Thursday, July 30, 2009

A Cry For Help/Prayer

Well last evening's blog was based on a conversation I had with Rach at about noon yesterday. Right after I posted it, I found out that things had been going downhill all day. The last 24 hours Jimmie has not been eating well at all and his puking has increased again. This morning after an hour of screaming and struggling Rachael got him to take 80mls after which he puked, badly- 3 times. He must of aspirated because he was retracting a bit afterward and had wet sounding cough.

My mom is in Odessa now with Jimmie. Rachael has gone to get the Prevacid and the Bethanecol. Jimmie doesn't seem to be in distress now so that's good. Hopefully these drugs will make a HUGE difference. Pray that's the case and that Jimmie doesn't suffer with any side effects.

And please pray for Rachael. The extreme struggle to get Jimmie to eat and keep him from puking along with pumping, worry, lack of sleep and hormones has really gotten to her. She is sad, angry, depressed and totally understandably exhausted. She's having a really hard time letting go of not being able to breastfeed. She's sad for Jimmie because he wants so badly to be on his back kicking and grooving under his play gym, but everytime she lets him do that he refluxes. If she lets him move free at all he suffers for it. The disapointment and grief that Jimmie was born so early is FINALLY really hitting her. And though she is grateful beyond words at how alive and well he is- she is still very sad. In just 10 months Rachael and Justin lost their firstborn Gracie and then of course Jimmie was born into very dire and traumatic circumstances.

We have decided she needs some intervention in the form of MAJOR help with Jimmie. We are working on a schedule that will include someone being there for Rachael every day. Thankfully this is our last day of dance classes for the summer so I will be able to help a lot. Rachael tends to say she's fine and try and struggle through, but that's not working for her right now- she's falling apart and it's not pretty. Justin needs prayer too because he's trying to work and pay the bills, deal with Jimmie's needs and now Rachael is really needing to be dealt with as well. He is at the end of his rope too. Lots of stress. Anyway- this is sort of a cry for help. And the way you all can help- is pray! Pray that Rachael and Justin can face and deal with the disapointment and hurt over this whole traumatic thing. Pray that God meets them and Rachael can have sweet comfort and communion with Him. Pray that they can have a Holy perspective.

This emotional and psychological crisis has been building for a while with Rachael and since we have shared this journey thus far I want to try to keep being as honest as possible. I know there are many of you who read this blog that have gone through something similar and can relate. And there are also many of you - family and friends who love Rachael, Justin and Jimmie and will intercede for them.

My Dad prayed this scripture for them last night, "...but they who wait on the Lord shall renew their strength, they shall mount up with wings like eagles, they shall run and not be weary, they shall walk and not faint." Isa. 40:31

We are so grateful for you all- our warriors!

Love,
Amber

Wednesday, July 29, 2009

Amazing Little Man

Well-- things are going okay. Jimmie is not doing near as much of the "scary puking". And "no" Rachael has not started him on the Bethanecol yet. She and Dr. S. discussed it and Jimmie has a check up in a week. So they will continue feeding him less (letting Jimmie say when he is done) and keep dosing him 3 times a day with Zantac. At his appointment they will assess his weight gain and determine if this is the right course for Jimmie. Hopefully he'll gain a respectable amount.

Sometimes Rachael can barely get an ounce down him before he's done. And most feedings are still hour long, fussy (sometimes screaming), back arching ordeals! Followed by another hour of handling Jimmie like a china doll, trying to keep him from puking. He seems to be breathing very easy though and Rach has not noticed anymore retractions so that's an answer to prayer!

Except for feeding time Jimmie is an amazingly good baby. Despite everything he's been through, he's peaceful, happy and easily consoled- even amidst his horrible reflux. He is such a fighter; An amazing little boy!

Thank you for your prayers!

Love,
Amber

Monday, July 27, 2009

Pouts And Smiles- At Least He's Cute

Jimmie is doing better as far as the scary puking is concerned. He's had only 1 scary puke since Friday. I had just walked in the door at Rachael and Justin's when it happened- Saturday evening. Justin was lying on the couch not feeling well and Rachael had her hands in raw hamburger meat. She yelled, "grab him and turn him on his side Amber!" I ran over and picked him up. Unfortunately I didn't realize he was gripping the side of his play gym really hard. When I grabbed him up he kept ahold of it and it smacked into his head. So while he was puking and choking he also got whacked in the head. )-: Suffice it to say Jimmie was pretty mad about the whole thing. He didn't seem to have aspirated badly. I thought I noticed a minute or two of retractions a bit later, but overall he seemed fine.

