End of the year....

The year is winding down and I want to say that this has been the worst year of my life, but really it hasn't.  Things could be a lot worse.  I guess I should say the hardest year of my life emotionally.  Everyday since Charlotte was diagnosed in utero with a heart defect my mind is constantly consumed by thoughts.  I think it is easier now then it was before she was born or even until a month or so ago.

I have my 'why me' days still!  Not as many as I have had in the past, they are more like moments now...when I see people with new baby girls.  For some reason baby boys or older children don't bother me.  The holidays were hard...when you know that baby Charlotte was suppose to be with us.  I want her with me when I am out shopping or running errands, going to bridal showers, okay I want her with me all the time.  It is hard to listen to  conversations on how other people are so busy with their normal lives.  I am still working full time, being a wife/mother to Blake/Clayton, and living in Chicago to take care of Charlotte.  I am really fine most of the time, but exhausted.....this is just a hard situation in all aspects!  I try to be my normal self...but can't all the time.  My motto is "you gotta do what you gotta do."  I have to live my life my normal way, I can't be sad all the time....we still need to have some fun, some normalcy...especially for Clayton!

My friend Courtney is going through similar struggles with their baby Brenna.  Her blog post today was meant for me to read....because it inspires me to keep moving and living life through this rough patch....and keep blogging so others can support us!

" And now I realize that the love for your child and the strength that God gives you is so much greater than you could ever comprehend in a situation like this, and having that faith in God’s plan and that unconditional love for your child – together with the support of all those around you – is what keeps you going." -Courntey

I am starting to realize everyday that things could be a lot worse.  There is a reason why this happened to Blake and I and we wouldn't change our baby Charlotte.  She is a miracle baby.  The cardiologists towards the end of my pregnancy told us that they wondered if she would survive the pregnancy....I am glad I didn't know that at the first appointment!  She is our miracle!  I am blessed to be her mommy and for that 2011 was a great year.  I think this year has brought Blake and I closer too...which honestly I didn't think was possible....he has been my rock for 12 years now.

Now I pray that 2012 will be better then 2011 and she will be able to come home with us!  I dream of the day when I get to dress her every morning, change every diaper, give her a bath every night!  Heck even to be able to buy her clothes and diapers....take her to daycare....anything that is NORMAL...would be great with me.

Until then I will keep being inspired by others and hopefully helping others with Charlotte's story...

Here is to a better 2012!  Happy New Year!

Love to you all!

Update:  We went to friends house tonight.  The kids and adults were up late and everyone had a blast!  Thanks Brian and Laura!  What a cute bunch of kids!

New Line...

I am working today like a crazy women!  Year end is approaching....the busiest day of the season for most accountants!  I love being at work(never thought I would say that).  It is so nice to do my normal routine.  I crave anything that is normal....or what my life/routine was like before I had Charlotte.

Charlotte went to IR to get the single lumen PICC line today.  It is a smaller line that will hopefully allow the skin to heal where it was poking out from the bigger line....maybe even make her less puffy!

They sedated her and gave her a paralytic and she did great!  I was surprised how quick she came back from her "spa appointment"...not quite....but I can pretend.

Her heart rate is back to the normal 130's-160's.  It was back to normal once I left yesterday...that makes it way easier to leave!

Her fluid output has been around the same 10 mls/hr.  (darn!)

My Mom and Grandma are up there today visiting my sweet girl.  It is nice that someone can be there with her when I can't.  Work is consuming me right now...which is fine...but of course I miss my baby girl.

Even though there are many bumps in my path right now...I  have to keep moving!  I need a vacation....ha!

pretty girl...

look at those lips!

My pretty girl with the Chicago sunshine on her pretty face.  We always call Charlotte pretty girl....Clayton likes to put his hands on my face and say "pretty girl pretty girl."  He is so funny.

