Whoa, it is September!

Hi friends,
We've been keeping busy with our two kiddos since Jude's last discharge from the hospital. And overall our little guy is feeling pretty good. (except for the cold he has been battling this week)

Proof: Sheer Joy!

It is obvious that Jude feels SO MUCH better physically and that life without an ng tube in his nose is the way to go.

Over the last couple of weeks Jude has been hard at work with physical therapy and occupational therapy. Physically he wants to work hard but his little body is still recovering from his surgery...we are sure that he will surprise us with what he is capable of in the coming weeks! He is already doing more physically than he was before surgery. (Rolling over, holding himself up in his exersaucer and pushing with this legs to try to bounce, remains happy during tummy-time, sitting unassisted for longer periods of time, reaching for items, reaching when he wants to be picked up......)

From an occupational/feeding standpoint Jude had made tons of progress but he is still not eating a lot by mouth. Before surgery Jude would barely tolerate any food in his mouth. He would gag constantly and throw up. Since surgery he chew on puffs, wagon wheels and teething biscuits...and he will allow baby food into his mouth but he is not a fan of swallowing any of it. We are quite sure that Jude has a terrible fear of swallowing food or liquids and/or allowing it to get to the back of his mouth and tongue. It is quite a challenge trying to teach a little person to swallow! We think that his swallowing fear comes from having SO MANY tubes in his throat throughout his long hospital stay.

Will you pray for Jude's eating? Will your pray for our occupational therapist as she helps us move Jude towards feeding by mouth? Will you pray for our endurance? It is so hard to watch his struggle with eating each day. From a mechanical standpoint Jude is fully capable of swallowing effectively (he had a swallow study done at MUSC and was cleared for trying to eat food by mouth) it is simply his fear and oral aversion.

I've been doing my research on CDH kids with g-tubes and when they usually start eating by mouth...and what I've discovered is that most kids seem to either eat in the first few months of life or not until they are around 3 or 4 years old. (Of course, it is a given that ALL CDH kids are different...but I wanted to get an idea of what the other CDH mommies were finding) It seems that kids feel a little more "peer-pressure" to eat like their peers around the 3 to 4 year old mark.

I'm still not sure if I find this encouraging or discouraging! But, what I do know is that I am asking the Lord to give Jude and both Brian and I the endurance to continue to try to get Jude to eat by mouth every day (3 times a day)! We will not give up!

What else have we been up to?
Here are a few things:
- Celebrated Annabelle's third birthday party by surprising her one afternoon when she got up from nap. She had a BLAST!
- Now that the weather is cooling down a bit we've been taking Jude outside a little more (when those blasted mosquitoes aren't out!) for walks with his sweet sister.
- Family nights out in the van. Since we aren't taking Jude out in public right now we've had quite a few "take-out" meals in the van to help us feel like we are "getting out" as a family.
- Brian and I has escaped for a few date nights out here and there thanks to my parents. (Oh, and on the 18th we are celebrating 8 years of marriage! Woo Hoo! Love my sweet hubby.)
- Lots and lots of sibling play time...seriously, our two kiddos can't get enough of each other and it brings such joy to our hearts.

Well, that is the scoop for now! Thank you to all of you who supported us (in many different ways) during Jude's second hospital stay. We could not have done it without you all! God bless!
 

How does this thing work?

Jude enjoying his Johnny Jump Up!

He is home again...and it took me three days to let you all know!

First off, let me say...

Jude is home!!!!

I apologize for not formally announcing it on the blog sooner. As soon as we got word from the doctors that we could take our little guy home I had the car packed. We we ready to break out of that hospital as soon as possible!

We love the folks at MUSC, but man, we'd already spent more than 200 days there.

So, I want to rewind a little bit...remember this little guy?

Cute...but not so happy. This is the way that Jude had to sleep each night before his recent surgery. Jude LOVED to try to pull his ng tube out and this was the only way to keep that blasted tube in his nose. The sweet little guy slept like this every night. I know he was miserable.
What is funny is that we took this picture to show to one of Jude's doctors to advocate for a g-tube. We had no idea that later that day we would find out that Jude had re-herniated and that Jude would begin his hard (but worth it) journey towards a g-tube (and Nissen).

So, here are a few photos of Jude's journey in the hospital (did not have the ability to upload them during Jude's stay):

Reading books to pass the time

Pre-surgery with Mommy

Pre-surgery with Daddy

Post surgery - we really did not want to see this again. But he pulled through SO QUICKLY!

My smiling boy just days after surgery!!!!

I also want to share this picture (or list) with all of you:

This is a schedule for all the medications that Jude took before surgery. After surgery and this last hospital stay he is only taking one medication, iron and infant vitamins! How incredible is that?!?! Praise God!

The last three days have been filled with balancing life with two kiddos. I'm feeding Jude every four hours (through his g-tube, over a 1 hour period). I'm also working with him on oral feeds too...at least three times a day I try to get him to eat a little baby food with his formula. He is taking more food by mouth than ever before. (We still have a long way to go) We are amazed by the progress he has made. And we are pumped about him starting up his therapies next week.

I hope to update again later this week and share some recent pictures of our little guy at home. The difference in Jude's demeanor is HUGE. He just plain feels better. Praise God for providing a way to Jude to feel like a normal little baby.

God bless you all...keep praying! 

Wowzers

Guess what folks? 

It is looking like Jude will go home tomorrow! Yippeee!!!!

We are so excited that Jude is doing so well!

