Monday blues

I don't like Mondays. If Monday sets the tone of the week, frankly I am done with this week already. 

Today we had our appointment with the respiratory paed. We missed our own paed, but got the other senior consultant who is also pretty good and on the same page largely as our doctor. The appointment was by and large, productive. Wriggles had a lovely time playing with the toy truck (future mechanic?) and all hell only broke loose when she needed to be weighed. Unfortunately she must associate side rooms with nurses as synonymous with blood tests and fear, as in seconds, my chirpy little bean was a screaming, rigid, limpet who needed peeling off me. She was so distressed she was stiff as a board and still crying to be measured, so the nurse wrote down "uncooperative with height". I bit my tongue. FFS, she's fucking terrified, not being naughty! She is 2 and has been through more procedures than many do in a lifetime! I know she only meant it in a jokey way but it really made me bristle.

The actual appointment was very thorough. The immune results are not back but will be chased with a letter to the GP confirming if they request a booster vaccine and if so which one, the feeding they are happy for me to manage with help of the dietitians ("and keep hoping"), her tonsil size was checked and we went over her list of medications and checked dosages. We discussed her sleep study and went over sleep history and patterns and they notes even static in the daytime, Wriggles is a noisy breather. This had got a lot better during the autumn but has slowly crept back more and more. The consultant confirmed he thought it would be beneficial to removed tonsils and adenoids. The tonsils are a moderate size and the adenoids are quite large, and we are not yet at 'peak growth' period. He added it may possibly help the night refluxing, as she sucks in her stomach muscles to help breathe when the adenoids narrow her nasal passages, and the extra abdominal work put pressure on the stomach which combined with a lax stomach valve and tummy full of night feeds can aggravate reflux happening. So whilst it is far from a guarantee, it is a bit of hope. I have also read other parents with food aversive children relating that tonsils being removed helped with food consumption and swallowing difficulties. Again, a sliver but hope but sometimes a sliver is all you need to keep going. I have all the usual concerns about having a general anaesthetic and surgery, but a tonsillectomy/adenoidectomy is a pretty common and standard op and aside from GA the only real risks are infection which in our case is heightened as she will not be allowed oral fluids to help the healing site. But as the consultant said, "I have only regretted not sending some children for a T&A, in 15 years I have never made a referral for one I have regretted or has had negative results." That sells it for me.

The thing which did deflate me was another mention of fundoplication; surgery to essentially wind the stomach top around itself to form a wrap to keep contents from refluxing up. This surgery has been discussed on and off since the summer when aspiration was really taken seriously and the feeding tube placed. If the surgery was simple, I would happily sign on the dotted line yesterday. Control reflux? Eliminate vomiting? Be my guest! However, unlike the T&A this is not so simple. It is more major surgery and there is a higher risk attached. Side effects are far more common and the recovery period can be fraught. It is one I have read up on over and over, and whilst I do see the positives and know it has improved things for many, it is not one that sits comfortably with me. That said, we are running out of things to control it. This decision is one that does not have to be made imminently; the doctors are still undecided on whether it would suit us so we have so time to hope either the T&A, diet, maturity or something magical help to control or better still improve things. We had a chest X-Ray to check for aspiration during the latest reflux flare-up so need to to wait the results now in the post. Letterbox, you will become my new friend.

Talking of letterboxes, one letter plopped through this afternoon. A surprise letter about the previous MRI-which had been a disaster and one I was told there were no results from that would be any use and would need repeating. So to receive some results, was a shock. There must have been an image generated that the neurodisability paediatrician could read. It did cross my mind that there was a mix up, but we have not had an MRI before, only the two cranial ultrasounds performed in NICU. The letter read "surprisingly, there are no structural abnormalities. We will discuss further in clinic". It makes me a little nervous that even our development consultant was "surprised". He was clearly expecting something, I was expecting something, pretty much all the doctors we have seen over the last nearly 18 months have expected that something would show up. So I should, in theory, be dancing on the ceiling. No bleeds, no PVL, no lesions. All in all, pretty excellent. But all I can think is, so what the bleeding hell is causing/caused cerebral palsy? Where, are my promised answers? So many things have been chalked up to something we will never know, is this yet, another? Her history frankly suggests that at some point there has been brain trauma. It doesn't help there is no existing antenatal records, but birth and subsequent events are a hotbed for being able to pick things and say, maybe that. An MRI was going to tell me. To pinpoint. To flag up. To answer my questions. It has just generated more. For CP and spasticity there is something somewhere. But not on this MRI. 10-16% of children with CP have normal MRI findings. Maybe I just have to accept that this is us. An MRI reflects the structure of the brain, not function. I just can't help feeling a bit cheated and full of questions to ask. Does this affect the prognosis, the treatment, the diagnosis? Does this warrant extra tests? Do we need to look at genetics, blood tests, anything else? I have a month until clinic. By NHS standards, a month is not too bad. But it is going to be a long month.

So tonight I feel exhausted. It feels a full on day. I am fed up with dealing with things on my own. Sometimes, just sometimes, I wish someone would make me a cup of  wine  coffee and hold me while I toss and turn all night and tell me it will all be ok. 

I am really fed up of seeing my beautiful mischievous daughter love life with all open arms and for life to not always love her back but deal card after card of yet another thing. It seems relentless. 

Less than two hours until Tuesday. Let it be a more uplifting day.

Sticking like Glue

The other day I wrote about my sleeping arrangements and my fear of being far from my daughter at night. 

I like to think I'm going to be a cool mum, but I'm having to face up to facts.

I am terrified of being apart from her.

It's not a desperation to apart exactly, more like a terror that something awful will happen and a completely irrational feeling of betrayal. She would be fine, after all, I worked 3 days a week between when she was 8 months and about 21 months. She is now more reluctant to part but is such a sociable thing. It's me.

I thought I had put Neonatal and everything that followed behind me. I received excellent counselling until very recently, took a course of Sertaline (a SSRI anti-depressant also used for anxiety and in my case PTSD) and then unfortunately this summer happened and we got a feeding tube, starting diagnosis and reunited with some of the PICU consultants although thankfully avoided their unit by the skin of our teeth. Right now, two years ago, Wriggles was in NICU and this anniversary period is a funny old time. Full of flashbacks and bittersweet pride. Sometimes I think I over exaggerate the past, and then find a scrap of something from the time and it hits me again like a ton of bricks. She was that small. She was that sick.This lunchtime I was looking at her first nappy size given to me by special care when we left. I was shocked how small it was, fitting in the palm of my hand. I remember her looking dwarfed in it. Curled up in a special nest in an incubator, small, so small, with a huge chunk of machinery attached breathing for her. Then a little white hat keeping the CPAP apparatus on so she could breathe with some help. The feeding tube in for weeks and weeks because she was gestationally too young to have developed the suck/swallow reflex. The weeks and weeks of one cuddle a day, at 3pm sometimes for less than fifteen minutes. Oh god.

When I went back to work, I made myself because as a single parent I felt I had a duty to provide as best as I could and also not to conform to stereotypes. I did enjoy aspects of my job, but after giving birth so much felt like clock watching. There were days I loved and days I hated. The worst bit every morning was saying goodbye at the childminder's. I never dawdled leaving the office, but pelted back as soon as I could. Since being made redundant, Wriggles' needs are arguably a little more complex. Aside from the feeding tube there is a greater understanding of why she gets so poorly, which in itself comes with more caution to be exercised. 

Since she was rushed to hospital late July, we have not been separated for longer than half an hour on a sparse handful of occasions. 

This weekend, I was supposed to be travelling for a weekend away probably involving some babysitting.

This evening I broke down and admitted how scared I am of loosing some control and not being within running distance of my daughter. I have not had a panic attack for a long time, but I sat here, dizzy, tears streaming, my heart racing and my throat tight and painful. It's too soon. 

My worry is, when won't be too soon? She is now 2 and it's not like we're going to be able to forget prematurity or hospital visits for a long time, such are her medical conditions and health. I don't want to become a paranoid overbearing parent, embarrassingly clinging to her trouser leg in the playground. I want her to keep her independent streak that makes her so her and that I cherish for her beautiful personality of her own shining through. I'm going to have to let go in small amounts at some time in the not too distant future, for nursery, then school and my eventual return to work. I'm going to have to trust other people to do their best by her, to learn her cues, to know her danger signs, her quirks, her needs. But not yet, not now. She is still my baby and I am still cocooned in the after-effects of scare after scare. I need to build myself up gradually and look back out into the light. 

I just hope these needs of mine don't step on her needs of finding out about the world without me.

Mixed Feelings

This week several things happened which I have very mixed emotions about. None of them are huge things and were all things I either half-expected or knew was going to happen.

Following a letter from the council telling me that in line with new government regulations my rent would be going up nearly £10 a week which is quite a lot in my budget, I have caved in and applied for some housing benefit. Although my flat is privately owned, it is council managed. The rent between two people would be quite reasonable, but as I am only one and not on a huge wage, any increases are more than usually unwelcome. I have thought about it on and off since Wriggles was born and I knew I would be a single parent, but with working part-time and topping up with tax credits, I have been proud that so far I have been able to manage and cover it all. It made me feel more independent and that I was doing something good for my family. With an increase though and none in my wages, it is just too tight and I need some help until Wriggles is older and I can work more. At present even if I took on extra hours, the cost of childcare will render these useless especially with no local family to soak up babysitting duties. Plus I would be (more) shattered. Although I'm relieved to have such a system available when people do just need a helping hand, I wish it wasn't me having to use it. I know it's not forever, it just feels like falling into another stereotype.

When I got back from doing this at the library, I found a letter I have been expecting since October. It is Wriggles' referral to Speech and Language, announcing a home visit in just under a fortnight.