Happy Halloween!

from Charlotte the pumpkin...

and Clayton... 

the Pirate!

Quick Update...

Quick Update…

I am dying to see my baby girl!  I am heading up this afternoon…thank goodness.  I struggled with taking  Clayton Trick or Treating, but since he got to show off his costume to both Grammy’s yesterday we kinda decided to skip it this year b/c he had enough fun doing that. 

Charlotte has been doing great this weekend.  She is still recovering from her nasal procedure.  After that surgery she has fluid around her right lung and has had considerable amounts of drainage come out through her chest tube since they put it in on Tuesday.  I could tell this was really bothering the doctor because she didn’t have these issues before.  Well somehow he figured out that she had a clot in her vein where her PICC line was placed in her arm.  They did an echo to confirm, so she is now on Heprin to take care of it.

So hopefully being on that will get rid of the clot and elimate the extra fluid forming/draining.

The next step is to take her tube out.  At this point I still don’t know when, but it will be soon!  I am really nervous for that…so start praying now!  I know I am nervous b/c if she can breathe on her own that would mean she is closer to coming home!  I know she can do it.  I think this whole fluid issue was just a way to tell us she wasn’t ready yet. 

My Charlotte is back...

My Charlotte is back...

look at those big happy eyes...her feeding tube is now going through her nose rather then her mouth.  I guess it is more comfortable and helping her stent stay in.  You can see her blue eyes more in this pic.

Charlotte has been getting so sad.  She isn't mad like she used to be for things like suctioning her mouth, now she is sad.  Her lip/chin quivers....so cute!  In this pic the nurse is about to suction her and she knows it.

Look what we have!  Charlotte and I have matching bracelets. My family got them for us and I think it is one of the best gifts I could have gotten...so we are always connected even when I am away.

This pic was taken last night (the rest were today- all on my phone) so her coloring looks different, but she looks so cute!

They have been weaning her vent settings more today.  The RT said her vent is just an accessory now.  So she is doing really well with it just guiding her.  

Great day today!

Charlotte is having a really good day today.

She woke up around 1 p.m.  They stopped the paralytic drip after rounds this morning.  She was moving all over so they gave her sedation medicine because she is probably in a lot of pain from her nose surgery.

Speaking of nose I swear (the nurse agreed) that I could hear a gurgling noise from her breathing through her nose (she still has blood draining from her nose).  So hopefully this is a good sign.

She is off dopamine (a heart med that helps with blood pressure).  Oh and they started feeds back up tonight.  They have been weaning her ventilator a lot today too.

It is so nice to see those baby blue eyes today.  She still looks out of sorts(from the pain meds), but the fluid is starting to come off so she looks more like my Charlotte.  She is still having drainage from her chest tube, but that is to be expected with all the fluids she has been getting and her being on a diuretic.

I was talking to Charlotte and we were cleaning her face off and it looked like she was actually sad, not mad how she usually gets.  I think I even saw a lip quiver.....Lindsay (the nurse) agreed with me b/c she knows Charlotte.  But right now she is sleeping/resting/relaxing and I am trying to get some work done....but I keep getting distracted by my little baby girl.  

Thanks everyone for the prayers...I think our last hurdle will be extabation (taking her tube out)...so pray for that.  Not sure when that will be, baby sis needs to get her strength back!

Over the hump...

Charlotte is over the hump...

She was really sick this morning. We got a phone call even before we left the hotel this morning....ugh. I knew when we left last night something wasn't quite right.

As we were walking back to see Charlotte last night we heard the code beep go off...a parents worse nightmare. It is so loud and bad sounding...then I heard room 208. I looked at Blake and said that's Charlotte's room. Instant freakout on my part....well her breathing tube came out. She was fine....but still a scary moment!

They were having problems ventilating her right side. Well she had fluid around her right lung...they had to put a chest tube in this am to drain it.

We finally got to her room this am and there were a lot of doctors standing around caring for her...and they have been in and out all day. She is doing much better now. They have been adjusting her vent settings all day and taking blood gases to make sure she is being ventilated properly. They have her paralyzed so she can heal and relax. She is on a few heart meds again...but her heart has not been the issue at all today...thank goodness...

She is starting to look more like my baby. Last night she was pale And so swollen. She looked worse then after her open heart surgery. Crazy! Now she is pink and looking less puffy...more like my sweet girl!

So I doubt they will try to take her tube out this week...she has had a really rough day and needs to be a her best for extabation.

I am ready for a relaxing night at the hotel...

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Update 2

Dr Schroeder just came to talk to us and Charlotte did great. She did have a complete choanal atresia....complete blockage of her nasal passage. They drilled new holes (sounds so painful) and put stents in to hold the openings open. They put in a new breathing tube and the plan is to extabate tomorrow morning...that is if she recovers with no swelling. They thought she did have a small opening, which isn't the case. So this is actually good news because they are more confident now with her being able to breathe on her own.

