We’ve been eagerly waiting for this day. July 20th…Peanut’s 1st birthday!
I remember every moment, every sound, every smell, every emotion from July 20th, 2012. Here’s the short version of what I remember. It was a Friday. I was 30 weeks 5 days gestation. I had been on bed rest for almost four weeks…it was as HOT as heck…the house was very quiet. Sissy and Potato Boy were spending time with their dad and step-mom, Lulu was at daycare, and the DH was at work. Pip was laying on the front porch, just outside the front door, staring at me through the glass. It’s as if she knew that today was the day, and she didn’t want to miss a minute of it. That should have been my first clue. That’s my Pip…always on guard! It was a little past 9am, and I had just resumed my Law & Order: SVU mini-marathon on Netflix that I had planned for the day. I was on season 4, episode 9. The second clue came soon after…the unmistakeable ache of labor pains.
From that moment on, the events of the day went fast. A quick phone call to the DH. I knew there was no stopping the labor this time. While he was on his way home to pick me up (he made it in record time by the way), I frantically finished the packing that we haphazardly started but never finished weeks ago when I came home on bed rest. I called my mom to cry and have her calm me down…which she did. Which she has often done. The DH arrived shortly after…parking on the lawn just inches from the backdoor which sent Pip into a tailspin of barking, whining and pacing. And we were off to Dubuque.
We arrived at the hospital where they found that my labor had progressed too far to send me to Iowa City. So I delivered via cesarean (Peanut was frank breech – butt first). A rough start – it took them a while to resuscitate Peanut (which I knew nothing about until a few days later). The air ambulance was already there to take her to the University of Iowa Children’s hospital simply based on how premature she was. They brought her by my room on the way out…my goodness…she had tons of beautiful dark hair! I remember laughing out loud!
A quick kiss from the DH, and he and his mom were out the door to follow Peanut to Iowa City. The next few days were a flurry of picture messages and phone calls until I could join the family at UIHC. Peanut suffered from some of the typical preemie set backs, but the doctors were cautiously optimistic that she was completely fine.
Day 9 – Peanut was doing great, the DH returned to work, and I was able to get moved into a room in the Rossi wing of the hospital. I stayed in Peanut’s room in the NICU until around 10pm, and then headed up to my room.
Day 10: July 31st, 2012 – Approximately 5:30am I woke up to a phone call from the nurse practitioner on duty. She explained that in the past few hours, Peanut became very sick and they thought she had something called NEC or Necrotizing Enterocolitis. Peanut was already on antibiotics and they were taking x-rays of her abdomen as we spoke. Somehow I managed to hold a breast pump in one hand, while Googling NEC on the computer with the other, all while talking to the DH holding the phone with my shoulder. 10 minutes later I was down in the NICU and the DH was scrambling to make the trip from home to Iowa City. After I was buzzed into the NICU and went through the whole hand washing procedure, a resident doctor was waiting for me and lead me back to Bay 1 (the critical unit) – Peanut was in Bay 3 just an hour earlier. They explained what the NEC disease was, and that her case was so severe that surgically removing the infected intestine was her best option for survival at that point.
The DH arrived shortly before 8am, in just enough time to speak with the surgeon before we were sent out of her room so the surgery could begin. Naively, I thought that the surgery must not have been that big of a deal, seeing as how it was a “bedside” surgery and they didn’t even need to take her to an official surgical room. Later they explained that she was too critical to move at that point, and the time they saved by not waiting for a surgical room and moving her, could have been the difference between life and death. The disease moves that fast. So we sat in the waiting room (with some of our relatives) and held our breath.
About an hour later, the pediatric surgeon emerged from Bay 1 and explained that they had to remove 10 inches of her small intestine (the entire ileum). Still naive, still holding our breath. It could have been worse, right? Good thing I didn’t exhale just yet….they explained that the next 24 hours were critical. Doesn’t that sound like a dramatic line you hear in movies all the time? They say that because there are no guarantees. Peanut was stable, but critical.
Day 11: August, 1, 2012 – Peanut’s vitals did not improve – extremely high heart rate and high blood pressure. A sure sign to her doctors that something was still wrong. Antibiotics and pain medication were not helping either issue. At 10:30am Peanut was back in an exploratory bedside surgery. We weren’t naive anymore – we were scared and we were at our breaking point. Fearing the worst, we asked our family not to come down for this surgery, we couldn’t handle seeing anyone. When they opened her back up they found that the NEC had spread to her colon and they had to remove the entire large intestine except for her rectal stump. Because they were uncertain if the NEC was still brewing inside the remaining intestines, they made the decision to leave Peanut “open” with the remaining intestine sitting on her abdomen protected by a clear plastic bag called a silo. This way they could literally watch her remaining intestine to see if there were any changes. They explained that she would remain on a paralytic and on morphine so that she wouldn’t move or feel any pain during this time. The surgeon tried to prepare us for what we were about to see. Although he explained it very thoroughly, nothing can quite prepare you to see something like that. She was unrecognizable from 48hours before.
Thankfully, it didn’t take long to see the results of the second surgery. Peanut’s heart rate – a key indicator of how she was feeling – slowly started to fall over the next 24 hours from its peak of 215 beats per minute back to 130 beats per minute, normal for an infant her age. A sense of cautious optimism was back (it’s not everyday you see a nurse do a happy dance while reading lab results) and Peanut started her long process of recovery. Peanut remained medically paralyzed with her silo for seven LONG days, until they felt the worst had passed and then performed another surgery to close her and create her stoma.
There’s no better way to explain this past year than to say that going from this…
…to this…
…is nothing short of a miracle.
We started blogging about Peanut shortly after her third surgery (to remove the silo). At the time we didn’t go into this much detail about what she went through, mainly because we were still pretty emotional about the situation and we didn’t know what this next year would bring. I think it’s safe to say we are no longer holding our breath…Peanut is happy and thriving. A few weeks ago, I had an aunt say to me “this was probably the worst year of your life, huh?” And I guess to anyone on the outside looking in, it probably seems that way. We definitely had the worst “few weeks” of our lives early on, but all in all, I would say this has been the best year of our lives.
Our family will never be the same, and that’s for the better. We’re better parents to all of our children; we’re more patient; our marriage is much stronger; we have more empathy for others; we know we have support from family and friends when life gets tough. The list could go on and on about the ways our lives have changed for the better over the past year. Most importantly, we know we’re not invincible. Although the things Peanut has endured (and will endure over the years) are not ideal, but she is not terminal or critical. It could easily be worse. Our fingers are crossed in hopes that this next year is a little less eventful. We just plan on enjoying the time we have with all four of our children, and feel blessed each day that we have each other.
Happy 1st birthday, Peanut! Thank you for all that you’ve given us!
Happy Birthday….and thank you for all that you’ve given me!!
Dear little peanut and family,
Google brought me here. My baby girl Victoria was born on Aug 27, 2014 and has been diagnosed with a volvulus of the small intestine 24h after her birth. She has 35 cm left of it (14 inches). We live in a tiny country, Luxembourg, where cases of this nature are extremely rare, reading your blog gave me confidence in her future. I couldn’t agree more with your post on how you feel one year after ‘it happened’, I share all your single words. It changes our lives forever and in some aspect for good.
All the best to you all.
Martina, whose broken heart is a bit lighter tonight.