He didn't really puke at all yesterday so that's encouraging. And this is without the Bethanecol. Rachael's pharmacy couldn't get it in until today. Rachael may hold off on that drug since he does seem a bit improved with his 3 doses of Zantac.

The other thing Rachael is doing different is feeding him less. She's not fighting with him to take more. She's just letting Jimmie dictate his amounts. At times he'll only take 30mls/1 ounce. And that's still with lots of screaming and arching. The Pediatrician came up with a smaller number than the Neonate for Jimmie's minimum to grow on. The Neonate told Rach he should "at least" be taking 90mls. Dr. S. says a little over 70mls on average should be fine. So Rachael is going to try this for a week or two. The hope is that Jimmie does grow sufficiently with an average of a little over 2 ounces every 3 hours.

We took this video Saturday evening. He was watching "Baby Einstein" in his bouncy seat. He pouted when the puppet dogs left the screen (those are his favorite). Then he looked over at me and just smiled and smiled. He just melts me! As Rachael says, "at least he's cute!" (-:

video

Love,
Amber

P.S. those of you that follow Mckmama- please be on your knees in prayer for Stellan. He is back in the hospital with SVT and is extremely critical.

Friday, July 24, 2009

Crazy Time

Rachael took Jimmie in to see his Pediatrician Dr. S this morning. Justin is on his 24 hour shift and Rachael is completely overwhelmed and feeling "crazy"! So she came to my house to feed Jimmie beforehand and I ended up going with her because she was afraid he would throw up in the car. He didn't throw up in the car, he did one better. He performed magnificently for Dr. S. and threw up at least 4 times in front of him. Two of which were the horrible ones where his eyes bugged out, his head turned red while the rest of him went white and his arms and legs flailed crazily. Then the puke spurted out of his nose and mouth and when he could finally breathe- he screamed.

Dr. S. looked him over and except for the horrible refluxing and puking he looks great! He weighs 8 pounds 10 ounces! Doing all bottles with fortifier has really given Jimmie a much needed boost in his weight gain. His lungs sounded fine and most importantly he was satting in the mid to upper 90's.

However Dr. S. is concerned. He said what he saw Jimmie doing was starting to get scary. He's not turning blue, but Dr. S. said if you had him on monitors you would see his heart rate drop way down. He's definitely vegeling. Also Dr. S. thinks that he may be "micro-aspirating" and that is what is causing the retractions Rachael has noticed off and on in his breathing. This is NOT a scenario that should continue.

Dr. S. is pretty conservative and does not typically like to treat reflux. However he agreed it is definitely time to get aggressive with Jimmie. Rachael did start him on the Zantac yesterday though he only held down one dose. The new plan is he'll be dosed with Zantac 3 times a day and Rachael may add another drug the Dr. prescribed called Bethanechol that is supposed to move the milk through his GI track to his stomach faster. The Dr. also prescribed Prevacid to replace the Zantac if we are not seeing good results with that. From what we understand Prevacid is a more expensive and a more aggressive antacid than Zantac. Ellie- (our pharmasist in the family) please feel free to share what you know about these drugs. (-:

The cause of Jimmie's reflux is his prematurity and more specifically an inmature valve that doesn't function as it should. The antacid doesn't treat the reflux it just takes the burn (acid) out of it. The Bethanechol is what is supposed to help keep the Reflux from happening.

Rachael's facebook status posted last night says, "Rachael is feeling crazy!" Let me elaborate: Crazy in a bad way-- like insane. She has been filled with anxiety and fear about Jimmie's health and especially his breathing. She dreads the horrible traumatic feeding times that come every three hours around the clock. She feels like she should never put Jimmie down because he's much less likely to puke if he's held upright all the time. She also has to pump milk for him every 4 hours. Justin has to work. He helps as much as he can and is also completely tired of the struggle. We are all gonna help them as much as we can, but the burden is pretty big for them right now. They both remind each other they are dealing with this because Jimmie did survive his extreme prematurity. They are both unspeakably thankful for that, but they still fear for his life and his prognosis at times. Rachael has said if she were not so vigilant with her symptoms at 20 weeks (they could have easily been written off as not serious) she would have lost Jimmie. So she feels like she has to be extremely vigilant about every little thing. Pray that she can relax and trust God to guide her.

