Sunday, October 11, 2009

Dear Jimmie- Happy 8 Month Birthday

Dear Jimmie,

Happy 8 month birthday!

This is you right after you were born.

This is you at 1 month.

This is you at 2 months.

This is you at 3 months.

This is you at 4 months.

This is you at 5 months.

And this is you at 6 months.


And this is you at 7 months.


And this is you today!


Your mommy knitted you that hat this afternoon for your 8th month birthday! She's talented!

Look at how you have grown next to your Rottweiler Puppy!



















And look how you've grown in your father's hands!














(Jimmie fell apart and then fell asleep before Rachael and Justin got this picture tonight. This works though you can see how big he is in his daddy's arms.)


This month:

You have gained 1 pound 2 ounces. You are 11lbs 14oz!

You have gained 3/4 of an inch in length! You are 24 1/2 inches long.

Your head is still 16 inches around. I guess you were busy growing tall.

After being hospitalized for a week last month for your feeding issues, you were hospitalized this month as well. You spent 2 days at Children's Mercy downtown. You were there for an Endoscopy and a PH Probe Study. As always you were a real trooper, a brave little man.

You had to be put under sedation for the endoscopy. We were a bit nervous, but you handled it all very well. After the procedure was over and you got reunited with your mommy and daddy you were pretty bummed out.



We didn't blame you though.

Once you were in your room the ph study began. During your endoscopy the doctor had placed a tiny little scope in your esophagus. That scope measured your acid levels while mommy, daddy and the nurses kept count of how many times you seemed to reflux in a 24 hour period.

You were tethered up to the ph probe machine and a sat monitor. You also had an iv in your little hand.







The results of all of this testing were good! Your endoscopy and the biopsies they took of your tissue during it- all came back normal. Just a little bit of inflammation in the lining of your stomach. The ph probe showed that your reflux was finally under control!

So now we know that nothing stands in your way of eating by mouth except your fear and aversion of it. You have become almost entirely dependent on the NG tube for taking liquids. However your mommy started feeding you solids with a spoon this month and you have been so brave and done really great! Sweet Potatoes are your favorite so far, but you also enjoy carrots!



You are also working on drinking from a sippy. You bite and chew the tip and sometimes end up with liquid in your mouth that you swallow. You don't take a lot this way- not enough to get rid of the tube, but it's a good start.

Your mommy is on a mission to get you weaned from the tube, but she needs someone experienced in tube weaning to help her. Children's Mercy is ready to schedule you for a g-tube surgery with the mindset that it'll be a couple of years before you can take all of your nutrition by mouth. However, your mommy is not ready to do that yet. Your pediatrician Dr. S. is supportive of your mommy and is trying to help her find someone to oversee a weaning attempt. We are all praying for just the right person to help us with this goal. Your mommy loves you so much and is very stubborn and persistent in her intent to do everything possible to get you feeding in a normal and healthy way. We are pretty sure you have inherited this stubbornness from your mommy. Your daddy happens to be very strong willed as well so we are thinking you got a pretty big dose of that! If we can get you to change your mind about feeding this will serve you well! (-: It has served you well in your fight to live- that's for sure.

Until then . . . this ng tube and pump are a pretty constant companion.


Your mommy has stopped supplementing her breast milk with formula because you do not tolerate it well at all. You get lots of mucous and are much more fussy with your feeds. You were so bad one week with the mucous we actually thought you might be sick. As soon as your mommy stopped putting the formula in her breast milk everything cleared up! However you are not gaining weight as fast so your mommy has done a lot trying to fatten her milk up.

Your mommy has taken you to a Naturopathic doctor this month who has helped get you completely off of the prevacid by replacing it with probiotics and enzymes. Woohooo! Mommy is also now on a very strict diet to help your digestion. She doesn't eat any soy, corn, wheat or dairy! Your mommy is amazing and selfless in her quest to help you!

The status on your Chronic Lung Disease is the same- AMAZING! It's unbelievable how great your lungs are Jimmie. You have never had an infection in them. Your doctors continue to be astounded about that.

Your doctors are also amazed at your development and strength. Your OT thinks your physical abilities are closer to a 6 month old then that of a 4 month old (your adjusted age). Your mommy can now hold you sitting on her hip in one arm. You love standing and spinning in your airplane saucer!



