Monday, March 29, 2010

Jimmie Live Action Cutie

For your Monday morning. A dose of unbelievable cuteness. Jimmie live! (-:


Tuesday, March 23, 2010

Big Appetite!

Jimmie is on track to eat 16 cubes (Rachael makes his baby food and freezes it in ice cube trays) today! He has a big appetite lately! He is drinking by mouth about 300 mls a day and Rachael is only tube feeding him once now in a 24 hour period. We are still hoping he ups his liquid intake, but Rachael is learning to be patient and also open minded about the amount. She is being supported immensely by a "tube fed kids message board" where she has posted many times. I linked her latest thread because it is very interesting and informative to read all of the replies...

Jimmie is walking, but still chooses to get down and crawl when he really wants to get somewhere. He is babbling some now. He is overall pretty physical and not very verbal, but he is babbling enough that Rachael feels better about it. She said he has this hilarious fake laugh now that she's going to try to get on video.

Jimmie has an appointment to fit a bigger g-tube button (oops not bigger just new and clean..)in his stomach next month. Rachael will ask some questions about the protocol of getting rid of it at that appointment. She's nervous even thinking about it, but wants to continue to be aggressive in this weaning. She does not want Jimmie old enough to be totally aware of eating that way if she can help it. Right now the one time he's being fed by the tube (in 24 hours) is at night, she typically hooks him up and feeds him while he's asleep. So as far as Jimmie knows he's responsible for doing all of the eating work himself!

We are excited about his progress!


P.S. For those who are following McKenna- I updated her blog.

Thursday, March 18, 2010


So this week last year was the week Jimmie crashed in the NICU. It was the first day Rachael had left the NICU. She came to the studio and taught a dance class. Shortly after she got back, (Thank God she was back), Jimmie had just finished up with a blood transfusion and suddenly he screamed in pain and then turned blue. His sats plummeted and Rach and mom (who was there visiting) were pushed out of the room while doctors and nurses rushed in to work over Jimmie. They had to bag him and then re-intubate him as he was not on the ventilator. While they were intubating him they saw blood pooling in his trachea area. The medical staff worked over him constantly for hours. Justin, Rod, Kathy, Dad and I all rushed to the hospital from work and kept vigil. There was lots of praying! I was begging for Jimmie's life. He had done so extraordinary up to this event.

I saw two of the medical staff in tears over Jimmie. They cared for him and our family so much.

It was thought that Jimmie was having a pulmonary bleed, but as the long night progressed and Jimmie kept bleeding it was noted that though they continued to suction out bright red blood- his lung function was not getting worse. He was more critical then he had ever been. He was not breathing on his own at all and the ventilator and oxygen were on higher settings than they had ever been for Jimmie. He also had to be sedated in order to hold his sats steady. But-- he was not getting worse. By morning Jimmie's doctors were starting to consider that the bleeding was originating from somewhere less serious than the lungs. His nasal passages were the best guess.

Rachael and Justin stayed by Jimmie's side all night long. In fact Rachael was probably up for 40 hours straight. The morning after was St. Patrick's Day. Justin remembered that yesterday. Rachael recalled to me (her favorite nurse Carolyn) made her leave the NICU in the late morning and take a walk around the hospital because it was a beautiful spring day.

Fast forward to this week and Jimmie has come SO FAR!! You guys won't believe what Jimmie is doing . . . HE IS DRINKING LIQUIDS!!!! We are so thrilled. Tuesday he took a total of 260mls by mouth and yesterday over 300mls. Ideally he needs to at least double that, but this is such an improvement. He is also eating like a horse and happily. And ANd AND- his nutritionist came yesterday and he has gained 7 ounces despite being sick and is almost 15 pounds! He's 14lbs 13ozs! All this with only 2 or 3 tube feeds in a 24 hour period!

Praise God! Go Jimmie go!

Here are some cute pictures Uncle Nate took the other day.

This is Rachael... around Jimmie's age... (That's for you Aunt Leanne!)

This is for Aunt Leanne too! (-: (Don't kill me)

Aunt Leanne and Rachael . . .


Check Back Later!

Awesome news about Jimmie and some very cute pictures coming later this evening! (-:

Friday, March 12, 2010

Dear Jimmie- Happy 13th Month Birthday

Dear Jimmie,

It's already been 1 month since your 1 year old birthday. However it is *STILL* 11 weeks until your developmental 1 year birthday. You were born 1 week short of 4 months early. That's 15 weeks before your due date. It is still unbelievable to me that you have survived and even more so you have THRIVED!

This you right after you were born.

And this is you today!

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

Look how you've grown in your father's hands!

You are getting so big Jimmie and there are so many pictures all in a row to scroll through that I decided to do your "month birthday" posts a little differently now. I'm only going to post the first and then most recent photo. But I made a montage with all of the pictures in order so we can all click and watch them like a slide show. I used a piece of music from your Pa's cd Sound Tracks!

This Month you have gained a whole pound and then lost almost 1/2 of it. You were all the way up to 14 lbs 8 ounces, but now you are back down to 14 lbs 2.5 ounces.