As you can see she is really puffy!  Her PICC line is starting to come up through her skin....so to the plan tomorrow is to take her to IR to put in a smaller PICC line with a single lumen, she currently has a double lumen.  The difference is just more sites to put in her meds/fluid.  She can get a lot of meds orally so she doesn't need as big of a PICC line.  A smaller PICC line will hopefully let more fluid flow around her body instead of making her upper body so puffy!  They also don't want her current PICC line to cause an infection b/c it has broke the skin.  Charlotte's heart rate has been higher today (160's-180's...should be 130's to 160's)so they are watching her closely.

She has been pretty cranky today (sorry no hair bow)....we finally got her comfy cozy as you can see in the pic.  I took some pics with my good camera...so I will update this post later with better pics not from my phone!!!!  

Hey Mommy....

Hey Mommy....shake your donkey dootie!

I got home late tonight, had to stop at Walmart to grab a couple things for dinner.  Blake's cousin came over to help get our wireless going and have dinner.

Clayton loves Jason and loves to show off. 

We were all sitting in the living room and he runs into the living and says "Hey Mommy....shake your donkey dootie (bootie)."  I said why don't you show us.  He started wiggling those hips and got his shoulders into it.  He definitely takes after me in the dancing department....he really can shake his donkey dootie!  HA!

Some random pics....

I took all these pictures yesterday.  Charlotte is such a serious girl.  We haven't really seen any smiles...some kinda smiles..but no real ones yet.  It is kinda funny because she acts like she doesn't want to open her mouth because she doesn't want anything going in there.

My Mom and Taylor were here so we decided it would be fun to try a passie.  She kinda liked it.  It took her awhile to get her to open her mouth.  She held onto it for like 5 minutes...trying to suck on it.  I think we have a lot of work to do in this area.  Speech therapy came by today and we played with Charlotte and the passie.  Charlotte wouldn't take the passie...I think I was kinda forcing her to take it yesterday.  So now I know things to work on with her to get her to enjoy oral stimulation!

Aunt Taylor got her this hat.  So cute.  Charlotte looks so serious.  She is obviously really puffy still....I wonder what she will look like when she is a "normal" baby, without a million tubes going into her. 

Charlotte continues to do well.  I wouldn't say we are leaving the PICU anytime soon....but she isn't taking steps back.  I hope she surprises everyone!

Today she got a CT scan to look at her fluid buildups they were seeing on the x rays.  Clinically they aren't bothering her so they aren't going to intervene (on the right side...the left side is still draining) unless something changes.  They also wanted to look at her blood flow/fluid flow again in her body to see if there is another spot for a PICC line.  Her current PICC line is going through her jugular and is starting to erode through her skin.  They don't want Charlotte to get an infection so they are thinking about taking it out tomorrow.  They might even give her a "line holiday."  She has had a PICC line since she was born....that would be kinda nice!  They are trying to switch all her meds to oral, since she is doing AWESOME with her feeds.  She is on the fat free formula (Tolerex) at 20mls/hour that has 24kcals.  Her weight yesterday is up to    4.045 kg =   8.9 lbs....almost 9 lbs!

The doctors also started weaning her vent settings today.  She is doing great with the weans and I wouldn't be surprised if they start doing the pressure support trials again maybe even tomorrow.

After writing all that...I feel like we are in a good place, the real issue is the fluid drainage.  It is decreased but still there!  She also needs to grow and get off the vent if that is possible...pray that it is!  

Charlotte update

Look at her!  I think she looks like me in this picture...and those cheekies!

Sean and Kaitlin (my twin brother and soon to be sister-in-law) went to visit Charlotte today.  I couldn't decide if I was going to go...but I knew if I left my house the way it looked I would have an anxiety attack when I came home...and I am serious!  Clayton didn't have school today so I wanted to be home to play with him too.

Charlotte is doing pretty well.  A chest x ray this morning showed some more plural effusions on her right side (where they pulled the chest tube from last week), so she had to go to IR this morning.  They couldn't place a chest tube so they emptied around 15mls.  They were going to do another x ray to see what it looked like after emptying it.  Her pacer is having issues again where it isn't sensing the atrium so she is back to just being ventricularly paced.  That isn't a big deal, but it is nice if she can sense her A and pace her V to get a more accurate assessment of what her heart wants to do. 

