HATE having no idea of when they'll come home.

As unpleasant as that is it could be so much worse.  Our girls have only flirted with the really scary health stuff.  The staff at the NICU are wonderful and make our visits enjoyable.  We have had so much help from friends and family that have made it possible for Heidi to spend 3+ hours at the hospital every day.  We've received a lot of strength from our Heavenly Father and the prayers of others.

We are aware of and terrified by the stress that will come with full time care of our girls.  But we're ready to dance with a different devil.

This Took a Long Time to Upload Edition

Hi All,

I'm going to keep this part short.  The girls are doing well.  They are both over 4 pounds.  Surprisingly Lillian now has an ounce or two over Evalyn.

The weight gain is accelerating.  Yesterday Evalyn put on 150 grams in one day!  Of course she was a bit stopped up at the time.

Evalyn has moved off of the Vapotherm oxygen machine that used pressure to help her breathing, she still has a nasal cannula but only receiving supplemental oxygen and does not require the pressure.

Heidi is experiencing a bit of a panic with getting everything ready for the girls to come home which could be in a couple weeks, but they still have to hit the following milestones:

• Maintain their body temperature; done
• Able to get all of their caloric needs from bottle or breast.
• Evalyn: Making good progress, increasing the number of feedings from a bottle
• Lillian:  Progress is slower with the occasional slip
• A week with no apneas and must be off caffeine:  Both are making moderate progress, still have a way to go here

The girls progress can come in leaps, just like Lillian's weight gain, so we are hoping for some leaps and getting things ready at home.

Now that I've covered that we asked a friend of ours Tristan Whitman to come and take pictures of the girls.  He's a cinematographer/director of photography as well as an Associate Professor of Cinema Practice at USC.  He's got some skills with the camera we lack.  The pictures can be a bit on the darkish side because of low lights in the NICU and it's not kind to use a flash on the girls.

If you click on any of the photos it will open a slide show with larger images.

Two Months in the NICU

July 10, 2012

Thursday will mark 8 weeks in the NICU for our girls.  They continue to make strong progress.  Here is what has been happening since my last post:

Evalyn

Evalyn is 5 grams shy of four pounds.  She's out of the isolette and in an open bed.  She is still getting oxygen but the levels are pretty low.  She's also eating from a bottle!  She makes quick work of the bottle, finishing 32 ccs in under 15 minutes.  Both Evalyn and Lillian are getting pretty anemic and are awaiting another blood transfusion.  They'll receive more of my blood probably on Thursday.

Evalyn Sleeping

Lillian

Lillian is trailing Evalyn's weight by about 3 oz.  Her lungs continue to be stronger.  She also got out of the isolette, but only for a day.  She's still too small to maintain her body temperature on her own.  She got off oxygen entirely for a couple of days, but had to go back on at least partially due to the anemia.  She was also a bit slower to drink an entire bottle, but she was able to drink an entire bottle for the first time today.

A very alert Lillian

Bath time with Lillian

The nurses put us on notice today.  They told us we had to have everything ready for the girls to come home two weeks from now.  That's far from a sure thing, there is a lot they have to do before they are able to come home, but it could be that soon.  They also won't necessarily come home at the same time.

We took Jackson and Preston to see the girls again.  They were excited about it.  Preston got bored really quickly, but was excited to hold their hands.  Jackson got to help take their temperature.

Jackson and Lillian

That's not a grown up hand.  That's Jackson holding Lillian's hand

The Total Health Index* (*Title is misleading, seriously)

July 3, 2013

Work has been going crazy for me lately making it hard to keep the blog up to date.  2013 planning and new senior management at VW make for lots of arm waving and fire drills.  But I don't suppose you folks are interested in that.

I am still afflicted with a persistent cough that is keeping me out of the NICU so I am reporting what is relayed to me by Heidi.  Consequently I cannot be held responsible for any inaccuracies in my report.  Even if I get what she told me wrong, I'm going to blame it on poor communication.  That's right, I've got Heidi next to the curb with my hands in her back just waiting to push her under the next passing bus. . . Chivalry.

Here's the big news the girls are both over 3 pounds now.  Evalyn, the big sister is weighing in at a portly 3lbs. 7oz.  Lillian is a svelte 3lbs. 1oz.  Really we'd like Lillian to put on more weight.  Interestingly though Lillian's lungs are doing better than Evalyn's, so I suppose when you weigh both of these measures their Total Health Indexes (something I totally made up right now) are roughly equivalent.  Sounds good right?  I thought so.


Our friends from church and school continue to step up and help out with my three sons allowing Heidi to spend a lot of time at the hospital with the girls.  I cannot overstate just how big a deal this is for us.  I don't know how we'd manage to spend time with the girls without this help.

As awesome a writer as I am, I'll let you get on to the real reason people check out the blog; pictures of Evalyn and Lillian.

Evalyn, Lillian and Mom getting some snuggle time

Holding hands

Holding hands up close and artsy

Evalyn lives the contemplative life, Aristotle would be proud

Lillian's arm is actually looking a bit cubby

Look how far she's come; this was taken a couple of weeks after birth

Enjoy your 4th of July.