:: a grateful heart ::

A wise friend once said to me that giving thanks is a powerful weapon in trying times. In the seasons of life that threaten to overwhelm us, to stop, notice and whisper a thankful prayer really does make a difference. We're in the middle of one of those seasons. Some days I don't know how I can do it, because I simply can't do everything on my own. There have been moments when I stop and look at the overall situation and wish that our story could have been just a bit different. Less complications, less stress, less tiredness, less confusion, less separation, less isolation, less unknowns. The unknowns make it seem like we're feeling our way along the path in the dark, not sure where we might end up. But, you know...if I change my perspective and take a little closer notice, the beauty is right there in the midst of everything. And there is always, always, something - many things - to be grateful for. As hard as it often is, choosing to have a grateful perspective lifts ours eyes and lifts our souls to remember that we are held, we are sustained, provided for and loved in every moment. And that we really are!

I am so thankful that we found the right person to come and spend several hours a day helping me out at home. Life is extremely busy with four pre-schoolers. One of whom loves heights and adventures of which his two year-old brain can't quite predict the consequences (or realise that there are consequences!), and one who needs our close attention at every moment. We found a friend who, at the same time, was discouraged in her work and was wondering how she could help us. So the both of us look forward to each day, grateful for each other's company. Jesus knows us so well to orchestrate things in this way. We are also so thankful to have governmental financial assistance and for friends who have been giving generously to add to that so we can pay her fairly.

I am thankful for our little team of people in this home. Our older three, who have gone through months of either waking up and finding mummy had unexpectedly disappeared off to hospital in the night, or had to share my limited time and attention as I spent hours a day at the hospital, could have understandably resented their little sister, but they haven't. They have wholeheartedly embraced her into our family and adore her. I have a feeling that her big brother will remain her keeper for many years...he may also have to walk her down the aisle on her wedding day with papa! He loves her so sweetly and gently I have no doubts they will be fast friends. Her sisters, too, love to touch her, talk with her, read to her, sing to her and help get anything she needs. They are strong, tender, and remarkable, and I am so grateful for each of them.

I am thankful for Eti, who is a wonderful support. We both have our hard days when we feel overwhelmed and exhausted by the endlessness of these early days, but normally when one is sinking, the other has the strength to grab a hold and pull, offering a better perspective. He is quietly servant-hearted, and generously loving in providing what we need and doing what few fathers can do or do, by doing the middle-of-the-night feeds. At least being fully nasogastric tube fed means that it doesn't just have to be mummy doing the feeds :o)

I am thankful for so many of you, our family and friends, many of whom live far away, who hold us in prayer and encourage us often. It means a lot to know we don't walk alone. Your hope joins with ours and your love for us is so generous. Thank you!

Last but not at all least, I'm thankful for the central character in this season's story -  our littlest love Eléa Agnès Joy. Her name means 'bright, shining light; peaceful, and joyful one'...and that is who she is. She is full of courage with the struggles she has gone through and still sometimes endures. As she grows and strengthens we have hope that these struggles will fade, but they do still occur from time to time. It's tough to see the panic on your baby's face as she tries to find breath that doesn't come until we manage to help her clear her airways. She is peaceful, though fiesty, sweet with such inner strength, and completely beautiful. Maybe it's her generous head of hair, or maybe it's her experience so far in her short life that fills her eyes with a depth of wisdom. We can't help but agree with Théo's adoration of her and feel so grateful to our Father in heaven for giving us the precious gift of her life. So thankful for every part of her...especially those ever-increasing sparkley eyed smiles :o)

These places in which such goodness dwells, which are all around us, help us find purpose and love in this narrative that is ours. It's easy to resent our story and wish it looked more like someone elses. I guess we always prefer the thought of a journey that is smooth, easy, fun and without fear, pain, or struggles. That is what we long for and what we look forward to one day, though in this life-time the shadows and darkness do exist. But that doesn't mean that lamps of gratitude can't be lit to show the beauty that exists all around us, if we just take notice. It's not easy. Some days I don't have the energy or the will to look up, but today I do...and I write to remember my gratefulness.

:: inside out ::

I feel the need to catch up on all the weeks that have passed since the last post here! I've tried a few times, writing and deleting. It's been a bit of a whirlwind and the rollercoaster ride has continued to have it's ups and downs, it's twists and turns, but it feels like it's slowly but surely coming back to level ground. The end of our life in Neonatal is definitely on the horizon. In three days, on Wednesday, the plan is for us to leave, spend the next two nights in a special transition home next to the hospital, then be home by the end of the week. It is exciting, yes! But any Neonatal parent will know that the excitement is tinged with apprehension and a little fear of suddenly having full responsibility of a precious little one who still has the potential to have some bumps along their path. I do feel more ready now, though. We will go home with a pile of equipment, from an apnea alarm, to a milk feeding pump and a suction machine, but all of these help to reassure us that we will have what Eléa needs in place, and if all goes really wrong...we've signed up for St John's ambulance.

