Tag Archives: premature baby

First Small (supported and awkward, but who cares?) Steps

These feet were made for walking, and that's just what they'll do

These feet were made for walking, and that’s just what they’ll do

Last night I had a variation on a recurring dream. Boo was smiling at me (he always smiles in my dreams as he invariably does in life). And then he nonchalantly clapped his hands. I cried tears of joy. I woke up with damp eyes. I have dreams like this (in which Boo runs up to me in the local park arms outstretched or, weirdest of all, Boo crawling as a 29-week 3lbs 11oz prem baby in his incubator) at least once a week. And I love these dreams (OK, not the incubator one: that freaked me out). You see these dreams give me a glimpse of a life I want for Boo. That if I see it, even if only in my sleep, I dare to believe might actually come to be. But I admit, it’s hard not to get a little down when I wake and those sleepy tears of joy turn into the quiet sobbing of regret. When I remember that he can’t do those things and, if I allow myself to be honest, that he may never be able to do some of them. Ever.

For those of you who might not know the indomitable and gorgeous Boo (you should, he’s amazing) here are some things to know. Boo probably has quadriplegic cerebral palsy after sustaining a significant bilateral brain bleed at 3 days old (he was born 11 weeks early) when he contracted meningitis. We are awaiting the test results to confirm that tentative diagnosis. He also developed a form of epilepsy (infantile spasms) at Christmas which can cause physical and cognitive regression. Although the seizures are under control they can return and the damage may already be done. At nearly 15 months (or 12 months corrected) he can’t sit independently for more than a few seconds and his trunk control is not great. He has dynamic arm tone (so the tone varies from the normal to high or spastic) which means he can’t manipulate or reach for objects with ease (although he does do both in his own energetic Boo-like fashion). He can’t crawl and likely never will. He can’t roll either.

He gets quite frustrated, as you can imagine. But he is also one heck of a determined chap. His developmental progress is glacial but every step in the right direction is huge, I tell you. Nothing comes naturally to him. So when he opens his hands, uses a pop up toy, gains arm function in sitting or rotates a bit on his side I feel pride to a degree most people (thankfully) can’t possibly imagine.

That’s why I am 120 percent behind this fabulous new fortnightly linky ‘Small Steps Amazing Achievements’ hosted by Ethan’s Escapades, and a lovely lady who knows just how I feel when these inchstones are reached. I hope to be a regular participant. (No pressure, Boo, but get with the programme, already.)

I’ve already blogged about some of Boo’s more recent achievements and wanted to write something new for today, Since Boo cooperated (thank you, young man) at his last physio appointment, I can.

It is with huge excitement that I can tell you that we’ve added a new exercise to our physio repertoire: supported stepping.

You see Boo doesn’t do things in the right order. We can’t wait for him to sit (as you would with a neurotypical child) before moving on to more advanced skills. Of course it would help enormously if he could sit, but the wait for him to perfect that skill could take some months yet. And although physically they won’t put Boo past the 8 month mark because of this, cognitively he is a one-year-old and knows what he should be doing even is his body doesn’t always do what he wants it to do. He bears weight enthusiastically. He wants to stand. He wants to walk.

So when his fabulous physio said ‘Shall we try some walking, Boo?’ He smiled and my heart stopped. Of course his trunk control isn’t good enough for him to walk with us holding his hands as we did with his big sister when she was 11 months. Instead, the physio had to put her hands under his arms and encourage him to elongate one side and transfer his weight to the other.

But you know what? He did it. He bloody well did it! He lifted his leg, not a little but a lot, and he grinned like you have never seen anyone grin about anything. The tone in his legs kicked in and his legs came inwards but as the physio said, we can work on that. He kept going for about a metre for what were some of the happiest moments of my life.

You see these steps were not just an amazing physical achievement. To me they were a symbol of his determination, of how far he’d come. And although they don’t signal anything much in a predicative sense (who knows if he will ever walk unaided) they offered me something that (optimistic though I try to be) I badly needed that particular day. Hope. Hope that his future is brighter than I could dare imagine on our toughest days.

