June - September 2001

David's index finger and DJ's tiny hand

2001 was significant for many, but for me it was surreal.






There was no FaceBook. I'm not sure whether that's a good thing or a bad thing. The distraction would have been nice, but I can't imagine what 9/11 would have been like if we were all on FaceBook or OMG... MySpace (where I could put my top 10 friends in order (and then change the order when one of them wasn't being nice) and we were all friends with Tom).









In 2001, I was working for a small family-owned accounting firm in Jacksonville during the first and second trimesters of my pregnancy with DJ (Spoiler: I didn't have a third trimester). But I remember that we were at the end of tax season and there were only three smells that would make me vomit. Those were eggs, fish being cooked, and "Krystals" burgers. Mind you, the accounting firm was directly across the street from a Krystals location.

This is how the first half of 2001 worked out for me:

2/26/2001: First ultrasound/OB visit.
3/06/2001: I had our first routine OB visit and another ultrasound.
3/12/2001: David and I had our first ultrasound together and heard DJ's heartbeat. I was 10 weeks and 1 day pregnant.
4/3/2001: I went for a routine OB visit. I heard the heartbeat on Doppler and I was now 13 weeks and 2 days pregnant.
4/17/2001: I went for another routine OB visit and I had routine lab work, which showed that everything was great. I was 15 weeks and 2 days pregnant.
5/1/2001: I had a routine OB visit, and I was 17 weeks and 2 days pregnant.
5/11/2001: We had a sonogram, but DJ was uncooperative so we scheduled an ultrasound for 5/18 instead.
5/11/2001: My brother was in a terrible car accident that almost took his life.
5/18/2001: We had an ultrasound and it was confirmed that DJ was a BOY (spoiler). I was 19 weeks and 5 days pregnant.
5/20/2001: David and I celebrated our First wedding anniversary and I was 20 weeks pregnant on the 20th of May.
5/31/2001: I had a routine OB visit, and I was 21 weeks and 4 days pregnant.
6/14/2001: I had a 3D ultrasound done by a perinatologist and he cleared me to travel (with David driving) from Jacksonville to Pensacola for a visit at David's parents house for Father's Day weekend. This was a 368-mile trip, about 5.5 hours, 360 miles of which are spent on the fantastic Interstate-10.

You see, what had happened was: David and I were living in Jacksonville FL (and we still live here). We went to Pensacola (about a 5.5-hour drive) for Father's Day weekend (June 15, 2001). Long story short, my water broke in Pensacola when I was only 23 weeks and 5 days pregnant. 

The doctors in Pensacola and I quickly did not agree. Fortunately, when my water broke, my first call was to my OB in Jacksonville. He said (and I quote): "Candace, you are 24 weeks pregnant. Do you understand me?" I said "Yes sir," and I never questioned why. I now know that the doctors do not have to consider a pregnancy under 24 weeks as viable. So while my Pensacola doctors had to do everything in their power to save my baby, they still continued to focus on telling me the morbidity and mortality statistics for a 24 week pregnancy. This particular doctor also told me that DJ (that was my son's name as soon as we knew he was a boy) was completely in breach. The "doctor" said that I needed to choose whether to deliver him vaginally, but there was a chance his head could get stuck in the birth canal and he would die, or I could have a C-section. I'm not sure if this man should practice medicine. I thought a doctor's first priority was to DO NO HARM. I'm pretty sure that infant death should be avoided, but to this doctor DJ was an not a "viable fetus."

So, I immediately started my plans to get my butt back to Jacksonville. For my mental health too. The Pensacola doctor challenged me and said that I would have no choice because since my water had broken, I would go into labor within 24-48 hours. I said, "I will not be having my BABY in Pensacola." 

ENTER MAMA BEAR: (I did not know I had this instinct). I told that doctor to call my insurance and get it done. He made a deal with me (yeah it was like that). He said that if I did not have any contractions for 48 hours, he would call Mayo (my awesome insurance company at that time, Thank you CSX). So 45 hours later (with no contractions) I told the nurse to bring me the doctor. He entered my room and I said, "Call my insurance now. I want a plane here in three hours." Side note: My parents had dropped everything and they drove from Orlando to Pensacola the very minute I called them (so I had a team). The doctor proceeded to tell me that the flight would cost $10,000 and because I was at a hospital that had the highest-level NICU facility, my insurance would decline to change my facility just so that I could be closer to home.

Well, guess what... Dr. Pensacola was wrong and I was flown by medical Learjet from Pensacola to Jacksonville where an ambulance was waiting for me on the tarmac. That's the closest to celebrity status I've ever been. I'd like to thank my husband's company for always giving us the best insurance coverage and I'd also like to thank MAYO.

I managed to stay stable and on my back and I never went into labor. After 2.5 weeks in the hospital, never allowed out of my bed, my perinatologist finally had no other choice but to deliver DJ on July 6, 2001. I was 26 weeks and 6 days pregnant. DJ was born weighing 1 pound 15 ounces and 13.5" long.

So, this is kind of a picture story about my life 16 years ago. I was consumed.

The first 2 pictures are the polaroids that I was given in recovery and the only pictures I saw of DJ for the first 24 hours, because I had had a C-section and I was not ambulatory. In the second picture, you can see David's hand cupped around DJ's head

David's hand cupping his tiny head

7/6/2001

 

DJ was born in bad shape. He wasn't fully cooked yet. I now know that women with Lupus commonly have miscarriages or cannot carry a baby full-term. Here he's pictured at a few days of age. The arm boards were to keep him from shaking out his IVs. He has scars on every knuckle to this day, as well as a few other battle wounds.

