The kids are alright

Now that Mike and I are feeling a little better the girls are starting to have some trouble coping, we wonder if maybe they can sense us lightening up a little on some level and now feel like they can let go...Rachel broke down and confessed to feeling pretty blue about everything...I won't say much about it here because she is a teenager and I want to respect her privacy. Anne Marie has been pretty sad and wanting to talk about Sophia a lot. She asked me the other day why there was tape on Sophie's mouth at the hospital when she died. I don't remember her ever mentioning it before so I can't help but wonder if this question has been floating around in her little head for 3 1/2 months....it was a trach tube and it really bothered me, although my memories of the hospital are foggy enough that I can't remember whether she was with me or not when I asked the nurse to take it out (she wouldn't). Annie told me that she didn't kiss Sophie at the hospital because her lips were purple and that she was sad she didn't kiss her. I told her she kissed her so much when she was alive and that was what really mattered. Annie is also worried that Sophia is all alone, it really seems to bother her. I tried to tell her that Sophie has lots of playmates in heaven but she wasn't buying it (She can't move, Mom). It is so hard not to be able to take the girls pain away...not to have the answers to their questions. One of my biggest regrets about this whole thing is that Annie had to witness it all. She was with me when we went to get Sophie out of bed, must have been totally bewildered by my screaming for Mike, his giving Sophie CPR while I was on the phone with 9-1-1, the police and paramedics coming and taking her away. I am so grateful that Rachel wasn't here, but I wonder if she might feel bad that she wasn't...I hope in time the trauma will fade for both of them and they will be left with happy memories of their baby sister (who as Annie points out was a "very, very, very, very, very, very very, very, silly baby)

On the Anne Marie health front, we are working with her doctor to get another blood test to make sure her vaccines have done their job, that will be good information as there seems to be a great deal of controversy over what an elevated pit count (above normal but not in the dangerous zone) means. Hopefully that will come back with good news and we can worry a little less...I hope that I am not paranoid about losing one of the other kids for the rest of my life...We also have a medical geneticist on our to-do list. And I got a response from the Department of Public Health, which I will share here soon.

Mike and I are doing pretty good, I'm fighting a sinus infection and fever, yuk....but we are getting stronger every day, just miss our little angel more than you can imagine....

More questions than answers

Well, we now know Annie has a spleen and that it appears to be functioning (see previous post), but we are still waiting the results of two blood tests...we aren't really worried, but it has been two weeks so it would be nice to know.

I have been really struggling the past few days, frustrated by the lack of information about a) Sophie's condition and b) what happened in the ER that night. I finally took the step of going to the library and pulling all the journal articles that we keep seeing on Pub Med. One of the references was to a text book Human Malformations and Related Anomalies which had a chart showing that Asplenia and hemivertabrae are linked. That was a gut punch for both of us, and we want to get in front of the orthopedic doctor she saw to make sure he knows that. If it could prompt him to recommend an ultrasound for even one child with hemivertabrae and it saves them it would be worth everything. Another article that I have been curious about is one that suggests that when a child has recurring sepsis infections a doctor should check for asplenia. My question still is what would prompt them to check for a sepsis infection in the first place? If high fever with very sudden onset, shaking, vomiting, lethargy doesn't do it, how does a child survive a septic infection (I know they do).

I have been fighting with this last question for a week...what happened in the ER...is it what should have happened (please, please, please) If it isn't, will anyone ever be honest with us about that? It would help so much.....Mike suggested that I call the hospital and ask them to sit down with us, which I have. I left a message for the care center director on Tuesday, just asking if it was possible to sit down with someone and review her chart, what happened that night, the decisions that were made, the doctors notes. I don't think they will, but it is worth a shot.....I have stopped obsessing over it and will just wait to hear, if I don't then I will decide what to do next. We have also requested her medical records....anyone know a pediatrician who would want to review them for us?

Most recently I have read that asplenia happens 1 in 2000 births....if it really is that common this might be the beginning of a long crusade for me to raise awareness...for now, I just miss Sophie so much, I ache, all the time. Thank God for my amazing family, my strong and loving husband, our beautiful daughters and the incredible support for family and friends. I know Soph is at peace and I try to cherish the time I had with her.....Please if you know anyone who can help with our questions have them email or call us

You want answers????

Well, we finally got the answers on Anne Marie's test, and her two spleens appear to be working fine, so finally I don't have to go in every night and make sure she's breathing....and the morning anxiety attacks have lessened. The hematologist at Children's hospital still wants to do one more test to confirm that the spleen(s) are not working overtime, but they said they have no reason to suspect it, so we are not too worried at this point. Breathing a little easier on that front helps.

We are still questioning the genetic component of it all, but in general the doctors don't seem to think there is a connection...Mike and I find it strange that of our two biological children (Rachel was adopted by Mike when he married her his ex--her Mom) one didn't have a spleen and the other had two....not really sure where to go with that, but we will probably keep hunting in the future.

I tried not taking Ambien the other night--what a disaster--at 4:00 a.m. we were basically all up (thanks to me) and Mike and I had a long conversation about what might be going on. He astutely pointed out that although I keep claiming to want to go to therapy, I haven't taken any steps to that end. I think he is mostly right, but I am also giving some credit to the fact that I do not seem to be able to make even the simplest decisions right now. Anyway, we have an appointment for tomorrow.....

Things are pretty relaxed at home right now, I really miss Sophie so much..I hate that our mornings and evenings are quieter, less rushed....I'd give anything for her to be pestering me for dinner, bath and bed. So far the hope that his blog would lead to someone else who lost a child to Asplenia or some researcher who knows something hasn't worked, but I'll keep it up because it helps me....