A few days ago you were scooting on your back. You would lift up your hips, kick your legs, plant your feet and then PUSH. That would scoot you backwards. You ran your head into a piece of furniture before your mommy could get to you though and that made you mad so you haven't tried that whole thing again. (-:

This month Overland Park Regional (the hospital you spent 88 days in after you were born) had a NICU reunion. Your mommy and daddy were excited to go and see everybody, show you off and hear how your friends that were with you in the NICU are doing. It was a fun afternoon.



You had a very special visit this month from mommy's cousin Jennette, her husband Jason and their daughter Maddy! You and Maddy both have sisters (Gabby and Gracie) in heaven. This was the first time you two met. You were born almost 2 months before Maddy, but your developmental age is almost 2 months younger than her. So lets just say you guys are close in age! (-:





You met your daddy's Aunt Elaine yesterday for the first time. She lives out of town and follows your blog. Her son's child, your cousin- was born last year at 30 weeks gestation so they know what it's like to have a preemie. She was thrilled to see you.

You have 104 followers on your blog! (6 more than last time).
Your Faithfulness Video Montage has been viewed 4,605 times!

That's 545 views this month!

Your "Jimmie's Wonderful World" montage has been viewed 584 times.
That's 58 times this month.

Your blog has been viewed 8,349 times this month for a total of 48,232 hits! You have a lot of very cool people who love to check on your progress Jimmie.

Jimmie you are so bright eyed and aware of everything going on around you.



When anyone meets you for the first time that's what they always exclaim about. You love it when your cousins Cole and McKenna talk to you. I love looking over at you to see you have been watching me. As our eyes meet your face melts into the most beautiful smile I have ever seen! You sure know how to make your Auntie's heart do flip flops. I love kissing your cheeks- even the one with the tube and the tape.



I can never take even one day of your life for granted because of the miracle I wittnessed in you fighting to have life. I will never forget on the night of your "crash and bleed" your Grandma Kathy and I were standing outside the NICU crying and praying for your life when a stranger, a woman came up to us and took our hands and prayed with us. She said her brother (Eric) was here (at this hospital) dying. She said he was the most amazing man she had ever known and that she was there to be by his side. She couldn't help but over hear about our little Jimmie and she said she knew he was going to live because her brother was going to Heaven that night and he would intercede for Jimmie. She then cried and prayed the sweetest prayer holding our hands.

I will never forget the care and compassion she had for us- she, who knew her brother was not going to make it. I wish I knew her name so I could contact her and tell her thank you and tell her about the miracle that you are!

You have fought and persevered through so much already in your young life and I know you will triumph over your feeding issues too. You are such an inspiration to me Jimmie, your joyful, quiet and peaceful spirit lifts me up every time I'm with you. I am so blessed to be your Auntie and that I'll be able to watch you grow into the amazing person I know you will be. You have changed my heart and my life and I will be forever grateful.

I'll love you forever Jimmie!
Auntie Amber

8 comments:

  1. Very powerful. Thank you little Jimmie for your strength and fearlessness. You inspire us.

    ReplyDelete
  2. almost 12 pounds! you are getting to be a big boy! amber, that was beautiful as usual! love you guys so much.

    ReplyDelete
  3. Adorable!! I wish I would have thought of something for scale in the pictures of my babies... I love the puppy! :)

    Still praying for Jimmie's eating and drinking.

    Kara

    ReplyDelete
  4. Ohhhhhhhh, tears are coming down my face! Beautiful post! Happy 8th Birthday Jimmie!!! May this upcoming month be a victory over the feeding issue!

    As always - lots of love and prayers...

    misha

    ReplyDelete
  5. Precious! :)
    Blessings for Jimmie always!

    ReplyDelete
  6. Happy 8th month birthday, Jimmie, you are so cute and inspirational! Your parents are amazing as well. I love seeing all your updates and praying for you and your fantastic family! Love and prayers!

    ReplyDelete
  7. Thank you Jesus! We praise you and we glorify you through the precious life of Jimmie. Continued blessings for this amazing circle of family and friends!

    ReplyDelete
  8. What can I say! I am so proud of Rachael and her Hester stubborness! Getting Jimmie off the reflux medicine. Amber you and Rachael are like daughters I am so proud of everything you both have accomplished!
    You both make your Aunt Suzy and Uncle Lin very very proud!
    Love, Aunt Suzy & Uncle Lin

    ReplyDelete