Monday, August 31, 2009

Tube Out And Back In

Jimmie puked up his tube at the start of his 6am feed this morning. So they left the tube out and tried to finish his feed by mouth. Jimmie just refused and went to sleep. Then he woke up hungry, sucking on his hands and fussing, so they tried again and again he struggled and finally gave up and went to sleep. Rinse and repeat . . . Rachael said he ended up going about 10 hours without eating before they gave up. Neither Rachael nor Justin has ever put the tube in, but they've watched very closely as it was explained and demonstrated. Rachael held Jimmie down and Justin put the tube back in with no problems.

That was a good feeling for them to know they can do that without help. Not so great feelings about the fact that Jimmie would rather starve and sleep then take a bottle.

Rachael has a call in to the OT from First Steps. Jimmie has an appointment with the GI people Wednesday and with the Neonatologist Thursday. Little Jimmie has pretty much decided he wants nothing to do with sucking and swallowing his food. The reasons why we can only guess. Of course Rachael suspects his throat hurts . . . He still refluxes and sometimes screams with it. Perhaps he just now has completely associated the bottle with pain. At any rate Rachael is not sure what to do. She's not sure if she should keep offering the bottle at every feeding and at times really push Jimmie to take some by mouth. . .? Or of she should stop trying altogether (and for how long?)so maybe he'll forget the bad associations with sucking and swallowing . . .?

These are all questions Rachael will be asking this week.

Rachael does have one little goal she has set on her own and is working on. She is very slowly upping Jimmie's volume at his feeds so that she can eventually start feeding him every 4 hours instead of every 3. This will help free up a little more time in between feedings for other things. Jimmie is tube fed over an hour so with all of the preperation, clean up and reflux precautions- there is little time to do much else.

Keep praying for Rachael too. We are encouraging her to spend some time on herself whether it be formal counseling or meetings with her pastor or both . . . She needs to enjoy her beautiful child and life in general. She doesn't want to miss Jimmie by looking and focusing only on his medical issues and obsessing over them with her thoughts. Pray she can take every thought captive to the Lord and receive his Divine Perspective and grace to deal with the hard parts. And please pray that somehow she can sleep. She is so sleep deprived at this point that even when Rod or Justin stay up all night on Jimmie duty she still can't sleep. Sleep deprivation can make you crazy in and of itself!

We are so grateful for all of your comments, encouragement and prayers! Our Jimmie is so amazing and so blessed!!!





Love,
Amber

Sunday, August 30, 2009

Picture Perfect

Yesterday Jimmie peed on his outfit and I talked Rach into leaving his clothes off (she rarely does this because she doesn't want him to get cold and burn extra calories) for a few minutes to get some pictures. I love baby skin! And Jimmie is so picture perfect! (-:



Jimmie is so strong. He tries to sit up by himself!


Jimmie looks so funny because he is already trying to sit up, he holds his head amazingly. He is so strong I won't be surprised if he sitting unsupported in a couple of months. It looks weird and funny though because he is still so small! It's hard to get the perspective in pictures, but he's just a little bigger than most newborns.


When you lay Jimmie down on his back he goes crazy "movin and groovin"! The camera we use has a hard time keeping him in focus. (-:





Jimmie was hilarious yesterday with his tongue.


This is Ma holding Jimmie while he's being tube fed. I tried giving him his bottle. He let it be in his mouth for a few minutes and he chewed on the nipple a little and then refused it.






We had cartoons on t.v. for my kids to watch. Jimmie was more into it then Cole and McKenna.




At one point Cole shut the doors to the entertainment center and covered up the t.v. Jimmie yelled at him until he opened the doors again. It was so funny!!!








Pray for wisdom in how long we leave Jimmie on the NG. We are concerned because he hardly ever eats by mouth anymore. We basically have to choose one set of problems or another. Either he is in danger of dehydration and growing slowly with a constant struggle to get him to eat enough to get by. Or he is fed, but not eating by mouth at all and could develop aversions or bad habit etc... Also the tube itself is exacerbating his reflux by causing the valve in his stomach to be held open all the time. Maybe we could experiement by going back and forth some. Taking the tube out for a day or two and work on eating by mouth and then put it back in for nutrition purposes. We would need to learn how to put the tube in obviously, but anyway . . . these are some of the things going through our minds.

Also pray for Rachael, she is way back down in the dumps again and struggling with depression. She still needs to let go so she can receive grace.

Thank you for your continued prayers!

Love,
Amber

Saturday, August 29, 2009

Long Day, Short Post

It's been a long day around here and we are just now getting in and getting the kids to bed, so this will be short.

Jimmie is the same. He's not eating by mouth, still refluxing and is at times uncomfortable.

The kids and I went to visit him today and Jimmie is also charming, happy and totally adorable! I took pictures which I'll post tomorrow.

Thank you for your prayers!

Love,
Amber

Friday, August 28, 2009

The New Precipice

Jimmie weighed 10 lbs 6 oz at his appointment today with Dr. S. Nothing new was really discussed. Dr. S. will not prescribe Reglan . . . he doesn't feel comfortable with it. He also won't advise Rachael to up Jimmie's dose of Prevacid. He did advise Rachael to keep her appointments with the Neo and the Gastroenterologist. Dr. S. feels the more specialists on board the better.

Rachael is losing hope that anybody will really be able to fix this. That one great feed last night was just that- "one" great feed. He hasn't eaten by mouth since and has been uncomfortable with all of his feeds today.

What everybody has said is that this kind of thing usually resolves itself within the first year. I asked Rachael if that meant a year from birth or Jimmie's developmental 1st year. Rach said she's assuming developmental. She says that's how everybody talks and operates with micro-preemies. While the fact that this usually resolves itself is comforting to us. The amount of time left that we could possibly be struggling with this is overwhelming.

