Remembering Genevive & Loving Lillian

kind of a sad day

2011-08-24T17:49:00.002-04:00

Today my wallet was so full of cards I couldn't zip it closed anymore. SO I had to clean it out. One of the things that went was Genevive's health insurance cards. I have been carrying them in my wallet for two and a half years after her death.

It is odd the little things that we hold onto. I admit I went back and forth until reason told me, why in the world am I still carrying them around. So they now live safely in her memory boxes with everything else.

And now I feel sad, like another doorway is closed between her and I. She is gone, it is not like the cards are going to change that, but sometimes I am angry life goes on. Maybe I should have just left them alone.

Time keeps marching by

2011-08-09T08:23:00.009-04:00

Thinking about Genevive today so I thought I would come post. Things are going great around here, the pregnancy is going well, but I still miss my baby. I think it could be the pregnancy, but I have been thinking about her a lot, and looking at her photos a lot. She was so awesome, It makes me angry that such terrible luck had to come by her. Lets go find some new photos to post, it's the 9th, so I will look for some 9 day old photos.

Day 9 was an awesome day. It was the only day I held both of my babies at the same time. It was also sibling day so Alexander came to see them as well. Genevive was sleepy most of the day.

Sucking her thumb during a diaper change.

All fresh and changed and back to sleep. I went back home for a while after this.

Can't leave this one out, though I have posted it before. Later in the evening.

Taking a rest with Mommy.
With big brother Alex.

Looking a little disappointed that we put her back in the isolette.
Big brother Alex checking her out, and singing ABCs to her.

somewhat neglected blog

2011-04-18T18:29:00.002-04:00

I haven't posted in over a month, that's terrible. I am thinking of Genevive of course, in fact a bit more lately. However, we have had quite a lot going on.....

We are overjoyed, but this does open a whole new set of emotions. The past month has been just holding my breath, waiting for a heartbeat, worrying about my diabetes, worrying about twins again.

Now so far my ultrasounds have only shown one baby, but with the girls the same thing happened until the 4th ultrasound, so I won't feel secure until the baby is a bit bigger. Even if it isn't twins, the risk of a premature birth is still large, both of my pregnancies were premature, and the reason the twins were delivered early was caused by my diabetes which I still have of course.

I think I won't feel secure until this baby is home, eating well, and past the age that NEC strikes. Even then, there is always something that can happen, I hate knowing that....

Genevive is in her own big girl bed!!

2011-03-03T07:03:00.007-05:00

OK, obviously that was fake. But where else will I ever be able to type that. Lily transitioned to a big girl bed today, it went so well. She loves her bed and slept in it with no issues whatsoever. I am very proud, but also a tiny bit melancholy. I get that way at a lot of big milestones with Lillian. I imagine it would have been much more challenging to transition twins out of the crib, but I wish I had the chance.

Let me go look for some photos to cheer myself up. Here is Genevive being silly with Daddy and her sister Teri. She was the most alert infant I have ever seen, she was making a bunch of cute faces this day.

I am missing Genevive today.

2011-01-22T16:56:00.004-05:00

So lets go find some photos!

OK, here are some I haven't shared before. When Genevive passed away, we spent the whole day with her, I think we gave her back around 9pm. But even with all that time, I felt like I wasn't ready. It nagged at me and nagged at me. Finally after working up the courage, a few days later I called the social worker and told her how I was feeling, and asked if I could go see her in the morgue. She said I could come in and see her, but she didn't think it was a good idea for me to go to the morgue.

So they found some clothes and brought her to the hospital meditation room for me. This little sneak visit really helped me find some peace. I am not sure what it was, I guess I needed to see that she was ok. And it was wonderful to see how she looked after her autopsy to prepare me for when I got her dressed at the funeral home. She was very cold, but she looked so much better than when we left her. I was so full of Joy when I saw that, I even contemplated having an open casket at the funeral.

Here she is shortly before she passed away.

And here she was a few days later. The clothes were a bit big, LOL.
And here is her lucky mother, happy to be able to steal a few more precious moments with my baby.

2 years without Genevive

2011-01-15T08:03:00.007-05:00

Well her anniversary has passed. I woke up pretty bummed.

I posted this on facebook (and got some lovely replies): 2 years ago today I lost a piece of my heart. It sounds like so long ago, but it feels like it was just yesterday. How do I go on when a piece of my heart is elsewhere for all eternity? Rest in peace my sweet baby, this world was never meant for one as beautiful as you.

I started writing the story of the 14th, which I will finish later on. My sister Pauline called me up and sang that "I just called to say I love you song". And she asked if I wanted to go to the store with her. I was going to make an excuse not to go, but she said I thought we could look for something for Genevive's shelf. Boy did that make me feel good.

SO I got dressed, we went out to a restaurant for lunch. We talked a lot about our childhood, and about the day Genevive passed away, and some of our NICU experience. And a lot about Genevive in general. Then we went to our favorite store and bought a bunch of stuff for the kids. But didn't find anything that really popped for Genevive. SO we went to get the kids from school, but found out my husband already picked them up, LMAO.

