Many things have happened since the last post, many good, many not so good. The biggest thing was the visit from the physio just yesterday and imagine my relief when she confirmed that my little girl was focusing and responding to her. Ava was also playing with her favourite toy by batting out to it. Due to the medicines that Ava is on it is likely that her muscles are very relaxed and so harder for her to control so I will be placing her on her side to play as this is easier for her, she will be getting more tummy time to develop her neck muscles, as at the moment the task of holding her head on her own is very big for her - we will be getting a special chair to assist with this skill. Ava will also have some sessions in the sensory room at Chester-le-Street Hospital. Her development will be slower than others as she has been so poorly, and still is. I have to ignore normal milestones as ava has her own timetable - we don't know what it is yet!!
Her head growth still remains very low and her weight is a continual worry. She put on 14oz over 2 weeks then this week lost 3oz. It is not surprising though as we had a very bad weekend as Ava was fitting alot more and fed really badly - we were lucky to get 6oz in her on Sunday. We have responded by uping her meds but other than calming down her fits, it hasn't stopped them so it looks like we will be starting some new meds very soon. Ava had her 2nd set of immunisations yesterday so only time will tell if this is going to set her back like the 1st set did.
I have started cognitive therapy and counselling now - both of which have been very helpful for me to help cope with this difficult time. I spend more quality time with both the girls individually but have to work on getting me time - very low down my priorities but a big neccessity I am told. I hope Ava continues to make progress for the next installment and thank you for your continued support.
Friday, 18 March 2011
Friday, 4 March 2011
The Rollercoaster
This has been a difficult week with loads of ups and downs. We were struggling at the weekend - how anyone comes to terms with this type of news I do not know. Lots of people have messaged and texted and rang. It is these friends and family who have helped to get us this far and I want to say thank you from the bottom of my heart. I know it sounds daft but just that message of hope or support or the call round for a cuppa helps to make this whole ordeal easier to deal with and makes it seem less scary.
Ava has had a difficult week. She has caught the chicken pox on top of a very bad cold and cough. We had to cancel her 2nd immunisations until she is better. Unfortunately she has been having stronger and more frequent seizures, especially today (Fri 4th March). I called our consultant and spoke to him about Avas condition and the fact that she is off her feeds. It is so reassuring knowing we have him by our side.If she remains off her feeds we may have to have a feeding tube fitted. Her medicine has increased to combat the seizures, fingers crossed it works.
Early in the week we had a specialist health visitor and our epilepsy nurse visit us. As a result we have been referred to portage, physio and a dietitian. It was such a relief to know that we don't have to do this on our own. On an even brighter note, we had reduced Avas meds a little and she was a lot more alert and focused on the nurse, laughing and giggling and concentrating on her face - a break through which we are hoping means its her meds not her brain making her unfocused. Even better, Ava has managed to smile, giggle, roll over and hold her hands together this week - despite her extra illnesses. I just think if she can do it so can we.
Ava has had a difficult week. She has caught the chicken pox on top of a very bad cold and cough. We had to cancel her 2nd immunisations until she is better. Unfortunately she has been having stronger and more frequent seizures, especially today (Fri 4th March). I called our consultant and spoke to him about Avas condition and the fact that she is off her feeds. It is so reassuring knowing we have him by our side.If she remains off her feeds we may have to have a feeding tube fitted. Her medicine has increased to combat the seizures, fingers crossed it works.
Early in the week we had a specialist health visitor and our epilepsy nurse visit us. As a result we have been referred to portage, physio and a dietitian. It was such a relief to know that we don't have to do this on our own. On an even brighter note, we had reduced Avas meds a little and she was a lot more alert and focused on the nurse, laughing and giggling and concentrating on her face - a break through which we are hoping means its her meds not her brain making her unfocused. Even better, Ava has managed to smile, giggle, roll over and hold her hands together this week - despite her extra illnesses. I just think if she can do it so can we.
Monday, 28 February 2011
The morning after the night before
I have been sat here a while, with lots of stuff swimming in my head, what do I say? What can i do? I wish someone could make it all disappear and make it all better again.
Last night I felt strong, this morning I feel weak. Molly had me awake for half the night - I know she is feeling the tension and sadness in the air so now has resorted to not sleeping well - this happened when we first got Ava home the last time, I so wish I could make her life happy again - a wish I will make come true.
Today has been very very tough, I think I am still in shock over the news. How can my Beautiful baby girl not lead a normal life, how can she not be normal? She looks normal in every way shape and form. I have spent many hours just crying today. My breakthrough and ray of sunlight was my girls. Molly asked mamala - (Thats me, her mammy), and daddy to come and see what Molly has done. Our clever little girl had completed her 'Stage 1' jigsaws all by herself. We all went to maccy D's - big disappointment - for tea. When we got home I did Avas bath and bedtime. In that hour she laughed, giggled, squealed, smiled, held her hands together (For the very first time) and held her mammys gaze for an age as she fed on her bottle. I thought hope had abandoned me - in fact it was me who had abandoned hope. No longer. My little girl is a fighter, my little girl is special and most of all my little girl is mine and I refuse to believe she is not going to get through this. Lets keep climbing.
Last night I felt strong, this morning I feel weak. Molly had me awake for half the night - I know she is feeling the tension and sadness in the air so now has resorted to not sleeping well - this happened when we first got Ava home the last time, I so wish I could make her life happy again - a wish I will make come true.