Today is Jimmie's 3 month developmental birthday. His due date was May 28th. He'll be 7 months old (from birth) in two weeks, but is really only 3 months old developmentally.

Remember when I wrote this back in January?

"I was up early this morning praying and God brought the story of “Hinds Feet On High Places by Hannah Hurnard- to my mind. Rachael and I wrote and choreographed a ballet based on that book which our students performed beautifully a couple years ago. I realized that Rachael and those of us who are very close to her are Much Afraid and her companions are “Sorrow” and “Suffering” and that she is standing at the Precipice Injury and that Craven Fear keeps attacking her. The precipice seems absolutely impossible to climb, but in the story Much Afraid calls out to the Shepherd and he brings a cordial for Much Afraid to drink called the “Spirit of Grace and Comfort” . . . She drinks it and Sorrow and Suffering tie their bodies to hers with ropes and help her up the Precipice. When she slips they catch her and when she needs to-- she drinks the cordial of Grace and Comfort. In the end of the story Much Afraid makes it to the High Places and the Shepherd gives her a new name “Grace and Glory” and her companions- “Sorrow” and Suffering” have new names- “Joy” and “Peace”.

Back then I said our Precipice Injury was the 3 weeks to viability. We made it to the top of that precipice and Jimmie is here today- alive and beautiful, an amazing miracle.

We have a new precipice. This precipice could take months to climb.

Rachael is sad and discouraged and totally exhausted. She's sad she can't take care of him in a normal way like a normal mom. She is sad other people have to hold and take care of her son so she can sleep, she's sad he's in pain a lot of the time. She's sad she and Justin can't function without help, she's sad they can't live in their own home. She fears for Jimmie's future and his well being.

Please pray that Rachael can receive that cordial of "grace and comfort" that our Shepherd is offering. Pray that we can climb this precipice and that Joy and Peace will take the place of Sorrow and Suffering as our new companions.

We love you Lord, and we thank you for Jimmie. We ask you to heal his body and help him to eat normally. We ask for grace for Rachael, Justin and those of us close to them during this time. Guide us in Jimmie's care.

Thank you for supporting us with your love and prayers.

Love,
Amber

Thursday, August 27, 2009

For Now- YEAH!!

Jimmie has been a happy boy today. Very animated, smiling, talking... He is getting close to rolling from his back to his stomach!

He took his 6pm feed by mouth! 60mls of it. So Rachael only had to supplement him 15 mls. We have learned to just take everything a moment at a time with Jimmie and his feeds. So at this moment we are happy! (-: Who knows what the next feed may bring... So for now, YEAH!!!

Rachael talked with Jimmie's nutritionist today and she said it would be okay to switch to all breast milk and cut out those two formula feedings. She is still fortifying the breast milk, but that seems to be treating Jimmie's tummy much better!

Jimmie's appointment with Dr. S. is tomorrow. I'll let you know how that goes . . .

Thank you for your continued prayers in this battle . . .

Love,
Amber

Wednesday, August 26, 2009

Roller Coaster

And we go back down . . . Thank you for riding this roller coaster with us. Last night Jimmie had a bad reflux episode and screamed in pain. Ever since he has refused to eat by mouth. Today he has seemed to be refluxing more, but isn't in a lot of pain with it. After a bad episode it seems it takes a day or two before he attempts the bottle again. Maybe it hurts to swallow? Maybe he's scared it'll happen again? He can't tell us- so we don't know for sure . . . Poor guy.

Rachael said he tries so hard and he is so brave. He continues to be such an amazingly happy baby. Through it all he maintains such joy and peace. You really couldn't even call him a fussy baby. He's MUCH less fussy then both of my children were, "are" for that matter. (-: This is a huge blessing to us! Thank you Lord.

It is apparent though when Jimmie is uncomfortable and in pain with his feeds and it's very rough to see him trying so hard and suffering. Rachael has noticed he seems to have a much harder time with his 2 formula feeds then the others which are mostly breast milk. She's going to speak to Jimmie's nutritionist about this tomorrow. She'll also speak to Jimmie's Pediatrician Dr. S. about upping his dose of Prevacid. Jimmie has an appointment with Dr. S. tomorrow I think. Or maybe it's a Friday . . . I'll be updating everyday while we are in this crisis anyway.

Here is Rachael listening for tube placement tonight. Thanks mom for these pictures! Mom has been working very hard doing TKM therapy on Jimmie the last few days! We find it very helpful and comforting to have this hands on energy work as part of Jimmie's therapy. Despite Jimmie's terrible reflux his upper GI scope showed no scarring or narrowing of his airway or esophegus, which is so awesome! We know that the TKM is helping Jimmie in this journey as it has since before he was born.






He was still in the hospital here . . . so cute! (-:



Thank you for fighting for Jimmie! We appreciate your prayers.

Love,
Amber

Tuesday, August 25, 2009

Improvement

Jimmie is still doing better as far as his pain and puking goes. Rachael is feeling like this improvement is due to using mostly breast milk and also cutting out the Erythromycin.

Also Jimmie has taken about an ounce by mouth with his feeds today! This is so encouraging to us! Go Jimmie go!

Rachael is doing well. She is keeping her chin up. She has worked very hard on her perspective lately and she is grateful for the tube. She is grateful that she can fill Jimmie's belly when he is hungry even if he refuses the bottle. She and Justin are requiring a lot of help though. The process of feeding Jimmie is complicated and takes a good 90 minutes.