The truth is Jimmie is doing great! He is breathing without support, neurologically he is on track, he does take his feeds by mouth. The big picture is very encouraging, but what Rachael and Justin are going through right now is extremely exhausting and difficult. Rachael broke down this morning and just sobbed for Jimmie. He is such a fighter and he works so hard to eat and then to see him struggling and in pain is so hard.

Please pray that these drugs work! Dr. S. is pretty confident they will. If they don't, much more serious and invasive measures would have to be discussed. Also pray that all of the TKM Rachael is doing will help the reflux and also help with any side effects from the drugs.

Thank you for fighting for Jimmie, Rachael and Justin.

Love,
Amber

Thursday, July 23, 2009

Good, Bad, Up, Down

So I'll start with the good. First of all my friend Dave had the entire 4 month post, pictures and text! Yeah!!! I'm so happy and grateful. Someone else (Emily) had the text as well. Thank you both!

Here is a totally cute video- as promised- of our little Jimmie!
video

Tuesday was a great day for Jimmie. He ate 4 ounces at almost every feeding with only a little struggle. He held most of it down too. He was happy and content all day and weighed 8 pounds 12 ounces when Rachael put him on the scale.

Here's the bad . . .

Yesterday and today (so far) have been terrible. He's taken 3 ounces at his feeds, but with lots of screaming, arching his back and shaking his head. He's throwing it up a lot and while I was on the phone with Rach a little bit ago he refluxed and screamed in pain. It made my eyes fill up with tears just to hear him crying like that. Rachael has also noticed him retracting a little every once in a while. That's where his chest sinks in with his inhale.

So Rachael just got of the phone with both my mom and Jimmie's Pediatrician. My mom gave Rachael a list of TKM sequences that Rachael is going to do all day long. She'll stay home from work and just focus on helping her baby. Dr. S is prescribing Jimmie the drug Zantac to see if that helps with the reflux. Rachael really has not wanted to start Jimmie on a drug, but she may end up trying it because Jimmie is obviously extremely uncomfortable. It's unbearable for her to watch him struggling, working so hard to eat and then suffering and in pain. I'll keep you all updated on what she ends up doing with the Zantac.

Just please pray for sweet little Jimmie and his mommy and daddy. He has ups and downs and they've just seemed so extreme the last few days. When Jimmie is having a good day Rachael is very happy and feeling "up". When he's having a bad day she is sad, discouraged and feeling very "down". It is just really hard right now. And it's also confusing because it is so "up and down" with no rhyme or reason.

Thank you for continuing to fight for Jimmie!

Love,
Amber

Wednesday, July 22, 2009

OOPS! ARG!

So a week or so ago when I was making Jimmie's 5th month Summary post I stupidly completely lost his 4th month post. )-: I do have a friend who is helping back up the blog, but that post wasn't backed up. We've tried searching our cache and various other recovery methods with no success. I can mostly recreate it, but it's a bummer. I thought I'd just throw this out there in case anybody has that post saved or has any bright ideas on how to get it back. Anyone??? (-:

Some fun Jimmie video clips and an update coming later!

Love,
Amber

Sunday, July 19, 2009

Feeding Prayers

Jimmie is doing alright. Feeding does remain a constant issue. He should be taking at LEAST 90mls. It seems that about 1/2 his feedings he only takes 70 or 80mls, but then the other 1/2 he'll take 100 to 110mls. However he is much more likely to have a significant puke when he eats the larger amounts. It just gushes out. Rachael keeps a full sized towel surrounding them during his feedings. Sometimes it comes out of his nose too and those pukes are not fun. He struggles for a few seconds to breathe and Rachael suctions his nose to help him out. We are hoping that the average amount of milk that stays in his belly is sufficient. She is adding fortifier too- so hopefully that counts for a little more. Usually "at least" once in a 24 hour period he has a really bad feeding where Rachael says he screams and fusses frantically the whole time. She says it looks like she's torturing him. She always fights for him to eat. She does not feel Jimmie can afford to miss any feedings. Lets pray some major "feeding prayers" for little Jimmie. Eat Jimmie eat! (-:

Rachael has been having a hard to time getting a consistent reading that makes sense on her baby scale so we don't know what he weighs. We are hoping for 8 pounds or more. Rach is gonna replace the batteries in the scale and hopefully that will fix it. She may also end up taking him to his Pediatrician- Dr. S. this week for a weight check.

