18 days can change your world.
Day 1: Ivy was born at 32 weeks 5 days gestation, weighing 3 lbs 9 oz. She spent the first 2 hours of her life intubated, then simply on room air.
Day 4 & 5: Ivy spent most of her time in phototherapy to keep her bilirubin levels down.
Day 5: Ivy nursed for the first time.
Day 6: her IV was removed as she had been taking her NG feeds so well that she did not require TPN (the mixture of lipids and proteins that preemies get via IV) anymore.
Day 8: she was prepared for transfer to a different hospital since she was doing so well. On day 9 we flew in an airplane, her in her isolette, to a NICU closer to home.
Day 15, her NG tube was removed as she was nursing full feeds at every feed.
Day 17 she failed her carseat test. That was the only fail Ivy had in the NICU.
Day 18, she passed her carseat test and she was discharged, weighing 4 lbs 0.5 ounces and only 35 weeks 2 days gestation.
I have a friend that I have never met in real life. She started commenting on my blog about three years ago, and I started reading her blog. We started writing back and forth and we are facebook friends.
I knew how much she and her husband wanted a baby. They struggled with infertility for a couple of years until she finally was able to get pregnant. Her writing exuded her elation over the pregnancy and she was counting down the weeks until she would be a mother.
Suddenly, at 30 and a half weeks, she went into labour and delivered a beautiful baby girl, Rory Rose, in an ambulance en route to the hospital. Miraculously, the baby not only survived, but was thriving. Having had a preemie myself, I was so excited to be able to share that experience with someone. I gave her tips that worked for me, and offered to send her copies of my preemie books (as I was no longer using them). She posted photos of the two of them doing kangaroo care, and of her reading a book to her while they bonded skin-to-skin. After seven days of bliss, Rory became seriously ill with what the doctors said was necrotizing enterocolitis.
Day 9: Rory crashed twice, requiring CPR both times to be revived.
Day 10: Rory seemed to settle into a groove of stability. Her bowels were still questionable, but she was stable. The doctors advised that they would do surgery when she was strong enough to be transported to another hospital and handle the surgery.
Day 12: Rory was improving and surprising doctors left, right and center.
Day 13: The doctors noticed that Rory had suffered a brain bleed and that there could be brain damage.
Day 15: Rory’s brain bleed was very severe and half of her brain was dead. It was also swelling and putting pressure on the other side of her brain. There was nothing the doctors could do for her other than manage her pain. She opened her eyes and looked at her mommy and daddy for about 15 minutes that evening.
On day 18, Rory went to be with Jesus.
I cannot help but look at my Ivy and feel both blessed and guilty. Ivy had such an easy NICU experience that I took for granted. I never once thought that anything bad would happen. I did not know that NEC is not uncommon among preemies. I knew that preemies were more susceptible to brain bleeds, but I never even contemplated the idea that it was even a risk for Ivy. I guess with all the trouble I was having with my own health, I just assumed that Ivy would be fine no matter what, and I was determined to get her out of the NICU and home as fast as we could.
In 18 days, your world can change.
I wish that every preemie baby could go home with their mommy and daddy in 18 days. I wish that Katie could have held her sweet baby girl without all the tubes and alarms and nursed her to chubbiness. I wish she could still be reading her stories while she made sweet sleepy sounds on her chest. I wish that she would have been able to arrange all her clothes in her closet by age and by colour. I wish that she would have been able to try on her cow-print cloth diapers on her and squeal with delight when she saw how cute they were and how big they would make her bum look.
I wish she would not be going home to a baby’s room filled with hopes and dreams that will never be fulfilled.
I’m so sorry.