Saturday, November 28, 2009

My First Thanksgiving- by Jimmie Gravitt

Thursday I celebrated my first Thanksgiving. Mommy, Daddy and my Grandma Kathy loaded me up and we took a 2 hour drive to Columbia, MO where my great Uncle Brian and Aunt Lisa hosted a Thanksgiving feast! Uncle Brian is my Pa- mommy's dad- (Jay's) youngest brother. Did you get that? Well- whatever all you really need to know was it was so much fun! There was so much to look at that I was never bored and refused to sleep.

I was so glad Grandma Kathy came with us. Grandpa Rod had to work which was a bummer, but the fire engines still have to be ready even on thanksgiving.

Boy does it take them a while to pack and load up me up. Mom says it's crazy everything she has to bring when she takes me places. I don't know what all the fuss is about . . . ? It's just diapers, wipes, milk, enzymes, probiotics, baby food, bibs, blankets, high chair, airplane saucer, special feeding brush, feeding pump, feeding bags, extra batteries, blanket, baby monitor, change of clothes, suction bulb, toys, breast pump for mommy, sanitizer wipes, hand sanitizer for adults, hand sanitizer for me . . . Oh and the camera- must NOT forget the camera cause Auntie Amber wouldn't know what to do with herself if she wasn't always pointing and clicking that thing at me while being crazy and making silly noises and faces.

There were about 30 people there and most of them dear family members that have NEVER MET ME IN PERSON! Can you believe that??? I'm 9 months old and I have been hiding my cool mysterious self this whole time! Well not really, I let my auntie write and post pictures all about me on this blog.

It was fun to come of out of hiding and dazzle everyone with my little awesome self! Mommy has rules, if you touch me- you better use sanitizer. No one, but my grandparents can hold me. If you've been sick or around someone sick stay waaaaay back and out of my face. I think everyone is so funny when they gather round and just stand and look at me. I look right back. I stare them down actually with my piercing blue eyes!

There were lots of questions for my mommy. . . I told mom to bring along my first ever onsie and my little rottweiler puppy so everyone could see how much I have grown. Everyone agrees I am a miracle that we are SO thankful for.

I'm just thankful my Grandma Kathy suggested I get to chew on a turkey leg.

My daddy got one on his first Thanksgiving. Yes people- that cute little kid below IS MY DAD!

Too bad I have the tube in my nose giving me away! Otherwise I'd have you all guessing which is me and which is dad. (-:

I'm thankful for food.

(What?? I am!!)

I'm thankful for my fun daddy.

I'm thankful for nakey time and toys!

I'm thankful for my beautiful mommy.

I'm thankful that (my cousins) Cole, McKenna and I got to hang together on this thanksgiving holiday!

I'm thankful for Ma...

and Pa!

and my crazy Auntie Amber . . .

I'm thankful for Grandma Kathy...

and Grandpa Rod!

I'm thankful for 2 parents who love each other.

I'm thankful for smiles . . .

for tears . . .

for ups and downs . . .

Mommy says I was given a 50% chance that I would live when I was born . . .

And a 95% chance that if I did live I would have some major disabilities . . .

I'm not really sure I know what that means, I just know I'm loved!

Auntie says that's all I *need* to know. That I am loved. Perhaps someday I'll comprehend the miracle that is *me*!

I'm thankful for ALL of my family, friends and strangers who are now friends. I am thankful for every prayer that has been lifted up on my behalf!

I thank our Holy Father . . .

I'm thankful for my life, for it is beautiful . . .

Love and cute kisses, (yes I am now giving out kisses)
Jimmie Jim Jim

Tuesday, November 24, 2009

Perspective And Jimmie's "Will"

Things are the same with Jimmie. He still does well (adjusted age appropriate) eating solids, he still refuses to take anything substantial by mouth. Since Dr. H. set the appointment to discuss the g-tube with the surgeon (Dec. 15th) Rachael, Justin and those of us close have been processing...

Rachael has been struggling with disappointment. It's hard for her to see how well Jimmie is doing in all other areas and not expect better of him.

