The Beginning of the End

Our story was tragic and very unexpected.

I had been measuring really, really big during my pregnancy with Freja from about 28 wks. I hadn't been seeing my OB as often as I should've (not that it would have changed the outcome though.) Although we didn't know the gender of our baby, I really truly thought I was "just having a boy," since the pregnancy had been so different than it was with my other two daughters.
I went to see my OB at 36 wks, and she measured me - I was measuring 10 wks ahead. At this point I was SO uncomfortable day and night, I couldn't sleep, couldn't sit, couldn't even stand. I'm only 5'2" and the top of my uterus was very literally up to the top of my sternum, like where your ribs come together in your chest. We joked that maybe the ultrasounds I had at 18 and 20 weeks had been wrong and I was having twins.

I was sent for a fetal assesment test scheduled for March 25th to determine why I was so huge. My OB figured that I was carrying alot of extra fluid.
It was such a long week waiting to go for that test, I thought several times that I was going into labor but was terrified of it happening at home since reading about polyhydramnios and the chance of cord prolapse. We live an hour away from the hospital, btw.

I felt like a horrible mom that week, waiting. I could hardly do anything for my kids I was so uncomfortable. I scared myself with all the info I found regarding polyhydramnios, but comforted myself by thinking that nothing bad would happen to me. Nothing bad would happen to my baby. I had already made it full term, what could possibly go wrong?
Wrong.

We braved a blinding snow storm on our way into the city on March 25th, because I was so determined that I needed this test. I knew deep down that something was not quite right.

We got to the hospital and situated in the ultrasound room, and the tech was blown away by my size. I felt like I was suffocating when I layed on my back for the u/s. She started looking around on the screen, checking out various parts of the baby. We joked about how big I was and I asked her if she was sure there weren't two babies in there. She switched over the u/s to 3-D, and DP and I both were blown away by how much the baby looked like our 19-month-old daughter. I asked the tech if she knew the baby's gender and she said "Of course, I'm too nosey not to look!"
DP and I looked at each other and, after not knowing till this point, agreed that we wanted to know.

"It's a girl," she said. I'll never forget that moment, how happy and blown away I was that I would be the mother of three girls. I thought about how excited the other two would be when they found out they were going to have a little sister. I started teasing DP about being the only male in the house. I knew immediately what her name would be - Freja. I had loved this name for so long, and we would finally be able to use it!

Sometime during all this excitement, things turned serious and I didn't catch on. The tech went to get a doctor, and that's when fear overcame me and I
stopped making sense of everything.

He came in and sat down, and started looking around. His face was stern and he looked concerned. After some time (I can't really say how long, because time seemed like it stood still,) he said "Things aren't good. The baby is very small, around 4 pounds, and shows signs of having a condition called Trisomy 18."

The world came to a screeching halt, I truly discovered what Hell is, and I don't know how things will ever be "Okay" again.

We walked to a room next door and I sobbed. I cried so hard and loud, and shook uncontrollably. I don't really remember too much. The doctor told us what they had seen on the u/s - our baby had clenched fists, clubbed feet, a large hole in her heart, and one kidney was enlarged. I couldn't believe that this baby inside of me, who I felt moving, had so much wrong with her.

He told us that most babies with this condition don't make it to birth, most are miscarried early on in pregnancy, or are stillborn. I remember asking him again and again if she would be born alive. He didn't know.

I was asked if I allow for an amniocentesis to be done to test for Trisomy 18, as I was scheduled to deliver at a smaller hospital that wouldn't have the capability to handle a baby as sick as Freja would be. He also recommended that I have some amniotic fluid drained for comfort. I was very much against this all at first, until I realised that we really needed to find out if Freja did in fact have this condition.

I took a couple of pills to "relax" me but they didn't seem to work, and went and layed back down in the u/s room. I was so terrified of everything going on. The needle, The fact that my baby might not even make it to birth, the inability to process all this information that was being flung at me. I have never felt so helpless and out of control of my life.

I had the most severe case of polyhydramnios that they had ever seen. They removed 6.5 litres of fluid, and there was still a few litres inside of me. They took a sample of fluid for testing and we were told that we would have the results in about a week. I couldn't imagine having to wait a week, knowing that my baby might die inside of me during that time.

I was sent up to L&D for monitoring, and at this point was feeling very sick. I was having alot of pain, and you could actually make out a perfect outline of my baby's body inside of me. It was the weirdest thing ever.

I remember a nurse putting the monitor belt around my stomach. I remember being in pain. I remember not being able to pick up the heart rate very well with the monitor. I flipped from side to side and although I have very little memory of it, at some point I was wheeled into what I now know what was the OR.

