Monday, April 30, 2012

Fun things

We had a great weekend!  Claire is attempting to eat with a spoon by herself which is a big accomplishment!  It's a little messy but she is learning.





Sunday, we enjoyed having fun at Connor's 4th birthday party.  Claire went straight for the steps and then the chickens.  She said "who needs toys when you have farm animals!?" 




Trent and Claire started playing jump rope when he got an even better idea.....


To walk around with Claire like she was a horse/mule and he was a farmer pulling an old plow. It was  funny and Claire thought so too.  They walked around like this for a while.  I am sure people thought we were crazy...





And when the party is right beside your Daddy's organic produce fields, you just walk over and check out the lettuce during the party.


Here is a video of Claire with the chickens and saying "chicken."

video


We had a blast at the party!

Claire fell today on the concrete and scraped up her knee.  Granny said she did good with it though, and she doesn't act like it bothers her. 

I was lucky enough today to break free of work for my lunch hour and eat lunch with a dear friend.  It was so good to catch up with her and hear about her new baby boy on the way.  It's funny (not literally) how during this journey, some friends come and go, but some friends stick beside you.  She is one of those that gets it and what we have been through and I am thankful for that.  It did me good to have that little visit today.

And there a few things brewing in my mind, but I just can't decide whether to post them here or not.  I usually use the blog to vent and speak my mind.  But I am just not sure if I should post my thoughts on this topic or not.  So time will tell.  It's one of those things that bothers me and maybe it shouldn't. 

Anyways, that's what we have been up to these past few days!

Love,
The Scott Family


 

Sunday, April 29, 2012

Busy

I feel like I am out of the loop.  I haven't been able to blog or follow anyone's blog this week.  We have just been busy with work, busy with family time, busy with life.  Sorry for no updates.  Not much really going on.  Claire is just growing and changing every day.  She has been extremely clingy to me lately and I am not sure if that is a phase or an aftermath of being sick.  I cannot even walk out of the room without having a meltdown. 

And speaking of meltdowns, she has started falling on the floor and having a hissy fit when she doesn't get her way.  Is the terrible twos starting early in our house????

We are looking forward to celebrating Connor's 4th birthday today and just taking it easy.  May is going to be a busy month, so we are trying to gear up!

Please continue to keep Ryland in your prayers.  Especially for feeding tolerance.  He seems to be doing awesome heart-wise.  And also keep Caroline and baby Conner in your prayers as she remains on bed rest. 

Hope to be better about updating this coming week!

Love,
The Scott Family

Monday, April 23, 2012

Visiting

Sunday, my mom and I went to Durham/Duke to visit Ryland's family.  It was a nice surprise and such a privilege to actually get the chance to go back and see Ryland himself!  But more on that in a minute.

The whole ride up to Duke was just weird.  It was weird because Claire was not with us (I didn't want to torture her with the car ride or the hospital scenery).  It was weird because we were going back to the PCICU.  I was not expecting to feel so anxious or so strange going back.  We go to Duke all the time for check ups and appointments.  What was the big deal?  I honestly don't know.  But I was so anxious. 

Walking down the tunnel felt strange.  I didn't have my huge book bag on that I carried up there every day while Claire was there.  I felt naked without it.  And I didn't have Claire and her huge stroller with our 19 bags that hang on it or are stuffed underneath it as I tend to pack a little "heavy" most of the time. 

Once we got to the PCICU and got to see our family and hug their necks, I felt a little better.  They all looked so relieved that Ryland's surgery was over and that he was doing well.  We talked for a little bit and then Ryland's mom offered for me to go back and see him.  I told her that was ok, I did not have to do that.  I didn't want to take up someone else's time with him and had not expected to see him.  But she was so kind in allowing me to go back.

It was like old times.  Hand washing, antibacterial foam, beeps, smells, familiar faces.  I actually must have gotten some of the soap or foam on my sleeve of my shirt because I smelled it all day and it would create flash backs.  Seriously. 

But Ryland was perfect.  PERFECT.  Beautiful child of God with his hand crafted, specially made heart.  I looked into his eyes and saw the same fight and determination I saw so many times in Claire's eyes.  It's funny, I didn't even look for his scar until Robin showed it to me.  It looked a lot like Claire's except he had some internal stitches sticking out.  He seemed so much smaller than Claire did when she had her surgery.  His sats were 100%.  He was hungry.  His blood pressure was a little high but they were working on that with meds.  No drainage tube.  No breathing tube.  And I think the pacing wires came out today.  I imagine this baby will be home before they know it. 

