Jude Michael Trahan

2012-01-25T11:33:00.000-08:00

2011-06-23T18:11:00.000-07:00

We just celebrated some one's third birthday!!! Just wanted to share a few pics. Jude's getting to be our big boy! We've even managed to give up the pacifier...I know, it was past time for that!

2010-12-26T07:56:00.000-08:00

MERRY CHRISTMAS AND HAPPY NEW YEAR!!

2010-12-13T18:47:00.000-08:00

HELLO OUT THERE!!!!!!!

I know there are at least one or two people still checking on us via the blog. So this one is for you all!

Update: We very recently returned from a quick trip to Omaha for a "Jude check-up". He's looking good! Currently Jude is being fed by his feeding pump for 10 hours over night. During the day, we feed him whatever we can get him to eat! We plan to wean him from his overnight feeds hopefully by March. Which, my friends, would be JUST awesome. He would still require his special formula throughout the day. We will let him drink as much by mouth, and "push" in the rest through his gtube. This however does not require the pump. Just a special syringe and it's over in seconds. Long-term goal will be to remove the gtube completely by the time Jude begins kindergarten. Again, this would be awesome. So, that's the plan! Wish us luck. :)

Jude is happy, healthy, and growing in many ways. He enjoys the outdoors. Watching Cat in the Hat. Reading his books (over and over and over). Playing with his daddy. Climbing. Climbing. And more climbing. Currently his favorite and most used answer of the day is "YES SIR REE". And occasionally shows good manners by using the expression "Thank you very much-Appreciate it". Jude recently enjoyed his first concert, "Elmo Live". He actually sat still for 90 minutes...miraculous. The boy has energy!

We give thanks everyday for this child and remain humbled and grateful for such a blessing.

We are looking forward to Christmas and wish you all a very happy holiday season. Merry Christmas!!

Love and prayers~

2010-07-15T05:25:00.000-07:00

More birthday pics to come!! We can hardly believe Jude is two years old. What a reason to celebrate!

2010-04-15T10:19:00.000-07:00

Well.....we've just celebrated our one year "homecoming" anniversary! And let me tell ya, it has been an incredible year. We've enjoyed watching Jude grow and change and laugh more than we could have ever imagined. He still manages to take our breath away!

Jude made it through the winter without much of anything as far as illnesses are concerned (thank God!)....but the allergy season has a pretty tight hold on him right now. But, thankfully we have pulmicort and albuterol. They are helping us through!

Enjoy the Easter pics....a sinus infection slowed him down a bit, but he still loved hanging with his cousins!

Love and prayers~

2010-02-04T07:52:00.000-08:00

Yep....he walks! ALL OVER THE PLACE!! It seems like it all happened over night. He crawled, he cruised, and now walks. Something clicked. He figured it out.

Other than a nasty little cold he's just getting over, he's doing very well.

We are getting ready for the big game on Sunday...and looking forward to baseball season with the Ragin' Cajuns!! Very exciting!

2009-12-05T14:02:00.000-08:00

I HAD to post one more new pic of Jude...with Wilson. Wilson is the sock-doll in Jude's lap (if you look closely). He was given to us a day or two after Jude was born. We named him "Wilson" (obviously, the name was inspired by the movie Castaway because of the drawn on face). Wilson appeared in many of Jude's blog pictures, and he spent most nights and days with Jude while he was in the hospital. So, he's special to us, too. :)

And the snow.......it never really came. Oh well.

2009-12-04T07:37:00.001-08:00

Just wanted to share a few of our new family pics.

We enjoyed our Thanksgiving (truly had/have so much to be thankful for), and we are now gearing up for Christmas. Jude doesn't have a clue....but we sure are excited. This time we are home for the holidays, Santa, we're home, Christmas trees, we're home... :)

AND IT'S GOING TO SNOW THIS EVENING....CRAZY, BUT AWESOME!

Happy Holidays, everyone. I'll post some Christmas pics asap!

2009-11-17T17:49:00.001-08:00

Another Nebraska check-up down! Jude looked pretty darn good....we won't need to return until June!! Great news!

Our little boy is growing and changing EVERYDAY. He's crawling, pulling up to his knees, and as seen in one of the pics...he managed to pull up to a STANDING position. He's closing the gap....and it seems to have happened overnight. He gives his mom and dad kisses, high-fives, waves bye-bye, and plays his little heart out all day long. He's very happy.

Jude is only hooked up to his feeding pump for 10 hours over night. We've gone from 24 hours a day...to ten overnight hours. Awesome. We are really focusing on taking in as many calories by mouth as possible. He can be stubborn at times, but we're patient. In time, he'll do it...we have no doubts.

As always....thanks for checking in on us! Love and prayers.

2009-10-06T09:10:00.001-07:00

Just a couple of new pics! Working to get a video clip posted...

Omaha check up the first week of November.....Jude's well and happy!!

2009-08-21T07:40:00.000-07:00

Just wanted to post a couple of pics of Jude...and to say that he's doing well. Other than a runny nose from time to time, he's happy and healthy.

Our biggest focus for now is physical therapy....we'd really like to see Jude crawling, but he nearly refuses being on his tummy. It's big, it's round, there's a g-tube there....he just isn't feeling it. He does pull up to a standing position, which is a big deal in Jude's world. Only a few short months ago, he wouldn't bear any weight through his legs. So, we are making progress; just not sure how the "crawling thing" is going to work itself out. BUT....his therapist is very encouraged by what he is able to do considering his history. She thinks it's just a matter of time for Jude....everyday he's a little bit stronger.

I think Jude is feeling at home in his new house, and really likes his new room. We've gotten to the point where we only need to lay him in his bed with his blanket and pacifier, and he'll fall asleep on his own. NICE! I do miss rocking him to sleep at times, but this sure beats the days it took nearly two hours to get him to sleep at night. Poor baby...he just didn't feel well. BUT, things have changed, and he's an easy and really happy baby today. Thank God.

We hope everyone is well. Love and prayers~

2009-07-18T11:12:00.001-07:00

A number of things have taken place since the big birthday celebration.

First, Jude ended up with a pretty nasty respiratory infection which landed us three nights in the hospital to receive IV antibiotics. BUT, he was such the trooper and handled it very well.

Second, we FINALLY moved into the new house here in Lafayette. We had been staying in an apartment temporarily while construction was wrapping up on the house. We love it, and Jude has his own room and bed for the first time EVER!! Once we became outpatients in Nebraska, he slept in a pack-n-play, and his nursery furniture sat in storage until NOW. He sleeps in his bed, in his room....all night.

Last, but not least....we had our three month check up in Omaha this past week. Our Nebraska family was pleased enough with Jude's progress that we aren't having to return until November. We enjoyed some time at the Omaha Zoo, and took Jude to visit the Rosenblatt Stadium just next door. It was an easy enough trip, and we really enjoyed seeing everyone that took such great care of Jude.

Jude-man is just over 20 lbs. and is 28 inches long. What a difference a year makes!!!! He is still my hero.

Love and prayers~

2009-06-22T19:31:00.000-07:00

Happy Birthday to Jude, happy birthday to Jude, happy birthday dear Juuuuuuuuude....happy birthday to Jude!!!

It was quite the celebration!! Enjoy the pics of our "BIG" boy!!

~Love and prayers

2009-06-12T18:21:00.000-07:00

I know, I know....it's been way too long! What can I say? Things are great.

My little boy laughs and smiles all day long. He's becoming a very happy baby...more and more everyday.

Jude has two teeth, is 27 inches long and 19 pounds (we started at 11 1/2 inches and 1 1/2 pounds); tries very hard to talk and says things like "dadada" lately; he thinks it's hilarious when we quack like a duck (actually, he finds any strange sound amusing); he loves watching Baby Einstein videos and Mickey Mouse; he likes playing in his walker and scoots backwards in it; is crazy about peek-a-boo and playing patty-cake; is entertained by sippy cups and uses them as chew toys (not interested in actually sipping out of them); and I'm pretty sure he likes "Boom Boom Pow" by Black Eyed Peas. The list could go on.....

Most importantly....we are ten days away from celebrating Baby Jude's first birthday. Many times over the past year, I've wondered what kind of day
June 22, 2009 would turn out to be. We will celebrate!

Jude makes his mom and dad very happy and so very proud. His sweet little smile puts a squeeze on our hearts everyday.

Thanks for checking in...next post will be a "birthday update".

Love and prayers~

2009-05-17T15:54:00.000-07:00

A few new pics for fun....we're still just enjoying life. I promise a detailed report will come soon. Enjoy the pics of my boy!

Love and prayers~

2009-05-02T10:42:00.000-07:00

This weeks labs show a bilirubin of 0.9; That, my friends, falls within the "normal" range. Yahoo.

Love and prayers~

2009-04-25T16:16:00.000-07:00

We are loving loving loving being home!! And other than the weather (allergies,etc) Jude has adjusted very well......we are having the time of our lives!!

Love and prayers~

2009-04-07T15:32:00.000-07:00

Thursday.....Jude, his mom, his dad...................LOUISIANA!!!!!!!!!!!!!!!!

Our little boy has a heck of a LIFE ahead of him....and we are finally getting to take him to it!!!

Thank you Nebraska Medical Center and IRP. Fantastic people...excellent care. We'll see ya in June!

Home...Thursday.

Love and prayers~

2009-04-05T12:26:00.000-07:00

I'm feeling pretty confident that Jude and I are finishing up our last weekend in Nebraska....for a while, anyway. And we were so excited to share it with Uncle Tanny and Aunt Clare....we took Jude on his first trip to Cabelas. He was a very happy baby this weekend, and was definitely on his best behavior for his guests!! We had a great time...and look forward to seeing them again in just a couple of days (this time in Louisiana). :)

Looking forward to daddy-o coming to pick us up this week...fingers crossed. Fingers crossed!!

Love and prayers~

2009-04-02T13:32:00.000-07:00

Today is a good day.

Jude's central line was pulled at 8:30am. It's gone. Good-bye. Good riddance. Central line infections are so so so scary....it feels as though the weight of the world has just been lifted...relief relief relief!!

And the absolute best news of all....if our man Jude can make it to his next clinic appointment on Tuesday of next week without doing anything "crazy", we get to go HOME!! H O M E...home! We should be back in Louisiana by the end of next week. Home for Easter!!!

