Saturday, May 8, 2010

Day 1

Getting ready in anticipation of the arrival of our beautiful baby girl. At this stage, everything was still fine..... let me take you back a few months....
At 17 weeks, during a routine ultra sound, we picked up that the baby has CPC's on her brain. The gynae was concerned, as it was a soft marker for Trisomy 18. As a precautionary measure, she sent us to a fetal specialist for him to check for any other markers. It was a gruelling 4-5 week wait for that appointment. I cannot begin to tell you the anguish I felt. I researched Trisomy 18. Here are some of the characteristics of Trisomy 18 babies:
  • Heart defects:
    • VSD (Ventricular Septal Defect): a hole between the lower chambers
    • ASD (Atrial Septal Defect): a hole between the upper chambers
    • Coarctation of the aorta: a narrowing of the exit vessel from the heart
  • Kidney problems
  • Part of the intestinal tract is outside the stomach (omphalocele)
  • The esophagus doesn’t connect to the stomach (esophageal artesia)
  • Excess amniotic fluid (polyhydramnios)
  • Clenched hands
  • Pocket of fluid on the brain (choroid plexus cysts)
  • Rocker bottom feet
  • Delayed growth
  • Small jaw (mycrognathia)
  • Small head (microcephaly)
  • Low-set ears
  • Strawberry-shaped head
  • Severe developmental delays
  • Umbilical or inguinal hernia
Saying I was scared is the understatement of the year!

In early January we went to the fetal specialist, and he did a very long, involved ultra sound. He looked at everything- her hands, her feet, her heart, her organs. The prognosis was good. He sent us away telling us that he felt no need for an amniocentesis. The only other marker he found, was a small defect in the pipe between the urethra and the kidney (I think), which was curved slightly more than normal, but he felt that this didn't increase our risk for a Trisomy 18 baby, and was something he would simply look at again when she was around 6
weeks old- and if it hadn't repaired itself, it would mean a minor operation to fix it. We were thrilled!! And so we prepared ourselves to meet our perfect baby girl.

Her growth from then on went well, up until around 34 weeks, when she started slowing down in growth. But the gynae wasn't worried. She felt that our baby was simply a small baby, and that the fetal specialist had given us the all clear for a healthy baby.

And so, on Saturday morning, the 08th of May 2010, we checked into hospital to deliver our precious baby girl via C-section.
10h50
Saturday 08 May 2010

Meet Mikayla
Weighing 2.52 kgs
46.5 cm long
And beautiful

Right up until they pulled her out, I was still praying for my perfect baby girl. Silent prayers of hope. But the hush in the room when they pulled her out was pulpable. The stolen glances were not quick enough. The concern too obvious. I found out later that they took 3 minutes to get her to breath on her own. When they whisked her away, I sent Russ with, but no-one would tell me what was going on. They wheeled me to recovery, and still no-one would say what was going on. Then I was transferred to my room- and still nothing from anyone- just sad faces!

After 40 harrowing minutes, the paed and Russ came into my room. The look on their faces said it all. When the paed said that they suspected my beautiful baby girl had Trisomy 18... well, I cannot begin to tell you the pain that I felt. It was primal. It was strange aswell, because everyone kept referring to her as the baby, until I said that her name is Mikayla. She has a name. My daughter has a name. And so it was. Baby Mikayla van Rensburg had entered into our lives to forever change us.

Eventually in the evening, they wheeled me, in my bed, to see Mikayla and hold her. There was my precious little girl, with pipes and wires all over her. And she was BEAUTIFUL. I am so madly in love with her. Mikayla... you are perfect. Beautiful. Our little princess.

The rest of the day is a blur. Tossed between complete grief and utter despair, to absolute joy over my beautiful girl. The only emotion I have not felt today, is anger. I have no doubt it will come, but I just want to be able to love my little girl, as any mother would. I don't care that she is different. She is still my baby. And I love her.

"Dear precious Mikayla
,

I love the softnes of your skin. It's like velvet on my fingertips, and like heaven on my lips.

You have come into our lives, and I keep hoping, wishing, desperately praying that you would stay. That I'd get to hear you talk, laugh, cry.

You are my daughter! My daughter! My daughter! I love you so very much.

Please stay!

God... I don't know how to talk to You. I know we live in a fallen world. And you may not have caused this. I'm not sure if I am even angry that You didn't intervene and make Mikayla ok. I don't even think that I am angry at You at all - or angry at anyone for that matter.

I am just so terribly confused why you promised me a daughter... why take her away then? And I am hurt and sad. And desperate to take away Miks pain - her abnormalities, and make her whole here on earth.

And I am frustrated I don't have answers - that we're not really sure whats wrong.

HELP.

Help me understand. Why.

Mik - I LOVE YOU"

No comments:

Post a Comment