Happy Birthday Genevive

Well this is certainly worse than Christmas. I got up, sang to Lillian, and have spent all morning doting on my little girl. I thought I was doing fine. Then I just burst into tears. I didn't feel it coming, not sure where it came from or what set it off. And now I can't stop it, I am such an awful mom. Poor Lillian.

Merry Christmas

Christmas is here. We had a lovely morning. I hope the holiday is being gentle on all you angel moms. I am off to the cemetary.

I feel so blessed

It's Christmas eve. I have been dreading these two days for months. Doomed to put on a brave face and force my way through family functions and festivities, while no one mentions my precious baby or acknowledges she existed. Stuck in a bout of depression, missing a piece of my soul. But I was dead wrong.

This photograph changed everything!! I belong to an art community called Deviant Art. They featured this photo as a daily deviation. I logged in and found 1149 messages, comments and a few private notes in my deviant art. I cried, to think when I thought no one would remember her, thousands of people had looked at her photos and read her story. I hope at least one of them got something from it, awareness about infant loss, awareness about Now I Lay Me Down To Sleep, or even just Oh what a cute baby! (that last one is my own selfishness LMAO)


In response I will post the story of this photo, Being one of my favorites.
We had already been told she would not live for another 24 hours. And my sister Melanie had called in family. We were in the Nicu bay waiting for all of my family to arrive. The plan was to move her to the family room for her last moments after everyone arrived. However they underestimated how bad off she was at that point, and her blood pressure was dropping rapidly. They told me I had no more time. I didn't want her to pass away on the table like that. So we decided to move her then, even though my mother hadn't arrived yet. The nurse had gotten a blanket to wrap her in and unplugged all the tubes except her ventilator and pain med. And I lifted her up so they could put her blanket underneath her. And it was the first time I could hold her since she got sick. I can't describe what that moment was like, she was shaking because the ventilator was a special kind that shakes them hard. And her belly was a little hard from the surgery and swelling. She was very red and very warm. I can remember kissing her and I can remember snuzzling her belly a little. Then we put her back down, wrapped her up and walked her to the family room. My mother finally arrived just a couple minutes after she passed away. She was coming from two hours away. I was greatful she was surrounded by family when she passed. I am also greatful Genevive told us it was time to go, I am not sure I would ever have been able to make the decision to move her myself.

Genevive's xmas ornament.

Isn't it gorgeous.
And I needed something to give Lillian during her photoshoot, she learned to roll and to get up on her knees so its hard to get her to sit for photos. I thought the box is so pretty that will be perfect to distract her. But she managed to get it opened! The photos actually came out gorgeous. And I think there is something poetic about lillian playing with her sister's ornament.

Feeling a bit better today

Last night I was blessed to have a long conversation about Genevive with my sister Pauline. I believe it started because I mentioned that I don't know how I will be on Christmas, I expect to have a hard time. And somehow it ballooned into an hours long conversation. We shared memories and regrets, we spoke about the day she died and various feelings and things we remember. Things I missed and what other people were doing while I was preoccupied. How it affected Pauline herself (she had a preemie in the NICU at the time as well).

See the photo up top there, That diaper cover was made by Pauline for Genevive. She made it while she was still stuck up in the high risk wing of the hospital waiting for Bella to be born. We were both in the high risk wing together, and gave birth a week apart, both at 29 weeks gestation. Crazy coincidence huh. She made an orange one for Lillian, and I said I need a purple one for Genevive with a heart on her butt! And she made it! I love that heart butt photo. I wasn't able to put real clothes in them yet, but they let them both wear their fleece diaper covers.

During the conversation I got out my photo album and started to organize the photos a bit better, a project I had been wanting to do for a while. I feel so good. It was so nice to hear someone talk about her, and say her name. And to get to just get out some of my feelings too. And look at her photos, and all the cute things she used to do.

Today I also got the ornament from the Now I Lay Me Down To Sleep ornament exchange. It is a gorgeous palm sized silver heart locket. With a ribbon and a silver heart halfway up the ribbon that has 2009 engraved on it. The locket heart has a tree of life and says "We never lose the one we love - they live on in our hearts" , when you open it on the left is engraved "Genevive 1-14-09 Always loved and remembered" and the right has a frame for a photo. and there is a dangling crystal on the bottom. I will take a photo of it in the morning when our house has light. It just melts my heart.

11 months

11 months, that seems so close to a year. Two weeks until her birthday, a week and a half till christmas. Lots of milestones and no joy whatsoever. I swear I am a miserable mess.

I was on the way to my sister's for game night and we passed a church with a wreath on it, it was green with some white sort of berries or flowers on it, and a large purple bow. It was so pretty and it reminded me of Genevive, and I wanted it so badly, and next thing you know I am balling my eyes out half the trip to my sisters.

I can't wait till this whole season is over, I am already tired of going through the motions.
A year ago I was in the hospital getting ready for Christmas and looking forward to having two beautiful babies. I had no idea what was to come in just a couple of weeks.

Instead of Barbara lets say "Genevive"

An Elephant in the Room

There's an elephant in the room.
It is large and squatting,
So it is hard to get around it.
Yet we squeeze by with "How are you?" And "I'm Fine."
And a thousand other forms of trivial chatter.

We talk about the weather.
We talk about work.
We talk about everything - except the elephant in the room.

There's an elephant in the room.
We all know it is there.
We are thinking about the elephant as we talk together.
It is constantly on our minds.