His small size and his feeding issues definitely remain his apparent issues from his extreme prematurity. Those two issues obviously are connected. Even when you adjust his age he is still very small. He'll be 2 months old adjusted age in about a week. Can any of you preemie moms offer some encouragement about his weight? What did your preemies weigh at 2 months?(adjusted age)

Can you possibly get any cuter than this though??? I think NOT!



As Cole says, "I just can't stand it! Jimmie is way too cute!!!"










Thank you so much for your prayers!

Love,
Amber

Wednesday, July 15, 2009

Nap Not

Jimmie is eating well overall. He has been taking anywhere from 80 to 110mls from the bottle. 30mls = 1 ounce and he is supposed to be drinking between 3 and 4 ounces. Sometimes it's a struggle, sometimes it's on the lower side and sometimes he pukes afterwards- but we'll take it! One time a few days ago it had only been 2 hours since his last feed and he was acting like he wanted to eat again so Rach laid down in bed with him and he breastfed on both sides! Later this week Rachael may try and start phasing the breastfeeding back in for his nighttime feedings. Bottles at night are so much more work than the breast.

Rach checked in on Jimmie during his nap time the other day and this is what she found:




(-: What a cutie! He's cooing and smiling quite a bit now too! Go Jimmie go! We love you.

Thank you for your prayers!

Love,
Amber

Saturday, July 11, 2009

Dear Jimmie- Happy 5 month Birthday

Dear Jimmie,

Happy 5 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!


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 15 ounces. You are 7lbs 9oz.

You have grown a 1/2 inch in length! You are 20 1/2 inches long!

Your head circumference has increased by 3/4 of an inch! Your head is 14 and 1/2 inches around.

You lungs are really amazing Jimmie! You are completely off all oxygen and monitors. We are so thankful for the breath of life you have had from the very beginning. Your lungs are phenomenal for a 24 weeker!

You have had a struggle this month with your eating. We are not sure what caused it or why, but you have seemed very uncomfortable when you are trying to breastfeed. You arch your back and scream and often suck for just a few minutes and then refuse any more. Because of this you have fallen off your growth curve and not gained weight like you should have. Your mommy has had many tears and fears for you, but she is keeping the faith and has found that taking a bottle is much less stressful for you. She is also able to add fortifier to your bottles and is working very hard and pumping fresh breast milk for every bottle you take. We are hoping and praying that you will start fattening up and be able to go back to the breast. You are such a fighter Jimmie. You are truly small, but mighty. I'm hoping to be able to say you are BIG and mighty someday.

You have 90 followers on your blog! (2 more than last time) And your Faithfulness Video Montage has been viewed 2,846 times! That's 527 views this month! Your "Jimmie's Wonderful World" montage has been viewed 392 times. That's 100 more than last month. Your blog has been viewed 6,614 times this month for a total of 19,990 hits! You have a lot of very cool people who love to check on your progress Jimmie.

You have gotten to get out and about a little more this month. You've visited Grandpa and Grandma Gravitt's after church one Sunday and your Great Uncle Kevin and Aunt Karen were there as well as Grandma Paula. Unfortunately your mom suffered a breast infection this month and needed lots of help so you spent a few nights at Grandpa and Grandma Gravitts. Your Great Grandma Paula was staying there too and got to have a lot of snuggle time with you.


You came to my house on Father's Day and spent the afternoon! Pa and Ma, Uncle Eric and (soon to be Aunt)Rachel, Evan and Nate, Cole, McKenna and Uncle David were all there too.





You also took your first stroller ride from my house down to Ma's!



Last night you visited your Great Aunt Sue. Grandpa and Grandma Gravitt were there too!

Grandma Gravitt loves you so much!


You also took your first trip to the Lake on the 4th of July!



You had a visit from the Best family and your cousins Cole and Mckenna. You seemed to like all of the kids and you sat like a big boy when we posed you all together on the couch.

You have started making some really funny faces this month as well! I got these hilarious pictures one day when I came to your house to visit.


This one reminds me so much of your daddy!


Jimmie I am so proud of you! Even though you have had some struggles and some pain this month with your eating you have been so brave and you try so hard! We are so grateful to God that you are taking the bottle well now and we are hopeful that next month you will have gained some major chunky monkey points! Your mommy loves you so much and is fighting for you the best she can. In order to help you eat like you need to- she gives you fresh breast milk and lets you take it from a bottle slowly over 30 or 40 minutes burping you often. Then she hold you upright carefully in her arms for another 30 or 40 minutes or else you'll puke a lot of your fought for milk. Then when she can finally put you down she spends 20 minutes pumping for your next feeding and then has about 30 or 40 minutes of free time before it's time to start all over again! She does this with a grateful and happy heart. All she wants is for you to be healthy, happy and strong!



