Sitting for the first time at six months corrected!

At least once a month I write a post about Talia’s development, or lack thereof, and some days it has been a struggle to stay positive when her milestones are delayed. So I am very pleased to announce that this month, we have made progress.Sitting in a box

Following a recommendation from the hospital physiotherapists, we have been putting more time into helping Talia sit. I started by sitting her up in a sturdy cardboard box, and more recently bought her a second-hand Bumbo seat, from where she can watch me hanging out laundry or pottering in the kitchen. I wedge her between cushions, toys and my legs, so that she can sit up and play without any fear of hurting herself when her balance fails and she pitches sideways or backwards. Or occasionally forewards, her head curving in a slow and graceful arc which ends as she kisses the carpet.

Sitting by herselfUp until last night, Talia always needed the support of an adult finger in her hand, or a leg behind the small of her back. Then, we noticed that she seemed to be leaning forward almost confidently, and we moved back, leaving space behind her. And she stayed sitting! She played with her toys, waved her arms around and generally behaved like someone who has been sitting for months, not minutes.

My husband and I were as excited as if Christmas had come already. I grabbed my camera and took a dozen or so photos – most of which were blurred due to Talia waving her arms or moving her head. Maybe she was doing a happy dance too!

Today Talia is exactly nine months old, six months corrected. Halfway through one of the most amazing developmental years of her life, and we are as proud as parents can be.

18 Month Assessment For Premature Baby

When we were visiting Ronan’s paedatrician last week he reminded me that i had to fill out an 18 month assessment form. The form wasn’t to be filled out until Ronan reached 18 months (corrected) because otherwise the assessment wouldn’t have been fairly marked.

Whilst going through the questionaire and everytime i ticked “no” to the questions my fear of more delays reared. The questions were along the lines of;

  • When putting a crayon in your child’s hand and a piece of paper in front of them do they put the crayon tip on the paper (no – he tries to eat it)
  • Does your child try to offer their reflection in a mirror the toy they are holding (no – he smiles at himself then looks at me)
  • Does he use words put together BUT (not common words ie: no more, where’s dad, all gone), (they are the sort of things he says so maybe he doesn’t know how to speak!)
  • Does your child go and get a toy or object when told to (nope – he can’t even walk let alone go and get a toy for me but he did hand me my towel after a shower)

It will be interesting to see the results. Because of the lack of “yes” responses to the questions i am sure he will have to have speech therapy, brain therapy, child therapy ALL dam therapies because he is slow!! Whilst questionaires are great so professionals can assess where a child is, being a parent of an ex premature baby i am now worried about there being a major problem. One thing with a questionaire is that it asks the questions about things your child should be doing but it doesn’t cover questions of what they actually are doing so whilst you may feel that your child is ahead in some things i now feel that Ronan is far more behind than the average 18 month old so the stress and worry has kicked in again. I wonder if premmie parents ever get a break from worrying?

My Lil Premmie Finally Walked

After countless hours and months of frustration my little man walked.

We have had a long and hard battle with Ronan when it comes to his milestone delays. At 6 months corrected we were told that he needed physiotherapy. This really upset me and i felt the guilt flood back to when he was born prematurely. The guilt of Ronan being born so early took quite a long time to get over so to now be told that our child was physically challenged really took the cake.

To see him roll, crawl, stand up were such proud moments for us even though they were very delayed. I know each parent is shocked, suprised and overjoyed when their full term babies reach a milestone, then you can only imagine the elation a parent of a premature baby must feel.

I am still in a state of disbelief but Ronan walked about 10 steps from the door to me last week. Ronan has been taking little “risks” by walking from lounge to lounge by taking 1 step without support so this is the first time he has ever taken the leap!! Talk about lets get in as many as we can in one go!! He was SO excited that he was giggling.

To come from an ex 27 week premature journey to finally seeing your toddler start making the move towards walking is an overpowering feeling. Hopefully in a few years to come we will be able to turn around and say “what milestone delay”?

Advised to start physiotherapy

Last Thursday we went to our monthly group physio appointment. The hospital run these sessions largely as a screening exercise to check that all their NICU graduates are progressing normally. It is also a good way to catch up with other mothers and babies, some of whom I met when Talia was in the NICU.

At each session, the staff deal with each baby in turn. We were one of the last to be seen, and I put Talia down on a mat and offered her some toys while we were waiting. She immediately started crying. I don’t know whether it is the lights or the smell or what, but she transforms from a placid, happy baby into a wailing, uncooperative mess every time we go. I also find these visits stressful, partly because of Talia’s reactions, and partly because it becomes ever clearer how far behind she is falling compared to babies of similar corrected age.

online support forum, premature babies, premature baby, premmie, twins, triplets, NICU, birth stories, galleries, physioThe first thing I am asked is “So, what does she do?” It’s a question that almost reduces me to tears, because I want to focus on the positives – how much she has grown recently, how much better she is sleeping, how her smile lights up the whole room, how she brings so much happiness to everyone who loves her.

But I know what sort of things they are asking about, and compared to the other babies there, she doesn’t do very much. She is 5.5 months corrected (8.5 months actual) and shows no signs of wanting to roll yet. She doesn’t automatically reach for and play with toys, or bring her hands together often, and she doesn’t play with her feet at all. To make it worse, she becomes so distressed in the physiotherapy room that I can’t even get her to show them how much better she is at tummy time these days.