Then we decided to go back out, we returned to our favorite store (Savers btw) and they had new stuff out, and we found an awesome huge purple candle. So we got that for Genevive. and we got more stuff for the kids. And then we went to Shaw's to get stuff for my nieces bday party. She totally spoiled me, and kept me distracted, without forgetting Genevive. It was perfect and I am so grateful.

My other sister Mel didn't call, and I worried she forgot, but she posted this on facebook: Starting dinner then lighting a candle for Genevive and relive her through photos. Thinking of you all day, Jenny.

Let me see if I can find a photo I haven't posted yet. I tend to always post my favorite ones over and over. How about one from when she was 2 days old, since this is her 2nd anniversary. 2 days old, she was taken off the ventilator and I held her for the first time!

She was so content being held, but not to happy about being put back!
And she ended up under the bili lights as well. But she got her binky, she loved her binkies!OK, I couldn't pick just one!

January 13, 2009

2011-01-13T13:23:00.016-05:00

This is the day, 2 years ago, we got the phone call that Genevive was sick. 2 am in the morning, I know we rushed to the hospital, but I can't remember the ride, or getting ready to go. This is the day she had her first bowel resection surgery. It is also the day she was baptized. I have been running this day through my head over and over today.

The hospital called and I remember I assumed it was a problem with Lillian. I was surprised when they said Genevive was sick. They said she had blood in her stool and distention on her belly and a hole in her intestine, they just said I needed to come in right away to sign surgery papers.

When I got there, they stopped me from scrubbing in, they brought me to the small family room behind the desk. I remember a male nurse manager, he asked me if I had anyone ("a support system") I could call to come be with me, he said "the baby is really sick". I said there was no one, my husband had to stay with our son. They told me a bit about NEC, they said it was an inflammation of the intestine and usually presents near full feeds. They said at 5:30 her belly looked fine, at 9:30 it looked bad, at 11pm it was very bad and they called in a surgeon from hasbro to check on her. The surgeon said a large amount of bowel is involved and the 11pm x ray showed a large amount of air, she said there is a good chance of a stoma needed. They had me sign the papers for the exploratory laparotomy, bowel resection if necessary, and also to put in a Central line (Large IV that threaded into one of the large veins that lie close to the heart, it has several ports). When all the signing was done I asked if I could go see her now, I scrubbed in and went over to A-bay.

In A-bay I was heading past Lillian's isolette to Genevive's which is on the other side, but the nurse stopped me and pointed to a warmer on the right side of Lillian in the corner. I walked right past her because I didn't recognize her, she looked so sick, I had thought it was another baby. She was green, and her belly was really swollen, and she was intubated. I remember I walked up to the warmer and saw her and gasped and cried right off the bat, it just took me by surprise. I gained my composure back and walked over and talked to her a bit, she opened her eyes and looked right at me. I remember that moment brought me peace, it made me feel like she was her alert little self still. I felt my voice was comforting to her, and that she knew it was me. I was nervous to touch her, but I did rest my hand on her head, something I did a lot in the NICU with them both. A surgeon from hasbro came and talked to me a little bit, I don't remember a lot of that conversation, I was focused on Genevive. But I know it was basically we don't know what will happen until we get in there and see what is going on.

Then the transport team came to get her ready for her surgery. The transport unit is an isolette on wheels, it has everything attached to it. They put her in it, and moved her oxygen and pulse ox and blood pressure cuff to the machinery in the transport unit. But she didn't like being moved. Her sats dropped, and she struggled a bit. They watched for a minute to see what she would do, then they bagged her and manually pumped 100 percent oxygen for a few minutes. Right when someone mentioned to me that she might not be well enough to transport, she stabilized.
They asked me if I wanted to wait in the NICU. They thought it would be better to sit with Lillian and wait. I declined and said I would rather go with Genevive. The surgery was being done in Hasbro Children's Hospital next door, so it meant going through the basement maze over to the next hospital. They warned me they had to go fast with the transport unit. They were not kidding, We ran through the basement halls, it was a long run, I was getting worried I couldn't keep up. Finally we reached a point where they had to bring her into the surgery room, and someone else walked me to a waiting area. It looked like a recovery room for patients after surgery, lots of curtains with beds in between, but empty. I sat in a chair and waited for what seemed like forever. Later on I know it was 2 and a half hours. Finally the surgeon came out and told me that the surgery went well. That it was a severe case of NEC and he had to remove 75 percent of her bowel both small and large intestines, but that she had enough left to survive if the NEC doesn't progress. He said her recovery would be a long road but she is more stable than she was, She had a central line put in and two stomas. First they needed to get her stable after surgery, then see if she can feed and if the bowel she has left is enough or functional. They said someone from surgery would talk to me in more detail later, and then someone escorted me back to the NICU. I was disappointed I couldn't stay with Genevive, but she was in recovery. I spent some time with Lillian and waited for her to come back about an hour later.When I finally saw her, I was so relieved. She looked so much better! She was not that sickly green color anymore, and she was a tiny bit swollen from the surgery, but not the same as the swelling from the NEC. The team kept a very close eye on her. And she also had a nurse assigned to her alone, this nurse was Pat. She was wonderful, she knew exactly what she was doing, and she put up with me. She answered my questions, and was very supportive. After Genevive's death I asked her to be Lillian's primary nurse, and I am not sure I could have made it through the rest of my NICU journey without her. When she changed the bandages, she showed me the incision and stoma's, really they didn't look bad at all. I expected much worse. The surgeon came and spoke with me a bit more about the surgery during the day. We talked at length about what NEC is and what could have caused it. She said it was "NEC on the worst end of the spectrum, a severe case but not catastrophic". She said Genevive had 50 cm of small intestine left. 5 to 6 cm of the remaining bowel was diseased but not dead, and they would keep and eye on it and felt it could heal. She explained that 40 cm is the bare minimum to work with, that without a colon the body can't absorb nutrition properly and eventually there would be liver failure. You can't survive without a bowel. She said they took care of what they needed to, but that doesn't mean the NEC is cured. We have to wait and see of the disease continues. About half of these babies go on to lose more bowel. The next 48 hours are critical. My job is to talk to the baby and be with her. And the single most important thing I can do is to keep pumping. That if she recovers they want breastmilk for her.

