Two steps forward, one step back

We were often told that the nature of premature babies is two steps forward and one step back. This was certainly the case for our girls. Despite feeling like I was living on a cliff edge, I had to learn to be patient and expect these steps back. Every morning I turned over a new ‘yesmum’ card and felt determined to live by it. My favourite cards were: “I let go of what I can’t control” and “Today I will see the best in my child and myself”. When the girls took their steps forward I felt elated and my ability to stay optimistic soared. However, this was often intertwined with one of them taking a step back. The steps back were never easy to take and I spent these days praying and willing myself to keep strong and not lose hope. For many days Esme would take two steps forward and Charlotte would take one step back. This was difficult and I felt like my emotions were constantly torn and stretched to their extremes; so proud of one yet distraught for the other. During these days, I really have the nurses and my husband to thank, for enabling me to see the strengths of both girls and believe that tomorrow is a new day.

When, on the 10th July, Charlotte and Esme were born via an emergency c-section I realised that I had been a ‘crash call’ in which an alarm sounds on the ward and certain members of staff leave what they are doing and run to where they are needed. It’s a scary thought now knowing what was happening while I was waiting to go into theatre, none the wiser. Esme was born in fair condition, a good colour and with a good heart rate of over 100bpm. She showed some gasping respiratory effort. As Charlotte was without her waters, she had contracted the infection which had triggered my labour. Charlotte was born blue and floppy, with a heart rate of around 60bpm and no respiratory effort. I later found out that when a baby is born at extreme prematurity, the consultant has to decide whether or not to give them a chance. I am eternally grateful the consultant saw hope and had faith. Charlotte is a true warrior. To this day, my heart still stops and tears prick my eyes when I read the words ‘blue’ and ‘floppy’.

When the girls were born, Connor and I had to sign our consent to allow them to have blood transfusions. Initially, the thought that my babies needed blood transfusions terrified me. It brought home just how poorly they were. By the end of August, they had had a total of thirteen blood transfusions; Charlotte had had six and Esme had had seven. It got to a point where if we walked into the ward, and were told they were currently having a blood transfusion or were waiting for the donated blood to arrive we were totally fine with it; blood transfusions had become part of the norm. The nurses explained that one of the signs they needed a blood transfusion, was they were very pale. They had to have their blood drawn and heel pricks done so frequently to test their blood gases (a common test used in the neonatal ward which can tell a lot about a baby’s health) or to test for infection that their tiny bodies couldn’t make blood quick enough. When the nurses explained it like this, it didn’t feel so distressing. Before Charlotte’s waters went I felt very queasy at the sight of blood being taken. By the end of the summer, testing their gases didn’t faze me in the slightest.

Charlotte and Esme were both jaundiced. This was associated with preterm delivery. Charlotte and Esme received phototherapy for eight days. Sometimes they wore sunglasses to protect their eyes, other times they wore a bandage which covered all of the face except the nose. It was difficult not seeing their faces; Were they awake? Were their eyes open? Were they happy? You can tell a lot from looking into someone’s eyes. I didn’t realise how much this upset me until one day when Esme’s nurse must have recognised the way I was looking at her whilst I was comfort holding her. She came up to me and said “Do you know my son was born at 27 weeks? I remember hours of looking at him, desperate to see his precious face, always wanting to have a peek to see if he was ok.” That’s all I wanted, a little peek at her pretty face yet I couldn’t. It felt a lot longer than eight days when I was denied seeing my girls’ faces.

Both girls were ventilated for thirty three days. The first ventilators the girls were on, high frequency oscillation ventilation and conventional ventilation, controlled their breathing. Although this kept them alive, it wasn’t good for their lungs and stretched them. Charlotte was incredibly poorly when she was born and overcame so much. On the 18th July she developed a pulmonary haemorrhage and was diagnosed with respiratory distress syndrome. Before going to sleep at night and during my many hours of expressing, I silently cried and prayed for her to be ok.

Charlotte

Esme

The next stage is the continuous positive airway pressure ventilator or CPAP; this applies mild air pressure on a continuous basis to keep the airways continuously open. For many days, Esme was very close to transferring her ventilation to the CPAP ventilator but she kept tiring too quickly and desaturating (low blood oxygen level). I remained patient and didn’t get frustrated when the girls took a step back with their breathing. I knew they were making progress and when their lungs were ready they would make those leaps. Esme stayed on CPAP for seven days and Charlotte for sixteen days. Esme being the calmer twin didn’t mind the obtrusive breathing mask but Charlotte was frustrated by it. She was constantly trying to rip it off her face. She made me smile, she had such personality from the start and knew what she wanted. From CPAP they moved on to high-flow oxygen therapy. It felt such a huge step to see the girls progress to high-flow. It was half as invasive and I could see nearly all of their beautiful little faces.

CPAP – Above: Charlotte, Below: Esme

At twenty eight days, they were both diagnosed with chronic lung disease. I was not too worried about this. My close friend had told We were informed they might need an inhaler and due to their damaged lungs they might come home on oxygen. This thought, however, did scare me. I told the nurse “It’s ok, I don’t mind waiting until they no longer require any oxygen.”

High-flow: Left: Charlotte, Right: Esme

Throughout the summer the girls had regular eye checks. We were advised by the nurses it would be better not to be there when the optometrist came as the checks aren’t pleasant. The optometrist was mainly checking for ROP (retinopathy of prematurity, a disease of the eye affecting prematurely born babies). On their first check, both girls were fine, however on their second check, Charlotte had developed grade 1 (mild stage) in her left eye. This could resolve itself or it could worsen. I tried not to let this stress me too much as there were things that could be done if it did develop but I couldn’t help feel anxious when learning ROP could also lead to blindness in serious cases.

At a later meeting with the consultant, he said “I’ve been reading back through Charlotte’s and Esme’s notes and you’ve had a really tough run at it.” We nodded our heads in agreement. Before writing this post, I read through both girls discharge letters. I found the letters tough to read as I saw it in black and white just how poorly they were and what they overcame during their time in the neonatal ward.

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