Monday, October 20, 2014

A Star is Born

Our sweet Alex was featured in Friday's Denver Post newspaper.  She was photographed while she was picking out her pumpkin at the hospital's pumpkin patch last week.   She was really excited to see her picture printed.  

Saturday, October 18, 2014

Home and Well

We were discharged Thursday evening and Alex has been doing great. We are so excited to be home together. The hospital has been on visiting restrictions since the beginning of September due to the increased respiratory viruses circulating since late August so siblings and visitors under 13 years old are not allowed to visit.  Ryan is not fond of this restriction and misses her sister when she's gone. Luckily it was a short stay.  Our sweet little friends, states away always show their love and support when Alex is hospitalized.  Check out what they made for Alex.

Zoe and Lucy

Friday, October 17, 2014

Halloween fun

"I like that one"

Pumpkin Patch with Mommy

Elmo "Junior Officer"

There was a lot of Halloween excitement for the kids at the hospital yesterday. In the morning we were invited to visit a pumpkin patch outside the hospital and Alex had fun picking out her own pumpkin to take home with the help of Aurora police officers.  Spirit Halloween was providing costumes for all the patients as well.  We've spent a lot of time in the hospital over the years, including most holidays at some point, and Children's really does an amazing job of bringing the fun and excitement of the holidays to the kids.  No wonder Alex doesn't mind her visits too much!  I couldn't think of a better place for her to go for her medical care.

Thursday, October 16, 2014

"I'm ready to eat and go home"

Alex is doing great.  She was up at 4:30am this morning asking the nurse for a juice box and to order her some food.  She wanted to take her bipap mask off and was ready to get the day started.  I had to explain it was still dark out and way too early to be up.  She did fall back asleep, however we were up again at 5:30 and again at 6:30 and finally up for good at 7am.  Pretty typical night when you stay in the hospital.  If you can get any block of sleep throughout the night, we consider it a good one.

When one of the surgeons came in this morning she asked him if he brought her a Barbie.  She's is definitely feeling like herself and chatting it up with anyone and everyone who walks by her door, which she insists on leaving wide open.  There's talk of her going home later today too.  Thanks for all the thoughts and prayers, they are much appreciated!

Wednesday, October 15, 2014

Recovering beautifully

Alex hit the recovery room this evening feeling good.  Her surgeons said everything went as well as it could have, so we are happy for the good news.  Because the revision is not as involved as the first surgery, her recovery time should be shorter.  We'll see how she does overnight and touch base with the medical team in the morning.  Alex has already watched the movie Frozen once and I have a feeling a Frozen marathon is about to take place =)    

Round II

Checking in for Alex's surgical revision.  She's in good spirits and will be admitted to the floor after her surgery. As always, hoping for a short stay.  Prayers appreciated for our sweet girl and a speedy recovery.    

Thursday, August 14, 2014

First tooth fairy visit

Alex has been doing really well since being home.  Yesterday evening she had a scope done under anesthesia to see if they could avoid having to do a full on revision of her surgery but unfortunately they were not successful in correcting the problem.  There was too much inflammation to take her to surgery last night so she'll undergo a surgical revision in the next couple of months.  
The more exciting news of the night was Alex lost her first tooth!  She had a loose tooth that was ready to come out when we arrived for the procedure so the anesthesiologist pulled it out (so she wouldn't inadvertently swallow it or bite down on it).  Mommy wasn't prepared for this but all is well now.  The tooth fairy came to our house and as Ryan put it, "paid Alex money to grow a new tooth." 

My little girl is growing up 


Sunday, August 10, 2014

Until next time

Headed home to enjoy a Sunday afternoon together as a family 

Saturday, August 9, 2014

Moving on up

Alex has been doing well since her transfer up to the floor.  She hasn't spiked a fever today which is good and she's in great spirits.  They decided she can go home on oral antibiotics which means if everything goes well tonight and she doesn't have any more fevers, we can go home tomorrow.  She'll have to come back in a few days for her surgical revision but it will be nice to be home until then. We are so happy to see Alex smiling and healing from her infection.   