The morning was mostly uneventful. The team did a lot of tweaking settings and things. I sat in the big blue comfy chair they had brought me in the middle of the night, getting up when something seemed to be happening to be nosy, and watching her sleep. Around noonish she finally woke up from the sedation. But she had been through a lot, I talked to her for a couple minutes and then she closed her eyes, and went back to sleep.
The second half of the day she just seemed to get progressively worse. Her blood pressure kept dropping a lot, and they were pumping a lot of fluids into her. She got blood transfusions, and plasma. Pat told me that they had to give her fluids to keep her blood pressure up, but the extra fluid would move out of her blood and into her other cells, so even though she is swollen she still needs more fluid. She told me that Genevive would continue to get more swollen. I also at one point asked if I could see the X-rays from the night before. And someone showed me all of Genevive's X-rays and I took photos of them. It was sobering to see the before and after X-rays.

At around 7pm she started having issues oxygenating herself. They did an X-ray to make sure the vent didn't get out of place. I remember at this point I was asking a lot of what if questions. and Pat asked me "you know this is very bad right?". I said I know, I am just trying to stay positive. But it made me think and I spoke with Eddy and we decided to have her baptized just in case. At around 10 pm the catholic priest from Hasbro came over and baptized both babies. The nurses brought out the most beautiful baptism gowns from threads of love, with little bonnets and little blankets. Genevive's was 3-6 lb and trimmed with purple, and Lillian's was 1-3 lb size and trimmed with pinks. Genevive wasn't really able to be moved, so we put the gown over her, and made it look good, then I used the blanket to cover most of her wires.

Then after the baptism Daddy and the Priest went over to Genevive and did an extra blessing for her. The priest said "because she really needs it right now". I was still holding Lillian.

Once that was done I stayed at the hospital a while longer, but hadn't slept in two days. So the Neonatologist that was on the night shift had a conversation with us. She first talked a bit about "heroic measures" to save genevive's life if things went south, and asked us how we felt about that. We said we felt whatever was needed to save her we should do it. Then she assured us that Genevive would be ok, and that we really should go get some sleep. I told her I was worried about leaving because Genevive got sick and no one called us until hours later. She assured she would call for any tiny change. So we went home to get some sleep. She did call once to say that Genevive was still having trouble oxygenating and they decided to switch her to a jet ventilator, she said it is gentle on her lungs but gives more respiratory support. And she was still having trouble maintaining her blood pressure and they gave her some new medication to try to help that. I slept for a total of maybe 3 hours. Finally I couldn't take it any more and we showered and headed back to the hospital.

A new photo of my sweet pea!

2011-01-12T15:41:00.002-05:00

Hehe, I found it while working on her slideshow. It was in a folder labeled "mels photos". My sister took it the day after she was born, taking a sneak peek with Eddy. I still hadn't been able to get down to the NICU to see them yet.

This photo makes me happy, she is so beautiful.

2 days until Genevive's anniversary. I have been quiet because I am a bit depressed. I also don't post much when I am at peace, LOL. SO I guess you guys only hear from me when I am feeling grief but not so bad I am sleepy and avoiding everyone.

My babies together!

2010-12-31T19:19:00.007-05:00

So, I started working on my baby videos. I have put it off so long, Because I take so many photos it is overwhelming.

I am doing genevive first, since it seems to be a comforting activity while I am missing her (this is my tough period, the time she was actually alive). Plus of the two it is a much smaller job obviously. Anyhow while sorting out the photos look what I found!

Look that is a photo of both of my babies together! It is in the delivery room, inside the transportation unit, ready to go to the NICU. Lillian is in the back, and Genevive is closest to us. I do have a photo of me holding both of them, but this is the only photo of them actually together. Not the greatest photo, but something I was sad I didn't have. There is something about seeing them together at the same time, it makes it feel more real.

Here are a couple other favorites of Genevive on her birthday! She was such a cutie, she looked like my Alex when he was born.

Her very first photo ever! Fresh out of the belly.
Getting cleaned up a bit.

And finally a cry! I remember it was a husky gurgly cry, she was struggling to breath a lot more than Lillian. In fact a nurse held Lillian next to the operating table to see me for about ten minutes, because they were still trying to stabilize Genevive. When she was good enough, they brought her by me for just a second and then whisked them both to the NICU.

