Putting Together The Pieces

Owen had already been in the NICU for 5 months, to the day, to be exact.  He had just become the second oldest baby in the NICU and we had recently been warned that he may not be home before Thanksgiving, or even Christmas.  During this time, I typically ate my lunch as quickly as I could and then went back to Owen, he was hitting an age that he knew if I was gone and he would only settle for me.

On this particular day, the family room was quiet.  It was just me and one other couple who was quietly being debriefed by one of the surgeons. Their discussion wasn’t any of my business, so I choose the seat furthest away from them and focused on my food.  The surgeon left the room and then I heard the mother in the calmest, most matter of fact voice bravely explaining into the phone that their daughter was very sick.  Her intestines had perforated and she was just out of surgery.  She hung up the phone and the room was silent.

Typical Tatum fashion would have been to finish my lunch as quickly as possible and give them their privacy.  However, something overcame me and I heard myself say, “that’s the calmest I’ve ever heard anyone describe NEC”.  I let them know my son’s intestines had also perforated.  I showed pictures of how he swelled after the surgery and told them how he was doing now.  They explained to me that their 23 week 5 day twins were only one week old.  My heart sank.  I imagined how fragile she must be, never even having the time to stabilize after birth before getting so sick.

Even after our conversation ended, I couldn’t stop thinking about this family I had briefly talked with in the family room.  Two days later I ran into the parents in the hallway.  I cautiously asked how things were going.  The mother took a deep breath and told me that Angene had passed the day before.  We were nearly strangers, I didn’t even remember her name, but we looked at each other, both with tear filled eyes and I asked her if I could give her a hug.  I told her I would continue to pray for her son and we went our separate ways to our baby boys.

Over the next month, this mother and I rarely saw each other but I did figure out her name was Betsy and we bonded on a much lighter note; we are both Packer Fans and both of our boys donned lucky gear on game days.   A month after we first met, Owen was discharged from the NICU.  I thought about Betsy from time to time and we eventually connected on Facebook and through ANRC, we exchanged Christmas cards, but only casually kept in touch.

Fast forward to my bucket list and my admission that I was afraid to start quilting on my own.  Betsy sent me a private message and told me she would teach me.  Over the last three weeks we’ve gotten together three times to work on my quilt.  You would think, not really knowing each other and not seeing one another for almost a year and a half that there might be some awkwardness.  Nope.  Not with us.  By lunch time we were reminiscing about that first meeting and we were both wiping our eyes.  We also laughed and made fun of one another and discovered that she went to high school with my last serious boyfriend before Kyle and that I had lived in her husband’s hometown after college.

In many ways, it felt like we had known each other forever, but in reality, we only met when we needed to meet each other.  Betsy needed that hug that day and I needed to focus on someone else at that point.  Later, when I needed help, in a very different way, she came to return the hug.  And together, we put the pieces together and made a beautiful (even with its flaws) quilt.  Kellen thinks it’s his quilt and wants to take it to school, but I told him it’s too special.  I didn’t elaborate to him, but I will to you.

It’s my preemie mom quilt and a small example of the impact that Angene made in her short time here.

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Loss: My heartbreak & The Honor

In our time in the NICU with Owen, it didn’t take long for us to see that not all babies get to go home.  For the first 100 days of his life, he was in a corner spot in the nursery that was next to one of the spaces reserved for the most imminently critical patients.  Owen’s spot and this other spot were on adjacent walls, so the head of his bed and the other babies’ bed was very close to each other.  If they were both on ventilators (which was nearly always) people often had to turn side ways to walk between the equipment to get to the one side of each baby.  In other words, we were very close.

HIPAA or not, you couldn’t help but overhear bits and pieces.  On two occasions, I heard parents being told there was nothing more that could be done.  On several occasions I heard sobs as parents cried behind the curtain while holding their child that they knew was going to die.  My heart broke with each passing.

One of Owen’s roommates passed during the day while I was visiting.  I returned to Owen’s bedside after a lunch break to see him thrashing in his bed disturbed by the commotion next to him.  I instinctively picked up Owen and watched in horror as the doctors and nurses worked to save the baby next to him.  I knew I had no right to be there, but I couldn’t put my own child down until I was gently asked to leave for 30-45 minutes.  About 30 minutes later, the mother came into the family room with a resident who pointed out the phone to her.  I couldn’t let her make the call to her husband in front of a full family room.  I stood up and handed her my cell phone and told her where to go to make a private phone call.  I waited another 30-45 minutes before I went back to the nursery and waited at the door until Owen’s nurse saw me and said I could come in.  I could hear the mother’s sobs and saw nurses and the social worker come out from the curtain with tears streaming down their cheeks.  I cried as I sat with my hands on Owen’s feet and forehead.

