It’s been three weeks since we took out Lukas’ feeding tube and he just keeps doing wonderfully!  At this point, he is drinking around 150-170 mls each time and is often able to drink in about 35-45 minutes instead of the hour it used to take.  He is also gaining weight well!  He’s gained about a half a pound each week and is almost 16 pounds already!  We are so impressed with him and still in awe of what he’s now able to do!

The Monday after the tube came out, we had an appointment with his gastroenterologist.  It was originally the appointment at which we were going to discuss surgically putting in a more permanent feeding tube.  It was so great to be able to tell him that Lukas doesn’t need a feeding tube anymore!!  He was very surprised and excited for us!

At the same time, Lukas has also been working with the therapist from Therapies 4 Kids for a couple of weeks now.  She’ll be here working with him for a month intensively and then she’ll teach us how to continue working with him while she’s gone.  He definitely seems to be making progress!  He is holding his head up better, using his arms more, and getting better at rolling assisted.  He even rolled from his tummy to his back by himself once!  She has all kinds of special equipment she uses with him, included a therapy suit that gives him extra support to make it easier for him to do things.  She also has a belt from which he can be suspended and bounce or walk in place.  He absolutely loves it!

We have lots of pictures and even some videos, but no time to post most of them now.  We’ll post more soon!!

Lukas in the therapy suit

Lukas works on lifting his head

Rolling!

Lukas and his excellent therapist, Jackie

… are among the things we had no use for until recently!  Today, as of 8:30 am, Lukas Timothy Tallent is tube free!  He did so well yesterday, eating between 70 and 100 every feeding, that the doctor in Austria said we could take the tube out early!  So, this morning we pulled off the tape, pulled out the tube, threw it in the trash and took a picture of it.  When we fed him afterward, he drank 115 mls in 45 minutes!!  Of course, he spit up about 20 mls of it in the middle, and we suddenly realized what that drawer full of burp cloths was for.  He’s been eating like a champ all day long and getting lots of kisses on his tube-free and tape-free cheek.  It’s amazing and wonderful and a bit surreal.  Pictures below!

Happy family

What?! No tube!

Lukas with Mom and Grandma

Feeding Lukas

NG tube in the trash

So amazing!

In: Home Update

21 Sep 2010

And the new record is 93!  He’s just eating away like crazy!  We’re so proud of him and ready to take the tube out on Friday!  He can do this!

So, Lukas broke his own record this morning by drinking 55 ml!!  Then, a few hours later he broke it again by drinking 60!!  THEN … a few hours later he broke it AGAIN by drinking 72!!  And to think, just last month we were excited that he drank 8.  He is doing amazingly well and we feel we can start to relax a bit.  Keep sending all your positive energy because it is clearly helping!

This process is so difficult, but Lukas is doing great!  His new record is 47 ml and his daily intake has almost tripled from when we started.  He is definitely making progress, though he’s not yet taking in as much as he eventually needs to.  The doctor we’re working with keeps reminding me that he is still in the process of learning all the skills he needs and the more anxious we are about it, the more it affects him and the less he drinks.  It’s tough, but we’re getting there!!  In about another week, we’ll try taking the tube out and see how he does without any tube feeds.  Keep us in your thoughts and prayers!

In other news, his occupational therapist has been giving us ideas on how to help his vision.  He still prefers high-contrast black and white images, but also likes red and shiny things.  We went to a party supply store recently and bought him a shiny red balloon.  He loves it!  His eyes get all big when we put it in front of him and he reaches his hands out to touch it.  We’ll get some pictures and post them up soon.
That’s all for now.  Thank you, everyone, for your support!

Quick update

In: Home Update

14 Sep 2010

New record: 40 ml!!  He is making progress!

So, we’re on day 6 of the tube weaning and it is stressful, scary, exciting and hopeful all at once!  They’ve been slowly having us reduce his tube feeds and try to increase his oral intake.  At this point, they’ve had us eliminate all 4 of his daytime tube feeds while still giving him the continuous feed at night over 9 hours.  We offer him the bottle every couple of hours and try to read his cues.  As long as he wants to suck on it, we let him (sometimes this means he’s eating for an hour and half!).  When he tells us he’s not interested we stop and try again later.  It’s been tough because the first few days he wasn’t drinking very much at all.  Their theory is that he has likely been overfed on the tube because he hasn’t ever been able to tell us how much he wants or when.  He’s just had food pumped into his stomach on a schedule, like it or not.  So, he’s never been hungry and he doesn’t know what it means or that the bottle will solve it.  He’s also had to try to build up his feeding skills very quickly over the past six days.  He never really got significant practice with coordinating his suck, swallow and breath sequence before.  It’s been a steep learning curve for all of us, but especially for him.

