This is a copy of the post on a forum that I frequent. Chelsea gave birth to her daughter 1 week before my own son was born. Her daughter Ali was born premature. Ali has been fighting for her life since birth & has undergone numerous surgeries. Sadly, Ali didn't make it.
"I want to first post a warning that some things I may write could be desturbing for some and maybe even graphic. I’m writing from my heart and letting my fingers flow and I’ll do my best to control just how much I divulge but I need to warn you none the less.After I wrote to tell you all that Ali would not be around for much longer I walked the few feet back to her (From that night onward I was allowed to use the computer in the NICU) and sat all night long watching her and crying. I was so grateful that Ali’s primary nurse was on that night as she loved Ali and was feeling the pain as well. She sat and cried with me until no more tears would come out.Dh arrived the following morning and we spent the next week cuddling Ali and telling her everything about the world we could think of. We also began arranging for us to go to the beach. Around this same time a switch was turned on inside of me and I wasn’t able to cry anymore or even grieve. I began living each day as if the end wasn’t near; when we spoke of her life ending I felt as tho we were talking about someone elses baby. I was so worried about this and felt unbeleivably guilty that I could no longer cry ut a councellor explained to me that this was how my brain was choosing to cope. That I could spend each day crying or living each day to the fullest and enjoying every second I had left with my beautiful girl.
Last Sunday dh drove me to a couple of the beaches that were mentioned and I couldn’t believe it; no offence to those who live in Vancouver but it was NOT what I had imagined. Where I’m from the beaches are much more secluded and raw, a place where we could spend time with Ali in private. These beaches were not private at all and I just didn’t feel right about it. Luckily that same day we had a meeting with a bunch of doctors and hospital staff (chaplain, social worker) along with some doctors from a place called: Canuck Place Childrens Hospice. It was decided that on Wednesday we would be sent there and Ali would be extubated (she had to be intubated during her surgery as they caused a lot of trauma to her airway) and live out the rest of her days in a home like environment.I was terrified; the NICU had been our home for almost 4 months...I had actually been living in the hospital for the past week! Everyone kneew us there and loved Ali so much. They were so good to us. They actually brought in a cot for me to sleep with Ali in. In the actual special care NICU....they have never let anyone do that before.The day we left there were so many tears from nurses, doctors even the janitors. Ali had touched so many lives you couldn’t help but fall in love with her. I finally broke down the morning of her transfer to Canuck place; one of the paramedics who was doing the transfer was the same one who took us while I was still pregnant to BC Childrens via helicopter...the night that Ali was born. I felt like he was there for the beginning and then the end. The thought was so sad that I couldn’t even stand anymore, I lost all strength and sat bawling as they started packing everything up to go.
Canuck Place is beautiful, it’s a huge mansion in a gorgeous area. We were given 2 rooms...one on the 2nd floor where the doctors and nurses are and another on the top floor. I soon realized that we were given the two best rooms and that Ali’s nurse was just looking after her, no one else. We were getting special treatment as they knew we wouldn’t be there for long. Ali’s primary nurse came with us on Wednesday for emotional support; she has become one of my closest friends and I will never forget what she did for all of us, she is a very special person.Ali was extubated at 2pm on March 11th (wed) in bed in the most beautiful room I had ever seen. We lay in bed, me holding Ali and dh holding me as they pulled out the tube. I was shaking so badly I thought I might hurt her. She gasped and had a hard time at first but then fell asleep and breathed fine! She was so happy to have the damn tube out!!!!
We took her out for a walk in a pram and that’s when she started to talk. You see, Ali has a problem with her muscles as well as a small airway. Her muscles get so tight that she has only been able to cry twice before...once when she was asleep and the other when she was sedated. She started squaking away in the pram and it was a miracle. We couldn’t believe it!I ate dinner with her on my lap babbling away; we called all our family memebers so they could hear her voice as well. She gave us the most amazing gift that night, it felt as tho we were living a normal life and it was such a blessing.The next day we went for a walk through the gardens and sat in this beautiful little place with stone walls, iron chairs, flowers and sun shining down.
We laughed and played with her for quite a while. I actually mentioned that if she had to go this would be the place. About 10 minutes later as I held my little Ali in my lap she stopped breathing. I panicked and kept begging her to breathe, I got the nurse to bag her but you could tell it was hurting her and not helping so we stopped. I grabbed her and ran into the house with dh sobbing. The doctors followed us into our room where we sat for a while while we cried and sang to her. Then Ali decided she didn’t want to give up once again and started breathing. It was horrible, her mind was pretty much gone from lack of air but she kept fighting. Dh and I held her, danced with her, cuddled and begged for her to let go for over 6 hours.
While this was going on we took turns calling our families, I also called her primary nurse who was back to work.At 8:40pm Ali gave up her fight while laying tummy to tummy with me. I knew the insant when it was over and I was flooded by such dispair but also relief that she could finally find peace.Throughout it all my dh kept saying over and over what a wonderful mom I was, how much he loved me and how he couldn’t go through something like this with anyone else. I fell even more in love with him that night. Ali once again brought us even closer together.
Ali’s primary nurse left work to come be with us. She helped me put Ali in the dress we had chosen for her to wear. Held her and kissed her goodbye. I held Ali for 3 more hours until I gave her up to the funeral home. It killed us to let her go but we knew we coldn’t keep her for the night.
So my little girl is gone, I truly believe she’s been an angel from the day she was born; they’ll never find a diagnosis for her as she is one of a kind, made to be the way she was for a reason. She was the best thing to ever happen to us and I will never forget her. I want her back so badly and pray that if we do have future children she`ll bless us with a glimpse of herself within them. A neonatologist who worked with Ali came to visit her while she was passing away. This is a man that has worked for so many years with so many babies and has probably lost quite a few as well...yet when he saw Ali I could see him trying to fight the tears. He bent down and gave her a kiss while holding my hand. That`s the kind of love she brought out of ppl. BC Childrens NICU will never forget her, actually I think that anyone who has ever even seen her picture won`t be able to forget her.I saw the thread `Candles for Ali` thank you so much, it warmed my heart to see once again how much Ali has affected those around her.
When you think of it look up to the Heavens and thank Ali for just being her, that she was so beautiful inside and out and how she will be dearly missed. I have a feeling she’d appreciate it."
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