14 December 2013

a little fighter's 2013

July was a tearful start. 
August went with no time to cry.
September was tumble. 
October was another tumble. 
November we tried to pick up ourselves. 
December we’re looking back and blessing for how far we came.


“I’m afraid your daughter cannot see.”

Doctor told us when she was three day old. It was the day I got discharged from the hospital. I could hardly move with pain from emergency cesarean, let alone holding and feeding my baby. Nevertheless it was a huge relief coming home after exhausting three nights of being unable to feed her properly despite frequent midwives advice, feeling completely alone, intimidated and hopeless. At the same time there was numbness all over me, blended with confusion, denial, despair and sadness I have never experienced before.

During my early pregnancy, the fetal test had picked up an abnormality. Later on we were told that our baby has a heart defect, which might require surgery soon after she was born. Although they seemed to be quite confident in fixing this problem as it is not that uncommon, it was obviously difficult for us to accept. Worry and uncertainty carried on but we just hoped that the rest would go well. So when the ‘eye thing’ came up on the top of that, everything seemed to fall down for us. We were devastated. 

Both her eyes looked cloudy because of opaqueness on her cornea. She was diagnosed Peter’s Anomaly. This condition can occur randomly to anyone, but it is very rare, something like 2-3 cases in 10,000. How unfortunate. It cannot be cured or corrected by glasses. She will not have normal sight. The only way to give a chance of sight was a cornea transplant, which carries a very high risk for a baby because of the likelihood of rejection. Her eyes were also suffering from high pressure. She immediately started eye drops to reduce this and prevent further damage, which could lose her eye altogether. The more we learn about the condition of her eyes, the more indescribably painful it was. And this was only the beginning of our long journey. 

She was soon referred to Manchester Royal Eye Hospital. On our first visit, the consultant explained to us many things; her eye condition, how baby’s eye and brain connection develops, operations, risks and so on. He told us to prepare that it is going to be a long shot with something like 80 appointments a year to come. It was overwhelming. Ironically I work with people with visually impaired and am trained to support them, however, I was far more ignorant. I did not know how the brain connection develops and when it develops. Brain connection for baby’s eyes peak at 8-10 weeks. She was already coming to three weeks. Time was already ticking. If going for a cornea transplant, the risk of rejection for a baby is 50% or more. But without doing anything, she will only have light perception, for the rest of her life she would live in the darkness. We opted for taking this fighting chance to give her best potential. 

Hospital visits have been almost every week, sometimes twice a week. It is four hour journey from us. We usually set off 5 or 6am to beat motor way traffic. We often stopped on our way home to feed her and administer medication here and there, which made a single appointment almost all day. She also had other appointments for heart, pediatric, generic, vision support team and you name it. The calendar was full almost every day. In between, I tried to establish breastfeeding routine, which had often gone out of window. Also trying to give her as much visual stimuli as possible to encourage brain development. It was just so busy busy busy. I felt always exhausted. But we just did what we had to do, no other way about it. It must have been hard for a little baby to cope with this madness, too.  

first operation at 11 weeks
Actual cornea transplant took place when she was 11 weeks old. After 5 hours of waiting, she came out of theatre with a patch on her left eye. Weak crying, still fragile from general anesthetic, she could not suck on my breast despite having had nothing for the last 9 hours. I held her with a relief and desperate hope of success. Follow up of the surgery was intense. She had to have six different eye drops all day long to prevent infection, inflammation and mostly rejection of graft. Each time taking those tapes and eye shields off, she cried with eyes tightly shut, shook her head or woke up from her sleep. Yet we had to be very careful not to force open her eye to keep the graft safe. Simple eye drops became a big challenge and disruption. One of her eye drops was to be administered every single hour! We certainly had a sleepless week to start with. That was supposed to tail off gradually but before you know it another major hiccup occurred. 

Six days after the surgery, I noticed her behaviour became odd all of sudden. Jerky and irritable. High pitch crying. Breathing shallow. I first thought something was wrong with her heart. Violent sickness and diarrhea in a matter of 10 minutes, her condition worsened. I panicky rang 999. By the time the ambulance arrived, she was already pale and irresponsive very flat. As soon as we arrived at hospital, she was given strong antibiotics. First 48 hour in the hospital, she was moaning and groaning, did not sleep at all. Horrible to watch your daughter in such a pain. All we could do was holding her hands from the side of high dependency bed. I desperately prayed for her recovery. Next day we were told that she had Ecoli septicemia (blood poisoning). My heart sank. Why her? Why she has to go through with one after another? The cause and source were unknown, but because she was immunosuppressant due to the steroid she was taking for her graft, it probably could not fight against. She ended up staying at hospital for 10 days until she slowly slowly got better. Doctor told us we caught her early. 
(Dear all mothers: if you do not know the symptoms of this deadly illness, please do be aware thisand never ever wait. call ambulance immediately.) 
another hospitalisation at 12 weeks

Since being back home, although she has recovered from the trauma, she had stopped smiling for quite sometimes, which was rather sad. In late October, she had another surgery on her right eye. This time was not a transplant. Instead of taking another risk of losing the right eye whilst left eye hasn’t stablised yet, her pupil was enlarged by cutting her iris partially in order to get as maximum light as possible and for brain to develop. The operation went well, but both eyes will continue to be closely monitored at the hospital regularly and controlled by medication, as rejection could occur anytime. Poor little girl still has to cope with this ongoing madness. 