I find it hard to express my thoughts at the best of times. This has definitely been the most challenging experience in my life and probably also for each person who has been living in our household over the last few months. There have been so many emotions that it is very hard to express accurately what I feel, let alone help anyone else to understand it. Often, during the 40 minute drive to or from the hospital, I take a moment to try to consider all that has been happening and the road becomes blurry. I think almost every emotion occupied my mind through the good moments, when we've felt reassured, relieved and thankful, to the the fearful moments, the unknowns and scary conversations, and the frustration, tiredness and stress. I have to remember that, at the centre of this all, there is a very precious little girl called Eléa Agnès Joy, who has shown us nothing but great courage and peace and has slowly but surely proven that she can do what she needs to do in her own time. She has consistently shown that her path is off the beaten track of "normal" as, several times in different situations, the nurses and doctors have said "we don't normally do this!" But the path she is on is not a barren path of worries. It is a beautiful one that is full of life and it will take her to the destination that Her Father has always intended for her to reach. She has not only captured our hearts but also those of several of her nurses who ask to be in her room, or say to us that they're really happy to be taking care of her. We are very proud and thankful that she has been gifted to us.

In the time since I last wrote, Eléa went off Highflow and never looked back (yay!). She was transferred from NICU through a couple of sets of doors to the SCBU (Special Care Baby Unit), Over the following days the probes that were attached to her chest measuring her heart beat, oxygen levels and breathing rate were removed, then eventually the probe that was around her foot disappeared too, and the "sats" monitor was turned off (that was the hardest one for me to part with!). Now she just has an apnea monitor. She has continued to have problems with secretions (saliva) that, from time to time, gather in her throat, mouth and nose, cause her to spill (a.k.a. vomit) and can block her airways. This is what scares me most about going home and leaving the safe, medical environment, but we can only trust she will be ok, as she has been. We have what we need to help her, there will be a nurse and the specialists she needs coming to our home, and just being in her own home environment will help her to strengthen and thrive. She is fully tube fed through a nasogastric tube, although in the last week has started trying the bottle. It was so exciting to see her drink from it for the first time! Even if it was only a few millilitres, she showed she could do it, as well as swallow and breathe :)

This is but a glimpse of what the past weeks have held. The coming days hold anticipation and excitement, that tinge of apprehension and also a sadness that we will say goodbye to a team of people that have created a warm, welcoming home away from home for us over the past 12 weeks. The Neonatal team have taken such brilliant care of Eléa that we have very grateful hearts for all they have given and will really miss them. But the time has come that she is ready, and we will be ready and there are two big sisters and brother who are more than ready for their little sister (and mummy!) to come home. Our three little people have weathered the past 12 weeks so well and so bravely. It has been really hard on them sharing me between hospital and home. My heart has hurt for them but I am so proud of how they have managed. My mum was a big part in helping settle them with their familiar routines and lots of love. They have loved their visits in to see their little sister but we're all looking forward to being home together and to really start life as a family of six :)

:: 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 nothing...it'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!

:: 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 cleaned...it 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)

:: 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

:: the frustration of being sick ::

Our sweet little girl is already 12 days old! So much has happened over the last 12 days that it feels both short and also very long. This past week has been a really tough one from my point of view. I started getting a cold a week ago on the girls' birthday and it grew worse over the subsequent days until gradually disappearing very slowly. I was able to squeeze in a quick visit with Elea on Tuesday, feeling well enough at that point and wearing a mask. Though since then a cough appeared and the end of the cold has lingered on. Usually I'm the one in the family that manages to escape most of the bugs that pass through, but I know this time around it has been a result of a very tiring, stressful week that took it's toll physically, mentally and emotionally on my body and it's been incredibly frustrating to wake up each day and still not feel 100%.

I know how important our presence is for our baby, and even more so how important it is to have plenty of 'kangaroo' cuddles (skin to skin). This contact has so many benefits to these tiny babies, as you might imagine! Just being close to mum, hearing her heart beat, feeling her warmth and smelling the familiar smell is of huge comfort and helps so much with baby's development. It's been pretty hard to spend days at a time without seeing my little girl and letting her know I am here and missing these opportunities to hold her. I know the best thing has been to stay away so she doesn't catch anything nasty, which is the last thing I would ever risk. But I've been afraid that subconsciously she would notice my absence and it would affect her. It has helped to know she has been very settled on a whole, particularly with her breathing. Eti has been in each evening after work and had long cuddles, which she has really loved. She cried almost every time she had to be put back in her bed! Knowing that she was seeing her Papa every day made it a lot easier on my heart! And one of the senior nurses reassured me that they also take care of her and give her lots of love and care in our absence.

Today I have felt almost 100% well and have been able to go and see our beautiful little one. She's looking so good and putting on weight, despite not being on milk feeds at the moment due to a tummy bleed earlier this week. There are a few things that are being monitored quite closely by the medical staff - possible concerns - but things that with time and growth will either prove themselves to be legitimate, or, as we pray and hope, nothing worth worrying about. This roller coaster ride is so tough on the emotions! We have to try not to let our non-medical minds wander into all worst-case scenarios, but find that quiet space of peace and have patience to wait and see, trusting and praying all the while that all will be well no matter the outcome. And as our sweet one grows I pray for many hours over the coming weeks to cuddle her and talk with her and spend time with her until we can bring her home.