We are so excited, and even more, proud of our Jude for what he's managed to overcome....for being a survivor. Thanking God and all of Heaven today for the privilege of being able to take him home. One week!!

Love and prayers~

2009-03-31T16:44:00.000-07:00

Another successful week!! We've made it a full week without running IV fluids through Jude's central line. He handled the change very well and looks pretty darn good from a hydration stand point. His bilirubin was stuck at 5 for a few weeks...but made it down to 4.8 this week. And his weight this week is about the same as last week...which isn't a bad thing. We made lots of changes, and he didn't need to continue to gain at the rate he was gaining. All good news.

Now for the master plan. Tomorrow we are scheduled for a small bowel series/study. This is just where they inject barium into his gut, take pictures of it traveling through his intestines via x-ray, and look for any things such as strictures, etc. We are having it done so that they have something to compare futures bowel studies to (once we start returning to Nebraska for check-ups). Should be simple enough. If the study doesn't show any "issues", then the central line gets pulled on Thursday.....of this week!!! Yep. Awesome.

If all goes smoothly....we should be home in two weeks. IF ALL GOES WELL....two weeks!!! Again...everyone, let's say a prayer!! :) Yahoo.

I will update again on Thursday. Hopefully it will be with the news that the central line is gone...gone...gone. Hopefully. St. Jude, can you hear us calling? ;)

Love and prayers~

2009-03-24T12:12:00.000-07:00

Well. We did it. We have been on continuous g-tube feeds since Saturday morning at 7a.m. And Jude is tolerating it just fine. So much so, that while we were at clinic today they pulled out the old g/j tube, and put in a brand new g-tube (no j-tube with this one). It's official.....the belly is working!!

We had a much healthier weight gain over the last week...I believe his weight was somewhere around 16 pounds and 6 ounces today. Something else happened while at clinic today....they decided to quit running over night IV fluids through his central line. Now, we will formula feed for 22 hours through the g-tube, and will run a fluid bolus for 2 hours a day through the g-tube as well. This means....if Jude can handle not having fluids run through his central line, we will NO LONGER need the line. He has two weeks to prove that he can stay well enough hydrated using his g-tube only....if he flies, the line gets pulled. In two weeks. Two weeks. Can you see the smile on my face?

Quick prayer everyone! If Jude's line gets pulled in two weeks then we get to start making plans to GO HOME!!!! We could very well be home in a month's time.

Here's to our little superman...hoping he's ready to fly!

Love and prayers~

2009-03-17T18:16:00.000-07:00

Our boy Jude is a whopping 16lbs and 3ozs today! Ummmmmm....that's a pretty darn big gain in just a weeks time. Maybe too much. The good thing is that those intestines are soaking up those calories. But we did need to make a few adjustments so that we aren't creating a fatty liver. We've lowered his formula calories, and we've also taken out all of the dextrose from his night-time IV fluids. Easy enough.

G-tube feeds......this is what the staff wants us to focus on this week. We are currently getting in about 6 hours worth of g-tube feeds/day. They really want to start pushing him, and possibly get him to full-time g-tube feeds by next week. So, I will try and increase the time every day as long as he is tolerating it (no vomiting, etc). Wish us luck...we've got some work to do...but I think he's ready.

It was near 75 degrees today in Omaha. Jude and I enjoyed a little outside time together on this St. Patty's day...until the wind started to blow. He wanted no part of it after that! Oh well. Baby steps.

Love and prayers~

2009-03-14T19:02:00.001-07:00

Man, oh man!! We've had a good week.....lots of visitors to keep us company!! Jude spent the majority of the week with his daddy-o, and then over the weekend Jude got to see his Aunt Jenny again, and was able to have his first meeting with his cousin Jack!! We were so excited!! Jack's words after meeting Jude...."Boy, he's beautiful." Awwwwwww......

It was so nice to have a full week surrounded by family......Jenny and Jack even took us on a trip to Target!!!

Enjoy the slide show pics of our weekend.

Love and prayers~

2009-03-10T14:15:00.000-07:00

One full week off of TPN.......and we've reached 15 pounds and 6 ounces. Quite a gain!! This tells us his intestines are doing a darn good job with absorption, and we still aren't even using all of them!! Good job, Jude!

His bilirubin was 5.4 with this weeks labs...so we are still moving in the right direction. I think 1.0 is considered within a "high-normal" range. Getting there. His color looks better every week.

We have decreased over-night IV fluids twice over the past week....again, that's good stuff. He looks great from a hydration stand point.

So, everyone was once again very pleased with Jude's progress at clinic this week. We were told that it isn't quite time to go home, but it seems that we are in the last stages of our journey here in Omaha (other than our follow-up visits) . Jude's records are being faxed to a G.I. doctor in Baton Rouge that we will see every couple of months or as needed...and we were told to decide on a pediatrician in Lafayette so that his records can be faxed there as well. I can't say when we'll be home...but I can say how wonderful it feels just to be talking about this kind of stuff with the staff here. Awesome.

This week we are really focusing on g-tube feeds. Over the past three days we've managed to get in three g-tube feeds per day...any where from an hour to an hour and a half per feed (without any puking, that is). I think his little tummy is wanting to wake up....we're just being very patient and very careful.

Thanks for continuing to check-in on us, and especially for continued prayers. Thank you Saint Jude for always interceding for our sweet boy.

We love you, baby Nathaniel James LeBlanc...heaven's perfect angel.

2009-03-03T09:17:00.000-08:00

What a day!

We had our clinic appointment today. Jude weighed in at 15 pounds (well, 14lbs and 15ozs...I gave him an ounce). He's putting on a good amount of weight from week to week, and over the past several weeks we've been able to give 2 to 4 hour TPN breaks a day (we cut lipids completely about a month ago...that was huge since they are hardest on the liver). Anyway, much to our surprise today, they decided to discontinue TPN all together!!!! This is HUGE!!!! A definite milestone in the life of a "short-gut". Today I will prepare and hook up what will hopefully be Jude's last bag of TPN. Wow. It feels great to type that...we needed this today. We really did.

Our new plan:
-Starting tomorrow we will run just IV fluids through Jude's central line over a period of 16 hours (decreasing this amount from week to week until it is no longer needed). Once Jude no longer needs the IV fluids, his central line gets pulled. That will be another huge accomplishment.....we are hoping to make this happen within the next month. Prayers. Prayers. Prayers.

-Starting today, Jude will get his feeds through his g-tube an hour at a time every 3or 4 hours, and we will increase the g-tube time for feeding daily if he is tolerating the change. He'll have to show us what he can do with that little tummy of his. The sooner he tolerates the g-tube feeds, the better. He will have his stomach and about 25 extra centimeters of intestines by feeding this way...his j-tube bypasses about that much of his intestines. PLUS....then we go home!!!!!!

Of course, our boy has to stay well. We still have that central line in, and "other things" can always surface, but we sure are excited about today. Good bye TPN.

We are at 42cc's/hour...and will now only increase by 1cc every other day....because we are asking him to do A LOT...plus we have to be careful about how many poops he has in a day...and trust me, it's already plenty!!!! :) We can't push much more that we already are at the moment.

We'll let you know how it goes over the next several days.

Love and prayers~~

2009-03-02T11:27:00.001-08:00

A new update to be posted tomorrow after clinic!! See ya then. xoxo

2009-02-20T17:26:00.000-08:00

I know it's been a while since I've given a "detailed" update...so here it goes.

Our latest set back was having to be readmitted last weekend when Jude began running fever and had blood-tinged stools. Long story short, we found out that he has an overgrowth of intestinal bacteria due to long-term antibiotic use. Obviously, we couldn't really avoid having to use the antiobiotics. We've had to deal with and treat quite a few infections over the last several months. So we are now treating this with...you guessed it...an antibiotic! I know, interesting. Anyway, we were discharged on Wednesday and have been back at the suite since. Things are going well. Jude clearly feels much better.

At the time we were admitted, our feeds had made it to 35cc's/hour. With the diahharea, feedings were stopped for a day, and started again on Wednesday at 20cc's/hour. On Friday, I was to start increasing by 5cc's a day until we reached where we had left off at 35.....today is Sunday, and we are back to our 35cc's/hour. From this point, we go back to our original plan of increasing by 1cc a day. So this has been one of those minor setbacks that you hope you don't have to deal with, but it comes with the package, and we are thankful that it wasn't worse.

Jude was 14lbs 2ozs the last time we had a weigh-in....he's gaining. He's very wide these days.....I'm waiting for "little stumpy" to stretch a bit...get a little longer...COME ON GROWTH SPURT!! I know, I know...don't get greedy. We have another weigh-in on Tuesday with clinic, but we've possibly stalled or maybe even lost a bit with this last bacteria issue, but I think we'll get back on track fairly quickly.

As far as getting back to Louisiana goes...it all still depends on how quickly we can get off of the TPN and start feeding just through the g-tube instead of the j-tube. Our original thought of March isn't likely because we had such a set back with the surgery in December......if all goes well from this point on, April at the earliest, May the latest. That's the "vibe" I get when talking with the staff about getting out of here. But I understand why it's hard to say "for sure"....because "things" come up. Jude happens! April would be nice....NO MORE INFECTIONS!!!!!!! We have to stay well. Speaking of, Jude's bilirubin was 6.0 with Friday's labs. This is still out of the normal range, but considering we had reached 16.9 back in November we were very pleased with 6.0.....gettin' that liver into shape!!

Jude has become very difficult to put to sleep. This is new....it was once so easy. What happened? It's now a scream fest until he has nothing left...no fun! But he thinks it's funny when I make "motorboat" noises, and he tries to do the same. I see more of his little smile everyday. I hope it stays that way.

Thanks for continuing to check in on us and for keeping us in your prayers. We sure have survived so much, haven't we?!

Love and prayers~

2009-02-17T10:57:00.000-08:00

Sorry about having to use Jude's blog for this, but I thought it would be a pretty good way to let my email friends know that my bellsouth email account is no longer valid. Please use beatsybelle@yahoo.com for all emailing. Thanks!

2009-02-14T18:41:00.000-08:00

WHAT A VERY SPECIAL VALENTINE'S DAY WEEKEND!!! Aunt Dae Dae and cousin Lizzy flew all the way to Nebraska on one of the snowiest days of the year so far. What a treat for all of us!!