And finally here is my first look at my baby! And her first look at me, cause she opened her eyes!! After seeing Lillian, she seemed so big! But she was only 3lb 1oz.

My boy Alex

2010-12-29T08:37:00.006-05:00

My son is 8 years old, he is also autistic. Sometimes he comes out with things that just amazes me.

This morning He came out and said "Good morning mom, today is Lillian and Genevive's birthday! But Genevive is really dead, but that's ok we can sing happy birthday to her anyway." "If she didn't die she would have lots of fun and play with Lillian's toys, and they would share. But she was sick and died, that was very upsetting"

Now he does bring her up every so often, not a lot, but every couple months he will engage a conversation about it. It definitely affected him, and he is more aware of it than we first thought. I try not to make a big deal about it around the kids, so that Lillian won't feel weighed down by her sisters death. Most of my candle lighting and things I do late at night, it seems like late at night is when I miss her most anyhow. I can't think of a time I have mentioned Genevive's birthday around him. But he remembered, I am so touched.

It is very clear, Alex misses her too. He was very excited when I was pregnant, He would tell anyone who would listen that there is TWO babies. And when they were born he would beg to visit the NICU. And while we were there he would run back and forth between the two isolettes, it was so cute! He was very upset that he couldn't hold them because of the wires.

When Genevive got sick, we made the decision to let the kids visit her before she passed away. Especially with Alex's communication problems, we felt that he needed to see what was going on to really understand. We didn't sugar coat or hide what happened. he needed to understand there was not going to be two babies anymore. He knows Genevive was sick. he knows she died and when she died she stopped moving. And he knows we buried her.

So when my brother brought him we were all in the family room, and he came up and gave Genevive a kiss. It didn't bother him at all that she was swollen and bruised. When I got overwhelmed I asked them to take Alex out of the room, but he came back in a little later after she passed away. I explained what happened and we removed all her wires and he said "can I hold my baby YET!". I sure didn't expect that, but what can I say, so I gave her to him. And he kissed her and talked to her and rubbed her hair, it was very sweet. I have to say that his presence actually helped me a bit. I was unsure at the time, but now I feel that involving him was the best thing, I think he has a good handle on death, and what happened, and he got his chance to get the same closure we needed to say goodbye.

Happy Birthday Genevive, I remembered you, and Alex did too!

Happy Birthday Genevive

2010-12-28T15:17:00.003-05:00

Yeah, I sprawled "Happy Birthday Genevive" on my bathtub wall with Lily's bath crayons. Seemed better than lighting a candle, I am sick of lighting candles.

Tomorrow is Lily and Genevive's second birthday. Can't believe it has been two years already. What a journey.

I am back in my misery and guilt. I can't feel happy, and I feel bad because I think I should be for Lillian. Instead I am such a mix of emotions I feel like a lunatic. Yesterday I told a newly grieving mother, "It gets better, I promise". And it does, it's better this year than it was last year...... but it still isn't easy.

Tomorrow should be a day of twos! Two little girls, turning two! Two little fancy dresses and two little cakes with two little candles each. But half of those twos are missing, and it is just very unfair.

I need to get my act together, Poor Lily can't have a lunatic for a mother on each birthday.

Chatted about genevive today.

2010-11-23T15:27:00.003-05:00

Today I had two doctors appts with an hour and a half wait in between them. I ended up chatting with a woman in the waiting room for a while. I was filling birthdays into my new 2011 planner book and she asked about my book. Every year I get a new photo planner. This is what 2011 looks like:
All my kids are getting huge aren't they! She instantly asked about Genevive up at the top. SO I explained a teeny bit about what happened. And she asked a few questions, it was nice because she didn't come across awkward at all. It was a treat for me, I have been feeling melancholy lately. This time of year sucks, the holidays, the twin's birthday, Genevive's anniversary, it feels like I am going to explode sometimes. But I am still trucking, Just thinking about what I want to do for Genevive this year.

RIP Kaiya Rae

2010-11-18T18:42:00.003-05:00

Shock and awe has knocked me off my feet over the news of Kaiya Rae's death. On her 5 month birthday she passed away suddenly, with no good explanation. I saw her mom post just once in the cloth daipering forum and remember thinking how gorgeous Kaiya was in her siggy.

Whenever I hear of a new Angel it always affects me deeply. In a small way I relive what I went through with my Genevive, and I feel pain for the new grieving parents. It is such an unfair thing.

But every once in a while there is one that really hits home. Reading this mother's posts it is so obvious that she was totally and completely in love with her baby and enjoying motherhood every step of the way. It is so very very unfair that this baby would have to pass, no sickness, no accident, no reason, and no comfort.

And I feel useless, just some stranger across the country reading posts on the internet. I donated the last money I had in my bank account, a whopping $6.50. I feel a bit silly, but at least I tried doing something. I left a message on her facebook as well, and that is all I can do.

I know when Genevive passed away I was moved by the outpouring of support from my online friends. I hope maybe it is bringing some comfort to Kaiya's mom and dad too. I will never forget sweet baby Kaiya.

Diggin my way out of this hole.