Today has been very very tough, I think I am still in shock over the news. How can my Beautiful baby girl not lead a normal life, how can she not be normal? She looks normal in every way shape and form. I have spent many hours just crying today. My breakthrough and ray of sunlight was my girls. Molly asked mamala - (Thats me, her mammy), and daddy to come and see what Molly has done. Our clever little girl had completed her 'Stage 1' jigsaws all by herself. We all went to maccy D's - big disappointment - for tea. When we got home I did Avas bath and bedtime. In that hour she laughed, giggled, squealed, smiled, held her hands together (For the very first time) and held her mammys gaze for an age as she fed on her bottle. I thought hope had abandoned me - in fact it was me who had abandoned hope. No longer. My little girl is a fighter, my little girl is special and most of all my little girl is mine and I refuse to believe she is not going to get through this. Lets keep climbing.
Sunday, 27 February 2011
Black Friday
We have now spent 2 days in a hell like state - although life was not too much better previous to this. Lets go back to the beginning.
On the 19th November 2010, our beautiful baby Ava was born. 3 days later she was in intensive care fighting for her life. She had profound hypoglycaemia, caused by my breast feeding. She had been feeding for 2 days but only getting the colostrum which did not have enough calories in to sustain her. By the time my milk was through it was too late. The consultant explained that Ava had not made the switch from burning glucose for energy to burning fat for energy. This left her with 0 glucose in her body - only one other case like this had been seen in the north East ever!!!! Your brain needs glucose to function and as such her brain shut down and started to die. It is a miracle she is even alive today. I had nursed her all that first night we were home from hospital, on my chest - kangeroo care all night - this I believe had saved her life. Why did you not contact the hospital straight away I hear you ask? Well we did 3 times for advice because Ava stopped feeding at 8.30 that first night. The response was always the same - leave her a few hours and try again.
The midwife arrived late morning and as we attempted a bottle feed she had an apnea (when the baby goes blue). The ambulance was called and we were rushed to hospital. Within 30 mins she looked like the picture you see on my profile.
It is now 14 weeks later and Ava has reached lots of her milestones - rolling over, smiling, holding her head up. We were told she has permanent brain damage but what effect this will have for her future we don't know. The reason for this is that being a baby she had hardly begun to use her brain and there is a slim possibility that she can rewire her brain and use different areas for her skills.
However, in the last few weeks Ava has stopped gaining weight and her head circumference is now off the centile chart. The consultant told us this Friday that her brain is not developing at the rate it should be because of the sustained damage to the cortex which is further backed up by the fact that she doesn't hold your attention like a baby should. It is hard wired into all baby's to look into a persons eyes, Ava doesn't do this very often and then only holds your gaze for a few seconds. He told us that she is going to need a lot of support in the future, how bad it will be he can't say. He isn't saying she won't make mainstream school but he isn't saying she will either. Ava also has epilepsy and fits dozens of times a day, she is on medication for these but so far it isn't working.
I decided to write our journey together to help us through the dark days ahead. We have made it this far, we will continue to climb the mountain. On a positive Ava smiled, giggled and rolled over today.
On the 19th November 2010, our beautiful baby Ava was born. 3 days later she was in intensive care fighting for her life. She had profound hypoglycaemia, caused by my breast feeding. She had been feeding for 2 days but only getting the colostrum which did not have enough calories in to sustain her. By the time my milk was through it was too late. The consultant explained that Ava had not made the switch from burning glucose for energy to burning fat for energy. This left her with 0 glucose in her body - only one other case like this had been seen in the north East ever!!!! Your brain needs glucose to function and as such her brain shut down and started to die. It is a miracle she is even alive today. I had nursed her all that first night we were home from hospital, on my chest - kangeroo care all night - this I believe had saved her life. Why did you not contact the hospital straight away I hear you ask? Well we did 3 times for advice because Ava stopped feeding at 8.30 that first night. The response was always the same - leave her a few hours and try again.
The midwife arrived late morning and as we attempted a bottle feed she had an apnea (when the baby goes blue). The ambulance was called and we were rushed to hospital. Within 30 mins she looked like the picture you see on my profile.
It is now 14 weeks later and Ava has reached lots of her milestones - rolling over, smiling, holding her head up. We were told she has permanent brain damage but what effect this will have for her future we don't know. The reason for this is that being a baby she had hardly begun to use her brain and there is a slim possibility that she can rewire her brain and use different areas for her skills.
However, in the last few weeks Ava has stopped gaining weight and her head circumference is now off the centile chart. The consultant told us this Friday that her brain is not developing at the rate it should be because of the sustained damage to the cortex which is further backed up by the fact that she doesn't hold your attention like a baby should. It is hard wired into all baby's to look into a persons eyes, Ava doesn't do this very often and then only holds your gaze for a few seconds. He told us that she is going to need a lot of support in the future, how bad it will be he can't say. He isn't saying she won't make mainstream school but he isn't saying she will either. Ava also has epilepsy and fits dozens of times a day, she is on medication for these but so far it isn't working.
I decided to write our journey together to help us through the dark days ahead. We have made it this far, we will continue to climb the mountain. On a positive Ava smiled, giggled and rolled over today.
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