Maisie’s heart surgery
This time last year Maisie was recovering from open heart surgery. The weeks and months prior to it were challenging and exhausting, something I have written about in a previous post(Our biggest challenge so far) and while I dreaded when the time would come for her surgery, I was immensely relieved to get the call to confirm the date. For me it felt like a huge weight had been lifted, there was light at the end of the tunnel.
Maisie was admitted to Crumlin Childrens Hospital on May 4th 2021. She was four months old exactly. Her surgery was scheduled for the following day but this day would be very difficult. The nurses couldn’t get a line in Maisie’s vein. They tried twice before we were sent back to the heart unit where another nurse did the same. Then (in her words) she called “The Top Dog”, an aneasethist doctor who also failed. At this point Maisie was so upset that tiny stress spots appeared on her forehead which stayed for days. It was distressing for me to watch and I wish that I had stepped in to say enough was enough…but I guess not many parents do this in the presence of doctors or people in authority?
That evening I held a calm and contented baby while another doctor came and told me all the risks associated with heart surgery, small that they were. He was just doing his job but for the second time that day I felt that everything was out of my control. A kind nurse helped ease my worry telling me they have to say these things and all would be ok. The following morning we received the news that Maisie’s surgery would be postponed until the afternoon having been told she would be first in theatre. It prolonged the worry but at least it was definitely happening as sometimes an emergency can postpone surgeries. So more cuddle time with our sweet baby and eventually a gown was brought. It was tiny. I sometimes imagine that tiny gown with the teddy bear pattern reminding me of the enormity of what happened that day. I think of other parents who have gone through the same and others who have yet to do so. I carried Maisie to theatre in my arms. Her beautiful eyes looking at me the entire time. I couldn’t have loved her more. “You are beautiful you are strong” I kept saying to her.
I handed her over to The Top Dog, not her again I thought, even though she joked that this time she wouldn’t be sticking a needle into her. They inserted the line once Maisie was under anaesthesia..why they hadn’t decided this before traumatising her five times is unknown to me.
Upon leaving another doctor asked if I was ok. I did feel ok, our baby was in good hands and we put our faith and hope in those doctors. We met our surgeon then briefly and were reassured by his words and presence.
It was the longest day of my life. Luckily we live close to the hospital so we distracted ourselves with the other children but I was anxious anticipating the call with an update. Finally I got the call. Surgery went well. Maisie was still in theatre and would be sent to ICU but those three words were all I wanted to hear. She was going to be ok. We met Maisie’s surgeon that evening. I wanted to hug him but thought it mightn’t be appropriate so we thanked him profusely. It had been a big hole, there was a lot of work to do, he said. Gratitude and relief, that was all.
I had been told that Maisie would have a lot of tubes coming out of her. I had viewed photos of other heart babies online which helped prepare me for the shock of seeing her. Despite this I was taken aback by the sight of our beautiful baby. She looked so vulnerable and I was distressed by the sight of her little hands tied down to prevent her pulling off the oxygen mask. I arrived just as she was waking up and she became upset. It was awful. But I was there for her. And she calmed down soon after. I stroked her hand and spoke to her. Thankfully the mask was removed not long after. I visited her again later that day and she was settled.
The next morning I went to see Maisie in ICU as expected but saw an empty bed. Our amazing girl was well enough to go to the main ward. For the next nine nights Caolan and I took turns to stay with her. The Heart Ward in Crumlin is lovely. Maisie had her own room with a side couch that acts as a bed for the parent. Her first night went well and to my relief she was looked after by a wonderful nurse, Rebecca who had previously cared for Maisie when she had the Ng tube inserted. The days and nights that followed got tougher. Maisie’s pain relief was reduced and she was still vomiting, especially if her formula was administered too quickly. But then, one of the painful drains was removed and slowly her form improved, the other drains were taken away and she even managed a smile or two.
Looking back we knew how lucky we were that Maisie experienced no complications during her surgery or recovery. The staff in the hospital are incredible. You get the impression of a great camaraderie yet it’s such an intense environment to work in. They made our stay as comfortable as possible. One of the hospitality staff gave Maisie a hand knitted blanket. A lovely child therapist fitted a musical mobile above her bed. Her cardiologist Dr. Franklin is wonderful. We can’t thank them all enough for looking after our daughter and we are very relieved that it is highly unlikely Maisie will ever be admitted to the Heart Ward again.
