Hayride

These pictures were from the hayride last weekend. Justin, Rachael and Jimmie had a great time! Jimmie loves being outside in the fresh air.









I got to spend some time with Jimmie today and he's doing good. He is still fighting this cold, but he's is handling it so well. I'm amazed!

Since the weaning attempt he has definitely been showing more interest in drinking. I saw the difference today. I had not hung out with Jimmie since before the weaning attempt so it was so good to see him again. Whenever he got hungry he wanted his bottle. It seemed like he actually connected it again to being hungry and filling his tummy. He still is not sucking efficiently, but we are hopeful that will come. Especially with more aggressive weaning again in the near future.

Jimmie grabbed hold of Rachael's shirt today while he was laying on his back. He then proceeded to pull himself into a seated position an then up to standing! Crazy! I cannot believe how strong that kid is. It's unbelievable- really! He's pushing all the way up on his hands now so that his arms are straight. It won't be long before he figures out how to get his knees under him and then watch out world, here comes Jimmie!

I'm planning/hoping to get pictures of Jimmie tomorrow in his Halloween getup. (-:

Thank you for your prayers!

Love,
Amber

Better Sucking Reflex

Jimmie had a coughing fit this morning where he was choking and couldn't catch his breath. It kind of scared Rachael a little so she and Justin took him in to the Pediatrician to get him looked over. Dr. S. was busy so the NP took a look at Jimmie. Everything looks good. So far Jimmie is handling his first sickness really well. His lungs are clear, his ears look good, his oxygen saturation is high 90's and he isn't feverish. So the NP isn't concerned at all. Rachael and Justin will obviously continue to watch and monitor Jimmie very closely until his symptoms go away.

As far as feeding today Rachael has left the tube in and isn't pushing Jimmie at all because she doesn't want to further stress him. Jimmie however has been showing much more interest and is trying on his own to suck his bottle or sippy. Rachael said she's noticing that his tongue seems to be placed better and that his attempts are improving. He's not really improving any on volume yet, but she hopes that will follow.

She also said that he is now rolling from his back to his stomach (he's been rolling from his stomach to his back for a few weeks) and sitting with a little bit of front support. He also tries to sit up from lying flat on his back! He can't really get up, but it looks like he's doing a sit up.

Keep praying for our Jimmie Jim Jim to get over his cold safely and quickly.

As soon as Rachael feels Jimmie has recovered from this cold they will start the weaning process again in earnest.

Thank you so much for praying.

Love,
Amber

P.S. Just in case you follow Mckmama's blog and are unaware . . . Stellan needs your prayers right now. He is back in the PICU struggling with SVT, on his 1st birthday. )-:

Weaning Update

Dr. H. remains cautiously optimistic, even after seeing Jimmie today and speaking with Rachael, that weaning will be successful. Jimmie is indeed sick, but Dr. H. hooked him up to a sat monitor and Jimmie was satting 97! This is great. He is continuing to have a very runny nose and a cough though so Dr. H. does not really want to continue to stress him further by aggressively weaning until he gets over his cold. As of this morning Jimmie has lost 4 ounces. Dr. H. wasn't distressed over this. He expects some weight loss.

Rachael did not pull Jimmie's tube this morning, but Jimmie did- little stinker. All of the snot running out of his nose is loosening the tape that the tube sticks too. )-: So they waited and put it back in later this afternoon. Without really trying too hard, as of 6pm- Jimmie had taken 50 mls or so by mouth. He is receiving tube feeds and will as long as he has these cold symptoms.

Rachael spoke with an OT (on the phone) from St. Lukes that Dr. H. recommends. He said she works wonders with kids who have eating issues. She called to interview Rachael to see if she thought she could help them. They are in the process of double checking some insurance things and then hopefully Jimmie will see this new OT next week. She rarely sees people outside of her normal job so she would be taking Jimmie on because Dr. H. called her personally and asked if she would.

Dr. H. really wants Rachael to fortify her breastmilk with a formula called Enfamil Enfacare which is for low birth weight preemies. His reasons are: 1. For extra calcium for Jimmie's bones. 2. Because Jimmie won't have to take as much volume to grow on.