It was great talking with Robin and her family and sharing stories.  No, it's not something you ever dream about.  Those many years ago at the Stevenson family reunions in Pamlico County - when we would all hang out together.  Who would have thought that we would be tied together by this uncommon bond - being heart mothers.  I believe God places specific people in your lives for certain reasons.  I  wrote a post about that over a year ago.  And I still believe that to be true today.

I hope Claire and our family can be a source of inspiration for Ryland and his family.  I hope this unexpected connection between our children can bring family closer together.  Ryland's aunt and I talked about even all getting together and writing a book for heart moms!  :)   Time will tell!

After we left Ryland and his family, we headed to the 7th floor to visit Caroline and baby Conner.  My mom hung out in the waiting area while I went to visit.  Caroline has a nice "cozy" room and I found her working hard at decorating her countdown calendars (counting down to certain week goals, etc for Conner).  She is a little over 24 weeks with Conner and has been on bed rest at home for 6 weeks.  Her next goal is to get to 28 weeks.  The percentage of survival jumps higher at that gestational age.  Then I think after that her goal is 34 weeks.  But every day and every week are a huge accomplishment. 

I felt so bad for her knowing how hard it was for me to be on bed rest just for 1 week!  But she didn't seem to mind it one bit.  She can see the big picture.  The prize at the end of the journey.  Her baby boy.  I  should have gone out and brought her some lunch so she didn't have to eat hospital food.  I may do that next time if I get a chance. 

We left Duke and were heading to see baby Emerson when we got word that she was not in the mood for visitors!  She had just had her 2 hour newborn photo shoot and must have worn herself out.  So we were disappointed that we didn't get any of her sugar, but hopefully another time.  We visited with Julie and James instead and then headed home.

It was a long day of car riding but it was well worth it.  We enjoyed the visits!  I could tell this morning  though that I was still anxious.  I woke up dreaming about all of my extended family on my Granny Maxine's side (including Ryland's family) and we were all drawing colors out of a hat to see who would win a million dollars or some weird thing.  I woke up with my teeth clinched together.  It's crazy what anxiety can do to you!

Love,
The Scott Family

Please also pray for Mylah, another TOF baby friend of Claire's who will possibly have her full repair any day now.  http://mendingmylahsheartstrings.blogspot.com/

Saturday, April 21, 2012

Farm Girl

Today we took Claire to Parker Farms to pick strawberries.  I dressed her in her cute strawberry picking dress and everything.  I just knew she would have a fun time.  I didn't expect her to actually pick strawberries, but I thought she might enjoy walking up and down the rows.  But she just wasn't into it today.  We will try again some other time!  But we had fun and did get a few pounds of strawberries.  I guess when you live on a farm, the novelty is just not the same....













This afternoon we went over again to visit Connor and Anna.  They were working hard in their yard.  After Claire did her 100 stair steps, she spotted Uncle Franky's tractor and had to "drive".  Connor joined in and showed Claire the brakes and the gas.  Anna was busy helping shovel mulch into the wheel barrow and finding worms. 








Claire then found some of Connors tractors and wanted to play.  I am thinking we need to pull out some of Trent's old tractors and give them to her.  So cute!






Claire is truly a farm girl.  There is no denying it.  And I just love that about her.

Love,

The Scott Family

Thursday, April 19, 2012

Following up

To follow up to yesterday's post.....

Ryland's heart surgery was a "success"!  Thank you for praying for him today!  Please keep him in your prayers in the coming days for quick healing.  And pray for comfort for him and his family.  He earned his Heart Warrior Badge today and we are so proud of him.  We know his family is very proud of him too.

Caroline and Conner checked into Duke today to continue her bed rest journey.  And guess who was her nurse today..... Nurse Tammy!  Yay!  We all know that Tammy is the best labor and delivery nurse EVER.

Our farm got just the right amount of rain last night to help the plants and seeds grow!  Now if our scarecrow tactics will keep the deer out, we will be good. 

Looking ahead to May, lots of fun things going on.  We hope to attend the Duke ICN reunion and see some of our favorite nurses and NICU friends.  I am supposed to work at the Album of Hope table where parents can make a scrapbook page of their child's journey.  These albums stay in the NICU waiting room for families to see how the alumni survived their journey there.  We used to read and look at these albums a lot while Claire was there.  They are a source of great inspiration.  I hope to make a page for Claire this year!!

Also, May will be our collection month for Books for Charley!!!  Please remember to collect new children's books in memory of Claire's heart friend, Charlotte.  This year we get to donate all of the books that we collect to Duke's pediatric cardiac unit.  We are super thrilled to participate!  If you have books, let me know and we will get them from you.  I would love to try to collect a bunch of books to deliver!