Jude was able to meet his cousin Lizzy for the very first time EVER!!!!! I think he fell in love....he actually let her rock him to sleep...twice!!! That's a big deal because he's pretty much a mommas boy. It was so sweet. And I enjoyed just being able to sit back and relax.

Enjoy the pics of their "rocking" experience, Lizzy's fun in the snow, and me and Aunt Dae "cuttin' up".

Happy heart day, everyone!!
xoxoxoxo

2009-02-07T19:10:00.001-08:00

It's been over a week....and we're still out!! Woohoo.

It was a busy week full of appointments...labs, clinic, physical and occupational therapy...and in just a few days we also will incorporate food therapy into our weekly schedule. We've been without the bottle for quite a while now, and pretty soon we'll be introducing cereal....Jude's never had to use his mouth to eat...really ever. So he'll need the help (and so will I). I'm looking forward to these sessions.....hoping they will help.

Jude still has not found any enjoyment in PT or OT sessions. I actually start to feel very anxious right before our appointments because I know now how he responds. His latest....thinking it's time to go to sleep when they lay him on the mat for certain exercises...yep, closes his eyes and sucks aggressively on his pacifier....just like he does at nap time. I just sat back and laughed at that one....his way of getting out of the work. :)

We are at 30cc's/hour with feeds. Quite an accomplishment, don't you think?! Over half way to full feeds. He is still being fed through the j-tube which feeds his intestines directly. The reason...his stomach still has some waking up to do. If we feed him through his g-tube (which goes directly into his stomach) he is spitting up food.....so he needs a little more time there before we no longer use the j-tube. We'll get there. We've asked his little tummy to do lots of work very quickly, and it has done a fine job. We have to be patient with the rest.

I've worked very hard to try and get Jude on some kind of schedule (play, nap, etc). He's been in the hospital for most of his life.....so a schedule we did not have. Ummmmmm....that's hard work. The mornings we seem to have figured out, and he sleeps all night which is wonderful....but he's keeping his momma busy with all of the other time in between....but it's so nice to have him with us. Thanking God everyday for the privilege.

Love and prayers~

Saturday, January 31

2009-01-30T13:38:00.000-08:00

Well...we've made it two full days, and we're still outpatients. Jude has decided to cooperate this time (at least up to this point)! Thank God!!

After a very peaceful and quiet night's sleep, I thought for sure my little boy would be ready and willing for his early morning physical and occupational therapy session. As you can see from the pictures, he wasn't. He pretty much just threw one fit after the other, looked desperately at me for help the entire time, and pooped TWICE in the one hour that we were there... (Jude's signature move lately, by the way...pooping at the most awkward and inappropriate moments). Needless to say, I have a feeling he DID NOT impress the judges...BUT, what can I say? At least we showed up, right? Obviously, we've got some work to do......we'll get there....all in time.

We're still eating! We are about at our halfway point as far as the tube feedings and still needing TPN goes. We are at 23cc's/hour, and the plan for now is for me to increase his feeds by 1cc/day...as long as he is tolerating the increase. So, if all goes well, we could be at full feeds within a few short weeks...but, we all know that "things" happen....there could be times when we need to slow down or even back up....Jude will let us know. Most importantly, we don't have too much else to focus on other than feeding...hoping to keep it that way!!!!

We have a busy week ahead of us...PT, OT, labs, clinic. Wish us luck!! :)

Love and prayers~

2009-01-29T19:27:00.000-08:00

WE'RE HOME (in the suite, anyway)!!! ~SAY A LITTLE PRAYER FOR US~ :)

2009-01-28T12:33:00.001-08:00

We are suppose to be outpatients tomorrow....say a little prayer for us!!!!!!!!

2009-01-24T08:12:00.001-08:00

What a week!

Ok....so, we actually were outpatient for a whopping 24 hours before having to be readmitted on Thursday.

We have been treating ANOTHER central line infection over the last week with antibiotics, but when blood cultures were still positive a week later, there wasn't much of a choice other than to pull the infected line. So we are back in the hospital; they've pulled the infected line, and we will have our new line placed on Monday morning....hopefully we will be outpatients once again by Tuesday (assuming all goes well). Jude could very well get line infections while not in the hospital, but his chances of infection are higher while in, so we REALLY want to get back to the suite asap. These line infections can cause real problems, and can become difficult to treat. We are ready to focus solely on eating....not infections!

Speaking of eating, we are currently at 22cc's/hour. We've not been able to make huge steps forward (only baby steps) mainly because we've had to deal with this infection....so hopefully we can really get things moving after the central line mess is taken care of. BUT we ARE eating....and that's grand!!

Thanks for your continued prayers and support. Love and prayers to all~~

2009-01-18T10:59:00.000-08:00

We've made it to 20cc's/hour.....and still cruising right along!!

We'll need to get somewhere between 40 and 50cc's/hour before we are considered to be back at "full feeds"....so we still have some work to do, but as we increase formula feeds, we decrease TPN amounts...once we reach full feeds it's GOODBYE TPN!!! As of two days ago, Jude was 11 lbs. and 8 ozs. So, we're growing!!

Our hope is to become outpatients again in the next couple of days.......man, we are ready!!!! But, we've had a really good week and certainly can't complain. :)

Thanks for checking in on us, and for remembering Jude in your prayers.

Love and prayers~

2009-01-13T14:07:00.000-08:00

Still progressing.....

Today Jude is still feeding...and feeding at 15cc's/hour....officially the most he's EVER eaten in his entire little life!! His doctors aggressively increased feeds from 5 to 10 to 15cc's over just a couple of days; now they plan to increase at a slower pace...maybe 1 or 2cc's a day. It all depends on how Jude continues to handle each increase; there are also a number of things that have to be factored into the picture (for example, keeping him hydrated....lots of dirty diapers now that we are feeding his short little gut, a sore bottom, etc....). It's a day to day kind of situation, and it's basically up to Jude to tell everyone what to do next. But 15cc's....we are basically half way to full feeds!!! Quite an accomplishment!

I think they are planning to move us to the pediatric floor tomorrow....that means no more ICU!! And I don't for see having to spend too much time on the floor before being discharged again...hopefully baby boy continues to cooperate...maybe we'll be back in the suite early next week. I hope!!

Jude still has his nasal cannula....but the plan is to remove it tomorrow. His incision looks great...just about completely healed. Again, everything seems to be heading in the right direction today. Oh, and he smiles more than EVER these days...does my heart good, for sure!!!!!

Love and prayers~

2009-01-10T17:09:00.000-08:00

Good news. Good news.

Jude was extubated yesterday....and successfully this time!! It was a much easier event for him than the last try. They removed the vent from the room today which is always a good sign and blood gases have been just about perfect throughout the day. So that's that.

We've also started feeds again today using Jude's new g/j-tube....starting again at 5cc's/hour. Ummmm, fingers crossed, sayin' prayers, and everything else we can possibly do to get this going. Feeling hopeful.

We also discovered today that Jude is CUTTING TEETH!!! He's too little for teeth!!! It certainly isn't making life any easier for him.....but teething ought to be a piece of cake for that little boy!

Today has been one of those days where just about everything is heading in the right direction. Again....fingers crossed and sayin' prayers!

Love and prayers~

2009-01-06T19:19:00.000-08:00

Vomit...

On day two of our feeding adventure, we had a pretty heartbreaking episode of vomiting (while on the vent, mind you). So, we have stopped feeds until after extubation. Which should be Thursday or Friday of this week. The goal is for a Thursday extubation...but we certainly don't want to rush him into anything he isn't ready for; however, he is behaving like JUDE again. He LOOKS so much better, is much more awake and alert, and is even back to smiling (even though he has a tube down his throat). I'm feeling like he'll be strong and ready this time around.

Feeding......The vomiting was probably a sign of it all being a bit much a bit fast. His little gut hasn't had to do much of anything since August, and he's had lots of pain meds and sedatives over the last three weeks which can really slow things down as well. So we'll have to work slowly and carefully to wake his little belly up. They plan to switch out Jude's g-tube to a g/j-tube; the g-tube into the stomach and the j-tube into his small intestines. This way we can feed the intestines directly, but also allow his tummy to remain empty. Hopefully we'll get feed going again soon after extubation. The procedure will be simple...no incisions or anything like that...he already has the opening from the original g-tube.

Sooooooooo......we're trying to work it out, and we know it will require some more time and lots of patience to get this process going, and we know there will be little bumps along the way, but we'll get there.

Today, Jude looks great, and his mother was able to hold him for HOURS this afternoon. AAAAAAHHHHHHHHHHHHHH......it was wonderful.

I will let you how the extubation goes asap. Say a little prayer...please. :)

Love and prayers~

2009-01-03T07:39:00.000-08:00

Just a quick little update for everyone:

We are one full day into BEING FED! Jude's feeds were started yesterday at 5cc's per hour. We start slow and increase a little bit everyday as long as he is tolerating it. So far so good. We even had a diaper that showed "evidence" that things were moving through (just in case you were wondering). :)

As far as the vent goes, I think they plan to just let him ride over the weekend, and begin again next week with the weaning process. We'll get there.

Today......we are looking pretty darn good. We'll take it!!!

Love and prayers~

2009-01-01T12:56:00.000-08:00

Happy New Year!! And let me tell you....we are looking forward to a new year!!!

The past few days have been that lovely little roller-coaster ride Baby Jude loves to take us all on. He's improving, improving, improving...looks good enough to the staff that they think he's ready for extubation on Wednesday. He was extubated that morning, and made it until about 4 o'clock the next morning before having to be re-intubated. He wasn't ready. Of course our worry was that his extubation problems might be related to something that was going on with his belly, but the docs don't think so. They still feel as though his belly is ready. They wanted to try to start feeding him today, but with the failed extubation they are giving him one more day of rest.....and I think they want to try feeding him tomorrow. Being intubated shouldn't get in the way because he will begin his feedings through his g-tube. Obviously we are bummed out over having to be re-intubated, but can handle this set back as long as his little tummy is okay....a few more days on the vent we can deal with. Again, we hope they're right. We continue to send our prayer for Jude Heaven's way.