Today he finally started picking up his intake.  He set a new record of drinking 34 ml!  This still isn’t quite half of what he was getting by tube, but it’s definitely a sign that he’s starting to get the hang of it.  It’s hard to say how much he’ll really want or need, once he’s in control of his intake rather than us.  It’s very likely that 85 ml every three hours was simply too much.  His sucking skills are getting stronger and he definitely seems more motivated.  I think he may finally be starting to understand that drinking from the bottle = no more hunger.  He also seems like maybe he’s even starting to enjoy drinking from his bottle!

Soon, we will start reducing the continuous feed by one hour at a time until it is gone completely.  Then we’ll be able to take that damn tube out of his nose!  We can’t even begin to tell you how amazing that day will be!

It’s pretty scary to not have so much control over how much food he gets, though we recognize that the way things have been is certainly not normal.  It will be such a blessing to have that tube out of his nose, the tape off of his face, and the pump out of our lives.  To not have to answer questions about “what’s wrong with the baby” and to be able to leave the house with just a bottle in tow (instead of a bag of milk, a pump, a syringe and a stethoscope) will feel so divinely normal!

As a chronic worrier, I’ve had a hard time with knowing that he’s getting significantly less food than before, but Andrei reminds me that the team we are working with has weaned thousands of kids off of feeding tubes and they know what they’re doing.  We send them a daily intake protocol with how much he’s had and his height and weight for the day, so he is being very closely monitored.  Despite the drop in calories, he definitely still seems like a happy and active little bear, so I’m trying to be more zen about it all.

Anyhow, that’s the news for now.  We’ll try to post more frequently during this process to keep you all updated about how it goes.  In the meantime, keep the image of Lukas as a bottle-fed baby in your thoughts!!

Flexible boy

Bottle baby!

Lukas is doing great and we’re very excited about some things that are currently in the works.  We’ve been doing a lot of research about how we can get rid of his feeding tube, knowing that the tube itself may be a lot of why he doesn’t drink more from his bottle.  NG tubes, like he has, are associated with gagging, increased reflux, delayed swallowing and oral aversion, among other things.  With all of that, it’s no wonder he’s hesitant to drink!  In our research we found a program that is entirely devoted to helping kids get off of feeding tubes.  Apparently, it’s very common for temporary feeding tubes to become long-term because of a lack of professional support in getting kids weaned off of them.  In addition to the problems mentioned above, kids also are hesitant to take anything orally because they never really experience hunger.  They are just fed a set amount on a schedule and have no association with oral intake as a way to solve hunger.  In the meantime, many professionals just assume the tube will go away once kids start taking more by mouth, but it may be the very presence of the tube itself that prevents this from happening!  The program is in Austria, but they have a netcoaching program where they will assist the weaning process via internet and e-mail.  We have signed up for it and should begin soon.  We are very excited and hopeful that Lukas will be tube-free before too long!!  If you’re interested to learn more, the website is: notube.at

We have a couple more weeks of hyperbaric left and Lukas continues to do pretty well in the chamber.  Many of you have asked how I feel about being in the chamber.  Honestly, it doesn’t bother me at all.  I’m not prone to claustrophobia, which certainly helps.  It’s pretty tough when he does start crying, though, since I can’t stand up and bounce him like I normally would.  Sometimes I’m able to get him calm again, but there have been a few times when he just screams and screams until he’s red in the face and the windows of the chamber are fogged up.  Not a happy thing for anyone involved!!  Luckily, this is a pretty rare occurrence.  Most of the time, he sleeps peacefully and I watch a movie through the chamber window.  Not a bad way to spend an hour.

As far as effects of the chamber go, Lukas is still focusing better with his eyes, smiling more, sleeping better, and seems generally calmer.  It’s hard to say how much is just a result of him getting older, but we are grateful for it nonetheless.  As for me, I think I have more energy and better skin!  And my fingernails and hair seem to be growing so fast!

Another therapy we will be starting soon is through a company called Therapies 4 Kids.  They work with many kids like Lukas to help them overcome developmental delays.  They are based in Florida, but will be sending a therapist out here for a month to train us on how to help him.  We will also be purchasing some special equipment to help him.  You can learn more about all of that at therapies4kids.com.  We’re very excited to be doing more to help him!

Andrei took some pictures with his fancy camera at the park the other day, but most of the pictures we’ve been taking have been with our cell phones, so you’ll definitely notice a difference in quality.  All of the recent pics are posted below.  Enjoy!

Sleepy boy at the park

Smiley boy!