Rachael likes that reasoning, but does not like all of the ingredients in that formula. Neither does Jimmie's Naturopath Dr. C. So Rachael has an appointment with Dr. C. on Monday and she will bring in the Enfamil so that Dr. C. can try and put together a recipe of something comparable and preferable. If you remember Jimmie has a really hard time tolerating any type of formula. This Enfamil and many others give him a lot of mucous and an upset stomach.

To be honest- I have to take notes when I talk on the phone to Rachael about these updates. Jimmie has 3 or 4 OT's, 1 Nutritionist, 1 Naturopath, 1 Pediatrician, 1 Neonate 1 Developmental Pediatrician and 1 Gastroenterologist. ( Did I get them all?) Rachael is easily on the phone 2 or 3 times a day with any one of those specialists. I honestly do not know how she does it. She'll say, "I called Dr. so and so" and I'll say, "who's that again?" Rachael is a supermom. She is SO proactive about Jimmie's care and development it's truly inspirational. Am I surprised about this? No. I lived with her for 23 years. But though I'm not surprised I'm still in awe.

Rachael mentioned how far Jimmie still has to go tonight. She still would not be surprised at all if this whole thing ends in a g-tube. But she won't call it quits without good reason. It is so wonderful that we have Dr. H. because he will have an opinion about when to wave the white flag with this as well. Jimmie ended up taking about 125mls yesterday. This is good, but just to give you an idea of how far he has to go, Jimmie gets about *800* mls in his tube over a 24 hour period. He may do fine on a little less than that, but he need to take in about 8 TIMES what he has achieved so far. 125mls is nothing to sneeze at for Jimmie who was taking next to nothing before we started this, but still that 800mls looks rather daunting considering how hard he worked yesterday for the 125.

I told Rachael that I was going to hang on to Dr. H.'s "cautiously optimistic" statement and keep praying like crazy for Jimmie to do this! She is grateful for all of the prayers and positive thinking. I know all of you will join me in that. Repeat after me! "Go Jimmie Go! Go Jimmie Go! Go Jimmie Go!" I don't know how many times I said that when he was in the NICU. (-:

Pray especially that Jimmie gets over his cold quickly and easily so that weaning can continue again in earnest.

Thank you so much for your support. You all will never know how much it means to us!

Love,
Amber

Weaning Revised

Rachael hasn't actually taken Jimmie to Dr. H. yet- that will happen later this morning. However Rachael did talk to Dr. H. late last night about Jimmie. He now has a wet sounding cough as well as a runny nose. Rachael gave him some tylenol in the night because he was having a really hard time sleeping. Dr. H. advised Rachael not to pull the tube this morning.

Dr. H. is thinking that if Jimmie continues to handle being sick as well as he has so far that they can just kind of revise their plan a bit. Today they will most likely leave the tube in, but continue to aggressively work with Jimmie on feeding by mouth. Then Rachael will tube feed as she feels Jimmie needs it, but not necessarily a full feed or every 3 hours. If Dr. H. feels- after looking over Jimmie this morning- that he needs more of a medical check-up, i.e. a look in Jimmie's ears and an oxygen sat test, then Rachael will take Jimmie to their regular pediatrician Dr. S.

Rachael said yesterday was hard, but that she's not giving up yet. (-:

Thank you so much for your support and prayers! I'll update again this evening.

Love,
Amber

Don't Give Up

I need to get some new pictures of our little man without the tube!

I spoke with my mom a little after 6pm. She has been there with Rachael and Jimmie for most of the day. Justin is working his 24 hour shift at the fire station. Today has been harder for Jimmie than yesterday in that he isn't taking his solids as well and all eating and drinking has been more of a struggle. However he has taken in more liquid than yesterday so far. Yesterday around 6pm he'd taken in about 80mls- today at 6pm he's taken in about 116mls.