For you see, it is a very big elephant.
It has hurt us all.
But we do not talk about the elephant in the room.

Oh, please say her name.
Oh, please, say "Barbara" again.
Oh, please, let's talk about the elephant in the room.
For if we talk about her death,
Perhaps we can talk about her life?

Can I say, "Barbara" to you and not have you look away?
For if I cannot, then you are leaving me

Alone...

In a room...

With an elephant...

Terry Kettering

Sorry everyone that i am absent again, the holidays are defeating me.

I'm going slightly mad..

You know that queen song.... Yeah it's been stuck in my head all morning. I really am going mad. I could elaborate, I could bitch, I could yell, I could vent, but what's the point. I am insane, it would just be the meanderings of an insane woman.

One another note I was so disappointed I couldn't do a butterfly release for Genevive's first anniversary. But I found the perfect alternative and have found a bit of peace over that. Not telling yet though until I know its a set thing.

I love you all

Friendship is born at that moment when one person says to another,
"What? You too? I thought I was the only one." -- CS Lewis

I am going to let you in on a little secret.... I want people to read my blog. Now I know I have said I blog to help me in my grief, It doesn't matter if people read it. And it's true, that is why I blog, but when I check my blog and see that little comments button It makes me happy. The fact is I want my baby to be remembered so badly and this blog is the only really tangible proof she is. No one comes to this blog for anything but to read about Genevive, that is all it is about. For a millisecond I wanted to blog about other things, but it never felt right. This is Genevive's space and when people come here they are gonna hear about her. Now in the way of blogs this one is a dud, it has never taken off. It was even featured on the local news but I still don't really get traffic. However I have a faithful blog following of 5. That is what this post is about. A night like tonight when I feel bad and need something I can come here and vent and I know my 5 faithful blog followers will read it, and be angry with me, and feel it is unfair that Genevive isn't here. Others have popped in once or twice, maybe I scare them away. But my faithful 5 aren't scared by raw grief, they know what it is like, and I know almost everytime I post 2 or 3 of them will come be my cheerleaders.

Catherine - I ran into Catherines blog one day while surfing the web. Our stories are similar and my heart darn near skipped a beat. She had twins and lost Georgina in early infancy just like me. She so eloquently says all the things in her blog that I wish I could say in mine. The first time I read through her blog I had tears streaming down my face for hours. I do not know why this one blog touches me so deeply. http://betweenthesnowandthehugeroses.blogspot.com/

Melissa - I met on a support forum, her angel Calypso passed away from NEC just like Genevive. Thier stories are similar and it is nice to know somebody who has been there. I haven't really found anyone else who has a baby who died from NEC and that makes me sad. She has a whole bunch of websites and memorial sites and activists sites, she is a busy bee in the infant loss world. So I will link to my personal favorite. http://www.calypsosocean.com/

Brittanie - I met Brittanie through my Due Date Club, we were pregnant together. She lost her baby Cora in a past pregnancy, and has been very supportive. She maintains a family blog, and has recently started one just for Cora. http://corarei.blogspot.com/

Debby - I am not sure why she keeps coming by, I have been kind of rude. She keeps offering me this handkerchief and I have not answered her once! I don't mean to be rude, sometimes my grief hits me weird like that. I DO want it in fact, and someday when I really need to I will email and say I need a hanky for my tears. Hopefully she will still want to give me one. http://wwwforyourtears.blogspot.com/

Nan - I found her through her blog about her triplet angels Shelby, Megan and Lynne. She has a beautiful garden she maintains in thier memory and blogs about it often and about her journey through grief. http://rememberingourtripletangels.blogspot.com/


So there. I remember all of your angels and causes just like you guys remember mine. Hopefully some other people will remember them too. I don't have a large following, but in the least the 5 of you now know about each other ;-P I love you all.

We need some happy thoughts.

I have been in such a slump, people are going to stop reading my blog because I am so darned miserable! So lets try a happy post. I am glad to have had my baby, here are some happy things about her. I am also going to try to find different photos. I tend to always post my specific favorites, but in actuality I have thousands of photos of her, Yes I am a bit obsessed, I didn't want to miss anything. I was never in that nicu without my camera. Did you know you can click on the photos to see them larger?

When the twins were born I saw Lillian first. She had less trouble, they got her stable quick and brought her over. I was able to touch her and talk to her for a while, because they were working on Genevive for so long. By the time They brought Genevive over to me the anticipation was terrible. When I finally saw her my heart melted instantly, she looked just like my Alex when he was born. Same little nose and lips. Here is Alex when he was born, and genevive underneath.





She had the bestest hair all over her. Beautiful silver hair. My sister in law called her a yeti, LOL. Here's a photo, I am so glad I took this.




Genevive loved skin to skin, and she had no real time limit. Lillian was so small back then it was limited to a half hour or she would get cold. But genevive was meatier, and I could hold her for hours skin to skin. I would hold her a little sideways and talk to her and she would look right up at you, and move her mouth like she wanted to talk, she was sooo cute.


When I was pregnant we decided to color code our babies. We chose purple for genevive and Orange for Lillian. Reasoning was Lillian was originally a boy, LMAO. I am so glad we did this, the hospital was awesome about it, and the nurses would go find little color coded hats and blankets for them. Genevive had a lot of purple things. Now it has given her more of an identity in my mind, when I see purples, greens and creams it reminds me of her. And so do flowers and butterflies. She always had beautiful flowery purple and green quilts I think that is why.

