Birth

"From birth I was cast on you; from my mother's womb you have been my God."

 Psalms 22:10

May 4th, 2012. Sunny Friday. Full house: full of people, gifts,  and hope. All prepared. Some things being fixed in the last minute, but finally all set!

We all went to São Paulo in two cars. The delivery would be at Pro Matre maternity and it was scheduled for 01:00 PM.

Over there everything was already prepared and the delivery room had one huge tempered glass window where family and friends would be able to follow delivery process and join us in welcoming Stella. This time everything came back to memory, deliveries of Beka in Indaiatuba, and Pedro in São Paulo at the same hospital , with the same obstetrician, Dr. Solange Aparecida Monteiro, a very capable professional who became a very close friend to us.

As I am describing, I can feel again the excitement of that day and, honestly, I thought it would be easier to write about it.

We went to the delivery room. Fabio would be called by the team at the right time. Meanwhile, they were talking with me, making me feel more comfortable but the first tears came before Stella arrive.

Anyway, Fabio came in that special way he got, comforting me, gave me a gentle kiss, sat down beside me. Hand in hand we look forward to see the little face of our youngest.

I was worried about the size of her little head, since the ventricles were increased by 19 mm (0.74 in). Ahh my heart was so tight for her.

And she was finally born at 01:51 PM! Strong cry! That little cry we never forget. Born much alike my other kids, weighing 2.740g ( 6.04 lbs) measuring 47cm (18.5 in) . And they brought her to me, that little crying girl and I cried together, for she was a baby just so beautiful! I cried and said: "She's so beautiful, She is so beautiful!" And I was never tired of repeating how much she was beautiful! Like the other two when they were born, her skin was so white, almost pink! Her features so delicate, little eyes still closed, but they were mommy's eyes, as her other siblings. When I first saw her, in that moment when they putted her very close to my face, when she heard my voice and so instantly stopped crying, knowing that only by my voice I could make her feel safe , calm down ... ah! Time stood still at that moment! Nothing else mattered. Nothing was more important than her little face pressed against mine. That peace we felt together that day is engraved in my most precious memories, and I'm sure in her's also . It's exactly the same feeling when Beka and Pedro were born. Some things we will never forget, ever. 

Dr. Solange said we ran out of red ink, because Stella didn't look like a redhead. Her hair was darker. Dad disagreed and said she was surely redhead, and he was right. I just knew it looking at her and seeing how beautiful she was and how my baby was crying loudly. Apgar 9:10! She really stormed her way out!

I was so excited I forgot to breathe in the right way and Dr. sedated me. When I awoke, I was alone in another room with a nurse who would take me to the post-surgical observation room. I should stay there for about 4 hours, start to recover until feeling the movements of my feet and legs again.

I must say that, at least for me, this is the worst part of a c-section procedure, because you're in a room alone a great deal of time, while your greatest desire is to actually SEE your baby, cuddle, feel the smell. The clock doesn't run fast enough while you are in such a room!

Anyway, my feet began to move again and I immediately told the nurse. Actually, my feet wanted to run!

Microphthalmia

The delivery was early afternoon, and taking into consideration the time needed for surgery and post-op, I only went to apartment in the late afternoon. After I arrived, the nurses brought Stellinha to be finally with me. There were also my parents, my sister Tati. Pedro and Beka were also there, and welcomed very well their  little sis. They were all happy with us! It was a celebration!

I remember that I took Stella and her eyes were closed, asleep. I have not noticed anything different. I remember holding that little "bundle" and get admiring her little face. I put her in the crib, it was my third c-section and of course I was in pain.

It was late at night when she woke up and then I saw something different in her little eyes. They did not look alike. The left eye seemed more closed than the right eye. I tried to open it slightly, but I was afraid of hurting her. I thought, "She must compressed the eye in the womb, must be a little irritated, after a while it will open."

My brother-in-law and his wife Laura arrived and I felt so comforted by their presence! Bruno wanted to show me how well she looked and  I asked him to see her little eyes. He, who accompanied the entire pregnancy as doctor and friend, now could see her status. Until then, no hospital doctor had come to tell us anything about it, which left me with the impression that there was nothing to worry about her.

