Wednesday, September 30, 2009

A Long Haul?

Jimmie is being pretty inconsistent with eating from a spoon and drinking from a cup. At times he fusses and refuses it altogether. Other times he'll eat and drink a little. Rachael is starting to come to the conclusion that they might be in this for the long haul. Like years... She is really starting to feel that now Jimmie has aversions to eating. When a child has aversions it can sometimes take a few years and a lot of hard work to get them over it. There is no way to know for sure that this is the path Jimmie is taking. Rachael would love it if he surprised her and suddenly began to be consistent and interested.

However it's going to actually help Rachael to be patient and get on with life, so to speak, if she expects this thing to be a long process.

Rachael is also researching a leading clinic for tube weaning that's based in Europe. Graz, Austria actually. They do have an email coaching program that Rachael is very interested in for Jimmie. She really wants the support of Jimmie's current Doctors though before she tries this. And also to find out if Jimmie is a candidate.

I'd like you all to pray that she'll get Dr. S's support for this and that if it is the way she should go with Jimmie that it will all be made very clear to her and Justin.

If the way is cleared for them to go the route of the Graz Clinic I will start giving more details about this. For now though just pray for Jimmie to eat. Pray that his mind would change and be receptive to eating by mouth.

Thank you for your comments, support and prayers.

We haven't had new Jimmie pictures for a while. Are you all in need of a Jimmie cuteness fix?? I certainly am!! I'm going to see him on Friday and I'll be sure to get some pictures and maybe video!

Love,
Amber
P.S. Family and friends and anyone else following McKenna's (my daughter) journey, I have updated her blog.

Monday, September 28, 2009

Children's OT

So Rachael took Jimmie to an Occupational Therapist at Children's Mercy today. The OT thought Jimmie was doing a good job eating rice cereal from a spoon. She said he had good tongue movement and coordination. She does however, feel that he has an aversion to the nipple.

She thinks when he went off the oxygen it was harder for him to breathe while he ate which was scary for him. Jimmie does seem sensitive to that. Rachael can hardly put a shirt over his head because he freaks out. It must have been traumatizing to be born when he was and not be able to breathe.

So eating became a struggle and he developed reflux which hurt and also caused him to have big scary pukes during which his heart would slow briefly and he would micro-aspirate. After which he sometimes had some small retractions in his chest. That signifies a struggle to breathe.

Now he associates all of that with the nipple. So the OT is recommending going to the sippy cup for good. She also is having them thicken his liquid and wants Rachael to introduce some strong flavors to kind of shock him into enjoying drinking as something different.

Rachael will be doing these things. The OT also thinks Jimmie's neck and head control and his back is developmentally more like a 6 month old and that Rachael should feed him sitting in a high chair. Rachael will have to figure out how to prop him up a bit because he's still so small. He is 11 1/2 pounds.

Unfortunately the OT does think it will be a while before Jimmie will be taking all of his nutrition by mouth. She doesn't see the tube going away for a few more months. )-: However she was encouraging about that eventuality.

This OT will be working with him twice a month.

Keep praying for our Jimmie Jim Jim. If he could just get over this hurdle things would be almost normal. Rachael and Justin want to get rid of that tube so badly. They are having a really hard time with this process. It just seems very slow and haphazard to them. Rachael doesn't feel like anyone is really offering a straightforward plan to actively wean him from the tube. Everyone at Children's seems to refer them around to specialist after specialist. Rachael is very grateful for their expertise, but she wants someone to actively help her wean him from the tube. The OT didn't want that responsibility. The nutritionist won't encourage it because she doesn't feel comfortable. The Neonatologist after Rachael pushed them gave that plan to take him off for 48 hours, but only if he'll take 80mls by mouth every 3 hours which is completely unrealistic. She and Justin are trying hard not to get discouraged. Pray for them too.

Happy 4 month (developmental) birthday little man.

Love,
Amber

Sunday, September 27, 2009

More Tomorrow

Jimmie has an appointment with an occupational therapist tomorrow at Children's Mercy. Rachael and Justin have *not* had much success feeding Jimmie by mouth. Especially with a nipple. I did watch him eat some rice cereal today and do pretty well, but he is not taking most of his nutrition by mouth.