Keep the prayers coming she will be able to breathe on her own tomorrow morning when they do the extabation.


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Update 1

The doctors came to take Charlotte to the OR around 1 pm. We haven't heard anything yet. The team told us not watch the clock...but it should take 2 to 3 hours. She won't be extabated until tomorrow most likely because they want her to be able to recover first.


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Moving in the right direction...

Tomorrow afternoon Charlotte is having her nasal surgery.  Yay!  I feel like we are finally moving in the right direction to coming home.  Blake and I have good feelings about this week.  (Dr. Schroeder the ENT doctor didn't call me until Friday night...so we just found out about Monday, but we will take it!)

I really feel like we were sent to Chicago for a reason.  I think God gave her these crazy nose issues to sent us to Chicago to get her full heart repair (not that the awesome drs in Peoria couldn't have done it, but it was such an "exploratory" surgery we just don't know).  I still can't believe her heart really isn't an issue anymore.  She will have to have checkups for the rest of her life, but other then that she is doing great.  They detached her from the pacemaker yesterday...the wires are going to stay in until after nose surgery.  She is still on one heart medicine.

So tomorrow we need A LOT of prayers coming our way.  This surgery is also kind of an exploratory surgery b/c they don't know what exactly needs to be done until they get in there with their probes and look around.  She might need stents or dilations...we don't know.  The doctor did say we could come home in between stents or dialations....what?  I heard that and I was like are you kidding me?

We need prayers to get her through her surgery and to get her tube out!  If she can breathe without her tube that means we could start working on eating...and be even closer to being a family again.  I am worried because she has been on the vent for 10 weeks, I hope it didn't comprise her airway.  The doctors are concerned too because she failed so quickly being extabated the first time.  He said that could have been due to alot of different things....we just don't know! 

She has been such a fighter so far...I believe in my baby Charlotte and I believe that God will end this journey for my family b/c we have been through SO much already, at this point I really can't take any more bad news.  But I will be strong and take what we are given, but hopefully it is a ticket to come home.

We had a great weekend!  This weather is amazing.  Friday night Blake and I got to celebrate a 30th bday with our great friends Kelly and Brandon.  What a nice distraction that was...and a great time!

Taylor, Clayton, and I went to Rader's today to get decorations for the couples shower this coming weekend.  I thought for sure we would have a major meltdown by Clayton Jay...but he was happy doing the free stuff!

My future landscaper...so happy to play with daddy's spreader....I hope we get a couple more of these nice weather weekends.

all these pics were taken on my phone.

Bouncy Chair...

Yesterday Charlotte got to be in a bouncy chair.  After her bath we got her all dressed up and looking pretty!  I can't wait to dress her up everyday. 

She liked being even closer to her birdy mobile.  She loves that thing!

Updates this week:

She is tolerating her feeds really well.  They went from continuous feeds of 20ml an hour fortified with 24 kcal formula to bolus feeds with the breast milk fortified with 27 kcal formula.  A bolus feed is more like a bottle feeding where she gets 40ml in an 30 hour time span every 2 hours.  Breast milk is only 20kcal...so add formula to help her gain weight.  Cardiac babies burn more calories b/c their bodies work harder then they should.  She is tolerating the bolus feed well, no spitting up and peeing/pooping normally!  Hopefully feeding will be something we don't have issues with. 

So yesterday was a very interesting day at the hopsital...

We have been waiting all week to hear from ENT the exact date of her surgery next week.  Everyone was counting on Tuesday.  They called and have her scheduled for next Friday which is unacceptable from everyone's standpoint in the PICU.  So the big wigs are going to talk and persuade the ENT doctor to get it done Tuesday like planned.  They were even telling me it could maybe be done today, but that isn't an option anymore.  I could tell the the director of the PICU was trying to be politically correct when he was talking to me, but I could tell when he was on the phone he was irate!  Her surgery could  have been done this week...so waiting until next Friday puts us a week and a half behind!

So I will be talking to Dr. Schroeder today and putting my persuasive mommy pants on to get her surgery for Tuesday.  I wish I could have spoken with him in person rather then on the phone....wish me luck!

Wiggle Worm

As you can see (I FINALLY got the video uploaded) Miss Charlotte loves to wiggle around.  I love watching her and thought everyone should see her.  She is wondering what her silly mommy is doing.

Still no date for her nasal surgery, hopefully I will know tomorrow.  Everyone is ready for her to get it done, so it just needs scheduled.  The pacemaker wires will stay in until after her next surgery.  Still no paced heart beats!

