Dear Jimmie- Happy 9 Month Birthday

Dear Jimmie,

Happy 9 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.

This is you at 6 months.


This is you at 7 months.


This is you at 8 months.


This you today!



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



















Your mommy got ya while you were sleeping this time. I just want to kiss that little toe sticking out of your sleeper so much! (-:


Look how you've grown in your father's hands!


















This month:

You have gained 15 ounces. You are 12lbs 3oz!

You have gained 1 and 1/2 inches in length! You are 26 inches long!

Your head circumference has increased by 1/4th of an inch. It is 16 and 1/4 inches around.

Your mommy took this beautiful picture of you Jimmie the day you met Dr. H. He is a Developmental Pediatrician who has given us hope, resources and direction in weaning you from your NG tube.



You have endured two aggressive attempts at weaning this month. Your tube was taken out early in the morning 2 days in a row. You went all day only eating by mouth. You do really well most of the time taking solids, but drinking is a HUGE challenge for you. You have improved your sucking reflex and you have upped your intake, but unfortunately not enough to get rid of that darn tube )-: The most you have ever drank in one day is 225mls which is about 25% of what you need to do.

Here you are without your NG tube:


It's fun to see your beautiful face without the tube.

You have been brave and have tried hard, but it has been very stressful and frustrating for you. So much so that you got sick for the first time ever, right after the first attempt. You handled that nasty cold amazingly. You got sick again yesterday after a second 2 day weaning attempt. So far you are doing well handling this virus too.

We have a new plan to work on weaning in a less aggressive way that will hopefully suit you better. A "new" nutritionist is on board recommended by Dr H. Also a new OT that hopefully you will see next week.

Your mommy is on a VERY restricted diet right now to help with your food allergies and a probable over growth of yeast. She is amazing, your momma!

Physically you are doing great, above and beyond your developmental age of a little over 5 months. You are now sitting unsupported! You are also scooting on your stomach in a really funny way on your head like an inch worm.

You have 106 followers on your blog! (2 more than last time).

Your Faithfulness Video Montage has been viewed 5,397 times. That's 792 views this month!

Your "Jimmie's Wonderful World" montage has been viewed 651 times. That's 67 times this month.

Your blog has been viewed 9,701 times this month for a total of 57,933 hits! You have a lot of very cool people who love to check on your progress Jimmie.

You went on a hayride with your church this month Jimmie. You enjoyed the tractor and being out in the fresh air with your mommy and daddy.



You wrote your first post this month Jimmie. (I stole that idea from Jonah's totally cool mommy- "imitation is the sincerest form of flattery" (-: ) It was totally cute and a big hit. Mostly because you were dressed up as "Jimmie Jim Jim The Rootin Tootin Cowboy and you were beyond adorable!



Halloween night you visited your daddy


And your Grandpa Rod


at their fire stations for the first time. That was very fun and special for them to show you off to all of the guys!

I'm sure you think there is nobody cooler than your daddy!



We observed Pregnancy and Infant Loss Remembrance Day this month Jimmie. I burned these candles for your cousin Gabby and your sister Gracie. As I lit those candles that evening I thanked God I wasn't lighting one for you.



Jimmie, you are such a bright light in our lives. Every time I get to see you in person I thank God for His miracles that have brought you to this point. Your eyes just sparkle Jimmie. Your personality is so curious, sweet and feisty. I am sorry that your struggles with eating have continued, but I pray these hurdles will just make you stronger and more confident as you overcome them. You have overcome so much in the 9 months since your birth, all the while touching people's lives and hearts.

A couple of dear friends got to spend a few minutes with you in person this month and they both had tears in their eyes as they looked into your beautiful face. One of these friends buried her amazing father the very same day you came home from the hospital. Your mommy delayed your discharge to go to the funeral. Though our friend was mourning her father she had tears of joy that day when she found out you were coming home! The miraculous ways you have overcome your misfortune were at the forefront of her mind as she looked at you. It was a powerful moment. Your life, Jimmie- is a testimony to God's power, goodness and love.