I'll update more tomorrow after his appointment. Keep praying for this boy! There just isn't any outward reason anymore for him not to suck and swallow. Yet he won't.

Eat Jimmie eat! Go Jimmie go.

Love,
Amber

Thursday, September 24, 2009

Happy Birthday Rachael

First of all- Jimmie . . . They took his tube out after his 6:30am feed. He only ate 30 mils in 8 hours and slept most of the day. So they put his tube back in and will try again tomorrow.

While his tube was out he was hungry, but just would not eat. He would cry, struggle and then go to sleep. Rinse and repeat . . . We are disappointed, but not surprised. We really appreciate your continued prayers for Jimmie.

After his tube went back in and he had a good meal, he perked up and had fun hanging out with his Daddy and Mack.




And he rode the 4-wheeler! Well, not really, but don't tell him that.


And now- for Rachael:

Happy Birthday Rachael!

You are the best sister ever.

Even though you ruled the roost, chose the best spot for your bed in our room, had the front of the closet and 5 drawers while I had 4.

You also put yourself in between me and someone annoying. You put your arm around me when I couldn't sleep at night and were my constant companion and playmate.

I was only 14 months old when you were born and my earliest memories are of you. If I had known and understood, your birthday would have been one of the happiest days of my life. I'm sure I was happy- I've been told that I poked you in the eye. Which reminds me of another time I poked you in the eye when we were dancing together. Wait-- I think it was YOU who poked ME in the eye in that duet. Half the time I don't know who did what. Was it me or you? (-:

(Rachael)

(Amber and Rachael
)


I enjoyed sharing a room for 23 years, sharing a passion for dance and now sharing a business.

(Before a recital with our cousins.)


(Bowing after a show. This was 3 months after Gracie died. Those pink corsages we have on were for her.)


As life has evolved I now enjoy sharing in the joys and sorrows of being a wife and a mother.

Life is so beautiful- especially because you are in it.



I love you,
Am

Wednesday, September 23, 2009

Good Results

The results of Jimmie's endoscopy, the biopsies and the ph study were all good! As you know the endoscopy showed no physical abnormalities. We got the results yesterday from the biopsies and they also showed no abnormalities just a slight inflammation of the lining of his stomach. For this they recommend keeping him on the prevacid. We also heard yesterday about the ph study results and those were "minor reflux". Jimmie's reflux is getting better!!! What all of this means is that Jimmie is not a candidate for the fundo procedure and he'll only be a candidate for the g-tube if we can't get him to start eating by mouth.

So Rachael spoke with the Neo's today and they will start trying to take Jimmie off the NG tube. Starting tomorrow they are going to pull the tube for 48 hours. Jimmie is supposed to take 107 mls (at the very least 65 mls) every 3 hours. She's not supposed offer him any food until 3 hours has passed. She is to keep a detailed journal and call in with his weight on Monday.

Rachael will try their plan first. She has some doubts about it, but she'll give it a good go. She wants us to pray that Jimmie will shape up and eat by mouth! If Children's weaning process doesn't work- before she resorts to a g tube, she has one more resource she has researched. I'll talk more about that if she ends up going that route.

So our next big goal and prayer request for Jimmie is to get him eating by mouth. No more tube! No more tube! No more tube! (-:

The next few weeks may be hard and stressful for Justin and Rachael as they attempt to wean Jimmie from the tube. Please pray for them too.

As always- thank you so much for fighting for Jimmie.

Love,
Amber

Monday, September 21, 2009

Naturopathy

Rachael took Jimmie to a Naturopathic Doctor today. (Lets call her Dr. C. ) Mom found this Doctor and Rachael took the initiative to make an appointment. Rachael has let all of Jimmie's Doctors know that they were on there way to a Naturopath . . .

Dr. S - Jimmie's Pediatrician - is supportive. He wants to work together though, he doesn't want it to be a "them versus us" type situation. Rachael is in complete agreement. She doesn't want that either.

What she does want is to know that she has done absolutely everything in her power to help her son before they resort to surgery.

So with Dr. C and her expertise leading the way. They are going to test Rachael's blood for food allergies. She may end up on a pretty strict diet. She will go back to all fresh breast milk, but give Jimmie the hind milk only. She is going to take Omega 3 fatty acids and some other supplements. Jimmie is going to be put on enzymes and probiotics. Hopefully Dr. S will recommend Dr. C so that insurance will cover this. Pray that will be the case.

