Full name: Michelle Valiukenas
Name of Preemie: Colette Louise Tisdahl
Gestation at Birth: 24 weeks, 5 days

Nothing is ideal, but let’s get as close to ideal as possible. – Michelle Valiukenas

My husband Mark and I struggled to conceive, eventually going the fertility treatment route. On our first round of IVF, we got pregnant, only to miscarry our beloved Sweet Pea shortly thereafter. Then, on our third round, we got pregnant with Colette. We were so excited although also timid given our miscarriage. When we got past the terrifying first trimester, we were flying high, thinking everything was great. At 21 weeks pregnant, at a standard OB appointment, my blood pressure was 188/110 and I was sent to labor and delivery. There, I was diagnosed with severe preeclampsia and told I would be hospitalized until I delivered. After three weeks in hospital, the doctors recommended delivery. Colette was born via emergency c-section on May 23, 2018. The doctors and nurses had warned us repeatedly that she was too young and would not cry or make any noises. After they pulled her out and said it’s a girl, the room quieted down and I heard this tiny but powerful squeak. I asked, is that her and they said yes and then started remarking about how they couldn’t believe it. Whether I said this aloud or just in my head, I thought of course I can believe it, this is my badass daughter that will defy all the odds. Colette went straight to NICU where she spent her short life. NICU was a series of ups and downs with Colette being super tiny and her lungs fighting, but she also had a spirit that you sensed immediately, a spirit that was much bigger than her body. I often think that her spirit could not be contained in that tiny body and that’s the reason why she left us. After nine days, Colette’s lungs could not keep up and she gained her angel wings. She died in our arms, surrounded by her three living grandparents, her two aunts, and her two uncles, on May 31, 2018.

In her memory and because of our experiences, my husband and I started The Colette Louise Tisdahl Foundation. Our mission is to improve outcomes of pregnancy, childbirth, prematurity, and infancy, as well as aid in the grieving process through financial assistance, education, and advocacy. I run this nonprofit now and our financial assistance program has helped over 800 families in 40 states; these are families in crisis due to high-risk and complicated pregnancies, NICU stays, or loss.

PREEMIEWORLD:  What is most important to you that we remember about your daughter, Colette?

Her spirit. She defied all of the expectations medical professionals had of her. She squeaked when she was born in what a friend named “the squeak heard around the world.” She used her tiny body with its long arms and legs to the best she could. She would lay in her isolette and try to take the tubes out of her nose with one arm. She would try and try and try and then she would seem to give up, only to take the other arm and try and try and try again. She was determined, she radiated love and energy, and her spirit lives on in the work we do with The Colette Louise Tisdahl Foundation.

PREEMIEWORLD:  What would you like other parents to know about prematurity and loss?

It’s not your fault. I think that’s the hardest thing to overcome, especially for those of us who were pregnant. Our societal view seems to be that pregnancy is this magical time and that getting pregnant automatically leads to a healthy baby in your arms. But, the truth is that a lot of things can go wrong and it’s no one’s fault.

I also wish that there had been more talk about the fact that babies in the NICU can die, even after the initial first days. With Colette, I honestly thought once we got past the first 48 or 72 hours, she would survive. My thoughts were more on what medical issues she might have, whether she would have a disability, what life would look like with a special needs child. So when things happened, I was in denial but also shock because I honestly believed there was no way she could die.

I also want to say that preemies are amazing and they do amazing things. I am the proud sister of a preemie baby who is now 35 years old and if you didn’t know her story, you would not know that she was born eight weeks early or that she required so much treatment and surgeries in her first few years. There is no way to predict what will happen with your preemie, but also trust the doctors, nurses, and most importantly, your child. Also, remember that you are the parent and you know best for your child, even if the medical complexities make it appear like you do not. Push back, ask questions, advocate for your child when you think something is not right. The NICU feels sometimes like parents are just visiting, but you are parenting and give yourself the permission and the push to do so fully.

PREEMIEWORLD:  What would you like preemie professionals to know?

That parents are much stronger and more resilient than we often give them credit for. Be honest, direct, and real with them. There tends to be such a stigma about talking about death, as if talking about it makes it contagious. Treat parents like parents, lend them support and help, but trust their parental instincts. Parents, like their babies, do not have to be treated like porcelain; they will not break.

PREEMIEWORLD:  What support groups/organizations/products have helped you through this process?

Channeling my grief into setting up and working on Colette’s foundation has been amazing and invaluable. I also found a lot of support and help with Pregnancy After Loss Support.

PREEMIEWORLD:  What advice would you give to other loss parents:

Grieve however you need to and in whatever way works for you. There is no one way to grieve and no one will grieve like you do (even your partner). Grief does not have a beginning and an end and particularly, when it comes to losing your child, it never goes away. It does evolve and get better, it moves from the absolutely dreadful, terrible, can’t get out of bed days, although some of those days will still pop up every once in awhile. You don’t stop grieving, you develop a new normal in which you live your life, even parent other children, while still leaving space for your child and your loss.

Also, I cannot say enough how important it is to get help and support. Find an individual therapist that has experience in grief and trauma and that you connect with. It may take a few tries, but that person will be invaluable as you go through life after loss. If you feel like you can use it, find a couples therapist. And above all, find fellow loss parents. Try a support group or a few, find your group that understands, that has similar experiences because as life moves on, non-loss parents will find it more and more difficult to understand and relate to your experiences and the triggers you encounter along the way. Having fellow loss parents who not only hear you, but also really understand you is so incredibly helpful. I honestly do not know what I would do without my sisters in loss.