From Josefa (Mom):

 As a mother of two preemies, I want to share my experiences with parents who are facing what I went through almost 21 years ago. My hope is that the story of my children may encourage other parents while they are facing difficult situations.

Flashback to 1993:  due to my severe pre-eclampsia and critical condition, I was rushed to the hospital. There, I delivered my eldest daughter Joyce by an emergency caesarean section. Before the delivery, the pediatrician had told me what to expect with a baby born that early; if my baby survived, she would definitely have a very rocky start, and there were the possibilities of brain damage, respiratory problems, and blindness.

Joyce was born three months premature at two pounds and seven ounces. Since her lungs were not well developed, I had delivered a silent baby. She was then quickly taken care of by the medical team and placed inside an incubator. It was heart breaking and scary seeing my miniature Joyce covered with different tubes, wires and monitor pads.

Joyce survived from bleeding lungs after surgery on her second day of birth. Against all odds, she gradually gained weight by grams, and took more milk by milliliters. She no longer forgot to breathe, and had fewer tubes and wires covering her body. And finally, I could bathe her in the famous salad bowl just outside the incubator. After two months, she graduated from the NICU, weighing four pounds. I am very grateful to have had one of the world’s best medical teams looking after Joyce, and from whom I had learnt how to take care of her at home.

The early years for Joyce were absolutely challenging, especially when she was hospitalized for very bad pneumonia. I was trained by taking care of a little girl who got sick so often, to the point where Joyce called me “Doctor Mom”! Despite the difficult times, Joyce was a happy and intelligent baby.  Now, she has grown up into a healthy and smart young lady with a big heart.

As a mom of a preemie, there were moments of anxiety and emotion. Will my baby girl be alright? Will she forget to breathe again? How will I produce enough milk for her? When people stared at me and my small baby, I wondered why they did not ask me for the real story, instead of forming judgments. Even when she was brought home, the questions continued. Will Joyce get pneumonia for the fourth time if I let her play in the snow? Will she stand up for herself if she is bullied at school? I do not know how many nights my pillow was wet with my tears.

Of course, there were also countless joyful moments. When Joyce cried for the first time; when she always giggled whenever I said peek-a-boo; when she finished the whole bottle without spilling any; when I witnessed her achieve every small step. Then, when she drew me beautiful pictures, made me pretty cards and crafts, and when she entered university with a top scholarship.

All in all, I cannot ask for a better daughter; I am so proud of her, and thank you Joyce for making a better me and a proud mom!

From Joyce (Daughter):

A newborn baby pierces the room with a cry for air, and with her eyes open and fingers outstretched, she is ready to explore the world. That was the delivery my mother should have had, but when I arrived three months early, the surgical room was silent. Before my mom even got to see her baby, the doctors whisked me away. They later revealed that inside a body that was smaller than a tissue box and weighed about the same as two oranges, my lungs, eyes, and immune system were very underdeveloped.

Improvements in my health over the next weeks at the NICU can in part be attributed to the fantastic health care team who had so much knowledge and dedication. Their ability to console worried parents, and to communicate openly about their child’s health, made them a source of stability and honesty during unpredictable times. However, despite the excellence of the health care team, I would not be leading a healthy life today were it not for my parents.

My birth was risky, but my parents were the true risk takers.

Often the odds seemed stacked against my survival, but my parents still committed all of their love. Questions of whether they would be able to see me grow stronger, reach my first birthday, or my high school graduation crossed their minds every day. What kind of music, sports, and ice cream would our daughter like? Typical questions that other parents would certainly find answers to in time. Yet, for parents of premature babies, there is a fear of not having enough time with the child.

I admire that when facing this uncertainty, my parents acted with courage and hope, holding on to that silver lining. And even though they initially did not know how to care for a baby so small and with specific health needs, they took every opportunity to be involved and to learn.

