This girl loves her monkey...

See that monkey art card....ya I changed it yesterday to a whale picture and little Charlotte started crying.  It was a sad cry with a red face, tears, and pouty lip.  So cute!

Plan is still on for Friday!  Pray for her!

sounds like Friday?

So the new plan is to extabate on Friday.

They plan keeps changing (surprise surprise).  On Friday they are going to take her to the OR to remove the stents and look at her nose, do her hearing test (has to be done under sedation), look at her ears to see if there is a fluid build-up (her last hearing screen showed there was) and maybe put tubes in.  Then extabation.  I am not sure if that is going to work because she will be under sedation.  So if she is to sleepy then they will do it this weekend.

I am trying to get everything done earlier in the week because I have to be in the office on Thursday for month end close and Friday we are taking Clayton to the north pole to ride the Polar Express!  I am NOT going to miss that....we have had the tickets since the summer (thanks to Alisha and Matt)...and he has been talking about it non stop.  It is truly magical and I want to take pictures....duh!

So the plan is still kinda up in the air for baby Charlotte, but it will work out and I will get up here probably sometime this weekend to see my girl!

Talk about being torn in two directions.....the story of my life.

Keep Charlotte in your prayers.  This is a big week for her.  Charlotte has to be strong enough to breathe on her own...I am nervous but she has been doing awesome with her breathing trials.  Actually today in rounds they said she looks more comfortable on them then with the ventilator.  She is in one right now, sound asleep for two hours.  I hope this is a good indication!

Poor little Charlotte....

Well Friday my heart nearly broke in two.

Fluid buildup again, followed by a chest tube being placed to drain the fluid.  WHY?  This pretty much ruined my day...but Clayton and I finally got the Christmas tree decorated.  A 10 ft tree is a lot harder to decorate then a smaller one.  I think I need more ornaments.

Despite Charlotte having the pleural effusion (drainage) again, she is still able to do the pressure support trials.  You would think that having fluid around your lung would make it really hard to breathe and uncomfortable.  She has been doing awesome with the pressure support trials 5 times a day at an hour a piece. 

We went to go visit Charlotte yesterday.  I think it was the first time it was just us (us with our two kids) since she was born.  It was kinda nice and a very relaxing day.  I didn't get any pictures because Clayton was being very uncooperative about taking pictures.  Oh 3 year olds...

So her drainage is down to around 4 to 6 mls an hour which really isn't that much, but it is still there.  Since they placed her chest tube in they stop feeds (this is the part that is really the worst...she was growing so nicely.....up to 8 lbs!).  They are still planning on doing more pressure support trials and extabating on Tuesday.

Poor baby Charlotte, she just wants to be a normal baby and come home.

Funny guy...

Of course what toddler wants to eat at Thanksgiving...not this one.

He told me he was all done and went and got his rocking horse out.  He was mumbling to himself and no one was really paying attention to him...then I heard him say he was riding Secretariat!  My child loves that movie.

Once we knew what he was doing it was time to show off for everyone.



Did you know...

he was a bucking...

bronco too?

Well in Clayton's world he is.  Ha!  He was quite the entertainer...gotta love the imagination he has!

Thankful?

Today is Thanksgiving, but I am not feeling very thankful...

Sure I am thankful for my family, my house, my job, my friends....ya know the usual stuff.

But really how can I be thankful today without my baby girl home to celebrate with us?  I am thankful that she is up in Chicago the best place she could be and one of her team members is taking care of her today.

Today is going to be a tough day for me and Blake. 

Medical Update:

Charlotte's ultrasound yesterday showed NO FLUID buildup!  I am not sure what the x ray showed to make them check for fluid.  They also could not see the clot, so it must be smaller now.

She did really well with all her pressure support trials (CPAP) yesterday.  Today they are going to do 4 each an hour long today. 

I am thankful that is she is getting better.  Blake keeps calling me "negative nancy" because I just can't get really positive until there is more of an end in sight....

But during my 4.5 drive home (THAT SUCKED!) yesterday....I did see a shooting star.  I am hoping to GOD that was a sign saying the end is near.....and she will be home with us for Christmas.

Have a great turkey day everyone...I will be drinking lots of wine.  :-)

Snug as a bug in a rug...

Aunt Alisha and Taylor just left.  I think they wore Charlotte out with all the fun hair bows they brought...look at this one!  She is the most precious thing I have ever seen.

This momma is not looking forward to tomorrow.  It's Thanksgiving, I could care less.  I already feel like I am going to be on an emotional roller coaster without my baby girl at home.  AAAHHHH....thats about all I have to say about that.