The bad news is his nose has been running all day and he's been choking on mucous. This makes mom and Rachael very suspicious that he may indeed have caught Rachael's cold. Which means it's very likely that he has a sore throat. This throws a monkey wrench into everything. Dr. H. is aware of his symptoms and has advised Rachael to do like they did yesterday and tube feed Jimmie at 9pm, 12am and 3am . . . Then tomorrow morning he will look at Jimmie in his clinic and if Jimmie does indeed appear to be sick Dr. H. will probably make the call to postpone this weaning attempt.

This is very discouraging to Rachael as it will probably be a couple of weeks before they try again. Please pray that she'll have patience and perseverance. Mom said it is safe to say Rachael was very weary today. Making statements that sounded like she feels the g-tube is inevitable.

Pray that Rachael and Justin would continue to have hope and strength. I think Jimmie can do this, but that it may be a long process. A process that takes a lot of patience and stamina. Rachael comes by "stamina" very naturally- "patience" however is a bit more challenging for her.

Pray for Jimmie's anxiety. Mom said it's very apparent that he is anxious as he tries to eat especially drink. She says when he needs to burp he basically freaks out and then when just air comes out and no puke he looks relieved. He had so many scary and painful pukes before his reflux was under control that he was obviously very traumatized by it. And he still pukes, not necessarily scary or painful, but he pukes enough that he doesn't forget about it. He puked at the end of two out of his 3 tube feeds last night. Dr. H. has suggested that Rachael put Jimmie back on the Zantac just to make sure that his gastritis isn't causing him pain and contributing to his struggle with eating. Thus far Rachael really hasn't felt that he's been in pain, but more that he is anxious and scared. But she will do as Dr. H. has recommended with the Zantac.

Our friend Chris is there with Rachael now and Rod and Kathy will help her this evening and overnight as they always do.

I will update if I hear anything new tonight, but if not then I'll post after Jimmie's appointment with Dr. H. tomorrow.

Thank you so much for your support, prayers and words of encouragement.

Love,
Amber

30mls So Far . . .

This picture is from last week. But I imagine it's appropriate for how Jimmie is feeling . .



Jimmie took 30mls by chewing purposely on the bottle nipple and swallowing this morning. Rachael said he was clearly trying grab the nipple with his hands and squeeze the liquid into his mouth. He gets frustrated very quickly when trying to drink and although he did suck and swallow last night, he has not really done that today. In fact so far (as of 1:15pm) he has not really taken in anything else since this morning.

Rachael has a little more hope today after seeing him be so desperately hungry last night that he started sucking. She said if that's what it takes they'll continue on. It's just walking that tight rope of not allowing Jimmie to get dehydrated, malnourished or have his stomach shrink. And emotionally it's not easy. Jimmie was very brave yesterday, but he was very stressed and anxious. Consequently his nose has started to run. It's clear and he has no fever or apparent discomfort, but Rachael is afraid he's caught her cold. If Jimmie gets worse in that regard this weaning attempt will have to be put on hold. So pray that Jimmie does not get sick.

Rachael has read that it is common for kids to get sick while weaning. It is stressful and their immune system can take a hit. Jimmie will go see Dr. H. in the morning so it will be nice to have him looked over to make sure he is indeed holding up under this.

Rachael and Justin are hanging in there, but please keep lifting them up as well. It is hard for them to watch their little boy struggle to take in so little. It is hard to hear him crying from hunger.

Dr. H. is assuring them that this is what it takes for those natural feeding instincts to kick back in. Jimmie got tube fed for 3 feedings last night. That filled him up and gave him hydration and nutrients for a new attempt today.

Come on little man you can do it! We know you can do this Jimmie! Go Jimmie go!

Thank you for fighting for Jimmie!

Love,
Amber

Rachael's Text

I got a text message from Rach last night around 10pm saying, "Jimmie sucked, YES sucked 15 mls!"

"AWESOME!" is what I wrote back. Jimmie has not actually sucked and swallowed for a couple of months so that is exciting.

I have not heard from Rachael yet today, but I will update when I have any news.

Thank you so much for your prayers. We need to keep fighting for Jimmie!

Love,
Amber

Hungry Baby

Jimmie has taken a little over 2 ounces today total. He has eaten his solids as usual, but is having a really hard time taking in liquid. He is not quite 5 months old adjusted age so the majority of his nutrition would/should come from his mommy's milk. He needs be taking in 18 to 24 ounces in a 24 hour period.