Small steps. Big deal. And this time, I wasn’t dreaming. I know. Because I pinched myself. Just to be sure.

Ethans Escapades

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You know you’re a Premmie/SEN parent when…

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…you have more medical appointments in a week than hot meals.

…the guy who runs the hospital car park occasionally lets you park for free because he is worried about your bank balance.

…you can direct lost visitors to parts of the hospital people on reception have never even heard of.

…you are pleased your favourite syringe made it into the steriliser and is ready for use.

…you have a favourite syringe.

…you don’t just know how many mls of each medicine your child has daily but can convert it to mgs without thinking.

…you can say things like periventricular leukomalacia without tripping over a syllable or breaking into a sweat.

…you are mistaken for a paediatric consultant (this has happened to me: three times in two different hospitals).

…you can speak almost entirely in acronyms (PVL, IS, GDD, IVH, PDA, NEC, CLD, SEN, IEP).

…you use the term inchstones rather than milestones.

…you stop using the word normal (even with air quotes) entirely and say typical.

…6 hours sleep feels like winning the lottery.

…you can parrot huge chunks of ‘Welcome to Holland’.

…you don’t see a child with disabilities and think what’s wrong with them but notice their amazing smile or beautiful face or how funny they are.

…you see what a child can do and not what they can’t.

…you are pleased when dressing or undressing your child becomes a wrestling match because it shows they have the muscular and mental strength to fend you off (see Exhibit A below and I hope he’s not intentionally flipping me the V, by the way).

…the smallest thing (the opening of a hand, the mouthing of a word, an act of mimicry) can make you happier than you ever imagined possible.

…you are utterly floored when your child tries to wave at you for the first time in their life and nonchalantly transfers an object from one hand to another as if they’d being doing it all their lives. Both of these things happened today, and yes, I am writing this post with tears of joy in my eyes.

…despite all the heartache and anxiety you feel lucky and grateful every damn day.

I would love for you to add your own ‘Whens’ to this list. Please use the comments box below. I love to hear from you!Image

Welcome to Premmieland: Where Little Things are a Big Deal

Let me let you in on a secret. I’m someone who makes mountains out of molehills. Small beans are almost always a big deal to me. It’s just how I am, but it’s something I’ve often been criticised for, mostly by kind folks who are trying to get me to stop worrying about the small stuff and see the bigger picture so I can go a bit easier on myself. It’s something I tried to cure myself of while pregnant  with Mr Boo. I wanted to be better able to put things into perspective before he arrived and inevitably made life more chaotic, as any new child does. (Little did I know…) But now I think I’m a completely hopeless case. I’ve just come to the conclusion that I see the world in a particular kind of way and my radar is too sensitive a lot of the time.

I’ve mentioned before how having a premature baby does very odd things to your sense of time. I was reminded today that it alters your sense of perspective in other ways too. You see, in Premmieland tiny things are a big deal. Quite literally. Our little ones make a big impact on our lives. In the early days (and for some, for many months afterwards) grams or ounces take on a huge significance and minuscule reductions in the amount of oxygen helping our babies to breathe takes a hefty weight from our shoulders.

It works the other way too, of course. Little things can shatter our biggest hopes and dreams. An almost imperceptible flickering of Mr Boo’s foot, for instance, signalled the onset of ankle clonus that first made me believe that he probably would have cerebral palsy given what else we knew about his medical history. And then the little hiccups that started at Christmas landed us with a diagnosis of a ‘catastrophic’ epilepsy, infantile spasms.

Now life is thankfully (mostly, fingers crossed) on a more even keel. But the little things still matter hugely and usually in a good way.

Like today. Mr Boo had his routine fortnightly physio. I wasn’t holding my breath about it, to be frank. He hadn’t slept well last night and was really grouchy when we got to the hospital. I thought, great: this is going to be yet another appointment where I say, ‘He does this better at home, honest, he’s just out of sorts’. But I didn’t have to. It was quite a shock.