Blah.

Holding my girl...

I got to hold Charlotte today!  She wasn't the most happy girl...but I think she got a little happier with me holding her.

It was short lived because she had to get a sonogram of her clot and her side.  They wanted to check the status of the clot and look at her side.  The x ray this morning showed a little fluid by her lung.  The heart surgeon told me not to worry it is probably just the thickening of the the wall after surgery.  So I am still waiting to hear the results.

She has had 4 pressure support trials so far.  The last two were for an hour long and she did great.

Her  heart rate has been in sinus rhythm since 11/20, so that is a good sign.  Earlier she was so upset that she did have a couple paced beats and some funky rhythm, but is back in sinus now.

From the talk around here it sounds like being home by Christmas is more of a reality.  I am trying to be positive, but at this point with so many bumps in the road....you just never know.  Dr. Backer (the heart surgeon) is like God around here....whatever says goes....and he said she will be home by Christmas.....so we will see.

So proud of my girl...

This sleeping beauty just slept through her first pressure support trial...and did PERFECT!

What is a pressure support trial?  Well they pretty much turn her ventilator off with a little added pressure support to trigger breathing.  She "worked out" today for 15 minutes and it didn't even phase her.  She stayed sleeping the whole time.  Her vitals remained the same.

On older kids they would do this trial for a whole day, then remove the tube.  But on a little baby like Charlotte, it is a lot to ask for them to breathe through a little straw.  So they just do these trials on and off.  

So...she was almost breathing on her own.  I feel like this is such a good step!  They are going to do another session around noon today for 30 minutes.  The doctors are going to continue to do these trials this week.

Monday they are talking about removing her nasal stents and extabating her.  OMG....I will be so nervous for that, but if she keeps up the good work I have a good feeling she will be able to breathe on her own.

The pace maker issue is still up in the air.  Since I got here yesterday she has been conducting sinus rhythm.  Maybe Dr. Backer was right she really doesn't need a pacer.  He is a genius.....I really don't know how he knows so much.

Not today...

I just called the hospital to check on Charlotte and it doesn't sound like they will be extabating her today, but sometime this week.  So I would guess tomorrow or Wednesday!

Saturday they pulled her chest tubes out.  She is one happy girl!

Yesterday they did an x ray and it there is no fluid build up.  The surgery worked.   Something is actually going our way for once.

Today they are going to start her feeds on the monogen formula.  She hasn't  been fed actually breastmilk/formula for quite sometime.  I think they took her off feeds before her nasal surgery, so it has been almost a month.  She does get nutrition through the IV, but I am sure it will be nice for her to have a full belly.

I will be heading up later today.  I am exhausted...this morning I had  really hard time getting out of my comfy bed, not looking forward to sleeping in the chair....ugggghhh!

Plan number 75?

It seems like everyday there is a new plan...but here is the plan as of now.

Her drainage from her chest tube is down significantly.  They will most likely remove the chest tubes tomorrow. (Charlotte will be so happy for that!)  After removing the chest tubes they will do an xray to make sure the pleural effusion doesn't happen again (fluid around her lung).  Once that all looks good she will get to go back on feeds.  The bad part is not my milk :-(.  She will be one monogen formula.  It is a fat free formula.  I am not sure now long she will be on that formula, but I do know that my breast milk is overflowing in the freezer here at the hospital and at home.  Blake was joking he was going to buy another freezer (we have 3), but he might actually have to if he shoots a deer today!

They have been weaning her vent settings to get ready for extabation.  Since she doesn't need a pace maker anymore this is the next step.  I am SO nervous for her to get her tube out.  I think because this part depends on her, not the magic of the doctors.  This will be early next week.

So start the prayers for little Charlotte.

For the drainage to be gone, chest tubes out, feeds going well, then extabation!  Now that would make Thanksgiving a little better for us....and get the goal to her coming home by Christmas more of a reality!

I am totally going to buy and advent calendar and put it on her door to remind all the doctors that she will be home by Christmas.

Staying up here one extra day has exhausted me!  Taylor came for a visit yesterday and Kelly today.  So I have at least had to the chance to get out and have some fun, but I am one tired momma!  I am sure I will have to do a coffee stop in Dwight on my home...it is magic how it wakes me back up.

Way way down...

See this fluid?  It is way way down!  Wahoo...something is going right for once!  She has two little chest tubes in and that is the picture above.  