Friday, August 8, 2014

Some people are worth melting for - Olaf

Alex is still hanging out in the ICU spiking fevers but overall feeling better and back to being her cute self. We are making progress in the right direction, so much so she's transferring out of ICU to the floor today. Alex has been awake and alert watching Frozen a couple times a day and chatting it up with all the nurses and medical team. She's a "hoot" as some would say and has the funniest sense of humor.

We are not sure how long her stay will be and are waiting to hear if she'll stay on IV antibiotics or transition to oral antibiotics. She will also require a medical procedure/revision involving her bladder next week due to complications from her recent surgery.  Hoping for a speedy recovery so we can enjoy the rest of our summer before school starts back up and it's Frozen outside.  

"I'm Olaf and I like warm hugs"
Thanks for the balloon Nana

"I don't know if I'm elated or gassy, but I'm somewhere in that zone" - Anna of Arendale

"Let it go" - Elsa 
Lauren and Nathan - we love the Frozen balloon

Thursday, August 7, 2014

Another PICU visit

It's been one long week for Alex and our family.  Alex was having symptoms of a urinary tract infection (UTI) over the weekend so after an emergency department visit she was put on antibiotics and we were sent on our way. She seemed to be feeling better, until Tuesday when things went downhill fast landing her right back in the emergency room.  After a many tests, pokes and prodding (I'm not kidding, she has an IV in her neck) she was transferred to the pediatric intensive care unit.  Tests came back last night showing Alex has urosepsis, a severe bacterial infection that starts in the urinary tract and spreads into the bloodstream.   She's being treated with IV antibiotics and is in the best care.

Mommy has been working many night shifts in a row and daddy had also been on nightshift duty with Alex several nights so we are two sleep deprived, slightly delirious, parents. We've been taking turns napping and of course hanging out with Ryan at home. I woke up this morning in the ICU, confused of where I was.  My brain is definitely still trying to catch up to what's happened and to the realization that Alex is in the ICU.  We certainly did not see this coming or expect to be in the hospital.  We appreciate all the prayers and love everyone has been sending...keep em coming.

Tuesday, July 29, 2014

Weekend Fun

We enjoyed a great weekend out and Alex continues to do well at home.  Hope you enjoy the pics!

Friday, July 25, 2014

We're Home!!

So excited to be posting we were discharged this evening and are home!  Alex is outside playing with glow sticks and living it up on this Friday night.  Thanks again for all the love and prayers sent this week.

Our front yard this evening

Getting closer to home

Our warrior princess is feeling happy and enjoyed her birthday yesterday.  The hospital even delivered her own personal birthday cake which she is now requesting to eat for breakfast this morning. She had a couple wagons rides around the hospital and enjoyed some fresh air outside. Her nana, grandma, daddy and Ryan (I mean Elsa...ha ha) brought food and gifts last night and spent time with the birthday girl.  Hard to believe she turned 6!!!  Alex continues to have good pain control and is on the fast track to recovery, as the doctors put it.  We should have her home in no time!

Thursday, July 24, 2014

Birthday Girl

Alex had a great night and continues to do well.  If she keeps it up she may be able to go home this weekend.  Most important news of the day though, it's Alex's birthday!!!  

Thanks to Nana for the special balloon delivery and to Gracie the dog for the pet visit. 

Wednesday, July 23, 2014

Our crazy visitor

Ryan entertained us tonight with her slime show

Surgery was a success

Alex is doing great and feeling no pain.  The surgeon was happy to share that there were no complications and everything went as planned.  We are relieved and feeling thankful she's doing so well and her pain is under control.  Thanks for all the prayers and messages.  It helps us get through the stressful times and it means a lot to us to hear from everyone.  

Rockin her recovery

Throw back post - 6 years ago today

"It's been a long 9 mos and we're finally ready to meet our baby girl. Right now we're enjoying a blissful dinner at one of our favorite spots before starting the journey of parenthood. Hard to believe we're less than 15 hrs from one of the happiest moments of our life.

And just look how great Nicole still looks."

Off to see the wizard

Game Time

Alex has a surgery at Children's today and will be admitted for about a week while she recovers.  We are in the pre-op area getting ready.  Say a prayer everything goes well without complication.  No matter how many surgeries or procedures Alex has, it never gets easier.      