The physio got out a new toy, you know one of those ones where you push, twist or punch buttons to get animals to pop up and then you push the animals back down again and the fun starts from scratch. Let me tell you, this is a really challenging object for Mr Boo. The dynamic tone in his arms (intermittent stiffness made worse by exertion) coupled with his difficulties in opening his hands makes working a toy like this about as tricky as it would be for me to juggle four balls. While jumping on a pogo stick. On a tightrope. Without a safety net. While desperate for the loo.

So when Mr Boo pushed a button, grabbed the animal that popped up and then pushed it back down again, all while in a sitting position (when he has much less trunk and arm control) our jaws dropped. The physio looked at me quizzically. We didn’t speak but I knew what she was thinking: ‘Didn’t expect that, but let’s not get too excited just yet. It might be a fluke’. I was thinking the same. But it wasn’t a fluke. He did it again and again. OK his arm movements were far from gainly and his hands were a little more fisted than we’d like, but this bit of play, an activity his older sister could do without effort so many months earlier than him, is HUGE.

I felt like I did when Sissyboo took her first steps at roughly the age Mr Boo is now. That day may or may not come for him. But I know there will be other days like this. And I’ll take them gladly.

That was no molehill we hopped over this morning. We scaled a mountain. And I’m dizzy from high altitude and pride. So much pride. Go Boo!

Good News Friday #6

I had fully expected to tell you in the (really-how-can-that-be?) 6th Good News Friday that my good news was that Mr Boo had been discharged from one of the gazillion clinics he attends and that I had got my work mojo back and was a model of professional efficiency. But none of that happened. Instead, I spent most of the week 1) getting mad about Collin Brewer (enough said by me about him this week on the blog and on Twitter, so I’ll spare you), 2) moved by the amazing blogs and tweets about International Kangaroo Care Awareness Day on Wednesday, 3) taking Mr Boo’s glasses out of his mouth, and 4) working until the middle of the night most nights to make up for time spent getting mad, moved and reuniting Mr Boo’s glasses with his ears when I should have been concentrating harder on the stuff that pays the bills. But there has been good news and this is the main one, for me: Mr Boo got his MMR immunisation. Now I know it might seem odd to be pleased that your child be turned into a pin cushion. But I cannot express the depth of relief and even pleasure I feel about this. For one thing, I’m just thrilled he could have it. By rights, Mr Boo should have had the injection at the beginning of April at 12 months corrected age. And being a ex-premature baby and a vulnerable one because of his ongoing health problems, this was even more important than it would have been had he been born well and at term. It was even more important still, though, because Mr Boo was put on high-dose steroids for his infantile spasms from late December until early February. (To give you an idea, he was on roughly twice the dose an adult with severe arthritis or chronic asthma might be given). This was good for the spasms but greatly compromised his already fragile immune system, as we can tell by the constant stream of nasty bugs he’s had since January (he was remarkably cough, cold, bug free before then). His epilepsy consultant told us when he was put on the steroids that if he came into contant with chicken pox, mumps or measles for three months (yes, three months) after he’d finished the steroid course, we had to get him admitted to hospital immediately. These childhood illnesses could kill him. No chicken pox parties for us then! But, and here’s another killer, the steroids that made him so vulnerable to these infections also meant he couldn’t receive any live vaccines. So, no MMR until 6 weeks after the date he should have received it. With the recent measles outbreak in the UK, I have been so worried that Mr Boo would come into contact with the infection before getting the jabs. I was worried that the ill-informed choices of others could lead to my baby’s death. I know that sounds harsh, but I am unapologetic. Babies should be vaccinated. It is not just for your own children that immunisations are important. We didn’t have a choice. My baby could have died. Getting Mr Boo vaccinated signalled the end (we hope, please, pretty please) of the steroid era and hopefully that he’s on the way to better health. My shoulders have rested half an inch lower since he had the injections. Good news, indeed. As always, if you have any good news, whether you are the parent, a parent of an ex-premature baby or of a child with additional needs, I’d love to hear your good news in the comments section here or on Twitter. Mostly, though, I just hope you have all had some good news this week!

