I begged Craig since the girls came home to update the blog, but apparently the lack of sleep hit him quite hard and it never got done. So now I (Heidi) will give you an update from their return home to current day. 

Evalyn Clara came home August 15th, 2012.  

Lillian Charlotte followed shortly after on August 21, 2012 (my actual due date)

 Grandparents holding the girls for the first time

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The boys were so excited.  All except for our 2 1/2yr old.  He kept saying, "What?! Another baby?!!!"  He was so confused as he had never seen the girls before.  Poor guy.  Talk about being displaced!

My boys started school the next day.  Somehow I knew everything would happen at once!

Evalyn was on oxygen and an apnea monitor until November. It was such a happy day when she came off.

  We so were lucky to have both families travel to California to see the girls be blessed at our church and spend Thanksgiving with us. 

We had a wonderful Christmas 

One month later a county sewer line broke and our kitchen, our two downstairs bathrooms and our back patio were filled with sewage.  Let's just say it's been an extremely trying time.  We moved out for about 6 weeks then moved back in while the house was under construction.  Luckily the kitchen was in fully functioning order in time for the girls 1st Birthday party.

  

 Our sweet hula dancers

 Picture timeline of the girls 1st year

 Not quite sure what the big deal is

 Their feet never touched the ground

One of our wonderful NICU nurses had told us how it is Hawaiian tradition to have a Luau for the first birthday to celebrate the survival of  the 1st year of life.  We found this very fitting for our girls.  It was wonderful to celebrate with so many of our friends and family who had been there to help us.  Even some our fabulous NICU nurses showed up after their long shift at the hospital!

The girls are now almost 18 months old!  Time has flown and the NICU almost seems like another lifetime.  Don't get me wrong, I still think about it and it's still very painful to look back on the pictures.  Thankfully our girls are thriving and happy.  They are crawling, climbing and getting into everything!  They have great help from physical therapy, occupational therapy and developmental specialists.  Evalyn takes a few steps at a time and Lillian has taken her 1st step.  We know that we have some challenges ahead and are still praying that they can keep overcoming these challenges.  They have come so far and beaten so many odds thanks to the prayers of many and our Heavenly Father's blessings.

Thank you for following our story of success and for all your support and prayers! 

   Evalyn and Lillian at 15 months old  

   

Lillian and Evalyn at nearly 18months

The Power of Kindness

August 6, 2012

Last time I posted I was feeling pretty bummed.  The folks at worked proved they were awesome by unhesitatingly giving me a day off to go spend some time with my girls.  That single day went a long way to making me feel better.

A respite from work was nice as was time with the girls, but I also need to give credit to the nurses who have been invaluable in helping to assuage our stress and sadness.  The NICU could be scary, clinical and cold, but amazingly these nurses have made it a refuge for us.  When we go to the NICU we are met by kind and caring friends that take wonderful care of our daughters.  In a way they help take care of us as well.

One of the amazing staff feeding Lillian.  If you're wondering about the gloves our girls are filthy.

 As the girls progress and the prospect of taking them home seems increasingly real, we’re starting to get nervous about full time responsibility for our girls.  But we have to admit we’re also going to miss the staff.

Now about that progress . . . Evalyn is over 6 pounds and Lillian is almost there.  The feeding is coming along and they were requiring less oxygen.  As I mentioned in the last post the rate of progress had slowed and just as it got to me Heidi had her bummer moment on Sunday.  I encouraged her to take the day and spend it with the girls.  Every once in a while I get something right because that turned out to be a pivotal day.

When Heidi showed up to the NICU they had just finished removing their nasal cannula and feeding tubes.  She was able to spend the next 6 hours with the girls and an unobstructed view of their faces!  They are adorable, but don’t take my word for it I have proof.

I'd label the photos, but seriously I can't really tell which is which most of the time.

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.