You have to mix Jimmie's concoction of breast milk and fortifier. Rachael is doing this in bulk for the day. Then you have to warm his milk. Then you put the milk in the bag that's connected to the pump. You prime the tubing- meaning you work the milk down it to the end and then you blow air in Jimmie's portion of the tubing and listen with a stethoscope to Jimmie's stomach to make sure the tube is in the right place. Then you hook Jimmie up to the pump and you program how many mls you want to go in over whatever time frame is appropriate. Right now he is taking his feeds over an hour. After the hour is up you unhook Jimmie from the pump and flush his portion of the tube with water. Then you flush the rest of the tubing and rinse the bag. Then you either hold Jimmie upright or watch him closely while he's sleeping in his nap nanny for another hour to make sure he has the help he needs if he starts puking. Since Rachael offers him a bottle while his tube feed starts she also gets that ready. Depending how much he ends up taking by mouth she looks at how much he has had on the pump and re-programs the rest of his feed after he's done with his bottle. That way he doesn't get too much. He gets his dose of Prevacid twice a day and two feeds that are just formula twice a day for calorie purposes. Rachael gives him his formula feeds and his dose of Prevacid at 9am and 9pm. Jimmie eats at 3, 6, 9, 12 around the clock. So Rachael basically has 90 minutes to sleep in between feedings. However she also has to pump breast milk 3 or 4 times in a 24 hour period as well.

Is you head spinning? Mine is . . . Seriously, it's a good thing Rachael is Super Mom! She just shrugs her shoulders and says, "Yeah it's intense, but you gotta do what you gotta do."

Justin knows how to work the pump and feed Jimmie. Rod, Kathy and Mom will probably learn as well.

Rod spent the night at the hospital with Rachael Saturday night when Justin had to work. He has a great touch with Jimmie and he pretty much sacrificed his night so Rach could sleep. The nurses were still running the pump at that point, but Rod was up most of the night taking care of Jimmie. What an AWESOME grandpa.

We are just trying to take this a day at a time, but also having to discuss the future. As in Rachael's ability to do anything else other than take care of Jimmie. We run a dance program together... We are so thankful for our big awesome family and are so blessed with some amazing friends who are stepping up to support Rachael and Justin during this time. Mom is working on putting together a schedule of people who can help Rachael during the day with Jimmie by doing TKM, holding him, changing diapers, doing laundry or anything that's needed. Letting Rachael take a nap etc... Hopefully this will help Rachael and Justin hang onto whatever sanity they have left. And also help Rod and Kathy, they both work and since Rachael, Justin and Jimmie are living with them they are doing A LOT! But that comes with rewards. They get to live with their totally awesome, cute, miraculous, amazing grandson. (-:

God is good. This too shall pass. We'll get through this.

Please keep praying!

Love,
Amber

P.S. My mom just informed me I've started spelling Erythromycin wrong. I think I was writing the name of a different drug. ARG! Ellie please feel free to correct me on these things! (-:

Monday, August 24, 2009

Home With The Tube

After 1 week in the hospital Rachael, Justin and Jimmie are home. Home is now at Rod and Kathy's (Justin's parents) house. Apria delivered all of the stuff related to NG feeding Jimmie this afternoon. I wish I could be all excited about the fact they are out of the hospital. I wish Jimmie was better and that's why he is home, but that's not the case.

We are glad they are out of there, but the fact that Jimmie is not eating by mouth is really hard to take. Rachael is learning to get the tube in the right position, mix his meals, work the pump, flush the tube and clean everything after. She always offers him the bottle and mostly he's been refusing it.

He does seem to be in less pain then he has been and not puking today nearly as much. Maybe the Prevacid is starting to work better and maybe cutting out the Erythromycin was a good thing. And of course mom has continued TKM sessions with Jimmie and he always seems to do better after a session. We'll see... The one thing we've learned over the last 2 months is what seems to be working for Jimmie one day might not the next day. Very inconsistent, very frustrating.

Jimmie now has a nutritionist who has worked with Rachael to come up with a concoction that gives him enough calories, but is mostly breast milk. We are glad about that and are hoping it helps. They have referred Jimmie to a Gastroenterologist who will follow up on Jimmie's peristalsis issues. He still has his appoinment with the Neo on Sept. 3rd.

Jimmie's reflux is severe enough that he's exhibiting signs of Sandifer's syndrome. This is a set of physical symptoms that are basically a reaction to GERD (gastroesophegeal reflux disease).

"The classical symptoms of the syndrome are spastic torticollis and dystonia. Nodding and rotation of the head, neck extension, gurgling, writhing movements of the limbs, and severe hypotonia have also been noted."

Rachael started noticing how he whips his head side to side. and writhes. She looked it up an got pretty freaked out. She didn't at first realize that this syndrome didn't actually have a neurological component and is just a reaction to GERD. This syndrome is not life threatening, has a good prognosis and goes away when the childs reflux goes away. In her talk with the Dr. this morning she said, "so Jimmie's exhibiting signs of Sandifers..." And the Dr. goes, "yeah, we know." *sigh* My reaction, "you could have told her that so she didn't have to have her stomach in her toes, feel pukey and be crying last night about it." I was able to look it up and explain it to her so she could fall asleep. But seriously . . . .

So what now? We wait . . .We pray . . .We hope . . . Where can the medical staff go from here? They still have a ways to go with the Prevacid, but if that gets maxed to no improvement they would probably start talking surgery. The Fundo procedure. It can work. It can work well. But it can also stop working and or not work at all . . . That's the last thing we want is for Jimmie to have surgery and it not work.

We really really crave your prayers right now for our sweet Jimmie Jim Jim. The kid has been through enough. We want so badly for this to turn around. We really want him to take his bottles happily and not be puking his guts out and in pain.

I seem to be having a bit more trouble keeping my chin up about this the last few days, so forgive me if these posts are a bit pitiful. We have so much to be thankful for and God is so faithful. Please pray hard for Jimmie, but also for all of us close to him. We need to have grace!