This was my first visit with DJ, 24 hours after he was born.

 

 

This is DJ, 14 days old. He was still on an Oscillating Ventilator, had a few different IVs and a distended belly from a perforation in his lower intestines, which resulted in life-saving surgery and an ileostomy.

This picture was a day after his surgery, still with a blue tone to his skin. He was feeling much better. Also, he had a really cool hat.









This was a few days after his ileostomy. You can see how his skin looks pinker and healthier.

 
Frankly, this is one of my favorite pictures of DJ's stay in the NICU. That teddy bear is special to me. It was the same size as him. That's my hand on his head. I had still yet to hold him. (He's holding the teddy bear)

This is DJ's first time having a feeding by mouth. I was able to provide him with breast milk because I was pumping, as I could not hold him yet. This is also one of DJ's primary nurses, Cherita -- one of his many angels in the NICU.

This is a regular visit for me with DJ. I cannot describe to you the difficulty of not being able to hold your baby. At this time he had a ventilator and 5 different IVs. Eventually he received a central line as his veins were difficult to access.

This was the first time I held DJ in my arms. It's called "kangaroo care." His heart rate and his oxygen immediately improved when he was against my bare chest. It was 7/30/2001. I had to wait 24 days to hold my baby.

Here, the nurse is lifting up his oxygen hat. We called it his "astronaut hat." DJ still had his feeding tube but he was improving.

He's also enjoying his comfy body snuggie that was sent from his Aunt Jennifer.

A Really Snuggly baby, starting to look human.

This was David's first time holding DJ. It was David's 25th birthday. Only one of us could hold him each day. So as his birthday gift, I gave up my turn. That's not easy for a mommy! I still have that awesome hat.

This picture shows DJ's ileostomy bag. I can promise you it's more difficult than changing a diaper. I know this because I had to learn.












This is another of my favorites. DJ was making progress in his incubator. He still had oxygen. It's adorable that even then, he let us know when he needed a little quiet.

This is another of DJ's primary nurses, Diane, giving DJ a feeding assessment. 

Sometimes the nurses would take pictures of DJ for us when we were not there. We left a disposable camera. This was a picture after he'd had a fresh bath.

This was an adorable stuffed puppy that we used to relate his size. I still have this stuffed puppy on my nightstand.

David and his junior both more comfortable; DJ being held and David holding DJ.

This is my Grandmother (born in Norway, which makes her "Fars Mor" to me. This was also her first Great-Grandchild which made her a Great-Grandmother, or (Bestemors Mor) to DJ.

This was my first time feeding DJ. I still couldn't nurse him, but he was still receiving my breast milk because I pumped as long as I could.

That nasal cannula was the only machine assisting him at this time. The other wires were just vital monitors. And this was his first day wearing a special preemie shirt.

At this point, DJ was only needing oxygen. He was showing  progressive growth and we were still hoping to have the ileostomy reversed.

I was so happy to be able to hold DJ and feed him -- even if it was from a bottle.

This was David's first time feeding DJ. All of these little moments were such a big deal for us. After all, we still weren't sure he would survive to come home with us.






The doctors really wanted DJ to weigh at least 5 pounds before they could go in and operate. This picture was taken September 11, 2001. I was sitting at home, waiting for my ride to the hospital to go see DJ, when I watched the twin towers attacked on the "Today Show." I was worried about my big baby in a tall building in downtown Jacksonville.




DJ was in good shape with one exception: His small intestines were beginning to prolapse. This meant that he really needed to have the ileostomy reversed.

But, he was still a happy baby, all things considered, for a baby in the NICU.












This was a very hard day for me. 9/15/2001. This is me holding DJ, just before the surgery to reverse his ileostomy.

                                                                               I remember just crying. I didn't want my baby to be back on a ventilator again.

Here we are, a few days after his surgery. You can see he did rather well.











This was DJ's very first primary care nurse, Diane.

This was our very first family picture as we prepared to be discharged. We were finally taking home our baby, 84 days after his birth.

DJ's very first fully dressed Picture

DJ wasn't quite 5 pounds, but he passed the car seat test. We were terrified new parents, but we were ready to have him home.












So, finally we were off for home. Free of the hospital for now. But for me, September 2001 was quite a different time than for most people. In a country where the news was awash in grief and sadness, I felt guilty celebrating my family's achievements.

Our home had just been built. In fact we had to close on it 7/16/2001. DJ was 10 days old and on a ventilator. So while all this was going on in the hospital, we were literally still building a house. David has to close on the house without me because DJ was having major surgery. The song "Arms Wide Open" by Creed played as David and I relied on our old flip phones and weak antennas. Remember ... 2001.

So while having Lupus (not yet diagnosed until 2010) I went on to have another son, Grant. It wasn't an easy pregnancy. That's mostly because I had very restrictive bed-rest and I wouldn't have survived another round in the NICU. This picture was taken Sunday 9/10/2017 during hurricane Irma. I'm proud of these little boys, now taller than me. I'm also proud of myself and the last two years I've spent working on my physical health. I've busted my butt and made difficult changes to my nutrition and added regular exercise.

Most of this story has been sitting in a "draft" state since last year. Thanks to hurricane Irma, I've had more time to reflect on this journey as I struggled to stay healthy during a storm and the lowest air pressure I've ever experienced in 41.5 years of life. To my friends in Florida and Texas recently affected by Hurricanes Harvey and Irma: I hope you are recovering as well.