Sharing a blog and a dream

I´d like to share here The Story of Baby Faith Hope Blog where Myah, Faith Hope´s mom, shares a dream about a non-profit book that would show the world our real-life stories and photographs of our anencephalic babies, so that people could change their view of anencephaly.

It would be so so special.

Please visist her blog and if you think you can help, you can contact her.

Trying to crawl at 10 months

It is not easy but she´s trying hard!

Light, noise and mathematic

Be my strong Rock, the strong place of my salvation; for you are my Rock, and my safe place.

 

For you are my hope, O Lord God; I have had faith in you from the time when I was young.

You have been my support from the day of my birth; you took me out of my mother's body; my praise will be ever of you.

 

But I will go on ever hoping, and increasing in all your praise. My mouth will make clear your righteousness and your salvation all the day; for they are more than may be measured. I will give news of the great acts of the Lord God; my words will be of your righteousness, and of yours only.

You, who have sent great and bitter troubles on me, will give me life again, lifting me up from the deep waters of the underworld. You will make me greater than before, and give me comfort on every side. Psalm 71

 

Dear friends,

Last weeks were so intensive and tiresome. Many things happened but we weren´t able to stop and write about them. Our precious Vitoria has gone to many appointments and has been very busy. She had to change her boot on right foot every week, she has physiotherapy three times a week, and we have to take her to pediatrician, neuropediatrician, ophthalmologist, otorhinolaryngologist... uncountable doctors to offer her the appropriate following she needs for her development.

The treatment with the plaster boot has finished! Now she´s using a special removable pair of boots called Dennis Brown (don´t ask me why it has this name!). Now it´s much easier to give her a bath, because we don´t need to wrap her leg with plastic bags to protect from water.
She´s a beautiful little girl using shoes! The treatment of her foot is important not only for esthetical reason, but for her physical development. At physiotherapy she´s having so many improvements. She´s stronger and having many progresses in her attempt to crawl. She still  needs more strength on arms and the right leg, in which she was using the boot, is weaker, thiner and a bit trembling. Even that, she can move it much better than before the treatment.

By the way, the treatment was very painful...
Every time she had the boot changed, she spent three days crying and complaining, she didn´t want to eat or sleep. I couldn´t also sleep or eat well, trying to comfort her and trying to make she eat something. We had to put her in our bed at night so she could sleep a little - and so could we!
Her pain is our pain, so we had to be patient and lovely with her, so that she could feel protected and loved during these hard days.

There is some brain working here...

Finally we could find a good neuropediatrician last month. She listened us, read carefully all her exams, asked us many questions and, after all, she examined Vitoria. She talked with her lovely and laid her down with face down to bed. After a moment, Vitoria lifted her head up and started moving arms and legs. She was great and showed her will to live and overcome herself.

So the doctor finally gave her opinion: There´s some brain working here. By the images in her exams, it seems to be very immature. But with time and stimulus, this brain can rearrange itself and have some development. We´ll try to teach her things from outside to inside. All stimulus you´re giving her is very important. You can stimulate her with too much light and noise.

Last month Vitoria also had an urinary infection - we found a bacteria in her urine during some routine exams. It wasn´t serious, it was an opportunist bacteria and her pediatrician prescribed ten days of antibiotic to combat it. We repeated exams and everything is ok now.

Medicine or mathemathic?

We also took Vitoria to an ophtalmologist. Still at hospital, an exam showed she had hypoplasia of both optical nerves, what means they are malformed. But they don´t know exactly if she has or not some visual perception or what is the prognostics for her sight. The first ophtalmologist we went was very respectful and kind. He got impressed with Vitoria reactions and encouraged me.

He told that, in medicine, 1 + 1 isn´t always 2. We need to repeat exams during her development because things can change. I can´t tell you she will never have any visual perception. It will be a pleasure for me accompanying her.

Always when we go outside with her she lift her head up and open her eyes, and keep moving her eyes from one side to another, as if she could see something. That´s why we believe she can perceive luminosity.