Good News Friday #3

How on earth did it get to be Friday again? This week has been a blur of form filling, work (even though I’m not yet technically back), writing blog posts I hadn’t meant to write, not writing ones I’d planned, oh and appointments. How could I forget the appointments?

So, time to pause. To reflect. To remember the good stuff and try to hold onto it when things get tough. (We’re seeing a neurologist next week for the first time. It’s going to be tough.) But we have lots to celebrate too.

So here goes and please, if you have good news to share about your little ones do write in the comments box. It really lifts my spirits!

Mr Boo’s physio appointment this week was a jolly affair. Apart from being completely uncooperative when expected to demonstrate his tentative commando crawl attempts (he really has perfected the I’m-not-a-performing-seal look), he did well. He is getting slowly closer to independent sitting and did some great weight bearing. For the first time we tried to get him to pull up to stand with some trunk support. I nearly cried. He was so happy at seeing the world from on high and laughed loud and long from his belly. And I loved seeing him upright. It gives me hope that one day he might be able to view the world like this for good. Maybe with an aid. Maybe not. Whatever: it was a wonderful sight.

My Homestart volunteer came round on Tuesday as she does every week for a couple of hours. This time she was bearing gifts. Mr Boo really needs his sleep but fights it like a tiger who’s just realised his keeper needs to sedate him to clean his teeth. It’s not pretty. I have the scratches to prove it. So does M, our volunteer. So she bought Mr Boo a lovely, soothing lullaby playing cuddly sea horse that had belonged to her grandson. She also bought me the number of a lovely lady who’s going to give our DLA application the once over before sending it off. I want to write a dedicated post about Homestart one day because they are amazing. Amazing! Today I just want to say, thanks M. We are so grateful for your can-do, understanding and non-judgemental friendship. It took me a long time to admit we needed help. I am so grateful it came in the form of you.

I was invited to take Mr Boo into Sissyboo’s school this week. Reception are learning about babies and have a baby clinic in their role play area. I talked a bit and answered questions. I think I got away with the, how do you know if your baby is a boy or girl when they’re born question. Just. But mostly I sat back and watched in awe as Sissyboo talked with a confidence it’s hard for her to muster, as well as a heartfelt joy and palpable sense of pride in her miraculous little brother who came early. He is so lucky to have her for his big sister.

Finally, portage starts today. I am so excited about this new (for us) therapy. Hopefully portage will be in our good news next week too.

OK. So how about you?

A Tale of Two Nicus: Part I

OK, so where was I before I got distracted? Oh yes: in the NICU.

How could I forget? It’s not like I’ve really left there. I can still hear the bings, bongs and high-pitched screams of the monitors when I close my eyes, see the waves of respiratory rate ebb and flow, and most of all, I can smell it, that simultaneously hygienic and nauseating smell of hand soap. I sometimes wonder if I’ll ever leave that place or more accurately those places. For ours is a tale of two NICUs.

Seeing Mr Boo for the first time was amazing. He was small (although at 3lbs 11oz at 29 weeks, not that small), but he was perfect in my eyes. I was elated and couldn’t believe how I’d spent much of the night before worrying I wouldn’t bond with him or that it couldn’t be possible to love him as much as his big sister.

I saw him and I adored him. Then I looked again and the love was polluted by a fear so intense it hurt. Both the love and the fear have only deepened since.

I honestly don’t think I saw the CPAP tube, the wires (so many wires) and cannulas that were helping to keep him alive when I first looked at him. I initially thought the woolly hat he was wearing was cute (it kind of was) until I saw it wasn’t designed to be aesthetically pleasing. The hat was keeping the breathing apparatus attached; there was a flap so they could scan his head. Little did I know how those scans were going to change our lives. He had no eyelashes and his body was covered in fine hair. And then I saw his skin and with horror realised I could almost see through it, or at least through those bits that weren’t black with bruising.

