Loooong post. Baby in hospital. Need help. UPDATE #17 - Page 2

[2boyzmama]

Give you both some time to rest/recuperate, then take her to her primary care dr and ask for a referral to a geneticist. It can take months to get seen, so don't wait. Maybe there is something underlying, maybe there isn't. A geneticist will be best equipped.

Show the ped her sacral dimple, that should be followed up on.

And about the blueness...my middle son turned "dusky" when he cried, but he never desatted. To this day he has a bluish-tint around his eyes and on his forehead (particularly between his eyes). Respiratory therapy and pulmonology checked him very carefully and never found concern (he has other pulmonary issues they monitor though) I had a dr say "he's just a 'white boy!'" LOL!

[anj_rn]

I agree with the PP, take him to your pediatrician and show him/her what you see and what the docs said. He can refer you to specialists as well, in a non-urgent setting.

On the issue of reflux, some children have "silent reflux," or reflux with no symptoms except turning blue. The only way to diagnose it is by pH probe, (a tube places through the nose into the esophagus for 24 hours). SInce this is very invasive, some docs choose to treat the suspected reflux for a month and see if symptoms improve.

I am sorry you are on this road, it sucks when it takes a while to get a diagnosis.

[askew]

I am surprised that in her million dollar work up they did not do a chromosome test. That is how they found my dd's deletion. The NICU was covering all bases while telling me they were sure it would turn up nothing. I would ask your ped to refer you to genetics and pediatric neurology. Both usually have long wait times to get in, but those two specialities seem to get to the bottom of things the best.

[sbgrace]

The pinky thing..all your kids will have it to some degree as do any siblings you have (your mom's kids). It's a dominant trait. So I'd cross that off your significant list as you're researching given you know it came from mom (to you, to baby). My son's is so obvious. I never knew mine was even bent until the ped. ortho pointed it out...turns out my other son's is a smidgen as well. My dad and sister have more obvious clinodactyly like my son.

I'm glad they are sending metabolics. Do follow up on the spine.

[pixiekisses]

My gut feeling and mum instinct is always right. You should trust that. s

[magentamomma]

my son was hypertonic, and it created lots of breastfeeding dificulties, and one daughter was as well, and she was very colicky. It didn't cause the level of problems you are describing. I haven't googled it, so I only know what I know from LLL advice, swaddling helped alot with these two kids. I think you are right to trust your gut. Keep up the good hard work of advocating for your baby.