Unhappy Boy

It's been hard today to see and hear about our normally happy energetic boy, obviously in pain and very upset about this.



Rachael texted me these pictures...





Rachael says Jimmie is obviously uncomfortable. He is on pain medicine as often as Rachael feels he needs it. Shortly after the surgery, while Jimmie was in recovery, a nurse pulled some tape off of Jimmie and removed an I.V. Jimmie became VERY upset and his oxygen sats dropped to 88 and 89. They kept the oxygen right next to him, and delayed taking him out of recovery to Rachael. They never ended up having to supplement his oxygen, but it was upsetting to hear about how hysterical he was. Grandpa and Grandma (Rod and Kathy) and Ma and Pa (Jay and Andrea) were all at the hospital this morning with Rachael and Justin. Both Grandpa and Pa tried everything that normally makes Jimmie smile and he refused. Pa said it was pretty sad.

Rachael fought a battle this evening. They (doctor) wanted Jimmie's first two feeds to be pedialyte. Rachael has been on this massive diet for Jimmie's food allergies that includes NO sugar AT ALL. The 2nd ingredient in Pedialyte is sugar . . . Rachael insisted that they just give him her breast milk. She knows he tolerates that. It took almost an hour of back and forth, logistics, but Rachael won, as usual! (-: So far Jimmie has tolerated his first two feeds. The amount is greatly reduced right now. They are working him up slowly.

Before the surgery Jimmie was satting 98, 99 . . . earlier this afternoon he was a bit lower than that at 95, 96 . . . The medical staff feels that is to be expected.

Keep praying that Jimmie heals quickly, that his pain would lessen and that he'll continue to tolerate his feeds. Also keep praying for Justin and Rachael as his advocates. Rachael is a pro at this, but could still use your prayers for wisdom, strength and peace.

Thank you for being Jimmie's warriors!

Love,
Amber

In Recovery!

Just got a text from Rachael saying, "It went well, he is in recovery. We have not seen him yet- though."

Thank you Lord! Now bless his recovery. I'll update tonight with how the rest of the day has gone.

Thank you for your prayers!

Love,
Amber

G-Tube Surgery Tomorrow

I don't have any pictures of Jimmie at the wedding in my possession yet, but as soon as I do I'll post them. He was as cute as a button! (-:

We are NOT looking forward to tomorrow in the sense that Jimmie will have his first official surgery. We are however grateful for how the g-tube is going to improve Jimmie's quality of life. He is a very happy healthy boy except for his inability to take in enough liquids. The NG tube is not comfortable and it usually has to come out and go back in once a week or so and that is always very painful and traumatic for Jimmie and everybody involved.

Jimmie had his pre-op appointment on Friday. He was running a low-grade fever, but has no other symptoms. Rachael can feel that he is working on cutting his first tooth. The anesthesiologist asked Rachael to give him a run down of all of the surgeries Jimmie's had, being a 24 weeker and all . . . When Rachael said, "None, he has not had any." He could hardly believe it. He questioned her, "Jimmie didn't have a PDA? Nope. ROP? Nope. NEC? No. No PVL or brainbleeds? No. A hernia surgery? No... Rachael said he was incredulous. He shook his head and said, "I have been doing this for 25 years and I have never heard of this in my entire time working here."

That makes us smile, A LOT. We never never take Jimmie's life and the miracles surrounding his journey for granted.

This surgery should be minor. It's expected to last about 30 minutes. They are suppose to check in at 8:30am.

Please keep our precious Jimmie in your prayers tomorrow. I will try and update as soon as I hear he is in recovery. Unfortunately I won't be able to be there or visit as me and my kids have the stomach flu.

Lord please bless this decision for Jimmie. Be with all of the doctors and nurses who are taking care of him tomorrow. Help everything to go smoothly and for Jimmie to recover quickly. Be with Rachael and Justin fill their hearts with peace.

Thank you for continuing to fight for our Jimmie Jim Jim.

Love,
Amber

P.S. They will be spending a couple of nights in the hospital. Both for Jimmie to recover and for g-tube training.

Wedding Weekend

Jimmie's uncle, Rachael's brother (and mine) is getting married tomorrow! Things are a bit crazy. As of right now Jimmie's g-tube surgery is still on for this Wednesday, Jan. 20th. Rachael said that Jimmie was not acting normal yesterday though. He was very fussy, didn't eat his solids as usual and didn't nap well. Pray that he is not getting sick. If he is coming down with something the surgery will be postponed.

Hopefully my next post will include pictures of Jimmie all dressed up for the wedding! (-:

Thank you for your prayers!

Love,
Amber

Dear Jimmie- Happy 11 Month Birthday

Dear Jimmie,

Happy 11 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.

This is you at 6 months.

This is you at 7 months.

This is you at 8 months.

This you at 9 months.

This is you at 10 months.

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!












This month:

You have gained 15 ounces. You are 14lbs!

You are 27 inches long!

Your head circumference is 17 inches around!

