Looking Back To Look Ahead
On Tuesday, we had an appointment with the head of the Neonatal unit where Evie received her care immediately after birth.
You might remember that we recently took Evie for an MRI brain scan to further investigate the lack of movement and use in her left arm and hand. (For those of you who are new to the blog, the post “Evie’s Journey to Alder Hey” can fill you in a little more on this!) They scanned both her brain and the nerves leaving the brain and found no signs of damage to either, hurrah! The paediatrician recommended physiotherapy for Evie so that she can gain maximum function in her left arm. He made a referral within the NHS, but unfortunately it can take some time to get an appointment. While we wait for that appointment to come through, we have decided to book some sessions with a private physiotherapy clinic. This way, we can be doing the right exercises with Evie at home in the interim. I’m happy to say that even though we haven’t started her physio sessions yet, she is already showing more movement and is trying to use her hand more and more.
Our appointment with neonatal on Tuesday was more for my benefit, for a couple of reasons.
Following Evie’s birth, she was taken directly to NICU while I was transferred to the post natal ward. Due to my own health issues, I found it difficult to both take in and then recollect conversations I had with doctors, midwives or consultants about Evie’s treatment and care.
It wasn’t until our initial appointment with the paediatrician that I realised how little I knew about that period of time and how crucial it actually was for understanding what she is going through now. I had full on mum-guilt as he asked me questions that I didn’t know the answers to, but felt that I should. He also highlighted that we should have received a discharge summary from NICU (detailing all of her care from birth) when Evie was transferred up to the ward, something that neither my husband or I had any recollection of. Cue more mum-guilt!
I pushed to have an appointment with someone from the neonatal unit so that I could gain a better understanding of Evie’s care, but also to see if there was any connection to be made between how she was in those first few days and the issues we’ve now been dealing with. It took some time to get, but we were finally able to meet with the doctor who was in charge of Evie during her time in NICU. I was relieved to learn (well, kind of?!) that my husband and I were correct; we did not receive the discharge summary that the paediatrician had asked for. I’ve now been promised that a copy will be sent to us straight away and will be glad when we finally receive it.
Evie is now 9 months old and my lack of knowledge on what exactly happened with her following her delivery (including the traumatic nature of the delivery itself) has continuously caused me to look back. It has caused me worry and anxiety as I’ve had questions that I didn’t know the answers to. It was time to gain a better understanding so that we, as a family, could start looking forward.
The appointment on Tuesday proved to be very informative. The doctor explained step-by-step what happened to Evie, why they did the things they did and how they felt happy with her progress in NICU to discharge her after 3 days to join me on the ward. To give a brief overview, she was deprived of oxygen at birth and we were scarily told at her delivery that she had to be taken away to have her brain activity monitored. I’m eternally grateful I was so medicated at the time this was said that I was blissfully unaware of the gravitas of what was actually happening. While my poor husband was worried sick, I was smiling at him saying, “It’s fine!” The monitoring all came back fine, but she developed an infection, which they suspected to be sepsis and started her on a course of antibiotics. She was responding well enough to the antibiotics on her third day that they gave her the OK to join me on the post-natal ward. That’s basically the nuts and bolts of it!
The main thing I took away from the appointment was hearing that the neonatal team had no reason to think that Evie would have any further problems down the road, after her discharge. The doctor was surprised to hear of the issues she’s been having and agreed with the course of physio the paediatrician had suggested. The second reassurance came from the doctor agreeing that Evie should be monitored moving forward. If we continued down the private route, it would ultimately be up to my husband and I to monitor Evie’s progress and book appointments when necessary, or at least that’s the way it seems to have been left. She will now be seen within the NHS starting with a checkup in a few months time.
Ultimately, what Tuesday highlighted was my need to stop looking back. In addition to our worries over Evie, I have also been dealing with my own health issues that finally seem to be moving in the right direction. All of these anxieties and concerns have made moving forward a struggle. I wouldn’t say that any of the answers we’ve had, either for Evie or myself, have been clear cut, but they have at least provided a plan of action.
I have held off from writing about Evie’s birth until I felt “ready”. Part of the reason I started this blog was to have a place where I could just write about how I was feeling in the hope it might prove therapeutic in some way. I feel that perhaps writing about her birth would now benefit from that.
I’ll be working on that for the next blog post but in the meantime, keep up to date with posts on Instagram for a look at day to day life as a first time mum!
Little Evie & Me xx