Good news

Charlotte got a head CT scan this morning and the results were good. The spot they thought was a brain bleed was actually an old spot in her brain that indicates a little stroke. The word stroke is a scary thing but the doctors aren't worried about it bc she doesn't show signs of having one. A babies brain is very resilient and they think she will be fine, but will continue to watch her closely...this could have even happened in utero.

Other then that her stats still look really good and everyone is pleased with baby sis. (Clayton still calls her baby sis)

I included some pics of Charlotte and some of her room for everyone to see.

Once again, God is good...so hopefully this wasn't a step in the wrong direction. I am exhausted and ready to see my little buddy...I need a break from Chicago, but I will miss my baby terribly while I am gone...I can't wait for these feelings to be gone once she is home.

More prayers needed...

I wasn't going to post anything today, because we don't know a lot right now, but Charlotte needs more prayers. Today during a routine head sonogram they found a brain bleed. I truly believe prayer has helped Charlotte so far, it feels like a dream that she got the full two ventricle repair.

Everyone taking care of her have been very reassuring to me that it is nothing bc her stats are perfect and she is responding normally to stimulation. She has no signs other then low platelets, which we thought was from getting so many blood tests. She opens her eyes a little and moves her arms and legs normally for being sedated. They did another sono of her temples and that was normal. Tomorrow they are going to do a CT scan so we should know more. Hopefully it is nothing....please God.

There is always something...I just want to feel like I am closer to bringing her home seriously.

On a positive note there are signs that her rhythm is coming back, but that could take 10 days to really know. I also got to see her echo that was being done today and her heart looks likes normal heart now with four chambers....total craziness!!!


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Quick Pic

Just thought I would post a quick picture of Charlotte for you all.  She is still doing extremely well and just starting to show signs of waking up.  Everyone is very pleased with her progress so far.

Day 1

Thanks everyone for following Charlotte's journey yesterday...my blog had over 600 hits yesterday.  This has made me really realize how powerful prayer truly is!  Thanks everyone!

Charlotte is doing really well.  Last night the doctors were really happy with her progress.  They have been tweaking the pacemaker because her heart rate was to high last night and this morning it is down to a more normal rate of 150.

She is now off the medicine that has kept her paralyzed since last night.  It will be nice to see my baby move around.  Charlotte is on a ton of different medicine for her heart...actually looking at the pumps it looks like she isn't on as many.  Before surgery her vent settings was in room air around 20%....she is currently on 60%.  They are giving her a rest with more oxygen.

One more techincal thing....her NIRS before surgery were in the low 30's...and now they are between 50 and 70's.  The NIRS monitors the blood flow to her body...so the increase is good.

I might post a pic...but baby sis is kinda swollen.

All I know is God is good...we are so lucky so far, but the journey isn't over.

Update 3, 4, and 5

Sorry...here is update 3

They took her off bypass once to test the mitral and tricuspid valves. The valves are the consistency of butterfly wings....and her heart is the size of a walnut...some random info for you all! The tricuspid valve didn't have enough blood flow so they had to put her back on bypass to take some sutures out.

Update 4

She is completely off bypass and doing great! I just can't believe that we are actually getting good news for once. Her heart is beating a little slower then what they would like, so she is on a pacemaker....which is normal from such a major surgery. Dr. Backer is going to watch her for the next two hours and make sure her heart is functioning properly before leaving the OR. He hates having to go back in and fix bleeding issues.

Update 5

She is closed looking good. Dr. Backer just came and talked to us....he said they got the best outcome possible. He told us it looked like an explosion went off in the middle of her heart...I can't imagine what that looked like. He is concerned about the nerve in the heart bc she is to little to know where it is...if that got injured then she might need a pacemaker the rest of her life. Please pray that she doesn't need that....but at this point we will take what we can get. The next 24-48 hours will be rough for baby Charlotte....pray that everything turns out okay. She has been so strong so far....I don't have any doubt that after all this she will be perfectly fine....but obviously God is watching out for our angel bc he gave us such an amazing surgeon to fix her heart.

What a day...7 hours of open heart surgery... I will update in a couple hours.

Keep Charlotte in your thoughts and prayers for the next couple days!

 

Update 2...God is good!

Okay just got update 2!  God is good...they are going the two ventricle route!!!  wahoo...finally some good news for once!  This is such a blessing!

They ended up taking off the pulmonary band because it was causing the valves to regurgitate, which is not what they wanted.   

She is on the heart and lung machine while they are doing the repair.  So the real test will be once she is coming off the machine to make sure her heart will function correctly.  The nurse practitioner said this repair will cause her body to work more initially, but it is definilty the repair everyone wants for long term.

We should get updated again around 1 p.m.

THANKS EVERYONE.....God is good!