They had to stop her feeds to go to IR today, but she is up to her full feeds which is 20mls an hour.  She is doing great with that.  They are weaning sedation and her vent settings too!  I just wish this chest tube output/effusions would get under control! That is really the big issue lately. 

I am dying to get my hands on her tomorrow.  I think they are going to do the first trach change tomorrow.  That will be a weekly thing that we will have to learn how to do so when she comes home we can do it.  With year end approaching I know I will be crazy busy this week working and playing with Charlotte!

Christmas!

 This year Christmas morning was so fun with Clayton.  It would have been the perfect Christmast with  Charlotte here too.  He loved opening each gift and wanted everything open NOW to play with.

Even his M & M's...he asked and I said sure it is Christmas!

I didn't take many pictures, because frankly I didn't feel like it and was pretty sad most of the day.  Not only for my situation but my friend Courtney's as well.

Clayton was a good boy and it would have been a perfect day with Charlotte home.  I keep praying for the day she comes home and trying to figure out God's plan....I just wish I knew...I wish I had a date.  It was Thanksiving...then Christmas...now hopefully Sean and Kaitlin's wedding (jan 21st).  I am tried of being tired!

Getting ready for Santa's arrival!

Once we got home we had to start getting ready for Santa's arrival!  First...we had to put out the reindeer food!  Odie kept getting in the way....and it was cold...so we didn't get a great picture.  (on a side note...not sure why Clayton doesn't have a coat on!)

Cookies and milk for Santa!!!  This is so fun because it is the first year Clayton really understands what is going on.

 our stocking are hung and ready to be filled!

 our 10 ft tree!  I am in love with my tree this year.  We got our tree before Thanksgiving this year (because we wanted it to celebrate Christmas early because we thought Charlotte would be home by then...) and I think we will get it early every year from now on.  It isn't coming down until New Years weekend either....I told you I was in love.

closer look at our stocking!  I have been dreaming of having Pottery Barn stockings since I became obsessed with PB like 10 years ago.  I love love love them!  They are worth the extra money...suck good quality.  I was so impressed (and they are big too!)

my sweet angel.  He is so ready for santa!

We made this ornament with Charlotte's baby hand prints.  It is so neat and looks good on the tree.  It was quite the effort to get it to look good.  I used a scalpel at the hospital to spell our her name...ha! 

My tree is all red and gold ornaments.  I am kind of a freak and wanting them all to match.  You can do this and still have personalized ornaments!  I have bought a couple heart ornaments for Charlotte...

 and Clayton has a couple fire truck ornaments!

(side note:  I wasn't using my flash...so not sure what all these spots are!)

Tomorrow will be a hard day for me.  It will be really weird celebrating Christmas without my whole family together.  Blake and I have decided to stay at home and celebrate with Clayton and I will be back up with Charlotte this week.  At least she is a baby and doesn't know what Christmas is yet!  But I know in her little baby heart she will be missing us...just like I miss her every second I am not with her.

Christmas Eve part 1

At Grieder Christmas Eve...Addy

and Clayton had so much fun...

 posing for the camera...this is the best shot of both of them...ha!

Addy and Clayton loved playing with this ice bucket.  They are at the perfect age gap and played awesome together.  Addy pretty much did everything Clayton did.

But I am sure she wouldn't give her mommy a stink face like Clayton!
My little stink!

My Christmas present...

Seeing Charlotte's face is my Christmas present this year.  Christmas time is suppose to be a time to bring family together....well in our case that isn't going to happen.  It is really sad, but I am very hopeful right now that this journey will end soon.  I feel like I have said that so many times!  I have really come to terms with the situation.  Even though it really really sucks, I feel blessed that God chose me to be Charlotte's Mommy.  I would have never in a million years thought I would be strong enough to go through this....but I (and Blake) are still trucking along just fine.