The lovely unit sister who I’d first met in the delivery suite the day before talked me through the various monitors and told me not to panic when the alarms went off. I couldn’t believe how something so unnatural and terrifying could be so normal to anyone, why alarms didn’t cause people to start determinedly running like in ER. (I later realised they sometimes did.) Then a consultant came over and explained that Mr Boo could participate in a trial treatment for preventing NEC. It was the first of many acronyms (CLD, PVL, IVH …) that I would have to get up to speed with during the crash course in neonatal physiology every NICU parent is put on. Crash course is right. Reality hit and my air bag wasn’t going off.

Everyone had told me Mr Boo was a marvel. He had no obvious health problems and despite arriving too quickly for steroids he’d got off the ventilator within 24 hours and was breathing with CPAP. He’d even managed several hours in air. And he was an unfeasible size for a 29-weeker. He was strong. But I now realised that he was also terribly vulnerable. He could succumb to NEC or any number of problems I was now googling between this day and that as-yet-unknown day, hopefully some time in the next 11 weeks, when he could come home.

I was shown around the NICU and tried to take it all in: the layout of the unit (milk kitchen, expressing room, family room), the rules on hand washing and visiting. I didn’t remember a thing. I went back to my private room and felt liked I’d been beaten up. (Why couldn’t I cry? Surely I was supposed to be crying.) Then a nurse came in with an expressing machine and I found out what I really needed to be doing. I was amazed that any colostrum emerged and was pitifully embarrassed by the 10mls produced after 20 minutes of pumping. But I’d read the Bliss leaflet and understood the benefits for Mr Boo and it made me feel good. There was something I could do for him after all. But it made me think about and miss Sissyboo too. The last time I’d used an expressing machine I was pumping in the vain hope of trying to get through the excruciating pain of thrush and breastfeed her beyond six weeks of age. I failed. I still felt guilty about putting her onto formula so young (why?) and even more guilty that I’d let her down again now by not carrying Mr Boo to term. By giving birth 65 miles from home.

And then she arrived with The Grumposaur and I was happy, wonderfully happy for the few minutes before I realised I needed to be in two places at once. I couldn’t be the mum I wanted to be to both of them. Not now. Not with Mr Boo in hospital in one county and Sissyboo at home in another. As I write this, they are asleep in the same house, just yards from one another, but I still feel the same sense of disappointment and suffocating regret that I can’t be there for both of them all the time in the way I’d like to be. I never (and I mean NEVER) feel like I do enough for Mr Boo to help his development no matter how many hours I spend in appointments or doing physio with him. So why do I feel I let Sissyboo down every (and I mean EVERY) day by not paying more attention to her needs and wants? By putting Mr Boo’s health first too often.

I had to make a decision. Go home to be with Sissyboo and The Grumposaur or stay to be with my baby. The Grumposaur thought it was a no-brainer. They needed me (they did and I needed them); Mr Boo needed doctors. The only thing I could do for him was to express and a quick trip to Tesco would mean I could do that anywhere. The nurses thought I should stay. They said I underestimated the physical and emotional effects of the last 24 hours at my peril. The Grumposaur asked if there was any medical reason why I couldn’t go home. I had nearly had to have a transfusion and I secretly hoped that this would mean that they would say I couldn’t leave, so I wouldn’t have to make the decision. But they said my iron levels were OK so it was up to me. I went home. There was no right or wrong thing to do. There wouldn’t be ever again, I thought.

So instead of commuting to work, I commuted every day for two hours to a hospital to see my son. My sister, who coincidentally had two weeks holiday at the time, moved in and helped us. She came with me to see Mr Boo after dropping Sissyboo at nursery the next day and she was amazed by how well he was doing. I was taught how to do cares (wash, change and touch a baby in an incubator without dusturbing the wires or upsetting them when they were too young to want physical contact). It was just about bearable as far as anything so unnatural could be. I couldn’t remember that I wasn’t still pregnant, though, and turned down offers of cups of coffee and a medicinal Guinness because I didn’t want to harm the baby in my womb. I felt slightly mad. But it was bearable.