When Jimmie first developed reflux we were told the valve in his stomach is just weak because of his prematurity. But the more we thought about it the more that just didn't sit quite right. Our question, "Then why did he not have reflux all along?" He developed this a little before he was 4 months old- back in June. If it truly was just a bad/weak valve why did he do fine for a GOOD 3 months??!

This is why Dr. C is highly suspicious of food allergies. This is also why we are now going to try enzymes for Jimmie and all of these other things.

We are still anxiously waiting for the biopsy results from Jimmie's endoscopy.

Jimmie took some milk by mouth yesterday using a sippy cup. He was so excited about it and so were we. Then today he doesn't want anything to do with it. Little stinker. (-:

So there are possibly some big changes afoot in Jimmie's medical care. All as a last ditch effort before resorting to a fundo and a g tube. Pray it all works. Because right now we are just treating symptoms. Rachael is not ok with leaving him on this NG tube. We really want him to go back to eating by mouth. He is not in horrible pain anymore with his feeds as long as he's on breastmilk and prevacid. So he needs to get off that tube.

Thank you so much for your support and prayers!

Love,
Amber

Saturday, September 19, 2009

Gaining Weight And Follower #100

Jimmie is gaining weight!! Rachael has been doing everything I talked about to give Jimmie fatty milk. She's also been able to increase his intake to 105mls and he's taking it over 45 minutes instead of an hour!

Yesterday he was up to 11lbs 2ozs. Keep praying!

Hopefully on Monday we will get the results of the biopsies that were taken during the endoscopy. And also the results of the ph study. Rachael is expecting the biopsies to come back negative for anything and the ph study to be positive for reflux. But she's anxiously waiting to know for sure.

After the results are in Rachael will be anxious to come up with a plan of action to get rid of the NG and help Jimmie eat by mouth again. He is back on the Prevacid. He was very uncomfortable without it during the ph study. So now we know that is definitely helping. However he had a great appetite while he was off the Prevacid and now that he's back on- no hunger drive again.

Jimmie has not taken anything by nipple for quite a while now. Since before the endoscopy I think. He did however take some breast milk by spoon last night and enjoyed that. He'll be 4 months adjusted age at the end of this month and at the point Rachael may introduce some rice cereal . . .

Jimmie has some new tricks that Rach will hopefully get on video soon. If you put something against his feet he can push off and scoot across the floor. He pulls forward with his arms. He also tap dances! (-: And I still haven't heard his belly laugh!



I'm so happy that you Tracy were our 100th follower!! I believe you've brought me to tears in the past at least once with a very touching comment. This comment had no name, but was this you Tracy? It was under the "Happy 40 Weeks" post.

"The greatest heights of joy to Jimmie's wonderful family and friends! We will always pray for him. We will never forget his journey. I am a preemie mom who went on strict hospital bed rest at 24 weeks gestation and was able to hold on until 34 weeks. I left the hospital on day 68 and my little boy only spent 8 days in the NICU. The miracle of Jimmie's journey has been an important part of the healing process for our family. Everyone here wants to know how Jimmie is...he's touched so many lives. He reminds us to stay strong. He reminds us of the power of prayer. God is so good! Thank you for sharing his story...and thank you for the updates. We will continue to follow him...
God bless you."

Thank you Tracy for your support and prayers and many blessing to your children and family!


Thank you to everyone- for your prayers and support! We are so blessed by you all.

Love,
Amber

Friday, September 18, 2009

Jimmie and Maddy

Today was a special day. My cousin Jennette, her husband Jason and their daughter Maddy are in town for the first time since Maddy was born. Our first time to kiss Maddy's cheeks and see her beautiful blue eyes in person has been so amazing! It was also Jennette and Jason's first time to see Jimmie in person! Jennette helped me by writing blogs the week before Jimmie was born. My daughter McKenna was having a surgical procedure that week. Jennette also posted the night Jimmie was born and when he had his "crash and bleed" .

Jennette is also mommy to Gabriella . Rachael and Jennette are cousins and love each other, but unfortunately share a sad history. They both buried their firstborns. Gabby passed away in Jan. 2008, Gracie - April 2008. Rachael was newly pregnant with Gracie when we drove out to Colorado for Gabby's funeral. Little did she know a few months later she would also receive devastating news at her 20 week ultrasound. And that she too would be burying her daughter in a tiny white coffin.