"But I will sing of thy might;
I will sing aloud of thy steadfast love
in the morning.
For thou hast been to me a fortress
and a refuge in the day of my distress.
O my Strength, I will sing praises to thee,
for thou, O God, art my fortress,
the God who shows me steadfast
love."

Ps. 59:16,17

All you have to do Jimmie is just "be" and your "being" sings of God's love. Unfortunately 9 months ago today we were all in great distress. We were distressed because of the danger you were in as you were forced out of your mommy's tummy so tragically early. God was then, and is now our refuge Jimmie. God continues to show us His steadfast love. For that I am singing...

I will love you forever my little Jimmie Jim Jim!
Your Auntie Amber

Struggling

I've spoken with Rachael 3 times today.

Phone call #1- We discussed how frustrated and discouraged she is with Jimmie's eating by mouth. Yesterday was a very hard day. Jimmie absolutely refused to even look at his bottle or his sippy cup. He became hysterical by mid-day and continued on into evening extremely hungry and frustrated.

Dr. H. said this morning to give him a break. Rachael told Dr. H. her feelings, which are many . . .

She's feeling like Jimmie can do this, but won't. She mentioned that so far their best day has yielded only 25% of what Jimmie needs to take in. Putting the tube in and out is very hard on everybody, but especially Jimmie. My mom and Kathy cannot even stand to be in the room and choose not to if possible. It's painful. Dr. H. encouraged Rachael to wait and see what this new OT he referred them to will say on Thursday, but Rach has spoke with her at length on the phone and Rachael said that *she said*-if a kid will not take in what he needs to grow on, a g-tube is needed. Dr. H mentioned he could schedule a g-tube surgery if Rachael wanted him to, but he encouraged a little more patience that he did not feel like we are quite "there" yet.

I told Rachael I felt there were many reasons why she might choose to get a g-tube among them being taking the psychological and physical pressure off of Jimmie, Rachael and Justin. But Rachael insists she does not feel a peace about that yet. She just does not want to go that route, yet doing what they've been doing seems tortuous to her. So basically Rachael is not happy with any choices right now. She often expresses how many kids she knows of (in an online community for tube weaning) that wean and have had and have many more physical problems than Jimmie has ever had.

So- the end of that phone conversation was me saying you have to choose a path and relax into it. And Rachael still in a hard place emotionally.

Phone call #2 - A nutritionist that both Dr. H. and this new OT (they will see on Thurs) recommended- came to the house to meet Jimmie and speak with Rachael and Justin. She came in and really was exactly what they needed this morning. Her point of view is that some kids do wean the way Dr. H. has been attempting to do it. Once the tube is out they quickly pick up their volume and it is clear it's going to work. Other kids (Jimmie apparently) do not pick their volume up enough, become very stressed and the more hungry they are the less likely they will eat.

So she recommended that Rachael skip two feedings in a row in a day and work with him during that time giving him whatever solids he will take and of course offering him drinks. Then she wants Rachael to give Jimmie some water in his tube. The hope is that this will encourage just enough hunger, but not too much to where he becomes hysterical and shuts down. She wants to do this slowly- 1 day on 2 days off I think is the plan. (comment and correct me if I'm wrong Rach).

Rachael was decidedly "up" and feeling a bit better. That was exactly what she needed this morning. A refreshing hope filled perspective with a new plan. That is exactly what this nutritionist offered. Thank you Lord.

The only thing about this plan is that it assumes/hopes that Jimmie will do well *with the tube still in*. We are quite sure that causes some kids to not want to swallow. Jimmie has had some success in the last week drinking with the tube in so hopefully that won't stand in his way.

Taking the tube "in and out" certainly hasn't been a great scenario.

Rachael did mention however that Jimmie had thrown up on her this morning and she wasn't sure what was going on, but something wasn't quite right.

Which leads me to:

Phone call #3- Rachael took Jimmie's temperature around noon and it was around 100.6. So Jimmie has a fever and has thrown up this morning. He has been drooling a lot so it's possible it's teething, but we kind of doubt it. Rachael and Justin will watch him closely and my mom will no doubt go over and apply TKM as she does weekly for Jimmie.