Rachael said if you would have told her Jimmie would take 80mls today she wouldn't have believed it. So in that sense Jimmie has done better than she thought he would. However this evening he is hungry, sad and frustrated. He doesn't understand why his belly is empty and he tries so hard with the bottle, but just can't seem to settle down, suck and swallow. They have used a sippy as well and it's the same.

Rachael just got off the phone with Dr. H. He asked her if she saw any improvement at all and she answered that she saw Jimmie's rooting reflex with the bottle and that hasn't been present for a while, but other than that, No. He is very hungry and still not taking in even enough to take the edge off.

Dr. H. is having Rachael put the tube back in for Jimmie's 9pm, 12am and 3am feeds and then they are to take it back out to try again tomorrow. They already have an appointment to acess how Jimmie is handling this physically with Dr. H. Wednesday morning.

Rachael is having a very hard time seeing how this scenario is going to change. It is only the first day so we are encouraging her that there is still hope!

Please keep praying!

Love,
Amber

Today Is The Day

Thank you all for your prayers and words of encouragement! Today is the big day. I have not spoken with Rachael yet, but if everything is going according to plan the tube came out after Jimmie's 3:30am feed. Dr. H. called Rachael yesterday just to check in before today and to encourage her. That was unexpected and so great. He said he thought that Rachael ought to give Jimmie some tylenol today for any throat pain he may have. The irritation from the tube coming out is usually painful. We don't want Jimmie to have any reason not to eat.

We want massive prayers going up for Jimmie today, that he would eat and DRINK. Please also add Rachael and Justin to your prayers. They are both going to be home today, but unfortunately Rachael *is* sick. She is running a low grade fever, has a sore throat, headache and really bad earache. Please pray for her that she gets healthy quickly and that no one else (especially Jimmie) gets this. Very unfortunate timing that Rachael would get sick right now.

Eat Jimmie eat. Go Jimmie go!!

Love,
Amber

P.S. I will update more today as I hear from Rachael!

Rachael Sick? Tube Woes

Jimmie and Justin are fine, but Rachael isn't feeling well. She has a slight sore throat and some congestion. Pray for her that she gets over it quickly and that nobody else catches it.

Jimmie is starting to be more receptive of other solids. He has been loving peas the last couple of days. Both plain peas and peas with brown rice. He really is doing very well with solids. Early Monday morning is when they will take his tube out. Rachael is trying not to dread it. She is actually excited about starting on the weaning process, but she is *not* looking forward to the stress of Jimmie being hungry or thirsty.

Getting rid of that tube would just be so amazing. It's so hard to keep Jimmie from pulling it out. The other morning he pulled it out and ripped the tape off of his face. He cried and cried. Then it took a few tries to get it back in and that is always painful for Jimmie as well. Rachael and Jimmie came over to my house right after that whole fiasco and both of them looked so sad and upset it broke my heart. I took Jimmie out of his seat and held him close and kissed his little cheeks as I told him, "It'll all be okay. It'll be better some day-- little man". Rachael and Justin are just so sick of that whole thing happening and sick of watching Jimmie being hurt by that tube. They are very much "suck it up and deal with it" type people, but after watching their baby uncomfortable and hurting over an over it's really wearing on them.

Rachael has said that if they are unsuccessful with weaning him she is leaning towards getting a g-tube. Of course in the event that weaning doesn't work she will then seriously do her research on the g-tubes to make sure she truly does want to go that route. What we obviously want most of all is for Jimmie to wean from the tube. Rachael and Justin would just be deliriously happy and relieved.

I know you will join me in praying so hard that this is the case

Tonight Rachael and Justin were taking Jimmie on a hayride with their church. I'm hoping Rachael took the camera! (-:

Thank you for your support and prayers!

Love,
Amber

Hope!