Talks distracted me enough, the presence of Rebekah and Pedro and how they reacted to the arrival of Stella also occupied much of my attention. In one occasion, I noticed when watching again the eyes of Stella, Bruno was more attentive. I went to the crib and I questioned him about it. But he did not give me many details and when I asked if it could be because of some irritation, he agreed with me. I thought quietly: "Tomorrow will be better" and that was it.

On the next day, her little left eye continued the same way. Then I started to really worry about it. Stella was breastfeeding late in the night, but seemed fine. I began to question all doctors who went to the room. I just heard things like " is a little swelling", "Sometimes it is because of the position in the womb" ... nobody answered me what it was and they started to annoy me with those evasive answers....

On the second day at the hospital, already quite angry I asked the presence of a neurologist to assess Stella, and an ophthalmologist. At this point, the air in the room was already quite heavy, I knew there was something else wrong with my daughter but did not know what it was nor the extension of it.

Early in the morning the next day, the nurse took Stella for an ophthalmologic evaluation, and I followed all the procedure through the room monitor TV.

The mood in the room was getting pretty tense. Fabio and I did not know what to expect from results. In a routine visit to our room the pediatrician spoke about Charge Syndrome, or Charge Sequence. We ran to the internet and also asked Bruno's opinion, and he disagreed with that suspicion and later Charge was dismissed.

To save the boys from all the tension, sometimes my parents took them for a walk around town, sometimes while they were in the room, Fabio and I would go around the aisles. How many tears, sighs and hugs those corridors witnessed!

Already in the evening, Dr. Sergio Cavalheiro, pediatric neurosurgeon, came to me after evaluating my daughter. In short, spoke about the ACC and how it might or might not affect her life and gave me his card, to give continuity to our treatment with him. He said that at first she would need to make a Magnetic Resonance Imaging (MRI) to make sure liquid inside her brain was not increasing in volume to the point of increase pressure on the brain.

After the neuroped's visit, Fabio had to return home to take the kids to sleep. The day for them at the hospital was quite tiring, there wasn't many activities around for them. Now I was looking forward to the visit of ophthalmologist, but he was taking forever to give us a heads up. When the nurse came into the room to fetch Stella bathing, I asked her if Dr. would not talk to me, after all, the day had passed without him giving me feedback on the evaluation of my little baby. And that gentle nurse, always very caring, was willing to talk with him about it. My mother was with me, she slept with me in the hospital every day, while Fabio slept with children at home, that was the way we found  for them not to feel somewhat misplaced.

As I advance in writing, I need to pause and breathe, because it is not easy to remember it all over again...

Anyway, enter the room a serious man, tall and thin, with dark hair, sad eyes, crestfallen. He introduced himself as our responsible ophthalmologist. My mother was sitting on the couch, which was next to my bed. He in front of me, a slender figure. I remember thinking that I would remain strong, no matter what he said, I didn't want to cry. My heart was hopeful, but it did not last long. With a quiet voice he told me... there was not much to talk about: Stella had serious problems in her little eyes, she would not see well and probably would see nothing at all. The left eye presented besides microphthalmia, retinal detachment and the optic nerve was malformed. The right eye was also affected in the optic nerve. He spoke some technical terms. I did not understand anything. I held back tears as I could. But then they escaped. My strength faded. He left the room without even giving me his card. My pain was like a needle in my heart, aching more with each pulsation.

My mother tried to say something, I interrupted and asked her for that moment just let me cry. And she cried with me. 

As I remember, tears come all over again...

I got out of bed, went to the bathroom to wash my face. While in there, I tried to start a prayer. But words would not come. I could not form  even a sentence. I could not ask for anything, I could not think anything, say anything. I was numb with an overwhelming feeling of emptiness.