I love baby yawns!! I hate head IVs!!

Genevive loved to suck! If her binky fell, she would suck her thumb. We had daily ultrasounds when I was in the hospital that last month, and she was always lounging and sucking her thumb, LOL. Even in utero she was very laid back.



Well that is all for now, Or this post will be a mile long. Wasn't she awesome! It is amazing how much of an impact she made on us in such a short time. She had a huge personality. Angel moms what are good memories for you? What makes you happy in all this sadness? we should all make a happy post, I had fun.

So is this how it is now?

Since just before the 9 month anniversary I have felt a huge change in myself. I know I ranted about it before. I assumed it was the usual build up to the milestone and then like before it would pass. But it hasn't. I have an anxiety disorder which causes physical symptoms when my anxiety is really bad. I remember when genevive passed away and Lillian was in the NICU with meningitis it got so bad at one point, I had lightheaded spells constantly, and the tip of my tongue would go numb. Once those two things start happening I know my anxiety is out of control.

I feel like I am back in those days, when things were at their worse. I am walking around in a fog, I am either preoccupied with genevive and doing things in her memory or planning the one year anniversary. Or I am Obsessively crafting or playing a game, something I do to distract myself when things get to be to much. I am having a lot more panic attacks than usual, and am lightheaded a lot. And the big issue is I can't sleep, Look it is 4:15 am and here I am typing away and crocheting. For weeks now I will lay here for hours, not able to sleep. I can sleep during the day when Alex is in school and Eddy is awake. So my schedule has turned into be up all night and sleep from 8 am till noon or so. I have tried not sleeping during the day hoping I would just be so tired I would sleep, but that didn't work. And when I am trying to sleep and can't that just makes me more anxious.

What the hell is going on? Been there done that angel moms, please tell me this isn't some sick sort of pre-one year anniversary buildup. I don't think I can handle this for the next 2 and a half months. And over the holidays to boot. How was it for you guys during that 9 month to one year period? Mom's with twin losses how was the first birthday?

I am dreading the holidays, Trying to celebrate Lillian's firsts while I miss Genevive is exhausting. Normally I go way overboard for Halloween and this year I have hardly done anything. I made her costume, that's it. I really have no plan on how to get through this time of year. Their first birthday is December 29, right after Christmas. Talk about a double whammy.

I am really kind of sick and tired of this whole grieving process.

9 months today

Sigh, time keeps marching on. It feels like it should stop. Some women post such beautiful poetic things on their blogs. I am a bit jealous, I don't have the words that genevive deserves. So I will just say I miss her, and I love her, and there will always be a special place in my heart for her. And I think those are the important things to say anyhow.

Wow, grief sucks

Grief really does move in stages. I can think of several time periods that I have felt distinctly different, and handled it very different. I think I entered a new one now, and I don't like it very much.

Seeing babies after genevive passed away has never bothered me. I have a baby myself, and a baby niece, and lots of babies in my family, and babies make me happy. Same with pregnant women. All of a sudden now I am SOOOO angry. I am angry at the billion people I know that are pregnant right now. I am angry at the people I know who have twins and triplets. I am angry at people who have more kids than me. I am angry at people who have less kids and say NO way to having more like its is such a terrible thing. I am angry at the other angel moms I know who seem to have such a huge network of support. I don't quite fit into those networks do I, why? Why do they have so many more people to talk to, I lost a baby too. I am just so so so angry. And I am so so so jealous too.

I wish I had more kids, I wish I were pregnant. I wish I could have just one more, I settled on having three kids, three is just right. Although in the back of my head I know I don't want one more, I just want my third one back.

In one weeks time she will have been gone for 9 months. And really who cares. 9 months isn't very significant, what makes it so special, why is it so hard. I hate this, I went through it at 3 months and 6 months. Each time it is different, but its that same feeling of impending doom. And I sure do feel all alone.

Sometimes there are no words

So here is a lovely photo from say it with flowers.

The news story

Our news story showed today. I think it was great. Although the part where I talked about now I lay me down to sleep was cut out, but I understand they had to fit into a certain time. Anyone want to see it?



Tell me if I sounded like a lunatic. And don't mind my Rhode Island accent, I can't help it.

If you are dropping by from the news story, Please leave a comment. Blog comments make us feel good, I love getting them.

A day of phone calls!

PHONE CALL NUMBER ONE: So today Walt Buteau called me to say that all put together the story is fantastic. He said all the elements we were able to provide like the video and photos, and Eddy's singing just went together with their techniques to make a touching piece. I have to say I am so impressed with how nice he and John (the cameraman) were, it was enjoyable working with them. And I am glad he called today to follow up, it wasn't necessary on his part and I really feel like they care.

PHONE CALL NUMBER TWO: SO I thought about it and decided to call our NICU social worker and tell her about the news story. Just in case any of the NICU people involved with genevive and Lillian are interested in seeing it. She is going to let people know. I am always a bit worried in these cases that I am deluded and people aren't nearly as interested in my baby as I am. But hey, I felt like they really cared for her when she passed away. If I am wrong, hopefully no one will tell me, I would much rather think she is remembered and loved.

Now, just in case anybody from the hospital do watch the news and come visit my blog I want to take the oppurtunity to post a big thank you. I had one Preemie pass away and one Preemie come home with no long term issues. I can honestly say I have seen the best and the worst of the NICU. Women and Infants is amazing. The support I recieved when genevive passed away was moving, They let us take our time with her, and helped us when we felt lost. Going back to the NICU the next day was terribly hard, but when I got there I got so many hugs from people I didn't even know. They helped me so much more than they realized, for a while the hospital was the only place I felt good after she passed, just because I felt like she wasn't forgotten while there. Anywhere else it felt like the world moved on and no one remembered. I appreciate everything the hospital personnel did for me, and I will never forget any of you.