We have Hope! Hope that someday *sooner* rather than later Jimmie's beautiful face will be free from his tube. Hope that Jimmie will once again be able to suck and swallow. Hope that Jimmie will eat enough by mouth to grow on. Hope that was given to us today from the Lord through a new doctor who's initial is most appropriately "H"! (-:

Dr. H was exactly what Rachael has been looking for. They walked in to his small waiting room today and he ushered them back into a big room where they all just plopped down on the floor and played with Jimmie while they discussed everything. Dr. H. thought Jimmie looked wonderful. He saw no other issues with Jimmie developmentally other than his feeding problem. He charted Jimmie on the special preemie growth chart. Jimmie is tall and thin. He is in the 75th percentile in height (25 inches) and 10 percentile in weight (12lbs 3ozs). Dr. H. saw no problem with this and feels Jimmie will just naturally be a skinny kid. Dr. H. would like to see Rachael start fortifying again in the future for calcium purposes (for Jimmie's bones), but for now they will focus on weaning first.

The plan: (Yes folks there is finally A PLAN!!!!) Jimmie will go back on Zantac to make sure that indeed everything is healed and he's not hurting as they try to wean. Monday morning after Jimmie's 3:30am feed they will take out the tube. If after 12 hours Jimmie has taken absolutely nothing by mouth they will consult on the phone and possibly wait until the 18th hour before resorting to the tube again. They are to call Dr. H. before they put the tube back in though. He is not worried right now about a little bit of weight loss- only dehydration. Dr. H. feels this may take a few times of letting Jimmie go for 12 to 18 hours not taking in much- rehydrate and then try again. He is totally impressed with Rachael and feels completely confident weaning Jimmie this way with the kind of mother Rachael is. (Nothing gets by her! And I mean nothin!)

Dr. H's wife is an OT and she came in and looked at Jimmie while they were there and gave Rachael some great tips to help Jimmie regain his suck. Thus far, despite asking, this is the first time an OT has offered suggestions about this.

Dr. H. is not worried about Jimmie's brain-- the Neo's other places keep talking about how Jimmie isn't gaining fast enough and that this time right now is crucial for brain development and that he needs to be gaining better. Dr. H. says that because Rachael is exclusively breast feeding there is no need to worry about this at all. He says breast milk feeds the brain better than anything! This was so great for Rachael to hear and affirming of the way she's been thinking. He was very supportive and encouraging about Rachael's persistence with the breast milk!

As far as prognosis . .? Dr. H. says he has seen kids like Jimmie, but not very many. He says at Jimmie's age the right time is NOW! If they wait too much longer it just gets harder and harder. He said that as far as other attempts at weaning like this he's been moderately successful. We are hoping that Jimmie is a strike in his success column. This is not going to be easy for Jimmie or Rachael and Justin so please pray for strength. Pray that Jimmie's mind will be renewed by the Lord. Pray that Jimmie will be safe and healthy as well.

Hope is tasting very sweet today for Rachael and Justin. Rachael was so excited and relieved that she fought back tears throughout the appointment. We are grateful to Jimmie's wonderful pediatrician Dr. S. for finding and referring Jimmie to Dr. H.

Lets all really ramp up our efforts in prayer for Jimmie as they prepare for this weaning attempt. Thank you for fighting for Jimmie!

Love,
Amber

Developmental Pediatrician

Dr. S. called Rachael yesterday to tell her that he had gotten a hold of that Doctor I've spoken about. He's a Developmental Pediatrician here in the area. He had a cancellation on Wednesday afternoon so Jimmie will see him tomorrow!!!! We are hoping that this Dr. will offer us some confident and experienced support in the area of tube weaning!

I know Rachael is anxious to get going on this. She has continued to be in contact with the director of the Graz Clinic (Dr. M). Dr. M. feels that Jimmie is in a good position to wean. She said the younger they are the easier it is and she sees no reason to wait. The Graz Clinic's email coaching program continues to be the option Rachael and Justin will fall back on as last resort before going back to Children's Mercy and their g-tube plan.

I'm praying this local Doctor will offer what we are looking for!

Here are some more pictures from Sunday:

Jimmie watching the Chief's game! Look at that concentration.














