Let's Support Ms. Melanie

As many of you already know, the Pilotte family is a very special family.  They have always supported their family & friends.  Now it is time for us to support them.

After many tests & exams, Ms. Melanie was diagnosed with ALS/PLS in September 2010.  She has been amazingly strong through this journey.  She has so many wonderful friends & family who have been there for her through her everyday walk.  We ask that you help her & the so many others who are touched by this disease by joining us in walking &/or donating in her honor through the ALS Louisiana/Mississippi Chapter Association walk fundraiser.  The walk will take place on Saturday, October 1st at Zephyr Field & LaSalle Park.  Check in is at 9:00am.  The 1.8 miles walk starts at 10:00am.  As you will see there is no registration fee for "Walk to Defeat".  It is strictly donation based.  There will be Melanie's Team tent set up in the park as a meeting place before the walk.  Melanie's Team t-shirts will be available the day of the walk.  The link at the bottom of the page will take you directly to Melanie's personal donation & team joining site.

God has blessed their family with such a beautiful woman.  She amazes everyone daily with her optimism & courage.  Please pray for her & her family.  We encourage you to forward this to anyone you think would want to contribute.

Click here for Melanie's Team Site

We're Home

I know it’s been a while since I updated but we have been very busy. 

Kamryn was able to come home from the hospital on May 21^st after Landon & I spent the night with her at the hospital.  She is still on caffeine and still experiences some suck apnea. 

Karsyn came home on May 28^th.  Landon & I also had to spend the night with her so we could learn how to use the apnea monitor.  The doctor at the hospital says she’ll have to be on the monitor for 3-6 months.  She continues to get her daily dose of caffeine.

At their doctor appointment this past week, Kamryn weighed 6 lbs 12 oz & is 18”.  Karsyn is 5 lbs 8 oz & is 17.1”.  They will get their 1^st shots next week.

Along with the regular pediatrician appointments, we have to go the eye doctor every 2 weeks until their retinas are finished developing.  It’s a rather stressful appointment.  They get their eyes dilated which can take hours.  Then the doctor uses a tool to hold their eyes open & sticks another instrument in their eyes to check the retina. 

While we cannot wait for Kamryn & Karsyn to meet all their wonderful family & friends, please understand that we are following the doctor’s orders that they not have any visitors for a while.  They simply can’t afford to get to get sick.  Even though they are almost 2 months old, in preemie land they are -3 weeks (yes, that’s negative 3 weeks old).

Kamryn's 1st car ride

Karsyn's 1st car ride

Kamryn's 1st bath

Karsyn's 1st bath

A Week of Firsts

This past week we experienced some firsts. 

As I told you last week the doctors gave the OK for Kamryn & Karsyn to begin bottle feeding.  Kamryn is now taking all 8 of her feeds from a bottle.  Karsyn is up to 5 bottles a day & will be increased when she can take the entire bottle in 30 minutes for each of the 5 bottles. 

They are both still on caffeine.  While Kamryn has not had a breathing episode in quite some time, Karsyn continues to experience some mild ones in which she quickly recovers.  She has had a couple while trying to bottle feed.  The doctors decided to increase her caffeine by 20% today.  It takes about 4-5 days for the caffeine to work. 

I also had a first this week.  Since my little angels are doing well with the bottle feeds, I was allowed to introduce them to breast feeding.  It was an experience for all 3 of us & will take a while for them (& me) to get the hang of it.  But thanks to their wonderful nurse today, it was a good experience.  I couldn’t have done it without her.

Kamryn & Karsyn are continuing to grow each day.  We were actually given a bag of clothes that are now too small for them.  Landon & I didn’t think that would happen so soon.  Kamryn is now 5 lbs 7 oz.  Karsyn is now 4 lbs 10 oz.

Even Landon had a first this week.  Nurse Melissa got him to change his 1^st diaper.  I told you she wasn’t giving up.  Of course, he hasn’t changed one since.

Please continue to keep us in your prayers.  We are praying that they quickly outgrow the breathing episodes and they get to come home together.  As it is today, there is a good chance Kamryn will come home before Karsyn.

