We're Tubeless...and Overwhelmed

It feels really good to have that tube out of our son's stomach.  But, we are stressed.

The hole is beginning to close and the area looks much better!  We are seeing new skin/fat growing there which is great.  But, it leaks like Ole Faithful.  It is 11 AM here and I changed his bandage 3 1/2 times already (one time I just added more gauze and tape around the side because the bandage was only 10 minutes old!).  The leakage does hurt and it has been hard to change the gauze on my own especially with James crying.  And it smells like our first PICU stay after James' first G-tube surgery.  That stay didn't go so well (frustrating nurses, a hard window ledge for a bed, a very-much-in-pain baby, and the tube eventually came out) and now I know the smell was from gastric juice.  That is why I am sitting here with chocolate while James naps.

We knew this wouldn't be an instant fix because it would take a while to close, but it is a little harder than we expected.  We can only get about 4 ounces in James at a time before it all just comes right back out.  So, back to high-calorie blends!  At least he wants to eat and drink despite the pain.  He drank three and a half ounces through a straw this morning - that's a record!  And he slept very well the last two nights, praise God!

So, we keep plugging on.  Things should be much better by the time the next work week rolls around.  And, luckily, next week my husband has a good schedule.  :D

After the Redskins loss.  :(  We didn't know yet the tube would come out the following morning.

With love.

James Got His Tube Out Today

Yup, the tube came out.  We did not plan for today to be the day, but it happened.  We are in shock still, but I will update you soon!

With love.

Merry Christmas!!!

Merry Christmas to you all!  We hope you had a wonderful, blessed day.  We are looking forward to belting out Christmas songs for the next couple weeks.  :D

We had a wonderful Christmas Eve with my family, a relaxing Christmas day at home and wonderful phone conversation with Mark's parents on Christmas night.  We received many wonderful presents but the best present was that James reaches his goal.  On Christmas Day he ate 100% OF HIS CALORIES BY MOUTH!!!  Praise God and thank you to St. Rita and all you wonderful prayer warriors out there!!!  He followed up with another 100% day today.  Now we just have to work on that drinking...

We took things really slow Christmas morning with a leisurely brunch (James ate at the table with us for the first time!) and then decorated the tree and put baby Jesus in the manger.  We spread presents out during the day which was fun.  It was the first time James got the concept of opening presents.  He enjoyed pulling the paper off and then seeing what was inside which he found extremely exciting.  He got to play with each toy for awhile before we sat down to open the next.  That made for a very happy baby.

Here are a few pics of our Christmas and a little video of James' stellar eating and exciting presents.

Merry Christmas!!!

James got a cell phone like Mommy and Daddy.

Putting his ornament on the tree!

Eating mashed potatoes for Christmas dinner.

Still in love with this present.

With love.

JAMES CAN EAT!!!

After a year and a half with a feeding tube, I would like to officially announce that JAMES CAN EAT!!!!!!!!  :D  We had a breakthrough last night after a really rough day of him refusing to eat.  It was day #7 of trying to wean, his tube was still doing poorly and we picked up a solution that is supposed to help with the soreness.  At the end of another day of no eating on his part and force feeding on mine (I hate doing that, but he has to get calories somehow) I thought we might just have to go back on the tube and fight through the pain.  But, we kept trying.

When dinner time rolled around I knew he wasn't going to want to eat.  I force-fed the feed before and he wasn't about to be happy with me.  So, tried to make him happy.  I got him in his car seat and grabbed his favorite book, "The Foot Book" by Dr. Seuss.  We finished, I offered him a spoonful, he ate it and swallowed!  A fluke, I thought.  Then came bite and swallow number two.  Hmm...what if I read him another book and give him a bite in between pages?  It worked!  I guess he loves reading so much that he forgot to fight us tooth and nail like he has for the past week.  I am so glad I stuck with my gut.  I had a feeling he knew how to eat and was just holding out on us.  Maybe it was just a battle of wills?  I mean he is almost two.  :D

Today has been a terrific eating day.  With four feeds under our belt he has taken 350 calories orally.  That is more than he has taken in the past four days combined!  With two more feeds we should reach our goal of 75% daily caloric intake orally.  Prayer to St. Rita #1 answered.  The second part is for him to take 100% of his daily caloric intake orally by Christmas and drink 25% of his necessary fluid intake.  I think we can do it!  We'll have to work on drinking a little more, but I know he has that in him too.