I am so happy to finally be able to hold you and actually kiss your soft baby cheeks and tickle you and cuddle you close. You have such beautiful expressive eyes and I'm so happy they are healthy and that you can see your wonderful world. I know you will keep fighting like you always do Jimmie. God continues to bless you my little mighty hero!

I will love you forever!
Auntie Amber

Wednesday, July 8, 2009

Jimmies feeding issues!

Hi all this is Rachael! yeah I know I really exist.
So we decided to just do bottles for now. We went to the Neo appointment today (Amber will post about this later) Jimmie has fallen off his growth curve. The breastfeeding is very stressful and hard at the moment. So I decided that it will help both me and Jimmie to take a break. He had been talking the bottle with much less fuss and screaming (yeah he actually is not the little angel you might think :) I will still be pumping and hope to breastfeed at a later date.

This decision has come with tears and disappointment. We have to do what's best for Jimmie. Anybody that has had this kind of issue please let me know how you dealt with it. email racheudaly@yahoo.com

I do realize that some baby's just decided to not eat very well for a time, Jimmie however does not have that luxury, he has to gain weight well.

When I am having a hard time it really uplifts me to know how many people are praying for us thank you and don't quit. We still have a long road.
Much Love,
Rachael

Tuesday, July 7, 2009

Tablerock Lake And Feeding Issues

The Gravitt's had a good time at the lake. I was mistaken in my last post when I said it was the Lake Of The Ozarks. It's actually Tablerock Lake.

Grandma Kathy watched Jimmie while Rachael and Justin had a blast water skiing!



Rachael and Justin were thrilled to take Jimmie on his first little vacation. His first visit of what will be many fun weekends throughout his childhood to Tablerock Lake and the Gravitt vacation home!





Overall the last few days have been emotional and stressful for Rachael. At times Jimmie has just refused to breastfeed. Most of the time he can be made to take a bottle though. It was really upsetting for Rachael to think that breastfeeding may not be working. She had a bit of a breakthrough yesterday when she discovered that Jimmie was more likely to take the breast if she held him in a position that was more upright. That is how they give Jimmie his bottles so it occurred to her that maybe his discomfort was a positional thing. This new approach seems to be helping so keep praying that this works for Jimmie. Rachael has been in tears and just so discouraged and frustrated about this whole issue.

The good thing is Jimmie has an appointment with his Neonatologist tomorrow and he has a session with his Occupational Therapist on Friday. Rachael is looking forward to addressing his feeding issues with both of these professionals and hoping to get some insight and some advice. We are really hoping that Jimmie has gained sufficiently at his weight check tomorrow too. That would at least be reassuring that he is being well nourished.

We thank you so much for your continued care and prayers!

Love,
Amber

Saturday, July 4, 2009

Down To The Lake

Justin's parents have a vacation home on the Lake Of The Ozarks. Rachael and Justin usually would go with Rod and Kathy every 6 weeks or so for a fun weekend. They have not been since before Christmas. Today they are packing Jimmie up and taking him on his first little vacation down to the lake! They will stay one night and come home tomorrow evening. Rachael said she and Jimmie will just be staying at the house. They won't go out on the boat. They won't go out to eat. They won't go into Silver Dollar City. BUT- it's still awesome that they can go and it'll be a nice change of pace for Justin and Rachael. And since Rod and Kathy will be there it'll be fun for Rach because she'll have a lot of extra help with Jimmie. He'll be super happy because he loves to be held.

Jimmie fell asleep in his swing with his hands up by his face. Rach snapped his picture. It's blurry cause his swing was moving.


Jimmie is starting to show more and more personality. The other day he threw up a little milk and it somehow went into his eye. Rachael said she ended up bathing him- which he loves, but he was so mad about the milk in his eye he screamed through the whole bath.

A few days later he pooped out of his diaper and threw up all of himself at the same time. Rachael was walking him to the bath and she said in a funny voice, "ewww Jimmie you are nasty!" And he gave her a HUGE smile!!!

Over all he seems to be a pretty serious little guy. We know he smiles purposely, but he doesn't give those away very easily. He has had a lot to be serious about in his young life.

Happy Independence Day to everybody and Happy Birthday to Ma (Andrea).

Love,
Amber