This last week has been very hard and on numerous occasions I’ve been very close to giving up hope. I haven’t, and I now have a renewed drive to carry on and be strong for my girls.
To provide some context for this post, here are the cliff notes:
- At the start of the week we were told, for the first time since their birth, one of our daughters had a slim chance of survival.
- The following morning we were told that babies in her condition have responded to standard treatments and been sent home and done well.
- An hour later we were told that things were more serious than the doctor had realised and we were offered a ceremony for her.
- During the course of the day, we were told that various treatments would give her more time and make her comfortable.
- On the evening we were advised that there was one last treatment option, normally reserved for term babies, that may help to give enough time for various other treatments to have a positive effect.
- Ultimately, by this time we were advised that the fate of our princess rested on the results of 3 consecutive blood gas tests as this would indicate wether she was up to the task of continuing with her treatments.
Now, having been in NICU for 9 weeks, we’ve learnt that many things can affect the results of her blood gas test and cause them to be “bad”. Even having her nappy changed too soon before the test can be enough to cause it to appear as a “bad” gas.
I think it’s fair to say that we weren’t feeling too hopeful after riding that emotional roller coaster all day, especially when very little hope could be offered to us by the doctors and nurses looking after her. In short, my wife and I had prepared ourselves for having to say goodbye to our little princess who had fought so hard for nearly 10 weeks.
I think it was at that point I felt I had lost all hope and we went to bed, reluctantly, waiting for a call to say we should get back to be with her. Waking up the following morning felt equally hard because I didn’t know what to prepare for. How would you prepare for a morning after a day like that?
Much to our relief, she had shown signs of responding to the treatment and seemed a lot more stable, despite still being critical. And that is where she has remained for the last few days; critical but stable.
Each day has been hard to take ourselves away from her, even to eat or drink, and often the nurses have had to be the ones to encourage us to leave her for 15 or 20 minutes so we can look after ourselves.
We’re not out of the woods yet, and we’ve been told to prepare for things to get bumpier over the next week or so because her next planned treatment is heart surgery, which may or may not improve things enough to help her get better.
Whilst it has been hard I have learnt this week that as a parent you should never give up hope of your baby surviving. That’s not to say I thought she couldn’t do it, or that I didn’t want her to, but in the face of that lack of hope it can be easy to wonder “what’s the point?” and “do they deserve repeated painful treatments if they won’t offer any chance of improving their condition?”
This isn’t to say that I now believe everything will be fine but rather I believe my daughter, given the right treatment and support, will continue to fight as hard as she can for as long as she can. I can’t ask any more of her than that and if it isn’t enough to overcome how poorly she is, then I will say goodbye to her knowing that our princess wasn’t ready to join us at 23 weeks and 5 days.
On a side note, the girls are 10 weeks and 2 days old today which would give a corrected gestation of 34 weeks. I wouldn’t change a minute of this 10 week emotional roller coaster for anything because the time that I have had, and hope to continue having, with my girls has been amazing.
As the song goes, Que sera, sera.
The First 6 Weeks 