Rachael and Jennette became pregnant for the second time pretty close together. Jennette's due date was the end of March. Rachael's- the end of May. Of course Jimmie was born Feb. 11th, almost 4 months too early and Maddy was born a little late on April 1st. So technically Jimmie is a couple months older than Maddy, but if you go by Jimmie's gestational age he is a couple months younger.

It's been well over a year now since Gabby's and Gracie's funerals, we are so thankful for the blessings of Maddy and Jimmie. Thankfully Jennette did not share in also having a tumultuous second pregnancy. Although she had a 2 vessel cord and a semi-emergency c-section, Maddy was born at term and very healthy!

And although the pregnancy with Jimmie was traumatic and tragic in some ways, it has resulted in a beautiful amazingly healthy brave little man. Rachael has been wearing a shirt lately that says, "Some girls are born lucky." (-:

We are blessed!











Thank you Lord for these beautiful babies!

I'll post an update on Jimmie tomorrow. He's doing well.

Love,
Amber

P.S. We have 99 followers now, surely someone out there wants to be number 100! (-:

Wednesday, September 16, 2009

Home Again

Jimmie is home! He's doing good. He has been very uncomfortable and fussy the last few days though. Poor little guy. He has been through so much.

We may know the results of the biopsies by Friday, but Rach thinks it's more likely Monday.

Rach spent 30 minutes telling me all of the details of her struggle to feed Jimmie something that he tolerates and that he'll grow on. He tolerates straight breast milk VERY well. The nutritionist thinks all breast milk is usually 20 calories, but Rach doesn't think hers is anymore. It's very thin and watery. So she spoke with a lactation consultant who confirmed that her milk may NOT be 20 calories. The LC said there are machines that can measure out the calories, but they don't have one here in KC (as far as she knows). She is going to look into sending Rachael's milk off to be tested. It would be nice to know for sure so Rachael and the nutritionist can calculate exactly what he needs. The volume and how often etc...

Rachael wants to try to come up with a way that Jimmie can grow on exclusively breast milk. The nutritionist is on board for this. Rachael is positive Jimmie does not tolerate Alimentum. She is willing to try fortifying with the Neocate. But Jimmie did not tolerate the Neocate when he was on only that for a few days so Rachael has her doubts.

The LC has given her some tips to increase the fat content in her milk, all of which Rachael is doing. First of all she's going to start using older milk that she pumped and stored. It is obviously more yellow in color and thicker. Rachael had been using fresh because of the antibodies and such, but she'll mix a little fresh in to keep supplying those. Rachael had spaced out her pumping sessions to every 6 hours. The LC wants her to increase them to every 5 and then maybe even 4. She's going to pump for a couple of minutes and set aside the "foremilk" and then keep the "hindmilk" which is higher in fat content. A mothers breast milk starts out very fatty when the baby is forst born and then over time slowly decreases with the babies needs. Well Jimmie is a special case. Rachael has been lactating for him for 7 months, but he's barely the size of his gestational age of 3 1/2 months. Rachael has cycles again and her milk is just more for an older bigger baby. She is really hoping by increasing her pumping again and doing the other things that the fat content will increase.

Rachael is so dedicated to doing the absolute best thing for Jimmie. I am constantly in awe of how hard she works for that boy!

Pray that Rachael's milk gets fat! And that Jimmie will too. He is finally 11lbs as of today.

Thank you for fighting for Jimmie!

Love,
Amber

Tuesday, September 15, 2009

Jimmie The Brave

I went up to the hospital this evening for a very quick visit. I got there at 8:35pm and visiting hours are over with at 9pm. I snapped a few pictures.

Jimmie was pretty subdued. Justin said he was definitely not handing out his smiles like usual.


But Jimmie was still being "Jimmie"!


Despite being hooked to the PH probe machine


A sat monitor . . .


And an i.v. in his little hand . . .


He was still my bright eyed curious . . .


funny and BRAVE little man!


He kept making that face. It was so cute!

The results of the biopsy could take up to a week to come in.