Love,
Amber

P.S. Thank you Liz from the UK for your comment. Rach uses any info from all of you who have been there-and is grateful. She would love to speak to anyone who had a child at home on an NG. She could really use the support and experience of those that have been in the trenches. please email her at racheudaly@yahoo.com Thanks to everyone for your love, prayers and comments!

Sunday, August 23, 2009

No Improvement

Jimmie has not eaten much to speak of today by mouth. He's been puking after every meal. Rachael is VERY discouraged. She feels like nothing they are doing is working and that they could be struggling like this at home. She talked to the Dr. about leaving tomorrow. She would learn how to use the pump and Jimmie would go home with the tube. They may end up leaving. However if someone on the medical staff has any ideas to do something different for Jimmie Rachael may decide to stay.

We are interested to try oxygen, enzymes, go back to mostly breast milk or try an amino based formula in case he has allergies. If the hospital is willing to experiment with these things . . . they may stay.

The continuous feed at night is making Jimmie miserable. Rachael feels it never gives his tummy a break. The Dr. feels perhaps he should be tolerating it better and suggested that Jimmie drink a radio active isotope so they could do a lower GI to see if Jimmie has a problem with his peristalsis (the way his food moves out of his stomach and through his lower bowel). If he did have slow or weak peristalsis they would do more Erythromycin. That's not a good option. They actually took him off of that today because they are very suspicious that it is causing him a lot of tummy pain. The other thing they would do was Reglan which now comes with a HUGE warning about how it can cause neurological damage. So that drug is not an option to us. So Rachael refused the test because even if it did show some small problems she wouldn't use either drug for it.

She asked the Dr. to talk her into it if they felt it was really necessary. The Dr. said she understood Rachael's reasoning and she would let that test go for now.

So I don't know if they will stay at the hospital or go. I don't know where they will go from here with his treatment.

Please keep praying. Rachael is so exhausted she can hardly think straight. I am feeling really really badly for Justin, Rachael and Jimmie right now.

Love,
Amber

Saturday, August 22, 2009

Uncontrolled, Uncomfortable, Unhappy (But there is a silver lining!)

Today has not been a good day for Jimmie. He has had to be tube fed for all but one feeding so far as he is refusing to eat. He seems to be very uncomfortable. Rachael feels his reflux is still out of control! She is trying to be patient, but it is hard to watch Jimmie suffer. The medical staff can only move so quickly when increasing drug dosages. You have to give it time to work before you up it again. Rachael is frustrated this evening at the lack of progress.

Pray for Justin- his emotions and his stress are affecting him physically. He has a headache and a fever again, he feels sick to his stomach and he's having heart palpitations. This happened to him back when Jimmie was in the NICU too. Pray he can "peace be still". Pray "peace be still" for Rachael as well.

Here's the silver lining . . . .

Are you ready for this????????

JIMMIE WEIGHS 10lbs!!!!!!!!!!!!!!!!!

Wooooooooohhoooooooooo!!! Michelle-- your new nickname for Jimmie today (Big Jim) was perfect!

The bigger he gets the better and the sooner he grows out of his horrible reflux.

Lord please help Jimmie to heal, give his parents and the medical staff direction and wisdom in his care.

Please keep those prayers coming. Poor little Jimmie's reflux is *uncontrolled* so he is very *unhappy* and *uncomfortable* today. And so are his parents . . .

Love,
Amber

P.S. I just talked to Rachael and Jimmie settled down and peacefully took about an ounce from his bottle. Rachael said with that and learning he weighs 10lbs- she likes the little note this day ended on. So at least she's hanging on to the good. (-:

Friday, August 21, 2009

God Bless This Broken Road

Jimmie has been puking a lot today. )-: However since Rachael realized he needed a different tube and they put the bigger shorter one back in he hasn't puked his tube up. He has done pretty good taking his bottle. He's taken 70 mls a few times and isn't screaming and struggling. Of course that seems to change very quickly. He still has one more feeding this evening I think.

I'm eating my words about Dr. P. He came back in today and spent over 30 minutes talking to Rachael and Justin. He is proving to be very open minded. He even made the statement that mixing western and eastern medicine could be very helpful. He is willing to try oxygen for Jimmie. He is also open to enzyme therapy and probiotics, both of which Rachael brought up. He wants to very systematically try things. He wants to know what works and what doesn't. So - we'll see . . . there may be some experimenting happening which we are totally excited about in that context.

Dr. P. told Rachael and Justin this morning that *on paper* Jimmie looked great! He is gaining weight and very healthy. He said that he could never recommend a g-tube (surgically implanted feeding tube) for Jimmie at this point in time. He said that would be gross negligence and fodder for malpractice on his part if he did that. He said the risks of that far outweigh the benefits to Jimmie. Jimmie would have to prove over and over that he wasn't able to thrive any other way. He said that Jimmie is growing and gaining and that means eventually his LES ( lower esophageal sphincter) will mature and his terrible reflux will subside.

Amy we totally appreciate your input! I read your comment to Rachael over the phone this evening. It's nice to hear from somebody who's "been there done that" and is so straight forward.

I thought the whole discussion with Dr. P. was very encouraging, but Rachael sounded very tired and down anyway. She and Justin need a refresher. They need perspective and grace to deal with this. I think this grace has to come from Above! Lord please comfort them and give them strength. I know that Rachael and Justin are very discouraged and weary from this struggle. Rachael- of course- wants the whole thing to just go away, for there to be some magic potion to make everything all better. Unfortunately I think that the most likely outcome to this is that they keep limping along until Jimmie outgrows his issues. It's a broken road, but that doesn't mean it can't be blessed right? (-:

We are so thankful for your prayers!

Love,
Amber

Oxygen Talk

Right after I posted last night I talked to Rachael and Jimmie was refusing to eat his last bottle of the day. She was out in the hall because they were putting the feeding tube back in and she just couldn't watch him suffer again. Justin was with him . . .

