A week of firsts

This week has been a week of several firsts, some for G, some for me. Some causing immense happiness, others causing misery for little moo...

Gracie's first cold

On Wednesday G just would not settle. Day times are usually her happiest, but not this time. She was grizzly, hungry and nothing would settle her. One car ride later, and we thought we'd cracked it, it was 9pm and she had dozed off. Then I heard a sound on the baby monitor that made me want to investigate. After taking a leisurely stroll up to the bedroom, I found G choking in her Moses basket. After several slaps on the back, and several more choking episodes, I found the culprit. Snot, and plenty of it. G had developed her first cold.
This night become another first....the first time we had ever ventured out in the car beyond the evening, in to the realms of the night. It was midnight, and we were heading for the M1! It was also the first night that we really did have no sleep...the odd wink here and there, but that was all. How Tim made it though work the next day I don't know.
G is starting to get over her cold, and I have every baby cold relieving item that I could lay my hands on. Snuffle babe vapour rub has to be my favourite (baby Vicks for those of you who are wondering). The smell takes me back to my childhood :)
I might add that choking is not uncommon for her, it's more of a regular occurrence, but we know how to deal with it. It doesn't make it any nicer to see or deal with, but it seems to be yet another symptom of her reflux.

Sleeping though the night

Last night, for the first time in her little 12 week existence, G slept through the night! 9:15pm until 6am. For any parent reading this, you will no doubt be remembering your first time too, probably because it was the first decent nights sleep you'd had in months. I must admit I did wake briefly in the night, slightly bemused at the fact that I hadn't heard her little screams for milk, but after hearing her breathing peacefully I fell back to sleep.
I don't expect that this will happen every night, but I know that she can do it. And to be quite honest, the amazing 7 hours of sleep that I had is enough to get me through the next 12 weeks..... Well, the weekend maybe!

First bath by mummy (without daddy's help!)

Caution, Slippery when wet.... A warning that should come with all babies! Up until this week I'd always wait until Tim was around to bath G. However this week G decided to treat me to several explosions, most of which required immediate bathing. So I thought 'man up Rach, it can't be that hard'. It wasn't. Ok she wriggled and squirmed, squealed with delight, and screamed when she'd had enough, but it was ok. The fact that she smelled like a Johnsons baby factory afterwards made it all the more worth it.

Back in the car again? 

I had mentioned venturing out in the car, and you may be thinking 'but what about the mamaroo?!' After our initial delight at this fantastic contraption working, we found that Gracie would only settle in the mamaroo for a short time. Once in the full throws of her screaming fit, it no longer had effect.
Put her in before she starts? We've tried, but sooner or later the screaming fit does come. It does however buy us enough time to cook, and usually eat our dinner. For that I am thankful!
So many people have been kind enough to tell us ways that have helped to soothe and settle their little ones, and we've been been more than happy, enthusiastic even, to try every suggestion. But they just don't seem to cut it. A real life car ride is the only thing that works for her. Either we need to get her meds and formula altered soon, or she needs to grow out of these reflux and milk issues. Poor little monkey must be fed up of the pain!

In support of Gracie and the Turner Syndrome Society

This time next week my little brother will be taking part in his first ever triathlon in aid of Turner Syndrome Support Society. He is very close to reaching his £500 goal, and we are all really proud of him and how he wants to support his little niece. The race is pretty local to us, so Gracie is looking forward to cheering him on!

What does this week have in store?

Gracie has her second lot of jabs, another hospital appointment which apparently is for an echo, and hopefully a conversation (or even an appointment) with the paediatrician to discuss her current treatments for her reflux and milk intolerance. The current provision is having no effect whatsoever. I have also had a letter through to make our first appointment with the dietician regarding the milk issues. Aside from the medical stuff, we are going to enjoy bank holiday with Winston and daddy (sunshine please!), and have more coffee and cake with friends. It's a good job I've started going to the gym, at this rate I'll be growing a cake baby!!

It's a good job that Gracie, daddy and Winston are snoozing their heads off beside me right now, I've enjoyed a lovely brew, and keeping you guys updated :)

Heart scan results

11 weeks old and changing every day!

Heart scan

Finally the day of the scan had arrived. I was a tad nervous, but knowing how well the scans had gone during pregnancy, I had faith that all would be ok.

We were very much looking forward to seeing Dr Archer again, and this time we didn't have to travel down to Oxford. One less petrol cost!! Upon arrival we noticed that it said 'Dr Archarya's clinic on our letter, and we started to wonder whether she'd be having her heart scan at all. Thankfully, a few moments later we saw the familiar face of Dr Archer, and realised it must have been a typo!  Despite the cold gel and having an unfamiliar face looming over her, G was extremely well behaved during her scan. Her aorta had not narrowed (a potential complication in Turner syndrome), and all else was well. 

She does have a small leakage of blood between two chambers, but this apparently can be quite normal in newborns.  Given that he doesn't want to see her again until she is 1, we weren't about to start worrying.

No more driving....

She's stopped screaming in the evenings? Not exactly, but we are hoping to spend less time in the car due to a fantastic contraption that has been loaned to us. We trialled the mamaroo last night,and so far so good! Basically it is a seat that is supposed to simulate a car ride (along with a few other motions such as a kangaroo!). It kept G settled for around an hour, and allowed her to become sleepy enough to be put in her Moses basket afterwards with NO screaming....I know, hard to believe.