The March for Babies with March of Dimes is in May too.  I haven't decided if we are going to do it this year or not.  I REALLY would like to, but to be honest, I hate asking people to donate money.  So we may just gather what we can and walk.  We will see.  We didn't get to walk last year because it was 2 days after Claire's liver surgery.  Any suggestions?

And Claire has about 4 appointments at Duke in the next few months - cardiology check up, special infant care clinic, geneticist, and hepatolgist/GI.  I am praying they all turn out great.  I would be lying if I said I wasn't nervous about her appointments.  You just never know.  And I do not take her health for granted.  We seem to be reminded a lot that you can't take health for granted. 

Thanks again for praying for Claire's sleep habits!  Please continue them!!  Life seems much easier with a good night sleep for everyone. 

And thank you for always praying for our friends.  I know I ask for a lot of prayer!  ;)

Love,
The Scott Family

Wednesday, April 18, 2012

A few things on my mind

Tomorrow(Thursday), Ryland will have his open heart surgery.  Please keep him, his family, the doctors, surgeons, and nurses in your prayers.  You can read more about Ryland and his heart journey at:
www.caringbridge.org/bethstevenson

Also, Caroline Combs (and baby Conner) move into Duke tomorrow.  She will be 24 weeks and is still on bed rest hoping Conner will stay put as long as possible. And that he continues to grow and stay healthy.  Please continue to keep them in your prayers.  You can read more about Conner's journey at:
http://www.connercombs.blogspot.com/

Claire is having fun with the warmer weather.  She is playing hard every day!  We still have not gotten back to our good sleeping all night pattern since she was sick.  I am praying we get back to that soon, because it is wearing momma and daddy out!  :)  She is saying all sorts of new things and knows what you are saying most of the time.  Still no luck on the sippy cup but we are trying every now and then.

Trent has been working hard getting all of the vegetables and corn planted and getting ground ready to plant cotton.  The deer have been in our lettuce and eaten a lot of it.  Please pray for a bountiful year for our farms.  You can read more about our USDA certified organic produce farm at:
http://www.scottfarmorganics.com/  We don't have a website for our conventional row crop farm!

Love,
The Scott Family

Monday, April 16, 2012

A jam packed weekend

We had a very exciting and fun weekend!  We went to the Springfest at the New Bern Farmer's Market where Claire got some new hairbows, saw some animals, and saw some rubber duckies and real ducks.










We celebrated Aunt Doe's birthday, but I don't have any pictures.  Claire was not having it.  She did let me take this picture as we went on a walk through the farm.

Claire had to get on the tractor with Daddy.



And walk through the fields and inspect the vegetables.






We also celebrated Granny's birthday.




And Uncle Phillip and Aunt Brandy got engaged this weekend!!!  See the beautiful smiles on their faces?!  They (and us) are very excited! 



Great Granny Maxine said Claire's hair was like hers. 


 


Great Granddaddy checked out Claire's lunch.


Cutie patootie!

Aunt Julie and Uncle James came to town.



Claire inspected the fields again.


And played with Anna and Connor a little.




We went on a walk.

And, Claire has a new cousin!!  Emerson Wilson Burkhart was born Sunday, April 15th and is beautiful!  We can't wait to meet her!



Love,
The Scott Family

Saturday, April 14, 2012

Ryland's website

You can read more about Ryland and his unfolding heart journey here:

www.caringbridge.org/visit/bethstevenson

Please continue to keep him in your prayers.  It sounds like he has two rare heart defects - a hole in his heart and an interrupted aortic arch.  He should go to Duke today to figure out a plan for heart surgery.

Love,
The Scott Family

Friday, April 13, 2012

Prayer request

Please keep baby Ryland in your prayers (and his family).  Ryland and Claire are 3rd cousins and he is about 2 weeks old.  I don't have the whole story, but I think he was not acting right today so his parents took him to the doctor.  They originally thought he had a bad infection and that it was affecting his breathing.  But after looking closer, they found some heart defects. 

They flew Ryland to Pitt and he and his family are there tonight.  I have talked to his aunt through Facebook and she said they think he may have a hole in his heart and something wrong with an artery.  They are thinking about taking him to Duke tomorrow. 

I can't imagine (well I guess I can) the whirlwind they are going through.  I am so glad they found Claire's heart defects a few weeks before she was born so we had time to somewhat plan for it.  But Ryland's family had no idea. 

Undetected heart defects can be really bad if not caught in time.  If you know any pregnant women, please urge them to request to have the pulse oximetry test done on their newborn at around 24 hours of life before they take the baby home.  It can save their life and is a very easy and inexpensive test. 