Happy Mother's Day!

Kamryn & Karsyn have had a busy week. 

Kamryn now weighs 4 lbs 9.2 oz and is 16.5” long.  She has not had any breathing episodes but is still on caffeine.  Kamryn no longer likes having a feeding tube.  She generally pulls it out once a week.  Of course, she decided to this on Wednesday while I was visiting.  It was more traumatic for me than it was for her.  The dermatologist says her birthmarks are OK & they will recheck in about a week.

Karsyn now weighs 4 lbs 0.6 oz and is 16.1” long.  She continues to have very minor breathing episodes which she generally recovers from without any stimulation.  She had to have blood work & an x-ray this week because of blood in her diaper.  All tests came back normal; she has an anal fissure which will heal on its own.

When we arrived today, their cubicle looked different.  They are out of their isolets & are now sharing a crib.  Here’s a picture of their new bed.

Kamryn is on the left.  Karsyn is on the right.

Their new bed was not our only surprise.  The doctor gave the OK to introduce bottle feeding.  The nurse was kind enough to wait until we got there so I could give them their 1^st bottles.  They did great and each took about a ½ ounce.  They will try one bottle feed a day for a while.  Here are some pictures.

Kamryn’s 1^st bottle

Karsyn’s 1^st bottle

I hope you all a wonderful mother’s day.

Love,

Kelly

3 Weeks . . . .

Kamryn & Karsyn will be 3 weeks old tomorrow.  They continue to grow every day.  Karsyn now weighs 3 lbs 4.2 oz (yes, the 0.2 oz is a big deal) & Kamryn weighs 3 lbs 12 oz.  Kamryn's umbilical cord fell off yesterday and Karsyn's eye looks so much better.  We are approaching 48 hrs of no breathing episodes for both Kamryn & Karsyn.

On Thursday they were actually able to start wearing clothes.  Although they do have some growing room, they look so cute in their preemie clothes.  During our visit they maintained their temperature so well that the nurse let them take a short nap together while they waited for their next feed.  Landon & I were so happy they could be together for a little bit.  Here are some pictures.

The next picture is of me changing Kamryn's diaper.  Nurse Melissa wanted Landon to change Karsyn's diaper but he couldn't be convinced.  I have a feeling she's not giving up that easily.

Here's Karsyn wrapped up in her turtle & frog blanket.  For those of you who don't know, before we knew they were girls, Landon called them his "little turtles".

In between his business trips & marathons, Pawsie was able to finish their bedroom furniture.  Now we have the daunting task of getting their room ready.

Prayer for Premature Infants

Prayer for Premature Infants

By Clinel “Sissy” Davis

Our gracious heavenly Father, thank you for this precious child that you have given this family.  Lord, we know from Your Word that you never leave us or forsake us.  We call upon Your name for comfort in our hour of need for you are our strength, our only refuge, and we seek peace in this time of uncertainty.  Our hearts are overwhelmed with fear and doubt.  You, Lord, are the Great Healer.  We ask that You pour out Your great healing power on this precious little lamb of Yours.  Bless and keep this little one surrounded with Your abundant love and mercy.  This is the prayer of our hearts.  We ask these things in the precious name of Your Son, Jesus Christ.  Amen.

Movin' On Up

Last night when we arrived at the NICU, we were greeted by Nurse Holly smiling and telling us our babies had been moved across the hall to the step-down NICU.  We were thrilled.

Kamryn gained 1 oz overnight bringing her weight up to 3 lbs 6 oz.  Karsyn gained 1.8 oz bringing her weight to 2 lbs 15.8 oz; we're calling it 3 lbs.  If they continue to gain weight tonight, their feeds will be increased again tomorrow.

Karsyn had one breathing episode today but recovered quickly.  She also has some drainage from her left eye.  The doctor believes it is just a clogged tear duct & they will do periodic massages.

Kamryn has not one, but two birthmarks.  One is on her belly; the other is on her backside.  A dermatologist is scheduled to take a look at them this week.

Here are some pictures we took yesterday.

Proud Daddy

Karsyn Ann



Kamryn Rose