2010-10-07T19:57:00.003-04:00

Man, back in a slump! I feel like I am always going up and down, up and down. Now that the headstone is done I am feeling a bit empty. For so long I was working hard on the pamphlet, working hard on getting the headstone. And now all of a sudden it is all accomplished and I have nothing to DO for Genevive. I have to do something, I can't just do nothing, I have tried and I am miserable.

I spoke with our NICU social worker about this just that the other day. She has been a wonderful support during our grief journey. She suggested maybe I could make a little thing to give to parents about making memories. So they have some ideas to go by. That was my original idea when I started my pamphlet, so I do think its a wonderful idea. I have started putting a lot of thought into the best way to approach it.

I also have had a lot of fun sewing lately. I made cloth diapers for Lillian. And I started making some little Preemie size clothes to donate to the NICU this December. This project also has made me feel a bit better.

Oh and I never posted my new tattoo here. It makes me so happy. When I feel like I need to I can look down and see Genevive's actual foot, actual life size. I wish I had done it sooner. It is on the inside of my arm a little below my elbow. My husband has one to match on his upper arm, but no heart, just the foot in the wings so it is more manly, LOL.

sadness

2010-09-09T19:21:00.003-04:00

Every night I spend a little time with Lillian before daddy sings to her and puts her to bed. Today we put on her nightgown. Practiced some words, up, down, eye, mouth, and tattoo, LOL. She loves my tattoos, and likes to rub them. And we did some tickles and raspberries and in general were very goofy. It was bliss, she is such a lovely baby. But in the end I always end up feeling a little sad, and thinking about never playing with Genevive. It makes me feel like I just can't be fully happy , and I wonder if it affects Lillian somehow.

Headstone is installed!

2010-08-30T20:00:00.013-04:00

I need to buy more chipped marble though, I was surprised to see that a lot of it was missing, and in general her grave was a grown over mess. Sad, since I had it so pretty last time. The temporary headstone I made last year was broken into 5 pieces, that was a bit sad, I had hoped it would be ok so I could bring it home. Here are some photos. I will take better ones Wednesday or Thursday when I get over there to put down more chipped marble.

So first we had to find the temporary stone, that is how overgrown it was. We dug out the pieces and moved as much of the chipped marble as we could out of the way.

Then Eddy and my brother Bill dug out a hole for the stone.

Here is the new stone, Isn't it just lovely! I truly adore it. It is really heavy, I can't even lift it a tiny bit. It is a lot bigger than I expected, the photo doesn't really show how big it is. It is a lot bigger than she was in real life, LOL.
They had to put it in and take it out a couple times to fix the size of the hole.
Big gap in photos here, because I was sitting on the ground fixing the rocks and dirt as best as I could.
My mom bought the little flower holders and the flowers. Purple for Genevive!

So here it is! I am upset we had to leave it looking this way, but I really hadn't expected so much of the marble to be gone. It will look so pretty when I redecorate it this week though.

Here is my headstone crew.... My step dad Dennis, my mom Robin, my niece Olivia, My brother in law Chris holding Lily, My sister Mel, my husband Eddy, me and my brother Billy. Alex refused to get in the photo, so we had him take the picture. Wish we had moved that stroller, LOL. I appreciate the support, and I am glad some family was there. It is nice to know that they think of Genevive. And Kudos to everyone it was so hot, and there is no shade at the grave and no wind at all, on the way home the bank thermometer said 101 degrees.

Now that it is done, I feel a mix of emotions. I am glad it is done, I was worried having the headstone in my van for a couple months, I Didn't want anything to happen to it. However I also feel sad, this was my last big thing. Now there is nothing left I can do for Genevive. I feel like I am done parenting her. Seems odd to even think of parenting a dead baby, but I still feel like she is mine and I am supposed to provide for her. But now I am done providing for her, so what am I left with? I can light a candle a couple times a year, but it just doesn't feel like enough for me. I guess I will have to find a new way to continue my grief.

Mini rant about heaven

2010-08-29T09:14:00.002-04:00

Now I will say upfront I am an athiest. I don't believe in god, heaven, hell, ghosts, spirits, angels etc. I just can't wrap my mind around something I can't see I guess. I have no idea what happens when you die, and no idea what happened to my daughter. To me she is just gone, and should be remembered.

In grief this is a tough spot to be in, It seems everyone turns to their particular religious beliefs for comfort. I don't have that. When my daughter died I got a lot of religous types of comments, offers of prayers, people saying I will see her again someday. They never bothered me since it was people's kind thoughts that mattered. Though they don't offer me much comfort either, I don't believe I will see Genevive again someday. If it turns out I am wrong, that would be lovely. That is kind of how I see it, When I die I will figure out what happens, maybe I will go to heaven, maybe I will become a spirit, maybe I will just cease to be and that doesn't sound to bad either.

On the other hand though, I refer to my daughter as an angel, it's a lovely representation. And my husband is catholic so I respect his belief that Genevive is in heaven.

One thing that really makes me angry though is when people represent my daughter running around in heaven, eating cake and chatting with other angels and what not. To me she is my baby, forever 16 days old, forever sleeping and drinking milk. If there is a heaven why would she be older? The whole idea of her talking and walking just really sends chills down my spine. I can't see her any other way than the little baby I cuddled. I don't know if this is a stupid thing to harp on about, but it really does bug me a lot.

