As we wrap things up for October and Infant Loss and Miscarriage awareness month, we want to thank all of the contributors to our blog. Although these stories have been difficult to read, and immeasurably more difficult to live, we hope that each of them helps encourage you to continue pursuing your dreams of starting or expanding your family regardless of what obstacles and heartaches you have had to overcome.
Our last contributor is Melanie, whose story is truly humbling. How do you decide when it is time to stop fighting and how do you know that you made the right decision? Read Melanie’s story and see how she and her husband, Earnie, faced a decision no one would ever want to make. Her story of gratitude, compassion, and incredible resolve speaks volumes to the strength that facing fertility puts in all of us.
Cheona’s Story:
On May 30, 2012 I held my daughter for the first, only, and last time. Her name is Chenoa Rose Widener and she was beautiful. My infertility story spans several years and includes trying the old fashioned way to needles, pills, blood draws, ultrasounds, many artificial inseminations, a miscarriage, invitro fertilization, a pregnancy with twins, premature labor, loss… and hope.
I had a fairly uneventful pregnancy besides being extremely sick in the evenings. In the beginning of May, my doctor confirmed what we had suspected; I was going to be having a boy and a girl. We loved the name Chenoa and the meaning (white dove) and picked our son’s name as well, Gage. We were beyond excited and felt that after years of struggle, we finally were going to have our complete family. I rubbed my belly and talked to them and called them my little baby birds. A week or so after that appointment I had felt them kick for the first time. And a week after that, in what can only be described as surreal, I found myself in the hospital at 23 weeks 3 days after my son Gage’s water bag broke at work. The first hospital sent me off and told me that as 24 weeks was the age of viability for a pregnancy, they would do nothing for the babies if I were to deliver that early. Off to the second hospital I went.
I received medications to try and stop the contractions, steroid shots to help the babies lungs, and Magnesium, which is really just a nice way of saying, “Fire-in-a-bag.” (Google it if you don’t know what I mean). My contractions stopped and I began what would be one week of bed rest. During that time, the nurses came in quite often to monitor both of the babies. It was determined that Gage had very little fluid and was kind of “huddled in the corner.” Chenoa’s water bag was in tact and both babies were doing well. A week later, on Tuesday, May 22nd, I went into labor. The labor happened very quickly and before I knew it, my babies were whisked away into the NICU. I didn’t get to see them until hours later. They were 24 weeks and 3 days.
At first both babies were stable. Critical, obviously, but stable. Both were on vents and meds but we were optimistic even though the statistics were grim. I was in a state of shock as I realized that the 1 lb 7 oz and 1 lb 6 oz babies in the incubators were mine. Gone were my visions of chubby cheeked babies, balloons, celebratory dinners and happy homecomings. I couldn’t even comprehend that I wasn’t pregnant any longer; I had maternity clothes I hadn’t even taken the tags off, a maternity photo shoot scheduled for May 20th (which I had missed as I was on bed rest) and a family baby shower planned in June.
The next few days were a blur but sometime on Thursday night, after my husband Earnie had gone home to get things ready for my return home the next day, I was told that my daughter was in distress. I went to see her and the nurse told me they were having a hard time getting her to settle down and she seemed quite irritated and had been that way all day. I tried not to worry but it was impossible. By then, worry had a grip on us so tight there would have been no way to break free.
Around 12:30 am I received a call in my room from one of the ISCU doctors. I knew that whatever they were going to tell me couldn’t be good, as they had stressed “no news was good news.” She told me that they suspected seizure activity and that they had given her a medication called Fentanyl to try and calm her down. They would do a scan in the morning but she wanted to let me know that things were quite serious. I immediately called Earnie and filled him in. I called a nurse and asked for assistance back down to the NICU. By then, it was probably 1 am and sleep was not going to happen. I visited her and talked to her and questioned the nurse about her. She pretty much told me the same things the doctor had.
The next day, a doctor came in and told us they had done a scan and they suspected a brain bleed but they were going to get another doctor’s opinion. In between visits with both babies, we started getting my stuff together to leave the hospital. I have no idea what time it was when they told us the news. They had us come to the ISCU to look at the scans and so that they could explain everything to us. Two doctors were sitting in front of the screen and they had us pull up chairs to review the scans. We had no idea what we were looking at or what any of the medical jargon meant. We were told that they suspected that sometime Wednesday night or Thursday morning, she had suffered from a Stage 4 (the worst), bilateral (both sides) IVH (brain bleed). We were told that if she survived, and that was a big IF, she would have severe, severe medical problems. We were told her tiny little veins and tiny little body were just not strong enough to pump her blood and somewhere a vein had burst. We were told that sometimes with minor bleeds, the blood could reabsorb but that with a bleed this severe, that usually does not happen. We were told we had a choice.