The PH study is going on right now. He has to lay flat for 12 hours and be sitting for 12 hours. Every time he exhibits a reflux symptom someone has to push a button on that little machine and then log it. He also is being fed over 30 minutes instead of the usual hour. This PH study is supposed to be the "golden ticket" for diagnosing reflux. We already got that diagnosis with the upper GI, but doctors are big on information gathering and this definitely gives a lot of information. It'll document how many times he refluxes in a 24 hour period and what his acid levels are.

Jimmie has been fussy today, but not hysterical. He has a lot of gas from the procedure. He was intubated during the sedation and of course the probe went down his throat and biopsies of his tissue were taken and now he has the PH probe down his throat, so I'm SURE his throat hurts.

Poor guy. Rachael and Justin are holding up. They are just very matter of fact about this whole thing. It needs to be done for them to get anywhere from here with Jimmie's issues. If Rachael and Justin and the Doctors were to decide to give Jimmie a G-Tube in the future an endoscopy would be a required procedure before having that done. So they feel like they are just getting things out of the way. It has been a long hard day, but we are all very grateful to God that Jimmie has handled everything so well! He has really done great!

Pray that their night goes alright and that Jimmie is comfortable enough to get some good rest. He is so exhausted.

Thank you for being Jimmie's prayer warriors!

Love,
Amber

In Recovery

Jimmie is in recovery and doing well. There were no obvious abnormalities spotted. So answers will either come (or not) with the biopsy results. I'm assuming we won't get those for a few days. Jimmie will be in the hospital for the 24 hour ph study. So hopefully tomorrow evening he'll get to go home. I'll update later if there is any more news or details! Thank you for your prayers!

Love,
Amber

Monday, September 14, 2009

Saucer Fun, NICU Reunion, Endoscopy Tomorrow

A few nights ago I cleaned up this airplane saucer that our kids loved and took it over to Jimmie. He felt so big when Rachael put him in there.





He was so pleased. He could stand on his skinny little legs all by himself.



He reached for the little things around him and was very focused.





While he was in there he had a huge poopy that went up his back and stomach. He ended up in the bath.

"Yes, Grandma Kathy- I knoooooooow . . . I'm so big and so cute. But wait until you discover this mess in my britches. " (-:



Funnily enough Rachael says every time she has put Jimmie in there he has a massive poop. Fun! He's getting his legs working and moving which gets his bowels moving too. That's a good thing. I have the most legendary poop story ever involving this saucer and my son Cole, but I'll spare you all. (-:

Jimmie please forgive me for spilling the beans, but seriously when you were in the NICU we prayed "poop prayers" for you!

And here's a little video treat for you. Jimmie LIVE in his saucer.

video

He actually loves it when Rachael wipes his mouth! Wow-- a kid that likes that?? Well- for now at least . . . He just seems to find it very curious and amusing.

Saturday Overland Park Regional had a NICU reunion outside at a park. Rachael was so excited to go and see how everyone was doing. She said everybody was doing great, but that everyone had some sort of medical issue they were dealing with. Which of course is to be expected. While Jimmie was in the NICU Rachael made friends with quite a few moms and - of course- came to personally care for their children and what they were going through as well. It was very special for Rachael to see everybody.





Even NNP Susan from Antepartum was there! She rocks! (-: And Kara- Rach is totally bummed she missed you. She would have loved to visit with you and show off her little man.

Rachael has taken all formula completely out of Jimmie's diet for the first time EVER. This was per Rachael not the Doctors. Although she has been keeping them "in the know". He has always had bottles fortified with formula. He is doing so good! He has no excess mucous! He is not puking at all which is huge and he is so much happier during feedings. Rachael has also been able to successfully increase his amounts that he's taking in per feeding. She also stopped the Prevacid per doctors orders. They want it all out of his system for the PH study. And since she stopped the Prevacid he has had much more of an appetite. He has never really shown much of a hunger drive as of late. Perhaps that's one of the ways the Prevacid is adversely effecting him. So far he hasn't been refluxing or in pain.

This is all so great . . .

Buuuuuut (sad I know), Jimmie is still not eating by mouth AND (BUT #2) He's not gaining weight.

The GI doctor hopes to get answers with the endoscopy . . .