The one other thing that really does make me so angry is when people say she belongs with the lord. The lord took her back to him etc. She belongs to me, and my arms is the best place for my babies, no one will ever convince me otherwise.

So anyhow I just wanted to reflect on that a bit. I on no way have an issue with religious people, I respect all religions and peoples right to worship how they choose. And I enjoy when people offer me prayers, I think it is a kind thing to do. But if my daughter is an angel, she is a baby one, sleeping in a nice cushy bassinet.

Twin sorrow.

2010-08-25T00:12:00.004-04:00

I spent some time today in the multiples forum I frequented while pregnant. It was neat to see the babies who are toddlers now and read up on everyone. But it made me feel very sad.

I should have two babies, and be posting cute photos, and giving out awesome advice on how to handle twins. I am angry at how many of the moms there complain about how hard it is to have twins. I think its way harder not to, but I guess I am glad they don't realize that.

I am a mom of twins too.

On another note, it has been a while since I have stayed up all teary eyed missing Genevive. I miss her every day of course, but then sometimes it is just so painful its all consuming. But that is happening less lately. Maybe I am moving forward in my life, but I sure feel guilty about that. She isn't on my mind 24 hours a day anymore, I feel like that isn't right. I am not sure how grief is supposed to go later on. I am worried I might start forgetting things. eh, I am rambling.

2010-07-27T08:28:00.002-04:00

I am in such a slump. I have hardly done anything in weeks. Online or offline. I am still here, just don't have much to say. I miss Genevive, and I feel very discontent lately. I can't even find a good picture for this post. Blah

Important tips for medical personnel in dealing with grieving parents

2010-05-13T11:37:00.003-04:00

Not the most creative name is it? But it gets the point across. Here is the pamphlet I made for my hospital presentation. This project has brought me great peace in Genevive's death. I guess I feel like it isn't all for nothing. I got awesome responses from hospital personnel. And I have to say personally I am very proud of it!! Here is a PDF file for anyone who wants to See my pamphlet.

Important tips for medical personnel in dealing with grieving parents

Of course feel free to save, print, share whatever you want with it. It is my hope that this will be distributed to hospitals that deal with early infant death.

I plan to make a website to publish it on soon. And eventually get some nice copies of it printed to mail out to some more hospitals. Local hospitals in my area already have copies of it.

And Please I am always looking for feedback and suggestions.

Women and Infants

2010-05-10T08:00:00.003-04:00

I love my hospital, I had my son there and of course I had my twins there. I watched them nurse Lillian to health and of course I lost Genevive there.

I never realized what an amazing place Women and infants was until that happened. They were wonderful at coaching us when Genevive passed away. And amazing at putting up with us the rest of Lillian's NICU stay. Because I sure was a paranoid difficult Mom. I am not sure what happened, we lost her and a switch in my head flicked. Now I knew a baby could die and my entire approach was different in the NICU. I wanted to be hands on, I wanted to take every opportunity I could to do anything and everything, because you never know. In an instant Lily could have died too.

I felt the hospital was very accommodating to this need. And also went out of their way in other aspects too. The heading doctor on the team came and talked to me every morning when I came in, just to let me know Lily was doing fantastic. We only ever saw them before when there was a big issue. We still see her to this day at the followup clinic. I also got a lot more reassurance from the nurse practitioners as well. Lillian's primary nurse just seemed to understand me, we fit together very well. She let me be hands on and walked me through stuff, instead of just doing it herself, which certainly would have been faster. Anyhow I am rambling.

The point of this post is I am excited I go to volunteer services today!! Now I already did a presentation at the hospital. I spoke about our experience and presented my pamphlet. That got such an awesome response. I was invited to be on a new committee that was forming on palliative (end of life) care in the NICU. I really enjoy being on the committee, it is my way of healing from Genevive's death. Through my experience I can help other parents who find themselves in our situation.

We are also planning to have me do my presentation again sometime in the fall, but 6 times in a couple weeks period at different break times so that more hospital personnel can come. And I guess for this kind of presentation they get some sort of credit for going.

And we decided that since I am in and out a lot, and likely to do more. I need to go have my tb testing done and stuff like that and get a badge, woo! So when I walk in security won't look at me sideways.

Hey tomorrow I will post my pamphlet in case anyone here is interesting in reading it. Or even sending a copy to their local hospital *wink*

Isn't it funny

2010-05-08T20:44:00.004-04:00

I always feel like I read all these clever bloggers and I am not clever at all. Everytime I want to say something important and make it sound important and poetic, I sit here staring at the screen like an idiot.
Anyways, I just wanted to say Happy mothers day to all the Angel moms out there. Some of you have other kids, some of you don't. But you are all mothers to the most special babies.

Feeling a little guilty.

2010-05-06T13:20:00.003-04:00

I read a lot of other angel moms blogs. And belong to a couple of forums. And a lot of comments are made about visiting the cemetery. And a lot of photos are posted of the cemetery. I rarely visit Genevive's grave. I usually do on big milestones, like 6 months, 1 year, and christmas I did. And I did a couple days after she passed away. But I never leave the cemetery feeling peaceful, It never feels like it helps me.

