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 :)