Look at that precious face.  She is still puffy...but that is my girl.  I can't wait until the puffiness goes away and her eyes are open and we can play! 

She seriously has the most beautiful baby hair.  Her poor cheekies are dry...but they don't look to bad for having tape on them for 4.5 months!  You can really see the trach site in this picture.  Once it heals it will be really comfortable for miss Charlotte.

Her eyes kinda open.  She is still really sedated because it is so painful.  I can't wait to see those big eyes pain free!  I am looking forward to giving her a passie, bottle feeding, seeing smile....the list is truly endless!

Merry Christmas to us!

Charlotte's sweet cheeks!

Who is this chubby baby?  It is so weird (and wonderful) to see her entire face.  It is like she was just born and I get to examine her face and who she looks like.  I keep touching her lips and she will move them around.  Her bottom lip is bigger then it looks when I touch them...her lips are exactly like Blake's.  It is crazy to me...I thought they would look more like Clayton's which are mine.  Blake and I were also looking in her mouth...we get to see her tongue.  I think I even saw some teeth poking through.  Wow seriously...this  is awesome.  I can't believe how much bigger and more age appropriate she looks.  She is still kinda puffy and the ENT doctors figured out that she has some clogged ducts on the sides of her nose making her nose look more puffy too....so we need to massage her nose.  

Everyone is in the Christmas spirit around here...Santa came!  I have a whole bag full of gifts people have donated to the hospital and gave to Charlotte.  Blake and I were out to lunch when Santa came, so the nurse took a pic and sent it to me!

Since her trach yesterday Charlotte has been heavily sedated because it is pretty painful.  During the procedure they also looked at her nasal passages and they are nice and open still!  They did do a dilation to keep them nice and open.  They put a bigger feeding tube in also.  They looked at her airway and it looks great too.

I think the trach was the best way to go at this point.  Having the breathing tube in for 4.5 months is not a comfortable way to breathe.  She will be much more comfortable once the trach site heals.  We will be able to hold her more, see her cute face!, start orally satisfying her with passies and bottle feeding, see her smile, see her frown....pretty much see everything a normally baby would do.  Being able to move her around more and hold her will be really good for her lungs too!

The trach is not a permanent thing.  Actually we have no idea how long she will need it.  Once she gets healed and up and moving I think it will be a great thing.  Her airway is completely open but really swollen in her upper airway from having the breathing tube in for so long.  So having the trach should let that heal up.  Once she is ready they will wean her vent settings and hopefully get her off the ventilator and she can breathe through just the trach site.  Really we won't know and it is all up to Charlotte.

Currently, Charlotte is doing really well.  Yesterday they talked about taking her chest tube out today because it hasn't been draining much.  After her procedure she has dumped out 70 mls, that is over a 24 hour period.  I hope that once she recovers they will be able to pull it out!

Keep praying this will move her in the right direction!

4.5 months and we finally get to see her face!

Tomorrow Charlotte is getting her breathing tube out and a trach put in. I can't wait to see her face and be able to hold her more often once the trach site is healed. I know this will just get us that much closer to getting out of Chicago.

They are talking about putting a pacemaker in in a couple weeks. They didn't want to do it tomorrow along with the trach bc they didn't want to stress her out.

Her chest tube output has been decreasing and she has been doing great with her feeds, which is a good sign.

Blake and I got to hold our princess today! Blake hasn't held her since August!! Charlotte (and us) loved every minute of it. I put her in a Christmas sleeper and she looked so cute...I could just eat her up.

Charlotte also had a visitor today....my friend Laura..and she took some pics...can't wait to see them!

Today was a good day....crazy how things change week by week. Pray for baby Charlotte that she does awesome tomorrow. We are so excited to see her face!


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A day in Pics!

Today Laura came up to meet Charlotte.  She took all these pictures for us.  I love them all....thanks Laura!  I will cherish these forever!