If he is sick that is another indication that his little body is just not handling the aggressive weaning tactic of pulling the tube for 12 hours. This will be the second time they pulled the tube for 2 days in a row and both times he has gotten ill.

SO- pray . . . it's all overwhelming. Rachael and Justin and their outlook and stamina, Jimmie and his little mind and body and for direction and peace...

I'll update again later if Jimmie gets worse, please pray he doesn't!

Love,
Amber

Tomorrow Is A New Day

Rachael ended up pulling the tube yesterday and Jimmie did the best yet. He took 220 mls for the day before they put the tube back in!!! However as "up" as we were feeling last night we are pretty "down" tonight.

They pulled the tube again today and Jimmie has had a really rough day. He has been a very unhappy little boy, has not even taken 1/2 of what he did yesterday and has really struggled with it.

Jimmie has been crying for the last few hours and is just miserably hungry, yet refusing to take his bottle or anything else Rach has tried.

Weeping may endure for the night, but joy will come in the morning.

Tomorrow is a new day . . Lord please help Jimmie to do this.

Thank you for your prayers!

Love,
Amber

P.S. I am rejoicing for Mckmama and her precious Stellan! Thank you Lord!

Amazing

Unfortunately that "amazing" does not refer to Jimmie's drinking. He has fallen off the last couple of days and is not interested again in the bottle. Rachael is thinking they will probably have to get aggressive again and pull the tube.

I have mentioned a few times the strict diet Rachael is on. A couple of months ago when she first saw the Naturopath they decided that Rachael should stay away from soy, wheat, gluten, corn, cheese and milk. These foods can easily cause allergies and Rachael has a history with some of them herself. The thinking is that since Jimmie is still being fed her breast milk that perhaps he has some food allergies that are causing or at least exacerbating some of his issues with feeding.

Rachael has noticed a big difference with Jimmie and even with herself. The biggest thing for Jimmie has been a significant reduction in his puking. His reflux is all but non existent now. He was even off of all drugs. Although Dr. H. has put him back on zantac while they wean, just to make sure Jimmie's gastritis doesn't act up.

Jimmie has also been receiving regular probiotics and enzymes.

Rachael visited the Naturopath again last week because the results from some blood work were finally in. Rachael's blood work showed abnormal levels of yeast. The yeast levels were just into the "too high" range. There are many symptoms that an over growth of yeast can cause including emotional disturbances.

There is a high probability that Jimmie's yeast is too high as well. Both Jimmie and Rachael received a staggering amount of antibiotics while they were in the hospital.

So the Naturopath recommended that Rachael also go on the Candida Diet. This consists of staying away from all sugars, yeast and vinegar among other things. The end result is that with this diet along with the diet Rachael was already on- eating is a huge challenge right now.

It's pretty depressing as both of these diets ideally should go until Feb. That is through Thanksgiving and Christmas folks.

I asked Rachael are you sure you want to add this Candida diet on? I mean is there proof that this diet will really help you and Jimmie enough for this sacrifice to be worth it?

Her response, "When I was first hospitalized losing Jimmie, I said I would do EVERYTHING in my power to help him be ok." "If there is a chance this could help Jimmie in some way I'm going to try to do it."

It has been really hard though. Eating is expensive and very very boring right now for Rachael. She has committed to 2 weeks of the Candida diet and then she will re-evaluate if she can handle this right now on top of everything else. Rachael has (understandably) lost quite a bit of weight in the last two months as it is and really shouldn't lose too much more.

Rachael's commitment and sacrifice for her son brings tears to my eyes. I remember that dark day in the hospital when the Doctor laid out Rachael and Justin's options. The choice between the cerclage and just letting things be and hoping no more dilation would happen was one of those choices that seemed like "damned if you do, damned if you don't". The doctor said, "it could all pretty much be over with today if her water breaks while I'm trying to stitch her cervix shut. But the odds that if left alone she'll make it long enough for baby to live are VERY low." Rachael was only 20 weeks gestation.