And then it wasn’t any more. On day 3 I was looking forward to cuddling Mr Boo for the first time. Instead, everyone had stopped smiling. We were told he had an infection and his infection count was dangerously high. He had to be reintubated. He was unable to accept feeds and was losing weight. A long line to deliver TPN (artificial nutrition) had to be inserted in his leg. He wasn’t responding to antibiotics. They needed to do a lumbar puncture. They wanted another brain scan, although the first had been normal.

He was very ill. You would think there wouldn’t be much difference between a relatively healthy and an unwell prem baby of Mr Boo’s gestation. They just lie there, after all. But it was palpable just how sick he was and for the first time since this nightmare began I truly understood that he could die. I hadn’t allowed myself to think this before. Why hadn’t it occurred to me?

It was Easter weekend and we tried to coordinate hospital visits with fun trips out with Sissyboo. Wherever I was I felt that I should be somewhere else. And then the bottom fell out of our world.

The sensitivity test came back. The sample had been contaminated so they couldn’t be certain, but it was likely he had contracted meningitis. He needed a platelet transfusion and was now being given a high dose of targeted antibiotics. It didn’t necessarily mean anything for Mr Boo’s long-term future, we were told. (How many times have we been told that in different situations since?) As a prem baby he would be followed up carefully anyway, so the problems the meningitis might cause would be picked up. But there was more bad news. He’d had a bilateral brain bleed. Hopefully it would resolve. If not, it could mean brain damage, developmental delay, cognitive and physical disabilites or cerebral palsy. We just had to wait and see. (How many times have we heard that since?)

I cannot describe the agony and desperation I experienced. I felt even more helpless than I had at any point since his birth. He nearly died. I left the NICU each day not knowing if he’d still be alive when I went back the next. But then, as quickly as he succumbed to the infection, he picked up. Within days of having targeted antibiotics his infection count was plummeting. He looked better. He was starting to tolerate minute quantities of milk. The long line in his leg might be coming out soon. He was back on CPAP. They might be able to transfer him to a hospital nearer home.

I got to cuddle him. Finally. The day I never thought would come. The combination of excitement and fear was dizzying. What if I disrupted a wire or tube? What if he didn’t want to be held? What if the alarms went off? They didn’t. He was fine. It felt wonderful. Sissyboo held his hand.

In the relay of the relatives, my sister passed the baton on to my mum who came to stay for a week while The Grumposaur went away with work for 7 days. It was supposed to be the last trip he made before I started maternity leave two months later. I know he didn’t want to go. I know he hadn’t wanted to work and leave me to drive down to the NICU to see Mr Boo on my own as he had so many days since the birth. I know self-employed people don’t get compassionate or parental leave. I know it makes me awful, but I couldn’t help feeling resentful. I still do. Thank God Mr Boo was getting better. I couldn’t have coped at all if he hadn’t been.

I started to forget about the brain bleeds. I focused on Mr Boo’s improvement and having cuddles with my boy. Two weeks after he was born things were looking up. On the day he started a cycle of 6 hours of CPAP and 6 hours in air I got home from the NICU feeling more positive than I had done for what felt like months. And then I got a phone call from the unit. He’d been a good boy, they said. (They always said that.) I wasn’t to worry. In fact he was so good they were going to transfer him to my local hospital 10 minutes away. An incubator was waiting for him in intensive care.

The transfer team was already on the way to get him. I couldn’t get back to the hospital in time to see him leave but they’d phone me when he was on his way. I felt sick, especially when they said they’d transfer him in air. I wanted to see him. I wanted to say goodbye to a bunch of people who had shown me more kindness than I knew existed. Mr Boo may have been ready to transfer, but I wasn’t. I phoned The Grumposaur and he was thrilled. This was a good thing. I agreed.

So why couldn’t I stop crying……?