We cannot forget what this little guy has been through though. Yes- he has been phenomenal for a 24 weeker, but the fact remains he was born in to this world too early to eat, too early to breathe, too early to even open his eyes. What we have realized over this time as Rachael with the help of Dr. H. has tried to tube wean Jimmie- is that this is behavioral. And in that sense it shows how truly smart, aware and cognitive Jimmie is. His neurological development is so amazing. Not only has he associated drinking with pain and fear, he also knows it's hard work and that it is something he can refuse. You cannot force anyone to drink. In a world where he has been forced to do so many things before he was ready, before he should have even had to have an inkling of outside the womb- he was fighting to LIVE; in Jimmie's world this is one thing he *can* control.

This is a world where Jimmie has been faced with life or death challenges that he could not control. As soon as he was born he had tubes being shoved down his throat and needles stuck in him numerous times a day. Jimmie came out of this fight with "a will". Jimmie had SUCH a "will", such a fighting spirit that it must have contributed to his success. He blew away the accepted expectations and statistics that are pronounced over the head of every 24 weeker. It is now this "will", Jimmie's "will" that is exerting control in one area that he can. He does not HAVE to suck and swallow, he can, but he does not *want* too. He is too young to reason with. We cannot say, "Jimmie if you do not drink your milk you will slowly waste away..." and have him understand obviously . . .

He has no true oral aversions, he has perfect even amazing tongue coordination and movement. He swallows beautifully, he can suck . . . but none of that matters. Though his body is not weakened or really struggling there are also psychological effects from what Jimmie has endured in his 9 months. But even as the effects are becoming clear it is just a sign of his amazing strength and his *will*. This is not a BAD thing. This is the stuff that kings are made of. This too shall pass. Jimmie will eat and drink enough by mouth someday to live on. And this "will" he has- will serve him well! He will be a great man.

If the g-tube allows the struggle to fade away, his nose and throat to be free of this tube that has hurt and traumatized him then the g-tube is a *good* thing.

Rachael has done absolutely everything humanly possible to make sure they were not resorting to a g-tube when they shouldn't. Her diet, the naturopath, study on tube weaning, OT's -too many to keep track, TKM, enzymes, probiotics, the search for a supportive Doctor, Dr H. (he's AMAZING). She has had patience, she has persevered, she is incredibly stubborn, she is an unbelievably AMAZING mother. I am in awe at how hard she works for her son. She has the strongest "will" I have ever seen . . . well . . . wait . . . and now we see why Jimmie is the way he is.

Mom got some perspective this weekend. She has recently started treating a new client with TKM. She is a dear woman, who as it turns out used to be a NICU nurse at Children's. They had a time of sharing during a session yesterday and it was during that time mom discovered she used to work in the NICU. So mom began speaking of Jimmie. She told his entire story, she told of Rachael's struggle of late with his drinking, she told of finding Dr. H. (This woman knew Dr. H. and RAVED about him.). Mom's client was amazed, in disbelief. She said, "you are saying he has never had a surgery? He had no ROP? He had no NEC? He had low oxygen needs? He didn't have a PDA? He had no PVL? He had no brain bleed? He has never had an infection in his lungs?" She was just shaking her head in disbelief. Then she said, "this (g-tube) may seem bad or like a failure, but this is incredible! And even the circumstances for the g-tube are great!" She said, "I am not trying to minimize your pain, but Jimmie is extraordinary, compared to what I saw every single day- this is NOTHING! This g-tube will be a step forward for Jimmie! It will help with his behaviour . . .It will help his psyche."

This was exactly what mom needed to hear right now and of course she shared it with Rachael in the hope that it will help her have peace. We are sad he has to have a surgery for this, another hospital stay . . . that is disapointing. Rachael needs to grieve this, but pray that she can pass from grief to relief. Pray she'll have peace. Pray that Jimmie will handle the surgery and recovery well. Pray that once the NG is not torturing him anymore and that the pressure is gone that he'll change his mind about drinking. Pray for no reflux and that his gastrointeritis would heal. Pray that Jimmie stays healthy.

We'll know more details about the g-tube after Dec. 15th.