In closing let me find a memory for the front page. Here was an awesome day. We had a lot of fun playing, and in fact this was the day I took my favorite photo of genevive (all the way at the bottom of this page). I was trying to leave, but she was so alert, and looking around, how could I walk away?

The interview went good I think

I was a bit nervous. But it was great to show off Genevive's photos and talk about her so much. Also they said maybe they will do something on Now I lay me down to sleep in the future! I think it would be awesome to get the word out. I told him how valuable the photographs they take are, I treasure them. We also went to the cemetery as well, and they took some video of her grave. And while we were there I was able to speak to the cemetery guy about the deeds to our plots. It was a good day. I hope i don't come across as some morbid crazy woman, LOL. But it is what it is, I hope people will take something away from this.

I will end with one of the amazing photos Jennifer Lamy our NILMDTS photographer took. We owe her so much. She spent the whole day with us, and she rushed the photos to get them to me quicker. I know she is a busy photographer and she took her time out to make our grief just a tiny bit easier to handle.

Tomorrow is the big day!

Tomorrow is my interview with channel 12. I am a bit nervous. Hope it goes well.

And look at my new necklace!I adore it, I am gonna make a photo charm of genevive to add to it. See that is her birthstone, and it says "free to fly" Genevive 1-14-09

8 months today

With Lillian I get to count, Oh she is 8 months old, we can do photos. With genevive I get to count 8 months since I have gotten to see her, hold her, sing to her. It is very unfair. I know life isn't fair, but that doesn't mean I can't bitch about it. I miss my baby today.

Opportunities seem to have a way of presenting themselves.

Did you know that infants can die? Of course you do or you wouldn't be here. The thing is, when your baby dies, it seems like no one realizes it happens. People avoid the subject like the plague, Naturally it makes them uncomfortable. But all the avoidance in the world doesn't change the fact that it happens. A lot of us who have lost our children want to talk about them. We want them to be remembered. We want people to realize it happens and know a bit about it in case it happens to them.

This morning I got a phone call from the channel 12 news. They saw THIS blog, and want to do a story on us. At first I was a bit iffy, such short notice, what will I wear, But my house is so tiny and a big mess! But I thought about it, what a way to get the word out. I can talk about my Genevive, I can remember her. Maybe someone will see it and be in a similar situation and remember my words. They will know to contact http://www.nowilaymedowntosleep.org/ and get gorgeous photos of their precious Angel. Or they will give their baby a last bath. Have I talked about the bath? Giving Genevive her bath was the single most healing thing I did. If I had one word of advice to pass along it would be to give your baby a bath when they pass. It gives you a chance to bond, and to study every little feature, and to feel like a parent that one last time. But I am rambling now.

Now I also have to admit, I was also a little excited when he said he noticed we didn't get as many donations for the headstone as we would have hoped, and these stories often lead to more donations. Perhaps I can get the original stone we wanted. I don't know why it matters so much, but we all want the best for our children, that doesn't go away after they are gone.

So hopefully this works out. If it does I may have some new visitors to my blog. So here is a video of Genevive for the front page. My first time holding her, she was three days old. Boy it was so hard to wait, but I couldn't hold her while she was on the ventilator. Please excuse my appearance, I just gave birth to twins!


And did you know I have all of my favorite photos of Genevive in an album on my photobucket?
http://s3.photobucket.com/albums/y75/delekatala/Genevive/

I apologize for my absence.

Seems like life is running away with me. I have been busy with court stuff. And of course with Lillian who is getting so big! And Alexander starts school next week. But it all caught up with me and I am stuck in bad sipping on some mint tea with a nasty sore throat. Giving me the perfect time to update my blog!

First and foremost I want to thank everyone for their help with the headstone. We were unable to raise the amount we wanted, but have enough to get a less expensive stone. I worked for hours photoshopping a picture to go on it. Here is the preview from the monument company we think we will go with, it still isn't ordered, we haven't signed a contract, we are just in planning stages. I am dragging my feet because I really wanted a better stone.

And here is the image I made for my Genevive.


I would also like to take a moment to remember all the new Angels I have heard about this week. It breaks my heart, I wish there were more I could do. Lets hope after this week we won't hear about any new angels for a very long time.

Ethan Skidmore passed away on August 21 after a long battle with HLHS. I have been following his carepage for some time, and am so sad he didn't make it. He was 6 months old.

Laurie from a stillbirth forum I frequent has just found out her baby Declan passed in utero. She was headed to be induced on Aug 23. This is not her first stillbirth, It really is not very fair. My heart goes out to her.

Also Mia a facebook friend is having a C-section today to deliver her daughter Nevaeh. Nevaeh has Anencephaly and is expected to live only a short time. As we speak I hope she is getting a long bonding time with her sweet Angel.

6 months...

Apologies I didn't post sooner. Genevive's 6 month anniversary hit us hard. I didn't sleep for a week before, and then could do nothing but sleep for a few days after. For her 6 months we made a temporary headstone, since we didn't make enough for a real one yet, but didn't want her grave empty. We weeded and evened out the dirt. Put down chipped marble. Decorated the marble with the gemstones we had on the grave before. And added a special butterfly and frog we bought for her. I hope to have a real headstone for her one year anniversary. I know of other Angel parents who made temporary ones like this and they crack during the winter. They just aren't made to handle the elements. But it looks pretty for now.