Monday 200 mls, Tuesday (surgery),Wed 75 mls, Thurs 17mls

Do you see a trend?  The doctors are talking about removing the tubes tomorrow.  That would be so nice for Charlotte, I know they are uncomfortable for her!

Charlotte was awake ALL day yesterday.  She was so tired and fighting it.  I guess she doesn't want to miss anything...

she even got to sit in her chair yesterday.  We were trying to tire her out...but this didn't even work.  She did like sitting in it though.  Notice her hairbow...courtesy of Aunt Tay!  She came for a visit and brought Charlotte all sorts of bows, she loves them!

So far so good!

We finally got to see  her around 6:45 last night.  She looked really good after this surgery and is still looking good.  I totally missed dinner last night, so I ate McDonald's for the first time since I have been here...I got a small fry with sweet and sour and a hot fudge sundae...I would say it was well deserved.  ha!

The doctors are saying so far so good!  Her chest tube output is where it should be and is the yellow fluid which is good.

I have never seen Charlotte quite so crabby.  She doesn't want to be touched and wants to sleep.  I think having these two new chest tubes in is painful.  Dr. Russel said the surgery itself is painful as well.  The nurses are giving her lots of meds to keep her comfy...she just needs her beauty rest!

Update 2

Charlotte is out of surgery and doing great. Dr. Backer said from what they could see they ligated the duct. He explained it as this surgery isn't like fixing a hole in your heart or removing a tumor....they just closed off the duct where the fluid was flowing from. I know confusing....this is where my non medical background comes in to play! After closing the duct the fluid just redirects itself in the body....like magic.

We should know in a couple days if this fixed her fluid issue....please god heal my baby!

Dr. Backer also said he still doesn't think she needs a pace maker....

Sounds like a wait and see game...story of baby Charlotte's life.

So we will wait and see...



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Update 1

Charlotte went back around 3:15. Dr. Schroeder (ent) just came to tell us they put in a new breathing tube for now and everything looks great. Her nasal stents are still in because there is no sign of infection or scaring and the holes are staying open beautifully. Great news. It is also a good sign secretions are coming out through her nose.

Next is the duct ligation...should be another hour.


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Surgery # 4

Charlotte will undergo the ligation of her thoracic duct to stop the fluid from collecting around her right lung tomorrow. ENT will also look at her nose and possibly take the stents out.

Her surgery is second case tomorrow and should start around 2:00 pm. It should take around 2 hours.

If this works she can get her pacer....then we are that much closer to getting her breathing tube out.

Charlotte looks like a chunky monkey today....she is up to 3.38 kg...or 7.436 lbs....wahoo! I think some might be fluid....but that is great to hear. Maybe this will be a good week....I need one!


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Out of nowhere..

After reading stories before bed...out of nowhere.

Clayton:  Mommy go check on baby sister, then come right back.

Me:  Do you want me to go now it is late?  That would be a lot of driving.  I am leaving tomorrow to go be with baby sis.

Clayton:  No, not right now.  Go see her then come right back.

What a special little boy.  I don't know how he understands what is going on but he does!

13 weeks...

Charlotte is 13 weeks old!  This beautiful girl will most likely need surgery next week to stop the fluid from collecting around her right lung.  It has dropped significantly but it sounds like the doctors are going to intervene so they can place her pace maker the following week.  (look at her long eye lashes...and her bracelet looks like a purse strap...ha!)

I am thinking about making a countdown to Christmas and putting it on her wall in the hospital.  I keep telling Dr. Backer she will be home by then....and he knows I mean it.

In my mind I have totally skipped Thanksgiving and could really care less to celebrate it.  How can it be a holiday without my girl?  I will just have to go through the motions and pretend it is just a regular day....which is totally not like me.  I can't wait to get the house decorated for Christmas for Charlotte's homecoming.  If she isn't home by then I don't know what I am going to do...

Comfy cozy...

Charlotte slept all night last night! From 6pm to 7am....the little things that make me happy.  The side she was sleeping is even the side she doesn't like!

So since my last post Charlotte's chest tube fell out...she didn't have one in yesterday...but her xray this morning showed fluiding building up again...so she got another tube placed a couple hours ago.   They are going go keep watching the ouput bc it is decreasing.

The final decision was made that she does need a pacemaker.  In about two weeks they will place it.  They want to be more conservative and place one, bc most of the time she doesn't need it but when she has stress on her body her rate does funny things...so better be safe then sorry!

Her nose is looking good (a little swollen).  They will take her stents out when they place the pace maker.