Thank you for fighting for Jimmie! He is the coolest kid! (-:

Speaking of perspective . . Rach sent this picture of Jimmie's preemie onsie next to the one he wears now.


Saturday, November 21, 2009

Bumming Hard

Rachael seems to be "bumming" pretty hard today. Pray for her.

Dr. H. saw them yesterday and like everybody else, he continues to rave about how good Jimmie looks *except* for his ability to take in liquids. Dr. H. made an appointment with the surgeon for a g-tube consult on Dec. 15th. That coupled with the fact that Jimmie is suddenly puking badly again has Rachael really down.

We have so much to be thankful for with Jimmie and she knows that. Sometimes you just have to grieve though.

Exhibit Strong Man! Jimmie you are so awesome!

Thank you so much for your prayers and support.


Thursday, November 19, 2009

Messy Eatin

Jimmie had another appointment with his new OT today. We'll call her Ms. C. She's the one who thinks he'll need a tube for a long while yet. Today she gave them a special baby tooth brush that vibrates at a certain frequency. Jimmie is doing really well with it. She is also recommending that they make a BIG MESS when Jimmie eats. She literally had them rub baby food all over his face and hands and let him splash and play in his food. This is supposed to be very good developmentally for your kid when they are learning how to eat. Rachael has asked my mom to design and sew some sort of "over frock" for Jimmie so that laundry doesn't get out of control with all of the messy eating. (-:

Ms. C. continues to think Jimmie is doing really well, but that it could be a couple of years before he'll take in enough without a tube. Again she is not really pushing them towards g-tube, but re-stated that if this was her daughter's kid (her grandson) she would push it. She just really thinks getting that tube out of Jimmie's nose and throat will help him on his way to the land of eating by mouth. (-: She does insist that it is a very personal decision.

Rachael is very hesitant to put Jimmie in a hospital for an elective surgery during RSV/Flu season. Ms. C. thinks it would be fine to wait until spring to schedule Jimmie's g-tube surgery if that's what Rachael feels better about. We'll see, no decisions have really been made regarding this yet.

The last few days Jimmie has been puking more again. Rachael is not sure why, but the only thing new she has eaten is a super healthy granola she made. She'll stop eating it and see if the puking stops.

Continue to pray for Rachael while she's on this diet- especially as the holidays come up. It's fairly depressing to miss out on all of that good "eatin".

Thank you for your continued support and prayers for our sweet Jimmie Jim Jim.


Tuesday, November 17, 2009

Prematurity Awareness Day

I just realized today is Prematurity Awareness Day.

Take a moment and read this post. Kara- mother of miracle triplet boys is so awesome! Her blog is linked over on the right. (McTriplets!)

Not everyone has the exact same journey- (obviously) we have been very fortunate (mostly) with Jimmie, but her post captures the essence of life after the NICU.

Thank you for your prayers!


Monday, November 16, 2009

Talk Of Home And An Insurance Scare

It's been a few days since I last updated, sorry about that. Life is full right now.

Jimmie is doing good. He has a snotty nose still from that last virus he caught, but he is again handling sickness amazingly well. They scared us to death when they released him from the NICU telling us that most micro-preemies end up back in the hospital because of any little sickness hitting them really hard! We are thrilled at how he has responded to being sick.

Rachael and Justin will remain "crazy" protective for the next 2 years or so about his exposure, but so far . . . so good!

Jimmie is on his 3rd day of the new weaning program. For the last 3 days they have not supplemented what Jimmie has taken by mouth for 2 feeds in a row, except for a little bit of water in his tube. He has been hungry, but not hysterically. The report is he has continued to take his solids fairly well, but drinking still not much to speak of. Starting tomorrow they will do the 4 days off. They will supplement every feed in his tube. Then they will do the 3 days on again. Rachael is really not expecting this to keep Jimmie from the g-tube, but she's going to give it a chance for 3 cycles or so.