In the back of my head there is always a nagging fear: what if there is a medical condition underlying her slow development? At Thursday’s session I am finally brave enough to ask this question to the physiotherapist. Thankfully she does not see any indications of cerebral palsy at this stage, but tells me she feels Talia would benefit from one-on-one sessions in addition to the group sessions, starting next month. As she explained it to me, without some assistance to develop her gross motor skills, at some point Talia will become frustrated because mentally she wants to progress but physically she is not capable.

Back home after the session, Talia returns to her calm, sunny disposition and waggles an arm at me in an unco-ordinated fashion, almost as if she is telling me to take it easy and not worry so much.

Hey, even Einstein was a late developer, and he turned out all right.

Making progress at 5 months corrected

Talia is 8 months old today (5 months corrected) and celebrated this event by eating/wearing her first ever spoonful of sweet potato. In fact, it’s her first ever spoonful of anything “solid”, as she has rejected my previous efforts to feed her farex and pear, with an expression that clearly says “Mum, if this stuff is so good then please eat it yourself! Now where is my bottle?”

I’ve spent plenty of time in the last five months worrying about her lack of progress, both in terms of weight and development (especially in comparison to other babies of her corrected age), so today I am trying to look at what she has achieved so far.

Firstly, at 5kg she is almost 6 times her birthweight of 855g, which is pretty impressive even if she is well below the bottom line on her weight chart. She is also well on the way to doubling her original length, from 34cm to 60cm, which puts her respectably on the 10th percentile curve. And she must have some brains developing in there, because her head circumference is nearly at the 50th percentile. Go little Miss Pipsqueak Brainbox!!

I know we are as biased as any parents, but she is a cute little munchkin, and even more fun to be around now that she smiles at every opportunity, and starts to giggle when we play “Round and round the garden” or when we aim kisses at her. She has a very placid personality and rarely cries, except when she is hungry and we are slow with her milk!

Talia at 5 months corrected (8 months actual)Her hands are delicate, and have recently learned how to shake a rattle and how to grasp a handful of cat fur. Her little feet can now bear her weight, and she stands proudly on them while we support her. We are excited about the little milestones which are still not automatic for her – for example when she brings her hands together, puts something in her mouth, or reaches out to touch her reflection. We know she is a wellspring of potential and we roll her from back to side to tummy and back again, so that she knows it can be done once she decides she wants to try it for herself.

Sitting in a cardboard box, she holds her head steady and turns carefully with big, serious eyes to watch us moving around her. You can almost see her taking things in, absorbing new ideas. It will probably seem like no time at all and I will look back on this blog and laugh, because it will be me sitting in wonder and Talia running around me.

In the mean time, I will do my best to stay positive as she lags behind her peers, and to enjoy the little successes which make every day special. Even the ones which involve cleaning up after sweet potato.

 

Prematurity on the Today program

Next week on the Today program they’re doing a piece on premature babies. The following is a letter I’ve sent in:

Dear Today,
My daughter Miss E was born prematurely on the 29th of March this year, at 26 week 3 days gestation–for a premmie those three days make a huge difference–she weighed 426 grams. I had preeclampsia which had caused her placenta to fail and resulted in “Intra Uterine Growth Retardation” and her tiny size. No one expected her to survive birth much less cry, but she did. She was born kicking and screaming, scoring an Apgar of 9 at both 1 and 5 minutes.

The trip down NICU lane has been a long, rough one for my little girl lasting five months–seven weeks were spent ventilated and a further seven on CPAP, in her first week her skin was so fragile that it wasn’t uncommon for us to find little tears and sores on her tiny body. During her first weeks she was so unstable that simply changing her nappy caused her heart rate and oxygen saturation levels to drop to a point where she would turn white or blue and it would take almost half an hour for her to recover. For this reason I didn’t get to hold her for the first time until she was six weeks old.

Like all premmies she has “Chronic Lung Disease” a condition in which damaged lung tissue causes breathing and health problems. This is partially due to her prematurity and partially due to her unavoidable ventilation. Her CLD means that we have to be careful to keep her away from potentially sick people and children under five. Up until recently this has meant no trips out of the house, we didn’t take her anywhere there’s likely to be crowds and if we did venture out we’d take her in her “Bubble”–her pram covered by the rain shield. This may seem strange, but 1/3 of all premmies are readmitted to hospital in their first year due to colds and flu. Many of them end up back on CPAP or worse, being ventilated. We still avoid most places.

For a little girl no one thought would survive she has done remarkably well. Though she’s small (she currently weighs 4.85kg/10lbs 11oz at 7.5 months or 3.5 months corrected) and we have problems with feeding and potential developmental delays down the track we have been incredibly lucky. We still face years of doctors’ visits and the increased possibility of things like autism, developmental delays and behavioral problems things could have been much, much worse. As one of her nurses said recently “she’s about as small as they come and survive”.

I was very excited when I heard Richard say you were doing a piece on premature babies because there’s a huge misconception out there that premmies are just babies who were born a bit early and a bit small but are other wise “normal”. While this is sometimes the case, it is more often not true. Even the ones born “just a little early” (30+ weeks gestation) still face the prospect of brain bleeds and lasting illnesses and disabilities related to their prematurity while others.

Thanks for your time,