We took her to a second ophtalmologist to examine her retina. He told me that, ´in medicine, not always 2 + 2 is 4. We want it to be 4, but sometimes it is 3´. Well, all this mathematic lesson is to explain our sight is formed at our brain. And brain is an extremely plastic organ. A part can assume the function of other when it is damaged, and it happens very often with children - this is the famous neuroplasticity. By the moment, the prognostic for her sight is bad. But when we remember the prognostic for her life was worst, and she is alive with us, we remember nothing is impossible. We don´t have any control and can do nothing to help her to see. Only God can do it if He wants. We only can pray and believe.

After so many accounts, this is the result: her eyes are good, but we need a miracle in her brain. For now, we were advised to look for a neuro-ophtalmologist to receive a better opinion.
We continued our marathon going to an excellent otorhinolaryngologist. She was very interested for Vitoria and she asked me many questions. She also asked a new hearing exam and a tomography.

At hospital, a hearing exam showed Vitoria can hear a little, but not 100%, and they don´t know how she understands sounds. Doctor told we need to repeat this exam because results can change while she grows up. A tomography showed she has many alte­ra­tions in bones of her face, such stenosis in nasal and hearing bones, and we also need to investigate it. So Vitoria will use a hearing prosthesis to offer more stimulus and consequently help in brain development - we don´t know how much she will answer to this stimulus, but we will do all we can for her.

Change in speech

Some sentences we have heard lot of times recently are ´we don´t know, we can not foresee what will happen, this can change, we need to observe, it´s too early to say something conclusive...´ so different sentences from what we used to hear during pre-natal exams, when doctors were so full of certainties, saying she would die right after birth and that things would never change, that it would be much better terminate pregnancy...

It is very good to hear from so excellent doctors that they are not God and they don´t know everything. God´s creation is beautiful and amazing and there are mysteries only He can explain. And sometimes He surprises us to show He is God, He created us, He knows us more than ourselves. And when it is in His purposes, He can make the impossible turns possible.

Our beloved victorious girl has a delay in development, something that could be waited. Of course this will never change 1 cm of our love for her. Actually, I see things from a different point of view. She is a child that was expected to live a few minutes or hours after be born. And she is 11 months old. This doesn´t seem a delay to me. I think she is so smart and intelligent. Children live and develop with a whole and perfect brain. Vitoria is developing with a small piece of malformed brain that was preserved by miracle (since doctors don´t know how to explain it, I think this is a good answer). Her beautiful face has many malformed bones. And despite of that, she can breathe very well and, to show God´s mercy, she´s so pretty!

We pray and believe our Father in Heaven can change any sentence and any diagnostic. But we also trust in His perfect plans for Vitoria´s life. We totally respect God´s time and Vitoria´s time. Her rhythm and her limits. But we have decided only she can show us what are her limits. We won´t put limits to her before give her the opportunity to fight. And we won´t take from God the opportunity to show His power. That´s why she´s alive. And fills our hearts with so much joy.

Precious promises

And in the same way the Spirit is a help to our feeble hearts: for we are not able to make prayer to God in the right way; but the Spirit puts our desires into words which are not in our power to say; Romans 8:26

Little sheep Vitoria one month old

I didn´t know that there are twelve promises from God on psalm 23. Until I was pregnant of Vitoria and a very special friend prepared a plan of praying for us.

It was last year, about this time of the year. I was on seventh month of pregnancy. She was growing and moving a lot. It was my first pregnancy. Everything was new and exciting. I felt so beautiful with my big belly and proud about our first baby girl. I had decided I would be happy and enjoy that pregnancy at most, even knowing about her condition. I would love my baby and I would trust in God´s unfailing love. But it wasn´t easy to do that.

As we were getting closer to the due date, anxiety and fear started to come too. While she was in my womb, she was protected. What would happen after her birth? I knew she would probably die, despite of our prayers for the miracle of her healing. But I also knew there was a distant possibility of survival. I had read about a baby with anencephaly in Brazil that had lived for 20 months a few years ago, and also about a baby with partial acrania that lived for 3 years and a half – after an attempt of abortion on seventh month of pregnancy. But, would I be capable to care of a baby with a so serious malformation? Would I be happy being mother of a child like that? What should I ask to God? I didn´t know what to want. I didn´t know what to pray anymore. I only asked God to teach me to be His sheep. I asked for help, so that God could show His presence during that time.