It seems like every time I post an upbeat- "yeah Jimmie is doing better" post lately, I talk to Rach right after I publish it- and she's like, "Um- never mind, he's having a bad time now." Although the big picture is that yesterday- overall- was a good day. So we are thankful for that.

This morning he puked his feeding tube up AGAIN. Rach realized that after the tube got clogged yesterday they had a put a different tube in that was smaller and longer. She's thinking that's why all of the sudden it is coming up every time he pukes. So she is going to ask for the bigger shorter tube to be reinserted. That tube didn't come up every single time he had a little pukey.

As far as the food moving out of his stomach; the Doctors are not too concerned, but that is what the Erythromycin is for that they have Jimmie taking. That drug helps move the milk out of his stomach a little faster.

The Doctor yesterday listened to Rachael explain about how the oxygen had really been making a big difference with Jimmie's puking at home and that also at times it seemed to help his eating struggle too. We thought since he was satting great the Doctor would "poo poo" that, but he didn't! He said that was totally possible and that he did feel that Jimmie coming off the oxygen had something to do with all of this. He said Jimmie's body was trying regulate itself without the help of oxygen and that it's entirely possible his reflux escalated and his digestion took a hit. BUT-- he feels that Jimmie needs to aclimate. Meaning that he doesn't really want to keep rescuing him with oxygen. *sigh*

Obviously the oxygen wasn't helping enough to keep him out of the hospital, but still. My response is, "so your okay with dosing Jimmie with drugs to try to "help", but plain old God made oxygen isn't a good option??" I understand long term use of oxygen isn't safe either, but neither is long term use of those drugs! Maybe the oxygen plus the drugs would be helpful??! I was impressed the Doctor listened and acknowledged, but not so much with his reasoning.

We are sincerely hoping these drugs work. We are desperate for something to make enough difference that Jimmie won't need to be tube fed. I can tell you though that once Rach gets back home she won't be throwing the oxygen out. She's hoping Jimmie's Pedi Dr. S. will work with her on that. The other thing to note is that these Doctors taking care of Jimmie are Special Care Pediatric Doctors they are not Neonatologists. Jimmie still has his appointment Sept. 3rd to see the Neo.

Disclaimer: I know I'm not a Doctor and I'm sincerely not trying to be disrespectful. End of disclaimer . . . (-:

I'll post another update tonight to let you all know how the day goes...

Eat Jimmie eat! Go Jimmie go!

Love,
Amber

P.S. Thank you to Chris, Pam E, Pam L and Michelle for doing Jimmie duty while Rach gets out of the hospital or eats in peace or takes a shower. We are grateful for the help. Although who wouldn't want to sit and hold our little miracle!?? He's so awesome! (-:

Thursday, August 20, 2009

Eating, Tube Trauma, Names

Today has been encouraging! Jimmie has 3 times taken over 70mls by mouth! Please Lord- let this continue.

He has had a bad time with his feeding tube though, poor little guy. They put his morning dose of Prevacid in his tube and it clogged it up. They tried to unclog it by putting a little Coke in there! WHAT?? I know . . . I guess Coke eats through substances. That didn't work so they ended up having to take his tube out.

Putting that tube in is always very traumatic for Jimmie. It puts him in to hysterics. Jimmie is so brave so you know when he is hysterical that he's REALLY upset. The feeding tube going in his nose was most likely *one* of the contributing factors to his "crash and bleed" in the NICU when he was just over a month old. That has definitely crossed our minds more than once. Rachael advised them not to even try in his right nostril because of previous experience with that side in the NICU.

Today as they prepared to put it back in after they unclogged it Rachael said, "Alright lets try the right side to give his left side a break, but if you feel any resistance at all stop". They did feel resistance so they stopped pulled it back out and put it into his left side. The first time it didn't go in properly and came out of his mouth. Suffice it to say- not good times for our little "Jimmie Jim Jim" (that's what my mom calls him.) Sadly this afternoon he puked and the tube came up and out of his mouth so they had to take it out again! They are holding off putting it back because he ate so well at his last feeding he didn't have to be supplemented. They may have to torture him again before bed though if the Doctor wants him to stay on that continuous feed tonight.

All that to say- please keep praying he eats well. We would hate for the trials of his feeding tube to continue at home. To put it bluntly, that would SUCK!

The doctor did say that if Jimmie starts showing that he can increase his volume they will keep him in the hospital longer to make sure he can indeed go home without the tube. If he is inconsistent and doesn't do well taking enough by mouth they will send him home maybe in a couple of days with the NG tube. So as weird as it sounds pray that he'll be in the hospital longer proving he can eat enough.

But also continue to pray for his protection from anything infectious he may come into contact with at the hospital. It doesn't do your heart good to hear "the kid down the hall with Pertussis" come out of a nurses mouth. There are only a few kids being taken care of on Jimmie's floor and I've seen "contact precaution" signs on two doors. It is so not cool that Jimmie has to hang out in a place for sick kids when he is perfectly healthy.

So Jimmie has a few nicknames. As I said my mom calls him "Jimmie Jim Jim" inspired by Muppet Treasure Island I think. My brother- Jimmie's uncle Evan calls him "Little Reflux". 0-: Rachael calls him "Booba". I call him "Little Man" . . . And technically "Jimmie" is a nickname as his legal name is "James".