So they've made sure he's nice and comfy today....letting him rest.....he's definitely "chillaxin'" at the start of this new year.

Here's to a new year and new beginnings!!!!

Love and prayers~

2008-12-28T09:07:00.000-08:00

The last few days have been pretty darn good.....definite improvements. We still have a few hills to climb, but most things have continued to improve.

Jude is off ALL of his blood pressure meds and has been for the past two days. He was actually on three different pressure meds at the beginning of the week so we are obviously quite relieved and impressed over this accomplishment.

Jude's labs look good, too....as of today, there is nothing indicating infection. As far as the leaking goes, we are ten days past the first surgery and seven days past the "repair the leak" surgery....we are all encouraged because he is continuing to get better and isn't getting sicker. If he is leaking, he will definitely get sicker. So everyday that passes where Jude continues to improve, and doesn't get worse, is a hopeful sign that his belly is healing. God, I hope.

Today he starts getting two lasix doses per day. He's swollen again....quite a bit. So they have to get some of the fluid off over the next several days before they can extubate; after that, God willing, he should be ready.

Jude is still on pain and sedative drips, but they have started letting him wake up some. When he is awake, he tries to open his eyes, but it's difficult for him because his eyelids are so swollen...but he tries. He wiggles his little arms and legs all over the place (actually big, fat, swollen arms and legs). The movement should also help with moving some of that extra fluid OUT.

It's so nice to see him have his awake moments. He's been so still for so many days. We've really missed him.

So we keep hoping and praying that the worst is behind us. We know you all are doing the same.....thank you!

Love and prayers~

2008-12-25T04:46:00.000-08:00

Merry Christmas, friends and family.

We are improving. Jude is doing things at his own pace (definitely not as quickly as we'd like it to happen), but nonetheless, he is moving in the right direction.

He still has many positives...blood gases, labs, kidneys, soft belly, etc. He's also able to be touched and handled as needed. Instead of dropping his pressures if he gets upset, they go up slightly along with his heart rate...which is what would typically happen. So that's nice to see.

He has moments where he tries to wake up and work a bit....he gets squirmy and tries to work over the vent. They end up giving him a little more of this or that so that he's not working when he doesn't have to. The more rest....the quicker the recovery. But it's nice for his mom and dad to see him with a bit of an attitude again.

Wishing you all a Merry Christmas...Love and prayers~

2008-12-23T15:09:00.000-08:00

So they continued to fight with Jude's blood pressures Sunday evening and through the night. His pressures would plummet, and would require higher doses of meds...then would sky rocket, and they would come back down, etc...this went on and on. They were able to be controlled and manipulated with the meds, but it was a constant battle. Even through all of this, his heart rate and oxygen levels stayed the same...no trouble there. However, Monday morning he had a really bad episode with pressures, heart rate, and oxygen...all bottoming out....with out going into too much detail, we had a few really bad and scary moments. He could barely handle even having his temperature taken. Once he was recovered and somewhat stabilized, he was then only "handled" when absolutely necessary. He was extremely touchy all morning...showed little bits of improvement by late Monday evening. Last night wasn't too bad....a couple of pressure drops when they would do things like suction out his vent tube, but he was able to recover on his own.

The positives....His blood gases are always really good and is easily ventilated requiring little support; his labs are good; his kidneys are definitely working; his belly has remained nice and soft..swollen, but soft. And today has been much better as far as his pressures go. He is handling being suctioned, and they've even been able to change is positioning here and there without any real trouble. All eyes are on him, but he just might be rounding a corner today. We hope.

Basically the leaking caused him to be septic...these are his body's responses to the bacteria in his blood. They have to control and treat his responses as needed, and let the meds and his little body rid itself of the infection. He does look a little better today; so hopefully we aren't going to take any more steps back and only continue forward.

We kindly ask that you continue to remember our sweet boy (I know, I don't even have to ask)....and have a very Merry Christmas.

Love and prayers~

2008-12-21T19:15:00.000-08:00

Let me go back to yesterday evening....

They decided to transition Jude from the oscillator to the conventional vent. He responded well. Even today, he is requiring very little support from the vent, but nobody is in a hurry to extubate...he's needs the rest.

Back to yesterday...they also performed a contrast scan to check for possible leaking because they were having to chase his blood pressures a bit and were trying to figure out why. The scan did not show a leak. So they decided to open up his sutures just to drain some of the fluid that had obviously accumulated in that area....hoping to give him some relief, etc. Tons of fluid poured out, and his pressures showed immediate improvement as well. But by early morning, his pressure progress had stalled, and his doctors didn't like the fact that he was still requiring meds to control low pressures....they undressed his belly wound again, this time finding "green matter" which looked mostly like stool.....not good. They got him ready for an exploratory surgery and planned to "washout" his abdomen and make any necessary repairs while in the OR.

What they found was leaking at one of the narrowing areas that had been repaired on Thursday. So...they ended up removing about a centimeter of intestine at that particular site and repaired it again. All other areas of repair and reattachment from Thursday's surgery looked "really good". They sewed up the abdominal muscles but left his incision open so that it can drain. It'll heal from the inside out over the next few weeks....Basically we are having to start recounting our "no leak" days....we need to get through the next week without anymore problems. His little belly is just very delicate and has experienced so much trauma that he makes the surgeons jobs very difficult.

The procedure went fairly quickly.....he was back in his room within a couple of hours on the same vent settings as he went in with....and they've been able to wean him some throughout the day. His blood gases are good (obviously...they're weaning), his labs (electrolytes,etc.) have been pretty good, his blood pressures are requiring less meds to control...but he's still requiring meds. He really seems to be stable and holding steady at this point. But we all know what the real test will be....can we keep him from leaking???? Hoping, praying, believing.....

We also got results from his liver biopsy today.....he does have some scarring ...which was no surprise to anyone......his liver damage is still in early and reversible stages....so they were pleased with the results. What will reverse the damage? Food. He can't keep leaking. He needs to start eating. If we can get him to that point, his doctors think within a month he could be completely off of the TPN. He has around 55 centimeters of small bowel left and all of his colon....they were thrilled with those findings. His little belly just has to give us a chance to start feeding it.

Jude is very sedated....they don't want him working very much at all....just trying to let him recover. We haven't given up. We're a little tired but continue to rally around the strongest little boy in the world.

Thanks for all of your love and all of the prayers~

2008-12-21T11:11:00.001-08:00

Jude has been taken back to the operating room this morning for an exploratory procedure. He is having some issues, and they don't really know why.....so they felt the need to look. We could use a few extra prayers today. He is in surgery now.

Thanks.

2008-12-19T09:32:00.000-08:00

Oh, what a night.

It started off fairly uneventful; however, by 10:30pm we were re-intubated. Jude was working way too hard to do it on his own, his chest x-rays were questionable, and he needed the rest. After intubation, he looked really good on the montior, but all of his blood gases were showing really high CO2 levels.....long story short, they thought the oscillator would help....and it did......blood gases are much better today, and they are planning to transition back to the regular vent by this afternoon. That's the plan anyway. We'll see. I really never thought we'd have to see an oscillator again, but here we are.

We feel a little better about the situation we're in after meeting with the doctors this morning. They do not feel any of his current issues are related to anything that could be going on with his belly. They feel good about that. In a nut shell, this was a big surgery for a little guy, and he needs the extra support to help him recover. He just wasn't able to do all of it on his own........but he's still a Superman to his mom and dad.

So we can only hope that they are right, and that we continue to improve. We'll keep you posted.

Love and prayers~

2008-12-17T18:56:00.001-08:00

Tomorrow is our big day! Thanks so much to everyone for all of the well wishes and prayers. We are ready!

I will try my hardest to post an update tomorrow evening.

Love and prayers~

2008-12-13T10:53:00.000-08:00

We're "home" again!

Jude's infected central line was pulled out on Tuesday. He was given an IV and put on fluids until Thursday. They went ahead and put in a permanent line Thursday instead of a temporary. The procedure was quick and easy, and we were discharged once again on Friday. We've had negative cultures for the past three days. Jude seems content; we're thinking that he's feeling good. So we have him all to ourselves again.....at least until the 18th....which is just around the corner. Butterflies.

Again, the surgery will take place on Thursday, December 18th. If all goes well, and we don't encounter any surgery related problems, Jude will begin eating approximately a week post surgery. We were told our hospital stay would be from a week and a half to two weeks (if all goes well). After that, we'd become outpatients again and intestinal rehab will continue. The better Jude does with his feedings, the sooner they will send us home; so it all depends on what baby boy can do. I think he's ready!!

When we asked how long they thought we'd be in Nebraska, Brandi, our nurse coordinator, said she thought March was a fair guess...maybe a little sooner if Jude cooperates, and of course, could be a little later if things don't go as smoothly as we all hope. Either way....we'll get to experience winter in Nebraska.

Speaking of winter......SNOW IN SOUTH LOUISIANA!!!!! A number of people text and emailed pictures of the "snow day". My heart kind of hurts that I missed it. It has already snowed here, and much more is on the way, but it just doesn't seem as special. We sure can't wait to be back home....there's no place like it.

Happy holidays and love and prayers to all.

2008-12-09T20:41:00.000-08:00

AND we are inpatient again!

But the good news is that it should only be for the next couple of nights...and then outpatient again until the surgery on the 18th.

Jude has done really well over the past week. He is acting like he feels well...no temperature or real fussiness, but we can't get rid of the infection. They ended up pulling out his central line today, and are putting in a temporary line in the morning. A permanent central line will be put in place again on the 18th. They decided it needed to come out now before he really gets sick. So here we are....back in.....it was very sweet while it lasted. But I plan to keep my chin up and just hope it is short-lived.

Other news........The plan was to "beef" Jude up before his surgery.....and they are doing a great job of it. He weighed in at 9 pounds and 11 ounces today. Big boy!! He has an extra chin....can you believe it? My micro-preemie has a double chin! He has decided once again that he loves taking the bottle...he doesn't lose a drop. He's ready to eat! Jude also sleeps all night. He really does...doesn't even wake up when I get up to change his belly dressing or start his antibiotic....he just sort of grunts through it and goes right back to sleep. Which means he doesn't sleep a whole lot during the day...short cat naps only....and he likes to be entertained...constantly. So we do lots of things....read, sing, play, take stroller rides around the hospital, and his most favorite thing of all....rock! He loves to be rocked!!