To me, everyday was just about surviving. I used to burst into tears. I used to feel sad watching other mothers smiling at their babies whilst they were looking at their mother’s face. I used to feel that I wish I had a normal motherhood. But all of that somehow has disappeared with time. We have managed to come this far. My daughter is 5 month old now. Both her eyes are doing well so far and the good news is that she has started to see things! Her smiles, coos, gurgle and all of the noises she makes have made me realise I could enjoy my motherhood. She will continue to have a difficult time, develop slower than normal babies, and more operations to come. Nevertheless, our little fighter continues to bring sunshine into our heart and that has never changed since she was born. 

5 month today. her smile is back.

Thank you for reading this far. If you can share your experience or advice, please do. Or simply wish us a good 2014! We are really looking forward to it after having such a roller coaster year! 

Wishing you all a wonderful Christmas and happy 2014 too! xm 

23 comments:

  1. wishing you an amazing xmas and an even better New Year, what a journey you have all been through, there were tears in my eyes as I read. Sabrina is a fighter and she gets that from you! So lovely that you are now getting smiles! Biggest respect to you all and love and light be with you xxx

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  2. ( I tried to comment from my phone, but not sure if it worked - apologies if you get this more than once ! )
    Oh my goodness what a difficult time you have all had - difficult doesn't seem a big enough word. How strong and brave you have had to be. I'm so glad to hear that Sabrina is doing well and making good progress. Thanks for sharing your experience and I send love and prayers that she will continue to do well. Rhiannon x

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  3. oh what a tough year for you all. May 2014 be one of good health and prosperity and just lots lots better!

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  4. Klara Bradshaw14/12/13 12:01

    Dearest Makiko, when I got to the end of your post I realized I was holding my breath, my heart pounding like crazy in my chest - the fears and worries we feel for our children are simply the most powerful and scariest of all, there's nothing that compares to that! But they also make us the bravest and strongest, you'll get through it eventually and enjoy many more smiles from your beautiful daughter yet! Even when you feel moments of utter despair, you have an amazing bond, your love and dedication is so strong and it will keep you all going and getting better. I think I will give your lovely Light-of-Hope candle holder a new purpose and light a candle there this Christmas for you and your family with a simple wish - no more obstacles, keep getting better! I wish you peaceful Christmas with many smiles and all the best in 2014. Klara xx

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  5. She is a perfectly beautiful baby, and look how she smiles! with you and your husband to love her and be her advocates I know she will come through this with positive results, I wish you much love and energy in the coming new year.

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  6. omi. you poor thing, your poor little darling. I cant imagine how hard this must have been. sending love love love. xxxx

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  7. I am deeply saddened by what your little family's been through, yet inspired by your bravery and Sabrina's strong spirit. May the new year bring continued progress and good health to all of you.
    Very best wishes,
    Mary

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  8. Dearest Makiko, my heart goes out to you brave and courageous family. You've come such a long way, keep your spirits up and keep smiling. Best wishes for a speedy recovery for Sabrina and to her strong parents. Thinking of you all. X Creina

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  9. I hope all the best for you and your little baby. She has wonderful parents!

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  10. What a beautiful baby! May the new year bring much happiness and strength to you, your husband and your little fighter.

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  11. i also wish you stronger days with your new family. you are so wonderful to share your story for many reasons and much help for others. may the new year bring you warm blessings as your life changes moment to moment, you shall always be in my prayers. Peace and Love (i accidently wrote peach instead of peace, so i'll put that back in the mix) i wish you peaches too. xo

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  12. I am so sorry you have had so much to contend with, on top of the usual upheaval that having a baby brings but now it's the present and future that count and I hope and pray that things will slowly but surely become better for you all. Smile and maybe laugh if you can sometimes over Christmas.......! X

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  13. Wonderful to hear that things are improving but sorry that you all have had to suffer such a trial and that there are testing times ahead. Maki you are a fantastic Mum ,do not doubt it! I hope you have a peaceful Christmas and a nice family time together.Thinking of you often and will keep in touch. It will be lovely to meet up again in 2014 :-) XX

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  14. That wonderful smile at 5 months--she IS going to make it and bring joy to your lives and the lives of others! To be able to smile so beautifully after going through so much! THAT is a treasure!!

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  15. I keep coming back here to look at her smile. It fills my heart with joy and I cannot even begin to imagine how it must make you feel as a mother.
    Even though you probably have a ten-ride pass on the roller coaster in the year to come ... don't let that discourage you in any way and stock up on those good moments, the smiles, the lovely noises from your little sunshine girl!
    xxx

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  16. Dear Makiko, you brought tears to my eyes; I always wonder: Why the little ones??? We might never know why, but still have to pick up ourselves and try to be the best parent we can, no matter what! I do know what a tearful start is, my son was born at 27 weeks.
    Praying for your beautiful girl and all your family.
    Wishing you a wonderful Christmas and a beautiful and happy 2014!
    May the New Year bring hope, happiness and laugher!

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  17. Dear Makiko, thank you for sharing your lived experiences with such heartrending honesty. You have all been pushed to your limits and beyond...what strength and courage you have shown. May 2014 bring with it an abundance of good and happy times for you all and Sabrina may she continue to smile so joyfully, surrounded by the healing power of love.

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  18. Your daughter is so precious! I send you love and hugs.
    XXXOOO

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  19. You have had a difficult year, so happy that things are going better.
    Peace and joy to you and your family!

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  20. Hope your new family had a wonderful Christmas with peace and calm. I'll bet 2014 is going to be a fantastic year, all the best. X Creina

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  21. Thank you so so so much everyone for kind messages. Each one of you has touched my heart and I feel so grateful for being encouraged. I am sure Sabrina's got best wishes that she could ever hoped for and 2014 will be great! Hope your new year to be filled with smile and happincess too! xm

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  22. What a brave little girl! I wish you all a fabulous 2014, full of positive steps and progress. Stay strong !

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