Her reflux still plays her up in the evening-we can often see and hear her chomping on the acid-but for some reason a car ride is still the only thing that will settle her.

Anyhow, we hope the novelty of this contraption does not wear off as we're quite excited at the prospect of enjoying evenings at home again :) 

A day with nanny and grandad

We were lucky enough to be invited to our friends wedding in Bath this weekend. Whilst babies were invited, we felt that it would be better to leave G at home with family. 

It was a beautiful day, and the happy couple looked amazing, but towards the end of the day I had started to get anxious and felt the need to come home. After enjoying a delicious meal, we decided to make the two and a half hour journey back.

Apparently G had been as good as gold and had several trips out (including to Cafe Nero), though come 5pm the screaming started! Mum and dad had hoped that a long walk with the dog would settle her enough-we know it doesn't-but low and behold, the screaming started as soon as the walk ended. We returned home around 9:30pm to find that they had resorted to driving up the A14 to settle her. What a little monkey!!

Normal baby things

G is developing well, and on a recent visit, the health visitor commented on how well she is doing. She is holding her head up (with the occasional flop!), smiling away, cooing, and very much enjoying the fact that she has discovered her fists. 

We like to keep busy during the days whilst Tim is at work, so attend regular baby groups, and the occasional coffee and cake session with my 'mummy' friends. 

It is really easy to forget that G has Turner Syndrome. She is doing so well. Apart from the reflux and cows milk intolerance (both of which we hope that she will grow out of), she appears to have no further complications at the moment.

Growth

We do need to start thinking about the issue of growth hormones over the next 6 months or so. Our geneticist informed us that G can start these as early as 18 months, and it is something that we are extremely interested in. We want to give her every possibly chance of growing as tall as possible (which in the case of somebody with TS, is around 5ft max with the help of hormones). That aside, we have very little else to think about over the coming year, except possibly teething and crawling! 

Here is a picture of how well the mamaroo soothed Gracie last night...

Things they never told me about being a mum......

I've learnt a lot these past 9 weeks, and there is still a wealth of things that I need to learn. Here is a snapshot of the things I wish I'd been prepared for....

Babies cry...

.....for hours on end, and there is nothing you can do to soothe them. Granted, not all babies do, but mine does. Her reflux and cows milk intolerance plays havoc with her poor little body, and the days of 4/5 hours screaming constantly, are still not behind us. The new milk and medicines haven't quite kicked in yet, and we are unsure of if they will, or whether she'll need to have them changed.

Increased petrol costs

The only thing that gives us a break from Gs  screaming is the car. We are spending hours on end, most nights, driving around just to settle her and catch a breather ourselves. Last night we found ourself going out twice, and ending up heading for the motorway. We have had more drive thru dinners than we can count. Not such a bad thing, said my sister? Yes, I just want a normal dinner at my dinning table. I even want vegetables! And those of you who know Tim would be shocked that he is now sick of KFC :)

Battling with GPs

Some (but not all) GPs think that I'm an over anxious first time mother. I have had endless phone calls and visits to the surgery reception, trying to get the formula and medicine that the Paediatrican had prescribed for my baby. The current battle is to get her stuff on a repeat prescription so that we don't risk running out, and that I'm not constantly speaking to different Gps and receptionists pleading for another batch of her meds and formula.
The one GP who has been fab, probably because she used to be a paediatrician and also knows about Turner syndrome, is about to start maternity leave. Rubbish or what?!

One solution often causes another problem

The new hypoallergenic formula is causing G to be sick left right and centre. It's so thin and watery that its like heaven to her reflux-one small burp, hiccup, or even a tiny movement, and G, me and often the floor are covered in sick. I'm now on a mission to get hold of a natural milk thickener to try and combat this problem. The GP told me to give her gaviscon. It constipated her, so no. He told me to experiment with quantities. Seriously, everything feels like an experiment right now, and I'm crap at science!

Just because one problem is diagnosed, doesn't mean that other unrelated problems won't occur

We were as prepared as possible for the potential difficulties relating to Turner syndrome. What we weren't prepared for, was difficulties that weren't! Saying that, general digestive problems are more common in TS girls, so I guess I'm wrong to say they are totally unrelated. Still, reflux and a cows milk intolerance weren't on the cards, and little did we know that they could cause sooo much pain for our little one.

You can feel so low, yet love your little one so much

This past week has been the hardest yet. Introducing the new milk was a challenge in itself. She hated the stuff, and I've tasted it and don't blame her! I also had a battle with the pharmacist to get her ranitidine medicine for her reflux as apparently is ridiculously expensive. He even wrapped it in bubble wrap incase I dropped it. I battled to get it, I wasn't about to smash it on the floor....
Some days I'd love to drop her off to anyone who'd have her, and go out and pretend I didn't have a care in the world. I could cry all day and night. Post natal depression? No, I just have an extremely difficult baby (not of her own fault, I know) and everything at the moment is a daily battle. We will have a happy baby eventually, and I will not dread the days, or more so the evenings, and Tim won't need to bundle us all in the car to Save our sanity. Tim as always is still amazing, but some days he sees the battle we have, and it even gets to him.

Don't get me wrong, our little one is our miracle, and we will always love her to the moon and back. Her gorgeous smiles erase any trace of the difficulties we face. Sometimes it's just hard. This morning I was vomited on, followed by a massive gorgeous grin. She's a monkey, but she's our beautiful little monkey.