My sweet sweet little angel, the past two weeks have been at the least a complete nightmare and totally draining and emotional on all of us. So many tears and heartache - I never thought it was possible to cry so much and feel like my heart is being ripped out so violently that it would stop any second and never beat again.
This is now week three that you are in the hospital. Two weeks ago you were a little lethargic but we were not concerned cause you are normally a little tired if you havent slept the night before. By Monday morning you were running a fever and screaming. We phoned your doctor and he told us to come in straight away and once again the worst, he told us you had pnuemonia and had to be admitted and it all just went downhill from there. By Thursday you were no better and just seemed to be getting worse and the doctor said that things werent looking good. The intravenus meds werent working and your temperature still hadnt broken and you seemed to be in so much pain. Daddy and I spent the day crying, holding each other and talking to and holding you. I guess we were convinced that we would need to start preparing ourselves, - how does one prepare yourself for the loss of someone you love so so so much and that is so much a part of you. We phoned the family and told everyone that its not good and they need to come see you. Your sisters finally broke down and just couldnt any more. They have been so strong and so loving, but the emotion finally peaked. My heart was breaking even more knowing that they were in pain seeing you they way you were. I just wish I could take all the pain from all of you, including daddy and bury it somewhere where it will never be felt or seen again .... EVER !!!
It hurt so much to look at you and know you were not getting any better and there was nothing we could do. Even with the oxygen you could hardly breath. You were weezing and crying non stop, even the nebulsing didnt work. The doctor asked the physiotherapist to suction you and send it away for testing. The tests came back positive for the RS VIRUS- a deadly virus in itself (especially for babies), and the fact that your lungs arent good as is and the fact that your features are so so tiny from the T18 and that you had pnumeonia was pretty life threatning itself. We changed your antibiotics and by Friday there was no change - not better but no worse either - which I suppose was better news, but not what we wanted to hear. Finally in the evening your temperature broke - 5 days later - my heart just burst, we were finally on the road to recovery.
But when it rains, it doesnt just pour, we have torrential thunderstorms - you had now also picked up the Rota virus, your feeds went in and came straight out. We were told if you werent on the drip you probably would not be with us, you would have dehydrated within hours. What more could go wrong? We now just had to wait for it to work out your system - how long would it take - more than long enough !!!
Another storm - a specialist came to see you so we could try and arrange for a little back brace - to help you sit - ..................... and now its flooding. Your little spine has curved too much and is causing so much pressure on your little lungs and rib cage, the brace will only make it harder for you to breath. No surgery for you - just no way .............. and then another flood. Both your hips are out of their sockets (dislocated). You were most likely born this way cause you have never given any indication of pain in your legs - how much more can you take, how much more can we take. Is God testing you and us beyond our limits?
As each day has gone by you have been getting better and better, your lungs sound clearer and clearer - we are at the end - no more surprises, we should be going home soon ......... We are now at the end of week two and mommy had to go into the office while daddy looked after you duirng the day - which undoubtedly you love, you love your daddy so much - no one could ever say that you dont respond to him - because we notice it within seconds, how you cuddle up to him when he holds you and nudge your way into his neck so that you can feel his skin on yours. You are there, you are more than what anybody said you would ever be.
I have phoned to check in on you and all good - you are cheerful and playing. Not so long after ........... the call I have always dreaded - come to the hospital quick - how, why, how why, how why, GOD PLEASE !!!!! - from one extreme to the next. I heard daddy 's voice and I knew. I went completely cold. You had stopped breathing again and this time it was not good. They took you from daddy and wouldnt let him in the room. My mind, body and soul went cold - almost as if a calm went over me - how, why ?????
Mommy just got to the hospital when daddy phoned to say you were breathing and okay. It felt like years before I got to you and when I saw you, besides your breathing being a bit laboured it was as if nothing had happened. How do you bounce back so quick? Is it cause we love you so much and you fight so hard to stay ??? Is it because you feel we will fall to pieces. I know we will, but we love you so much we know we will need to keep going.
After everything your little body has been through, your little light keeps shining, brighter than ever. It shines so bright I can feel the glow on my skin, the tingle through my veins and smiles it brings to all of us.
IF ITS GOD'S WILL, SHINE MY LITTLE STAR - SHINE EVER SO BRIGHT !!!!!
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