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
That was such a beatiful post and so true! I am so glad your little Victoria is doing so well...that is such an amazing gift that I know you are sp thankful for!
ReplyDeletewow, I love this post! I really needed to hear that this morning. Vitoria's name fits her so perfectly. You are amazing parents. Obviously God thought so if He gave you Vitoria. Thank you for sharing these truths with us today...the Spirit of God shines through you.
ReplyDeletelove, Stacy & baby Rachel
Victoria, you are a great girl! So lucky to have mom & dad that loving you very much... God will always bless you and your parents!!!
ReplyDeletePraise GOD!
Joana,
ReplyDeleteAnother beautiful and faithful posting. I'm printing off the following as a reminder for a trial I'm facing:
"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. "
God bless you and your family,
Robb S
you are a wonderfull family I wish you alle the best
ReplyDeleteshe truly is a beatiful girl I live too see her grow and be happy . you are such loving parents . bless you all
why do you think it is that God answered your prayers but lets other babies die?
ReplyDeleteI believe that when we have a relationship with God, we trust that He will do the best for ourselves and our loved ones, and will answer our prayers when possible and better for us. Vitória was able to live two years and a half outside the womb with stability and quality of life. I believe she died when she was 2 ½ years because it was her time. Maybe some babies don't survive longer because they might not have quality of life in survival. But I don't think it is better or worse to live or die, I believe that now she is better with God. I just prayed what was the desire of my heart and trusted when God took her, even that my desire and prayer was that she could live more. I chose to be grateful for the time she could stay and not question why she couldn't stay longer, and my heart found peace this way.
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