Sunday, 21 June 2015

:: a smoother path ::

So much progress has happened over the last week that it feels as though it has been twice as long! Elea has been on Highflow with no problems for over a week now. Every couple of days they lower the pressure level. This morning she was put down to level 2, which is the point from which they start to take her off completely. Considering the fact that very often the little nasal prongs flick out of her nostrils and she doesn't seem to struggle without them, she will hopefully be breathing completely on her own soon. The aim of the medical team is to get to that this week!

This week has been marked by several spills, unfortunately. But I have noticed that, once suctioned to clear her airways, she recovers much more quickly and today even did so without extra oxygen. Little steps that are huge steps for her! There is often a silver lining to a cloud, as she discovered the other day when she was given a lovely, long, gentle bath following a couple of spills, and she enjoyed it so much she was virtually sleeping (I wrote this last night, and she's had a much more settled day with no spills!).

The path seems to be smoother these days. There is still a stone here or there that makes its presence known (which is completely normal, I must remember!), but overall everyone seems to be very happy with Elea's progress, and we are too! Once she's completely off all breathing support, she will have an MRI to check her brain after two ultrasounds showed slightly more brightness on one side. It could be something, it could be's all part of the waiting game. An MRI will give a clearer picture and, we hope, will show no further abnormalities. It's part of this neonatal world with small babies...the waiting and wondering, and trying not to worry in that time. It does help to remember she's been wonderfully made by her Creator, who gives us peace for whatever the outcome will be. It is scary when any abnormality concerning the brain is mentioned, but I often pray over her that she will be as God has intended her to be and He is a very good God.

For me these concerns are fading with the days as we really see Elea growing and developing. The consultant said a couple of weeks ago that she behaves like a baby 2-4 weeks younger than her age. I think it's true...she seems to have been a little slow off the starting block, but is catching up in her own time. These days she's having more awake times and is very alert (and so incredibly sweet!). We're able to bath her regularly and dress her and, with the nurses, we're moving into the phase of "normalising" her days as she approaches the time of being able to come home, which means we can get her up when she wakes and treat her more like a term baby. It's probably still a few weeks until she will be coming home but, when we get there, she'll be more than ready :o) Part of me is still afraid of her fragility, of tiring her out too much, and of holding her the wrong way that might cause her to spill or have a desaturation and need oxygen, but I also love this stage she has reached of looking more like a normal baby, with less and less tubes and aparatus and becoming more and more interactive. She's our sweet, peaceful little one and we're so thankful as we look back over the last seven weeks and see how far she has come!

Her sisters and brother are very loving and curious about her. They were able to visit her this past week after being away for two weeks with colds. It's very sweet to watch them being so gentle with her. I look forward to the day when we'll be at home together and I won't need to divide my time between them all any more. As scary as it is to think of coming home and being far away from all the monitoring and medical help, I trust she'll come home when she's ready, and that day will be a joyful one!

Saturday, 13 June 2015

:: the perks of being a highflow baby ::

This week has been a wonderful one for Eléa...which means it's also been a wonderful one for us! Each day has brought more stability, and today in the space of an hour there were several firsts! All because yesterday morning Eléa was trialled on Highflow again, and this time she seems to have really got the hang of it. I'm hopeful that after tasting some of the fruits of being a Highflow baby today, that she'll have the motivation and strength to hang on in there to keep enjoying more!

This morning when I arrived at Neonatal I found out that Eléa's Highflow had already been put down to level 5, which was great news in itself! Then, during her cares, after being examined by the nurse specialist, she was declared (kindly of course) a smelly, sweaty little baby and would we like to bath her! 6 weeks of not being bathed will do that to the sweetest of babies, I agreed ;o) It was so exciting to reach one of these most precious first milestones! Before leaving home this morning I had thought that she might soon be able to have baths, so slipped a nice baby soap into my bag to bring with me. Perfect timing! I was curious to see if she'd love her baths like her brother and sisters have always loved theirs. It wasn't much of a surprise to see that she really did. Very quietly taking it all in, probably wondering what was happening, enjoying floating in the warm water for a few minutes and the gentle touch of being was a successful first experience for our newest little water baby.

While she was being bathed, the charge nurse came over and suggested that she could now have a new bed. One for "bigger babies" that has a heated gel mattress, as opposed to her Giraffe bed that heated from above. So a few other staff came to help unplug her bed and replace it with a new cot bed. Then, as we were drying Eléa, her nurse said she could now wear clothes! (Could this day get any better!?!). So she went off to find something, while I stayed with Eléa and made sure she didn't roll off the table (least she should decide she was a really big baby!) :o) Her nurse brought back the softest white flannelette gown and slipped it gently over Eléa's head - she looked like a little angel! I enjoyed a little cuddle with our big girl while her new bed was made and prepared for her, then she was tucked in so snugly that a few of us wouldn't have minded being in her place!

It was such a special morning with all of these unexpected surprises. It felt like a gift from God to really encourage us. Eléa has made such wonderful progress this week. She is so safe in His hands, which is a constant truth through all the ups and downs. To remember this brings real peace to my heart and mind. As a friend just said on my Facebook post about today, "What an awesome God we serve." Indeed we do and we're ever so thankful for His goodness to us.

