Letters to Lior

Trsiomy 18


There are 23 pairs of human chromosomes. In Trisomy 18 (Edwards syndrome), there is an extra chromosome with the 18th pair. Like Trisomy 21 (Down syndrome), Trisomy 18 affects all systems of the body and causes distinct facial features. Trisomy 18 occurs in 1 in 3,000 live births.It is three times more common in girls than boys. Unfortunately, most babies with Trisomy 18 die before birth, so the actual incidence of the disorder may be higher.Infants who survive, experience serious defects and commonly live for short periods of time. Trisomy 18 affects individuals of all ethnic backgrounds. Trisomy 18 severely affects all organ systems of the body.The majority of children who are born with Edward's syndrome do not live past their first year of life. Their average lifespan for half of the children born with this syndrome is less than two months; approximately ninety to ninety-five percent of these children die prior to their first birthday. The five to ten-percent of children who do survive their first year experience severe developmental disabilities. Children who live past their first year require walking support and their ability to learn is limited. Their verbal communication abilities are limited as well, although they are able to respond to comforting and have the ability to learn to smile, recognize and interact with caregivers and others. They can acquire skills such as self-feeding and rolling over.

Wednesday, May 25, 2011

Feeling broken

Mmm my precious baby, where does mommy start ...... This last week has been simply horrendous and probably taken 20 years off my life. When no one is with us I find myself crying and some mornings have woken up with tears on my face.  I am so tired and feel like I havent slept in over a week and as though I have been steam rolled (granted I have had very little sleep but it really feels like I havent had any)

Last wednesday I got home from work and you were sleeping. Eventually you woke up and chatted a bit with me and you were a little restless. A while later I said to daddy I am going to put you in bed with me and we are going to sleep for the night. Well needless to say I put you in the bed with me and the minute I closed my eyes you were a niggly and moaning, so I took you and we went and sat in the lounge with daddy a bit. You started crying but it was a different cry to your normal niggly one.  I thought you were at the start of a seizure so called daddy cause you normally calm down when he talks to you but no such luck. All of a sudden daddy screamed get the keys and told the girls to go next door, you were totally blue in the face and by the time I got to the door you had stopped breathing, your jaw was clenched and by the time we were out of the drive way and a little down the road I realised you were not going to come round yourself, and that I would have to rescusitate you. While daddy was driving, or should I say flying he was trying to keep mommy calm and telling me to breath into your mouth. I have never done CPR before so I guess was going according to what you see in the movies ...... how typical ....... but whatever I did worked, cause when we got close to the hospital you took a breath and slowly started to come round.  I seriously think I need to do a first aid course !!!

Everything is such a blur I just remember getting out the car and running, I dont even know if I closed the door or not, we screamed through the hospital into casualty and screamed at the doctors to help - they were very quick on the mark and treated you with oxygen immediately and stabalised you and called your paediatrician who told them what to do. The doctor admitted you immediately. It took forever to get your file and then eventually when we got upstairs they had to put oxygen tubes in your nose, which you wanted none of, and began crying histerically again almost to the point that you nearly stopped breathing again. I was so nauseus and just had no idea of what to do with myself.

So once again we are in hospital where I know I cant leave you alone for one second, cause the nurses just dont know how to look after you. It was your sister's 16th birthday the following day and I felt terrible having to phone her and wish her a happy birthday, I had to try and hold back the tears when I spoke to her, but didnt do to well at it, so she landed up going to school a little on the sad side :( at least Tia thought of going to my cupboard and looking for her present to give to her, so at least she felt like she got something.

We got all the results back from the tests and everthing was negative, excpet for the fact that you had a viral infection .... what viral infection we have no idea, but again basically put down to a common cold. You have been having physio which you totally love, calms and relaxes you so much.

We saw the ENT on Monday and he told us that you would have to have grommets put in ..... which means anaesthetic again .... so daddy and I decided we had to do whatever it takes to make you comfortable and right now you were not comfortable. The anaethetist said she would do whatever she had to and called in some back up - I think you are the first one to have had THREE anaethetists in theater with you. I think she was seriously worried about you cause after theater she came and checked in on you after having phoned twice. Now thats what I like, a personal touch and not just treating us like we are objects.

All though everything went well, the after effects werent great, you cried and cried and cried and cried some more. Eventually with some pain meds we managed to settle you but you still did not sleep, even after all the crying. Those little eyes were so red and puffy. Last night was a very difficult night, you were acting so strangely, and it went on for hours. You seemed to have had all the strength in the world, fighting me every which way ..... you werent crying .... you were just .. I dont know, I dont know what you were last night. At one point you heart rate was over 200 but came down. Even the nurses/sisters did not know what to do. Eventually they gave you your "sleeping meds" which would normally knock you in ten minutes ... Bwha ha ha  - lets try an hour and a half later, but once you were down you slept well.  Mommy on the other hand passed out almost immediately after that, I remember telling the nurses to wake me at half past two so I could give you some cerelite, which I remember them waking me up, but only remember giving it to you some time after three. Then they eventually woke me up after seven this morning to my total surprise, it still felt like I had just fed you and climbed back into bed, if thats what you can call it (its more like a theater bed they give you to sleep on) I suppose I should be grateful at least I have something to sleep on. The doctors says if all goes well today hopefully you can come home tomorrow.

This was it, this is what has finally had me feeling broken and helpless and that I couldnt do anything for my baby. Still find myself crying and not being able to accept or deal with it. My mind is so tired, my body is so tired, emotionally, physically everything is tired. I have never been so petrified in my life, it keeps playing over and over in my head, I have to try and stop it.

Loving and adoring you so much my angel and praying with all my heart

1 comment:

  1. Lior my baby get well very soon....Kim I am thinking of you and your family,I pray that the Almighy God will bring healing unto Lior so that he can go back home,I too do not like hospitals.Stay positive

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