Update on Emily

I am staying at the hospital with Emily and Bob is home with Avery.



After a Barium swallow test, the speech path/swallow expert saw that milk is getting into Emily's nasopharynx (between her nose and throat) when she eats/drinks. This is creating mucus in there that we cannot get out by suction at home. Therefore, after so long of not getting that stuff out it just finally clogged her up and she couldn't breathe. I am making the nurses suction her out with their high powered machine a few times a day. This seems to be helping dramatically. We thickened her milk to help gravity keep it going down, not back up into her nose/throat. Hopefully this will help until her anatomy is mature enough keep the milk where it is supposed to be.



The other problem is constipation. Apparently the hernia she has is from pushing and grunting so hard from not going to the bathroom. The GI specialist examined her and the hernia last night. We are giving her 1ml of milk of magnesia in her milk to get the pipes flowing. It worked!!! It seems she might be getting better.



So, keep in mind that the main problem is that she stops breathing and drops her heart rate often. Mucus caused these things in her nose and constipation when they grunt/strain they hold their breath which drops her heart rate -- vagal response. These issues may sound like the sniffles and trouble pooping....basic baby stuff that goes away. But, they can be detrimental. We should have followed our gut once again and pushed these issues when everyone in the NICU told us its just "normal preemie stuff" or "paranoid". We are not idiots. Lesson learned AGAIN, you have to push and second guess everything.



The apnea monitors have a memory card in them that records all of the A's and B's that occur. When the NICU got this report they were shocked at how many episodes she was having. No kidding, we have told everyone we have been complete wrecks the last week with the number of times both of them stop breathing and turn blue. Can you imagine your babies turning blue in your arms? It's not fun. Now imagine it happening 20 times a day -- per kid. Unacceptable. The stress is tremendous. At least now they are paying attention to us.



By the way, when we mentioned that Avery has many events also they want to admit her as well. If this is what it takes to get them healthy we will do it. Doesn't it seem like it would have been easier to run these tests in the NICU??? Why are they experimenting with these babies by sending them home? Will they sink or swim? Not their problem any more once they are discharged, so why not get them out as soon as possible?

They are both gaining weight, yeah!!! Emily - 4 lb 8 oz and Avery 5 lb 12 oz. Avery is a CHUNKY MONKEY!!! :)



Heather