Went for my 2nd trimester ultrasound at 16 weeks and was told everything looked normal. Today at 34 weeks (third trimester ultrasound), I got a little paranoid looking at his 2d photo. Any thoughts?
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Paranoid about cleft lip
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Premature with cleft
Are there any extra complications regarding a premature baby with a cleft? Do they have to stay even longer? Was it harder for them to feed? Were they sicker?
I'm currently 31weeks pregnant with twins. One has a cleft. I'm on hospital bed rest trying to fight off preterm labor. Any experience or advice would be very much appreciated!
I'm currently 31weeks pregnant with twins. One has a cleft. I'm on hospital bed rest trying to fight off preterm labor. Any experience or advice would be very much appreciated!
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Pictures to keep you positive
Everything will be ok. One day at a time.
We are the best mommies. It's like an extended family.
We are the best mommies. It's like an extended family.
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official diagnoisis today
We want for our 4d scan today (22weeks) our baby girl has a complete unilateral cleft on the left and the palate is effected. I'm relieved to have answers but its all still over whelming.
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my little prince
I am new here. I had a boy with cleft lip and palate right side. I went to terrible time in hospital after birth as I did not know he had this condition. My husband had it too, so I guess the chance was huge to happen again. We went through one surgery and have a date for the next surgery. My husband wants another child, but I don't want to, because he or she will have cleft lip too. I love my babyboy and my husband, but I feel like I am still in a nightmare. I have depretion. Put on weight because of this and I can't find any information on what is the chance of having a second child like that and what can I do to make the risk minimal. Drink folic acid prior conceiving or something like that. Please help with advice. Will be grateful. Here is my babyboy now.
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Post op lip repair Info
We just went through lip and nostril repair for my sons BCLP a couple weeks ago. After the surgery I felt like I had so many questions and could not find answers anywhere, this forum was a life saver though! His surgery was on a Friday (outpatient) so I did not have much contact with his team over the weekend. I thought it might be helpful to compile a "what to expect" list for others going through this surgery. I know every child is different and that each experience will also be different but hopefully this would help others in some way![:)]( ":)")
Immediately after surgery/coming out of anesthesia:
He was crying and very hungry
He did eat, mostly because he was still numb
He did calm down enough to eat a few ounces and then soon fell back asleep
We gave him a dose of pain killers(hydrocodone sp?) before leaving the hospital
He actually did well that day with eating and sleeping
He was very pale( probably nauseous from the meds![:(]( ":(")
poor baby)
He slept well that night waking twice to eat
We continued with pain meds thought the first day and night but switched over to Tylenol the next day
DAY 2
Continued with Tylenol
Started off good with eating and sleeping but quickly went downhill
He was very fussy and needed to be held a lot
He started to refuse the bottle, crying every time we put it near his mouth
He had to be rocked to sleep and mostly held during naps
He was very congested which made sleeping difficult for him
He did better with feedings during the night I think because he was still groggy and half asleep during the time
DAY 3
Continued with Tylenol
Similar to day two but the daytime feedings were worse
He ate two bottles the whole day totaling 6 ounces
Finally he ate 4 ounce bottle at 8:00 before going to sleep for the night
Continued to be congested
DAY 4
Continued with Tylenol
Did well with sleeping and eating at night and throughout the day but still only eating 2-3 ounces at a time
Continued with needing comforting throughout the day and naps
Continued to be congested
DAY 5
Continued with Tylenol,
Was very gassy and still very congested
Neededlots of comforting and would only sleep when being held
Would only eat a couple ounces per feeding, eating every 3-5 hours
After taking bottle out to burp he would refuse the bottle again so we decided to let him eat until he stopped and then burp. he did mich better after we figured that out
Seemed like the stitches were becoming very tight and more uncomfortable each day
DAY 6
Removed the sutures that morning outpatient under gas to sedate him
After waking up he was a happy baby again
He immediately ate 6 ounces which he hadn't done since before the repair
He was happy and smiling the whole day
Still wanted to be held often and rocked to sleep but was more himself
Ate 3-4 ounces every 3 hours
DAY 7
Continued with Tylenol
Ate on a more "normal"schedule today
Still needed more loving than usual
Slept better at night but still up every 3-4 hours
We are about two weeks out of surgery now and I finally feel like things are starting to get back to normal with him. He is eating as he usually would but his sleep schedule is still is out of whack. It is like he is a newborn, waking every 3 hours at night( he was sleeping through the night7-4 pre-op). Also his napping has not been great since surgery, only sleeping 45 mins at a time. We are working on getting him back on schedule and back to his 2 hour naps but it is a project![:)]( ":)")
he is also almost 4 months old now so the sleep problems could be a normal 4 month regression...who knows!
A couple other things.....
We bought a long sleeved onesie that snapped on the side so you didn't have to pull anything over his head for post surgery. I was so glad I did, just one less thing to worry about when you are already stressed and worried for your baby that day.
It's stressful as a parent when they are not eating, I think that was the hardest part to deal with!
If there are people to help take them up on it....you will be grateful to have some one there to hold your little one and give you a break.
Make sure to give them lots of loving....like LOTS! They just went through a traumatic experience and then came out with a new lip and a nose its a lot to deal with, just be patient with them.
Good luck to everyone that is or will be going through this surgery with their little one! Hope this helps.....
Immediately after surgery/coming out of anesthesia:
He was crying and very hungry
He did eat, mostly because he was still numb
He did calm down enough to eat a few ounces and then soon fell back asleep
We gave him a dose of pain killers(hydrocodone sp?) before leaving the hospital
He actually did well that day with eating and sleeping
He was very pale( probably nauseous from the meds
poor baby)He slept well that night waking twice to eat
We continued with pain meds thought the first day and night but switched over to Tylenol the next day
DAY 2
Continued with Tylenol
Started off good with eating and sleeping but quickly went downhill
He was very fussy and needed to be held a lot
He started to refuse the bottle, crying every time we put it near his mouth
He had to be rocked to sleep and mostly held during naps
He was very congested which made sleeping difficult for him
He did better with feedings during the night I think because he was still groggy and half asleep during the time
DAY 3
Continued with Tylenol
Similar to day two but the daytime feedings were worse
He ate two bottles the whole day totaling 6 ounces
Finally he ate 4 ounce bottle at 8:00 before going to sleep for the night
Continued to be congested
DAY 4
Continued with Tylenol
Did well with sleeping and eating at night and throughout the day but still only eating 2-3 ounces at a time
Continued with needing comforting throughout the day and naps
Continued to be congested
DAY 5
Continued with Tylenol,
Was very gassy and still very congested
Neededlots of comforting and would only sleep when being held
Would only eat a couple ounces per feeding, eating every 3-5 hours
After taking bottle out to burp he would refuse the bottle again so we decided to let him eat until he stopped and then burp. he did mich better after we figured that out
Seemed like the stitches were becoming very tight and more uncomfortable each day
DAY 6
Removed the sutures that morning outpatient under gas to sedate him
After waking up he was a happy baby again
He immediately ate 6 ounces which he hadn't done since before the repair
He was happy and smiling the whole day
Still wanted to be held often and rocked to sleep but was more himself
Ate 3-4 ounces every 3 hours
DAY 7
Continued with Tylenol
Ate on a more "normal"schedule today
Still needed more loving than usual
Slept better at night but still up every 3-4 hours
We are about two weeks out of surgery now and I finally feel like things are starting to get back to normal with him. He is eating as he usually would but his sleep schedule is still is out of whack. It is like he is a newborn, waking every 3 hours at night( he was sleeping through the night7-4 pre-op). Also his napping has not been great since surgery, only sleeping 45 mins at a time. We are working on getting him back on schedule and back to his 2 hour naps but it is a project
he is also almost 4 months old now so the sleep problems could be a normal 4 month regression...who knows! A couple other things.....
We bought a long sleeved onesie that snapped on the side so you didn't have to pull anything over his head for post surgery. I was so glad I did, just one less thing to worry about when you are already stressed and worried for your baby that day.
It's stressful as a parent when they are not eating, I think that was the hardest part to deal with!
If there are people to help take them up on it....you will be grateful to have some one there to hold your little one and give you a break.
Make sure to give them lots of loving....like LOTS! They just went through a traumatic experience and then came out with a new lip and a nose its a lot to deal with, just be patient with them.
Good luck to everyone that is or will be going through this surgery with their little one! Hope this helps.....
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Soft cleft palate.. liquid (not milk) coming out of nose
Curious if anyone has had experience with this. My daughter is 5 months old now and has a cleft soft palate. We are very lucky because we've had minimal issues outside of adjusting to feed her. We've obviously had her milk come out of her nose, however, occasionally and especially lately she will get a surge of clear liquid come out of her nose and it will literally soak through her shirt. It's so much liquid and it's totally clear.. Doesn't seem to be her milk. Has anyone had this issue? Just curious if anyone has advice on preventing it or knows what might be causing it. It cannot be comfortable for her ![:(]( ":(")
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Medela special needs feeder? (Bottle help!)
Is the bottle part universal with other medela bottles? Is the membrane the same as with the breast pumps?
$25 for a bottle? That is insanity.
ETA: Am I reading it right that the mead johnson bottles are disposable? I don't want to create that much waste...
If I ordered the pigeon nipple for other bottles, small makes sense right?
I am trying to have a few options read for baby boy when he arrives knowing that one or more of these may not work. Is that a good strategy?
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cleft lip operation
My baby is going to b operated with in few days
They told us to remove feeding bottle and feed by syringe or spoon and train her to do so b4 operation
But its only day 2 and the diet has redhced to almost half
We as parents r in a state of panic
If baby is doing this before operation wat will she do after it
Can anyone help how to feed the baby and train her for proper feeding with syringe or spoon
They told us to remove feeding bottle and feed by syringe or spoon and train her to do so b4 operation
But its only day 2 and the diet has redhced to almost half
We as parents r in a state of panic
If baby is doing this before operation wat will she do after it
Can anyone help how to feed the baby and train her for proper feeding with syringe or spoon
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Syndromes?
Since my baby girl was born (she is 4 weeks old now) with a cleft palate and VSD, her doctors said they will be watching and testing for different syndromes that she could possibly have. Does anyone have a child who has one of these syndromes? When was it diagnosed? I am driving myself crazy scouring the Internet, researching every little "thing" she has, wondering if she will grow up with intellectual disabilities and such. It is really tough and depressing, and I feel like there is no one in my life who can relate. Are there any moms who have gone through this?
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Post-op lip & palate feeding
My son is ten months old and we are three weeks post-op for his bilateral cleft lip AND palate. He has a gtube he got in the NICU as a newborn preemie that we hadn't used since November until post-op the past few weeks. He got cleared Monday for his bottle again and while he wants it, he's having a hard time. I know he's learning to eat again after three weeks and learning to eat with a roof to his mouth (his endurance is less than before) but the question is: how long until your LO's were eating more regularly again? How long do you feel it took their mouths to feel better? I can get him bottling and then I think his mouth hurts again. I feel like it's one step forward, three back all the time.
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How is Cimeosil working for you??
MERRY CHRISTMAS
I know that a few moms were trying cimeosil for the after surgery scar treatment...How is it going for you guys? Have you been seeing a noticeable change?
We had our lip surgery about 2.5 months ago and the scar was looking great, but in the last month, it's become really raised and bumpy. Our plastic surgeon put us on a steriod cream, but it doesn't seem to be helping...
I know that may be due to the natural healing process and the fact that it's irriated by my LO's runny nose and the solid foods that come out of her nose...=)
How are other LO's scar treatment going? I'm thinking of trying the cimeosil...
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April Chat
I been looking for the month of April but couldn't..
I am barely on here but try to check in things..
You all finally getting some spring weather.. We are finally and it been hard keeping my kids in the house to eat dinner.. They feel like they were locked up in the house to long because of winter..
Trent is 13 year old we are almost a month away from his Bone graphing surgery.. He has joined track and field at school. He had his first track meet last week and has one tomorrow. He full of energy.. His grades aren't like where it should be but I think he always have those grades.
Alex my 10 year old son.. He is doing well in school in his own way.. He are waiting for replacement of the hearing aides.. We are trying get a new pair since he lost his others ones.. I am guessing he doing lip reading.. He been a emotional boy lately.. He going to be 11 next month.
Mallory my 6 year old. Is doing very well in kindergarten which I am surprised.. We are still dealing with eating issues.. But she is very active girl.
7 weeks left of school which i can't believe. school year is going fast here..
I am single mom with three special needs with medical issues is though and a lot of work.. Past several weeks it seem I been feeling like I am not getting anough sleep..
I was born cleft palate and lip myself.. Now my parents didn't know I had it till I was born.. I am had so many surgerys and ear surgerys.. I know I been having hearing problems.. February got a hearing test done. Found out ear wax in my ears and my ear drums are flat.. I am moderate to severe hearing loss.. Went see ENt doctor got my ears cleaned out. April 6 I went back to ent doctor to get medical clearance for hearing aides.. I have fluid in both ears. Tuesday I am having surgery putting tubes in my ears.. 34 year old. But glad they doing it since the fluid is making my ears hurt..
We are saving for another disney cruise..
How everyone doing
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Suspected Cleft Lip
Hello all,
I am new to this world. I am 21 weeks pregnant with baby #2, and was told yesterday that there is a possibility that our baby may have a cleft lip. Bare with me, this is long!
We had an ultrasound at 16 weeks for Maternal Serum testing. Ultrasound and test results came back perfect.
Had our anatomy scan at 19 weeks. They had somehow forgotten to book me in for the date I was scheduled, but they squeezed me in. The ultrasound was rushed, and the tech told me I might need to come back because baby was moving too much and she couldn't get the pictures of the heart they needed.* After, DH was concerned about something being wrong with the heart. I said "I'm more concerned about how much time they spent on the face."
*Dr. Google has told me this is a line they use when they suspect something is wrong.
At my OB appointment yesterday, the doctor told me that the tech thinks she MAY have spotted a "minor" cleft lip, but wasn't certain, so they are sending me to a Maternal-Fetal Specialist for a more in depth ultrasound. He said it was just a possibility and that if it was a cleft lip they were pretty sure neither the palate or nostril was involved.** Also stated that the rest of the ultrasound was perfect.
**Dr. Google has told me this is often a line doctors use before they can confirm severity and that it's rare for a doctor to tell you they suspect cleft lip unless they are almost certain about it.
So I'm going back and forth between complete panic and "meh, it could be nothing." I know it's unlikely to be nothing though. I look at my sons beautiful, perfect face and feel overwhelming guilt that this baby won't look like that. Then I feel guilty about being so superficial.
I feel exhausted having to go through this again. Why can't I have a stress free pregnancy for once?! We saw the same maternal fetal specialist during my pregnancy with my son because an early ultrasound showed he had a large cyst of unknown origin in his abdomen. It turned out to be nothing and resolved itself before birth. The one comfort I have right now is knowing how amazing this doctor is. He was so comforting and reassuring, I feel like a weight will be taken off my shoulder once I see him, regardless of the outcome.
I only have 2 ultrasound photos, one from 16 weeks and one from 19 weeks. Unfortunately, both are profile. To me, they look exactly like my sons ultrasound pictures, but you guys are experts at this. Be honesg- tell me if you see anything. The first one is the 16 week scan.
I am new to this world. I am 21 weeks pregnant with baby #2, and was told yesterday that there is a possibility that our baby may have a cleft lip. Bare with me, this is long!
We had an ultrasound at 16 weeks for Maternal Serum testing. Ultrasound and test results came back perfect.
Had our anatomy scan at 19 weeks. They had somehow forgotten to book me in for the date I was scheduled, but they squeezed me in. The ultrasound was rushed, and the tech told me I might need to come back because baby was moving too much and she couldn't get the pictures of the heart they needed.* After, DH was concerned about something being wrong with the heart. I said "I'm more concerned about how much time they spent on the face."
*Dr. Google has told me this is a line they use when they suspect something is wrong.
At my OB appointment yesterday, the doctor told me that the tech thinks she MAY have spotted a "minor" cleft lip, but wasn't certain, so they are sending me to a Maternal-Fetal Specialist for a more in depth ultrasound. He said it was just a possibility and that if it was a cleft lip they were pretty sure neither the palate or nostril was involved.** Also stated that the rest of the ultrasound was perfect.
**Dr. Google has told me this is often a line doctors use before they can confirm severity and that it's rare for a doctor to tell you they suspect cleft lip unless they are almost certain about it.
So I'm going back and forth between complete panic and "meh, it could be nothing." I know it's unlikely to be nothing though. I look at my sons beautiful, perfect face and feel overwhelming guilt that this baby won't look like that. Then I feel guilty about being so superficial.
I feel exhausted having to go through this again. Why can't I have a stress free pregnancy for once?! We saw the same maternal fetal specialist during my pregnancy with my son because an early ultrasound showed he had a large cyst of unknown origin in his abdomen. It turned out to be nothing and resolved itself before birth. The one comfort I have right now is knowing how amazing this doctor is. He was so comforting and reassuring, I feel like a weight will be taken off my shoulder once I see him, regardless of the outcome.
I only have 2 ultrasound photos, one from 16 weeks and one from 19 weeks. Unfortunately, both are profile. To me, they look exactly like my sons ultrasound pictures, but you guys are experts at this. Be honesg- tell me if you see anything. The first one is the 16 week scan.
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baby not eating post op
Please help! I am really desperate. We had my son's cleft lip repair and he was fine in the hospital and eating wonderfully. Then we got home and he cries everytime he sees the syringe or cup. He shakes his head everytime. Anyone have any suggestions???? He is on Tylenol and advil. He doesn't want anything near his mouth.
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bilateral cleft palate, soft bottle?
My son is 10 1/2 weeks old and has a bilateral cleft of his hard and soft palate. We use the enfamil cleft palate feeder, and we like it, but they're so flimsy... I've heard that some companys make silicone bottles that you can squeeze like the cleft palate feeder. Does anyone else use them? Do they work for a cleft palate? where would I be able to find one?
Thanks![:)]( ":)")
Thanks
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bilateral cleft palate mamas?
Hi, my LO has a bilateral cleft of the hard and soft palate, not in his lip or gums at all, and I'm just wondering if there's any moms of LO's with the same thing that would be willing to share what kind of bottles have worked for them and anything else that might be helpful? This board has been helpful to me, but it seems like most of the posts I find are from moms of LO's with a cleft lip as well, or a cleft of just the soft palate, and it seems like each different situation would do best with different stuff... If that makes sense! I'm just wondering what kind of things you've found helpful with your LO with just its palate cleft!
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My 3 months old daughter has chicken pox
3 months old and she is suffering from chicken pox
her whole head and hip area are covered with spots
Has anyone experienced this at this age
What can i do
Should i keep her.in cold weather or hot should we give her a bath
Will the spots leave a mark??
her whole head and hip area are covered with spots
Has anyone experienced this at this age
What can i do
Should i keep her.in cold weather or hot should we give her a bath
Will the spots leave a mark??
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My sunshine.
This is Lincoln Daniel. I'm a ftm at 28 weeks and my baby will be born with a bilateral cleft lip with possible palate involvement. I was crushed at first but in all other aspects he's a perfectly healthy baby boy. There's no trace of this in our family histories or any other indication of why this happened. I now consider myself lucky that I'll be his mom and be able to be by his side through this minor set back in his life. It's hard to digest at first but everything happens for a reason and I'm counting down the days till I can see his precious face!
Reading these posts has really given me alot of positivity and hope for our future!
Reading these posts has really given me alot of positivity and hope for our future!
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Post op palate repair pics
Before
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