So a friend appeared with a very special gift. She prepared a plan of praying. She shared seven psalms and asked to some friends at church to pray for us. I was so grateful that people would stop and pray for me, for Marcelo and Vitoria every day, during seven weeks. Those were amazing days. I could see God´s presence all the time, helping me to deal with my fears, healing my anxiety about the future. During C-section, I was very nervous. The only thing I could think is that God would do the best for Vitoria and for us. And when she was born, I felt an indescribable peace, I had never felt. I could see her malformation and I understood only God could decide about her future. I thought she would die soon. It wasn´t easy, but I was in peace. I was happy to carry her in my arms with life. She was so precious. She was much more than I ever would be able to dream for a daughter.

I´d like to share with you the first psalm this friend gave me, with twelve precious promises, and I hope they can be a very special gift for everyone who reads this blog, as they were for me. Actually, this is a present from God for all His sheeps.

Promise of provision: The Lord takes care of me as his sheep; I will not be without any good thing.

Promise of resting: He makes a resting-place for me in the green fields.

Promise of Direction: He is my guide by the quiet waters.

Promise of sanctification: He gives new life to my soul: he is my guide in the ways of righteousness because of his name.

Promise of courage: Yes, though I go through the valley of deep shade, I will have no fear of evil;

Promise of His presence: for you are with me...

Promise of comfort: ...your rod and your support are my comfort.

Promise of honor: You make ready a table for me in front of my haters;

Promise of unction: you put oil on my head;

Promise of Joy: my cup is overflowing...

Promise of Care: Truly, blessing and mercy will be with me all the days of my life;

Promise of future: …and I will have a place in the house of the Lord all my days.

"Little sheep" Vitoria today

Ten months flourishing in God's house

Set your minds on things above, not on earthly things. Colossians 3:2

For the rest, my brothers, whatever things are true, whatever things have honour, whatever things are upright, whatever things are holy, whatever things are beautiful, whatever things are of value, if there is any virtue and if there is any praise, give thought to these things. Philippians 4:8

Let not your heart be troubled: have faith in God and have faith in me. In my Father's house are rooms enough; if it was not so, would I have said that I am going to make ready a place for you? And if I go and make ready a place for you, I will come back again and will take you to be with me, so that you may be where I am. John 14:1-3

If in this life only we have hope in Christ, we are of all men most unhappy. But now Christ has truly come back from the dead, the first-fruits of those who are sleeping. I Corinthians 15:19-20

So is it with the coming back from the dead. It is planted in death; it comes again in life:

It is planted in shame; it comes again in glory: feeble when it is planted, it comes again in power. I Corinthians 15:42-43

 

Sometimes all we need is to look up. Maybe where you are now does not seem very exciting. We are not always at a park with beautiful trees on a sunny blue-skied day. There will not always be birds chirping merrily over our heads, bringing more music and color to our days. Sometimes what we see will be the gray smoke of cars. The opaque cover and heavy pollution of the city. The old paint peeling from the ceiling of the house. Patches of mold caused by humidity. Buildings covering dramatically our view of the sky. But still, I insist: looking up can change everything. Completely. When we can see beyond appearances.

Jesus taught us to look up. He taught us to think big. Literally. He once said he would prepare a place for us to greet us in heaven. This reminds me of some crucial facts that we lived with Victoria in the hospital. In the most difficult challenges she has faced, we always used to say that she was going through all that to be able to go home. And that at home everything would be better.

It was very difficult to make the decision about the surgery. We knew she would suffer. We knew that she would face risks. It would be so painful and difficult, that maybe she would not make it. But it was her chance to be able to get better and go home. Her chance to live a true life at home with her parents, and not stuck inside a hospital. I learned some things from God. I was learning at first hand the value of suffering. God was allowing difficult and painful moments to transform us. So we as parents also needed to allow her to suffer a surgical intervention in order to get well and go home

When Vitoria went into surgery, it was like I was sending my heart to the operating room. I decided to sleep the previous night at the hospital. I lay on a stretcher in the mothers' room. A pillow and a blanket brought a little comfort for a few hours. I got up around 2:30 am to see how she was doing. And there was just a nurse in the room, at half light. She had been fasting, receiving serum, and therefore I avoided to wake her up, so she would not feel hungry. I explained to her why she was not getting food. I gently touched her face and said I loved her. I slept a little longer there by 3:15 a.m. and returned at 5:30, when I could give her a bath before surgery. After that, I took her in my arms until the time came for her to leave. She slept peacefully. It was cold and I could warm her up next to my body, wrapped in a warm and soft blanket. I loved her so much. That little girl so tiny, so pure and lovely. I did not want her to suffer. As I wanted to spare her any pain, any suffering. But she was born with a serious problem. Her brain was exposed and it was an easy target for infection, despite all the rigorous hygiene care and the dressings on her head. We had to fix this problem. For her sake.