This is really a great place....and the people here have taken care of us. Jude already has a fan club......the ladies love him. So does his mommy~~~

Love and prayers~~

Thursday-December 4

2008-12-03T14:59:00.001-08:00

We are still "home" and have managed to stay out of the hospital. Yay!

Let's see...
~Jude is getting 10cc's of formula every 2-3 hours. He is taking it by bottle, and sometimes he likes it...other times, not so much. The point is just to keep practicing and reminding him that his mouth is used for eating because eventually, HE WILL EAT!!

~He is a little over 9 pounds as of his last weigh-in...so we are gaining!

~He is still jaundice with elevated bilirubin levels, but those levels have been trending downward over the last week and a half. Again, all liver function tests look normal.

The plan is to keep him well before his surgery on the 18th. If all goes well, approximately a week post-surgery our feeding journey will begin. Feedings will be by both bottle and g-tube....will also focus on weaning Jude from the TPN. The IRP team feels like they'll be able to get that done rather quickly. TPN is the culprit....it causes the liver issues, and because TPN is administered via a central line, we face the constant risk of infection.....so we'll celebrate for sure once we say goodbye for good!!!

We went through a transplant evaluation over the last week....they wanted to see if it would be necessary to put Jude on a transplant list (either small bowel, liver, or both). Some are put on transplant lists "just in case" things get ugly and it becomes necessary in the future to undergo a transplant. We did not qualify. That's good news!!! They feel really confident that he has enough small bowel to work with and that his liver function is normal.....the surgery on the 18th should do. Thank God.

It is still cold. We've been able to see and enjoy a couple of snow falls......from the windows of our very warm suite!! It was nice.

Love and prayers~

2008-12-01T21:22:00.000-08:00

Jude is back in the suite!! He has been "home" with us for a total of four hours now.....so far so good!

I will update again in a day or two....we'll let you know how things are going after a few days of being official outpatients.

We have our first clinic appointment tomorrow (we will have one on every Tuesday). This is our "check-up" day which is all a part of the intestinal rehab program (IRP).

Wish us luck!!

Love and prayers~

2008-11-27T17:24:00.000-08:00

Happy Thanksgiving!!

Sooooooooo, yesterday we were actually discharged.....we became official outpatients at approximately 6:30pm. We actually were able to bring Jude back to the suite with us, and were very excited about spending Thanksgiving all together in our "home".

Here's the rest of the story.......by 8:30pm Jude had a temperature of 100.8; we immediately took him to the treatment center downstairs, and by 9:30pm he was readmitted into the hospital due to a central line infection. They started him immediately on an antibiotic.

Needless to say, we were up all night with a very fussy and uncomfortable baby boy AND worried to death. He very obviously didn't feel well. The good news is that he seems to be feeling better today and is not currently running a fever. Central line infections are scary because they can be devastating very quickly, but we're thinking that because he's feeling better and not getting sicker, that we've hopefully tackled the infection in enough time.....and if for some reason he would get sicker, we'd find ourselves back in the operating room for a new line. Obviously we are hoping to avoid having to go that route.

The plan is to keep in the hospital until we have resolved all central line issues. Then maybe we'll have some outpatient time together before the December surgery.....it has been scheduled for December 18th at 7:30am.

We are feeling thankful that Jude seems to be better today and hoping all of you have had a wonderful Thanksgiving holiday.

Love and prayers~

2008-11-25T14:33:00.000-08:00

Here is the plan as of today...

After Jude's second intestinal study today, "the team" believes that he has enough small bowel to go ahead and go back in to reattach. They can't give an exact number, but did say that he had several loops of small bowel....which is "Jackpot" around here. An exact surgery date has not been scheduled, but they plan to wait approximately two weeks from now before going back in...so we're looking at mid-December (probably the week of the 15th). They feel like the risks of going back into surgery so soon after his last surgery don't outweigh the long-term benefits.

About his liver......his bilirubin is still quite high, but all liver tests and ultrasounds are normal....liver, spleen, pancreas are all normal, so they feel comfortable basically keeping things the same until surgery time.....but in time, TPN and no feeds will really begin to take its toll. So they want to put his belly back in order, sooner than later, and start feeding as soon as possible. They are also planning to start some small feeds over the next few weeks before surgery hoping this will help lower bilirubin levels.

Even more good news.....they are working on making us outpatient over the next day or two. We will have the pleasure of Jude actually living with us in our suite at the Lied Transplant Center. We will have a home health nurse visit us daily and teach us the ways of administering TPN, etc.....and clinic visits (in the hospital) on Tuesdays for routine check-ups......we'll just follow the routine that they will set up for us until surgery time.

Scary and exciting.......but mostly exciting. ;)

And again, Jude has to cooperate. We're just going to keep praying, and wishing, and hoping.

On Thursday, Jude's first Thanksgiving, we should have him with us in our suite. Oh my!!

Love and prayers...and HAPPY THANKSGIVING!!!

2008-11-21T12:02:00.000-08:00

Well.....we're here!!!!

We are still in the beginning stages of tests, assessments, studies, labs, etc. So I'm limited as to the information I can offer at this point; However, we were able to speak to the surgeon this morning, and he thought that we would have a definitive plan of action by Tuesday or Wednesday of next week (after all of the necessary assessments have been completed). He was great! He stated that he had "high hopes" for Jude, and based on the information he has gathered thus far on Jude, he seems to think this is Jude's "window of opportunity".......to stop and reverse liver damage and to get his belly "anatomically back in order".

They are completing a series of intestinal contrast studies today so that they can have a clearer picture of what is going on in Jude's belly....and to try and assess how much intestine he actually has left. It sounds as if they want to put him back together within the next couple of weeks...and to try and feed him a week or so after that. OF COURSE, that's if Jude cooperates completely.....AND WE ALL KNOW THAT ANYTHING CAN HAPPEN when it comes to Jude. BUT...the tone and vibe today was very positive.

Michael and I are staying at the Lied Transplant Center.......we have our own private suite; it's just two floors above Jude's hospital room. The suite is not only close to Jude, but is also connected to the hospital and keeps us from having to go out in the Nebraska weather......can you say 12 degrees? Yes, that was the temp this morning!!!

We are feeling good about Nebraska and are so thankful that the New Orleans staff helped to get us here....in less than two days!!!! I wish we could tell you how long our stay will be, but only time will tell. Our plan is just to give Jude whatever time he needs.

We will let you know "the plan" once we have it!

Love and prayers~

2008-11-18T20:08:00.000-08:00

Alright friends.....we have some news.

I will start by saying that Jude is well......so DON'T panic. :) The newsflash......Thursday morning we (Me, Michael, and Jude) will be flown to The Nebraska Medical Center in Omaha, Nebraska. As mentioned in the last couple of updates, Jude's liver function is of concern due to the extended need for TPN. Because we are still TPN dependent and will be for several weeks more, we have to get Jude to a place where they can preserve his liver function and possibly reverse the damage that has already been done (plus take care of his belly). In Nebraska, we will be with doctors, surgeons, nurses, and staff that deal only with patients that have intestinal or "short gut" issues such as Jude. After speaking with some of the staff in Nebraska, it seems as though they feel pretty confident that they can help. They plan to tackle the liver issues first, and then formulate a plan for his belly. Nebraska seemed very optimistic about the things they have to offer Jude. We are THRILLED that they are taking us....and doing so very quickly.

For those of you interested, if you do an internet search on "The Nebraska Medical Center", you will easily find the center's website. "Intestinal Rehab" is more than likely what we'll be diving into once we're there. The website offers plenty of information about it. And of course, this is new to us....we'll learn as we go.

