Joy with her eyes open on day 3 in the NICU
What were the circumstances surrounding your child’s birth?
I was diagnosed with 100% placenta previa at 17 weeks pregnant after a major hemorrhage while on a school field trip with my high school students. I was in and out of the hospital on bed rest and had three additional life threatening hemorrhages requiring numerous blood transfusions until the delivery of my daughter at 23 weeks.
What complications, diagnoses or surgeries did you or your child face?
I needed a hysterectomy and 20 units of blood after my daughter’s delivery due to placenta accreta. My daughter weighted 1 pound and 4 ounces (575 grams) at birth and was 11-3/4 inches long. She was intubated upon admission to the NICU and remained intubated for 1 month and 2 days. I did not get to see her for two days due to complications from my surgery. Once I met her we decided to name her Joy. Joy had a major blood infection at one week old that was treated with antibiotics and a large PDA. The infection almost killed her but subsided after a week. Her PDA closed with medication and did not require surgery. I finally got to hold her by kangaroo care when she was one month old. It was amazing. That month was torture. Not being able to hold your own baby for over 30 days is something I would not wish on my worst enemy.
Joy with Mom
I have thee boys who were 7,5 and 3 at the time and it was a constant juggling act between spending time in the NICU, spending time with my children (who were out of school for the summer) and pumping every two hours. Joy had some gains and setbacks as she grew and remained in the NICU for a total of 121 days. She came home 1 week after her due date. Joy had stage 1 ROP that resolved. Joy was left with BPD which is only an issue when she catches a cold. She is on inhaled steroids daily to minimize her lung issues. Joy spent two weeks in the hospital when she was 11 months old due to pneumonia caused by a respiratory virus. Since then her colds have not been as bad.
How old is your child or children now and how are they doing?
Joy is now 15 months old and almost walking. She seems not to have any muscular issues or delays. She appears to be on target with her corrected age (due date) as far as milestones go. Joy loves to eat and play with her brothers.
How did your whole family cope with this experience? How are you all doing now?
Our family had a difficult time for a while, but are all OK now. My youngest son had a very hard time when I was on bed rest in the hospital and when I was spending a lot of time at the NICU. My husband had to do most of the house work and care for the kids when I was in the hospital and that was stressful on him. We all made sacrifices when we need to and I think we are all better for it.
What did you learn about this experience that you’d like to pass on to others?
It is true that having a baby in the NICU (or a sick child of any age) is a very difficult experience but families should always have hope. Miracles can happen and hope can turn into joy.
Is there anything else we need to know?
While Joy was in the NICU I began to journal about her progress and setbacks and my emotions. A few weeks after Joy was home I read it and realized that we had a story to tell, hence my recent publication of my memoir entitled From Hope to Joy: A Memoir of a Mother’s Determination and Her Micro Preemie’s Struggle to Beat the Odds. I think a lot of people could use a happy ending. I do realize it may be hard for families that lost preemies to read and I feel terrible about that. But, I think that it honors their memories.