Charlotte is keeping us on our toes!  Keep praying for my angel baby, she needs all the help she can get.

The waiting game...

Charlotte is dressed and ready to come home today!  I wish.....at this point it feels like it won't be happening for awhile.

She is doing awesome!  I even was told she was "winning."  So I feel like that is a good thing to hear.  This whole chest tube output is just really setting her back.  She is down to around 100 mls a day, which is a significant improvement from last week.  

It sounds like she will need a pacemaker.  She is just all over the place with her heart rate.  They aren't even going to talk about it until her chest tube output is figured out.

We were trying to get a game plan in place today, but it is really just a wait and see game....ahhh...the story of Charlotte's life.  Everyone is optimistic on Charlotte's recovery....but it all depends on how she does to really know the timing.

Once we get the chest tube output gone...

then pacemaker (sounds like she needs one)...

then get her to grow and make her stronger!

then take her tube out....

then learn how to eat...

then HOME!

I feel like this road won't be over for quite some time...

My sleeping angel...

Charlotte is really into her hands being by her face.  It is almost like she is trying to suck her thumb, quite cute.  I wonder if she will be a passie/thumb sucker b/c she sucks on her et tube alot, or maybe she will dislike anything being in her mouth because she has be intibated for 3 months!

Charlotte's chest tube output is dimishing to around 5 mls and hour.  So hopefully that means in the next couple days it will be gone!  The doctors are happy with her progress.  Her heart keeps going in and out of heartblock, meaning she has to use her pace maker.  Come on Charlotte!

I have a had a great weekend at home with my boys and family.  I am not ready to leave my boys tomorrow, but I am ready to see my baby sis....what a struggle!

Gotta love Target...

As you can see...I went a little crazy at Target.  Girls clothes are so fun!

I wanted to add- thanks to those of you who stopped me at Target/Beauty Brands on Friday to let me know you are thinking and praying for us.  Seriously it is amazing how many people are out there thinking of my little Charlotte!  There isn't a day goes by that someone stops me or asks me how my baby is doing....seriously the best gift for my family right now.  Love to you all!

Doing Better...

Well Charlotte is surprising us again.

She is out of heart block!  Her rhythm came back today and she is not pacing.  Her heart rate is 160, right where it should be.

The amount of fluid is decreasing that is coming out of her chest tube.  Mon 600 ml, Tues 450 ml, Wed 350ml. Today seems to be on track with Wed.  They have been playing around with different medicines to decrease this output, and they are happy with the result thus far.

I am so thankful to be able to work from here to spend time with my little princess.  I have really missed my family this week and can't wait to see my boys tonight.

Thanks to everyone for all the texts/emails/comments.  I am feeling a lot more positive now, hopefully we are on the right track again...it feels that way today!

Home by Christmas?

When I got here last night I had a new realization, which was confirmed after rounds this morning.  Our Charlotte won't be home by Thanksgiving, unless there is some miraculous gift from God.  Which at this point there isn't...I am not sure why he isn't healing my baby.  This has been one of those days...

Charlotte has taken 3 steps (feels like 10) back.

The fluid around her right lung keeps collecting and dumping out.  I think they said yesterday she got rid of 600 mls.  That is alot for a little baby.  Her xray this morning showed a little fluid collecting around her left lung...what?  She might need another surgery to correct this issue, but they are trying other measures with medications and steroids etc.

She is now in heart block, which means if she keeps this up she will need a pacemaker.  Her heart rate is in the low 80's...and it should be 130-160's.  She actually is not pacing right now and her blood pressure/profusion is fine....so not sure what that means either.  Putting a pacemaker in is another surgery.

Her two blood clots.  She is on Heprin to break them up, but they might have to some sort of cath treatment.

Then we still have her breathing tube issue.....then learning how to eat.  I thought we were to this point last week.  Now I feel like we are back at the beginning.

We really need some prayers.  I (and Blake) really need some strength.  I am not sure how much longer I can keep up this charade.

Seriously, she is 11 weeks old.
I have only held her 4 times.
I am so sick of pumping, I want to hold and nurse my baby.
I miss my Blake and my Clayton.

I just want a normal life.  Working normally, being home normally with my family.  Thinking about stupid things like what to make for dinner, what needs to be done at home/work, what we are doing that weekend....

Why did this happen to us?  Why did this happen to me?  Why can't Charlotte be a healthy and happy baby girl?  This is not fair...I didn't deserve this.  We didn't deserve this.  Charlotte doesn't deserve this.

I told you this has been a bad day for me...

Blah.