Please please please pray tomorrow for our precious little man. He's supposed to be at Children's at 11:30am tomorrow. His endoscopy will happen soon after that. He will have to be fully sedated and he may be intubated as well. He will be there for at least 24 hours because they are also doing the PH study. And because of his chronic lung disease (all preemies have it) they will need to monitor his oxygen levels as he recovers from the sedation effects. We will be so glad to have this over with. Just pray that he would handle the sedation and the procedure well. And that we would get some answers.

I will update as soon as I hear how the procedure went. It could be a couple hours before we hear anything. There may be some immediate results, but there could also be a bit of a wait for any testing that is sent off to a lab.

I have to be honest, I have anxiety about surgical procedures. It's probably that we've had to do this twice with my daughter. It's just all around "not cool". Putting your precious child in the arms of strangers and waiting in the waiting room for word. Then the relief of knowing they are ok and in recovery quickly switches to a crazy desire to get to their bedside and grab them up and hold them close. But your not allowed to go to them while they are in recovery which really sucks! I just hate this!!!

Rachael seems a bit less dramatic (then me) about it. (-: But still she is really not looking forward to this whole thing.

Please pray!

We are so thankful that you all continue to fight for Jimmie.

Love,
Amber

Pre-Op appointment today

Actually since he's not really having surgery, I guess it's not a "pre-op". It's a meeting with the anesthesiologist and the doctor to discuss everything that will happen to Jimmie tomorrow during his endoscopy.

I will do a longer more detailed update about tomorrow and Jimmie's weekend later today!

Love,
Amber

Friday, September 11, 2009

Dear Jimmie - Happy 7th Month Birthday

Dear Jimmie,

Happy 7 month birthday!

Today is also a day of remembrance for a very tragic event that happened in this great country you live in. 8 years ago today terrorists attacked our country by flying airplanes full of passengers into the Pentagon in Washington D.C. and The World Trade Center towers in New York City. A 4th airplane also crashed into a field in Pennsylvania. Over 2900 people died that day. Someday you will learn about that terrible event and understand it's significance. I pray for everyone who lost loved ones that day that they would be comforted. And I pray that our country would never forget...

Feb. 11th 7 months ago today we saw your beautiful face, Jimmie- for the first time!

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 today!



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

















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














This month:

You have gained 1 pound 6 ounces. You are 10lbs 12oz.

You are still 23 3/4 inches long, but you've made up for that with your head!

Your head circumference has increased by 1 whole inch! Your head is 16 inches around.

Your eating issues progressed to the point this month- Jimmie, that you had to be hospitalized.



We were all very sad about that.



You had a rough time, but you are a very brave boy and we still enjoyed your beautiful dimples!



You had an upper GI test done while you were there and it showed only severe reflux. While you were there an occupational therapist consulted on your case and a nutritionist. You were in the hospital for exactly 1 week, at the end of which your Mommy told the doctors she was taking you home. You were mostly being fed by an NG tube and things were not progressing very quickly so your Mommy knew she and your Daddy could learn how to use the NG and live at home where there are less germs and chances of infection.

Your new home for the time being is with your Grandpa and Grandma Gravitt (Rod and Kathy). They have a nice big basement with 2 bedrooms, a living room, two bathrooms, and a little sink and fridge in a little kitchen like area. Your Mommy and Daddy actually lived there the first year of their marriage while they were building the house out in Odessa. They are very grateful to have such a nice place to live that is closer to the hospital and all of your doctors appointments. It's also closer to the volunteers who come over to help out with you by holding you and watching you so your Mommy and Daddy can rest or run errands. And of course whats not to like about living with Grandma and Grandpa!!! They love you so much and they help out by holding you every chance they can get! Your Grandma Kathy also does everybody's laundry. Whew, now that's love! (-: Me- your Auntie hates doing laundry. Also the wonderful ladies from your church headed up by your cousin Missy have been bringing meals to the Gravitt house. What a big blessing that has been for your Grandpa, Grandma, Mommy and Daddy.

You had a follow up appointment with a gastrointestinal specialist who wants to do a scope called an endoscopy to look at your insides to see if they can come up with some more answers and a solution for your problem. You'll have to be intubated and put to sleep for this procedure so your Mommy is nervous and not looking forward to it. The big news today is your endoscopy has been scheduled for THIS TUESDAY! We will all be saying a lot of extra prayers for you Tuesday morning Sept. 15th. You may end up being in the hospital again for a day or two following this procedure. If the hospital has a bed open you will be doing a 24 hour "ph probe study" as well. That's where they put a probe in your esophagus to measure your acid levels.