They started attempting bolus feeds with Jude yesterday and get this...he is up to full feeds today and handling them beautifully! No more TPN! He is currently receiving 150ccs of formula over 30 minutes every three hours. Dang man, those are like real baby feeds! I never thought that Jude would be able to eat like this...but he is! Bye bye continuous feeds! Praise God for providing a way for Jude to have a g-tube and Nissen! We firmly believe that the conbination of the two has made all the difference for Jude's little digestive system. 

He has not thrown up (it is quite hard to with a Nissen) since surgery and his little tummy is moving formula through just as it should. How can this be?!?! I am still dancing from the good news!

In other wonderful news: Do you remember the scary beast called pulmonary hypertension from months ago?

Gone. Yep, totally resolved. 

Jude got a follow up echocardiogram a few days ago and I got word this morning that his pulmonary hypertension is totally resolved. Yahoooooo! And that medicine he was taking three times a day to combat it? Gone. No longer needed.

The Lord is good!

I guess you can tell this mommy is a little spunky. That's right, my boy is kicking butt and taking names! 

In the last few days Jude has become tube free (no more ng tube in his nose) and he no longer has to wear the little elbow guards that keep him from touching his face. Yup. And he can sleep totally hands free too. No more baby in a sack. Just a little wiggle worm trying to figure out what to do with all this freedom.

Well, I have a little more to share with you but I will save that for our next post. There is some major flooding in Charleston today and I want to beat the next rainstorm out of the hospital for a few errands. 

Keep praying and praising with us!

Here is the scoop!

Hi friends,

Jude's mommy here!

I'm hanging out with Jude in his hospital room while he takes a hearty nap. He finished up some great time with his lovely OT (Katy) an hour or so ago and therefore he is quite tired. I've got a great picture of Jude sitting on a little stool during OT that I want to share with all of you but I don't have the cord to upload my pictures. I promise to share them as soon as I can.

So, here's the scoop:
(I know that is what you are waiting for!)

- Jude is healing well and is only needing the occasional PRN dose of pain medication. We are super pleased (and so are the surgeons) with how well he is recovering.

- Last night the surgeons decided to start feeding Jude pedalite through his G-tube. They gave him a very small amount in hopes of "waking up" his little digestive system. This afternoon they will begin feeding him formula (a very small amount) through his G-tube. They will give him 15cc over 30 minutes and then check in 3 hours to see how much of the forumla moved through and was digested. This process is called checking for a residual. Please join us in praying that Jude's little stomach is up for the challenge. If the feeding goes well they will eventually increase the amount of volume that they will give Jude through his G-tube.

- Currently Jude is receiving nutrition via TPN (as explained in a previous blog post) and we would love for him to no longer require this menthod of nutrition. We'd love to go home receiving all nutriton from formula and then begin working on feeding by mouth with our sweet OT at home (Elecia). Please pray that he can go home without TPN.

- Physically Jude seems to have bounced back pretty well! He is experiencing a little bit of weakness and pain around the incision site but we feel certain that he wil quickly bounce back to his busy ways and work hard with his awesome PT (Shannon) in Florence. Since he has been in the hospital he is even showing interest in getting on all fours....maybe crawling is in our future?!?!

- My favorite part of all this awful hospital stuff? Jude hasn't thrown up AT ALL since surgery. Not once. Praise God for a successful Nissen and G-tube! This morning Jude is completely free of tubes in his nose/throat and he is no longer having to wear the elbow imobalizers to stop him from pulling the tubes out of his nose. He is just so dang handsome and cute!

- Please pray that we will get to take our little guy home soon! As much as we love the folks at MUSC we are ready to get out of here. We've spent far too much of 2012 in Charleston. We are hoping for an end of the week discharge...maybe by the weekend?

Please keep praying for healing and progress. I am amazed that we are on this side of his surgery. What a joy to know that he came through this even better than before!

Please continue to pray for our sweet daugther as she misses Brian and I. We are currently taking turns in Charleston and Florence to be with each child.

Please pray for Brian and I. We miss each other so much. I can't wait to be with him everyday again.

Please continue to pray for our house to sell...it would be wonderful to have one less thing to worry about. (And one less bill to pay)

Please pray for the family and friends who are taking care of us during this journey. It has been a long road and they are weary too!

God bless you all. Thank you for your faithfulness!

Real quick

Jude is doing well! We apologize that it has been awhile since an update. He no longer requires O2 anymore and he is healing slowly and surely! Hoping that they will start feeding him through his gtube for the first time tomorrow! Plans are to post a more detailed post tomorrow! Thank you for praying!

Extubation, or, I can breathe on my own, thank you very much. :)

Jude was just extubated! (That is to say, he was taken off his ventilator and his breathing tube was taken out.) We're super excited that he was able to get off the ventilator so quickly! He's still going to be on nasal cannulas for a little while, which will give him a little bit of extra oxygen than he would get from breathing room air, but extubation the day after surgery suggests that his lungs are in really great shape!

We'll try to post more information a little later today. Thanks for continuing to follow Jude's progress and pray for him! We're continuing to pray for a speedy recovery from surgery and that his body will, even now, begin to prepare for resuming other activities, such as feeding and digestion.

The Toughest Little Man

Our little man pulled through! Surgery is over, and everything went very well! God is good!

All three parts of Jude's surgery came off without any major problems, and he's been moved up to the pediatric intensive care unit (PICU) to begin his recovery. (He did lose some blood in the surgery, but it wasn't an excessive amount, so the team in the OR was able to bump him back up to appropriate levels with some extra blood and fluids that were made available for him.) He's still on a ventilator, but he may lose the breathing tube within the next few days. For now, he's on some drugs to manage his pain and keep him asleep until tomorrow.

Thank you all for your prayers for a successful surgery! We are very thankful that the Lord brought Jude through this challenge! Now we pray that He will likewise provide for a swift recovery for our little tough guy. :)