Avett’s Birth Story

This post is a little different than most of my posts..this posts tells you how my 4th baby ended up being a NICU baby.   As a photographer, I had dreamed and thought about getting to take my babies pictures myself.  I had hired a friend to come and do a Fresh 48 session for us, and she was going to be there when my older 3 kids came to meet their new brother.  That was my plan, anyways.

Instead, when I was 35 weeks pregnant, my husband was on one of his last business trips before the baby was coming.  I had already had 3 c-sections, so we felt pretty confident that we weren’t going to have this baby early.  Overnight I had contractions, and thought it was Braxton Hicks, but decided to call the doctor in the morning anyways.   They asked me to come in, I farmed out my kids to school and various friends, and off I went…driving myself to the hospital.  I was checked, and deemed not in labor, but my doctor and I agreed that I was quite large for having 5 weeks left.  She sent me down the hall for an ultrasound and that is where I found out that my son was very sick.  They told me I was going to have him either that day or the next day, but that I needed to go to a different hospital with a higher level NICU to have him.  They said I couldn’t drive myself, and asked if I wanted a friend to come get me, or to ride in an ambulance.  I chose friend.

I still hadn’t been told what was going on with Avett at this point, aside from that the fluid was very high, and in his chest cavity.  Bilateral pleural effusions.  Fluid in two or more places is also referred to as hydrops.  Avett had hydrops.  Hydrops is often fatal.  Babies that have hydrops are very often stillborn, and of the ones that do make it through their birth, there is still a very long and hard NICU journey.  I got to the delivering hospital, emailing my husband, who was on an airplane, to let him know that something was wrong with the baby, and when he lands to come to the hospital.

He made it in time, we talked to the doctors that would be delivering Avett.  They said usually babies with this need assistance breathing once they’re born, that the fluid might resolve itself, but that often babies in his situation were looking at between 1 and 3 months in the NICU.  MONTHS!

Once I was given my spinal block, things happened within about 2 minutes.  Avett’s heart rate dropped to the 70s, I heard the doctor asking if that was mom or baby, someone said baby, and the doctor apologized to me and then said this was going to be fast.  Less than 60 seconds later, Avett was born, and surrounded by a team of 12 NICU nurses and doctors.  He did not cry.  He had so much fluid in his chest cavity that his heart beat could not be detected…they had to find it in his umbilical cord.  They worked on him for a while and then took him to the actual NICU.  I was put back together, and taken to recovery without my baby.

Avett’s Trip to the NICU

A while later my husband came and said they were still working on him.  This is when it started to sink in how very sick our little guy was.  I remember asking him if they were really busy working on other babies too, and he said “no, just our baby”.  The next thing I remember is 2 different doctors, both NICU doctors, coming to tell us that Avett was on 100% oxygen support, and was not stabilizing or improving. What this meant was that if he got any worse at all, they were already maxed out on what they could do for him.  He was running out of options.  They told us that another hospital, Children’s National in DC (at the time we were living in Virginia), had something called ECMO.  ECMO is short for Extra Corporeal Membrane Oxygenation…it’s life support.  Heart and lung bypass.  It was Avett’s only chance.  They said they wanted to send him to CNMC for ECMO, but that getting him there was not without risk.  He could have a hard time on the helicopter ride.  We decided pretty quickly that this was his only chance and agreed to let them send him.

My recovery nurse, Sandra, was a saint.  I said I had to see him..I hadn’t even seen him up close yet. The doctors said he was way too unstable to come up to where I was in recovery, and since I had had a c-section, they couldn’t get me in a wheelchair yet. My nurse said that if they could make a space for my bed, she’d get me to the NICU.  I was wheeled down, bed and all, and got to hold his hand before he left the hospital.

Avett made the flight, and did struggle, but right when he got to Children’s he was placed on ECMO.  He remained on ECMO for 10 days, and in the NICU for 45 days total.  My saint of a mother came and stayed with my big kids for the entire time that we were back and forth to the hospital with Avett.  We could not have managed without her.

Here are some pictures of Avett when he was in the NICU…initially, I had a vision of what I wanted for his newborn pictures. I had bought cute outfits, and knew that when my baby came home at 6+ weeks old, it was likely he wouldn’t fit those outfits.  I decided within the first few days of Avett’s NICU stay to bring my camera up to the hospital.  Partially because we had no decent pictures of him, and I knew deep down that if he didn’t make it, I would cling to my pictures for memories of my baby…and partially because like it or not, this was his story….this was the story I wanted to document, and this was the story I needed pictures of so that I could tell him about about it later.  My husband didn’t understand why I wanted pictures of any of it…he said he never  wanted to see him like that again.

Because of what we went through with Avett, NICU nurses will forever hold a special place in my heart, as well as NICU doctors, and transport nurses.  He never would have made it without all of these wonderful people.

Once Avett came home from the NICU I decided to volunteer for a non-profit called Preemie Prints.  They gift parents with either hospital sessions, or sessions within the first year of life.  Not every family has the happy ending that we got, and I can’t imagine what I’d have done if the only pictures I had of Avett were the ones the nurse took with our cell phones minutes before they loaded him for the flight.

This is a picture of just the ECMO machine…in addition to this, there was a tower that held the 15 or so medications that Avett was on, as well as the oxygen support machines, the warmer, etc…when I first walked into his room, I broke down.  I hadn’t seen all of the equipment it took to keep my child alive, and was totally unprepared for it…

NICU-ECMO Photos

This is a picture of Avett on ECMO.  The red tubes seen in the pictures are called cannulas.  They went into his jugular vein and carotid artery to supply him with transfused blood.  The machine completely ran him, allowing his heart and lungs to have complete rest.
Another picture of Avett while on ECMO.  He also had 3-4 chest tubes to help drain the fluid that was gathering in his chest cavity.  He was completely sedated, and babies on ECMO often swell or bloat due to the amount of fluids and blood volume required to run the machine.

Still on ECMO here..this was the day he had a pulmonary hemmhorage. I only remember it because his hands were so pale from the amount of blood he lost that he looked like he wasn’t alive.

His feet…my husband hates to have his feet covered up at night..we joked that Avett hated having his feet covered up too!

This is the first time I held my youngest son.  He was 17 days old.  It was amazing and heart wrenching at the same time.

Avett with his “get well gang” that his siblings gave him.  Our older kids were 2.5, 4, and 6 at the time of his birth and had already picked out special stuffed animals to give to him when they met him.  My oldest gave him the puppy pacifier, my 2nd son gave him the white lamb, and my daughter gave him the bear.  These pictures helped the kids to feel involved in Avett’s recovery.

Finally…on no support and ready to leave.   Next step…out the door and on our way home!

NICU babies are near and dear to my heart.  If you know anyone in the Atlanta area in need of a complimentary NICU session, I am happy to help. Contact me to discuss NICU or post NICU photographs.

Today, Avett is a thriving spunky 2 year old and completes our family perfectly.