Update 1

Charlotte is open and Dr. Backer put a band on her pulmonary artery to restrict the blood flow to her lungs. They are doing another echo to see how her valves are reacting...mainly her pulmonary valve.  So right now they are testing options to get the two ventricle repair!  We still don't know the route they are going to take, but the surgeons are doing everything they can to do the two ventricle repair...it is the best long term option.  Keep the prayers coming.  We should get another update around 10:30.

Charlotte's big day...

Charlotte was sleeping so peacefully this morning.  Blake and I decided it is nice that she wasn't scared.  The surgeons came in to talk to us and they wheeled her to the OR around 7:15.  We should get our first update around 9 or so....  Keep the prayers coming!

Tomorrow is the big day

Tomorrow is Charlotte's big day....open heart surgery at 6 weeks old. Craziness! Blake and I spoke with the surgeon Dr. Backer today and he said they are going to come get her around 7:30 am. I am excited and scared to death at the same time. Hopefully they will be able to do the two ventricle repair And this will be the last surgery she will need. If they can do that full repair, then they will be able to be more aggressive with the course of action for her nose. We are hoping and praying that they can do the full repair. It would be nice to have something good happen for once. We will find out through updates from the nurse practitioners during her 4-6 hour surgery. Keep sending the prayers our way...mainly for Charlotte, but a couple for our family....tomorrow will be a tough day! I will keep everyone updated here...so check back. Love to you all!

6 weeks...

Charlotte is 6 weeks old today....way to long without being home!

Please start sending thoughts and prayers our way for her surgery on Tuesday.  She will have open heart surgery and it will hopefully her last with a two ventricle repair.  Pray that the surgeons will be guided to chose the correct repair for Charlotte.  We would love a two ventricle repair, but at this point we will take what we can get!  We just want to be closer to bringing home our precious angel.

Thanks everyone for your thoughts, prayers, love and support.  Blake and I are truly amazed at the love that surrounds our family!

Harvest time!

The boys got in the fields today by our house.  My dad does a ton of seed corn, so he has been busy picking.  This is the first time our combine has been out and about! 

And someone was really excited about it.

The boys were testing the first cut.

I could just eat them up...

Clayton climbed up on the combine all by himself, then he was telling me he was scared!  Yes I know he is wearing a JD shirt on a Case combine...its okay...that's how we roll!

Clayton wanted help down.  I got up to help him...then we were playing inside the combine.  I got scared and took the key out (probably a good idea anyway) and thought I would have no clue what to do if it got turned on...kinda scary!

This time of year would be even more magical if a certain princess where home to share it with.  :-(

The "punkin patch"

Today I took Clayton to Rader's pumpkin patch.  Nothing is cute then Clayton calling it a "punkin patch."  To bad Charlotte wasn't with us...she would have liked it.

 Clayton liked the corny bins.  It reminded me of my auditing days, doing grain inventory...yuck!

 I think his favorite activity was the big slide...look at that face.

He also like climbing the hay bales and hanging off the rope...yelling help!  He really needed help, and kept doing it...I guess he knew I would be coming to his rescue.

 He loved...

 pretending to be a ...

 cowboy!

Next time we need some little buddies to come with us!

Hot Pink is her color of choice...

Charlotte wants to say hi to everyone and show off her hot pink bow.  I really think hot pink is her color.  Somehow she has been keeping them on her head so nicely...I think she likes them too.

Her surgery is still scheduled for next Tuesday.  I was kinda worried they would push it back because of her belly issues, but her belly has improved with antibiotics and by giving her intestines a rest by stopping her feeds.  She is still getting her nutrition, just none of my millk.  They will start feeds again after her surgery.

The physical therapist and occupational therapist have been coming to work with Charlotte twice a week so she doesn't fall behind from laying in a bed all day.  Today I helped the occupational therapist work with Charlotte.  Charlotte tolerated it really well and is reaching all her milestones (nice to hear good news).  She didn't mind being handled or sitting up (while being held). We rolled her from side to side by guiding her muscles to do the work.  She also is doing well and holding her eyesight on me when I am talking to her and touching her hands together in the center of her body.  These are all things I didn't think about with Clayton, but are very important for Charlotte for her development.

My goal for the week is to figure out my maternity leave....sigh.  I have decided it is more imporant for me to have time off with Charlotte when we can bring her home.  I think sometime soon I will start working a couple days a week (I can even work from the hospital) and taking a couple days PTO.  At least is will get my brain funtioning again...ha!

Hair bows...

We have a date!  Charlotte is scheduled to have her first (and hopefully last) heart surgery on Tuesday Sept. 27th.