I remember who all was in the room. Rachael laying in the hospital bed, Justin sitting in a chair next to her with his head in his hands. Mom, Dad, Kathy, Eric (my brother) and myself. After the Doctor left the room to give us privacy and time to make a decision there was complete silence. Except for the quiet tears. After a bit I remember saying, "this is an impossible decision." I just couldn't believe this decision had to be made. I remember dad saying, "whatever is decided you cannot look back. The choices are basically the same. Just pick one and don't look back."

I remember Justin suddenly speaking up and saying, "I think we should do the surgery." I remember my mom quietly saying, "I'm going to play devils advocate not because I disagree, but just so this thing is truly flushed out in our minds."

Then there was quiet discussion. Then Rachael finally spoke and said, "Ok, can you all leave Justin and I alone . . ."

We all went out in the hall. I was praying Lord please be here! I'm sure everyone else was praying too. Kathy tearfully called Rod who was at home sick.

As dad and I were standing in the hall in silence a social worker came up and said, "so how are you guys doing?" We kind of just looked at her. I couldn't even get words out. I said something like, "I can't believe this is happening again, they lost their daughter last year." She said, "well how did you guys get through that?" I thought, "what do you mean? I don't think I'm through that." but I couldn't speak. Then my dad, rather shortly said, "what do you mean how did we get through that!? We don't have a choice- you just put one foot in front of the other!"

I think the poor girl got a clue that her timing was not great and she graciously gave us her card and walked away.

After that Justin called us back in the room and Rachael said, "We've decided, but first- we have named him. His name is "James Douglas" and we are going to call him "Jimmie" after Justin's grandpa." We all smiled through tears. Then she said, "if the worst happens and we lose Jimmie we know we can do this, we've done it before." Then, "we've decided to do the surgery." Rachael then explained, "I can't just sit here and do nothing. I have to do something. I will do anything in my power to help Jimmie be ok...."

Almost 9 months later Rachael has not lost sight of that moment. She made a promise, she is still fighting for her baby.

Amazing . . .



Thank you for fighting with her with your prayers and support!

Love,
Amber

Pushing Forward

The visit with Dr. H. went well yesterday. Jimmie has gained 2 ounces since last week. He still is not yet 13 lbs. Dr. H. isn't concerned. After looking at how active Jimmie is and all he is doing physically he feels that Jimmie just burns a lot of calories. Which is why Dr. H. would really like Rachael to fortify her breast milk again. Rachael brought in an alternative formula that she got a Nature's Pantry and showed it to Dr. H. He compared that with the enfamil he wanted to use and said, "yep- go for it, this should be fine!" Rachael was hugely relieved because when she had showed the same stuff to the clinic at Children's Mercy they would hardly look at it much less sign off on it.

Because she is still pumping breast milk for Jimmie, Rachael is working very hard to stay away from dairy, wheat, gluten, soy, sugar, yeast, corn... did I miss anything Rachael? She is so committed to doing everything possible to help Jimmie it blows my mind.

Jimmie is going to see the OT that Dr. H. highly recommends next week on Thursday. They will discuss whether or not to pull the tube again then. Dr. H. is encouraged by what Jimmie is doing even with the tube in his nose and down his throat. His thinking is that if Jimmie will continue to progress with taking more by mouth even with the tube in. That's just a easier and better scenario than taking the tube out and putting it back in over and over.

To keep pushing Jimmie forward Rachael decided to have Jimmie take every other feed by mouth today without supplementing that feed by the tube. So basically 1/2 the time today he was supplemented whatever he did not take by mouth and the other 1/2 of his feeding Rachael did not supplement. So if he only took 30mls- that was it. This is obviously less drastic then what they did last week before he got sick, but still leaves him hungry some of the time if he refuses to eat.

He did take about 130mls total by mouth today as of a few minutes ago. That's an improvement over a week ago, but tonight he was starving and hysterical and refused to take in much. Rachael's not sure what that was about. Maybe it was just a bad case of the evening grumps. Today has been the first day Rachael has not noticed anymore snot running from Jimmie's nose so we are hoping he is over his cold.

Keep praying feeding prayers for Jimmie. He has made good progress, but still has a ways to go.