I went back to my bed and cried. I wept copiously, cried painfully, pain ripped, a torn in my chest, pain that I had never imagined existed. While the thoughts in my head were trampled, I ask my mother between sobs: "So I'll never be able to take my daughter to a zoo, because she will not even get to see the giraffe?", "She will not be able to see the setting of the sun, the beautiful things God has created?","She will not be able to see herself in the mirror?"',"She will not be able to see me, will not look me in the eyes?"

I knew her left little eye was smaller, but in my ignorance and perhaps insistent hope, I really thought she would see normally. It was only minor, just a cosmetic concern, but she could see, because it was functional. Not even crossed my mind it could be something that would harm either! And the right eye was of normal size, so for me it was completely perfect.

Aaaahh!! It was a blow too hard to endure!

You start thinking that somehow you are to blame for all that, after all, she was inside me. I was the one who carried her during pregnancy, I thought I should have done something that would have harmed her that way.You feel small and helpless, and all that preparation I thought I had now is useless.

I wondered: "How could I have raised a child with so many problems, and such serious problems, if I had already generated two completely normal?", "What I should have done or failed to do to prevent all this?" "At what moment did it happened inside of me? What did I do?" It's maddening! It's devastating! From the first time that something wrong had been seen back there in my pregnancy, so far, indeed, this was the worst thing I experienced. It was the most painful of all pain. I felt nothing. Crushed. Shattered. Impotent. Hopeless.

A breath of life: When He came to me

After departure of the ophthalmologist, it was time for the geneticist. When she saw me crying, she asked what was happening. I said that everyone who came into my room was just to give me bad news.

She sat in front of me, notoriously compassionate, and calmly talked with me about Stella's case from a genetic standpoint.

Stella would make a karyotype test, even though she already had one when still in my belly, but Dr. thought it would be better to repeat the exam. She spoke about some possible syndromes, including Aicardi. But they were only assumptions and we have many missing pieces in this puzzle. To begin with, she was already very happy because Stellinha was suckling very well. Glory be to our God!

When she left the room, my mother and I were talking about everything. I called Fabio, who had  just arrived home and realized that he was quite shaken. Like me, he also had many hopes and expectations, and when those are lost we lose ground.

After a quite long time, that nurse who had come to fetch Stella bath returned, and she was bringing my little clean-pleasant-smelly baby,  so beautiful! She asked if the ophthalmologist had come to see me, I said yes and asked: "Did you know what he said?" She replied negatively and then I started to tell her about Stella's diagnosis.

I remember that figure standing in front of the door, white uniform, ready to leave the room, listening to me intently. When I finished talking, lying on my bed, she kept looking at me firmly and said with authority and slowly: "This is the word of man, but the final Word does not come from men, the final Word comes from God. And if you believe, and pray, and trust, the Lord will change the history of Stellinha. He is the Lord of life. "She asked: "Do you believe? Because I believe!"

Oh, God ... When I could no longer hear the gentle voice of the Lord while my pain screamed, when I could no longer bend my knees and pray to my God, when I felt alone, helpless, when I lost my ground, when God seemed so, so far I could not reach, or when I could no longer look him in the midst of all this torment, He then came into my room like in a very deep personal way, and spoke to me.

That night, His Glory and His presence filled my room. His care and zeal became evident to me: "See? Understand? You're not alone. You are not alone. I'm here. I see you. You could no longer hear my voice, you could not remember everything I always told you. I teach you so long about me, but today you did not remember who I AM, so I came here to make you hear my voice. I came so you know I am guiding all this, I am the Lord of your story. I came tonight so you never forget it. Do not be afraid."

And the guilt was gone, I understood at that moment that nothing depended on me. There was a purpose. There was my Lord commanding nearly every detail. And whatever it was, hurting like it hurt, He was with me and nothing deviated from his plans, because none of His plans are thwarted. God makes no mistakes. Hallelujah! This is the God whom I serve. A God so close to us!

"All this I have spoken while still with you.

But the Advocate, the Holy Spirit, whom the Father will send in my name, will teach you all things and will remind you of everything I have said to you.

Peace I leave with you; my peace I give you. I do not give to you as the world gives. Do not let your hearts be troubled and do not be afraid." 

John 14:25-27