We will need a few days before we can get back to blogging....but I WILL continue to blog....so stay with us. We are very anxious tonight, but really do feel like this is an answer to many of our prayers.....a new beginning for Jude. He deserves it.

~~~~To the New Orleans Children's Hospital NICU (Jude's other family)........we love you. We will miss you. Thank you for taking care of us, and for loving Jude in all that ways that you have. You all are doing the work of HIS hands...no doubt. We will never EVER forget.~~~~~

Love and prayers.

2008-11-17T19:46:00.000-08:00

Quick update.....

The plan is still to complete a number of intestinal studies this week to get a better/clearer picture of what Jude's little belly is up to these days. These should be able to determine whether or not it's safe to start feeding him again or not. There is a possibility that he won't be able to be feed until after the next surgery. That's a pretty good wait. Which leads us to the next big concern......long term TPN use.....not good, but unavoidable. It's very hard on the liver, and we've already seen a jump in bilirubin levels over the past week. Jude gets yellower by the day. Feeds, even small feeds, help with this issue. So it would be great to get a little food in the belly...it won't benefit us too much nutritionally, but would hopefully help with liver function.

About going home.....they are trying to get us there......if I had to guess, I would say maybe sometime next month. Possibly for Christmas. Wouldn't that be nice?

Love and prayers~

2008-11-14T19:21:00.000-08:00

Our Jude is doing well.

His incision looks so much better....there has been much improvement over the last few days. We've been off of the antibiotics for five days, and we are still fine. He just seems like he feels better overall. He looks like he's been dipped in mustard (jaundice), but he's great. :)

Next week they are planning to do a few intestinal studies just to take a closer look at what is going on in his belly since the last surgery.

The plan is to send the Trahans home with the TPN and lipids....we'll get a little home health here, some physical therapy there....we'll have all the necessary help. Soooooooooooooooo, depending on next weeks findings and the continued overall healing of Jude's belly, it looks like we'll be home sooner than later. We can't be exact at this point, but we know it's coming. Exciting....and a bit scary..but more exciting than anything.

Speaking of home.....for those of you that don't know already, Michael has taken a job with the University of Louisiana Lafayette. Home is now in Lafayette. We plan to go to Lafayette once discharged. We are making all of the necessary arrangements. Baby Jude will be a Ragin' Cajun for sure!

Hopefully after next week we'll know more about discharge. We'll BE SURE to let ya know!

Love and prayers~

2008-11-11T16:58:00.000-08:00

We have discontinued all antibiotics....we are back to just TPN and lipids. Yay! Now we just have to stay well.

Jude's incision/wound is looking better everyday. The staff worked hard to get his belly dressing just right.....much less skin irritation and nice healing. Almost there.

Many have inquired about Jude's weight....he is weighing in at over eight pounds these days....we probably have to give up a few ounces due to abdominal swelling/fluid, but he is definitely growing. Imagine how big he would be if we were actually feeding him!! :/

He is a precious little creature. Thank you for checking in on us. Thanks for the visit Aunt Kathy and Uncle Wade (and for the cookies).

Love and prayers~~

2008-11-08T17:24:00.000-08:00

Not too much to report on........Jude's continuing to recover without anymore big surprises.

One of his antibiotics was discontinued yesterday, and the plan is to discontinue the rest on Monday....fingers crossed.

His incision/wound still has quite a bit of healing to do but is also looking better each day. It is dressed with gauze and an ostomy bag is kept over it. Ostomy bags are difficult......they leak, and I'm sure can be uncomfortable, but our options are limited. We just have to get through it. He's being a big boy.

Love and prayers~

2008-11-05T20:34:00.000-08:00

Not too much has been going on over the last few days......Jude has done well.

We've just added a few pics for fun......Jude is much more awake and alert these days. He looks really good.

Thanks for continued prayers.

Always~

2008-11-02T17:20:00.000-08:00

Jude was extubated today.......I wish I could say "FOR THE LAST TIME", but I don't think that will be the case. However, today we were very GLAD to once again see the ventilator taken away.

We've had a pretty good weekend....everything still looks decent.

My wish is still that we can be home for Christmas. Jude's surgeon did say that once we've dealt with the infection and Jude's belly has had time to heal, that we could spend sometime at home before the next surgery. We would be taught how to give TPN (artificial nutrients) and all the other necessities at home. The next surgery won't be until January or February.......and a change of environment would be great for all of us! Of course, this can happen only if Jude continues to recover without anymore surprises.

About the next surgery.......we've been told that it will be "complicated" and that they will have to be "creative". We aren't really sure what that means exactly at this point, but are trying to remain more focused on the here and now.

We have seen miracles happen with Jude.....we're just going to continue to ask for a few more. :)

Love and Prayers~

2008-10-31T16:52:00.000-07:00

First, let me start by saying "Thank You" to everyone for your continued support and prayers for Jude (and us). They are being heard......I don't want to sugar coat Jude's situation, but I can say that he is doing much better than anyone expected.

His vitals are good, blood gases, etc. etc. He was knocked down, but we think he's trying really hard to get back up.

Again, no surgery will be performed for many weeks, but the immediate concern with infection seems to be under control.

Jude is still intubated, but plans for extubation are in place...maybe even by the end of the weekend.

He's an amazing young man.

Love and prayers~

2008-10-28T17:14:00.000-07:00

As many of you now know, we are sick again.

By Monday morning a slight temperature and blood work showed evidence of infection, Jude's belly was more distended, and he was obviously uncomfortable. He was taken down to radiology so that they could do a couple of intestinal studies to try and find the cause of the problems. One of the studies showed a "leak" at the site of intestinal reattachment. The surgery, just one week earlier, had not done what we needed it to do. Jude was taken to surgery within the hour.....because his belly and intestines were too inflamed, it was impossible to bring the ostomies back up so a sort of drain was created to help keep the abdomen drained......and we are now once again fighting a very serious infection.

We are back to "watching and waiting". We stayed with Jude all night expecting it to be a rough night for him. It actually turned out to be very uneventful, and today has been just about the same. He seems to be holding it together, but we are again at a very critical place and will be for the next week or so.

Our hope is that he can beat the infection....he's done it before, right?!!! If and when we get across that bridge, then we will reevaluate what needs to be done with Jude's belly. Any future reattachment surgeries can only be considered after a 10-12 week recovery period.....so, we have some time.

As of today he is back on the ventilator...minimal settings. He is being kept very comfortable with pain meds and sedatives. His vitals and blood gases have been good....his labs even looked better today. Jude's belly is swollen obviously, but he isn't anywhere near as swollen as he was after his first surgery back in September. He is giving us hope.

He is our little super man...with a heart and a will to fight bigger than any we've ever seen.

Thank you for continuing to pray for Jude.

Always~

2008-10-24T19:35:00.000-07:00

EXTUBATED!!!! Thank God.

It was a good day. Jude was taken off of the ventilator and only needed a nasal cannula for a few hours. He is doing really well.

He looks good.....very alert and ready to WAKE UP!!!

Now we just continue to wait for his little belly to heal, and hopefully sooner than later we will start feeds again. This will definitely be our next big adventure....and wishing that all other "big adventures" don't have anything to do with a hospital! :)

Love and prayers~

2008-10-22T17:08:00.000-07:00

Jude continues to do well post surgery.

They began weaning from the vent today. His labs, levels, and gases have been pretty good. So they plan to continue weaning tomorrow, and hopefully he will be extubated FOR THE LAST TIME on Friday morning.

He's a bit swollen but nothing off the charts. For the most part, he's doing really well.

They've continued with his pain meds so he's been comfortable and is resting peacefully.

I will update again post extubation.....hopefully Friday!!

Love and prayers~

2008-10-20T17:48:00.000-07:00

Jude did well during the surgery. He was reattached, and the surgeon said that his bowel was viable and had very good blood flow. Regarding Jude's recovery.....he feels "optimistic".

Typically, this type of procedure requires seven to ten days for healing....before feeding can begin. The biggest concern for Jude during this next week will be intestinal leaking at the site of reattachment. Hopefully we won't have to deal with anything along those lines, and after our 7-10 day grace period we will be able to begin feeds. Feeds will start all over from the beginning....very slow and careful.

It was also recommended that Jude have a gastric feeding tube (g tube) put in while in the operating room. More than anything, we are hoping that his little belly will "step up" and do what it needs to do when the time comes....but just in case they need to play "catch up", we have the g-tube to help pick up the slack we might face with bottle feeds alone. Again, we will only know how necessary the tube will be once we start feeds. At this point....we just don't know. We only know that a significant amount of small bowel was removed with the initial surgery....so obviously we could run into malabsorption issues, etc. The good thing about the g-tube is that we can go home with it....if he needs this kind of help long-term, then we can give it to him at home.

Jude was intubated for the surgery and hopefully will be extubated by tomorrow morning. That's the plan. His vitals are good...blood gases are good. His eyes and face are a little puffy, but overall he looks good. Obviously, he is getting medication for pain......nobody wants to see him uncomfortable.

As you can imagine, it was a tough day...but so far so good. We know many many of you offered up prayers for Jude and for us throughout the day.....we could feel them and we appreciate them.......so very much. Thank you. Thank you St. Jude.

More tomorrow....
Love and prayers~~

2008-10-17T21:12:00.000-07:00

Ok......Monday (October 20th) will be the big day. Jude is being "reattached". We are very anxious about the surgery but also READY for this next step. The surgery should not be anything as traumatic or dramatic as our last experience...it should be a matter of just attaching the intestinal ends. It doesn't look like anything else needs to be done, and we are hoping that there won't be any "surprises". Hopefully by Monday we will be able to say good-bye to ostomy bags FOREVER (they aren't fun), and that we will be on the road to a complete recovery.....and just maybe we can go home!! Our goal is to be home by Christmas....that's just OUR goal. It really all depends on how Jude's little belly handles feeding after the surgery. He will have to heal before he can start eating again, and then the feeds will begin very slowly....basically starting over. We are praying that this will be our last "start over".

I will plan to update Monday evening after the surgery. We humbly ask that you remember Baby Jude on Monday.

For any novena prayers interested.....if the St. Jude novena is started on Monday, the day of Jude's surgery, it will end on the feast day of St. Jude...pretty cool.

Love and prayers~

2008-10-14T17:30:00.000-07:00

Today was a big day.....

We took a closer look at Jude's belly today through a lower gastrointestinal examination....which is basically x-ray pics looking for signs of strictures or blockages in his intestines. There weren't any!! Which, by the way, is nothing short of amazing. In a situation like his, where he had four sections of intestines that had to be pieced and stitched back together, you often have "issues" with scar tissue, etc. So, WOW, he continues to amaze us with his progress!

Still no date for the surgery.......if it isn't next week, it'll be the following week at the latest. That's our understanding as of today.

We will post more details as we get them.....NO change with his last echo.

Love and prayers~

2008-10-12T17:09:00.000-07:00

What can we tell you about Jude, the dude?