You've gained a little under a 1/2 inch in length! You are 27 1/2 inches long.

Your head circumference has increased by 1/8th inch. It is 17 1/8th inches around!

You have 112 followers on your blog!

Your Faithfulness Video Montage has been viewed 8,206 times. That's 724 views this month!

Your Jimmie's Wonderful World montage has been viewed 780 times! And your new High Places video montage has been viewed 423 times!

Your blog has been viewed 5,250 times this month for a total of 82,451 hits! You have a lot of very cool people who love to check on your progress Jimmie.

The first part of this past month you were eating like a horse Jimmie. You were eating two cubes or more of baby food (3 or 4 times a day) and other little snacks and sides. You were tolerating up to 5 ounces of breast milk through your g-tube without vomiting and you were even starting to take small amounts of liquids from your sippy cup. You were doing so well that your nutritionist and your mommy decided to cut back your tube feeds to only 3 and let you take in all of your nutrition by mouth for most of the day. Shortly after that change was made you dropped off a bit and your mommy became discouraged and worried. Then it became apparent you were fighting a virus.

This virus has been a nasty one for you. Tons of snot, coughing, no appetite, gagging and puking, fevers, double ear infection and a little bit of fluid in your left lung. Lots of family and friends have been sick including your cousins Cole and McKenna. Also your Daddy and Mommy and me- your Auntie Amber. Ugh!

As of this morning your mommy thinks your lung already sounds much better. She thinks the fluid may already be gone. She did a TKM sequence Ma told her to do on you after you were asleep last night. This sequence was for fluid in the lungs. Perhaps you are out of the woods for pnuemonia now. We hope so!!

Also the last few days the horrible puking has gotten less and you are starting to eat better again! Yeah! We hope you can pick right up where you left off and continue on the path your OT Ms. C. has assured your mom you are on. A path to no more tube feeds.

We had a birthday party for you this month at your house.

It was perfect!

You were a doll!

Not only did you have that party at your house, you also went to the February birthdays celebration at your Great Grandpa and Grandma Hester's house and you celebrated your Grandpa Rod and Uncle Kevin's birthdays.

You cut your second tooth. Now you have two on bottom.

Just a few weeks ago your momma was starting to be concerned because you really were not babbling yet. Almost as soon as we posted about it you started babbling! (-: You are now saying, "ma ma ma, ba ba ba and da da da.." Yeah! Go Jimmie go!

You are in to everything Jimmie. A few days ago your mommy pulled toilet paper (from out of the toilet- YUCK) out of your mouth. You tore a leaf off of one of her plants and tried to eat it. AND you got into the wood box and ate some dirt you found at the bottom. You are hard to keep up with little man!

You have started taking steps regularly this month. You still choose to crawl when you really want to get some where, but you are taking more and more steps in a row without falling over.

Jimmie I am really hoping this next month is a little easier for you. You have done very well handling sickness this winter, but it has been hard to see you progress and then get knocked backwards over and over. Especially with your eating and your weight gain. Most Micro-Preemies are hospitalized with sickness in the first year, sometimes numerous times. We feel very fortunate and grateful that this has not been the case with you. Jimmie you are an awesome little man. You have so much spunk and fight in you. I am so proud of you and inspired by your energy and your perseverance. You try try and try again. And you do so with an unbelievable will to conquer! You are my hero Jimmie!

I'll love you forever!
Auntie Amber

Thursday, March 11, 2010

Post Delayed-Updated!


Long day! The 13th month post is 1/2 done, but I won't be able to get to the rest of it until tomorrow. My little girl has been diagnosed with a nasty double ear infection today- just like Jimmie.

Jimmie unfortunately had to go back to the doctor today because Rachael thought she could hear something in his lungs. Sure enough- he has a little fluid mid-line in his left lung. The good news is it does not seem to be infected. He is not feverish and he is satting 100 oxygen wise. He is eating much better and playing and seems to feel better than he did a few days ago. However because of his micro-preemie history they are going to play it safe and give him a big guns antibiotic to hopefully prevent it from turning into pneumonia.

Please pray that Jimmie's body takes care of the fluid quickly and that he would heal completely from this horrible, no good, very nasty virus!

Previous post:

Between Rachael and Jimmie being sick and me and my two kids being sick, well- Jimmie's 13th month birthday post is not going to happen tonight. Hopefully I'll get it done and posted tomorrow!


Wednesday, March 10, 2010

Sickness Update

Jimmie is feeling better. The past two nights he's slept the night in his crib. He still has a lot of snot though and has been puking a lot! All of the puking he is doing really has Rachael discouraged. There is no way he is getting enough right now to grow on and she's afraid they are going backwards again. This winter has been pretty tough on Jimmie in that respect. Every time he has made headway on his weight gain some thing has knocked him backwards again. We are hoping he can maintain 14 pounds, but it's not looking good. He's has been all the way to 14lbs 8oz twice now. Last time he went back a whole pound. We don't know where this will leave him yet. So please pray the puking stops. We think it's possibly all the snot he has or maybe the antibiotics...