Go Jimmie go! We know you can wean! (-:

Love,
Amber

Beautiful Boy

This is the latest evaluation from one of Jimmie's therapist's:

"10/15/09
Weight bearing and bouncing. Great eye contact.
Looks back at mom. Cooing and now screaming ahh.
Rolling over from tummy to back. Trying to scoot.
Pivots on tummy. Some prop sitting - briefly.
Loves saucer. Activates toys bats at them brings to his mouth.
Nice head control. Likes to walk and really watches the dogs.
Looks at pictures and tries to pats pics. Really responds to mom.
Imitates some mouth action. Sleeping better.
Usually happy. Pats at legs. Some vocal play.
Holds an item and drops it.

Things to work on:
Transferring items between hands
Holding two items.
Imitation of actions: banging toys together. Clapping
Supported sitting.
Core muscle activities- put on hip, have straddle your leg and keep
his balance.
Start looking for partially hidden objects.
Looking for person when name mentioned - mama dada
Starting to hear more sounds - baba mama dada
Looks/turns to name."

So Jimmie is doing very well physically and developmentally. He is gaining weight very slowly though. Rachael is trying to remain positive and not fixate on that. So many preemie mom's have told her they wish they had not been so obsessively concerned over weight gain. As long as Jimmie continues to grow and develop normally we are fine with him being small for a while.

We are still waiting for Dr. S. to find someone who will help with a tube weaning attempt. Dr. S. and Rachael had a conversation a few days ago and he was planning to call the doctor he knows who left Children's Mercy's feeding clinic and struck out on his own. Dr. S. expressed some frustration that mirrors Rachael's in that he just feels like this is not his area of expertise and is not confident to wean Jimmie on his own.(Neither is Rachael-duh!) He also feels like Rachael does in regards to Children's very conservative approach on weaning. Rachael feels supported, but her frustration is not lessened because she is all about results! (-:

Rachael could also use prayers still for her moods. She is struggling with really intense mood swings. One moment she'll be way way down and then in the same day she'll be up and totally fine. It's exhausting for her and Justin and everyone close by... Over all though she feels she is learning to recognize these moods and is trying really hard to limit their effect. Just keep praying for her- I feel we are going in the right direction with this just slowly and painfully...

Jimmie still will pretty much only eat sweet potatoes! He's not turning orange yet. He does however get cuter and cuter and cuter by the day. Thanks dad for the awesome pictures!

Crazy beautiful!


It should be illegal to be this cute!






Jimmie giggling.




I love this gorgeous boy!


Jimmie and Pa.




Thank you for praying for Justin, Rachael and Jimmie!

Love,
Amber

Pregnancy And Infant Loss Remembrance Day

Today is Pregnancy and Infant Loss Remembrance Day. These are for Gabby and Gracie.



God bless you all as you remember your precious babies today. May you be filled with Love so that it spills out of you and leaves peace and comfort in it's wake.

Love,
Amber

Small Improvements

The last few days have seen some small improvements with feeding, well at least related to feeding. Jimmie's OT (Occupational Therapist) gave Rachael a Nook Brush which is a little tool/brush they are supposed to put in Jimmie's mouth to desensitize him and help with his oral aversions. Rachael and Justin have been working on that with Jimmie every day for a few weeks now.

The past few days he's been allowing it in his mouth without a fit. Also he's starting to take the spoon or sippy or bottle out of Rachael's hands and put it in his own mouth!!! Rachael said last night he took the bottle in his own hands and put it into his mouth. And his tongue was in the right place underneath the nipple. He's not really sucking or drinking anything, but still . . . it's an improvement. (-:

As far as solids go-- he takes really good amounts when it's sweet potatoes, otherwise, everything else she's tried- not so much.

I'm gonna start calling him my little Sweet Potato. (-:

Rachael is waiting patiently on Dr. S. to get back with her about weaning help. We are hoping he calls with a lead soon.

Thank you so much for continuing to fight for Jimmie with your prayers. We are so blessed by you all.

Love,
Amber

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!

Make an on-line slide show at www.OneTrueMedia.com

That's 545 views this month!

Your "Jimmie's Wonderful World" montage has been viewed 584 times.

Make video montages at www.OneTrueMedia.com

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