He's at 10cc's every three hours with his bottle. He's a professional...loves his bottle.

There was talk this weekend about "putting him back together". Hopefully I can be more specific with a surgery date within the next couple of days.

We had a nice and peaceful weekend.....Jude seems to be more content everyday. I think the 10cc's are giving him at least a tiny bit of satisfaction.

We also have an echo tomorrow....we'll let you know.

Love and prayers~

2008-10-09T16:59:00.001-07:00

Just a couple of things.........

Jude is now getting 5cc's every 3 hours..and he usually doesn't let a single drop get away from him.

He also had his LAST eye exam on Monday. He passed and doesn't need anymore follow-ups!! Yay!!

His weight is around 5 pounds and 8 ounces. He's looking good.

We still don't have an exact date for his next surgery....but things are looking good, and we feel fairly certain it will be this month.

He's an angel.

Love and prayers~

2008-10-07T20:27:00.000-07:00

Today was a special day.....Jude's original due date!!!! It was a "Happy #2 Birthday!"

He is still doing really well....up to 3cc's every 3 hours and is getting better with the bottle.

We pretty much hold him all day....and we love it!!!!!

Thanks Ya-Ya and Jim for the visit....and to Uncle Danny and Aunt Pam for the "goodies".

Love and prayers~

2008-10-05T17:23:00.000-07:00

So far.......smooth sailing!

Jude is continuing to do well post extubation.....still hasn't needed any help from a nasal canula.

He is up to 2cc's every three hours and is taking it by bottle. He was a little shocked with his very first bottle....almost like he couldn't believe he actually sucked something out of it, unlike the empty promises of his pacifier. It's a very tiny amount, but it still takes a little time to get it down..mainly because he's on a predigested formula that smells and tastes horrible. He isn't as excited about his feeds as we thought he would be....but at least he's getting a little something. His attitude has improved over the last few days. Oh, we still have a few fits here and there, but for the most part he's handling it well.

Jude's weight has leveled off....he's somewhere around five and a half pounds. He's looking a bit yellow (skin and eyes), but of course is still the most beautiful sight these eyes have ever seen!!

Thanks for your continued prayers and support.

2008-10-02T17:37:00.000-07:00

The past couple of days have been good ones.

Jude has done really well since being extubated......and he only had the nasal canula for one day. He's back to doing it completely on his own and isn't having any problems with it.

He is finally feeling well enough to realize that he isn't being fed. He's definitely hungry. That's the hard part. He's so much better in so many ways, but he is understandably very irritable at times. BUT, it's what we have to do. They plan to actually start slow feeds tomorrow (maybe 1cc every 3 hours or so). This is just to "stimulate the gut". This won't really benefit him nutritionally because he hasn't been reattached...but is still receiving all artificial nutrients and plenty of fat. The reattachment surgery hasn't been scheduled, but the staff is talking about mid to late October (mid October being the absolute earliest they would even consider it). So, we'll see.

Jude is weighing somewhere around 5lbs/5ozs. We aren't quite sure how much of this is still fluid, but he's probably close to being rid of all of it.

We have many bridges to cross still, but Jude sure has made us proud! He's a tough little guy!

Love and prayers~

2008-09-29T16:28:00.000-07:00

WE HAVE BEEN EXTUBATED!! WOO HOO!!

Jude was taken off of the ventilator this morning. He's doing very well with the transition so far.

He has been very alert and awake today.....my fear is that soon he will realize that his little belly is empty. I'm sure that won't go over well with Jude.

Tomorrow will be four weeks since Jude's surgery, and I have to say that he has come a very long way. Today was a big day for us.

Lots of love and many prayers continue to get Jude over every obstacle. Thanks to everyone for everything.

xoxoxo

2008-09-28T17:07:00.000-07:00

Well......we are on very low ventilator settings....hoping tomorrow will be the day they extubate. Jude is no longer sedated and is more alert all the time. He is READY to get rid of that tube. Praying, praying, and praying that it happens tomorrow!!!

He has continued to improve and looks better everyday.

Special thanks to our visitors this weekend....Anne, Danny, Patricia, Danny, Carla, and the Caswells....and to nurse Patty for Jude's special gift.

I will update tomorrow....hopefully with great news!

Love and prayers~

2008-09-25T17:34:00.000-07:00

Just added a couple of new pics. It was a great day!

2008-09-24T16:46:00.000-07:00

Another good day.

This is actually the second day in a row that Jude has not had to have a platelet transfusion.....really good news. Certainly, he'll need one over the next day or so, but this is definite improvement....tells us more is falling into place.

He is still somewhat swollen in his "trunk", but most of the fluid has found its way out. He is getting that yellow-look about him, but for the most part he looks great....like Jude!

Not much else to report on today.....We miss everyone.

Special thanks to Gloria for the St. Jude medal and chain for baby Jude...SO SWEET AND SO SPECIAL! And a special thanks to St. Jude, for continuing to pull us through all of the impossibles.

Love and prayers~

2008-09-22T19:49:00.000-07:00

Our little man is just moving right along. He is looking better and better everyday.

Jude is still requiring some transfusions, but not as often as he has been for the last few weeks. His incision looks so much better and is healing beautifully. His blood gases have been pretty good, and they continued to wean from the vent throughout the day. We are looking forward to getting him off of this vent, too!!

Jude had a follow up eye exam today....the doctor doesn't foresee any future problems with his eyes. He also had a follow up cranial ultrasound...it was normal...and his echo was today, but we haven't received the official report. I'm sure that will be given to us tomorrow.

The road is still long for us with Jude and his belly, but we are excited about the progress he has made over the last week. The surgery was hard on him, and it's such a blessing to see him recover.

The best part of the day....was getting to hold Jude. I haven't been able to hold him for the last three weeks...We needed it, both of us. It was a short but VERY sweet moment. Looking forward to the next.

Love and prayers~

2008-09-20T16:59:00.000-07:00

The past few days have been really good for Jude!

He is looking more and more like our baby JUDE everyday. He has really started to get rid of the fluid...not completely but we're getting there. Once we can get most of the belly fluid out, then we can start REALLY weaning from the ventilator. He is still requiring platelet transfusions, but his count is trending upwards a bit more each day.

Of course, we have a long road ahead with his belly..the ostomies, reattaching, future feedings, etc.....But he sure has come a long way over the past two and a half weeks. Jude is even flashing an occasional smile!! I don't think I need to try and explain what that does for us!!!!

Prayers are being answered everyday~

2008-09-18T16:39:00.000-07:00

What a day!

The surprise for the day was getting to the hospital this morning to find that Jude was switched from the oscillator to the conventional ventilator. Yay! Big step. Up to this point, he has tolerated the switch nicely. We all hope he can keep it up and NEVER have to see the oscillator again....notice the pic of Jude's nurse, Patty, and respiratory therapist, Terry, removing the "BEAST" from his room. So happy. Oh, they also made a special gift for me from Jude.....his prints....so sweet!!

Jude also showed some improvement with his platelet count this morning...he is still requiring transfusions and will for a while, but he did show an increase. His urine out-put is also picking up daily.

I find that Jude is more alert and active with his arms and legs. We are hoping that this movement will allow him to shift some of his fluid around and get it out!! He's still quite a puffy little guy.

The doctor that performed Jude's surgery said that in a month or so he would evaluate when to reattach the intestines. Jude will be on artificial nutrients until after reattaching. There are "issues" that go hand in hand with this kind of care...jaundice, yellow skin and eyes, liver issues...but this is the only way to give him what he needs to grow and survive right now...so we'll just have to get through it!

Giving thanks for a great day~love and prayers~~

2008-09-16T17:12:00.000-07:00

Hello, everyone.

Jude seems to be in a stable condition these days.....fingers crossed that we continue down this path.

He has shown improvement in many ways...electrolytes, blood gases, weaning from the oscillator, his color, etc. On the other hand, he is still requiring two platelet transfusions a day which could be a sign that his little body is still fighting infection OR it could just be that SO much has taken place in his body that he needs more time to get his count up....but we are hoping that soon he requires less transfusing as his count goes up on its own. That will be a really positive sign we're all waiting for. He is still really swollen...but still unbelievably precious! :)

We have a feeling he's going to get through this.....he hasn't stopped showing us his fighting spirit. He's a strong one!

We miss everyone. Thanks for continuing to check in on us!

Love and prayers~

2008-09-14T17:11:00.000-07:00

Jude has behaved these past couple of days.

It's still basically the same situation.....having to play around with his electrolytes on occasion, very slowly and carefully weaning from the oscillator when his blood gases indicate the need, still constantly praying for no infection, and to start getting rid of some fluid (he looks like a balloon). The ostomies look healthy, and his incision is showing signs of improvement and healing.

We can only hope that he continues to stay away from any other potential disasters...we are still at a place where anything can happen but are so very grateful that we've managed to stay away from those things for this long.

Jude still seems very comfortable. He has moments of being very awake and alert....He looks at us as if he's questioning what has been going on for the past two weeks.....physically, because of the fluid and swelling, he doesn't look all that much like baby Jude, but when he opens those sweet little eyes they are still the same.

Thanks for your continued prayers and support.

Love to all~

2008-09-12T17:10:00.000-07:00

Well.....it was a good day. Jude's blood gases and labs looked wonderful last night and all day today. A definite improvement.....this doesn't mean we are out of the woods by any means, but it's certainly a positive.

His tummy is still extra swollen from the fluid....patience. We are just hoping that we can continue to "maintain" and begin to heal.

Jude seems to be comfortable. He also moved his arms and feet quite a bit today....which might help to start moving the fluid around and out.

We haven't posted any new pics of Jude because, frankly, he wouldn't appreciate it when he isn't looking his best....but we did post a few of his friends "Righty"(the elephant) and "Wilson" (the sock doll--who has been with Jude from day one) that are being used as foot props.

To all Ike evacuees.....BE SAFE.

THANK YOU...to the crew at Michelle's Salon for my bag of goodies....SO AWESOME!! I love ya!! AND THANKS TO AUNT LIZ, TOO!!

Love and prayers~

2008-09-11T17:18:00.000-07:00

Hello, everyone.

Jude is still "hanging in there". He has actually shown a good amount of improvement with his labs and blood gases...occasional tweaking is still necessary every now and then.

His belly is still very swollen and holding on to lots of fluid. Again, the fluid puts pressure on his chest which makes it harder for his lungs to function....that's why keeping him ventilated is a must at this point. His actual lung tissue isn't the issue; the issue is the fluid. Hopefully, sooner than later, we can start to see his body rid itself of the fluid, and then we can continue weaning him from the ventilators. One of the surgeons reminded us today that the entire process of healing and losing the fluid will take quite a bit of time and patience.

The ostomies are still looking good. The incision is ugly and looks painful, but the doctors and staff see to it that Jude is as comfortable as possible.

Thanks to everyone who is reaching out and praying for us and Jude. Special thanks to Dr. Storment's office in Lafayette for the care package.....so sweet, and we love you for it.

Love and prayers~

2008-09-09T20:25:00.000-07:00

We had an OK day today.

For the most part, everybody is still working on the same issues with Jude. Still no MAJOR changes either way.