After the stressful months at the NICU, I was finally permitted to go home – but it was not smooth sailing yet! Every night my parents’ sleeping was interrupted with the crying of a baby who did not want to rest (or cooperate during meal times, baths, or trips in the stroller for that matter). During elementary school, guess who had to help out on projects about pioneers, prairie dogs, model cars, and Costa Rica? Dad and Mom.

Fast forward to this September, and I will be entering my fourth year of undergraduate study in the Arts and Science Program at McMaster University. Now it seems that I am the one asking a lot of questions. In which direction is my career, and how am I to tackle this thesis? Despite living more than an hour’s drive away from home, they visit me on weekends, bring me delicious food, and are quick to offer sage advice.

This story began on a slippery slope, but I am grateful for where we are today. The small scars on my arms and heels from the needles I had relied on almost 21 years ago in the NICU still remind me that life is a gift. Above all, the scars remind me of the support, strength and unconditional love of my parents since day one.

The post Life Inside (and Outside) the Incubator: A Mother and Daughter Collaboration appeared first on Your Health Matters.

Mother’s Day can be a complicated celebration if your baby is in the NICU. On the one hand, you want to enjoy the day, and appreciate all the wonderful and beautiful things you’re discovering about your baby! On the other hand, you are caught in a strange world of beeping machines and artificial light, and you are not quite sure if your life will ever return to normal, and indeed you’re not sure of what “normal” even is. You are full of love and fear and joy and grief and gratitude and anger and hope, and there’s no greeting card that fits.

So what gift can we get our current NICU mothers, who are in the middle of such an emotional storm? We held a Mother’s Day tea today, with treats and goodies provided by staff and graduate parents (and beautiful bracelets from a graduate mom).  It was so nice, but perhaps the nicest part of it was seeing current NICU parents talk with graduate parents, and hearing conversations like, “When was your daughter born? OH! At 24 weeks! That’s just like my son!” One parent whose baby is with us now said, “It’s nice to see that the NICU doesn’t last forever.”  So this is one gift we can give: the knowledge that this will not last forever, and that there is a light at the end of the tunnel.

The other gift we can give is our support and our help. Those of us who’ve been through it can share what we have learned, and hope that it will help these newer members of our special NICU parent club.  We asked our graduate families to share what they would like to say to other NICU moms on Mother’s Day, and here’s what they said.

• Although this is an unconventional Mother’s Day, with the baby(ies) in the hospital, cherish the moments and remember that there are many more to come. Also, remind yourself that we preemie parents get to have our children that much longer than the average parent – one bright side of having a preemie!
• I found it got easier then harder then easier … and I think we are in a great place now at 16 months corrected. I enjoy every moment with her and it’s not that hard any more.
• Words of wisdom: never give up hope. Miracles take time to turn into greatness! Stay strong mamas.
• My advice is to kangaroo your baby (or babies!) as much as possible. Feeling the physical connection really makes a difference to the emotional one.
• Attend rounds; ask questions, talk about your baby(ies), and don’t be afraid to give your thoughts. Do what you can with their care; change bums, take temperatures, give them baths. You can’t make a mistake, you’re a mum!
•  It may not be as you envisioned it, but your baby(ies) love you and need you. The NICU has them a short time, but they’re yours forever.
• Talk to your baby at any moment in a day and express your feelings.
• Please never think to yourself, “What did I do wrong”, because the answer is “Nothing”.
• Never give up hope and find the courage and strength that you need in your little one, because he or she will be your life long hero.
• There are many ups and downs with lots of tears but you will get through it and you will find out how strong you truly are.

And one final, beautiful, kind and true thought: Happy Mother’s Day to all those in the NICU with their babies, to those who have lost babies, to those who are home, and to all the wonderful nurses and doctors who are taking care of our babies instead of being at home with their families.

(Art provided by one of our NICU graduates. The first image is a bit more traditional, while the second is of a unicorn who can make rain go away with her magic horn, because that would be a good Mother’s Day gift too.)

The post A Mother’s Day gift for NICU moms from NICU moms appeared first on Your Health Matters.