I don't know how I would have gotten by without Eddy. he is so supportive of my grief. We were having a really rocky period in our marriage for a while. I believe the twins and Genevive's death has brought us closer together.
Happy 6 months Genevive. We miss you and think of you always.

Grieving is so hard!

http://brycemoline.blogspot.com/

I follow this blog. This little guy has stolen my heart. He is not doing so well now though. And I feel myself panicking. I feel myself doing what ifs. I want to tell his parents all the important things not to miss just in case. Of course if I sent any message to them suggesting he could die that would be horrific. Why can't we save them all. I wish every pregnant woman was told about NILMDTS and to take a billion photos and stuff, just in case. Then there would be no woman who has lost her baby and said, I wish I had spent more time with them, I wish I had better photos. I wish I had more memories.

I wish I could help people more. I know how these parents feel, I watched Genevive struggle to oxygenate herself. It ultimately led to brain death and organ failure. I understand that terrible feeling in your gut. I wish I could take it away for them. I don't know why I follow these things, I think I am just to sensitive. Please pray for Bryce, the world doesn't need another angel.

EDIT: Bryce did pull through and is still fighting! I have a good feeling, I hope he goes home with his mommy and daddy soon, the NICU is such a tough ride.

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.

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

http://www.offerstone.com/Angel-Headstones/Angel_Monument_MG0455.html

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.

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.

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.

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.

Time

Today I have spent a lot of time thinking about Genevive. The more time passes the more panicked I get. The more I worry I will forget a detail, the farther away from her I feel. The stronger the urge to do something is. I don't want her life to be a waste. I would like her death to make a difference somehow, but how? I have wracked my brain, I have tried so hard to think of something! I still don't know what to do about her first anniversary. The one thing that fits is a butterfly release, but we can't because she passed in the winter. Life is very unfair. it shouldn't be this hard.

How beautiful is this baby.....

SO busy!!

We got taxes in, and so I have been very busy spending money! I bought this awesome molding compound, and made a permanent mold of genevive's hand. I am so excited, now I can use the mold to make things. I will take a photo.

Lillian is feeling much better since starting this new formula. It is not what I had hoped for, but it is a definite improvement!

Let me find a new video for the front page. Sigh, wasn't she so cute. She loved being talked to!

we are home

we spent a night at the hospital. Lillian had some blood in her stool. They decided to switch her to hypoallergenic formula. They think she has a formula intolerance, and that is causing her reflux to be so bad, and her colic. We are home, and she is snoozing. SO far so good.

Lillian is sick

Well, I really think my heart can't take this parenting thing. Lillian woke up sick today, preemies being sick is a huge deal. We will be going into the pediatricians at 1:45 and then most probably they will send us to hasbro to spend a couple days there just like last time. I hope so honestly, because I am so afraid of going to sleep and her not waking up. You read about them getting RSV and the parents think it is just a cold. Well I think this is just a cold, but what do I know? They will do a test in the Dr. office. I am so paranoid.

4 months ago today....

We said goodbye to our baby. Dooming me to a fit of depression around the 14th of each month. Boy, I sure miss her. It is so unfair. Just enough time to get completely attached, and then she was ripped away.

My sweet Lillian

This blog was a place for me to vent out all those feelings I didn't know how to handle. At that time it was all about missing my sweet baby. But life goes on and other problems arise. And I have found myself wanting to add them to my blog.

I have also felt something that creeps up more and more often. I hate doing things for one baby and not the other. It is silly really, obviously I won't be able to do everything for Genevive that I do for Lillian throughout her life. But when I do get a chance I like to do things in double. I think it is the part of me that mourns having twins. All those visions and dreams of matching outfits, and double strollers. So much so that i am paying for a doll made of Genevive, and I am getting one of Lillian as well. it just didn't feel right. They are supposed to be a pair of sorts.

So here is my Lillian who you will be hearing more about. And Probably big brother Alex as well. I hope this doesn't affect any Angel moms who read my blog, but they are a huge part of my life and as a matter of fact my grief as well.

Here is Lillian when she was born. My 1lb 13 oz miracle. And to think she was the one we all worried about.


And here she is now.

Another sweet Angel...

I was hit by a ton of bricks today. I have been following baby Kayleigh for some time now. What an amazing fighter, she has come so far. Yesterday she took her last breath. It is so unfair, to come so far and have it ripped away. My heart goes to them, and I am crying as type.

http://kayleighannefreeman.blogspot.com/

Not around much this week.

Well, I am making a wedding cake this week, and it is taking all my time. I just wanted to let everyone know why I am not posting as much as usual. I am still thinking of Genevive, and it is nice to have a big distraction.

Here is an earlier video of Genevive, 4 days old on CPAP.

Happy birthday to me

Oh it's my birthday today! 28 years old, Boy all of a sudden I feel like an adult. I have been through a lot this year.

Who lives near the water?

I have a friend who has asked a favor in her blog:

http://2feetonearth1inthestars.wordpress.com/2009/04/28/i-help-from-all-you-bloggers-out-there/

Her angel Calypso has birthday coming up and she would like some photos of her name written in the sand. I did some this weekend, it is fun. I still need to do genevive's though, my camera died and I forgot batteries. But we have our week booked at the beach house for this year, so we have plenty of opportunities. Here is my favorite of Calypso's name. I loved that big rock so I decided to do it there, Rhode Island beaches are nice and rocky like that. I also love the wave breaking on the rock.