There was a crowd of people standing over me, talking. I didn't know what was going on. Chaos. My pants were slid off and somebody was checking to see if I was dialated. My water was broken. I remember frantically asking if I could have her "naturally," without a c-section. Somebody said that's what we were going to try doing. They placed a scalp monitor on Freja's head. I heard her heart beat, and it quickly began to fade away, "beep, beep, beep...... beep...................beep....................... ................................." And a mask came down over my face and I tried saying something, and that was it.
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I awoke briefly after the surgery was complete, but don't remember anything other than watching a nurse push morphine through my IV, and then it all goes fuzzy. I had what I thought for the first two months after her birth was a Classical c-section, as the incision on my skin was vertical, but I later discovered that inside it had been a low-transverse.

I don't remember seeing Freja for the first time, although somebody took a couple of pictures of the three of us before she was transported to the NICU. I have no memory of the rest of the day she was born, and only small bits and pieces of the following day (I don't remember being wheeled down to see her in the NICU for the first time.)

She had to be on a CPAP machine, which blows air continually into the lungs to keep them from collapsing. She did not require added oxygen. It was discovered that she had a blockage in her esophagus, so she could not have a tube feedings via mouth and instead was put on IV fluids and lipids. She had a connection between her stomach and trachea, so she would've aspirated stomach contents into her lungs unless surgery was performed to close the connection. The hole in her heart was not as big as they first thought it was during the u/s, but it was very enlarged and she did have a cardiac ventricular septal defect.

We met with a neonatologist the morning after she was born and he spoke very compassionately to us about the typical outcome of babies with T-18. It is a condition that is deemed "incompatible with life." It was a miracle she was even born alive. My so desperately wanted and loved baby.

Because the typical lifespan of babies born alive with T-18 is generally hours, days, maybe weeks at the most, we didn't want our Freja to suffer more than she had to. We took things one day at a time and let her life unfold.

We met with a Palliative care team daily, and arranged to have a professional photographer come in to do a photo shoot of our family together. We also did footprints/hand prints of all three kids together.

With all these decisions to make, we knew that she would show us the direction that things had to go. We stayed in the city at a Ronald McDonald House near her and my parents took care of our other two children. We lived in that NICU morning, noon, and night. We became very close with alot of the nurses working there, I swear that they are what kept us sane during this experience. Every day I felt guilty and torn about not being able to be with my other two children, especially our 19-month-old. My parents would bring them to the hospital for visits with us, and I felt like a stranger to them, but I knew that Freja needed us more.

We loved our baby fiercely. Hardly a moment went by without one of us (and even some of the nurses!) holding her. I pumped breast milk, dipped q-tips in it, and swabbed her mouth and lips with it and she loved the taste. I longed so desperately to hold her, free of all the wires and tubes, and nurse her. I have never felt so happy in my entire life in those moments, holding my baby who was alive, just being so happy that she was ALIVE! I came to the realization that I had every reason in the world to be happy to my core that she was alive in my arms at that particular moment. I knew that I would have a lifetime of grieving ahead of me, and that I needed to make what ever time we had together the happiest days of my life. How can a mother find such happiness in such tragedy? I'll never know, but it was such a fine line......

I got to bath her in a baby bath tub, I got to change her diapers, I got to dress her in her little sleepers that I had packed for her months before in my hospital bag.

There was so much that happened within the days of Freja's NICU stay. I could write all the details, the good, the bad, just...... everything. It was all so overwhelming.

I never did get to bring my baby home though.

We stayed with her for fifteen days in the NICU before she decided that she couldn't go on any longer. And that was my biggest fear. Babies aren't supposed to die. A mother isn't supposed to have her baby die in her arms. I wasn't supposed to have MY baby die in my arms. I was so fearful that she would be in pain, and so scared of the unknown.

We had been staying in the emergency Parent Room next to the NICU when we got the call around 3 AM. Although she had been SO alert with her eyes wide open and looking at us, Freja had been having very irregular heart rhythm that night which is why we stayed in the Parent Room. I just had a feeling that we needed to be very close by her. We threw on our clothes and flew in to see her. Our nurse told us that her heart rate was very poor, and we just held her.

She layed there on me, wrapped in her little blanket. I can still picture her perfectly. Her adorable, perfect little lips making sucking motions. She opened her eyes a bit. I listened to every breath. They became further and further apart. The nurse put her arm around me and told me that she thought this was the end... Her heart monitor started doing weird things, and it took a while for it to click in that this really, truly was the end of my baby's life. A couple of other nurses came to our area and turned off the monitors. Our nurse took off Freja's CPAP mask and told us to just kiss her and love her. We kissed her, rocked her, my tears streamed down onto her little fuzzy head. She had dark hair like me! I hardly got to see her without her CPAP mask and hat, it was so nice to be able to study her little features.

I'm so sorry.......... this is so long, and all over the place. It just feels good to get it all out.

I......... I just don't know how I'm supposed to go on without her. I came home, and all her things have been sitting here. Waiting for her.

It just feels so wrong.

I miss my baby so much it hurts to breathe........