This weekend she did develop a fever, which went away as soon as I was notified.  She was also having bloody stool, which after xraying her belly she is showing early signs of NEC.  This is common in premature babies because their intestines aren't fully developed and doing feeds can cause irritation.  They are giving her antibiotics to get rid of it.  The Dr's aren't worried about it and think she will still be able to have her surgery next Tuesday.

As you can see she is doing wonderfully and looking really really good!  I am happy to be here with my baby.

Firetrucks!

We were going to have Clayton's 3rd bday party before Charlotte came...but that didn't happen.  Blake and I threw together a party for Clayton's bday this weekend...even a firetruck came!

Clayton made us sing Happy Bday twice for him...so cute!

A Carol Jones speciality...

This party was the easiest party I have even thrown...and I think it was the most fun.  I wasn't stressed and we just enjoyed having family and friends over!

Clayton had a blast with all his buddies.

Thanks for celebrating with us!

Digger and Bugs...

Here is the bday boy on his digger.  If you ask Clayton it is his backhoe.

Blake needs to build him a sandbox, but for now Clayton can dig in Odie's dog house. (and no Odie is a good dog and doesn't mess up his dog house...if you know what I mean)

He dug and dug and dug all morning!

 then we moved onto playing with bugs...actually Locust shells.  I had to force Clayton's finger by the bug shell...so it is kinda hard to see the shell.  This tree has seriously 500 shells on it...so weird.

He was scared of the shells at first, but after seeing Blake and I put them on our shirts he decided it was cool and he needed to do it too.  (this picture kinda creeps me out...but they are just shells!)

then we smash them.  He loves doing that...what boy wouldn't.

Mommy/Clayton day

Who knew that the Lion King would get re-released on Clayton's bday?  I thought this would be the perfect opportunity to take Clayton to his first movie (I guess we missed Cars 2). 

To start our fun Mommy/Clayton day...I picked Clayton up from school this morning so he could take Cars cupcakes and have a birthday party.  Then we went to McDonald's play land.  I couldn't believe when I said go down the slide two more times he actually listened!  On our way home we picked up a Papa Murphy's sausage pizza per Clayton's request.  Once Clayton took a nap at home we went to the movies!  He did so well and sat through the whole thing, part of it was on my lap (which I loved).  The preview kinda confused him b/c he really wanted to watch some Penguin movie that came on first.  After the movie we stopped at Farm and Fleet to get Clayton a belt. His pants are always falling down.  We are already having the length/waist issue.

Once Blake got home from his fire call we let Clayton open his present.  Not sure what is wrong with me, but I had no energy to wrap it and we thought it would be fun for Clayton to help Blake put it together. 

We got him a sand/dirt digger.  He loves Calvin's....could spend ALL day on it.  He was so excited.  (notice Blake and Clayton are sitting the same way...Jason Grieder came over later and he was sitting the same way, must be how the Grieder boys sit).

I had a great day with my now 3 year old boy...I know he did too. 

3 years old...

My baby boy is 3 today.  Seriously how did that happen?

I took these pictures hugely prego before Charlotte was born.  It was so hard to chase him around and get in different positions to get really good pictures.

and of course he wasn't cooperating....what a face.

I love this picture. he looks so sweet and innocent.

My two boys...

Clayton has been such a trooper through all the craziness going on lately.  I let him have two of Charlotte's blankets (or nonnies) and he sleeps with them and carries them everywhere.  He knows he has a baby sister and knows what she looks like, but still hasn't met her yet.  Hopefully we can find a time soon that will work.  He understands that Charlotte is in the hospital with the doctors.  He even said to me the other day, "Mommy we need to take care of baby sister." I told him yes we do at home.  He refers to Charlotte alot as baby sister, because that is what we called her before she was born.

Clayton is the most lovable little boy, and such a stinker.  I really think he is to smart for his own good.  He asks a million questions all the time.  It is so funny how you can have a conversation with him and he has opinions about things.

He is 100% potty trained.  He had a couple accidents here and there, but it only happened with Blake and I and I think it is a rebellion in the changing situation, but in the past two weeks he has been great. 

Clayton officially knows more about farming then me.  It is so funny...he knows the exact name of every piece of equipment.  He definitely knows more about picking corn then me.  We usually talk about farming while driving in my car. 

Next week (I think) he is moving to the 3 year old room at school.  I know that just because you are 3 doesn't mean you get to move...but he is ready.  I will have to ask all the criteria, but I know they have to be potty trained.  He has a very good vocabulary and I would say everyone can understand what he is saying.  The teachers make examples of him so the other kids will listen and behave like Clayton...this makes me proud.

Since I am home today, Clayton and I are going to do fun stuff all day...maybe go see the Lion King.  I wanted to take him to Cars 2...but that isn't in the theaters anymore...oopsy!  I will ask him what he wants to do to...should be interesting!