Grieving is necessary and wonderful

I had counseling today, YAY. And again I got the med push. She is unhappy I am not medicated for depression. I feel that depression for no good reason needs medication. Depression from the sudden devastating death of your infant is appropriate.

I feel like my grief and the things I do because of my grief is all I can do for genevive now. I want to feel it and think of her, even though it is painful. I choose not to medicate and cover it up. These things need to be worked through, that is the bottom line, I wish people would respect that. Who cares if I have a hard day and miss her and cry all day in bed. I deserve that every so often, I still take care of Lillian, I still do things that need to be done, I just allow myself a break.

Nothing huge going on today,

but I am posting cause I miss seeing Genevive on the front page. Let me go pick a good photo.

Here is a memory: This is the first time I ever saw her. I had already seen Lillian, and was worried because they were working on her for so long. She was having trouble breathing. She was so cute, and so tiny. She looked a lot like the first time I saw Alexander, same little nose and mouth. And a very similar expression.

April under the tree

A blog activity from here http://scarletriver26.blogspot.com/2009/04/under-tree-april_24.html

How long has it been since you lost your child/ren? Has your grief changed at all? Is your life becoming any easier or is it just harder as time passes?

It has been about 3 and a half months. My grief has changed since the first month or so, when I shied away and was still getting over the shock. Now I am just trying to cope. I believe my life has become harder. I don't think i really started to grieve until Lillian came home from the NICU.

How do you feel when you see pregnant women when you are out and about?


This does not bother me, nor does seeing women with twins. I am glad they are happy and I enjoy seeing happy things.

Whats your therapy in the aftermath of losing your child? Do you go to counseling? Do you do artwork or some kind of exercise or do you simply just let yourself be? What helps you?

SO far this blog, the loss of a child forum on justmommies, sometimes I feel a need to do something involving Genevive, and I allow myself time to do that. I am still finding my way.

I wish we could dance

I like dancing. I am a big woman so I only dance when no one is home. But the most fun I have is to put on good music and dance with Alex. It is kinda more like jumping on the bed in rhythm. But it is fun anyhow. Today we did that with Lillian. She was so fussy so we blasted some music and we all danced, it was a lot of fun, and she was much happier too. I wish Genevive were here at moments like that, Very unfair she is missing them all, and we are missing her.

Well I am working out of the slump

I planned a nice evening with Eddy last night. It was a good moral booster. We looked a bit at the internet (love the whole laptop in the bed thing), we watched robin hood men in tights. Then we stayed up till 2am just talking and snuggling. I really needed that. I never expected the 3 month mark to hit me so hard. I am already dreading 6 months and 1 year.

I did wake up this morning feeling terrible though, I have a bad sore throat, and post nasal drip. I am so worried about possibly getting Lillian sick, These small preemies can't handle sickness like a regular baby can.

I have accepted I won't be able to do anything for Genevive's grave for a couple weeks, we just don't have the money. Waiting isn't a good strong point for me when I am anxious, but I will deal. I decided today for a happy note I will post a photo of Lillian. She looks a lot like Genevive now that she has pudged up. But she has daintier features. This is my Baby B:

God does everything for a reason...

Someone online said..."I don't think there is a reason, I think god is just as sad as we are."

What a lovely sentiment, it sure makes me feel a lot better than the first one. What reason is there for a baby to die, you think of one.

A new genevive video for the front page. It is when she first woke up from her surgery. It makes me a bit angry, I had felt so relieved I thought she was going to be fine. But somehow this video matches how I am feeling today.

Could I be any more miserable

Yesterday was Easter, this is what the easter bunny left. See Genevive's angel and wreath so she knows we didn't forget her. Problem is everyone else did. She wasn't mentioned once, it was terrible for me. But what can I do? I made it through most of the day feeling great, then it hit me like a ton of bricks and I started tearing up and left. Luckily we only live in the back of the driveway, so Eddy stayed with the kids at the party and I went home.

Today has been no better, guess that is why I am still awake at 4:30 am. Tomorrow (technically today now) is the 3 month anniversary of my baby's death. I wonder how many people will remember that. I wonder if anyone else misses her. I wonder why it matters to me if people do?

Easter Eggs!

We colored Easter eggs today. I did a few for Genevive. I was angry that there was no purple. I tried making purple using the red and blue, but you know red easter egg dye rots. But here they are, I still think they are pretty. I was messing around in photoshop, not sure what I was going for here, except I wanted to see what some new vector brushes looked like. But Genevive isn't going to be critiquing my artwork, LOL. I will be taking photos soon of the tiles and stuff, just trying to find the time, this was a bad appointment week for Lillian. Seriously how many times a week does she need to be weighed.

