Remembering Genevive & Loving Lillian: A day of phone calls!

Thursday, September 17, 2009

A day of phone calls!

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

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

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

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

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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

Thursday, September 17, 2009

A day of phone calls!

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My favorite photo of Genevive

Written the day after Genevive's death

Getting ready to say goodbye