I explained to her what would happen. You will go through a surgery. The doctor will move up your skin and will close your head. It'll be a little difficult. But we pray that Jesus be with you all the time. It will be OK and you'll soon be back, and when you stay well, we'll take you home. I'll be here waiting.
 

At half past seven the team arrived. We come seeking Joana de Souza's newborn for surgery. She was always called like that. Joana de Souza´s NB. Once born, she received a bracelet with my name. Her birthroom and all her belongings had my name. Although she was not at home with us, she was our daughter. Everything about her indicated it.

I put her down on her bed, and then they took her. My mother was with me and we were accompanying the team to the elevator. She was quiet, calm with the pacifier in her mouth and her hands stretched up. I could still feel her warm little body snuggled against my chest. I'll be here waiting for you, my love. Come back to us.

Once the elevator doors closed, there came my tears. Some fast sobs, but now it's time to breathe, pray and trust God. The following hours were spent in a lot of apprehension. I was very nervous and aware of the great risks she was facing. Every moment we prayed. Lord, Vitoria is in surgery right now. We do not have any control over what is happening. We have no control over her life. But you Lord do. Please sustain her life. Keep her heart beating strong and steady all the time. Protect her from all evil. May Your hands hold the hands of the doctors while they do this surgery. In Jesus' name, amen.

My mom was with me all the time. Marcelo arrived soon as well. That afternoon he had an important job interview. He had been unemployed for eight months and that would be a very important day. Two dear friends came to see us: Angela Leite and Elaine Cedotti. Amid the talk, we prayed. By early afternoon my mother-in-law also arrived. Everyone was tense and apprehensive.

We cried with joy and hugged each other after we received the news that the surgery had ended successfully and Vitoria would soon be brought back to the NICU. I was exhausted. I had been unable to eat anything and had stomach pains. My head began to ache and I felt weak. But at that moment I knew that God heard our prayers and was giving us Vitoria's life. We would take her home.

Once she returned, I went to see her. They had done a wonderful job. The doctor warned us that soon her face would begin to swell, as they had lifted off the skin around her eyes and neck, then stretched the skin and sewn it together to cover her head. She was beginning to wake up. There were numerous wires attached to her body for several controls. She was cold, and her crib had the heater on.

Finally I got to eat, and then went home to sleep.

The days that followed were the most difficult ones of our lives. The next day, it was shocking to see her. Her pretty face was swollen and huge. Her beautiful eyes were so swollen that she could not open them - they looked like two huge ping-pong balls. She could not cry because she was intubated. She was suffering, I could see in her face. She looked very uncomfortable. She was fasting and the tube made her nauseous. Her heart was beating weaker. Dr. Silvia, the pediatrician who accompanied her, prescribed a sedative for pain.
If we touched her, she would wake up scared, get nervous, and start to struggle. She could not open her swollen eyes, but we saw she was awake. We had to calm her until she slept. So I was afraid to touch her not to wake her, and all I could say was, all is well, soon you will feel better, you'll be well and we'll take you home. Sometimes I just touched her little hand, holding the tips of her fingers and said everything was fine, she would get better. Her music player played soft and cheerful songs, so she would feel comfortable and know we were close by.

The next day her neck swelled up too and there was almost no separation between her head and body. Her eyes were incredibly swollen. The surgeon removed the bandage on top of her stitches, and above her head there was a large dark wound, full of crusts, which was bleeding and seemed to hurt. Oh, my God, was it the best option to do this surgery? She is suffering. I do not want that. It hurts to see her suffer. It hurts, my God. Please restore her, I beseech you, I implore you, save her life, please.