Love,
Amber

P.S. Oops- Rachael told me Jimmie's weight wrong. He's actually gained about 12 oz! He weighs 12 lbs 5 oz. (Anyone really paying attention will have noticed I had completely different numbers under the P.S. last night. I guess I heard Rachael wrong on the phone. She just sent me an email. LOL! Hopefully we finally got this right!)

Tricks And Treats

Tricks Or Treats?? All of you awesome people get both here:

Jimmie's trick: This is a short video clip of Jimmie blowing raspberries Halloween night.


Jimmie hangs with Ma and Pa (Jay and Andrea- Rachael's parents) on Sunday mornings so Rod, Kathy, Rachael and Justin can attend church together. Rachael is being even more protective now that we are in the middle of RSV and Flu season.

Pa sounds like he sat on a whoopee cushion or something. Jimmie in true little boy fashion thinks it's funny. The treat? His dimple and his giggle!


Remember that video of Jimmie lifting his head and turning it when he was not even 2 lbs and not quite 1 month old? It was this post, "Small But Mighty" ! This little boy is SO STRONG. Speaking of tricks and treats, here's another trick Jimmie loves to perform.


A *special* treat:

Jimmie without the NG tube! Look at that beautiful face.




Last but DEFINITELY not least, a trick:

Jimmie has 3 times in the last 3 days sucked 40mls at one time, from a bottle!!! That is a very special trick Jimmie! This even while still recovering from a cold and with the NG! Go Jimmie go!

Jimmie has an appointment with Dr. H. tomorrow. They will discuss when to remove the NG and start weaning again in earnest.

Now you have all had your serving of tricks and treats for the day! (-:

I know I know, Halloween is over. I just got that memo.

Thank you for your prayers!

Love,
Amber

My First Halloween (by Jimmie Gravitt)

So, I went"Trick Or Treating" as a "Rootin Tootin Cowboy". I was a perfect little cowboy if I do say so myself.

From the top of my head . .


To my totally awesome shirt. Yup I'm rockin some pretty cool fringe folks!


Down to my bowed legs. (I've spent a lot of time in stirrups on a saddle people.)

To the tips of my little booted feet . . .


My cousin's met me at my Great Grandpa and Grandma Hester's house. Things were cool until that girl, McKenna decided she didn't like her pink bag and tried to take the cool pumpkin bucket my Grandma Kathy gave me. Don't worry I tied her down and wrestled it back!



The wizard's name is Cole. McKenna wanted to be a wizard just like her big brother.



I'm not sure girls can be wizards, but whatever. I liked lookin at the pink sparkles on her hat so it's all good.



I'm not sure what happened here. My hat is gone and I'm showin my bald head. Bald is beautiful- I always say. I know that because my mommy can't stop rubbing and kissing my head.


My mommy was trying to schedule a feeding in between all the stops I was makin and she made me wait a little bit for my feed. I was hungry and I decided to show my skills and take 30mls from a bottle.


I don't why everybody makes such a big deal out of all that. My mom says I'm makin her crazy. I just like watching her make all those funny noises while she tries to get me to eat. She is crazy, crazy WONDERFUL!


My Great Grandpa Hester could have been a cowboy. He's a born and bred Texan. He's bald and beautiful just like me.



We also went to my Great Grandpa and Grandma EuDaly's. I blew a lot of raspberries while I was there. My Auntie Amber always makes a fool of herself goin on and ON bout how cute I am. Sheesh, I know I'm cute, but your kinda over the top Auntie.

The coolest part of the night was seeing my daddy and my Grandpa Rod at their Fire Stations...

I was a bit tuckered out cause I was ropin some cattle earlier, but don't worry. I just needed a short siesta.


Yup, y'all are not going to believe this, but . . .


My dad is the coolest! He's a Fireman!


This was my very first time to visit the station, meet his buddies and drive the truck!


I almost honked the horn to scare everybody, but I decided Nah, it would scare my mom too much.


My night as a cowboy ended trick or treating my Grandpa Rod. He sure was happy to see the likes of little ole me!


All in all it was good being me last night. I'm Jimmie Jim Jim the Rootin Tootin Cowboy and don't you forget it! (-: