Any moms here with a baby that has a cleft palate?????advice

Question

Hi ladies really desperately because i have a baby girl witha cleft palate and pierre robin syndrome  too .in need of advice my baby's doc isn't helping basically at all,she's having breathing issues that are getting worse  ,and feeding too .they're only giving the same answers back ,i wished they tried something else on her 
.i sleep every day 1 ro 2 hours a day,Her as well ,because her her cleft palate. The big plus my ass of my husband is slacking on baby duty man really ,i told him to do his part ,but man im burnt out that i feel so off/depressed/postpartum  ,im just fucking mad at the doctor's/and the people who say are you ok/are you tired ?i just want them to tell me its ok ,ill help you  what do you need ?nope this doesn't exist .not even my sister's  always work so they can never help its always been me with my kids /no help from sisters. But please advise on my baby who has had a baby with this ?and what  did you do to help the baby during these episodes (breathing)

Answer

I have a 3 week old with a cleft palate and can offer support if you need. It was a severe struggle for us at first but we seem to have a good routine now. How are you feeding your baby. This might be the issue with a cleft palate babies can't create suction we have been using specialised Dr brown bottles for babes with cleft palate and it has helped us tremendously with feeding and breathing issues. If you have more questions reach out!

Answer

Do you have a cleft team? Is she taking food orally? Are you breastfeeding or bottle? She might not be getting enough nutrition which keeps her awake. Or she could have reflux that wakes her when laying down. 
First off, you need a good night of sleep. Tell your partner you are off for a night. Then find a doctor near you that specializes in the syndrome or at least in genetic abnormalities. And find a cleft team. Shriners hospitals are known for their work in the field if you have one near you.  
Follow your mom gut. You spend all day with her.

Answer

Hi my son is 5 now and also had cleft palate and pierre robin syndrome. He had a lot of trouble breathing after he was born and spent his first 2 weeks in the nicu. He was sent home on a pulse ox monitor and need a special car seat to lay down on his stomach because he would stop breathing and his oxygen levels would drop in the regular infant seat. What kind of questions do you have? I would love to be of assistance if I can.

Answer

My baby is 8 months old... She has a bilateral cleft palate... Which means she doesn't have a palate at all!! I constantly clean her nose and mouth out! I have her sit up as much as possible! If she starts having difficulty breathing i lay her tummy on my tummy and pat her back! Usually she either spits up or she just had a lot of snot/drool in her mouth/nose/throat! 9 months - a year old is typically when they do surgery to close it!

Any moms here with a baby that has a cleft palate?????advice

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