Since this weaning plan is more laid back Rachael and Justin are starting to talk about moving back home. They have a beautiful home they built in Odessa, MO. Odessa is about 45 minutes from the Kansas City area. There are a few things they need to get in order at home including a fence for their dog-Mack. They are hoping to be home before Christmas. There are some things that are being considered. If Jimmie does have a g-tube surgery they might need to hang closer in town for a few days. Also Rachael (and I) are in our dear friend's wedding in Vancouver, Canada Dec. 12th. Rachael cannot take Jimmie on a airplane. Because of his preemie lungs and because of cold and flu season. So she'll be making a really fast trip. Leaving Friday and coming back Sunday. During that time Justin will definitely want to be at his parents house so he has help being Mr. Mom. So there is a lot that could inform their decision of when to move back home. Pray for them that they can have peace and direction about when the time is right.

They are so grateful they have had Rod and Kathy's beautiful basement to stay in all of this time. It has allowed them to have access to doctor's offices and lot's of help from family and friends. But as you can imagine they miss home.

We had an insurance scare today. Rachael and Justin's insurance co. has been pretty good so far. They have rejected claims. Rach and Justin have been responsible for a $100 here and a $100 there . . . but today they told Rachael they were refusing to pay Dr. H! Some "freaking out" ensued until it was all sorted out a few hours later. It was a mistake. Whew . . . that would have been upwards of 1000 maybe 2000. Thank God that was not the case.

Thank you so much for continuing to lift Jimmie, Rachael and Justin up in your prayers. They do need them.


Friday, November 13, 2009

G-Tube Knocking

Jimmie did end up getting to see that new OT that Dr. H has so highly recommended. Rachael thought she was wonderful. She was highly encouraging about how Jimmie was doing in many ways. However, sadly- she thinks Jimmie is 2 years away from eating enough to get rid of the tube. She observed Jimmie eating and she thinks he may still be refluxing. She thinks he has no oral aversions, great tongue movement and swallow, but based on her experience she thinks it'll be a while. That was sad and hard to hear.

She was super impressed with what Rachael has been doing with Jimmie. When Rachael explained how they had tried to tube wean, the naturopath, her diet, Jimmie's enzymes and probiotics (I'm not sure if she mentioned the TKM energy work, but mom applies sequences on Jimmie a few times a week) . . . This OT was like- "WOW! You guys are awesome and you are doing everything possible for your son!"

She said the g-tube versus the NG is a personal decision, but if it was her kid she'd go g-tube. The g-tube would access Jimmie's stomach from his abdomen and not go through his nose and throat. She did not push for the g-tube at all, but she mentioned sometimes kids do pick up their intake when the NG is gone.

So . . . Justin is just plain ready to schedule a g-tube surgery. He thinks it's coming to that and that it will make their lives (including Jimmie's) easier and more comfortable.

Rachael wants to give the new less aggressive weaning plan that new nutritionist gave them a try. Justin, the new OT and Dr. H are all supporting Rachael in her desire to give this new plan a try. It's 3 days on (skipping 2 feeds in a row and putting water in his tube to help with overwhelming hunger) and then 3 days off (Jimmie receiving full feeds at all of his feedings). I'm not sure how long Rachael is going to try this, but this definitely feels like the last ditch effort before scheduling a g-tube surgery. The g-tube is definitely knocking on Jimmie's door.

We know this is not the end of the world by any means and will probably end up being a good thing and a relief . . .

But . . . .

I feel sad. I'm not sure how Rachael is feeling, probably the same.

Rachael has tried this new fortifier they got from "Nature's Pantry" and every day that she's used this Jimmie has puked-badly! She's tried it a few times skipping a day in between and it is almost certainly *not* coincidental. So Dr. H. has agreed they will just trust Rachael's straight breast milk to do the job.

Jimmie is still trying to get over the new virus he got. His stools are runny, he ran a low grade fever for a couple days on and off and he has snot again. I was there this morning and though he had moments of typical Jimmie craziness and energy- over all he was more subdued than usual. All in all though he has totally handled these 2 viruses AMAZINGLY! Thank God!

Pray that against all odds and all predictions that Jimmie will respond amazingly to this less aggressive approach and avoid a g-tube.

Thank you for your prayers and support!

I'll leave you with some pictures. Thursday my parents had some concrete work done and they had their grandkids (Jimmie, Cole and McKenna) mark it. So cute . . . (-: