Monday, August 20, 2012

My baby is turning five and why yes, I am a very overprotective parent

A rather self indulgent and very long blog today. My baby, Greta, is turning five and I feel it necessary to celebrate for all sorts of reasons. She is a very, very special little girl you see. I know all kids are special to their mums, but this one is that extra little bit special.


I have felt the need for some time to write this blog. This is why I say it's self indulgent. It's cathartic. I don't care if no one reads it, it's just for me.....and maybe she will get to read it one day too.

We, as a family have been through a lot with Greta since the day she popped out. I had a very difficult labour, basically I couldn't push her out. I had been pushing for over two hours before she finally arrived, not breathing. She was rushed to intensive care and I was so tired, I just collapsed and slept. When I woke a few hours later, I looked over at my husband, who looked like he had been hit by a train. As the nurse was  busy trying to get colostrum from me, I was smiling, asking where my baby was and wondering why hubby didn't looked too chuffed.


When they had finished with me, they wheeled me into the Neonatal Intensive Care Unit, where I could see my gorgeous girl. What I saw was shocking, yet beautiful all at the same time. She had not breathed at birth, what the doctors call flat. They intubated her and got her breathing, but she had had a major seizure just after. When I first saw my baby, her body was in a kind of tight spasm. Her arm and fist were clenched under her chin and well, we honestly didn't know what to think. Obviously no body could tell us anything about the damage the lack of oxygen could have caused. We have to wait and see, they said. They have been telling me that for five, long, long years. No answers, no prognosis, just a long, long wait to see how she goes.


When she was first born, we weren't sure how to cope. My husband looked in shock for two whole days and I honestly thought at one point that he wouldn't be able to cope at all. We didn't tell anyone about her birth, we couldn't. I think we eventually called the U.K and told all our friends and family when she was three/four days old, I can't quite remember. The nurses kept encouraging us and kept asking for a name, but we just couldn't face it. It is horrendous to think back on it now, but we just didn't think about celebrating. When we did tell people, no cards or flowers came to our door. (Except one, thanks so very much Becky if you are reading this. Your gift was the kick we needed to start celebrating the birth of our child) People didn't know what to say or do, how to react. They didn't feel it right to celebrate. I don't blame them, I would have been the same.


On day two (is that when those new mother hormones kick in?) Greta totally changed me as a women and as a mother. She was waiting to go for a brain MRI. I was alone with the a nurse, who spoke little English and a guy who was preparing Greta to go in. Having no family in Australia, my hubby was at home with our other child, leaving me at the hospital. The guy thought the way to diffuse the situation was to tell jokes. I remember wanting to rip his head off, but instead I just glared at him. They gave her a sedative so she would be still for the scan. After they gave it to her I noticed she seemed to have a mini seizure. I had been told to look out for them, so I told the nurse. She couldn't understand me, the joking guy looked scared of me, but I did not give in. I demanded they write it in her notes and check her over again. So very unlike me to question a professional. I have continued to question professionals time and time again. They are not always right, trust me.



As I waited for her whilst she was being scanned I went to the toilet. I looked in the mirror and I cried. It had been the first time I had cried for her, my family and myself. We had no idea what the future would bring and I felt so very alone with it all. All I knew was that I had changed. I was like a lioness who would knock down walls to protect my children.



When we got back to the ward, I insisted on trying to breastfeed her. There was uproar in the unit, the nurses physically trying to stop me. But there was no way they could. If all I could do for her was this, then I would. And I did. She breastfed beautifully and the nurses and doctors looked on silently. We showed them!

We finally left hospital and for the next year we were up to our eyes in hospital appointments while they tried to work out what could have caused the flat birth (them not performing an emergency seizure when they could see she was having difficulties had obviously not crossed their minds), and if there would be any future issues.


I had reported to them that she had very little muscle tone, no grip in her hands e.t.c, but they ignored me as the second major problem had arose and they were more concerned about that. Her head was getting bigger and bigger at a phenomenal rate, her measurements were way off the chart. So now we were seeing Neurologists as well as the Paediatricians. They did an MRI on her brain. They were worried about Hydrocephalus. The wait for the results of that scan was horrendous. Again I felt so very alone. There was no one I could talk to. All the mums I knew tried to understand, but you could see it in their eyes what they were thinking "thank God I am not in her shoes" The scan came out all clear and the relief was short lived as the Neurologist was still not happy. He ordered blood tests, more and more blood tests. When she was four, I finally told him to stop. His self indulgent and obsessed mission to find out why she had such a big head, low muscle tone and a dodgy birth had got way out of control and I felt as her mother I had to say STOP, NOW!



When she was nine months I decided to take her to a baby physio as she was not physically doing what she should have been doing. The doctors didn't seem worried, but I was gradually gaining more confidence in that "mothers gut feeling". Within the first five minutes the physio put her hand on my hand and said, look you don't want to hear this but it looks like your baby has hip displasia. At that point I was mad and furious at the incompetent doctors and especially my Maternal and Health Nurse. How on earth could they have missed something so basic? The simple hip click test.



Greta was too old to just go in a simple hip brace and so, just after her first birthday she went for her first major operation to rectify the hip. She was in a complete body cast for three months, leaving just a hole near her you know what so I could change her nappy. All told she was in the cast and then a brace for around 18 months. It was horrible. Sometimes she would just whimper and you had no idea why. She still has to go for scans which will carry on until she is a teenager.




After she came out of the cast and she was in her brace I still wasn't happy with her muscle tone. We went to see a wonderful physio regularly. She diagnosed Greta with Hypotonia, which basically means very low muscle tone. Some people can have it a little and with some it's quite severe. The physio told me that Gretas was pretty bad. She was straight talking and didn't mess around when I asked her questions. Just my kind of gal! At that time the professionals never told me they were worried about whether Greta would walk, but when she finally started to bear some weight through her legs, the physio told me that yes they had been concerned. Their relief was written all over their faces when they saw her standing, albeit wobbly. We then got an A frame for her to aid her walking. As soon as she saw this contraption, it was almost like Greta said, there is no way I'm using that thing! So being the little starlet she is, she stood up and took her first few steps on my Birthday.


We continued seeing the Physio, Neurologist, Paediatrician and Orthopaedic Surgeon. Our days were busy with hospital and other medical appointments. Greta was doing well. Physically she was way, way behind and I had to watch her like a hawk. Twice she had tiny falls, but because of her lack of muscle tone, her very delayed reactions in stopping herself and her massive head(!!) she had concussed herself a few times, banged her head so hard, it had caused a mini seizure and had to be rushed to hospital.

When Greta was three she started to stutter. Her speech was actually fabulous for her age and we felt that it was something we didn't need to worry about. But then the stutter came and just got worse. We went to get her checked out and have been visiting the Speech Pathologist ever since with no real change. Her stutter can be very bad for three months and then just disappear for three months. I personally think she will always have it, but I have let the professionals get their hands on her and do what they think is right. Sometimes its easier than fighting and she enjoyed playing the games.



As Gretas head was still growing at an unusually fast pace, she had another brain MRI when she was 3. Thankfully, they found no Hydrocephalus, but they did find a cyst growing behind her eye. So off we went for a visit with a Neurosurgeon this time. They said they would see how it goes and at some point would have to operate to remove it. They were hoping to wait until she was seven, but after a further scan, they said it had to be done ASAP. Back to hospital she went last September to have it removed. It was a major operation, where they had to cut into her head. She was amazing and recovered much, much quicker than we were initially told she would. We were back home within three days I think.

At that point I did think, no more!! This little girl has been through so much in her tiny little life. I think someone heard me and fingers crossed, touch wood, all finally seems to be going in the right direction.

I held her back from Kinder as physically she would have been a liability. Even though she is now five, she is only just physically matching the youngest of the three year olds. Because of her physical issues, she also had no confidence, she was scared of being around other children, especially the rougher ones. And who can blame her? So this was another reason for holding her back. My gut feeling said it was the right decision, and once again that gut feeling was so very right.



She started off this year in three year old kinder. I was worried about her physically but also socially. After a rather tough start to this year, she is finally flourishing. She started gymnastics about two months ago and I don't know what has happened, but a major switch has clicked in her brain and everything has come together. The Speech Pathologist has signed her off, the Neurologist has signed her off, the kinder teachers seem really happy with her and she is shining for the first time in her life.



Mentally she seems to be doing really well. She is a whiz on the computer and loves Reading Eggs. She knows her letter names and sounds. She has started to read books with me, similar to what a Prep would read. Socially she is really coming out of her shell and loves to play with the boys! Lastly, she has the most gorgeous personality. From day one, most people who come in to contact with Greta fall instantly in love with her. There is something very, very special about her. I don't know what, there just is. She is happy, loving, funny, a bit crazy and has a very determined nature. She is always challenging herself and will never give up on something she struggles with. She is an inspiration. She has made me who I am today and she has changed me unbelievably. I owe my strength, determination and the "do not give up" attitude to her.



Greta today on her 5th Birthday


She is amazing, my little Greta. Happy Birthday sweetheart xxx

18 months on

Well after I wrote that lengthy blog (and yes it totally did the trick. I felt like I could move on to a certain extent after i had wrote it. It was extremely liberating. DO IT if you are going through something similar in your life. It really helps to move on. Sorry, that's a bit Oprah isn't it? Trust me, I'm not usually very Oprah!) I got a lot of feedback from people who were either going through the same thing or had done so in the past. That blog actually helped a lot of people who were going through "stuff" with their kids. When you are going through shit like that, you can't always talk to friends and family about it, they don't understand. So sometimes it's just nice to know that others are going through it and even if you don't know them, THEY understand exactly how you feel. I had a few negative comments, but they were from people who hadn't been there, hadn't trodden the path I'd walked. Hey, ho, that's life!

I've had many people ask how my little pocket rocket has been getting on since that blog so I thought I'd finish the blog up, 18 months on.

We worried about what we should do with Greta with regards school. Turning 5 in the August of 2012, she was more than ready (age wise) to go to school the following February. She had come on so much in the past few months that we were all of a sudden totally confused as to whether we should hold her back a year because of her physical issues (they do that a lot here in Australia) or send her to school.


Well we tore our hair out trying to work it out. We asked everyone and anyone. From professionals to other parents who had been in a similar situation. And you wouldn't believe the strong opinions that people have on this subject. Honestly, I had people arguing if front of me about why parents should and should not hold their children back! Looking back it didn't help me one bit, in fact it confused me more. I'm usually great at going with my gut and making decisions, but not this time. This time I was going round and round in circles with worry and stress. Greta was feeling our stress too and it wasn't having a positive impact on her either.


So we eventually made a decision after what seemed like a very long time and it was initially the wrong one. We decided to hold her back and send her to the local Montessori school for 3 days a week. She started in the October to get her used to it and then we hoped for her to continue into the following year. Well she managed only 5 weeks before we had to pull her out. I have never seen such an unhappy little girl. I know most kids can play up when they first go off to something new, but I could see that she was terrified of going there. Being the way Greta was back then (very nervous) that 5 week stint actually sent her confidence back at least 6 months! It was awful. All of a sudden she was petrified of everything, she wouldn't stop clinging to my leg and I couldn't even go to the toilet without her following me!



Now it was the end of November and not only did we have a very nervous little girl on our hands, but we still  had nowhere for her to go in the February. By now most places had been taken up in the private nursery's and there was no way she could go back to a state kinder at 5 1/2 and do a measly 12 hours. How on earth could she practise her social skills in that time? It was turning into a nightmare.


I started to look at options we couldn't really afford, but I was getting desperate at this point. It felt like this year, if we were to hold her back, then it had to be the right decision, it had to be perfect. We had to find a loving, caring, nurturing school/nursery that would gently hold Gretas hand and lovingly take care of her and teach her.


Well, eventually, we found it. We went for an interview at our local ELC on the last day of school! Talk about cutting it fine! We all instantly fell in love with the teacher, the school....everything. They say to go with your gut feeling and my gut this time was 100% right. She has had THE most amazing year. She's learnt slowly how to interact with other children, she has gained a mountain of confidence and is now really and truly ready for school. Looking back, it was the right decision to hold her back and it was the right decision to plough all our money into this type of schooling for a year and go with that gut feeling!

She has had a lot of Occupational Therapy this year to help with many areas where she struggles: social skills and fine and gross motor skills. She was diagnosed with dyspraxia earlier on in the year by her amazing OT so we know that she will always struggle in this area. But my God, looking back to the day she was born, it could have been a hell of a lot worse! We feel very, very lucky.


Image courtesy of Abi Harrington photography 

Unfortunately, she went back to hospital in Sept 2013 to get her hips checked (a regular check up from the hip displasia op she had when she was 1) and she will have to have a further operation as the bone isn't growing as it should. This is on Thursday, 4 days before school starts (which isn't ideal!!), but we are hoping that with her newly found confidence she will sail through it.



So I will say goodbye to my precious little girl on Monday and it will be very, very hard (I have tears now just thinking about it!). We have been through so much together and I know that now I will have to pass her over to somebody else to take care of her. We have explained our worries to the school about how she will manage in the playground (I am worried SICK to be totally honest) and we just hope that they have taken us seriously and will be putting something in place for her.



We have done ALL we can for Greta. She has had physio, speech therapy, OT, a school readiness programme, the best education (2013) and all the love and confidence building that we can have given her. She is nervous of school but is so excited to be at school with her big sister. They are extremely close and  Maddy is THE most amazing and kind sister anyone could have, I'm so proud of her.


6 1/2 years on, we've come out the other end. We are a bit more wrinkled with worry, but we are smiling and she is confident and beautiful. We've done the best we can and that's all you can do isn't it?

To a certain extent it is now up to her.

Good luck little Greta. Go ahead and SHINE
xxxxx



23 comments:

  1. I Don't usually read long posts ( I'm all about the visual) but I hung onto every single word.

    Your little Greta is so very special, and I can feel your love for her in this post and it is just amazing.

    Happy Birthday to your baby girl!

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  2. Thanks Julia. Yes she really is. She has the most fabulous nature, never moans or complains. We feel very luck to have her in our lives :)

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  3. Your blog is amazing and what an amazing family you all are. My story is not too different from yours with my two sons. When I have the strength.. I too will write... at the moment it stays in my head! xxx

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  4. What a wonderful read at the end of the day.
    Congratulations Ali on your strength, your perseverence, your love and your beautiful daughter and family. All the best to Greta for a lovely birthday!

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  5. When you are ready, go for it. It's very cathartic. I felt angry for years, angry at doctors and other mothers who have never had to worry about their children. But now (thankfully) I feel we have popped above the clouds and have started to smell the flowers for the first time since she was born. You will too one day. Good Luck :)

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  6. Happy birthday to Greta. I hope it gets easier for you both. Thank you for writing this. What a strong mother you are. Ally G.

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  7. Well luv, I remember those first two days as Miss Maddy and I were very excited about Baby Greta and she played to beautifully with Miss Ash when she stayed with us. I know how Dave was I saw it in his face when he collected Maddy. I just wanted to run and give you a huge hug but was led by your journey, it was yours/Dave's and the girls to run that race.... and boy you ALL HAVE!

    You talk about her determination, her strength, her attitude this comes from a lady that I know who has that in spades. She has such a large essence of you. Mum the pocket rocket and Greta the "pea in a pod!". How proud you both should be.

    Whilst your post is about you the words you spoke of her arrival resonate with me more than you know. In 1968, I was born at 26 weeks prem to a 23yo mum. Both my lungs collapsed I was given oxygen. I did not feel my mum or dad's real touch (it was via gloves back then) until they took me home and I was 3.5months old.

    Long story short 44 years later I am here.

    Here's to Greta's first 5. May the next 95 be just as magic and for those who are around her, enjoy the ride.

    I love all four of you. Miss being close by. Admire your stength and relish your passion.

    Thank you for sharing.

    Happy Birthday lovely Greta. xxxx pip and fam.

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  8. That was a beautiful heartfelt read, it brought a tear to my eye and made me appreciate my two precious kids that bit more. As a medical professional myself I absolutely know that we don't always get it right. You should definitely keep listening to that 'mother's instinct'.

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  9. Thank you for feeling the time is right to share. I've been reading your blog, through the tears.
    One day I'll be ready too... but for now I'm grateful (and frustrated and angry at 'professionals') that I too have a special little girl that everyone falls in love with.
    Happy Birthday to Greta (amazing name!)
    Love and best wishes to you and your family x

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  10. Very movingly told. So nice to hear Greta is doing well. Happy Birthday x

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  11. That was just so beautiful Ali. It's lovely to hear your families journey. Those moments when our kids have developmental spurts are just amazing...long may they continue xxx

    Nicola x

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  12. What a beautifully written blog. And you made my mascara run! Happy Birthday Greta, you are so special with a very special Mummy.x

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  13. Thanks for all your lovely comments ladies. Pip, I can't imagine the position you must have been put in when Dave came to pick up Maddy. It must have been awful, awkward and difficult. One day we will get our girls together again for a play hey!!xxxx

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  14. Thanks everyone for your lovely comments. I didn't want to make people cry. Like I said, I "needed" to write this. For me. I needed to put this behind me and move forward. Writing this blog has made me feel quite empowered (sorry, that sounds a bit Oprah doesn't it?!) I thought I would find it difficult, but I didn't. It all just rushed out of me in one go (apologies for spelling and grammer mistakes)

    A few of you have said that she is lucky to have me as a mother. If you were put in my shoes I bet that you too would have done the same. When we become mothers we change, probably more than we think we have and I think there is a lioness in every single one of us xxx

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  15. Very heartfelt and a real mom telling her journey. This was beautifully told to where we all felt your pain and joy. A Happy Big Birthday Greta!!! You are loved by many.

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  16. My favorite blog post to date Ali. A very moving piece of writing (and so candid), it was both heartbreaking and heartwarming. I just want to echo all the comments so far and I can i just add, that photo at the beginning of you holding baby Greta is breathtaking, it speaks a thousand words to me. I see all the emotions you have described, and I see the lioness.
    Happy Happy Birthday Greta, you guys sure have a lot to celebrate today :-)

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  17. i couldnt stop crying, i've had my 4 year old in and out of hospitals with several different problems and its the gut feeling that got us to the problem in the first place.
    you are a strong and wonderful mum. with one stong and awesome daughter. all the best

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  18. Hey Ali, What a beautiful post you have written It's a real testament to the strength of you, Greta and the rest of your family. I never understood the extent of your challenges together and am overwhelmed to read all of the obstacles you have jumped, gone around or just beaten down! A very happy birthday to Greta and a big hug for you as a celebration of what's already been achieved and what's to come. Love Jodi

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  19. Yay Greta - what a champion! and Yay for her fab family who know exactly what she needs
    :)x

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  20. What a lovely post, I read it with a tear in my eye, what a beautiful celebration of your daughter it was!

    Belated Birthday wishes to her!
    Fleur xx

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  21. Thanks for all your lovely comments. I didn't want to make anyone cry, honest! I think Greta's story up to now, yes, its been a really tough road, but we are coming out the other end. We are getting through the clouds and the view is starting to look pretty damn good. It all could have been very, very different and we appreciate our little girl every time we see her achieve the most simple of tasks. We had the best Princess party yesterday with all her girl Kinder friends (no boys allowed). We were so proud to watch her confidently take centre stage, to run, dance and jump with the other kids. She talked, chatted, sung and adored being the centre of attention. We feel we can stop worrying about her so much now and just enjoy her xxx

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