Neonatal followup clinic

So Lillian had her first Neonatal followup. It is a specialty office that follows just the tiniest neonates, I think the ones born under 1250 grams. We specifically asked to see Dr. Stephens, she was also the Dr. who handled Genevive's sickness. Turns out she had us on her list to be seen by her anyhow, YAY she likes us! It was a very emotional appointment, she took such good care of Genevive and Lillian. After Genevive passed she gave us a lot of extra attention, she was very cautious with Lillian and made it a point to stop and check in with me a couple times a day. I really needed that at the time. I had a lovely conversation with the parent liason, we had a teary moment, she was pregnant with quads and two of them were stillborn. Her other two were 24 weekers, so she had a long NICU road. She was wonderful to talk to, and it was so nice to have a good conversation about Genevive. Tears and all I wish more people would talk to me about her. So any how in closing here is Dr. Stephens, this is just before she told me Genevive's heart had finally stopped. For anyone who may go through this in the future, that wait is the worst wait in the world. From when they disconnect everything till when she finally goes. More than once she made a gasp and I wanted to scream to put it back. It was horrible. They didn't warn me about that. For the most part she seemed peaceful though. Probably not what everyone wants to read, but I felt the need to say it.

Got more tile in today

I loved the tiles we got, but felt limited when I was brainstorming. SO I bought another 200 of a straight pretty green, 200 of a mixed dark purple, 200 of the original tiles we bought, and 200 of a mixed pastels that matches the pastels in our original tile, but with some extra colors. I am excited to sit down and start brainstorming some ideas of designs. It needs to be special. I also got in the letter stamps, They are perfect size, big size for her name and small size for everything else.

Helpful words

And a new video for the front page.

Holidays suck now

I just put together the cutest little color coded easter baskets. I tend to go overboard with holidays.... blue, green, pink, orange. I was having a blast then like in a flash the thought crosses my mind. There is no purple basket. And the tears start, and it ruins my entire night. I have this happen with any milestone, How long will this last!

I AM the mom of twins!!!!!!!!

I just found this while uploading some photos to my deviant art. The one and only time I ever held both of my babies. It is also the closest thing to a photo of the two of them together I have. I look terrible, but hey I just had twins and major surgery a week before. I was on cloud nine though. Lillian is on the left, and Genevive is on the right. See the size difference. I can't remember a happier moment the entire NICU stay. For this one brief time, everything felt right.

Sometimes it is hard to move, no?

I have been sitting in bed for two days, LOL. I showered and have gone to the bathroom a couple times. I fed the baby, but that is it. The whole weekend in bed, not finishing any projects. I have a pile next to me of purple and green scrapbooking things, and Genevive's memory box. I have been meaning all weekend to scrapbook her foot and handprints. The hospital only gave me an ugly white peice of scrap paper, it even has some old printing on it, it just won't do. But I am afraid, I can't get them back, what if I mess up, what if I don't do a good job. I have been dwelling on how to preserve these special things lately. If they somehow got ruined I would have nothing left. What a terrible thing, the only things I have of my baby can fit into a few small boxes. Sigh, this whole blog is a Woe is me blog, people are going to get depressed reading it.

Here is a new genevive video link, since the other one is being bumped off the page by this post. This is the very first video of her, Dec 30, the day after she and Lillian were born. Sorry she isn't doing much in it, She is still intubated.

Finally started the headstone planning

Since we can't afford a real headstone, I decided to make my own temporary headstone! I ordered the letter stamps and the mosaic tiles for it. I am so excited, the tiles are perfect, the exact color scheme that reminds me so much of her. Mixed purples and whites and leafy greens. They are beautiful. Once those all come in the mail, we can go pick up the mortar and make the headstone. We decided after a lot of thought that we would make it lay flat. I have visions of rowdy teenagers knocking over headstones and would hate for it to be my babies.

I am feeling very angry today

And poor eddy he deals with me! I am just having such a hard time, it is scary. I feel so helpless and angry, it is so unfair and nothing makes it better. Everyone else is dealing with it so well, why doesn't anyone else miss her like I do. Eddy seems fine most of the time. But here I am going on two weeks of barely functioning, not being able to get Genevive out of my head. I have this non stop need to do something for her, but having no money that is hard to do. Everything is on hold till we get paid. Eddy and I did work on her baby book a bit this morning, but it made me upset there is so much I can't fill in. Usually doing that stuff makes me feel better.

I also watched some of her videos, here is my favorite today:

How is Eddy handling it.

A conversation from today:

ME: "So a lot of people keep asking me how is Eddy handling it. I keep saying oh he is doing fine, he has his moments, sometimes he looks at photos with me ,etc. But I wanted to ask ya, How are you handling it."

EDDY: "I think about it, I have my moments. Sometimes I think there should be two instead of one. But it makes me feel better to know she is in a better place, and someday we will be there with her..... even your heathen soul."

LMAO, he said it jokingly. It is an old joke in our marriage, even thought he has a paper from a pope that somehow means I will go to heaven anyhow he believes. An athiest and a catholic we could be a sitcom!

In memory of my Genevive

I wanted to make a space for genevive, where I could put any of my thoughts and feelings. I wasn't quite happy with the memorial websites I had seen though. How perfect I found this, I can make it a nice place to celebrate her. I really feel I have reached a new stage in my grief. She is on my mind a lot lately, it is almost becoming to much. Helping to plan her headstone is helping though. I am sure I will post more about it later on. To begin with here is my story of what happened, written the day after she passed away. I don't think I could ever say it better than I did here in my raw grief.

Written the day after Genevive's death

Two weeks ago I welcomed my twin baby girls into the world. 3 months too early, but perfect in every way. We had a glorious two weeks, I spent 8 hours or more at the hospital each day, getting to know them, and watching them each develop thier own little personalities. Pumping breastmilk, doing skin to skin care, talking to and nurturing them to help them grow big and healthy. Dreaming of taking them home, and dressing them in matching outfits, taking beautiful photos, snuggling and rubbing noses.

