Home!

So happy to be able to giggle together again!

We are so happy to report that Lucy was released on Friday evening...it was a bit touch and go before they let us head home as her blood pressure was still quite high and she was throwing up every few hours.  However, we were given the green light and after a 2 1/2 days at home, Lucy is very close to her previous self.  At first, she was complaining about her stomach hurting quite a bit, but as we got her system used to food again, that seems to have stopped for the most part.  She is on laxatives for a while, so we have some work to do to get all of her system working at the correct pace again.

Nearly every single medical professional that met Lucy told her how brave she was and what a great patient she is...now I'm sure they tell most kids her age that, but she seriously is the best!  She's definitely a mind over matter kind of kiddo, so once she knows she has to do something like take a med or get a nebulizer she sets her mind to it and just gets it done.  What a rock star!

She spent a good part of yesterday and today begging for food that I wouldn't let her eat, like BBQ potato chips, ice cream, milk on her cereal and Chick-Fil-A. Basically, I made her eat dry cereal, crackers, applesauce and water.  :)

I feel like we lost the first week of the year!  Again, all things go on hold when a kiddo is in the hospital...so we spent the weekend enjoying extra cuddles while trying to cook some normal meals, do laundry and organize the house a little bit.  As you know, it was especially difficult to leave Ruby at home, since she is still so little and really expects mommy to be around.  In the past, I've been able to spend 100% of the time with Lucy in the hospital, but this time I had to split my time between home and the hospital, so that was tough on both of us.

Thanks again for your support!  We appreciate it so much.  This episode has reinforced for us that Lucy's body cannot handle illnesses like others can, so we definitely anticipate this will not be the last time we'll be in this situation and I'm doing lots of research on how we can change our lifestyle, diet and other habits to help prevent this as much as possible.

On the Mend

Lucy has made great strides in getting better over the past 2 days.  She is totally off of oxygen support and therefore her sweet little face is no longer hidden under tape and nasal cannulas!

She continues to throw up a few times a day, but her system is slowly moving things out the other end as well (enough said!).  Today was the first day she felt like getting out of bed and having me read to her and look out the window with her...we saw a lot of birds, buses and people running in the COLD weather to get to their cars!  She is eating a little bit and was thrilled with the dinner we ordered at the hospital of rice noodles (one of her favorites!) and orange jello cubes.

I am anticipating that she will be home in the next few says and can't wait to have all my family under one roof again.  I cannot begin to tell you how lonely it is not to have miss Lucy at home.  Before bed, I just walk into her room which is perfectly neat but SO empty and it makes my heart hurt to know she's at the hospital instead of in her bed, cozy with her stuffed animal friends, snoring her little snore so I know she is safe.

Thank You for your prayers!  We are blessed to know such great, caring people.  I hope my next post is about Lucy at home!!

P.S. Ruby is doing all right too...she has an ear infection and is generally pretty fussy but is getting lots of cuddles from us whenever we can.  She misses her big sister so much but was very happy to be able to Face Time with her yesterday!

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!