Thursday, September 27, 2012
Finally!
Hmmmm.....
Guess who promised an update on Jude yesterday and did not do it?
Yep. That would be me!
I have to admit, the day got away from me and this mommy crashed and got a good night's sleep!
But here I am with the update! And I'm quite sure that it was meant to be for me to delay an update because Jude had big plans for today!
Can you guess what happened today?????
Did you guess?
Hehe.
Jude said "DaDa!" today!
It is a given that we are not sure that he is associating the word "DaDa" with Brian just yet....but we are *thrilled* that he is starting to make those babbling sounds that kiddos his age should be doing by now!
I've not shared it much on the blog, but we've been a little concerned about Jude's speech and this gave us a BIG boost towards thinking that he will be just fine....he is just catching up from being in the hospital a whopping 6.5 months (plus 3 more weeks 1 month after discharge). So, I gotta say that we are pretty proud of our little guy's new found voice and vocabulary. Most of the time he just likes to growl (or make dinasaur noises) but this is some babbling for sure!
This week Jude dropped his iron suppliments and now he is down to one medication and one supliment! He is taking Zantac and poly-vi-sol. Not bad at all!
Overall he is feeling pretty good but I do want to ask you for prayers for Jude's retching and gagging. Because Jude has a Nissen he is unable (or it is *really* difficult) for him to vomit. But at least once a day Jude has an episode of retching and gagging. It last about a minute or so and looks pretty miserable. It breaks our hearts to see him struggle. I've been doing my *research* on this problem and seems like this is a common problem with g-tube/Nissen kiddos. Many CDH friends and doctors have recommended "venting" Jude's g-tube to release any gas/air stuck in his tummy. And I do this several times a day...but he still has the retching problem. He even had an episode yesterday while I was venting him. So, I am a little stumped but his troubles. We plan to talk with his surgery team on Wednesday (follow up visit) about this. Will you pray with us for an answer?
From an eating standpoint Jude is taking little steps towards eating by mouth. Our newest discovery has been that Jude's refusal to eat is becoming more of a behavioral problem....or I guess the best way to put it is that he *chooses* not to eat. Physically he is totally capable of swallowing and we've witnessed him swallowing his formula (via dropper) multiple times. But he has learned that if he freaks out (i.e. screams, drools, big fat tears) then mommy or daddy will get him out of his chair and stop the feeding process. So, now we are focusing on giving him positive reinforcement when he actually *swallows* his formula. Typically he just keeps his mouth open and lets the food/formula run right out of his mouth but in the last two weeks he has started swallowing his formula. Most of the time he gets mad out of frustrating and fear of swallowing. But now we are using a reward system when he successfully swallows and the new approach seemed to work really well today! He swallowed his formula 6 times (6mls) today without freaking out and he even added a few little "DaDas" in there too! Please pray that this method continues to be successful!
Physically Jude is working really hard too. He able to sit unassisted and is getting better and better at catching himself when he starts to fall. His left side of his body is a little tight and needs some extra stretching. We suspect that he has been leaning more to the left because of the pain he has experienced from the many surgeries on the left side of his body. This has also impacted the muscles on his back on the left side of his body. He is already "balancing out" a good bit but he/we will have to continue to work hard to lengthen his muscles. Jude is also working with his PT to "army crawl". He is barely started but I can see the desire and determination in his eyes to get moving (and keep up with his sister)!
Our family life is starting to feel a little bit more *normal*. It is amazing to have our little guy not vomiting several times a day....it is amazing to be able to feed him bolus feeds only 5 times a day (instead of continuously all day long)....it is amazing to take him outside to swing and play with his sister....it is amazing put him to bed and have him sleep through the night...it is amazing to watch him laugh with his sister and light up when she is near.
My hope is that I will always appreciate and remember where our little guy has been. What an incredible and miraculous journey! The Lord is good. We are thankful for the path and journey that he has chosen for Jude and our family.
Guess who promised an update on Jude yesterday and did not do it?
Yep. That would be me!
I have to admit, the day got away from me and this mommy crashed and got a good night's sleep!
But here I am with the update! And I'm quite sure that it was meant to be for me to delay an update because Jude had big plans for today!
Can you guess what happened today?????
Did you guess?
Hehe.
Jude said "DaDa!" today!
It is a given that we are not sure that he is associating the word "DaDa" with Brian just yet....but we are *thrilled* that he is starting to make those babbling sounds that kiddos his age should be doing by now!
I've not shared it much on the blog, but we've been a little concerned about Jude's speech and this gave us a BIG boost towards thinking that he will be just fine....he is just catching up from being in the hospital a whopping 6.5 months (plus 3 more weeks 1 month after discharge). So, I gotta say that we are pretty proud of our little guy's new found voice and vocabulary. Most of the time he just likes to growl (or make dinasaur noises) but this is some babbling for sure!