Mom and baby in blue

Unhappy

Unhappy little bear

Dad's baby hold

Wow, it’s been quite awhile since the last update!  Things have been going really well.  Lukas is doing great with bottle feeding!  His new record is 25 ccs!!  Most the time, he drinks between 10 and 15.  His ability to latch on and suck is getting much better, stronger and more consistent.  It still takes him some time to get started, though, but he is mostly not too fussy about it.  The biggest obstacle is that he still gags a lot and sometimes that makes him throw up.  Not a happy thing at all!  Still, he is clearly making progress.

We’ve finished a month of hyperbaric treatments, so we are halfway done!  Lukas is doing really well in the chamber.  Usually, he sleeps through it, but even if he does wake up, he is getting better at staying calm and just going back to sleep.  After the treatments, he always seems a lot more mellow and tends to do better with the bottle feeding.  He also seems to be focusing his eyes more on things.

He still doesn’t smile very often, but when he does smile, it tends to last longer.  The other day, he smiled for quite awhile and, when he stopped, Mom touched him on the cheek and he started to smile again.  This was great because he usually doesn’t smile for any reason having to do with us.  It was nice to see a smile in response to interaction.

He’s been sleeping pretty well most nights.  Typically, he only wakes up once or twice, sleeping about 4-5 hours at a stretch.  We are very happy about this, though we still get up every three hours for Mom to pump.

After visiting the gastroenterologist, we started a new reflux medication, but it doesn’t appear to be helping.  Tomorrow, we take him in for a gastric emptying study, which should help us to see how much reflux he has and if any of it is being aspirated into the lungs.  This will help us to figure out what the next step should be in treating it.  It would be so great to get that under control!  I’m sure we’d have a much happier baby if he didn’t have so much reflux.

Early Intervention therapy services will finally begin next week.  We are looking forward to having someone work with him more consistently and to seeing the progress that follows.  He is definitely getting better at some of the things we have been working with him on so far.  He holds his head up more on his own and is getting stronger in his torso as well.  He often rolls from his side to his back or stomach, but not much more than that.  He loves to kick his legs, though!  Those little legs are constantly going!

That’s about all for now.  We’ll try not to take so long before we post again!

Mom and Lukas getting into the hyperbaric chamber.

In the chamber.

Sleeping.

Hey everyone!  So, we had to change Lukas’ feeding tube the other day and we took the opportunity to get some more pictures.  Some of the pictures are posted below and some are in Andrei’s flickr stream.  You can check those out to the right of this post.  It was so nice to have the tube out for a few hours, but so terrible to have to put it back in.  Few things upset him more and it’s so hard to have to do anything that makes him so unhappy.

The second week of HBOT went pretty well.  Two of the days, he woke up in the last fifteen minutes and started to cry.  By the time we left the chamber, he had gotten himself into quite a crying frenzy.  It’s hard to calm him in the chamber.  Fortunately, he’s slept through the full hour since then.  Even on the days when we don’t do hyperbaric, we get him to nap at the same time so we can keep him on a schedule.  We haven’t really noticed any new changes in him from the oxygen, but Mom seems to have a bit more energy.  It will be interesting to see what other effects there are as the treatments continue.

We’ve been having a hard time with the bottle feedings lately.  He got up to 10 ccs at one point, but the last few days have been 3 or 4 each time.  He’s been gagging more frequently and been a bit fussier with it, which makes it hard.  We see the gastroenterologist tomorrow.  He can help us figure out how to better manage his reflux, which may make the gagging, the fussiness, and the bottle feeding all better.  We’ll also be discussing the benefits of the surgically placed G tube with him, although even if we decide to go that route, we may have to wait until the HBOT treatments are done.

As for Mom and Dad, we celebrated our 4 year wedding anniversary recently (August 5) and had a lovely evening out at dinner while Grandma Fredy watched Lukas.  It was nice to put on clothes that didn’t have baby spit on them and have a peaceful crying-free dinner.  Aubri’s 30th birthday is also coming up on August 16.  It’s a big month for us!

About this blog

This blog is all about the beautiful Lukas Timothy Tallent.

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  • Anne: I'm so happy to see all the cute pics and videos--I especially love the one of Lukas standing strong [...]
  • Ashley: Wow! I can't get over how strong and big he looks! Thank you for the update! When is the big birt [...]
  • Aubri: Thank you, Carrie! That's very sweet of you to say. If you ever find yourself on Oahu, let me know [...]
  • Carrie Wardle: Wow! Lukas is Lucky to have such great parents, and a mom who always was a gifted writer! [...]
  • Mandy Bennett: Hey! Great talking to you the other night! I found another program you may be interested in for Lu [...]