Out of ICU

Lucy's RSV and pneumonia are clearly up nicely.  She is on a much lower flow of oxygen (4 - 6 liters, vs the 10 - 15 from yesterday) and the oxygen level has been turned down to 21("room air")- 35 throughout the day, versus the 50 - 60 from yesterday.  So, we are feeling very happy about that!

However, her GI system continues to be slow to get started.  After 36 hours on a slow drip of the mix they give to people before having a colonoscopy, things are finally slowing starting to move, but she is still throwing up every hour or so.  It's a tough balance to give her enough to get her intestines moving and not giving her so much that her stomach just rejects it and she throws up.  They have also made several attempts to get things going from the other end...enough said.

Because her oxygen needs have gone down so significantly, she was able to move out of the ICU down to a regular room today...I was a little sad about leaving the awesome ICU nurses and one of my favorite doctors to date...but it IS a step in the right direction for Lucy, so that is what counts.  She has definitely pepped up a little and even asked me to tell her a story today, one of her favorite things from mom or dad.

As always, we've had many friends, family, and awesome nanny and neighbors step up to help with errands, laundry, watching Ruby, and providing food for us.  SO THANKFUL!  Without all this help, we would be lost, with a house fill of dirty clothes, nothing to eat in the fridge and a much less-cuddled baby.

Thank you for your continued support, prayers and messages - we so appreciate them!

Ending 2016 and Beginning 2017...In the Hospital

We did not have a very good end to 2016.  Lucy contracted RSV (and possible pneumonia - we are waiting for the cultures to come back) and was admitted to the hospital on Friday night (12/30).  She is in the Pediatric ICU for now.

So far, she is being treated for a respiratory infection with steroids, antibiotics and a LOT of breathing support (oxygen and nebulizers).  Of course, her little GI system is shutting down again, so she has had a lot of throwing up since Friday during the day.  She's gotten the standard NG tube to her stomach with a low dose laxative going into it, an enema and basically no food or drink by mouth since we've gotten here.  While her lungs are slowly improving, her energy level is not so the docs are doing more tests tonight to understand if she needs a different type of breathing treatment to help with CO2 levels.   She is pretty lethargic and is sleeping most of the day away (after being awake most of last night throwing up - not a fun way to ring in the new year.  I could here the midnight fireworks going off as I was holding a puke bucket for her in her hospital room!).  As of now, we have no idea when she'll turn the corner, or even a really clear picture of how and when she will improve.

Please pray for healing for miss Lucy...we miss our ray of sunshine so much; it's so difficult to see her like this (again!).

When we decided to have another baby, one of my main concerns is who would take care of the baby when I had to be at the hospital with Lucy - because I knew it was inevitable that she would eventually be back in the hospital.  That part is a huge struggle for me - not being able to be with baby Ruby in the middle of the night and barely seeing her during the day...also she is battling a cold / ear infection so is pretty miserable herself.  It's also been hard to let go of being in a little hospital bubble with Lucy and having to leave her at the hospital with Jason or my parents so I can take care of Ruby and myself for a few hours.  So, prayers for all of us as we get through this tough emotional and physical challenge.

We choose to believe in God's greater plan and to continue to pray through the challenges and will keep you updated on her progress.  Thank you so much for your calls, texts and messages - they mean the world to us!

Jingle Bells and "Bear" Bottoms

We got a little goofy with our Christmas card this year. All four of us in "bear bottom" onesie pajamas. The adults (me and sometimes Jason) have the real deal "trap door" in the back.

Lucy loves sleeping in it even when it's not time for a card!

Merry Christmas and Happy Holidays!

Jason stealing the spotlight, yet again. 

Thanksgiving, Eye Doctor and Dentist

I literally cannot resist dressing them alike whenever possible!

It's almost Christmas (and I'm just catching up on a Thanksgiving blog!).  We are doing very well in our household...watching the girls grow up and enjoy each other's company!  We had the pleasure of hosting my family for Thanksgiving, which was super fun...I can't believe how much the kiddos have grown up since we introduced Lucy to them on Thanksgiving 4 years ago!!

Thanksgiving Kids Table #1

Thanksgiving Kid's Table #2

Throwback to Thanksgiving, 2012

Lucy has had a few colds from preschool this year, but nothing major yet that has really kept her down for the count, which is awesome!  December brings her annual eye exam and semi-annual dentist appointment.

