If you missed part 1 of Chloe’s heart story, you can find it here: PART 1: SURGERY
I had to catch my breath when I saw little Chloe all wired up on that huge bed. She was hardly recognisable with all those tubes and wires everywhere and the ventilator on her face didn’t help either. To give her body a complete rest, the ventilator did all her breathing for her while she remained sedated.
The following 24 hours after surgery were definitely a roller-coaster ride. The repairs made to Chloe’s heart caused the pressure in her body to change so her kidneys stopped working properly. To help her out, she was started on dialysis.
I was very lucky to be given a room at the hospital with my own bathroom. I would spend the day mostly sitting by Chloe’s bedside and at night, I would sleep for a few hours and then go back to Intensive Care at about 1.00am for a couple of hours. It was hard but I tried to get a few more hours sleep before the morning nurse change over at 7.00am. As I sat by her bedside, I spent a lot of time writing Chloe’s birth story. It was something I really needed to do and it was actually the catalyst for me starting this blog. Will I share Chloe’s birth story? One day. Maybe.
On the Friday (2 days after surgery) Chloe’s sedation was lifted and she started taking a few breaths on her own. The ventilator was removed and replaced with a nasal cannula which provided her with much needed oxygen. At about mid-day, Chloe finally woke up! She couldn’t open her eyes because they were still puffed and swollen but it was so amazing to see her stirring and making her little baby noises. At that point, two of the drains in her chest were removed as well as the IV in her neck.
Andrew and Emma came to visit us that evening and the three of us went out for dinner. I was worried about how Emma would react seeing her baby sister in the state she was in but Emma wasn’t frightened or freaked out at all. She hopped up on a chair and leaned in to stroke Chloe’s hair. Two sisters. So much love.
While Chloe was in hospital, we were all separated. Andrew was still going to work and then visiting Chloe and I for a couple of hours most nights when he finished work. Emma stayed with my parents but went home with Andrew for the weekend. I hadn’t seen Emma for 3 days already and I wasn’t sure how many more there would be. Being away from Emma was tough. Having Andrew and Emma around me for dinner that night made me feel so safe and warm and as I think about that evening and write this, I can feel that same feeling again. I didn’t realise how much I appreciated our ‘togetherness’. That coming home and being together part that I unknowingly took for granted. I realised that night that just being with my family was as essential to me as the air I breathe.
After dinner, Andrew and Emma dropped me back to the hospital. It was weird saying goodbye. When I returned to Chloe’s bedside after I had showered and changed into my pyjamas (yes, at night I walked around the hospital in my pyjamas) I was very excited to hear one of the nurses exclaim – “She’s done a wee!!” So the dialysis was stopped. I was so happy!
Later that night, things seemed to be looking good so the nurses allowed me to try feeding her. She was being fed small amounts of my expressed milk via a nasal gastric tube to keep her tummy from being empty. It wasn’t much or for long but the fact that I was actually holding and feeding her again was so comforting. I just knew that she was getting better!
|Chloe resting. There’s that mohawk!|
|Chloe waking up from her sedation after having the drain for her lung put in|
Even though the fluid around her lung was still an issue, Chloe was still moving forward and the final drain from surgery was removed from her chest. But the best news was that her heart had maintained a regular rhythm so the pacing wires were also removed. Hurrah! I was so happy that Chloe would not be burdened with having a pacemaker for the rest of her life. Such a huge relief!
The Cardiology Ward
On the Monday evening (5 days after surgery) Chloe was finally given the all clear to move from intensive care into the ward. As much as I had enjoyed my own room and being able to get some rest when ever I needed it, this was the next step towards going home so I was very happy.
|Good morning happy Chloe!|
I had hardly slept since Chloe’s surgery and this well and truly continued for the next 5 days while we were on the ward. I don’t know how but Chloe still slept straight through the night, even when the nurses came to drain her lung. Wish I could have said the same for me! We were in a 4 bed ward and I was lucky enough to meet two amazing Mums – both named Bec funnily enough. They opened my eyes further to the amazing world of parenthood. Staying on the ward was not pleasant at all but their company made it worthwhile.
Two days after we shifted onto the ward, Chloe started to look more like herself again. One of her IV’s were removed from her hand and her oxygen levels had returned to normal so the nasal cannula was removed. I was given the go-ahead to start feeding her the Monogen formula from a bottle and this was so hard. The stuff smelt and tasted disgusting and as I still hadn’t stopped producing milk, Chloe could smell me. She would scream every time I tried to feed her. I felt so sad for Chloe. After everything she had been through, the only thing she wanted she couldn’t have! It was heartbreaking. After a while though, with the help of the nurses (and visitors) who took over her feeds, Chloe got used to the new formula.
|You wouldn’t know it but Chloe lost 500g after surgery|
The nurses on the cardiology ward were just as amazing and lovely as those in Intensive Care. There were several times when I returned from lunch to find Chloe missing from her cot and in the arms of one of the nurse’s behind their station having a cuddle. “She’s so lovely and cuddly!” they would say.
|Having cuddles with one of the nurses|
It was hard going being on the ward. It was noisy and busy and exhausting and I was completely over the awful hospital food. One day, I had a visit from Maree from HeartKids. I was so pleased to see her and even more pleased when she offered to buy me lunch from a cafe nearby. It was a Godsend to have her support and the gifts that she brought for Chloe from HeartKids and my lunch really brightened up my day.
HeartKids are an amazing organisation who provide support, encouragement and hope to families of children with Heart Disease. They also work hard to raise awareness and vital funding for research into the causes of this chronic disease that affects so many beautiful children.
On Friday, 9th December (10 days after surgery), Chloe had an ultrasound to check on the fluid on her lung and I was so happy to hear that the fluid had returned to normal levels and that we could shortly go home! I got us both dressed and packed and waited in anticipation for the visit from the Doctor. He laughed at my eagerness to get out of there and gave me the OK to take my little angel home! Hurrah!!!!
|Happy to be home with Daddy!|
It was so amazing to walk out of those hospital doors that afternoon and to put Chloe’s surgery behind us. The next 8 weeks following surgery were hard work. We had to stop Chloe from rolling onto her tummy because her sternum was still healing so I had to have my eye on her at all times. We also had regular cardiology check-ups at PMH and when I met with the surgeon, I was so happy and relieved to hear that the surgery had been a huge success. How do you thank someone who has done something as amazing as this? I didn’t feel it appropriate to give him a box of Favourites and a bottle of wine to say “thanks for saving my daughter’s life”. That just wouldn’t have been enough. Nothing would have been. So I just gave him a big hug instead.
As scary as the whole experience was, I realise how lucky we are. There are so many babies and children battling Heart Disease and there are some who have sadly lost their fight. My heart goes out to all these families. We are blessed that she is still with us and that she has had no complications so far. I will never take Chloe’s recovery for granted.
|Chloe with her Heart Beads from HeartKids|
|Each bead represents a procedure, treatment or milestone in Chloe’s journey|
I would like to conclude our story with a very big heartfelt thank you to all the wonderful Doctor’s and nurses in Intensive Care and Cardiology at PMH, the amazing Surgeon who fixed Chloe’s heart, HeartKids (especially Maree) and to all my beautiful family and friends who supported us through this whole experience. A big thank you also to Clare, Amy and Karen who came to give me some company during our stay in hospital. Thank you. xoxo
I had tears in my eyes reading Chloe’s surgery story! She’s so lucky to have you for a mum Suzanne, you’re amazing!
x Jen Szijarto