Over all your Mommy says all of the TKM she and your Ma have been doing along with the Prevacid has seemed to help your reflux a lot. You are not refluxing as much and when you do you don't scream in pain.

You still don't really eat by mouth. You are fed through a tube that is hooked to a pump that runs in your nose, down the back of your throat and into your belly.







You have been showing renewed interest in the nipple though and yesterday you actually nursed at the breast a couple of times!!! Not very well or for very long, but you really enjoyed it and so did your Mommy. We pray that this would continue and eventually that you would be able to take all of your feeds by mouth again soon.

Your Mommy has also experimented with all different concoctions of formula and breast milk. So far the results are that breast milk is definitely the best for your tummy, but you have a hard time gaining enough weight without extra supplementation.

As far as your lungs and O2: The general consensus among the doctors and your "family doctors" (as they affectionately called us in the NICU). Is that your little body was probably not quite ready to go without any oxygen support when you were taken off completely. That caused your body to work really hard in the breathing and oxygenation department and caused your digestions and eating functions to take a big hit. Your current struggles with eating started right when you went off oxygen completely. However the Doctors feel it would be better to not supplement you any O2 because your body needs to acclimate with all of it's systems. So your Mommy has taken you back off of the oxygen. Your lungs and sat levels have been and still are doing great!

You have 98 followers on your blog! (4 more than last time) And your Faithfulness Video Montage has been viewed 4,060 times! That's 648 views this month! Your "Jimmie's Wonderful World" montage has been viewed 526 times. That's 70 times this month. Your blog has been viewed 11,736 times this month for a total of 39,883 hits! You have a lot of very cool people who love to check on your progress Jimmie.

We introduced everyone to your very own real live Rottweiler puppy this month. Though you actually adopted him last month. (-:



His name is Mack. You love riding in your stroller everyday while you all take a walk with Mack.

You went to your first extended family gathering this month on Labor day. You hung out outside to lessen exposure to germs and no one but your Mommy, Daddy and Ma touched you. We all just stood around and looked at your beautiful self! (-:



You also got to experience a pool for the first time. Just on your feet though . . . Some day you'll be diving in.



I just can't get over how hilarious you look sitting like that, but still being so small. You are about the size of a 4 month old, but in some ways you have the strength and development of a 6th or 7th month old! Which is waaaaay ahead of the game Jimmie.



Your Mommy has been doing a great job as your advocate Jimmie. The Neo's at Children's Mercy were so impressed with her observations and documentation they said they could put her through school to become a nurse if she would sign something saying she would work for them for a few years! She'll think about it after you are older. The way she puts it is, "I have to get Jimmie on his feet first." And I'll add, "stay sane while getting Jimmie on his feet." (-: Your Mommy has taken some time for herself this month. She actually went on a little ladies day trip and left you at home with Grandpa, Grandma and Daddy. She and your Daddy have also spent some time praying with their pastor Brother David. Your Mommy also started back to work again this week. She'll be teaching dance classes 2 days a week for a few hours.

Jimmie you are getting so big! It is getting easier and easier to forget how small you really were when you were born. I have a flannel shirt on right now and as I look down at the pocket over my breast I realize you would have EASILY slid right into this pocket! I remember what your Mommy said through her tears the night you were born. She said, "I don't see how this is going to be OK. He's so small."

Well, Jimmie- by the power of our Holy Father it has been OK. It's been so much more than OK. Your life has been the most miraculous triumph that I will probably ever see in my lifetime. You are so healthy, strong and beautiful inside and out. Despite your eating struggles we remain so grateful for your ultimate triumph- LIFE! Not a day goes by, even the bad days when you are hurting and struggling to eat, that I don't thank God for your life. We all have our own pain and our own struggles and you are no different Jimmie, but that is life. And life is the most precious, glorious and beautiful gift. A gift- that because of your cousin Gabriella Keena, your sister Gracie Gravitt and you Jimmie; because of you- I will NEVER take life for granted.

I love you more than words can express Jimmie! I am so proud to be your Auntie.



Love you forever,
Auntie Amber