Progress

Life is still pretty crazy, I still wish I had a pause button to press to calm things down, and I'm still an anxious mess... BUT... Things have come a very long way in the past week.  I don't have the guts to read my previous blog posts because I can't experience that emotion again just yet but I thought I would post a bit of an update of where things are now and express how incredibly grateful I am for the thoughts and prayers that have gotten us to today. A lot of this post is mostly for me to remember so feel free to skip through some of the details!

After four weeks and three days in Intensive Care my dad was MOVED to another hospital last Monday to continue healing and begin rehabilitation.  I had a lot of issues with this... my dad on the other hand was ecstatic.  I didn't understand how there wasn't any kind of "stepdown" from ICU to rehabilitative care.  He was going from his own room with the best nurses, the best doctors and pretty much one on one care to a place that he was sharing a room and there are way too many patients per nurse.  Dad wanted me to be there for the move so I took some time off work to be there.  He was excited but the change and unknown had me a nervous wreck.  When everything was finally coordinated and the EMT's were there to transport him I gave him a kiss, got in my car, and drove to the new hospital to meet him.  I held it together until I had issues parking at the new hospital, got lost when trying to find his floor (this hospital has at least four different sets of elevators and only one takes you to his floor) and then when I made it to the floor they made me wait by the elevators until he was "settled".  I start looking around to observe the surroundings.  I see people on cell phones, laughing and joking, and speaking unprofessionally with colorful language. Those who know me know I don't cuss... I don't judge people who do but it is a personal choice not to use certain language.  That was all I needed to break into tears.  Full and complete meltdown.  Tears that I had held in for too long.  

My mom met me there at that point and didn't understand why I was so upset.  When we were finally able to go to his room we walked through the cramped hallways to a room where there is room basically just for his bed and a small table with drawers for his personal items.  The ventilator was crammed in the corner, the tube feed was hanging on the other side along with the suction that he desperately needed at this point.  I immediately helped get him comfortable in the bed.  They didn't bother to do that.  I left the room a couple times because I couldn't hold back my tears.  I heard my mom telling my dad that he needs to act like he is okay because I was upset.  I walked back into the room with tears streaming down my face and looked at my dad who couldn't talk to us at this point and told him he NEVER has to pretend things are okay for me and shouldn't do it for anyone else either.  I explained that I was upset, I was allowed to be upset, and that I was having a hard time with the transition.  I wrote my phone number on the small board in his room.  I had a meeting the next day with my boss who was driving three and a half hours to come to my office and I couldn't go a night without sleep.  I had to leave.  I begged the nurse to check on him frequently.  He couldn't use the call button, he couldn't use the suction on his own, he couldn't yell for help.  After staying a while the nurse saw how upset I was and promised she would take good care of him that night.  I left and literally cried the entire night... I think my phone call to Kimberly that night had to have been a difficult one for her.  She can usually talk me down.  It wasn't working that night.  

Fast forward (wish I could have done that in real life) to this week... I'll start with the negatives but will end on the positives.  Because really the positives are all that matter at this point.  Dad is still not getting the care that I would like.  But he has made a ton of progress.  He has to wait longer for things he needs than he should be, they aren't the most professional and I worry way too much.  But this is where we are today: 

• NO MORE VENTILATOR!!!!!
• Trach may be removed tomorrow (fingers crossed) 
• Tomorrow might be his last dialysis (toes crossed)   While typing this blog I found out NO MORE DIALYSIS!!!!
• Eating on his own with less tube feeds (last night he ate a real sandwich) no more mush grossness
• He has been getting up (with help) and sitting in a chair to eat
• Physical Therapy has begun and he is walking
• Talk has begun about transitioning him home

And most importantly....

I HAVE BEEN ABLE TO HAVE CONVERSATIONS WITH HIM!!!!! 

He has even called me on the phone.  

So through all of this madness... miracles have happened.  And I am so incredibly thankful.   

I'm not sure if my family or I will ever be the same.  I pray that things continue in this direction.  That Brianna gets to see her papaw soon.  But today... I'm happy.  

Babies

There has been a lot of talks about babies surrounding us lately.  Which I won't lie... it has been kind of nice since things have been so uncertain with my dad.  New life always has a way of making everything feel better.

I have several friends who have been trying to get pregnant... and some newly pregnant family members.  I asked Brianna the other night if she wanted a new baby cousin and she looked at me and very seriously said, "No thank you, I'd like a baby sister"  WHAT!?!  I couldn't believe it.  We have asked her questions like this before... trying to see if she thinking about having a sibling... and the answers are always so vague.

This time it was clear.  And i can't help but hope that someday we give her this wish.  That she has a sibling to experience life with.  A sibling to be there for her when Michael and I are gone.

Hospital Guilt

I really hope this post makes sense.  My sleep deprived state is really catching up to me! Not much has changed with my dad since my last post.  To be honest, not much has changed with me either.  I'm still an anxious mess and not able to sleep.  I can't focus on anything and never feel ok where I am.  Similar to what I call "Mommy Guilt" I'm having what I'd now call "Hospital Guilt".  When I'm at work or with Michael and Brianna I am feeling guilty that I'm not at the hospital.  When I'm at the hospital, I'm feeling guilty I am not at work or with my family.  The worst part... I don't feel like I'm accomplishing anything anywhere.  

Brianna doesn't stop growing because my dad is in the hospital. The end of my fiscal year at work doesn't get changed because my dad is in the hospital.  Laundry doesn't stop piling, dust doesn't stop accumulating, dishes don't stop stacking in the sink... you get the picture.  The problem is... my heart has stopped.  And I'm really having a hard time.  

I have been trying to use the same advice for my current state that I apply to the Mommy Guilt.  I'm trying to live in the moment.  Be where I can when I can and focus on that thing.  Today I didn't go to the hospital at all.  While I did feel a tug in my stomach trying to convince me to get in the car and go... I knew that it was okay for me not to go.  There has only been one other day that I didn't make it since this all began 19 days ago.  After working all day, I made my family dinner and played with Brianna.  Really played with her.  We talked, we giggled, we danced, we sang, we colored, we played with her toys, helped Daddy wash his car and went for a walk.  It was good for my soul and hers. I love my baby girl and I have been missing our quality time.  

Bri has still been sleeping in her crib at 2 and 1/2.  While a lot of other kids her age have attempted to escape, she never has.  Her pediatrician has told me to leave her in the crib as long as she still comfortably fits or is climbing out.  So that was my plan.  But then our sitter mentioned having time lifting her out in the morning (we forget not everyone is as tall as we are) and Brianna has also been liking being in bed with Mommy and Daddy a little too much lately.  So I decided it would be a good idea to consider taking the front of the crib off and putting the bed rail on that came with it to convert it to a toddler bed.  I had the thought to get new blackout curtains (in an effort to begin reinforcing naptime) and some new adorable bedding that would make her room feel special and ultimately be a place that she would feel like a big girl and `hopefully` want to be in her bed more.  

Apparently the only part of this conversation with Michael that was heard was the "convert the crib" portion.  So tonight... twenty minutes before bedtime... he randomly went into her room to do just that.  And thats when the past 19 days really caught up with me.  My heart all of a sudden realized it has been stopped.  There wasn't a huge breakdown but there was a breakdown.  I have to stop trying to figure everything out.  I can't fix anything right now.  I have to stop worrying about what other people are thinking and feeling right now.  This makes me super uncomfortable but I have to do it for survival at this point.  Thanks Kimberly for talking me through this tonight.  

They are taking my Dad off the ventilator tomorrow around 11am and doing a tracheotomy which has to be done because he isn't ready to come off the ventilator and they only have a limited amount of time a patient can be on a regular ventilator.  Our hopes are still high.  We are praying that while this feels like a step backward, it will ultimately help us make a big step forward.  We really need some good news.  So any thoughts and prayers that we can get coming our way are so very appreciated. 

Lately

I'm really struggling with anxiety tonight and am unable to sleep.  I started writing about an hour ago to try to get things out and while it was helpful for me, I'm not ready to post it.  However, I will say that my dad has been incredibly sick.  Critically sick.  As of tomorrow, he has been in ICU for two weeks.  TWO WEEKS.  Two weeks of my world being turned upside down.  The post I wrote went through every medical issue and setback he has had over this period of time.  I know this isn't the place to throw all of that out there but this is the place that I can share how I am feeling.  

So there are a lot of things that I am praying for, wishing for, longing for... things I took for granted two weeks ago.  

I want to hear my dad's voice.  

I want to call him and have one of our talks.  The talks that make me feel so loved.  That encourage me.  That always let me know he is proud of me.  And the advice that he is so good at giving when I am ready.  Never pushing, never prying, just there.  My dad is the best at being there.  

I want some comfort for my dad right now.  

He is fighting so hard, I want so bad to be able to do more to fight for him.  

I want some real answers from doctors. 

I want to know what he needs and provide it or find a nurse or doctor that can. 

I want the hours that we are spending at the hospital to DO SOMETHING.  HELP MORE. 

I want to take his pain away.  I want to let him use my organs so that his can heal.  

I want to smile when I see his face and tell him he will be fine.  

So that's where I am at emotionally.  As of the past two days, physically, I have had to be back at work.  It is hard to concentrate but I have to be there.  We are in the  middle of the fiscal year closeout which is madness.  I also have needed to be around for my family.  Brianna misses me.  Michael is stretched thin with work issues and taking over majority of Brianna's care.  I try to get home before she goes to bed but it doesn't always happen.  She has been watching a show on PBS that has a song that she sings every time she sees me.  "Grownups come back"  It breaks my heart that she has to worry about this but I'm glad that she has this little song that helps.  She knows Papaw Ray is in the hospital.  She says that he is sick and hurting.  And then she puts her tiny hands on my face and says, "Don't cry, Mommy"  My heart is breaking and my baby girl sees it.  

Thank you to all of my friends and family for the support.  Whether it is a nightly phone call or just a prayer every once in a while... it means everything to me.  Thanks for listening to me vent.   

Easy Breezy

Summer has really been breezing by this year.  And by breeze... I mean, literally... a breeze!  Our weather has been all anyone has been talking about.  It has been crisp and cool in the evenings and bright and sunny with temps in the mid 70's during the day.  And it is August.  AUGUST!  This is not great swimming weather but being able to enjoy so many other things outdoors has been simply amazing. Also... Breezy happens to also be one of Brianna's many nicknames. 

We finally have patio furniture for our big deck on the back of the house.  It gets direct sunlight until the sun begins to set at night so usually we don't get to spend much time out there.  This year we seem to spend time out there every single day.  Ken (next door) built us a custom gate for the deck stairs that is gorgeous and looks like a continuation of the deck.  Brianna has been able to confidently navigate stairs for quite a while but with all of her rolling cars, bikes and toys it is so nice to close the gate and know that she is safe and I don't have to stand guard the whole time we play.  Out on the deck with our new table and chairs and grill, Brianna has the coolest water table (from her TT), her own picnic table, a little tikes slide, a cozy coupe, little tikes basketball hoop (pink!) and whichever ride on toy she selects to take out as well.  We often grab some snacks and sidewalk chalk and we are good to go.  I know that two year olds have a reputation of meltdowns, strong will, and can be incredibly egocentric... and we definitely deal with those things... but the way she faces each day as a new adventure, as a way to discover and absorb absolutely everything and everyone she comes into contact with is so much fun and is truly miraculous to see.  The best part is that as her parents, Michael and I get a front row seat.

Another thing that has really developed this summer has been Brianna's relationships with people other than Michael and I.  She has always had close relationships with family and friends but now that I see her actively playing with other children of all ages it is so exciting.  Brianna has little neighborhood friends already at two and a half.  I'm surprised that it has taken me this long to figure out that having a guest over to play with Brianna is such a benefit to all involved.  That child's parent might get a little break, I can get some things done around the house without feeling guilty about not being engaged with Brianna, and best of all... Brianna has an absolute blast (and subsequently sleeps really well).  The day after Brianna's first little play date with a neighbor I texted Tara with the realization that our friendship all of those years was just as much of a gift to our parents as it was for ourselves.

Brianna has spent the night with both Grandmas more frequently and these sleepovers make her so happy.  We miss her soooo much when she isn't here (it is especially strange for me because I can literally count on one hand how many times I've been home overnight when she hasn't) but she has never been anything but ecstatic when its time to drop her off and leave.  I love that our sweet girl is so secure in our love.  I love that while she may have twinges of separation anxiety she has way too much fun with her grandparents that you would never be able to see anything but pure joy on her sweet face.

I continue to get my girl time with TT on Friday's along with a baby fix with Mr. Grahamjamin.  These visits make my heart and soul happy and I wish we lived closer to each other so that our relationship could continue to be as effortless as it used to be when we were just babies ourselves.  So tonight Brianna and I were playing on the deck when Shirley peaked around the back of our house to say hello and invite us to sit on the porch with her.  So we did and then the magical weather brought a bunch of other neighbors out!

You see, guys... A couple across the street have a two year old little girl and E just had a second baby girl two weeks ago. Brianna has seen their oldest, M, at the library every week when Shirley takes her for story and music time.  We have talked here and there and always say we would love to get the kids together to play and I obnoxiously always tell her how envious I am that she is able to stay at home with her babies.  Anyway...  another young couple from California just moved into the house on the other side of Ken and Shirley's a few months ago after he finished up his career in the Air Force and they also have two little girls (4 and 6 years old).  I think they have similar setups to ours where they spend most of their time in the back of their homes which makes all of our interactions remain limited to  when we are taking a walk or on our way in or out of the house.  The couple across the street decided to take their first walk as a family of four and as I was able to see their adorable new baby and then the new neighbors pulled in their driveway. Brianna immediately began playing with their little girls because they had just left their soccer league games and were still full of energy.  Michael ended up coming outside and miraculously all three couples...actually four if you count Ken and Shirley... were all outside talk to one another at the SAME TIME!  And it was sooooo much fun! Even though the conversations weren't deep and our girls were all running around like crazies it gave me hope that Michael and I can continue to develop these friendships.  Friendships that could be right here on our own street.  Michael made fun of me after we came back inside because I was so excited.  I think it is so fun to make new friends and we definitely need some more couples to hang out with!

So the theme of this summer seems to be that I am not taking a single thing for granted.  I want everyone to know that I appreciate every single person that makes up our "village".  I really think there is something to the old phrase "it takes a village to raise a child". I spend a lot of time stressing out about trying to make everyone happy but I've really been trying to look at this all in a more positive way.  I'm so thankful that we have so many friends and family that we have to work to balance our time.  This weekend should bring many more adventures and requires quite the balancing act but it will be fun!  And I can't wait to make more memories for Brianna!  

I've been great about enjoying every little moment with Brianna this summer but I have been terrible about documenting them.  I took the camera with us to the park at the beginning of August and finally got some pictures that aren't from my cell phone!  

Powdergate and Why I Love Fridays

I'm am so incredibly blessed to be able to have the opportunity to work a four day work week.  Monday through Thursday I am able to work a little extra so that I can use that time to have a three day weekend EVERY weekend.  It is perfect for me, especially since Brianna was born.  Going back into the office following my maternity leave was so unbelievably hard for me so for a month or two I worked a five day work week because I didn't feel like I could stay away from Brianna any longer than my regular 7am to 3pm day.  I quickly realized having a free day every week to run errands, schedule doctor or hair appointments, and not make the hour commute into the office was something I really needed in my life.  For over two years now, Fridays are my favorite.  Friday is my day that I usually get some uninterrupted one on one time with Brianna.  Sure, there is typically some cleaning and laundry that is accomplished but it is the day that I get to pretend I'm living my dream of being a stay at home wife and mother.

When Tara started really struggling with childcare options throughout her pregnancy I was quick to volunteer to watch Graham on Fridays.  I loved her baby boy long before he was born and looked at it as a chance to spend some quality time with him every week.  Tara has always been there for me and she would come up every Friday night to have dinner, hang out and play some cards when Bri was super young which meant the world to me it because I was able to put Brianna down to bed and not have to miss any time with her and still could have a fun night.  Now, after having a fun day with Brianna and Graham on Fridays, Tara comes up after she gets off work and we have dinner and hang out.  It is the best.

(In this picture Brianna is wearing her favorite PJs.  They have a little cape so we call her SUPER BRI when she wears them.  Superheroes can be girls too... especially curly headed cute ones.)

Well that was a VERY long back story that leads into the eventful Friday evening we had last night.  Brianna and Graham were both little angel babies all day long.  Brianna was her normal crazy self and Graham was sweet and happy.  He is such a laid back baby and I spent most of the day cleaning so he would just hang out in whatever room I was in.  I began working on Brianna's room and Graham was playing in Brianna's crib kicking his little legs like crazy and "talking" to me.  Brianna was in the living room dressed as sleeping beauty and coloring and would peek her head in occasionally to make sure Graham and I weren't having too much fun without her.  I was organizing all Brianna'a hair products and random things like cotton swabs and thermometer covers.  Michael got home from work and said hello then jumped into the shower. I saw Tara walking up the front path so I picked Graham up and walked into the living room so he could greet his Mommy.

Tara opened the door and had a horrified look on her face.  I freaked out and though something terrible had happened on her drive from work.  She calmly took Graham from me and said "turn around".  When I looked down I saw this:

Brianna had somehow gotten a bottle of baby powder out of her bedroom when I was straightening up.  When Tara walked in the front door Brianna was standing in the middle of the living room SQUEEZING the baby powder over her head!!!  As soon as I saw her I screamed... Michael came running out of the bathroom, thankfully clothed since Tara was there, and thought someone got hurt.  By then, we all started cracking up laughing.  Michael grabbed Bri and took the two above pictures before putting her in the shower while I went to town cleaning up the layer of baby powder on every surface in my just cleaned living room and vacuumed up the remainder.  

At least we now know what Brianna wold look like as a blond... and truthfully I'm thankful these things don't happen more often in our house.  

When visiting the Lee house on a Friday you are much more likely to see this...

Or this...

And definitely lots of this...

I love these babies!!!  

Is it Friday yet?

Bye Bye, Bink!

My little girl amazes me.  Truly.  

Being an anxious person in general, I tend to also be anxious as a Mommy.  Shocking, right?  Most milestones we approach stress me out.  I worry if Brianna is ready.  I worry if she is on track.  I run through different scenarios constantly.  This long post is all about how Bri finally kicked her worst habit... and I'm writing about it so I remember all of the little details.  And I'm sure I'll wonder how I did this if baby #2 ever comes along.  

Well... everyone warned me... the sooner you break the pacifier habit, the better.  I made the mistake of letting her keep it much longer than she should have.  The time to get rid of it once and for all came months ago.  But I knew we were DRIVING to Florida in May for vacation and the thought of driving 16 hours each way without the assistance of her pacifier was enough to send me into a full panic attack every time. I decided that after our trip there would be no more pacifier (we call it a binkie or bink in our house) and I really wanted to start working on potty training as well.  We've been back for three weeks and I was getting more and more anxious.  I began reading blog after blog and any bit of research I could.  I was worried that I was going to psychologically damage my sweet girl and if I'm being honest I was stressing about how much sleep I was going to lose, staying awake with a crying baby.  

After reading about many, many methods I decided to go the "Binkie Fairy" route.  For the past week she has only been allowed to have the bink in the car and when going to sleep.  She liked the idea of having the fairy leave her a surprise but when we talked about how the fairy was going to take all of her binks to other little babies who need them she thought about this deeply and looked up at me with those huge, innocent, gorgeous brown eyes and said, "but I need it, Mommy".  And I melted.  As the week went on she grew MORE attached to the darn thing.  And I was officially freaking out.  

I have been trying to figure out what little gift would be appropriate.  What does a Binkie Fairy bring?  What would be exciting enough to her that would lessen the pain of losing one of her favorite comfort items? (Luckily her blankie (kiki) is her absolute favorite... and that isn't a habit I have to worry about breaking.)  I just couldn't decide.  

And then it happened.  Yesterday she didn't have her bink all day.  She had it for a few minutes while I was making dinner and she was resting on the couch but then at bedtime she was cuddling with her Daddy in our bed and she went to sleep without even asking for it.  When I moved her to her crib and she woke up she didn't cry for it and I didn't place one in her crib.  As I crawled into bed I figured I'd be up within an hour with a crying toddler.  I woke up three or four times throughout the night worrying about her.  But Brianna???  She slept.  All night.  Not one peep out of the little angel baby.  

Brianna was still asleep when I was leaving for work so when Shirley got to our house I let her know that today was the day.  No bink.  This wasn't a problem because Shirley is amazing and hasn't been giving her the bink except for nap time for months.  I gathered all of the pacifiers and put them out of sight and told Shirley to tell Brianna that Mommy would take her shopping for a surprise later this evening.  

When I got home from work Shirley said that Brianna only asked for it once and when she told her no, she was fine with it.  Brianna was super excited to see me and we headed out to Toys R Us.  I don't know that she has been in that store since she was a baby so her little eyes lit up and she was so excited.  Before entering, I explained that only big girls get to go to stores like this one.  I let her know that she could pick out some toys but that there would be no more binkies.  We had a blast walking down each aisle.  My girlie girl doesn't even discriminate against toys for little boys.  She loves them all.  She is so sweet though and asks before picking things up and always, always puts each toy back without even the slightest hesitation.  She ended up selecting a new baby doll, a little car seat carrier, and some lip gloss.  I also let her grab a few new bath toys which I've been meaning to pick up.  

Brianna and I both fell in love with this wagon!

Brianna's new baby doll and car seat.

When we got home she didn't waste any time... we played with her new baby and then had dinner.  She had a bath with her new toys and was tired because she didn't take a nap today.  I felt a little anxious about how the bedtime routine would go but it couldn't have gone more smoothly.  She asked for her bink once but when I gave her the new baby instead she was completely fine.  She fell asleep quickly and I was and am seriously in shock.  

I am so incredibly proud of what a good little girl she is becoming.  She bravely accepted this change and I am amazed.  If I'm being completely honest, I have to mention that this transition has left me also feeling a little sad.  Other than those dang diapers, the pacifier really is one of the last things that remain from that baby stage I miss so much.  How has it gone so quickly... seriously?  

I wouldn't be surprised if we have a few challenging moments over the next couple weeks, but I am ready for it.  My sweet girl is just a couple months away from being two and a half so now its time to get serious about this potty training business.  I know it won't take long once she sets her mind to it so in the mean time I will be attempting to remain patient and calm.  I am so in love with our little curly headed sweetheart and thank God daily for the incredible gift that He gave Michael and I.  We love you, Brianna!