Having a baby with multiple congenital anomalies... how were you coping?

[longix]

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Count my prayers. I have a nephew with some disorders. Not easy but never hopeless.

[mybuuz]

i have a niece just like your baby's situation. Measles pud ako sister by her 1st trimester.
adviced to abort ang baby but they hold on gyud until the baby was born.
she never had an operation kay she won't survive it. the doctor even predicted she won't last a year after birth.
now my niece is amazingly 20, we've survived all the pains. she's severely autistic and violent.
with hole in the heart, fading eyesight due to cataract and deaf.

so imagine, mao gyud iyang situation sa movie nga The Miracle Worker.
my sister resigned and nag-full time mom.
salamat lang sad kay nakasulay siya ug makakita for years so she knows sign language first then braille now.

wala gyud manghud, mao pud kapait. dugay pud nasundan ug mga cousins, baby gyapon siya sa tanan.
we are still happy we have a living angel, we know she'll be in heaven someday.

[Kagami-chan]

Count my prayers. I have a nephew with some disorders. Not easy but never hopeless.

I believe so too, di gyud siya lalim atimanon labi na almost every night mag hilak nya sometimes damanon pa siya kalit lang hilak. Sleepless night, stress, etc... Naa gyud na pero we don't mind. He is such a blessing to us.

i have a niece just like your baby's situation. Measles pud ako sister by her 1st trimester.
adviced to abort ang baby but they hold on gyud until the baby was born.
she never had an operation kay she won't survive it. the doctor even predicted she won't last a year after birth.
now my niece is amazingly 20, we've survived all the pains. she's severely autistic and violent.
with hole in the heart, fading eyesight due to cataract and deaf.

so imagine, mao gyud iyang situation sa movie nga The Miracle Worker.
my sister resigned and nag-full time mom.
salamat lang sad kay nakasulay siya ug makakita for years so she knows sign language first then braille now.

wala gyud manghud, mao pud kapait. dugay pud nasundan ug mga cousins, baby gyapon siya sa tanan.
we are still happy we have a living angel, we know she'll be in heaven someday.

I feel for your sister. But such babies are God's blessing. Your sister was blessed to have an angel like her b'coz God knows she will love her more than herself. Nag subchorionic hemorrhage sad ko pag pila pa siya ka weeks, was so scared kay ambi namo makuha siya. Good thing ni heal ra intawn. Daghan sad gyud ko gi agi-an pag buntis nako niya... It's as if there's something that's preventing him from being born! But the prayers do work miracles, God protected him all the way until he was born. Cried the 1st time I heard him cry kay I thought and we expected that the baby would be weak but he is not.

We are still yet to know unsa kaya iya condition as he grows kay he's so small pa karon, smaller than the average 5months old baby's size ug weight. Delay siya in many parts labi na sa pag held up sa iya head kay gamay paman siya ug shoulders, di pa kaya. I hope after his PDA Ligation kay mu improve unta iya weight.

[sammedriano]

i have a niece just like your baby's situation. Measles pud ako sister by her 1st trimester.
adviced to abort ang baby but they hold on gyud until the baby was born.
she never had an operation kay she won't survive it. the doctor even predicted she won't last a year after birth.
now my niece is amazingly 20, we've survived all the pains. she's severely autistic and violent.
with hole in the heart, fading eyesight due to cataract and deaf.

so imagine, mao gyud iyang situation sa movie nga The Miracle Worker.
my sister resigned and nag-full time mom.
salamat lang sad kay nakasulay siya ug makakita for years so she knows sign language first then braille now.

wala gyud manghud, mao pud kapait. dugay pud nasundan ug mga cousins, baby gyapon siya sa tanan.
we are still happy we have a living angel, we know she'll be in heaven someday.

It's a blessing in disguise. I feel for you and am wishing all the best for her and the family.

[Kagami-chan]

i have a niece just like your baby's situation. Measles pud ako sister by her 1st trimester.
adviced to abort ang baby but they hold on gyud until the baby was born.
she never had an operation kay she won't survive it. the doctor even predicted she won't last a year after birth.
now my niece is amazingly 20, we've survived all the pains. she's severely autistic and violent.
with hole in the heart, fading eyesight due to cataract and deaf.

so imagine, mao gyud iyang situation sa movie nga The Miracle Worker.
my sister resigned and nag-full time mom.
salamat lang sad kay nakasulay siya ug makakita for years so she knows sign language first then braille now.

wala gyud manghud, mao pud kapait. dugay pud nasundan ug mga cousins, baby gyapon siya sa tanan.
we are still happy we have a living angel, we know she'll be in heaven someday.

By the way, wala gi operahan iyang cataract?

[noearthko]

Stay strong TS!

[Kagami-chan]

Stay strong TS!

Thank you.

[medjz]

ot: pls advice ur preggy sisters, cousins, friends to stay away from those persons having measles(german), when i was pregnant i was paranoid pud ani even kana lang mag sneeze, coz grabe jud ni syag igo sa baby...

ang baby pud saku cousin kay naa pud multiple hole sa iya heart, evry 3 months mag 2decho sya, in God's grace nagkagamay ang hole, hopefully maclose unta tanan. naa pud sya cleft palate ug efeed sya through tube. luoy pero karon mahagwa2 na sya, mukiay2 na pud.. hopefully maoperahan na sya soon.

TS may God bless u and ur baby...

[marvineca]

looya sad sa mga baby noh.!!

[mybuuz]

By the way, wala gi operahan iyang cataract?

only solution is Cornea transplant and possible mobalik gyapon iyang cataract after pila ka years.
dili man pwede siya operahan kay since autistic and voilent pa gyud siya, iya unya hilabtan iyang eyes while healing so mabuta na hinuon siya. dili siya pwede i-confine sa hospital kay dili niya usual environment, she won't like it. maglisod gani mi ug pa blood test, kusgan kaayo dili mapiog.