Although she is NOT a fan of the eye drops that make her eyes blurry, she did great at the eye doctor!  The doctor said that she has no signs of optic nerve damage from swelling (possible hydro side effect) and her vision is right on track for a 4-year old.  Yay!

At the dentist, it was the first time she was brave enough to let them do the WHOLE cleaning - polishing, fluoride, rinsing...everything with no tears!  We play a fair amount of doctor and dentist at home, so she was very excited to be gifted with one of those little dentist mirrors on a stick from the dentist himself as a reward for her bravery.  Way to go, Lucy!

Hanging out in the dentist chair

We are gearing up for Christmas around here and are so excited to spend time with friends and family and have a bit of time off work.

We hope you are enjoying the holidays with your loved ones!

Happy Halloween!

Well..it's a few weeks past Halloween, but hope you had a great one!

We had a lot of fun dressing up with the girls this year.  Lucy is finally somewhat interested in movies and has been watching the Toy Story and Finding Nemo / Finding Dory movies lately.  So, Jason decided to get a Woody costume for himself, which naturally led to me finding a Jessie costume for me and Lucy thought it would be fun for her to be Dory and Ruby to be Nemo, so here we are!!

October flew by for us and looks like November will be doing the same!  We'll update on our recent trip to Virginia next time and note that Lucy's been pretty healthy so far this school year, which is great!  No missed days for sickness yet...just a couple of minor colds so far!

Hydrocephalus Walk

September is Hydrocephalus Awareness month, reminding us all the there is NO CURE for this condition and in most cases, brain surgery is the only treatment for affected patients.  In the majority of cases, one surgery is not enough and shunts malfunction, requiring follow-up surgeries for the patients

We are SO thankful that Lucy has not had any issues with her shunt thus far, but every time she seems extra sleepy or throws up or tells me that her head hurts, I briefly worry that this might me the time.  :( I try to remind myself to take a deep breath, trust God and know that His plan for her life is EXTRAORDINARY and He will take care of her always.

We were able to participate in the local Hydrocephalus Walk at the Mall of America again this year - it's still quite a feat for us to get 4 humans out of the house by 7 am, we were feeling pretty good about that!  Lucy got to meet Miss Minnesota (a real princess!), which was her favorite part!  All hydrocephalus patients got an orange bandanna to wear, which Lucy wore proudly!

We have an appointment with Lucy's neurologist next week - thankfully no MRI this time - and anticipate that it will be an uneventful appointment...will post after we meet with him.  Jason and I are continually impressed by miss Lucy - she can read most words, is hilarious at times and is such a sweet, caring big sister!

Thank You for your continues thoughts, prayers and support for Lucy and all of us!

Relaxing in the crib together...

Playing Salon with Daddy

PJs on, ready for a story with cousin Dawson!

And look which sweet, sweet baby is 3 months old already!!!

First Day of Preschool!

Ready for her first day of preschool!!

Excited, too!

Lucy started all day preschool this week!  She is attending 3 days a week for just over 6 hours per day.  It's pretty weird not having her around, since she's been with one of us, my mom or a nanny at our house since she got home from the hospital!  Plus, I'm still on maternity leave with Ruby so I'm at home all day!!

To say she's a fan of preschool would be an understatement!  She seems to really enjoy it and comes home with art projects, stories of her friends and teachers and even has been eating the school lunch!  I sent a nicely chopped and easy to eat lunch with her the first day and she didn't even eat it...so I guess we'll see how school lunch goes.  The teachers, room helpers and school nurse all know about her TEF and narrow esophagus, so they are very helpful when she eats, helping her cut things and reminding her to take frequent drink breaks.  We always send snacks in her backpack in case the food provided isn't something she can eat.

They have a rest time after lunch,which I was a little concerned about since she hasn't napped since she was just over 3 (she'll literally stay up until 11 or 12 if she naps on a regular basis!).  However, she says she just "rests" quietly and it's fine.  I suspect she may be falling asleep based on how peppy she is at 8:30 pm at home...and my suspicions were seemingly confirmed when she got an award for being a good sleeper during rest time all week...Hhmmmmm.

To see her bounce back so quickly from her last dilatation has been awesome...what a trooper!  Thanks for the continued prayers and interest in Lucy's journey!

"Dad - is this high enough???"

Enough pictures!