Thursday, 17 September 2015
These past few days have been relatively peaceful. Eléa is settled - she still has spills somewhat frequently (especially the last couple of days!), but I can't remember when we last had to rush for the suction machine to help clear her airways. She's smiling more, 'talking' and our days have been running relatively smoothly, with gratefulness for our friend Norma who has come for several hours a day to help me and love our children. Here is a random collection of photos to give you a little glimpse. Just remember that I didn't photograph the messy scenes, and the challenging moments - there are plenty of those! - a fair amount of tiredness too, but these are the moments we have been treasuring...
Tuesday, 15 September 2015
Last week we heard the terribly sad news that a beautiful friend had passed away after a battle with cancer. We were honoured to have her as our midwife for Théo's birth, though several friends, including my sister and my midwife for Eléa, knew her at a much greater depth and her passing leaves a huge hole. In comparison we knew her relatively little but she made such an impact on us that I want to honour her by writing. It's still very surreal to believe that she is no longer here. The last time I saw her was just over 3 months ago when she popped along to see Eléa and I in the Neonatal unit. At the time she made no mention of cancer and I had no idea because, as a true reflection of her character, she directed all her focus on others, encouraging us with her prayers and hopes for Eléa. Even after texting her the night I learned the devastating news that she had terminal cancer and was flying to the US for treatment the following morning, her quick reply included a reassurance that she was still praying for Eléa. I was deeply touched by the depth of her selflessness when she had so much going on in her own life.
Irene became my midwife just a week before Théo was born, as my midwife up until that time, Deb, went on leave for her wedding. My sister, Beth, had previously spent several weeks of her midwifery training working alongside Irene. I had heard a lot about her and already was aware of her wonderful reputation, so it was a real blessing to be under her care for Théo's birth. One memory of that beautiful Sunday morning that will always remain with us was her prayer of blessing over Théo when he was just minutes old. Those are her hands above, holding Théo as she showed us how to bath the only term baby we've ever had. We were so grateful for her care of Théo and of us during those first few weeks as we navigated the unfamiliar path of having complete responsibility of our own baby from day one.
During the last weeks, with a Givealittle page that was started by a family friend to support Irene and her family, and subsequent Facebook posts since her death, it has been very clear that she touched many, many lives, from her beautiful family, to friends, and many, many women whose babies she delivered with such care. We can't make it to her funeral tomorrow, but I suspect it will be overflowing. She has left a great hole but a wonderful legacy. I have a beautiful bouquet of freesias on our table, that were given to us this past weekend. In many ways they remind me of Irene's life - vibrant, beautifully and intricately created, and with a sweet, lingering fragrance that has spread throughout the house - a reminder of spring and new life.
Now he uses us to spread the knowledge of Christ everywhere, like a sweet perfume.
Our lives are a Christ-like fragrance rising up to God
2 Corinthians 2:14-15
Tuesday, 8 September 2015
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.
Sunday, 26 July 2015
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 :)
Sunday, 21 June 2015
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!