Speaking of which Rachael and Justin are *almost* regretting that scenario. The whole- his name is "James", but call him "Jimmie" thing. In the NICU after he was born Rachael and Justin introduced him to the NICU as "Jimmie". But then they filled out his insurance forms as "James". The NICU then submited their portion of his paper work as "Jimmie". And the confusion ensued. For a while their insurance company thought Rachael and Justin had twins- "James" and "Jimmie". They were trying to pay for 2 babies among other things. After many phone calls Rach and Justin thought it was sorted out until the Children's Mercy Financial Department called and said "James's" insurance was inactive! WHAT??? So Justin calls and the insurance company says make sure you are giving them Rachael's number plus -03. Justin's 01 Rachael is 02 and James is 03. Makes sense- so Rach looked at Jimmie's card and realized it has 04 on it, as if he's their 2nd insured child!!! So they'll be getting a new card for Jimmie under James with an 03 and hopefully this will be sorted out once and for all. Although we are not holding our breath because when they first arrived at Children's Dr. S. had pre-admitted them. Admissions said, "Um-- we don't have a James Gravitt." So Rach said, "Oh you have Jimmie Gravitt?" They said, "Nope, but we have a "JAMIE Gravitt." Oh FOR CRYING OUT LOUD! And laughing out loud if you have a sense of humor.

Go Jimmie go!!!

Thank you for your prayers! Keep them coming!

Love,
Amber

Wednesday, August 19, 2009

GI Test Results

The good news is Jimmie's GI test showed no structural abnormalities. However- as expected, it did show severe reflux. No structural damage has been done yet, but there may be psychological damage to Jimmie. The last 2 feedings he has absolutely refused to take anything by mouth. We don't know if maybe he's figured out that his belly will be filled (through the tube) if he doesn't take the bottle or if things have just continued to progress in his aversion to eating.

The medical staff thinks that sensory issues and aversions to eating are just around the corner if not present already because of the major discomfort he has been experiencing. They are trying to get this reflux under control. They have doubled his Prevacid intake and they have started him on Erythromycin which is supposed to move the milk out of his stomach quicker.

Right now we still don't know how long he'll be in the hospital and what the outcome will be. There are 2 posibilities we'd rather NOT see happen.

1. Jimmie having to go home with an NG tube. Hopefully if this is the case that need would not progress to a surgery and a more permenant way to feed him.

2. Surgery to prevent Reflux. This surgery is called a Fundoplication. Here is an explanation of that procedure: "During fundoplication surgery, the upper curve of the stomach (the fundus) is wrapped around the esophagus and sewn into place so that the lower portion of the esophagus passes through a small tunnel of stomach muscle. This surgery strengthens the valve between the esophagus and stomach (lower esophageal sphincter), which stops acid from backing up into the esophagus as easily. This allows the esophagus to heal."

And actually a 3rd worse possibility would be combining both of the above. Surgery for a permenant feeding tube and a Fundo Procedure.

What we would love to have happen and what we want you all to pray for is that Jimmie's Reflux can be tamed and that he'll start eating really well by mouth. We'd love for him to go home with no NG and be taking a sufficient amount by mouth. I have to say though that is starting to seem like it's asking a lot. We are discouraged today at how he is eating. Things have only gotten worse with Jimmie taking his feeds by mouth since he's been hospitalized. Things have definitely gotten better with his body though. He's gaining weight and is fully hydrated. And it is much less stressful for Rachael to know his little belly will be fed whether he takes his bottle or not.

Just keep praying for our little man. Pray that he would be brave and take his bottle!

Love,
Amber

Upper GI Is Happening

Jimmie is having an upper GI right now. It was supposed to start at 10am. Keep him in your prayers today. We don't know how long to expect it to last, but I think the results will be discussed today.

I'll update later and maybe we'll know more . . .

Here are some cute videos taken last week.

Jimmie rolling over!

video

And Jimmie moving and grooving with his daddy.
video

Love,
Amber

Tuesday, August 18, 2009

No Answers Yet

Jimmie is doing good. He was acting more himself today smiling and cooing. I went to visit this morning and took these pictures. He was so so so so CUTE!!!





















They have Jimmie on a continuous feed at night. He is getting about 25 to 30 mls an hour. Consequently he went to sleep last night around 10pm and didn't wake up until 5am! They are doing this to help his stomach stretch out a bit. And also because they feel he is 2 1/2 pounds underweight. He works really hard when he eats and burns a lot of calories during his feeds. And doesn't take in enough.

They are a bit concerned that he is not moving the food out of his stomach at a normal speed. Meaning that he still has too much milk in his stomach when it's time for the next feed. Rachael will ask more questions about that tomorrow.

He is taking his feeds by mouth during the day. They very quickly have adjusted his amounts down from 116mls to 86mls. During the day Rach feeds him and whatever he does not take by mouth they put in his tube. He's been puking a bit more than he was at home. It makes sense though as he is taking in much more volume. AND they don't have him on oxygen right now because he's satting very well. We had found the oxygen was helping quite a bit with the puking. Rachael will speak with them about this too.

We think that the Doctor will probably order and Upper GI to be done on Jimmie. That is where he drinks the contrast substance "barium" and they take a series of x-ray pictures of his upper GI tract. This will help to rule out any structural abnormalities and could help (hopefully) diagnose his issue. Right now everyones best guess has been severe reflux. But they will be ruling other things out.

So basically- we don't really know anything new yet.

Justin and Rachael are doing fairly well staying positive and trying to act and keep things as normal as possible for Jimmie. I think they are experiencing a lot of initial relief that Jimmie's care is being taken over by the medical staff and that hopefully we will get some answers and hopefully more direction in Jimmie's treatment.

Jimmie was cooing and talking to Kathy today when she came by on her lunch break. Rachael said he was being so serious while he was talking to her- like he was telling her all about everything. (-:

I went to visit again this evening with my kiddos. They were anxious to see that Jimmie was ok.