This week Jude dropped his iron suppliments and now he is down to one medication and one supliment! He is taking Zantac and poly-vi-sol. Not bad at all!
Overall he is feeling pretty good but I do want to ask you for prayers for Jude's retching and gagging. Because Jude has a Nissen he is unable (or it is *really* difficult) for him to vomit. But at least once a day Jude has an episode of retching and gagging. It last about a minute or so and looks pretty miserable. It breaks our hearts to see him struggle. I've been doing my *research* on this problem and seems like this is a common problem with g-tube/Nissen kiddos. Many CDH friends and doctors have recommended "venting" Jude's g-tube to release any gas/air stuck in his tummy. And I do this several times a day...but he still has the retching problem. He even had an episode yesterday while I was venting him. So, I am a little stumped but his troubles. We plan to talk with his surgery team on Wednesday (follow up visit) about this. Will you pray with us for an answer?
From an eating standpoint Jude is taking little steps towards eating by mouth. Our newest discovery has been that Jude's refusal to eat is becoming more of a behavioral problem....or I guess the best way to put it is that he *chooses* not to eat. Physically he is totally capable of swallowing and we've witnessed him swallowing his formula (via dropper) multiple times. But he has learned that if he freaks out (i.e. screams, drools, big fat tears) then mommy or daddy will get him out of his chair and stop the feeding process. So, now we are focusing on giving him positive reinforcement when he actually *swallows* his formula. Typically he just keeps his mouth open and lets the food/formula run right out of his mouth but in the last two weeks he has started swallowing his formula. Most of the time he gets mad out of frustrating and fear of swallowing. But now we are using a reward system when he successfully swallows and the new approach seemed to work really well today! He swallowed his formula 6 times (6mls) today without freaking out and he even added a few little "DaDas" in there too! Please pray that this method continues to be successful!
Physically Jude is working really hard too. He able to sit unassisted and is getting better and better at catching himself when he starts to fall. His left side of his body is a little tight and needs some extra stretching. We suspect that he has been leaning more to the left because of the pain he has experienced from the many surgeries on the left side of his body. This has also impacted the muscles on his back on the left side of his body. He is already "balancing out" a good bit but he/we will have to continue to work hard to lengthen his muscles. Jude is also working with his PT to "army crawl". He is barely started but I can see the desire and determination in his eyes to get moving (and keep up with his sister)!
Our family life is starting to feel a little bit more *normal*. It is amazing to have our little guy not vomiting several times a day....it is amazing to be able to feed him bolus feeds only 5 times a day (instead of continuously all day long)....it is amazing to take him outside to swing and play with his sister....it is amazing put him to bed and have him sleep through the night...it is amazing to watch him laugh with his sister and light up when she is near.
My hope is that I will always appreciate and remember where our little guy has been. What an incredible and miraculous journey! The Lord is good. We are thankful for the path and journey that he has chosen for Jude and our family.
Sunday, September 16, 2012
Thursday, September 13, 2012
Prayers for a CDH buddy
Hi friends,
While Jude was in the hospital I met a new friend, Liz. You see, Liz was pregnant with her 2nd child. But like us, Liz and her husband Grady found out that their sweet baby girl, Lily, had CDH.
Liz and I have become friends over the last several months and we've both faced terrible days with our little CDH fighters. We've both celebrated the homecoming of our sweet kiddos too.
But Lily's journey is getting hard again. My heart is aching for the tough tests ahead of her. I know Liz and Grady are so scared and worried for their little girl.
Will all of you please join me in praying for Lily, Liz, Grady and their other sweet daughter, Izzy? I know they'd be thankful for your prayers.
Please follow their journey, HERE for updates and specifics on how to pray for Lily.
I know I can count of all of you to lift them up to our great God!
While Jude was in the hospital I met a new friend, Liz. You see, Liz was pregnant with her 2nd child. But like us, Liz and her husband Grady found out that their sweet baby girl, Lily, had CDH.
Liz and I have become friends over the last several months and we've both faced terrible days with our little CDH fighters. We've both celebrated the homecoming of our sweet kiddos too.
But Lily's journey is getting hard again. My heart is aching for the tough tests ahead of her. I know Liz and Grady are so scared and worried for their little girl.
Will all of you please join me in praying for Lily, Liz, Grady and their other sweet daughter, Izzy? I know they'd be thankful for your prayers.
Please follow their journey, HERE for updates and specifics on how to pray for Lily.
I know I can count of all of you to lift them up to our great God!
Tuesday, September 11, 2012
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!
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!
Friday, August 31, 2012
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!
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?
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):
I also want to share this picture (or list) with all of you:
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!
Tuesday, August 28, 2012
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!
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