Saturday, February 22, 2014

Doing well

Alex continues to get better each day.  We've kept her home from school so she can continue healing and it's looking like she'll be ready to go back next week.  Alex and Ryan are playing together again and we are happy to be hanging out together again as a family.

Thursday, February 20, 2014

Guess who's home?

We made a clean getaway yesterday evening and made it home safely.  Although still requiring oxygen, suctioning, and such we have what we need at home for Alex to continue getting better...and it helps that I'm a nurse =).  It's great to be home as a family and sleep in our own beds.  We are thankful for all of the support, visitors and gifts from our friends and family. 

Wednesday, February 19, 2014

Getting better

Our sweet Alex continues to amaze us and show significant improvements. She's talking up a storm (sounds like a nurse really with her medical terminology) and tolerating her nasal cannula trials.  She did awesome overnight and we are working on weaning her bipap settings. She's definitely over the hump and going home in the near future.

Tuesday, February 18, 2014

She's a whole new kid

What a difference a day makes.  Yesterday at this time we were discussing Alex going to the PICU and this morning she looks amazing and we are talking about doing nasal cannula trials.  We are so thankful she is moving in the right direction.  She had a great night (of course, since Jimmy stayed with her). He told me they both slept like babies and Alex didn't have any issues with oxygenation all night.  Guess we are all feeling more rested today.  

Monday, February 17, 2014

Bringing us smiles

Thought I'd share this picture of Ryan that Nana Carol sent me today.  We are so thankful she is here with us and helping us out in so many ways.  This picture of Ryan at the park made me smile.  It was a high of 61 degrees in Denver today.  The hospital is on respiratory restrictions right now and kids are not allowed to visit. So what do we do?  Divide and concur although it's much easier said than done. Missing being together as a family =(  

Staying put for now

The nebulizer treatment we tried this afternoon made Alex a little bit more comfortable and helped keep her out of the PICU. She has copious secretions, requiring frequent suctioning and she has been on her bipap nonstop helping keep her lungs open.  She is probably peaking in her illness so it's not surprising that she is getting worse and her course of illness is typically on the longer end. The real test of if she'll remain on the floor will be how she does tonight.  Nighttime and sleeping are always a challenge with keeping her oxygen levels up and providing additional respiratory support.  Let's hope she has a better night tonight.  We thank you for the prayers and positive thoughts and have felt the love all day =).

PICU bound?

Alex had a rough night and morning and there's a good chance she could be transferring to the PICU. She's on a pulmonary floor but maxed out on her bipap settings and support they can safely provide outside of an intensive care setting. We are trying a couple of medication interventions and then the medical team will reevaluate and determine if she requires escalated care in the ICU to get her through the worst of it. Not the news I was hoping to post.    

Sunday, February 16, 2014

Round 2

Alex was admitted to the hospital on Valentine's Day with pneumonia. She also tested positive for a virus so her poor little lungs are struggling.
Good news is she was admitted to the floor this time instead of the ICU.  She's getting vest treatments, suctioning, oxygen and has been on her bipap machine for extra support.  She's in good spirits and being such a little trooper.  Please say a prayer that this is a short stay and she turns a corner soon.  

Thursday, January 30, 2014

Home at last

We made it home just in time as a snow storm is moving in.  Alex is cozy playing with her balloons and cuddling with her little friend Sir.  We couldn't be more thankful to finally be home.

Adios Children's

Alex was discharged this afternoon and feeling so much better.  
We are so excited to go home! 

Wednesday, January 29, 2014

Guess who's here?

Alex told everyone who entered her room today that her Nana was coming to visit.  Then she would ask, "do you want to meet my Nana?"  She's definitely feeling so much better and telling everyone about it.  She weaned off the heated high flow oxygen today to regular oxygen and has not needed to be on bipap all today.  If all goes well tonight, we'll go home tomorrow!!  

Tuesday, January 28, 2014

Dance Party

So what do we do at the hospital all day and night?  We have dance parties of course.  This is what we've decided to call her vest treatments that shake her up and today we decided to add some music to our party.

Alex had a great day and did 2 four hour high flow oxygen trials.  She is getting stronger every day and and has really turned a corner.  Next we work on weaning her off of the heated high flow oxygen to regular oxygen.    