His blood gases and electrolytes still look pretty good. The infection issues are most worrisome and could be devastating......so our prayer is for his little body to come up with what it needs to fight off all the possibilities.

Jude is still sedated, so for the most part he is comfortable and resting well. He has a team of remarkable people taking care of him. We are so thankful.

Thanks to everyone for the words of encouragement......Our plan is to love and pray Jude through this....the same thing each one of you would do for your own...but we do thank you.

Love and prayers~

2008-09-08T19:20:00.000-07:00

Hello.

The main concern for Jude at this point seems to be fighting off infection or possible infection...in his belly, around his incision, and all of the other places that are capable of getting infected. He, of course, is getting antibiotics, but is now getting a daily dose of a special medication that hopefully will help to "recruit" white blood cells to aid in this process. His count is low.

His little belly isn't so little these days. It's very swollen. The fluid, the swelling, the pressure on his chest etc., has kept him at the same vent settings for the past day. His is still on the oscillator.

The electrolyte issue isn't perfect, but definitely looks pretty good in comparison to the first few days post surgery. His blood gases also looked good this evening.

So, we watch, and we wait, and we pray for improvement.

He's still the absolute most beautiful thing we've ever laid our eyes on. He's our little hero.

Love and prayers~

2008-09-07T17:37:00.000-07:00

Today was a bit rough...to say the least.

Jude appears to be retaining more fluid today which is causing a few problems. The fluid tends to put pressure on the diaphragm which, sort of, squeezes the heart, which interferes with circulation, which hampers kidney function...I think that's how it works....so his urine out-put was minimal for the most part of the day. The other issue was his surgery incision. It's quite red and ugly.....looking infected. It's being monitored, and hopefully the antibiotics will allow it to begin to heal. So we wait.

The good news........by late this afternoon Jude started tee teeing....I would say a significant amount (at least compared to what he had done, or not done, throughout the day). Also, all of his levels seem to be in a good place right now (potassium, sodium, glucose, etc.). The staff has spent a great amount of time "tweaking" all of these things, and as of the last labs, they looked pretty good. As mentioned before, the surgeon didn't like the looks of his incision, but he did think the ostomies looked fine and even better than yesterday. He did not think that anything alarming was happening internally with the bowel. We continue to look at the positives along with the negatives.

Jude is still at a very critical place with this battle.....but he's still battling, and that's all that really matters.

He is in God's hands...and we will continue to ask for a few more miracles.

Love and prayers to all~~~

2008-09-06T16:41:00.000-07:00

Hello, everyone.

As many of you now know, our sweet Jude has become very sick. On Tuesday, 9/2, we dicovered that Jude had developed NEC (Necrotizing Enterocolitis), a very serious problem that develops when a section of the intestines becomes weakened and damaged. This allows for the bowel wall to become infected. A belly x-ray also showed a bowel perforation, or tear, which is a life-threatening situation. Jude was sent immediately to the operating room. Nearly half of his small intestines had to be removed. He has two ostomies. This type of surgery is obviously very traumatic for a little man such as Jude, and at this point anything can happen. NEC usually appears within the first ten days a preemie begins feedings. We truly thought we were well past this point. This is a massive blow, and Jude is having to fight harder than ever before.

We are four days post surgery. Jude's condition will remain critical for the upcoming days, and NOBODY will promise us anything. However, he IS showing signs of improvement. Everyday is a little better than the day before. Because they basically "rinsed" him out during the surgery, there are SO many things that were knocked out of balance, and the everyday fight is to continually tweak until all of these things fall back into place (sugar, sodium, potassium, etc etc etc). Because of the dehydration and leaky vessels, he became very swollen, but has started to get rid of the fluid...physically, he looks much better. Jude probably experienced a bit of kidney shock/failure after the surgery, but has picked up his urine output tremendously. They have weaned him quite a bit from the oscellator, and hopefully will be put back on the conventional vent over the next day or two. Then weaning from that vent will begin.

So many of you have let us know that the "Jude updates" have become a part of your daily routines. This touches our hearts deeply. We will do our best to keep you all informed via the blog....it more than likely won't be everyday, but as often as possible.

We are constantly reminding ourselves that he is a survivor, and it is of no coincidence that he was given the name of the saint of the impossible....Jude. We continue to pray for him to overcome what, at times, seems impossible. We know that you all are praying for us and our sweet boy, too. We feel it. We feel the support.

Much love and many prayers to all~~

2008-08-31T12:50:00.000-07:00

We are at the hospital. Everyone is a bit anxious, but it's business as usual among the staff.

For those of you still tuning in to the blog, we know many of you cannot because of the evacuations, but try and tune in to CNN/Anderson Cooper's 360 tonight....you'll see some familiar faces. Baby Jude will make his debut on national television. If it happens to air tomorrow, I'll try and post that, but for now we think it will be tonight. We don't have a time as of yet.

Jude's doing well....

Take care and be safe.

2008-08-30T19:31:00.000-07:00

Hello, All!

This could be our last update for a while. Of course, it all depends on the storm.
The hospital will actually "lock down" tomorrow instead of Monday. So once we get to the hospital tomorrow, we will be there until........

Obviously, we are anxious and wish this would just go away, but what do you do?!?! Praying that HE will calm the seas.

Jude is still doing really really well. He is still stuck at his 3lb.9oz. mark, but he isn't losing weight, thankfully. They've added a few calories to his diet so hopefully within the next few days it will start to show. We still hold him and take care of him as much as we can. His nurses keep saying they're going to put us on the payroll. :) We do love his nurses (doctors too). He'll have his echo done on Monday. Praying for positive results~

Love and prayers to all. Stay safe.

2008-08-29T21:14:00.000-07:00

Jude's continuing to do well. There haven't been any real changes today or anything new to report on.

Hurricane update.....both parents are now allowed to stay at the hospital, so Michael isn't leaving New Orleans. On Monday, the hospital will close its doors..nobody in/nobody out. They will board up the windows, and there will also be PLENTY of security.....including National Guards men. We were told to pack for a week. We are bringing drinks and snacks. The cafeteria will also serve breakfast, lunch, and dinner. This will be an experience, but we really do think we will be safe there. We've packed books, movies, magazines, and other "things" to help pass the time. We are also brining cell phones and the laptop but really have no idea how useful they will be if we do get hit hard. We will keep in touch the best that we can. Most importantly, we will be with Jude.

Still hoping and praying that we'll somehow get out of this one!

Safe travels to ALL who will be on the road over the next few days.

Love and prayers~Ohyeah, thanks John for stopping by a few days ago. We enjoyed the visit.

2008-08-28T18:09:00.000-07:00

Jude's had a fabulous day. He is up to 10cc's/hour with his feeds. His belly seems to be cooperating...hardly any residuals for the past two days....yea!!

The reflux issue didn't give him too much trouble today. He is a bit jaundice, and somewhat yellow these days...but is taking medication for it.

About the hurricane......If the city is evacuated and contraflow begins, the hospital will continue to operate but will shut its doors to the outside. Only one parent is allowed to stay and will be confined to the hospital until all is said and done. I will stay with Jude in New Orleans if Michael has to evacuate. The hospital will be secure....it did not flood in or even around the hospital for Katrina. Again, the hospital can operate for weeks (even if the rest of the city isn't). We feel it's safer for Michael to be the traveler....AND I'm just not leaving. If a mandatory evacuation is put in place, we will pack a suitcase for me to have at the hospital and Michael will head out of town. We're just continuing to hope and PRAY that we some how get out of this one!!! Isn't everyone....

Love and prayers~

2008-08-27T17:30:00.000-07:00

Jude had an uneventful day.........minus a few reflux episodes. Reflux.....that's our new thing. ;)

He is feeding and resting well these days. His weight is right around 3lbs 9ozs........looks like we've started putting the lbs. back on!

Many people called today about the potential hurricane........the hospital is ON TOP OF THINGS! They could run the hospital for at least 3 weeks even if the entire city shuts down....and if Jude stays, we stay! The hospital is a safe place. Just hoping we won't have to worry about it!! Everyone is keeping a close eye on Mr. Gustav for now.

As always, thanks for checking in on sweet Jude.
Love and prayers~

2008-08-26T21:09:00.000-07:00

Quick update......

Jude had a wonderful day. His little tummy is cooperating, and his feedings have continued without interruption. He's still at 9cc's/hour. His residuals have been very low....which is good!

The echo still shows the one small clot....with no real change. This isn't necessarily bad. The blood thinner works to keep the clot from getting bigger. Jude's body will actually have to break down the clot itself...so the fact that it isn't getting bigger is a positive.

Jude seemed happy and comfortable today. He loves his pacifier and his THUMB!! So precious.

Love and prayers~~

2008-08-25T20:01:00.000-07:00

No update on the echo. Hopefully I'll hear something first thing in the morning.

Jude was OK today. He had an eye exam this morning and for some unexplained reason, babies take a day or so to recover (that's what we are being told). It might have something to do with the actual drops used in their eyes. He spit up right after, and had high residuals at one point. He was just a little "off". His blood work looked good today so we don't think he's getting sick. This is unofficial, but I did hear from the nurse, who was present for the exam, that they think his eyes look good...they don't feel like he'll end up with any problems there. Good news. Good news.

His weight is about the same. And he's still as precious as ever!!!!

Love and prayers~

2008-08-24T16:38:00.000-07:00

Jude's done quite well today. He's back up to his full feeds, and residuals continue to be minimal. We really hope not to see many more (or any more) interruptions with his feedings.......fingers crossed.

He's gained another half ounce....almost back up to 3lbs.9ozs. His oxygen levels have stayed way up so they haven't had to put the nasal tube back in....hopefully they never will!

I'm pretty sure he'll have another echo done tomorrow. We're back to weekly ultrasounds again. It'd be great to see MORE improvement.

That's about it.....Jude makes every day so much better!

Love and prayers~

2008-08-23T16:52:00.001-07:00

WE SAID GOOD-BYE TO JUDE'S OXYGEN TUBE TODAY!!!! Woohoo! He's doing it all on his own now....and doing a very nice job! No more oxygen tube in his nose, but it has been replaced with his feeding tube. Jude pulled his feeding tube out of his mouth three times yesterday.....so now it's in the nose. He looked like a different baby to us today without the tube and all of the tape on his face. It was fun.

His feedings are going well, too. He's up to 4cc's/hour and residuals are minimal. Hopefully this new formula is the ticket.

Michael and I held Jude just about all day. It was one of those really good days...all is well.

Jude's weight is back down to 3lbs. and 5ozs.----most likely related to the tummy trouble. However, we should be on our way back up!

Love and prayers~

2008-08-22T17:44:00.000-07:00

We've started eating again!!!

It was a long and cranky morning, but Jude started feeds again this afternoon. They've started him at 1cc/hour; feeds will increase by 1cc every 6 hours, considering the belly wants to cooperate, until we get back to full feeds (9cc's/hour). Again, his formula has been switched to one that should be easier for him to digest. Jude's on formula these days because......I ran out of the good stuff. :(

Everything else seems to be OK. We are on our way now to see how he is behaving this evening. Hopefully we'll find him feeling happy and at least a bit fuller.

Love and prayers~