Here are a few silly questions for those of you with CDH'ers....
1) Do your children sneeze? This sounds crazy, but Jaime sneezes often, but can hardly get a sneeze out. Sometimes he'll try to sneeze for over a half an hour. It's kind of funny to watch, but it's sad when he's unable to sneeze because you can see the discomfort. We're thinking that he needs to use his diaphragm muscles, but with only 1/2 a diaphragm...the other is just a couple of patches, it must be hard. Just wondering if any one else has experienced this.
2) Teeth! Jaime has one tiny piece of his left incisor tooth poked out...this since October. He's had swollen gums for MONTHS! I don't know why they aren't coming through...I know teething happens at all different ages, but still, seems like they should have popped through by now. He's not a big drooler either! I don't know if it's because of his adjusted age or because of his medical issues or if it's just him...just curious if anyone else has noticed weird teething stuff. (I have nothing to compare it to, Jared had a couple of teeth by 6 mos.)
3) Developmental stuff! Knowing that all of our babies started out the same way...several days/weeks/months in the hospital...I'm wondering if your kids reached their milestones in the "traditional" way...roll, crawl, sit, stand, walk...etc. Jaime's therapists are making a point to have him do things in "order" rather than what his ability seems to be. For example, I think that Jaime would like to sit, as tolerated instead of being forced to roll on to his incision. Again...just wondering!
So, I think those are all of my CDH questions for now....thank you for any and all answers you may offer!
As for Jaime, he's fine. The poor baby ate a half of jar of "organic-apple/pear/oatmeal wholesome breakfast" this morning...just after he finished, he choked on his spit and ended up throwing up the entire amount ingested...and then some (some of his bottle from earlier). I felt so bad for him, he really enjoyed his breakfast and did very well with it, too. I gave him a break on baby food until this evening when he ate organic apple/sweet potato. He ate about 1/4 of a container, using his new Boon Spoon, of course (LOVE that thing!). I never push feeding when he has a bad experience. I'm going to try the "wholesome breakfast" again tomorrow.
He's doing well with his puffs, too. As I mentioned in a previous post, as long as I crunch them first. Hey, it's a new texture that he's tolerating, so I'll take it! I was instructed not to give him Stage 3 foods because they are too inconsistent, instead, I'm to thicken my homemade baby food. This way the texture will be the same throughout.
In other news, looks like our home nursing is starting to come together. Dale (RN) is going to make a point to be here when Jaime's therapists are here, just to make sure they do indeed work with him appropriately. I'm still in search of new ones, but they are REALLY hard to come by here in Cleveland for some reason. If anyone in Cleveland knows of a home therapy team, PLEASE EMAIL ME sltrost@yahoo.com, thanks. I'm going to try the Cleveland Clinic Team tomorrow.
That's about all! No pics today, I didn't take a single one of the kids! I spent literally my entire afternoon and evening in the kitchen reorganizing it (Mom, you'd be proud). I figured, Jaime's been home for a month and a half now, I may as well make room for his things! I took an idea from my sister and ran with it, thanks, Titi. Looks great in there...at least for the moment!
It's SOOOOOO freaking cold here (negative wind chills), not to mention lots of snow falling. There are several schools already closed for tomorrow. Hope everyone stays warm and safe! Good night, All!
Hi Sheryl. Kristen does sneeze. She also has a patch on the right side and had little diaphram on that side. It's funny because I remember when I was preganant I don't EVER remember her having a hiccup! I don't think that she did. And just as I started thinking about it...I didn't think that I had ever seen her do it with the patch either...well the next day because I had noticed, she did hiccup!!
ReplyDeleteKristen teethed at a normal age, now Courtney who's typical with no complications, she didn't get her first tooth until she was almost 11 mths old! The thing with Kristen is, which is weird, is that all of her teeth have come in discoloured (yellow) and jagged and rough and very crooked! They told me that the high bili counts that she had from the trauma to her liver being moved can do that to the teeth. I just have to hope that her adult teeth come in ok!
Her development, was very delayed for gross motor. She HATED tummy time! It on the other hand did teach her to roll...lol...off of her tummy! We did continue to try, but did work on sitting and standing and such too. She never did end up crawling but butt scooted everywhere. And let me tell you we tried! She did end up crawling, AFTER she started walking!...lol. She walked at 23 mths old. But she could pull herself to stand and cruise the furniture at 15 mths old. We think the brain injury in her visual part of her brain had help with a depth perseption problem that her brain has worked around now.
We too were told the stage 3 foods were no good for her, or any kid for that matter. That it just confuses them. I was told let her get very messy, and put it in her own mouth, less chance of gaggin on it if she places it in her own mouth. We only came off of the puree's in the summer of 2008! She was 2.5 years old! She turns 4 next month, and still doesn't chew food properly. So it's a lot of pasta, and breads. Anything that can basically disolve eventually.
It's hard as a parent and a person sitting on the outside watching our children go through all of these challenges and we understand why, but it's at the same time hard to understand why! Both of your boys are so lucky to have you as a mom! An advocate for what you feel that they need!
Bobbi
Ruby sneezes and seems to do it more when the NG tube is in. She also did it during the sedation wean. She does only have a small patch. It scares me when she gets the hiccups, though. They can't feel good.
ReplyDeleteAs for developemental stuff. Her therapists just were very into getting her on her tummy for arm strength. We do kinda let her guide it though. I'm starting to think she's gonna skip crawling and go straight to walking.
Ruby finally got teeth. She had swollen gums for what felt like months. Then teeth popped up on the same day.
Love,
Holly
Reflux is terrible with teeth for us! Worse than ever:( But, I hear that is normal. Carter sneezes and hiccups like it is his job! Hiccups once a day, no matter what, and sneezes a few times. But, he isn't bothered by either one...I just worry that either one will cause him to throw up!!!
ReplyDeleteOur therapy is dictated by Carter and his progress. So, we just do what he tolerates, which seems to get better each day. He doesn't love his tummy, but tolerates it for periods of time.
Oh, and I also have noticed that Carter is NOT eating or tasting well at all...I read that teething can be a problem for kids to the point they don't want to eat. Makes sense, just wish that it wasn't the truth. Carter hasn't been doing all that great with tastes, he has his moments. I hope it is the teething:(
Anywho, two bottom teeth are coming in, left one has arrived, right one is on the way...next couple days if I had to guess. I imagine this will last forever, until all of the teeth are in! Yuck!
Good luck.
Hey, I like Jared's World.
Oh yeah, and...Carter wakes up at 4:00am EVERY morning. Why? I don't know. But, regardless of a 7:00pm or 10:00pm bedtime he is awake at 4:00!!! Usually goes back to sleep, but is awake for a while. Um...today, no going back to sleep...what the heck? What happens at 4:00? I keep racking my brain - usually he wakes up unhappy at that time.
ReplyDelete1. K sneezes all the time, and loves it when you say bless you- but it isn't hard for her to do. When i was preggo with her she did hiccup all the time and still does quite frequently now- we just give her a glass of water which she absolutely loves. :)
ReplyDelete2. Jaime has more than she does! haha K has ZERO teeth and she is 10 months old today! Yes I said ZERO teeth! I heard brushing their gums helps them grow in- so I've tried that, but of course K doesn't like the toothpaste and screams every time I try to put the toothbrush in her mouth! arg!
3. K, I feel has done everything last month possible for developmental stuff. There is such a HUGE range for all of that stuff that you shouldn't worry- except me, who has a 10 month old daughter who doesn't say dadada or bababa... she just says eheh or argaial (you know some jibberish!) haha We are working on it tho!
As for the stage 3 foods- I know this wasn't a question, but we do give K those. Never heard they were bad, but i can understand it... however, I don't know what else to give her to make sure she gets enough calories in! I have tried spaghettio's - she didn't like them, but I guess I should keep trying?! Who knows!
Lots of snow here too! But no schools were closed ... BOO!!!!! ha!
Hey Sheryl!
ReplyDelete1) I don't remember exactly when, but I believe Emily was home many months before she started sneezing. We used to comment on how she didn't do this. When she would sneeze, she thought it was hysterical and loved to hear "bless you". As for hiccups, I don't believe she had them inutero, but did in the RCNIC and a lot when first home. They are rare now.
2)Kevin & Megan didn't get their first teeth until they were 1yr, Emily's started about 9 months (maybe). Nothing weird on her teething, but I've noticed that a few are kinda pointy. Don't know if that is of any concern. Recently Em has started using a toothbrush and will allow me to brush them some. Haven't tried any paste though. Don't think she'll tolerate it.