The medical staff has also been very encouraging to Rachael and Justin about Jimmie. One nurse went on and ON about how she had looked through his medical history and how she could NOT BELIEVE he was a 24 weeker. She said he was unlike any 24 weeker she had EVER seen. She told Rachael, "Honey- you are SO VERY blessed!" "Your child is amazing!" Everyone has been marveling at how beautiful and engaging he is. How ahead of the game he is neurologically. This is all very good for Rachael and Justin to hear and it does lift their spirits quite a bit.

Keep praying for wisdom and answers for our sweet Jimmie. And for grace for Rachael and Justin!

Love,
Amber

Monday, August 17, 2009

Brave Boy

Jimmie was admitted too late in the day today for them to run any major tests. The plan for now is to watch Rachael bottle feed him and then supplement the rest of his meal in a feeding tube. When they first put the feeding tube in earlier today Jimmie was pretty upset about it. Rachael said he screamed and screamed and it took 2 tries to get it in right.

The medical staff thinks Jimmie should be taking 116 mls. After a failed feeding they put that all in through his tube even though Rachael warned them that would not be a good idea. He ended up having a horrific puke. Puking everything including the tube. Now they are heeding Rachael and dripping in smaller amounts over an hour.

They may end up running some more tests tomorrow including a swallow test. Please pray for wisdom as Rachael and Justin advocate for Jimmie and make decisions.

Jimmie is not an infant anymore. He is very aware of his surroundings. In the last couple of days when someone talks to him while he's in Rachael's arms he plays shy and hides his face in her neck. So cute!!! But what this means is that he is very sad right now. It is very hard to see him back in the hospital. Rachael said he is being very brave, but she can see that he is very aware and affected by his circumstances. This is breaking our hearts.

Please pray this hospital stay would be effective and over quickly. Perhaps you all could pass the word along to your people to send up extra prayers right now for Jimmie and the whole family.

I took this picture the other day. I have some fun videos to upload, but I just don't have the heart tonight. Maybe tomorrow. This picture is more true to how we are all feeling right now anyway. )-:



Sheesh. I'm sorry this post is so "down". I think I can hear the violins in the distance. (-: I'm *almost* chuckling.

Lord please draw near to us with Your peace, grace and comfort . . .

Love,
Amber

Weary (Jimmie Is Being Admitted)

Edited to add- Jimmie is being admitted to Children's Mercy South. They will put him on oxygen and monitors and observe his eating. Pray for wisdom and that Jimmie's problem will be clearly revealed.

Love,
Amber

Earlier post:

Well- I don't know how Justin is doing. I assume better, but the focus was on Jimmie when Rach and I talked a little bit ago. Jimmie had a bad day yesterday. He only took 10 ounces, struggled at every feed, had only 4 wet diapers and his pee started smelling more concentrated by evening. When I talked to her last she was waiting to see what Dr. S. wanted to do.

The only thing left to do really- is admit him at Children's Mercy. His Neo appointment with them is Sept. 3rd. I did spend about 45 minutes on the phone with Children's this morning trying to get him in sooner. The problem is Jimmie needs a new patient time slot which is much longer than the regular time slot. We could call every day, but people rarely cancel their first appointment they have (probably) waited forever for.

If Jimmie does better throughout the day and he stays out of danger from dehydration. We can keep limping along. However if he does not do better today dehydration will become a real concern. So pray! We'd really like him to stay out of the hospital- obviously.

The nurse I talked to from the Children's Mercy Neo clinic this morning was great. She spent a good 20 minutes speaking with me. She asked me 1/2 way through our conversation if I was a nurse. (-: I said, "If you think that- wait until you talk to my sister!" Justin seriously has offered to put both me and Rachael through nursing school.

The *real* nurse said it sounds like bad reflux that is not under control. And she suspects "esophagitis". That is an inflammation of the esophagus that can cause pain and swelling that makes it hard to swallow. After talking to her it sounded like they may recommend a higher dose of Prevacid, more oxygen... I'm not sure if they will/would put him on some sort of anti-inflammatory . . . Most of this is conjecture as she could not actually advise us to do anything without seeing him. The ONLY thing she actually advised was to call Dr. S. I laughed when she asked if Rach kept a feeding log and a puke log and a bowel movement log and a urine log etc... I laugh because the answer is- YES! Rachael meticulously logs everything! The other thing she said is that if this struggle goes on for too long she would be concerned that Jimmie could develop an aversion to eating.

Rachael and Justin have made a big decision to move from Odessa to Lee's Summit and live with Justin's parents (Rod and Kathy) for a while. They will move today. Rachael is grateful for a place to stay with family that is closer to help. Help in the form of family and friends and help - as in Dr. S and Children's Mercy. Though she is very grateful she is also devastated. Sad that things have progressed to the point that she and Justin do not feel they can take care of Jimmie in their own home by themselves anymore.

Pray for them today! Pray for wisdom about Jimmie's care. Pray that he'll eat enough to stay out of the hospital. Pray for Rachael's heart. She's weary . . .

Love,
Amber

Saturday, August 15, 2009

Rolling With The Punches

We are wondering if perhaps the Prevacid is making a difference . . . The last few days Jimmie has struggled much less with his feeds. He still only ended up taking 13 ounces yesterday. We are also wondering if the Prevacid is causing him to eat less. It does have more side effects than the Zantac. However if he can still gain weight, less struggle is preferable! Rachael is cautiously encouraged. (-: From last Friday to this Friday Jimmie gained 7 ounces which is good! It's only been the last few days that he's been taking the amounts less than 15 ounces so we'll see how he does this week on his weight gain. I have hope it'll still be acceptable.

We have been marveling at how the last 2 months have been more of a rollercoaster ride for Rachael and Justin then the NICU was. It actually more closely mirrors the terrible ups and downs during the month Rach was on bedrest. I'm thinking it's in part an accumulative effect of everything on their emotions. And also just a fatigue and exhaustion of the fight. And I do know that what Rachael has perceived as the looming threat of going back to the hospital has been very hard for her to bear up under.