When we went on the 6 month anniversary we redecorated the whole thing. I did find that to be helpful, and enjoyed myself. I do know a lot of it is was that I am very bothered by the headstone. But now we have one and it will be installed soon, I hope that helps me a bit.

In the back of my head though I wonder if that makes me a bad mom. Or I wonder of other people will think I don't care about her because I don't visit her every week. The thing is I feel closer to her by holding her little blood stained gown or rubbing her little hand imprint than I do looking at the mound of dirt.

P.S. That is a photo of Genevive's casket I took from the car window as we were leaving. I just really felt it was a beautiful sight. Her casket was just so lovely with the little cherubs on it. And the snow and the flowers all made it look so quiet and peaceful and represented how pure and innocent she was so well.

Boy it's been a while

2010-04-28T15:34:00.002-04:00

Feels like an eternity. We moved to a new house!! But my computer also broke, and between moving and everything else, it took me a good long time to get it fixed. But it is fixed now, and I can stop stealing my husbands. I am so happy to be back in action.

I have had a lot of thoughts I wish I could have typed about in this blog. But they come and go. The move went well, I was both sad and happy to leave behind the nursery we painted for the twins. We worked so hard on it, and it was a lovely happy room. But I was avoiding going in there as much as I could, because it made me think of days when I was planning for two babies.

I also noticed in the chaos of moving the 14th of March had slipped right by. It was the 17th before I noticed. It was odd not dwelling on Genevive's death on the 14th like I do every month. A relief as well, though I sure did notice on April 14th. It's not that I didn't think of her, it just wasn't any more than I do every other normal day.

Her stuff is now in the new house on the top of the shelf I keep my photos on. It makes me happy there, I think its a pretty setup. I will take a photo of it when I get a chance.

What an awesome poem. It says exactly how I feel.

2010-02-26T22:52:00.001-05:00

A Mother's Grief

You ask me how I'm feeling,
but do you really want to know?

The moment I try telling you
You say you have to go

How can I tell you,
what it's been like for me

I am haunted, I am broken
By things that you don't see

You ask me how I'm holding up,
but do you really care?

The second I try to speak my heart,
You start squirming in your chair.

Because I am so lonely,
you see, no one comes around,

I'll take the words I want to say
And quietly choke them down.

Everyone avoids me now,
Because they don't know what to say

They tell me I'll be there for you,
then turn and walk away.

Call me if you need me,
that's what everybody said,

But how can I call you and scream into the phone,
My God, my child is dead?

No one will let me
say the words I need to say

Why does a mothers grief
scare everyone away?

I am tired of pretending
as my heart pounds in my chest,

I say things to make you comfortable,
but my soul finds no rest.

How can I tell you things
that are too sad to be told,

of the helplessness of holding a child
who in your arms grows cold?

Maybe you can tell me,
How should one behave,

who's had to follow their child's casket,
watched it perched above a grave?

You cannot imagine
what it was like for me that day

to place a final kiss upon that box,
and have to turn and walk away.

If you really love me,
and I believe you do,

if you really want to help me,
here is what I need from you.

Sit down beside me,
reach out and take my hand,

Say "My friend, I've come to listen,
I want to understand."

Just hold my hand and listen
that's all you need to do,

And if by chance I shed a tear,
it's alright if you do too.

By: Kelly Cummings

FINALLY

2010-02-22T09:04:00.002-05:00

Well, things have been difficult lately. My uncle Steve passed away last week. He died of cancer, and I was there for the last 4 days, it was very tough to watch. Very different from Genevive's death experience. In a way I think the death of a baby is better, even though that sounds funny. When she passed away we were able to do her bath, take photos, do hand prints and casts. Lots of little things like that. With my uncle all we could do was watch and when he was gone hold his hand and rub his head. I am not sure why, I felt there should be more that can be done, but there wasn't. I am just rambling, I am so upset. I love my uncle, and I am so sad to see how much my dad is suffering.

On a different note we finally got the email about the headstone. It is done and ready to be shipped. Isn't it breathtaking!!

Taking a moment to post

2010-01-26T08:58:00.003-05:00

I have been so preoccupied lately with Lillian. She is having some severe allergy issues and we are working with the allergist and GI to figure out what my poor baby can eat.

I have been thinking about Genevive though. I wonder if she would have had allergies too? I don't think so, she was a good eater and she loved to eat. Lily struggled with eating from day 1 in the NICU. At one point I was worried because genevive was eating the breastmilk just as fast as I could pump it, and I was afraid there would be none for Lillian when she started feeds.

In the grieving world I made a huge accomplishment recently. Since a few months after genevive's death I had the idea to make a pamphlet for parents losing a baby. I felt so lost that day, I knew I wanted to do stuff, but had no idea what to do. I have been jotting down notes and brainstorms and ideas as they come to me. Well I was asked to speak at the hospital about our loss. What helped what didn't, things like that. So I took all my notes and made a pamphlet for the nurses and doctors on how to help guide us through that day. It went awesome. The hospital media center printed and cut and stapled it for me. The meeting was fantastic, people asked a lot of questions, and I got an awesome response about the pamphlet. SO I will be refining it a bit, and distributing copies to other hospitals. It is very satisfying to me, that Genevive's death can help other people. Then at least I know some good came out of it.

