This has been an amazing week for Skylah. Since our last email, Skylah’s liver bilirubin levels have dropped down to 53 from 270 a couple of weeks ago – the normal range is below 40 so this is a huge turnaround. Her skin is beautiful, smooth and with no rash. She is no longer just sleeping all day long but has a proper routine of sleep, eat and play. On Thursday they switched off her PCA machine which was her morphine supply. She was on it for 2 months so it was a huge celebration. She is now just on oral morphine when needed, thank you Lord. We also got the green card to take Skylah to the park because they have started weaning her TPN and only have a few hours of needing medicine via her IV lines. It was a moment and a dream that we have had for so long and the reality was as good. We can’t go by crowds but luckily our favourite park is huge and we found a nice spot to smell the flowers, feel the grass, watch a squirrel and feel the warmth of the sun. I just want to cry again when I think back as it was so special. In the beginning she wasn’t very sure about it all but by the time we had to go back to hospital she was aware of her surroundings and the blessing. A month ago Matt told me that he got a word from God that we must not worry about Skylah eating. It was hard for me to imagine because the last time Skylah ate properly was October 2012. Well, like Matt said “I told you so” because little Sky is eating so much with a wide mouth open and ready for more each time. It’s such a pleasure seeing her appetite and love for food return and can’t thank God enough for this breakthrough! On Friday 5 July she is going under General Anaesthetic to have a PEG put in. This is a special feeding tube that is inserted into her tummy and will allow us to top up her nutrition and fluids with special milk feeds and also enable us to more easily give the large number of medicines she will still need for quite a while after she is discharged. This is a huge blessing because for 4 months we tried nose tube feeding with no success. I have hope in the PEG that she will keep milk feeds down and it means that I don’t have to wake her through the night anymore to take her 100’s of medicines - we can just put it into her tube. This has been a hard and emotional week for me though. Since having the boys visit a couple of weeks ago things have gone a bit pear shaped. It’s like reality kicked in with them that we have been away and the boys just don’t want that anymore and are not handling it at all well. There have been lots of tears and Kheya has become very insecure and scared. It’s breaking my heart that all they need is their mommy, daddy and sister to be home with them and that I can’t make that happen. If you think it’s been nearly 2 years now that their lives have been put on hold and we are so close that I can’t accept this emotional trauma to take hold of them. Teghan got sick from Wednesday and there was nothing I could do to help him, no mommy cuddles to reassure him that all will be ok. Then on Friday was Kheya’s Birthday (thank you to everyone that sent Birthday wishes) and it just reminded me of when it was Teghan’s 4th Birthday two years ago and I also wasn’t there because we were in hospital. My Mom and Dad brought the boys down to visit and we did get to celebrate his Birthday on Saturday but it’s just not the same and I felt very sorry for myself. Then something happened that allowed me to feel sad for a worthy reason and that allowed me to release all the emotions of my own troubles and I cried all Friday night, I just couldn’t stop. You must understand that before I share what happened, that living in a hospital the other parents become your family. We share and help each other every day and their lives become your cares too. Our room is opposite to little baby Harry’s room, who was 10 months old. I called him Skylah’s friend and every day we would involve him in our day. They never met, they never touched or even came close to each other but he was always there. A couple of weeks ago the Doctors told his Mom that unfortunately they can’t do anything for him anymore and it was only a matter of time. I prayed with his Mom and tried to encourage but it was bad and he was in pain. On Wednesday he was baptised and afterwards for the first time in his life they allowed her to put him in his pushchair and to take him outside for few minute’s walk. He had the most beautiful pram and it was the first time she got to have the honour of pushing her baby in it but knowing that is was probably her last time too. On Friday morning he passed away in her arms, two days later. You could wonder why I am telling you this and I’m sorry because it is sad but the saddest part for me is that you read this and feel sad but then carry on with your life. I used to do that. But now for nearly two years I have seen, felt and heard so much pain and in eight months I have witnessed three children dying - seeing what they and the parents go through during those last few days before they die while I am here with my own child fighting for her life. I am struggling and have had enough of living around pain and death. I want to go home now. I want to forget about all of this sadness. Sometimes I just pray and ask God to send Jesus down on His cloud and fetch all of us because life on earth is too painful! Every stage we have gone through, God’s word has helped us to know how to deal with it, how to pray, what to believe and how to live. It’s our only saving grace and if we can just obey God’s word we can do this, we can survive this journey of hell and come out of it stronger and more in love with God. I have asked the Doctors if we can go home on the 10th of July. I have missed enough Birthdays, weddings, first days of school and special events in my family’s life. On the 11th of July, it’s the boy’s sports day and they want us to be there. I want us to be there. When I told them my plan, my dream, they laughed and said “that’s pushing it and probably not possible”. I told them “with God all is possible and I will pray for His Will to be done”. So now I am asking God to see this mother’s heart and give us this miracle. I am counting down and it’s a battle and a fight everyday to try and make it possible but I have hope. Very soon you won’t have my demanding prayer requests but today I have a few: To go home Skylah needs to receive the PEG on Friday without a problem and she needs to heal and tolerate milk feeds. It needs to go so well that they can increase the volume pretty fast so that by next Wednesday she is getting enough fluids for the Doctors to be happy for us to go home. Please pray for Skylah who’s been struggling a bit with withdrawal symptoms of morphine and also her strong steroids dose that has made her very emotional and very needy and she struggles to sleep properly. My Mom and Dad had to postpone their flight by a month to help us. They are my hero’s the way they are sacrificing their lives to look after the boys and it’s hard work so please pray for strength and patience and wisdom. Last night Kheya told my Mom the reason why he can’t sleep at night is because he is afraid they will leave him. Please pray for Kheya to be healed of all emotional trauma of us leaving him and not to be scared anymore. For both boys to have peace and joy and not to be affected by this. Wisdom for Doctors and the biggest prayer is just for God to protect us all and to reunite us as a family soon! I feel so horrible that I don’t email anyone back. Your emails and support are what has helped us get through this so please forgive me. Please just know though that we appreciate and need you and hopefully one day we can be there for you if in deeds or prayers but you can count on us. I know God will bless you for staying with us and carrying us. I went on Skylah’s Facebook page the other day and was in total shock to see all the responses and prayers. It makes me smile because if you recall months ago when I said I want the whole world praying for Skylah...well it feels like that wish came true and it’s thanks to you! Love, Zelease
Posted on: Thu, 04 Jul 2013 08:30:45 +0000
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