So please keep Ryland and family in your thoughts and prayers.  I will try to update when I find out anything.

Love,
The Scott Family

Wednesday, April 11, 2012

Lab results

We got the liver panel labs back yesterday and they had come down a few points which was good.  I think they still may be borderline high, but the doctor called while I was driving so I couldn't write it all down.  But the gist is that they are trending down and that's good.  They will redraw blood at Claire's appointment in about 2 weeks and see where they are then.  Her urine culture came back negative today so that's great too.  She acts like she feels good and her appetite is back!  Thank  you for the prayers!

Please also continue to pray for Baby Conner and his mom and family.  You can read more about Conner at their blog: http://connercombs.blogspot.com/ 

Love,
The Scott Family

Monday, April 9, 2012

Catching up

This will be an attempt to catch everyone up on how Claire is feeling/doing and on our Easter weekend.  Claire seems to be almost 100%.  She is back to doing and acting like she normally does.  She's happy and energetic!  She's eating almost her old diet, and drinking almost what she was before she got sick. 

Claire is still on the antibiotic and went back to the pediatrician today for a follow up appointment.  They had to draw blood again to run metabolic/liver panels to see if they have come down yet or not and they also had to cath her to get a urine sample to test for the UTI and Klebsiella.  Speaking of Klebsiella, I pulled out Claire's medical records from Duke this weekend to see if when she had that UTI in November 2010 if it mentioned anything about Klebsiella.  The tummy symptoms seemed the same - horrible stool smell, diarrhea, blood in stool, etc.  And low and behold, on 11/8/10 she tested positive for Klebsiella UTI.  See, it pays to have boxes and boxes of Claire's medical records!

Anyways, I asked if since she had had this twice already if it meant she would be susceptible to having it over and over.  They didn't know but said it could be a possibility.  But it would be something to look at if this happens again.  Also, we decided today to go ahead and get Claire under a pediatric hepatologist.  I have been asking for this for a year and a half and never really got anywhere.  So I am glad to hopefully get this ball rolling.  I really feel that Claire needs to be followed by a liver specialist.  So we will see how that goes. 

We should get the lab results back sometime hopefully tomorrow for the liver panels.  It may take a few days for the urine culture to grow and to hear back from that, but maybe by the end of the week. 

Claire recognized the doctor's office today out in the parking lot.  Usually she knows where she is as soon as we get in the door.  Today, as soon as she got out of the car, she started crying.  It's pitiful.  But she is so brave.  I cannot imagine going through all that she has in her little life.  Like my mom said, no wonder she doesn't like to be held or held down.  And she probably never will like to be held or held down.  Who can blame her?

On to the fun things!  We had a fun Easter weekend.  Here are some pictures to prove it!

We started out the weekend on Saturday with a community Easter egg hunt and it was a lot of fun!


Ready to find eggs!




Claire and Izzie hunting....



Ava found the candy....


And here is where Claire stole an egg from McKenzie's basket.  And McKenzie was NOT happy!




Connor and Anna found a bunch of eggs!




And these two below....  This is the little boy who kissed Claire a few weekends ago (the blog about love at first sight).  They have the same exact hair color and curls.  And they live about 1.5 miles from each other.  And are 8 months apart in age.  And are both Duke ICN babies.  And his parents and Trent and I are already worried what they will be up to together in about 15 years.......



Here Layn is telling Claire he is sorry for accidentally knocking her down.  He is hugging her.  :)



And here is beautiful Lily...



And the "crew" of me and Claire, Beth and Izzie, Becky and Ava, Paige and Noah. 


Christian and Caden enjoying some snacks...



Grandma and Claire playing pool and hiding from the vacuum cleaner while we cleaned up all of the cookie and goldfish crumbs after the egg hunt.

 


Then Claire and I dyed a few eggs...






The Easter Bunny came!  He brought Claire bubbles, a heart hair bow, "Where's Baby's Easter Eggs?" book, a sippy cup, new utensils, animal crackers, M&Ms, a monkey with bunny ears, and even brought Daddy some Cadbury eggs.






M&Ms!  YES!




Someone really wants Diet Pepsi...



Love my new hairbow from the Easter Bunny!



We ate Easter lunch with my family.  Claire was not into taking pictures, but I tried.



Checking out the tree with Big Daddy.



Hanging out with Daddy.


Can you see Elmo??



And we went to another Easter egg hunt and Claire was the only hunter...





Daddy helped her find eggs...






We had a fun weekend! 

Love,
The Scott Family