14 Perfect days. Then on day 15 my worst nightmare came true. The hospital called at 2am and told me my Genevive was sick. She needed surgery right away and I needed to come in. Just hours ago I had held her and played with her, taken video of her, and left her peacefully sleeping in her isolette. When I got to the NICU they didn't even let me scrub in. They grabbed me to a room and 4 people told me my baby had a severe form of Necrotizing Enterocolitis, a disease that suddenly affects preemies, and that her intestines were dieing. I signed papers for her to be brought to surgery and asked to see my daughter.

My heart nearly broke in two. My baby was not able to breath and had to be intubated, all her veins were sticking out and she was sickly green, her little belly was three times its normal size. I was stunned a moment, and just watched her. Then I put my hand on her little head and talked to her. She looked at me, and I could see that little sparkle in her eyes, my baby girl was still there. She knew my voice and I could tell I was a comfort for her, I am so grateful for that moment. I stayed with her for 15 minutes while they prepared the transportation isolette. They had trouble keeping her stable, and were just telling me they didn't think she was going to be able to handle the transport, but my little fighter didn't take no for an answer. Her breathing improved and she was taken to hasbro for surgery. It took 2 and a half hours. The outcome was 75 percent of her intestines and bowel were removed, she had two stomas in her belly and would need colostomy bags but had barely enough bowel to survive. I felt instant relief, she was very swollen, but her color had gone back to pink. Eddy and I contacted a priest and had both Genevive and Lillian baptised. The hospital had the most beautiful little gowns for us, and it was a lovely ceremony. Then the priest said a special blessing over Genevive.

Women and Infants Nicu treated her wonderfully, and worked very hard all day and night for her. The team never left her bedside. She was hanging in there but not doing well. After 24 hours they decided they needed to do surgery again and figure out why she wasn't improving. They cleared out and sterilized the bay to do the surgery right there, because she wasn't strong enough to be moved. After the surgery the doctor and surgeon came in and told us the outcome. Half of her remaining bowel was already dead, the disease was progressing and she didn't have enough bowel left to survive. She wasn't recovering well from the surgery and they didn't feel she would make the next 24-48 hours. My heart stopped. Surely this must be a mistake, this is my baby, my big one, the healthy one, she was just a feeder and grower and was supposed to come home in a little more than a month.

They reserved the large family room for us, and my sister called in immediate family. We also called a photographer, photos is how I deal with both joy and sorrow in my life. I wanted beautiful photos of my daughters last moments. They put up screens to block us from view and moved over the other babies so we would have room. There was no more two people limit, They said the rules don't apply anymore, I can do whatever I want. Two hours I sat by her, Family arrived one by one and came to sit at her bedside. Talk to her and touch her, and let her know we love her. My mother hadn't arrived yet, but Genevive told us it was time. Her Blood pressure was dropping quickly, and we knew we had to move or we would lose her right there. The nurse and doctors disconnected all her machines one by one. I picked her up and we walked to the family room, the doctor helping her breath with the oxygen bag, and the nurse holding the pump with her pain medication. Once we got to the couch, they removed the bag and got rid of the tube blocking her beautiful face. Her lip was curled from having the tube there for so long, and she was very swollen from her surgeries, but I didn't care. She was my beautiful baby.

She had her last moments in my arms, surrounded by people who love her. Once the doctor said her heart had stopped we were able to remove the last wire, her pain medication. For the first time I could hold my baby wire free, I could move her wherever I wanted. It was both joyful and sorrowful at the same time. I spent about 6 hours with her, holding and loving her. I gave her her first and last bath, we did handprints and footprints in clay. Her curly fluffy hair got even more fluffy after it was washed, Oh I loved it. I could not stop touching her hair, I wanted everyone to feel it, it was the most magnificent softness, everyone needed to touch it and remember. During moments that I felt I could part with her for a second I let family hold her. Finally Eddy and I were as ready to say goodbye as we were going to be, we brought her back to her bed and left her for the last time.

The last thing I did was hold her sister, I needed to make sure I could still smile and feel joy for my other baby. It was like she knew we were hurting. She put on a nice show for us, smiling and pouting and doing kissy faces. She only reached two pounds the day before, this tiny thing that needs us so much. I am so frightened for her, and so greatful she is still with us. Pray for my Lillian, I couldn't bear to lose another baby.

I know people don't know what to say or do, what a horrible shock this is. What I need people to do is talk to me. Don't make me say my daughter is dead, I don't want to tell people, spread the news for me. But once you know talk to me, look at her photos, leave messages, remember how beautiful she was. I feel a great need for people to know she existed and was special. In only 16 days so few people got to see her in person and experience her wonder. She was so advanced, a newborn infant, only three pounds. But she was aware, and looked right at you, and smiled when you talked to her. If you do it a few times She would stick her tongue out at you to copy you. She always looked like she was smiling even when she wasn't, but when she really smiled it would make your heart melt. She never wanted to sleep, she was so busy always looking around, she didn't want to miss anything, but rarely ever cried. A perfectly happy baby. She had silvery hair covering her body, and on her head was soft curly hair like her daddy. It was brown but slowly turning blonde.

And don't forget Lillian is still here, I don't want genevive forgotten, but I don't want Lillian smothered with her memory either. Thier birthday will be to celebrate Lillian, we can celebrate Genevive on the anniversary of her death.
Genevive Mary Cooney
December 29, 2008 - January 14, 2009
3 lb 1 oz, 15 inches long