You are doing great eating solids, but still are not taking in enough liquid by mouth. So you will be admitted to the hospital to have a little surgery to install a g-tube. This will be an easier and more comfortable way to tube feed you. Your surgery is scheduled for Jan. 20th. We are asking everyone to really ramp up their prayers and fight for you to do well. We want everything to go smoothly.

Your mommy is still on a VERY restricted diet right now to help with your food allergies and an over growth of yeast. She has stuck to it. She has amazing will power- your momma! I am in awe of her dedication to do everything to help you. I have also noticed your momma has had an easier time being steady with her outlook and emotions. An over growth of yeast can cause depression so perhaps this diet has contributed to your mommy feeling better. I'm sure just being at home has helped as well.

Physically you are doing great, above and beyond your developmental age of a little over 7 months. You are now crawling all over the place and pulling up to standing.

You are starting to practice letting go after you pull up. Your mommy and daddy have had to baby proof the house as you are in to EVERYTHING! You tried to eat a little piece of tissue paper on Christmas day and choked. The other day you got into some paper and your mommy was pretty sure you swallowed a little piece. Sure enough, she found it later in your diaper! Now that's nasty! Your mommy had a dream the other night you were walking. It won't be long now...

Puking has been a problem for you, but this month you've probably averaged only 1 big gusher a day. Your mommy started walking around with a bowel (instead of a towel) and you puke very neatly right into the bowel. She's measured it out a few times and it is usually around 2 or 3 ounces of puke, that is A LOT. We are grateful that it's been only once a day though.

You have 107 followers on your blog!

Your Faithfulness Video Montage has been viewed 6710 times. That's 684 views this month!

Your "Jimmie's Wonderful World" montage has been viewed 708 times! That's 32 times this month.

Your blog has been viewed 5,008 times this month for a total of 69, 277 hits! You have a lot of very cool people who love to check on your progress Jimmie.

This month you and your daddy stayed for 3 days at Grandpa and Grandma Gravitt's house while your mommy went to dear friend (faux Auntie) Amy's wedding in Vancouver Canada. You had a good time and although you missed your mommy you did very well with daddy, Grandpa and Grandma.

In the spirit of the holiday your mommy baked plates of yummy treats and you helped her deliver them to the neighbors.

You celebrated your first Christmas this month Jimmie. It was exciting. There was a big blizzard!

Your daddy slid into a ditch on the way home from the fire station Christmas morning. With the help of a nice neighbor daddy used his tractor to pull the truck out. You came over to my house to celebrate with your mommy's side of the family. After that you went over to Grandpa and Grandma Gravitt's house to celebrate with your daddy's side of the family. You got a crazy amount of toys, everyone was so generous.






Your mommy and daddy even got cards in the mail with money for you! Your first Christmas was blessed!


Your first New Years (and actually a lot of this month) your mommy has quarantined you at home because there has been a lot of sick germs going around. You did catch a cold virus. This is the third time you've been sick this cold and flu season, but it is the first time that it is not associated with an aggressive tube weaning attempt. All 3 times now though you have handled sickness amazingly well! Being stuck at home isn't too bad, actually it's pretty sweet. You take your naps well. The other day you fell asleep with your daddy on the couch.

A few days ago daddy was watching you while your mommy took a shower. You were playing in your airplane saucer and daddy got engrossed in what he was reading. He didn't notice you were getting sleepy. Your mommy came out all fresh and clean and saw you there like this:

She thought it was so cute and funny she took a picture! (-:

Saturday night your mommy went to your (soon to be) Aunt Rachel's bachelorette party and your daddy went to Uncle Eric's Bachelor party. So your Grandpa and Grandma Gravitt came all the way out to your house in Odessa to watch you for the evening. You did great. You LOVE Grandma and Grandpa!

Last year- January 6th 2009 was the first time we got to see you. That was the day of the big ultrasound that was supposed to reveal how you were growing and if you were healthy. At your sister Gracie’s ultrasound your mommy and daddy received devastating news. They were told that there was something terribly wrong, that Gracie was fatally sick. Your mommy and daddy decided (of course) to go forward with the pregnancy and try to be grateful for every day they had with her. Your mommy lived with Gracie kicking and moving inside her belly for a couple of weeks knowing that she would likely never get to hold her in her arms alive. Your Ma and Pa, Grandpa and Grandma Gravitt and me- Auntie Amber were all there when Gracie was born sleeping. She was beautiful! She was almost the same size that you were when you were born. She is buried at the feet of your Great Grandpa Jimmie Gravitt. That is who you are named after!

We were all very nervous about your ultrasound, Jimmie. Your mommy and daddy had all of us there with them- Ma and Pa, Grandpa and Grandma Gravitt and me- your Auntie Amber. The lights were turned off, the doctor put the ultrasound wand down on your mommy’s belly and there you were! You were beautiful just like Gracie, but you did not look sick. The doctor moved quickly and proclaimed everything perfect and there were tears all around. That was a great day Jimmie. We also found out you were a boy! For 6 days we rejoiced and talked of little else.

Then . . .