One year ago at this time...

2010-01-14T00:28:00.001-05:00

One year ago today I watched my daughter die in my arms. I couldn't fix it, I couldn't save her. I have struggled along for a year. I have watched Lillian grow and felt the pangs of something that is missing. I have gone through milestones and holidays, I survived her birthday. But this pain and sadness enveloped me more and more as this day approached. I work hard to make sure she isn't forgotten, and to help others who are going through the pain of losing a child. But now this day has come, how can I help me myself. I am angry, it is unfair, why my baby? I am sure I will make it through somehow, I have no choice after all. I will hold onto the fact that I am lucky. How lucky I had such a special spunky, active little preemie. And how grateful I am that she is no longer in pain.

I wonder if she means anything to other people. I wonder if her story has made any difference whatsoever, or if my fear of her being forgotten has just turned me into a crackpot.

Perhaps for today everyone can pretend I haven't turned into a lunatic. Say my daughters name, don't ask me to get over it, don't tell me to look at Lillian, don't tell me she is in a better place. I would love to hear a memory, or that she was cute, be outraged with me, I don't know. I miss her, I feel it, and today I am unable to pretend that everything is ok.

A new year

2010-01-06T23:13:00.000-05:00

Everyone seems to have a profound post about the new year. Lots of nice resolutions and well wishing. I have none, I am glad 2009 is over, and There is now way this year could possibly be as bad. I think other new angel moms can say it with me, Thank god this year is behind us. Now how do we handle the next? Now I can't say I lost my daughter this year, it makes it sound so less important. I don't like that.

I lost my daughter last year......

Happy Birthday Genevive

2009-12-29T11:31:00.000-05:00

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

2009-12-25T12:12:00.001-05:00

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

2009-12-24T14:57:00.000-05:00

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.

2009-12-20T15:51:00.001-05:00

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

2009-12-16T15:29:00.000-05:00

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

2009-12-14T19:31:00.000-05:00

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"

2009-12-07T23:34:00.000-05:00

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..

2009-11-12T11:39:00.000-05:00

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

2009-11-09T04:40:00.000-05:00

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.

2009-10-29T15:35:00.001-04:00

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?

2009-10-27T04:08:00.000-04:00

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

2009-10-14T11:45:00.000-04:00

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

2009-10-06T22:43:00.000-04:00

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

2009-09-24T09:45:00.000-04:00

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

The news story

2009-09-19T00:08:00.000-04:00

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!

2009-09-17T11:44:00.000-04:00

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

2009-09-16T20:58:00.000-04:00

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!

2009-09-15T14:37:00.000-04:00

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

2009-09-14T07:55:00.000-04:00

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.

2009-09-09T08:32:00.000-04:00

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.

2009-08-25T12:24:00.000-04:00

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...

2009-07-20T14:38:00.000-04:00

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!

2009-07-04T00:04:00.000-04:00

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

2009-06-28T17:08:00.000-04:00

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

2009-06-25T13:21:00.000-04:00

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

2009-06-19T12:02:00.000-04:00

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

2009-06-18T17:38:00.000-04:00

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

2009-06-11T15:34:00.000-04:00

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

2009-05-28T16:46:00.001-04:00

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!!

2009-05-23T22:27:00.000-04:00

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

2009-05-17T12:16:00.000-04:00

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

2009-05-15T11:25:00.000-04:00

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....

2009-05-14T08:09:00.000-04:00

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

2009-05-12T11:01:00.000-04:00

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...

2009-05-12T09:46:00.000-04:00

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.

2009-05-06T09:49:00.000-04:00

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

2009-04-29T09:16:00.000-04:00

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?

2009-04-28T18:24:00.000-04:00

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

2009-04-27T15:53:00.000-04:00

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,

2009-04-25T21:30:00.001-04:00

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

2009-04-25T00:45:00.000-04:00

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

2009-04-22T18:53:00.000-04:00

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

2009-04-16T13:51:00.000-04:00

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...

2009-04-14T20:22:00.001-04:00

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

2009-04-14T04:18:00.000-04:00

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!

2009-04-10T17:05:00.000-04:00

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

2009-04-07T15:54:00.000-04:00

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

2009-04-03T19:19:00.000-04:00

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

2009-04-02T11:09:00.001-04:00

And a new video for the front page.

Holidays suck now

2009-04-02T02:41:00.000-04:00

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!!!!!!!!

2009-03-30T21:40:00.001-04:00

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?

2009-03-29T19:05:00.001-04:00

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

2009-03-27T12:00:00.000-04:00

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

2009-03-25T16:21:00.000-04:00

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.

2009-03-23T18:20:00.000-04:00

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

2009-03-23T06:36:00.003-04:00

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

Hey I have a blog!

2009-03-22T09:26:00.000-04:00

So I posted a message under someone's blog today and saw that I had a profile. so I checked out my profile and it said I have a blog. So I checked out my blog and it says Delekatala's Photography. WOW, must be some unfinished old project, september 2007 it says. Perhaps I will think of something to do with it later on tonight.