On the home front my mum is our hero. She moved in with us just before I went into hospital the first time, and will be with us until Elea is home in July, all going well. She has made a lot of tough sacrifices in her choice to do this, but her presence has been such an incredible help (plus I love her company!) and stability for our other three little people. She has kept them in great routines and run our household single-handedly for much of the time. Our three have done so well but it's also been understandably unsettling to have mummy disappear in the middle of the night to go into hospital (twice) and then have to share our time with their little sister who is in a hospital across the city from our home. Having mum here to keep them settled and secure has been an amazing blessing. I'm acutely aware of my inability to thank her equally in return for as much as she has given, knowing it's not easy to run someone else's home at the best of times. We're so thankful for a mum who puts her love into action and carries an incredible load to serve us.

Here's to a healthy week, plenty of cuddles with our littlest,quality time with our precious three at home, and much encouragement and refreshment for an awesome Superma!

:: on swings and roundabouts ::

So much has happened since my last post many months ago! I never meant to leave this little space unattended for so long, but never really found the words to put to any of my thoughts, so kept putting it off until now as we're embarking on a journey that almost requires words to be written down to help process each day.

A week ago today we had a déjà vu experience. I was just over 31 weeks pregnant and couldn't sleep because of uncomfortable tummy tightnings...which hadn't happened during my pregnancy until then. After having a complication-free pregnancy with Théo I was pretty confident that the girls' was just a one-off and they came so early because they were twins. But this 3rd pregnancy ended up being the most complicated and stressful of them all! After a close call at just over 24 weeks and two weeks in hospital, every day passed was a milestone. So it was wonderful to get into the 30's! But a week ago I soon realised that that was as far as we were going to get and our beautiful little girl was delivered by emergency caesarian not much longer after arriving at the hospital for an assessment.

We're thrilled to welcome Eléa Agnès Joy into our family. Her original birth weight was noted as a healthy 1690g, but when she lost 330g within her first few days, the doctors decided there must have been a mistake and put her back at approximately 1500g. That did seem more realistic, given her tiny size! She's perfection in miniature and our only dark-haired baby. We were a little shell-shocked with the quick turn of events that morning, but just so thankful that she was alive given the timing of getting to the hospital that morning and realising I was well and truly in labour with very little time left to spare, and learning of other factors later that could easily have led to stillbirth. I think she was more shell-shocked to have suddenly found herself out of her safe, cosy little home. A few minutes after birth she stopped breathing and had to be resuscitated, which was very scary for Eti who was there with her. Thankfully she recovered and after being put on the ventilator for a few minutes, she was back on the CPAP.

One thing about premature babies in the neonatal world is that it really is a rollercoaster ride. In the first days there are highs but plenty of lows. Eventually, as time passes, the highs continue in increasing frequency, and the lows start to slowly disappear (in our situation - not all unfortunately). With the passing time, and having to learn how to live one day at a time, the scary moments of the past start to fade and, with our girls, I soon got to the point that they were healthy and thriving like other babies their age, that I had very few memories of those early days that held so many doubts, tests and scary unknowns. It's been a bit of a shock to have to revisit those memories in the reality of another precious tiny baby, albeit one who started life at 1500g rather than 700g, which is a more encouraging place to start from.

I find myself longing to hear the word 'normal' as often as I can with any updates on Eléa's progress. 'Abnormal,' on the other hand, is the word that brings with it a lot of fear and it can be very hard to keep my mind from wandering to all the possibilities. Today I've heard 'abnormal' three times and it's been really tough on my emotions. Also being the third day in a row that I haven't been able to go to see her because of sickness doesn't help! What does help is that the Neonatal consultant (the top doctor) and specialist nurse are not too concerned, which rests my overworked mind somewhat, especially because I know from all his very serious questions and investigations that he would not hold back on saying if he was concerned. There are a lot of 'wait and see' situations, so we can't do much but wait and pray for the best outcome for sweet Eléa. And I have to ask myself what I expect and how I would respond if things don't match what my idea of 'good' looks like. We are surrounded by friends all over the world who are praying, as we were with the girls, which is an enormous encouragement. Just knowing we're not alone and that they are holding us up and sending us words of truth and life mean so much.

 

So, here we are a week into our new journey and so proud of the enormous effort our Eléa has given in her first week of life. She has had a few stable days in a row now, which is wonderful. Her lungs really struggled for the first couple of days but seem to be strengthening, and she has been so brave with all her blood tests, numerous IV lines being put in and taken out, scans, and monitoring. We're thankful she's in the very best place she can be right now and that the medical team are really taking her situation seriously, looking at every possibility. They can't give us any promises or hope in these early days, which is typical in the Neonatal world, but we can trust that they are doing their best, and we can find our hope in a good God who loves each of us beyond our understanding and look for the many things to be thankful for each day to help combat the fears and worries that are quick to move in.