Tomorrow is Jimmie's 13th months birthday, so hopefully we'll have the latest summary post up by tomorrow evening.

We really appreciate your prayers!


Monday, March 8, 2010

Ear Infection Times Two

Jimmie worsened in the night and started running a fever again. Rachael and Justin took him to the doctor this morning and the poor little guy has a double ear infection. )-: He's been really miserable, coughing, lots of snot and puking . . . This is his first ear infection. They are filling a prescription for antibiotics. Rach was undecided whether or not she wanted to go that route so Justin made the decision. Pray that the antibiotic clears up the infection and that his ears heal and stay healthy! The good news is his lungs sound great. Rachael has a stethoscope and has in her words, "been obsessively listening to his lungs". She has thought they sounded fine and the NP confirmed that today saying they sound chrystal clear- which is so important for Jimmie. He does have Chronic Lung Disease because of his prematurity although you wouldn't know it. He has not once had an infection or any trouble with them. Well except for his crash and bleed back in the NICU when he was a little over month old.

Jimmie is going to spend the afternoon with Ma so she can apply TKM therapy. Justin has already had this nasty virus, but Rachael has not. She has a bad sore throat this morning so she may be coming down with it. )-:

Thank you for praying!


Saturday, March 6, 2010

Still Sick

Poor little guy has a nasty cold virus. I feel his pain because I have it too. He has coughing fits upon waking up in the morning. He gags on his solids and throws up his milk from tube feeds. He is not running fevers anymore though and doesn't act like he's in a lot of pain. He is clingy and fussy, but that is to be expected.

Rachael took him to see Ms. C. the awesome OT on Thursday and she greatly encouraged Rachael about Jimmie's eating. Despite the fact he is eating a little less, she feels he is still doing great and that it won't be long before eating is much less of an issue. Within a year she expects him to not need his tube regularly! She continues to insist that Jimmie doesn't need her anymore. Rachael however- does need her.

Rachael at this point has a lot of "post traumatic stress" wrapped up in Jimmie's eating. Any little bump or setback or slow down really throws Rachael into a tale spin with her thoughts, feelings and emotions. Rachael knows that her feelings don't always line up with reality on this, but she is still often very overwhelmed by them. An outsider (some one who's not me or mom or Justin) like Ms. C. who Rachael is assured that she knows her stuff with kids like Jimmie- is able to comfort, encourage and lift Rachael up in a way the rest of us can't. So we are very grateful for her help and wisdom and that she will continue to see Jimmie every month or so.

Please keep Rachael as well as Jimmie in your prayers. Jimmie's first year of life was also the fight of Rachael's life. It has been an enormous precipice that Rachael has climbed and she has been very bruised and battered on the way up. There is a lot of healing to be done. Having the experience she has had with her 2nd born after what happened with her firstborn has in some ways just added injury to injury . . .

God is so faithful! He has never left our side.


Tuesday, March 2, 2010

Eating Problems

Jimmie is sick. He has a fever of around 101. Justin has been sick for the past week so it's probable Jimmie has what he has had. Please pray that he gets over this quickly and easily.

Another matter for prayer. Jimmie has been eating so well that about a week ago Rachael and his nutritionist decided to cut back his tube feeds to only 3 in the late afternoon and evening. Ever since they cut his tube feeds back Jimmie hasn't been eating as well. He's ultimately taking in an acceptable amount still, but it is not as easy to get him to eat . . . He's fighting it and is fussy. This has really knocked Rachael down into the dumps and discouraged her. Jimmie "seems" to have responded to this change in his feeding schedule negatively. If that is the case it is clear that this is a psychological problem for Jimmie. Or perhaps you could call it a "challenge" instead of "problem"...

Anyway- Rachael was not really looking at this change originally as a weaning attempt. We kind of just figured that after he started taking enough liquids to stay hydrated the tube feedings could go away with no ill effect. But if the conclusions we have drawn about this are accurate than it seems that dependency on the tube could effect his eating over all (solids too). Which is a bit depressing. Rachael expressed that what she does not want is for Jimmie to be 2 years old and pulling up his shirt and asking for a feed in his g-tube. We know that "physically" he is perfectly capable of eating and has been doing so beautifully.

Now it is possible we are wrong in our suspicion and that something else has effected Jimmie this past week and caused him to be fussy and hard to feed. Perhaps he's not felt well, perhaps his new tooth that came in was hurting . . . Obviously it's impossible for us to know for sure at this time.

So please just continue to pray for Jimmie and his eating! Also pray for Rachael and Justin to have patience, peace and wisdom for this part of Jimmie's journey.

In case you missed it- check out the post below! I posted a "must see" cuter than cute video of Jimmie walking . . . well trying . .anyway. (-:


Monday, March 1, 2010

Jimmie Walking!

Check this out!!!

AAaaaaa . . . He is way too cute!! (-:


P.S. I'll post more of an update tomorrow . . .