A lot happened in those next couple of days. On Friday, Chenoa was given a medication to paralyze her so she wouldn’t expend any unnecessary energy. I’m going to guess and say that it was on Sunday afternoon when it dawned on me that she still wasn’t moving. I said to her nurse, Megan, in what was both a question and a statement, “She’s not moving.” She replied, “No, she’s not.” I said, “When was the last time she was given that medicine to paralyze her?” She told me the last dose had been about 24 hours before. I said, “But she’s not moving. At all.” We looked at each other and as our eyes met, I realized that Chenoa was not going to get better. This was not going to go away with time or prayers or medication. Megan must have seen this finally register, the dots being connected, and she said, “Let me go get the doctor.”
And so began the discussion of our options as parents. We could let nature take its course and see what happened. If she survived, which was not likely, she would more than likely be severely disabled. She would be on machines for the rest of her life. She couldn’t talk, eat, crawl, walk, or play. We were told to consider her quality of life. We were told we could remove her support and let her pass. They told us she might go in a few minutes, a few hours, a few days. We were told that there was no right or wrong decision. At this point, we had no idea if Gage was going to survive and if he did, what issues he may or may not have, but we were asked to consider that if he did survive and if Chenoa lived and had such severe medical issues, how that might effect our family. . . .would it be fair to Gage? Fair to us? Fair to her?
On Monday, we visited the babies. I still had not been able to hold either one of them. I spent a lot of time at Chenoa’s bedside. Through tears and sobs, I read books to her., sang, talked to her and told her stories. I recognize now that I was trying to experience “normal” things with her that I knew I wouldn’t get to do later. . .whenever later might be. I recognize now that I was both desperate and desperately in love. We arranged to have a parent meeting on Tuesday afternoon to further discuss the situation with the doctors, her primary care nurse and my social worker.
Earnie and I talked and talked and cried and held onto each other. That night our decision was made. We would remove her from support on Wednesday the 30th. We couldn’t stand the thought of her living in pain, if living is even what you’d call it.
I went to bed crying and woke up crying. I hadn’t even known that was possible. Had I been crying in my sleep? We showered and dressed. How do you pick out what you are going to wear when your baby is going to die? I brought a special blanket and asked that she be wrapped in it. She was too small for clothing and I didn’t want her in just her impossibly small diaper. Earnie requested that the room we would be placed in have a window—he wanted sunshine.
She passed away at 2:36 pm while in my arms. I never wanted to let go of her, but finally it was time for us to go home. On shaky legs, I fell down in front of the receptionist’s area and had to be helped up. I don’t remember how we even managed to make it home. I don’t know if we talked to anyone or each other. But something I will never forget is seeing two doves fly out of the pine tree we have planted in our front yard as we got out of the car when we arrived home. My two baby birds, flying together, forever.
And here we are, 16 months from such a painful time in our lives. Gage spent 4 ½ months in the hospital, fighting a tremendous fight, and came home on October 5, 2012. Today he has a clean bill of health and is a happy little guy, trying to walk, saying “Dada” and “Dog” and playing with his toys. We are so grateful for him and are constantly in awe of how far he has come. But I’m not going to lie—our days are bittersweet and we feel incomplete. As a mother, I often physically ache for my daughter. I struggle with the duality of our situation. The pain that we feel has shifted from acute to more of a melancholy feeling but it’s always there, right below the surface. And yet we strive to find the joy and beauty in life so that we can be the best parents we can be to Gage and honor Chenoa’s short, precious life.
May you rest in peace Chenoa Rose. We love you and miss you so very much.
Thank you Melanie for telling Chenoa’s story. You and Earnie are an inspiration to so many of us and a testament to what represents strong, inseparable couple. Melanie and I have been in each other’s support circle for many years through IF, and loss. We have seen many ‘BFP’s’ and many ‘BFN’s’. She was a part of my absolute very first real support group, a private Facebook group for ladies going through IVF cycles. These groups bind relationships and help encourage and support you when you need it the most. If you are not part of one, find one, and if you can not, send me an email and I will help you find one. Infertility/Loss, whatever you are going through there are folks that can relate, empower and educate you. Reach out and do not go through this alone.
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Beautifully written, Melanie. I am glad you are able to honor Chenoa by telling her story. I know she is proud of her strong mother and grateful she didn’t have to suffer. You made a brave and self-less decision. Now she can rest in peace and watch over you. Love you girl, Megan K.
I can’t find how to email you… Can you point me to a Facebook group for IVF? I’m starting an fet cycle and would love to be able to talk openly with others in the same shoes. Thank you!
Yes I can! Our email address is ourmisconception@gmail.com, send me a message or connect with me on our – Our Misconception FB page and I will get you linked up to the right group!