1 year ago tomorrow- Jan. 12th 2009 your mommy experienced some spotting after having not felt well for a couple of days. Stupidly I tried reassure her everything was fine, everyone did, even her doctor. But then, just be safe your mommy was examined. It was found she was dilating. They scheduled her for an appointment with a specialist the next day, but she ended up going to the hospital that night on a gut feeling that things may be getting worse. That night they told us we were losing you. They said you still looked wonderful and perfectly healthy, but that if you were born you would not have enough lung tissue to breathe. That was a very dark night Jimmie.

As we go through the next 4 weeks to your 1 year birthday we will be remembering…

You are truly a miracle Jimmie.

I will love you forever!
Auntie Amber

See Jimmie In Action

So I have a special treat tonight- Jimmie in action! Rachael brought some video clips of Jimmie over to me today and I got to see Jimmie for the first time in 2 weeks. He is so sweet and full of smiles and curiosity.

In this video Rachael put their couch cushions on the rug so Jimmie would have something to climb on and pull up to that was soft.

Jimmie's strength and physical abilities are just astounding to the many professionals involved in Jimmie's therapy, development and follow-up care.



Go Jimmie go! You rock little man!

On a funny note that might be a little TMI- Rachael with the help of her handy dandy most awesome "hands free pumping bra" has mastered the art of pumping and driving at the same time! Don't worry- it's safe, she hooks everything up before she starts driving. AND- don't worry, she is also covered up. You have no idea how happy this has made her though! Living in Odessa she has to drive longer distances and she always has to stay on her pumping schedule. Being able to do both at once is an incredible blessing in time and logistics. If she is ever pulled over for some reason though can you imagine the awkwardness!? 0-:

We also got great news today... Rachael did not brave the 16 inches of snow and 5 degree temps just to bring me the video clips. Jimmie had an eye exam at Children's Mercy this morning. It was his first Pediatric eye exam. They dilated his eyes and just gave him a normal exam. The report was that his eyes look wonderful, he has no need for glasses an they do not want to see him again until he is 3 years old! We do NOT take this for granted and we are so very thankful for this news and all of the good reports we have ever received about his eyes. The doctor at Children's was just in amazement. She shook her head and said, "he has no effects from his prematurity." So awesome! (-:

As the date for Jimmie's g-tube surgery looms nearer Rachael is struggling a little with "cold feet" about it. Please just cover that whole decision in your prayers! She goes back and forth with the pros and cons A LOT.

Thank you all so much for your care and prayers for our sweet Jimmie. Jimmie's 11th month birthday is on Monday. 11 months on the 11th! (-: Can you believe he is almost a year old?? WOW!

Love,
Amber

A Little Mover

Jimmie is now crawling all over the place and PULLING UP to standing. He is just amazing! Rachael is excited, but also nervous. He is just too small and doesn't really understand consequences yet. He is falling A LOT, so pray that he stays safe. Rachael is working on baby proofing the house now. She did not imagine when she had Jimmie in the 24th week that she would need to baby proof before he turned 1 year old (actual birthday). Some 24 weekers are behind physically and developmentally enough that they are not pulling up yet even on their developmental 1 year birthday. It really depends on if the 24 weeker is affected with CP (cerebral palsy) or vision problems or just developmental delays . . .

I remember the NICU coming down to talk with Rachael and Justin the day she was in labor. They told her all of the statistics on 24 weekers, prognosis and quality of life. The possibility of CP among other things- was very high. I remember going in the room after the NICU left. Rachael looked miserable, but Justin looked white and completely sick! He was truly devastated after that talk. Rachael had done a small bit of research a few days before when she hit the 24 week mark, so she was not surprised by what the NICU said. Justin, however was terrified and perhaps a bit shocked. There had just been so much talk about the magic 24 week mark I don't think he had questioned deeply what that reality would be. I mean until the 24 week mark we were just hoping for a live baby, one that the NICU could attempt to save.

So praise the Lord- here we are, Jimmie is not quite 11 months old (actual birthday) and a little over 7 months old (developmental birthday) and he is crawling, pulling up and even standing with no hands. Rachael says he'll let go with one hand all of the time and sometimes both hands.

A M A Z I N G

We are blessed, extremely so.

Jimmie is still fighting to get over his cold. The last few nights he has started sleeping through the night again and does seem to feel better, but he still has lots of snot and sometimes a coughing fit.

I didn't do a Jimmie's first New Year post. Jimmie's mad at me for that so I'll let him finish this post up.

Hi guys,

My first New Year involved lots of snot, lots of coughing, some scary choking on snot, not much sleep and lots of being at home. Mom has me trapped here. A bunch of family members and friends came down with a wicked stomach bug over the past week and mom is crazy strict about these germs so yeah, I think I've left the house ONCE in the last 9 days. UGH. I'm a prisoner in my own home. So I've made things interesting by getting really good at this crawling and pulling up thing. I'm doing lots of exploring and a little bit of falling over and bonking my head. Mom may have to get me a helmet so I can wear it when I'm exploring. (-:

Anyway yeah it's 2010!! I'm gonna learn to walk this year, so watch out world!!

Later,
Jimmie Jim Jim