3) Emily HATED tummy time and therapists trying to get her to crawl. She's closing in on 2yrs and only in the last few months will lay on her belly for short periods (1-2 minutes). She still doesn't roll over, sometimes has difficulty stilling up from flat on her back. Her left side is still weakened since muscle was taken to create a diaphgram. Emily developed a sit scoot that got her around. Eventually learned to crawl when she was getting ready to walk. Walking finally happened at 20 months.
Let Jaime set his own pace. Sitting (like in the Bumbo) will help strengthen his belly for tummy time, rolling, etc.
You know Emily is slooowwly learning to eat, so there is no Stage 3 foods here! Never gave them to Kev and Meg wouldn't eat ANY baby food. Em doesn't really like baby food either. The OT & SP haven't encouraged it so I don't offer it much.
Carrie, if you're reading this...Emily LOVED to be awake at 4AM back in the RCNIC. Lucky for us it didn't last too long once home. She sleeps through the night...as long as she's laying between Mama and Dada!
OK moms, Here's my question. Does your baby/toddler blink? Emily takes long breaks between blinks. Sometimes it's a little creepy :)!!!
ReplyDeleteHi guys!
ReplyDeleteDakota sneezes everytime she goes out in the sun (my parents tell me I used to do it as a baby as well). However, today she finally got her first cold =( (I guess that is pretty good considering she is a year). She seems to be handling it like a champ so far, but she is definitely sneezing today.
I could not find a therapist close to me that specialized in babies so I gave up on therapy. I also don't have a lot of friends that have babies so you guys are who I look to for advice. So I just worked with Dakota as best as I could on what she seemed close to doing. She hated tummy time until she could flip over by herself ... then she was cool with it. She is still a little behind developmentally ... but so she should be. She is crawling now though. And Kate, she doesn't say Mama or Dada either .... just babbles and I think she says our dog name "Haley" ...go figure.
It took forever for Dakota's first teeth to come in!!! I think it took like 3 months of swollen gums. She has 5 now and I am waiting for more.
I am so nervous when it comes to food. I am scared about taking Dakota to the next step, but I have just started making her things like maccaroni and cheese and hot dogs without the skin, spagetti o's, etc. She LOVES cheese puffs and cheerios and will eat them throughout the day. I just started giving her pieces of yogurt raisins. I don't know ... I can't get her to eat pieces of veggies yet, but she will eat pureed squash, sweet potatoes, and zuccini ... that's it. She will eat pretty much all the stage two fruits. She was really into oatmeal for a while, but now seems sick of it. So we have moved on to yobaby yogurt and she seems to be doing pretty good with that. But she still is not enthralled with eating and we are stalled on the weight gain given she has started crawling and hasn't really increased her volume. Ugh, a constant source of worry!!! I still have to feed her 2x during the night as well just to get the calories in ... my one year old! UGH! I wish we had more services for babies ... I could really use a speech therapist and a nutritionist. Sometimes I feel like I am going it in the dark!
Could Jaime have allergies? I know one more test? Hiccups - Cecilia didn't inutero but before her repair (LCDH) she was in the NICU! Not kidding - on ECMO with hiccups and half a diaphram?
ReplyDeleteTeeth - also due to the medications given in NICUs these babies can have "bad" teeth come in - this could resolve with their "adult teeth".
Development - you are his Mom and you have the feeling he wants to sit - then let him. I do see why they want to go in order but I also know sometimes Moms know best!
Not much help but glad he is enjoying his food.
With thoughts and prayers,
Elizabeth
I probably won't be much help, but I'll try...!
ReplyDeleteJaxson probably sneezes more than most...he inherited my terrible allergies. He sneezes a lot and he has a large patch because his hernia was large. He is on two allergy meds due to this. He has so much stuffiness and runniness that we taught him to blow his nose and he actually does it!
Development - fortunately he was only in the NICU for 37 days and hasn't had any setbacks from his time there. He has done everything on pace with a non-CDH baby, except for gaining weight.
Jax has 8 teeth so far, but they've come in slowly and with lots and lots of drooling and runny noses along with way.
As for eating, another thing we haven't struggled with. But, it's an issue I read about so very often on CDH blogs. I'm a part of an organization called Global CDH and they are hosting a free eating seminar which will be a webinar so that folks can join from anywhere. I know a lot of CDH parents could benefit from this webinar, so please check it out and share with your CDH friends: https://www.globalcdh.org/FeedingSeminar.html.
-Sarah