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!