I know you’re terrified. I know you’re more exhausted than you ever knew you could be. I know your emotions seem to swing wildly from hopeful to despair in mere milliseconds. I know there is nothing that your family or friends can say to you that will take away the gnawing ball of anxiety that eats away at your stomach from the minute you wake up, until you eventually succumb to a fitful sleep. I know that the many hours in between will be spent vigilantly sitting beside your precious, fragile bundle that lays there, likely in amongst a snaking mass of unfamiliar tubes, wires and equipment.
I know that you might not even have had the opportunity to hold your baby yet. I know just how much your arms and your heart will ache for that moment. I know that you will try to put on a brave face for your loved ones even though you feel like you’ve just walked away from a train wreck. I know that you will have trouble fully comprehending what the doctors are telling you. I know that you will against your better judgement spend every free moment you have googling terminology; terrifying yourself in the process through your desperate attempt at finding a glimpse of what the future holds for you and your child. I know all of this because I have lived it. A year and a half ago, I was you. So first I’d like to tell you a little bit about my own HIE story and how it began.
On New Year’s Day of 2019 my beautiful boy Joseph was born at 37 weeks gestation via natural delivery after low risk pregnancy. Much to the surprise of the midwives and doctors he was born in very poor condition for unknown reasons. He was found to be a candidate for hypothermic cooling therapy and was quickly transferred to another hospital with a level 3 NICU where he received this treatment along with various other tests and medical interventions. Whilst in the NICU he developed meningitis which he was also promptly treated for until after a couple of weeks he was considered stable enough to be transferred back to our local neonatal unit.
Joseph has no suck, swallow, gag or cough reflexes and because of this he struggled to be fed into his stomach via a Nasal Gastric (NG) tube due to severe reflux and an unsafe airway. He needed a Naso-Jejunal (NJ) feeding tube (this bypasses the stomach and slowly feeds into a part of the small bowel to reduce reflux/vomiting and in turn reducing the risk of milk aspiration.) because this type of feeding tube can only be passed and checked under X-ray, Joseph remained in hospital for a large chunk of the first year of his life (235 days to be precise) whilst we awaited the go ahead from surgeons to say that it was safe for him to have a PEG feeding tube placed. We also spent around 4 months trying to wean him off high flow oxygen (optiflow) as he had gotten rather attached to the tiniest little puff of flow helping him to breathe when he got tired.
We practically lived at the hospital for 8 months so I can say with a good level of certainty, that I am experienced enough to know just how tough an environment it is to be in. I was spending on some occasions up to 16 hours a day in the neonatal unit, I was there 7 days a week, for months. I’d be going home at night absolutely exhausted and feeling like a piece of me was missing, wondering when, if ever my boy would come home.
I know very well how mentally and emotionally challenging it is just to get through the day, especially in those early days, so I’d like to move on now to sharing with you some of the little strategies that I used to help me cope during that time, and hopefully some of them will be of use to others.
Firstly the most important tool that I found helped me keep it together, was simply staying present. I discovered that if I thought too much about what had happened or worried about the why’s and what if’s, I would start to unravel. I tried to focus on what was happening in the here and now, at that very moment. I would apply the same mantra if I found my mind wandering too far ahead into the future. I realise that this is not an easy undertaking and it took me quite a lot of practice to get it right, but once I found that I could recognise when my thoughts were spiralling and take a second to refocus and concentrate on getting through the next; 5mins, 30mins, an hour, 24hours (whatever it takes) I actually found it was very effective in keeping me calm.
Another useful strategy I used was allowing myself some time (either each day, each week or whatever I felt was needed at the time) to have some quiet reflection on the positive steps that we had made forward. You can write these down if you think that it would help. I used photos and videos that I had taken as a visual to see this progress. At the points when there didn’t appear to be any improvement in the time between my reflection, I still tried to look at that as an achievement. A pause in progress is better than a step backwards. If we had a step backwards I would remind myself how many steps forward we had made already and I allowed myself to believe that we would do the same again. I say ‘we’ because we were and still very much are a team, and though much of the progress to begin with was reliant on doctors, medical intervention and how Joseph responded, as time went on, my partner and I were able to take more of an active role in helping Joseph to get better, to learn and develop. The neonatal staff were fantastic at letting us get stuck in with learning how to manage all of Joseph’s cares. I will also add that progress is progress no matter how seemingly small or insignificant. This progress doesn’t have to be a huge milestone, if it is, then that’s absolutely fantastic! But it could be a small win, that is nevertheless still a win. It soon got to become second nature for me and I wouldn’t have to try hard at all to find something positive.
The third thing was eventually allowing myself some time to try and switch off. Again, extremely difficult to be able to do under the circumstances. It may only be 5 minutes that you manage to begin with. Start small and build the amount of time up and you should hopefully start to find that you are able to relax for a little longer each time. You can spend this time however you’d like, depending on your own personal interests or hobbies. Just try to do a small, kind thing for yourself each day. The benefits will be enormous.
The last one I’ll leave you with (as I don’t want to overwhelm you too much) is; Don’t be scared to be upfront with people. When Joseph was in hospital I had so many different people texting me relentlessly asking how we were doing, wanting to know what was going on etc at all times of the day and night. To begin with I felt obliged to respond to all of these messages as I knew that people genuinely cared and were worried about us. Obviously this was unsustainable and quickly became too much. Trying to relay complicated information back and simplifying it so that others could understand it several times a day became exhausting and frustrating. Eventually a family member set up a WhatsApp group for other family and friends to share information on how Joseph was doing. Myself and my partner chose not to be in the group but would pass information on to one person to then share with everybody else. This took the pressure off me and allowed me to focus my energies more on Joseph, my partner and myself. You’re going through an extremely stressful time and the people who care most about you will no doubt want to help in any way that they can. There will be times that they will need guiding in how they can help you and if they truly care about you they will be more than understanding when you are honest with them.
I know all of the suggestions I’ve made are far from easy things to do. They all take a lot of work, patience and practice to achieve, but with the right amount of determination they all worked well for me.
We have had a very bumpy road to get to where we are now (at home, happily raising our miracle boy – challenges and all) there have been many tears and many testing days. We have had to adapt and learn more than I ever thought I would be capable of. But we did it and despite the challenges past, present and those to come in the future, I couldn’t be more proud of myself, my partner and Joseph for the things we have endured and overcome together as a family.
I want you to know that the hard times do get better. You will feel human again. You will feel happy again. Your heart will mend and no matter your baby’s outcomes, you will find your own new normal in amongst the chaos and you will never experience a fiercer love than the love that you will feel for your little warrior.
Sending lots of positivity to you and your family and I hope that you were able to take something away from reading this.