Her belly issues/blood in her stool was nothing.  Thank goodness!

Clayton got to go on another field trip today to Rader's.  I am so that mom that would be at every event, so stuff like that makes me sad that I couldn't go!

And most importantly I got to hold my sweet baby girl today for a couple hours.  I haven't held her for over 4 weeks....so it was a good day for me!

A new discovery...

my baby album...

I think Charlotte looks just like my baby picture!  What do you think?  I got it out yesterday and was shocked....her nose is exactly like mine!

Charlotte is still off her pacemaker.  I think tomorrow marks the "she doesn't need one" mark.  So that is freaking awesome!

I think Sundays are always hard days for me because they are suppose to be family days, but I haven't had one in 9 weeks.  It is really hard for me to see people post pictures (which I love looking at) of their babies younger then Charlotte at home with their families.  Or posting or talking about what they are doing at that age.  It is just really hard.  I am so sick of this whole situation.  It doesn't help that it feels like I haven't seen Blake in months because he has been in the fields.  I just keep telling myself this isn't permanent....hopefully she will be home by Thanksgiving....or at least before the weather gets bad...that is my new worry.

Today they did tell me that they tested her stool for blood and it came back positive.  There hasn't been any visible evidence...but I guess it is still there.  She doesn't have any signs clinically of having any intestinal issues, and her belly xray came back normal...so who knows.  Pray it is nothing please....

Working this week was great.  It actually made time go by faster which is a plus.  I have a desk right next to my baby so I can work and stare at her at the same time.  :-)  I am so lucky that my job allows me to be with my child who needs me the most. 

Oh one good thing this week....I have had two different nurses tell me that my voice calms Charlotte down.  That makes me feel awesome!  I can't wait to see her tomorrow.

Officially a family...for 4 hours anyway

Today was a HUGE day for our family.  I finally got to have my kids (sounds weird saying that) in the same place.  I was an emotional mess when Clayton walked through the door of the PICU.

He walked into the room and wanted a chair right up next to his baby sister so he could give her a pink John Deere blanket.  He loved telling us what she was doing.  If she was moving or opening her eyes he told us.

 He thought her mobile was cool and noticed things in her crib that were his, like his waterfall.

I didn't bring my other lense so we couldn't get a family picture, but you get the idea.

Clayton was very interested in her hand splints.

He saw Blake suction her secretions around her breathing tube (Clayton called it her owie), so anytime he saw the spit bubbles he was very concerned and wanted someone to get them.

 He wasn't afraid to touch her or love on her.  He got to meet all the doctors and nurses.  Of course everyone loved talking to him and meeting him since I talk about him so much.

Since this is a children's hospital they know how to treat little ones right!  Clayton got to go up to the playroom and play for a little bit while Charlotte got her echo.  Since he was good he got to go to the toy closet and pick out some toys.  He had so much fun!

I am glad I planned to leave with Blake and Clayton b/c there is no way Clayton would have left without me.  He feel asleep on the way home and woke up for 5 seconds to ask where I was.  He wanted to make sure I was still with him.  It was nice to have someone drive me home....I got to take a little nap too.

Today was the best day so far since Charlotte has been in the hospital.  It was such a gift to have my family together for the first time.  I never imagined Charlotte would be 8.5 weeks before it happened.

Ta da

I didn't want to jinx Charlotte today....but she has been off her pacemaker all day conducting a sinus rhythm...wahoo!

The cardiologist told me this morning there was only a 97 percent chance it would come back two weeks out. So they were getting serious about a pacemaker....

I think she is telling us ta da....I am a big girl and can do it myself!


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Today

Charlotte's nurse sent me these pics today.  I love that she is taken care of by her favorite nurses (mine too) while I am not there.  I can't wait to see her tomorrow.  She looks so great in the pics.  I told Lindsay she looks kinda chubby!  I love the pic where she is asleep....she put her hand up like that all by herself.  I am dying to see my girl...

Truly fall when...

when you get to have this much fun playing in a pile of leaves...

Twins?

My mom was visiting Charlotte today and sent me this picture.  When I got it I thought she looks so much like Clayton!  Well what you can see of her face anyway.

Clayton as a newborn.  He has 2.5 lbs on her!  I think they have the same face shape/eyes.

She is still doing awesome.  I think sometime soon they will starting talking about putting a pacemaker in.  Her heart rate is there just really low...around 80-90 and should be around 130-150...so keep praying it will come back!

I am enjoying the weekend home with Clayton...this weather is amazing!  I am about to go outside and sit in the sun and enjoy my last day of  maternity leave.  I start work tomorrow so I can take time off when she gets to come home!

In Chicago you don't see...

a sunset like this.  We are so lucky to live out here...