Thankfully our journey has brought us to smoother roads, and we pray that continues. On Monday our little girl will be 6 weeks old, and that will bring with it her first set of immunisations. I remember with her sisters that they had a few more apneas with their immunisations, so we will be praying that Eléa will have minimal affects and that she'll be given supernatural strength to cope with them on top of breathing and feeding well. Tonight, when I left Neonatal, I brought with me a little plastic bag with Eléa's CPAP hat in it. Mainly to add to her growing Neonatal memory collection, but also in faith that she won't be needing it anymore :o)

Tuesday, 9 June 2015

:: the paradoxes of our precious little world ::

Behind three security doors at our city hospital lies a calm, quiet haven where our youngest baby currently resides. It's little world that we have become quite familiar with over the last few weeks. Each time I go in I walk past half a dozen, often sleeping, tiny little giants before I reach our own. Tiny in stature, giant in courage, tenacity against the odds, and the ability to finish developing their major organs in the outside world, rather than the safe haven inside their mothers, because they were born too soon. There is something quite holy about being in this space. As terrifying as it is in some moments, I truly feel like I am in the company of giants. A dozen and a half perfectly formed miniatures, many more of the staff who take care of them so wonderfully, and I like to imagine some pretty hefty-sized angels watching over each sweet and valuable life.

The courage isn't only limited to the babies. I see it in the smiles of their parents. Many of whom were thrown suddenly into this world without much warning, having to ride the ups and downs of the first days, weeks and sometimes even months of a baby in Neonatal care. I know myself that it's really really scary at times, and even when there are settled moments, the fear of another dip is almost overwhelming. When I meet and talk with other parents in our shared kitchen/lounge area, they inspire and touch me because I can see behind their warmth and smiles that tears have been shed along the way. They have admirable strength and an ability to laugh and be thankful for even the smallest of steps in the right direction.

I guess I expected this time around to be easier. We knew what 26 week old babies were like and had gone through the months of virtually living around the Neonatal unit. In the hours before Elea arrived, I figured at 31.2 weeks, it wouldn't be too bad. My expectations weren't very accurate as, I've realised, every baby has a different story. Even though every scan had showed she was growing perfectly well, she had quite a shock arriving into the outside world and her first weeks were pretty tough. There were lots of scary questions with heavy implications asked of us, as the medical team tried to figure out why she wasn't behaving like babies her age normally would. I've only heard the emergency alarm being used for her, and she's had it three or four times. I know in my head that the team are completely capable of doing a lot more for a baby that we realise and that she'll probably be ok, but the sound of the alarm, the rush of the senior staff and the calm way they directed each other as they helped our little girl who had changed from pink to purple to grey...there's only so much strength to hold back the tears and the fears in those moments.

It's an experience that holds such diverse emotions. Fear and worry on one hand, with thankfulness and peace on the other for all the milestones reached, the settled hours or days and the step by step progress. I have found it hard not to feel guilty as I've watched everything Elea has had to endure that, in an ideal pregnancy, she wouldn't have had to. But these things happen beyond our control, so often the guilt is replaced by remembering with thankfulness that she is here and safe, and a pride in her ability to battle on. This time around we're also doing it with three other children at home. We are blessed and very grateful to have my mum here to look after them and carry a huge load, not only running a household but coping with their out-of-character behaviour which is their reaction to their lives suddenly being thrown into a bit of chaos, not having mummy with them all day every day, as they did have. I've really struggled to balance the needs, making mistakes along the way. Wanting to be in two different places at the same time is not quite possible, neither is keeping each person happy. The load is hard on each of us for different reasons and, when we're tired and stressed, words and attitudes come out that are unintended and we interpret each other in ways far from the truth. So, while some of you have encouraged me saying I'm a wonderful mum (which I appreciate!), I am humanly human and haven't coped well or done very well in any of my roles at times. The reality is not quite as wonderful as I would like it to be. This is not said to ask for any sympathy at all...just to be honest. It's tough, it's scary, it's reassuring, worth celebrating and beautiful all mixed into one. And we're moving in the right direction. It meant a lot to hear the consultant and head of the Unit say last week that he estimated Elea would be in Neonatal for another 4-6 weeks. When things are unsure, which they tend to be with the small babies, there's a lot of hope that comes with a glimpse of a light at the end of the tunnel...however far off that might be.

And our little hero? She's doing well. She's had some rocky moments and some great moments. A few steps forwards, a few steps back. Sometimes she's caught in a bit of a vicious cycle where she needs something that causes something else that causes something else because she needs that something. But she's moving ahead in her own fashion that oftentimes is accompanied with the words "I've never seen that before!" It makes me wonder what big plans God has for her life with her ability to move ahead outside of the usual parameters of "normal"...a word that we as parents crave to hear!
Today she has been very settled and relaxed - I think the most settled, uneventful day of her life so far (we also like to hear the word "uneventful" in this little world!). So, as I drove home tonight for the first time in months, I was very touched as I recalled the events of the day, the people I had met, the precious world we are currently existing in, and the good and ugly parts of this experience of living under stress and tiredness with hope for a good outcome. I don't wish this experience had never happened, because there are good things in it. I grab a hold of some of those things, but stumble and drop them...and some are yet to be reached, but I'm thankful it's all been meant for us...and for every person who is part of it, from the staff, to the families, our family and many of you who have held Elea and us in your prayers and given us so much encouragement.

Thank you so much