Dear Abbey...mind your own business

On Tuesday, my wonderful neighbor Norma stopped me when I was on my way to work, she was teary eyed and told me that she had ready my letter in the paper and wanted to help me. ????? Well it turns out that someone wrote into Dear Abby and said that they lost a daughter named Sophia in April from a complication from a birth defect and were struggling to write thank you cards (http://www.denverpost.com/search/ci_6643339) My neighbor thought it was me and was offering to write my thank you cards for me...it wasn't me. Abby's advice was to get those cards out, even if friends and family had to be enlisted to help. So what an amazing coincidence....or someone who is mad because they didn't get a thank you? Or my psycho former employee stalker? Who knows....if you didn't get a thank you card from me....well put yourself in my shoes. I truly appreciate all the amazing support in so many forms we have gotten from everyone and it is what got us through...I tried to thank everyone by phone, email or in person if I didn't get to you, please know I appreciate every penny, word, hug, errand, morsel of food......

We have an appointment with the geneticist in October, Annie is getting another blood test soon....we are healing slowly.....

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....

Sigh of Relief???

Last Tuesday Mike and I met with the ER doctor, his boss, the head nurse and a hospital administrator. I knew it would be tough, but I definately underestimated how difficult it would be. I started crying when we first walked in and pretty much didn't stop, thank goodness for Mike's strengh and ability to ask the really tough questions....and they were tough. First let me say that the doctors were very caring, and it was emotional for all of us. We did get answers to questions like why didn't you take blood...Apparently the advances in vaccinations that prevent so many of common bacterial infections (Pneumococcus, meningitis...) made it very unlikely that Sophia would have had anything like that (less than .3% apparently) and a blood test would have taken at least 12-24 hours to come back, so it would have been too late to save Sophia anyway.

Sophia also wasn't showing signs of being a very sick baby, she was interactive, alert and not lethargic when we were at the ER, so she didn't give the doctor indication that she was on her way into septic shock. The doctor told us that in his 20+ years of practicing medicine he has never seen a baby get a fever and die as quickly as Sophie did. Not having a spleen just made it so fast and overwhelming.

We are still processing everything, I do feel much less anxious now though, and I believe that the hospital staff is sincere, that they had done an internal review and belive that they did the best they could given the circumstances. I miss Sophia so much, the feel of her cheek against mine, what it felt like to hold her, and even her streaking down the hall when I was trying to dress her. Anne Marie, especially, seems to feel the loss of her sister's presence lately and I wish I could take her pain away. We have coffee cups that have a little cartoon of each of us on them and yesterday Annie asked me if we shouldn't wash Sophie's picture off because she is dead--it took everything I had not to lose it.

We are still working on getting some answers regarding the status of Annie's spleen(s) and to make sure she has all the protection she needs. I think the Children's doctors may be able to help us with that, so I am going to follow-up with them right now......