Jimmie is doing amazing in all other areas. Rachael said he SAT UP yesterday. He was laying cradled in Justin's arms and he popped up all on his own to a sitting position. He also is purposely rolling over! He is so engaging and expressive as well. He's getting very close to giggling.

Rachael did better yesterday rolling with the punches and not getting sucked in to the hour by hour. This is huge for her sanity! Pray she has the grace to stay in that happier place.

Another matter for prayer- Justin came home from the Fire Station last night with a fever of 101! He felt pretty rough all night. He's doing a bit better this morning, but it's looking viral. Pray for Justin of course, but send some extra prayers for Jimmie that he would stay healthy. Justin slept in a separate room from Rach and Jimmie last night as they are of course trying to keep Justin and Jimmie apart. Also pray Rach stays healthy too!

Thank you so much for all of your comments and prayers!

Love,
Amber

P.S. Also just wanted to say, "thank you!" to Chris and Michelle for taking a shift and being with Rach and Jimmie this week.

Friday, August 14, 2009

Jimmie We Need You To Eat

Eat Jimmie eat! Eat eat eat eat. Come on little man you HAVE TO EAT!!!! The past few days have been better in that Jimmie has been taking his feedings without as much struggle. However he is taking still less. He should be around 18 to 20 ounces in a 24 hour period. He was averaging 15 which was getting him by calorie wise with the move to formula. Now though-- the past 2 days, he's only taken 12 ounces.

Rachael told me yesterday she feels like hospitalization is inevitable and she just wants to get it over with. I'm hopeful that won't happen, but Jimmie does need to turn this around! Justin is sad and worried as well.

Children's Mercy nutrition is going to see Jimmie next week, but the Neo's can't see him until Sept. 6th. Justin and Rachael are frustrated by that.

Please please please keep praying for Justin, Rachael and Jimmie. This is a really stressful time for them.

Thank you so much for all of your comments under the last post! You all have no idea how much the words of encouragement and ideas/advice lift us up.

Love,
Amber

P.S. Allison asked a question in the comments and I never know whether I should respond to questions under comments or with the blog. Is there a blog etiquette I should know about? Anyway- I answered under the comments. (-:

Tuesday, August 11, 2009

Dear Jimmie- Happy 6 Month Birthday

Dear Jimmie,

This is a special day! You are 1/2 a year old! Happy 6 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 today!


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















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












You have gained 28 ounces. You are 9lbs 6oz.

You have grown 3 1/4 inches in length! You are 23 3/4 inches long!

Your head circumference has increased by 1/2 of an inch! Your head is 15 inches around.

Your eating has become a major issue. You struggle so much. You act like it hurts or that it's hard to swallow. You fight so hard to drink even an ounce sometimes. Your momma also fights for you to eat. She tries so hard to be patient and love on you even though it is very discouraging and frustrating for her. She is doing a great job helping you!! She has switched you over to all formula now with some breast milk mixed in. That has really helped you gain weight and grow more this month than last month. We know now you are at least getting 24 calories. You are averaging about 15 ounces a day and at least 1/2 of those ounces are hard fought for. You have an appointment with the Neo's at Children's next month for these issues. You are also on Zantac, but your mommy is going to give the Prevacid a try starting tomorrow.

Your lungs are still doing great. However you did go back on oxygen this month. God helped your ma and your mommy to see how you still needed it. You had been puking so badly you were micro-aspirating and retracting a bit. The O2 has helped you a bit in your struggle to eat and your scary puking you were experiencing is almost non-existent. We are so grateful for the benefits of the O2. Your mommy keeps you on it an average of 14 hours in a 24 hour time period. You are an 1/8 of liter all night long and then during feeds all day.

You have 94 followers on your blog! (4 more than last time) And your Faithfulness Video Montage has been viewed 3,412 times! That's 566 views this month! Your "Jimmie's Wonderful World" montage has been viewed 456 times. That's 64 more than last month. Your blog has been viewed 8,157 times this month for a total of 28,147 hits! You have a lot of very cool people who love to check on your progress Jimmie.

Your momma has had her own struggles this month as well. She has just been overwhelmed, exhausted, frustrated and sad for your struggles Jimmie. She is working hard to feel better and trying to see the positive. I am constantly amazed at your mommy's strength and courage. She is so resourceful and dedicated to give you the absolute best life possible. She loves watching you move and grove under your play gym and you can completely melt her with your coo's and your smiles. Despite the struggles you and your mommy and daddy are having you all love each other so much and are some of the strongest people I know!

You have been out and about some this month, but it's harder for your mommy to deal with your eating issues away from home. You had another trip down to the lake, but it was pretty much a disaster which might be funny someday . . . a day very far away from now. Far from you and your momma's current struggles. (-:


Jimmie, despite your struggle to eat you are thriving. I am so sorry to see how uncomfortable you are when you eat. You try so hard though Jimmie. You have always been and you remain such a fighter. The most inspiring and amazing thing about you is that in your young life you have had to fight to breathe and now you are fighting to eat, but you always have an attitude of grace and joy. As soon as the eating struggle is done you have a smile back on your face and great interest in the world around you.




You are one of the happiest babies I have ever known. You are so excited about life. That has taught me the greatest lesson Jimmie. To not feel sorry for myself, to not be bitter about hardships, to have joy in just living! You- who started life with a 50% chance of not making it at all and a very high chance of being significantly disabled; if a child such as you can be so happy and so peaceful, so brave and so eager that proves to me what a blessing life is no matter what! And it also shows me how faithful our Holy Father is, how He has been with you and in you every step of the way. Thank you Jimmie for being my little miracle. I am so grateful and proud to be your Auntie.

I will love you forever!
Auntie Amber