Sunday, June 28, 2009

6 months approaching

Yup, 6 months is approaching, and it is hitting me hard. I haven't been sleeping, and I don't really know what to do with myself. I have put a lot of energy into the headstone fundraiser. But at this point I am discouraged. it has petered out, I don't know any other places to post about it, and asking others to repost it hasn't gone well. I just don't have a big enough presence on the net I guess. I have done about as much in her baby book as I can. I am just running out of things to do for her. So what do you do when there is nothing left?

I guess I will find a new video for the front page.

Here is Genevive the morning that she got sick. I have watched this a lot to see if there were any signs that I missed. I had her out for a couple hours.

Thursday, June 25, 2009

Headstone drawing

We are leaving to get some quotes on the headstone. I appreciate everyone who is posting about it on their myspace and facebook etc. Here is a rough drawing of what we want, but it may change when we get there and get an idea of pricing and what is available etc.

Well I took that drawing down, since after headstone shopping some things have changed. Right now the stone is still being decided on, LOL. I did see one that is perfect, but I am concerned because it is more expensive. I am in contact with several headstone companies right now.

This is the one that stole my heart

But man, see that price tag! plus its a mail order company, not sure how to deal with this. Why isn't there a "what to do when your baby dies" book.

Friday, June 19, 2009

We may have a headstone

I am so excited!! With some encouragement from a fellow angel mommy, I made a chipin page to try to raise money for the headstone. I put it on the sidebar, if anyone wants to help you can make a donation through paypal.

I would sure appreciate it if people could spread the word perhaps on their own blogs?

I am going to go shopping for a headstone this week. I think perhaps if I had an amount to aim for it would be better. I am so thankful there are people out there kind enough to help one mother through this pain.

Thursday, June 18, 2009

Autopsy Results and timeline with photos

I was slow getting this typed out. I was waiting for a time I was up to the task, it is an emotional thing. The results are comforting. They confirm she would not have survived no matter how hard we tried. She was much sicker than we knew. However comforting though, it was still difficult.

When she was born she weighed 3lb 1oz. The day she got sick she weighed Just under that, she was just reaching her birth weight again. When she passed away she was 5.2 lb mostly fluid from the swelling. They weighed her organs and gave what the normal weights should be. Most of them were much heavier than the norm, I assume from the extra fluid.

The clinical diagnoses precipitating death was NEC (Necrotozing Enterocolitis) and Respiratory failure. She had 34 centimeters of small intestine remaining, and 8.4 centimeters of colon. This remaining bowel showed necrosis and was also dying, so they did not remove it during her second surgery since it would not have saved her anyhow. She had some scarring and meconium in her abdominal cavity from where her bowel perforated, this caused severe neonatal septicemia (sepsis).

Blood taken from her heart tested positive for Klebsiella Oxytoca. This is the same thing Lillian had a week or so after genevive passed away, Lillian's was in the spinal fluid, not the heart, it was what caused her meningitis. This is significant, Genevive was fighting two things at once, NEC and Klebsiella.

Because she was so sick, she had serious blood pressure drops after her first surgery, it was fairly low most of the time really, largely due to the sepsis. This stress caused hemmoraghing in a lot of her major organs. And the lack of oxygen cause neurological damage, and necrosis in her liver. If she had survived she would have needed a bowel and a liver transplant. Plus she would have been a vegetable or have serious cerebral palsy from the brain damage.

Completely unrelated she had a congenital cystic adenomatoid malformation in her left lung. Her right lung had 3 lobes, her left lung had 2, where the third lower lobe should have been she had non working malformed lung tissue. Also in the left lung, not sure if the same lobe a Bronchial Atresia. Basically her left lung wasn't very useful. They said it would not have affected her life much.

TIMELINE (hope this doesn't bother anyone, I did it for me, but I think it really shows what NEC does.)

January 12, 2009
I left the hospital at about 5:30 pm she was perfect, we played, she smiled, and she went to sleep when I left. She first showed signs of having an issue (bloody stool) at 9pm, xray was clear. NEC showed up on the xray at 11pm.

January 13, 2009

She was very sick and xray showed bowel perforation at 1:15am and she was in the first surgery by 3am.

She came back looking much better. Red instead of green, and much less swelling in the belly area.

She continued to need a lot of intervention throughout the day. Her blood pressure was very low, and her respiratory performance wasn't great. At 10pm that night we had her baptized. She was switched to a jet ventilator shortly afterward. It shook her belly very hard. They said if that doesn't work there are no other ventilators to try.

January 14, 2009

By the morning of the 14th they decided she just wasn't doing well at all. She was much more swollen from all the fluids they kept having to give her to get her blood pressure up. They decided to do a second surgery to see what was going on in there that started at about 10:30am. It was very quick, afterward they told us that the rest of her bowel was dieing and she would not survive this. They gave us the option to wait and see how long she lasts, or to take her off the ventilator. We decided to spend some time with her and take her off the ventilator later on so she could die with us and not on a table. We called friends and family, and decorated the big family room. Around 2pm her blood pressure had a serious drop and we were told there was no more time, if we wanted to move her we would have to do it now. So I picked her up and we moved to the big family room. We removed everything except her pain medication. My mom wasn't able to get there in time, but Genevive was done fighting.

She passed away in my arms at 2:46pm. I think she was not in pain, she seemed peaceful.
Here is the photo taken the moment she had passed.

I miss her terribly.

Thursday, June 11, 2009

I am a slacker

I should have blogged and told everyone I was going on vacation. Well Surprise! We went on vacation, LOL. Our wedding anniversary is June 5, and we go to the beach house where we had our honeymoon each year. So we went and had a great time.

But while we were there we got a call on our cellphone about Genevive's autopsy results. SO we made an appointment to go have the meeting with the doctors and social worker on Monday. It was tough for us so we stayed for another 3 days to relax afterward. But we are home now. I will post a detailed post about the autopsy when I am ready.

In the meantime look what a wonderful lady on the NILMDTS forums did for me! She is retouching some photos of genevive and Lillian. She is very talented, I am thrilled with the two I have so far, Here are my babies:

Genevive wasn't she so cute and wrinkly and hairy!

and one of Lillian's two month photos I did in the NICU. She removed her feeding tube.