Hold on, my love. Be strong. Courage. Soon Mom and Dad will take you home. Now just be quiet, rest; everything will be alright. You will improve. It's okay, honey.

On the third day, she got worse. Her heartbeat went down and did not return to the ideal rhythm. She convulsed. In the afternoon, she did not pee and her blood pressure was low. They found that there was a blockage in her lung. I was desperate. The situation was delicate, though not extremely serious. But for me it was unbearable. At some moments it seemed that I could not stand being there anymore. But when I approached her, I said: Soon you will get better, Mommy will take you home. It'll be okay, honey.

You're already much better, my love. Congratulations. You see how good God is? Soon you will be fine and we'll take you home.

Today, Vitoria is at home with us. During the time she lived at the hospital, we always went to see her. She was not here, but our presence in the hospital with her made her feel at home. The time at the hospital was necessary. It was a long time in treatment and preparation. But it was temporary. It was not her house and it did not make sense to make plans for there. That was the world she knew, but it was so limited. So small. A much better life was awaiting for her. Her true home was prepared to receive her.

We also have a true home. We have a father who comes to see us every day and tells us to hang in there, my son, everything is fine, one day I'll take you home. I know you can be with a little pain, but it will soon pass. I am here with you. I'll never leave you.

 

I think this world we live in is like Victoria' NICU. There will come a time when we need to undergo surgery. It will be so difficult that we may not endure it. But it is necessary. Not because God wants to but because we need it. He suffers with us. He is preparing a better place for us. But while we're here, He is with us. And we have a label that indicates that we are his children, like Victoria wore the bracelet with my name. This seal is Jesus' blood. And even if we're not with Him in heaven, His presence makes us feel like we are there. If we look up high and walk in his presence, and allow Him to work His work in us, we will be blooming in the house of God, regardless of the chaos around us. This life is very limited and incomplete close to what Jesus is preparing for us. That does not mean it is not important. But we must look to the right place. We have to put our eyes on what does not perish. One day Jesus will take us home. We believe this with all our hearta.

We thank God because on November 13 our precious daughter completed ten months of life outside the womb. Thank you, Lord! For ten months we are flourishing in the house of God.
Flourishing because we trust that He loves us so much even when He allows us to suffer. Even situations that seem so adverse and bad for us have a purpose of love. So we are blooming along with Vitoria. Not because our life is an eternal spring where everything is beautiful and works. But because our hearts are guarded with God in his presence, and He sustains us. And because we allow Him to do His work in us, his risky surgery, we feel pain and discomfort at times. But the pain is gone and we recovered. And we know that the flowers are just the beginning. The fruits are yet to come.

Ten months of Vitoria. Ten months of overcoming suffering, now to be home with us. Ten months of unconditional love, through tears and hope. God can transform the biggest pain in full joy. Ten months seeing that no suffering is in vain when we love. And the rewards always come. Some in this life. Others in eternity. But they surely come. Thank you for these ten months of life flourishing in the house of God.

This is what the Lord has said: Cursed is the man who puts his faith in man, and makes flesh his arm, and whose heart is turned away from the Lord. For he will be like the brushwood in the upland, and will not see when good comes; but his living-place will be in the dry places in the waste land, in a salt and unpeopled land. A blessing is on the man who puts his faith in the Lord, and whose hope the Lord is.For he will be like a tree planted by the waters, pushing out its roots by the stream; he will have no fear when the heat comes, but his leaf will be green; in a dry year he will have no care, and will go on giving fruit. Jeremiah 17:5-8

Grandma Alice´s visit

 Two weeks ago grandma Alice spent some days with us (my mother lives in other state, Rio Grande do Sul, so she can´t visit us very often)

 

It was an amazing time

 

She helped mommy to take care of Vitoria

 

These days were so intensive: she learnt how to give her milk in the bottle

to give her lunch - it´s not always an easy task

"help me, I don´t want to eat this thing!"

But with love and patience

 

 

she eats everything!

to get strong and grow up

and after that, take a nap in grandma´s arms

We went out for a stroll in a very beautiful morning

Grandma gave Vitoria a bath (she´s so heavy, with 7 kg / 19 pounds!)

 

 

we played

We had very special days

I´m missing grandma...

Thank you for your visit and for taking care of me. I love you so much, grandma!