Even though I knew Mia needed surgery when she was born, I could only ever semi-prepare myself for what lay ahead. I had, as always, done my research which involved lots of reading. I was also fortunate enough to be put in contact with Lissa, a local mother whose child had also been born with Oesophageal Atresia.
Lissa and I had met one morning for coffee just a few weeks before I gave birth. More than anything, the benefit of meeting and talking to someone about their experience was that it gave me hope. Here was a lady who has been in my shoes and she was able to talk about her experience of having a baby who needed surgery. She was calm, she was matter of fact and above all, she was realistic; the next few weeks and possibly months were going to be tough.
Despite knowing it would be tough I am not sure anything could have truly prepared me for the rollercoaster of emotions I felt; scared for Mia and her future, such sadness that we were spending the first days of her life in hospital without knowing how long we would be there and when we could go home, angry that this was happening to us, helpless and frustrated that there was so little I could do to help Mia, and, most significantly, an overwhelming feeling of love and pride for my tiny human.
Mia was born on the morning of Thursday 25th July and, as explained in my previous post, I was sadly unable to spend much time with her on this, her first day. Having finally been reunited on the Thursday afternoon I struggled with being apart from Mia whilst she was taken care of in the NICU and I was in the Maternity Ward. It didn’t seem right to me that she was down on the ground floor while I slept/rested and had my meals four floors away. Therefore, as soon as I was given the green light that I could move to be on the same floor, and along the corridor, from Mia I was there. In hindsight I probably wasn’t well enough to leave the maternity care when I did, however at this stage being able be near to and spend time with Mia was my absolute priority.
My first introduction to life in NICU was to witness the meeting of the surgeons. On this particular morning the key topic on the agenda was the planning for when Mia’s surgery would take place. The surgeons’ meetings, and being able to witness and interact with them, became something of a highlight of my day later on in our hospital stay. On this particular morning, however, I was disappointed to learn that Mia had to wait another day before she could have surgery.
In reality this delay was beneficial as it allowed me to spend almost 48 hours visiting, holding and bonding with my baby prior to what turned into the longest and most emotionally draining five days of my life.
Late on the Friday afternoon my parents and I met with Mia’s surgeon who talked us through what was due to happen and the likely outcome of the surgery which was scheduled to take place on the Saturday morning.
Based on the results of all the tests the doctors had performed on Mia they had been able to confirm that it looked like she had ‘long gap Oesophageal Atresia’. In OA/TOF terms this is deemed the worst-case scenario due to the fact that the gap between the two ends of the oesophagus is often too large to be able to bridge immediately.
As a result the first job for the surgeons was to create a gastrostomy or ‘G tube’. This tube passes into the stomach through the abdomen wall and allows the baby to feed through a tube. This procedure is done to allow the baby time to grow and give the two ends of the oesophagus a chance to grow and develop further before additional surgery is required in the future.
In Mia’s case the surgeons were keen to investigate how stretchy both the ends of her oesophagus had become as it appeared that the top part of her oesophagus had grown longer than they usually see. This meant that there was a possibility they might be able to make a primary join of the oesophagus, but the chances were very small.
Based on this information, my own gathered knowledge and from all I had learnt from talking with Lissa, I knew it would be sensible for me to be cautious and to start to prepare myself that Mia could be heading for a long stay in hospital…
The initial plan was for Mia’s surgery to take place at 8.30am on the Saturday morning, therefore my Mum and Sara left home at the crack of dawn to spend some time with us before Mia went into surgery. However, it turned out that Saturday 27th July became ‘appendicitis day’ and before Mia could make it along to surgery there were eight emergency appendix operations that had to happen.
This turned out to be another blessing in disguise as it allowed us the whole morning and lunchtime to spend time with Mia and take it in turns holding her and showing her how loved she was. Although we were sitting in NICU surrounded by beeping machines, babies in incubators, nurses and doctors, we actually managed to have some treasured family time. As a result, when they came to inform us just before 2pm that Mia was now going to go along to surgery, I felt ready for her to go and endure the next part of her journey. When Mia was being taken to the operating theatre, I had opted to go with her. Although I knew I would not be allowed any further than the theatre door I felt it was important that I was there to ‘take her’.
The 20-minute journey from NICU to theatre across the hospital following Mia in her incubator is one which will stay with me forever. In that moment I was so afraid for what she was about to face, however I knew she was in the best possible hands and that I needed to be strong. She was so small and helpless, but I felt that if I could be strong then that would help her. And it did…