Here is proof!  He was a little distracted by the camera, but it gives you a general idea.  :D

Thank you all for your prayers and please keep them coming.  This is a MAJOR victory, but there is still a long road ahead involving work for drinking, different tastes and textures, chewing, transitioning to a more "normal" eating routine, etc.

Will keep you updated!

James' first Christmas cookie!

He really liked it!

With love.

Keep Praying!

We may have had a breakthrough tonight.  Whoever is praying out there is doing a good job.  :D  Thanks so much for your prayers and and please keep them coming!  St. Rita, pray for us!

More soon.

With love.

Adventures in Eating

James' tube site has degenerated to the point where giving him food through the tube is painful.  We saw his surgeon and it seems that the bleeding is coming from scar tissue around the tube.  Our first GI doctors burned his stoma (area of tissue that tends to grow up around g-tube sites) with silver nitrate in order to "remove" it which caused the scarring.  There is no real solution other than a g-tube revision surgery which would require the doctors to cut off the area of damaged skin around the tube and stitch it back around the tube.  As the doctor said, this isn't really an option at this point.  We are doing everything to help the skin heal (we have already changed types of tubes twice in the last week), but we still need to get food in him.  So we are attempting to wean James from the g-tube.

We were planning to undertake this feat after Christmas.  About one day after we started planning for this event that was still supposed to be three weeks down the road we had to get him off the tube feeds. So here we are.  We are really struggling with everything.  He needs to eat, he knows he is hungry, he can eat, but he refuses to eat a significant amount.  Yesterday we got 100 calories in him between 5 feedings.  So, we had to put food in his tube overnight.  That didn't go well.  We got him the calories he needed but he woke up crying from the leaking fluid several times.  I was hoping when I got him up this morning that things would go better.  He had a full tummy overnight so he was in a good mood but still ready for food in his belly.  He took some sips of water, but pushed the spoon away.  We have decided, after five days, that we won't fight him, just calmly take him out and try again at the next feed when he is hungrier.  We'll see how it goes today but my guess is that isn't going to last long.  We have to get food in him, it isn't an option for him not to eat.  We have good friends coming over today that are going to help.  One weaned her daughter off a tube and the other is an OT.  So, we should be in good hands.  :D

We are really struggling with everything especially because it is such an emotional stress.  We adopted St. Rita as our family saint during my pregnancy with James so she has become an important part of everything we do with James.  We said this novena several times during my pregnancy and James' hospital stays and it always got us through.  The line that jumped out at us and still gives us hope is:

"St. Rita, so humble, so pure, so mortified, so patient and of such compassionate love for thy Crucified Jesus that thou couldst obtain from Him whatsoever thou askest, on account of which all confidently have recourse to thee expecting, if not always relief, at least comfort."

Even when we didn't always get everything we asked for Mark and I always felt comforted, a sense of peace.  Our prayer now is for that comfort for Mark, James, and I as we undertake this task.  We have asked St. Rita to intercede for us to the Heavenly Father that James may be off tube feeds by Christmas.

We love St. Rita.  She really was a remarkable person who sacrificed so much for love of her God.  Would you all be willing to pray this prayer with us?

St. Rita, pray for us.

(The practice of praying to saints is in the same practice as asking one's friends to pray for your intentions.  These friends just happen to already be in heaven and have a direct line to God!)

Our little terror destroying boxes.

With love.

What Do You Do With A Tube-Fed Kiddo?

James does not think he needs to eat.  I'm not sure if he is bored with purees or he just knows that his stomach will be full thanks to that lovely feeding tube, but he is not very cooperative.  So, I decided to try something new.  We have a pack of those baby puffs that are fun and crunchy, but dissolve easily.  So, because he refuses to put them in his mouth himself, I did it for him.  He thought using his teeth was fun!  He did spit them back out, but it was a start to chewing!

Check it out!

With love.