Moving on up

Yesterday was very busy and started off with a rough morning.  Alex needed more respiratory support overnight and during the day so they were considering keeping her in ICU.  She improved a little in the afternoon so we finally moved to the floor yesterday (Monday) evening.  She has copious secretions and mucous so she's getting a lot of deep suctioning, vest treatments and continues to get extra support from her bipap and heated high flow.  We didn't get much sleep last night because her oxygen saturation kept dropping so we are hoping to make some big strides today while she is awake.  

Sunday, January 26, 2014

Nite Nite

All Smiles

Alex is having a good day and is happy as can be with her new Cinderella Barbie.  Her nurse made sure she got an extra special surprise for being the sweetest lil' patient and doing all of her respiratory treatments. She is back on track with her high flow oxygen trials and tolerating almost two hours at a time. Because of the fevers yesterday, she was only able to do one trial.  She woke up with a low grade fever this morning but hasn't had one the rest of the day.  They aren't quite ready to transfer her out of the ICU but we are really close and hoping to move to the floor tomorrow.

Mommy was able to sleep in her own bed last night and be home with Daddy and Ryan for a little while this morning thanks to Cat who stayed with Alex last night and my grandma.  Jimmy came down with an illness the same time Alex did, over a week ago and finally went to Urgent Care this weekend since he wasn't getting better. He's on antibiotics now and they think he has the flu based on his symptoms so he hasn't been able to visit Alex. It's always hard being separated and I'm thankful I was able to spend time with them and give them big hugs. It's easy to feel isolated, not step foot outside for days and feel delirious from lack of sleep when you are staying here.  Looking forward to going home and the family being together again. Situations like this always put things into perspective. We really appreciate all of the love and support we've received.  We'd especially like to thank KK and Katie for bringing us snacks and a home cooked meal tonight and Cat for sleeping at the hospital on her night off.

Saturday, January 25, 2014

A lil' bump

As a nurse taking care of kids in similar situations as Alex, I often tell parents that the healing process is typically not a straight road, and more like a rocky road with bumps and ups and downs.  Alex has hit a little bump in her recovery and is spiking fevers again.  We are holding off on her high flow oxygen trials this morning and letting her rest and working on getting rid of the fever.

She's been in good spirits and was up in her wheel chair a couple of times yesterday.  She even crashed my little corner space in her room last night and wanted mommy to hold her.  All the nurses, doctors and respiratory therapists love her and say how sweet she is.  She says please and thank you and asks, "what's your name" when anyone comes into her room.  She truly has the sweetest little soul.          

Friday, January 24, 2014

Things are looking up

Alex did 3 high flow oxygen trials off the bipap yesterday so definitely making some progress. She tires out after about an hour or so and will need to tolerate the trials a little bit longer before she can transfer out of the ICU. She's been awake and talking more and playing with her balloons.

PS - Thanks to our amazing Michigan family (Christy, Brian, Luke, Dorothy, Maria and Buddy), Lauren & Nathan, and Jenene for our special ballon deliveries.

Morning Sunshine

Woke up to blue skies and a beautiful sunny day. Alex had a good night and we were able to get some much needed rest. We appreciate all the love, texts and offers to help.  Means the world to us.  

Thursday, January 23, 2014

From Ryan

Ryan goes to preschool and told her teachers that her sister was in the hospital and the class made her this card.  Ryan is such an amazing little sister and always looking out for Alex.

sisterly love 

Our sleeping beauty

Dreaded respiratory season

It's ironic that the last time we posted was when Alex was hospitalized last summer.  Seems lately that's the only time our life has slowed down enough to blog. Last Friday Alex came down with a respiratory illness and she started going downhill by Sunday afternoon.  By Monday her condition deteriorated quickly and she ended up in the ED at Children's via ambulance.  I was working so I was able to meet her in the ED when she arrived. She was admitted to the PICU with a confirmed case of H1N1 flu and here we are. It's day 4 and Alex is still needing a lot of respiratory support.  She's on continuous bipap through a nasal mask (same one she wears at night to help keep her lungs open) and we are doing small trials off the bipap with high flow oxygen through a nasal cannula. Once she can handle more time on the high flow oxygen, we'll be able to move out of the ICU to the floor.  She is very weak and has been sleeping most of the time but we are thankful she remains stable and is getting a little bit better each day.