That was Aqueem.  He lived less than 2 weeks.  His loss will forever be ingrained in my mind.  I am one of the few who had the honor of knowing him.  Aqueem was the smallest baby I had personally seen in the NICU; just 400 grams.  Whenever I hear of survivors of his size, I always think of him.

There was also Britta.  She was born on the same day as Owen, the Thursday before Easter.  Britta was full term and, I’ve since learned, was born with minimal brain activity.  When we came in on Easter Sunday, she had the cutest floral Easter dress.  Beautiful Britta with the chubbiest cheeks and blonde hair is who I think of whenever I see a baby in a floral dress.  I saw her mom last night at a Amplatz parent advisory board meeting.  She joined the board as a way to keep Britta’s memory alive.  I’m honored to also be able to do that, even if it’s in a much smaller way.

There was also Louis.  One of Lou’s sister was actually in that critical bed until Owen got so sick they had to move her to perform his surgery.  Lou was on the other side of Owen.  He was Owen’s first best friend.  The nurses and I joked that they had a little game called, “let’s see who can set off the alarms more”.  Louie’s heart rate would dip and then Owen’s would follow.  Owen’s blood pressure would go low and Lou’s would go high.  They were next to each other, but often couldn’t share a nurse – these two guys like to keep people on their toes.  I think of Lou every day.  I hope his parents and surviving sister (they were triplets) don’t mind sharing him with us, but I think of Lou as Owen’s guardian angel helping push him to keep working, just like the games they played in the NICU.  I was honored to be one of the few who knew Lou and to help keep his memory alive.  I wish I would have known his sister, Brooke, who passed away before they were transferred to Amplatz.  But, I know of her and through Lou will also keep her memory alive.

Wyatt was not a roommate of Owen’s, but his mom is my friend.  We got to know each other in the NICU when we were #2 and 3 and then #1 and 2 for oldest babies in the NICU.  Wyatt was born April 10, 2011.  He died November 22, 2011.  Many things remind me of Wyatt.  He’s who I walk for in the March of Dime’s March for Babies.  I think of him on the 10th and the 22nd of each month but mostly, I think of him every night when I see the moon.  His mom has always felt a connection between Wyatt and the moon and since she’s shared her story, I do too.  My iPhone has several pictures of the moon that I take on nights that it’s especially beautiful.  As I scroll through my pictures of my boys, I have small reminders of Wyatt.  I had the honor of knowing Wyatt and I will keep his memory alive.

There were many other babies that were lost whose memory I also will keep alive.  I may not have known them as closely as these four, but every baby’s life deserves to be remembered.

Pregnancy and Infant Loss Remembrance Day

Today is Pregnancy and Infant Loss Remembrance Day.  Instead of detailing the happenings of our family this last week, today is a day to honor the lives of babies who left us too soon and let their parents know we have not forgotten, and will not forget, their children.

Please consider lighting a candle at 7:00 PM local time for the babies you would like to remember.

I will be lighting candles for these angles.

Callan Brian (12/24/10 – 12/25/10)

Finley Daniel (12/24/10 – 12/26/10)

Wyatt Mitchell (4/10/11 – 11/22/11)

Britta Grace (4/21/11 – 5/12/11)

Brooke Christine (4/26/11 – 4/28/11)

Louis William (4/26/11 – 6/13/11)

Unknown (born and passed late 4/11)*

Akheem (~7/10/11 – 7/25/11)

Angene Carmela (9/13/11 – 9/22/11)

Kasey Skyler (Due 1/6/13, Delivered 6/20/12)

 Also, special thoughts to those who have silently, or otherwise, grieved the loss of a pregnancy.

*  For a very short time, Owen had a nursery neighbor that we assume also passed away.  We never met his family or got to know his name, but he was  “big” (likely full term) and really, really cute and, like the other’s, we’ll always remember him.

Feel free to add any baby’s you’d like remembered in the comments.