** Trigger ** some pics may be upsetting to see
Thursday 20th July…Pre Op observations…
So, this is the day we have been waiting for, preparing mentally for this moment. A surreal realisation your baby will be going under and going through major heart surgery! I’ll be honest on this day I was still thinking something will get in the way and it not happen. The previous day she had a high temperature of about 38 maximum, but was ok in herself… ‘here we go again…’ I thought. Anyway, Darren still went to work as normal on that Thursday and I took Harry into nursery early to get in to hospital for 11am. We settled into our bed space for the day seeing how things panned out as in will they still go ahead with the op. Right now, I had felt cool as a cucumber not really thinking too much into the next day.
There was a little boy about 8 in the bed opposite Freya waiting for his procedure, and I remember watching his parents go with him and come back, the mum visibly upset, which then had set myself off because that will be me in the morning taking my little girl down to theatre… The poor lad come back and was so sick from the anaesthetic. I just felt so sorry for him because he was so upset with feeling like crap. I wanted to hug him! Nerves starting to creep in to me…
As the day had progressed with regular normal observations they do, temperature/heart rate and breathing, it had come to dinner time where the decision was made to just go ahead with the op as it all was safe to do so with the anaesthetists’, surgeons’ and doctor’s confirmation.
Darren had come straight from getting Harry from nursery to see Freya and I in hospital. An hour or so had passed and we were greeted by the surgeon’s team with the consent form and information on the procedure and risks.
I remember them talking through it all holding the consent form in front of me. ‘DEATH’ was the first thing listed of what could go wrong. I couldn’t stop focussing on that word. As much as I tried to stay positive you always get that horrible gut wrenching feeling that the small percentage that don’t make it through could potentially happen to my little girl.
After reading through the consent form with everything involved etc I got to the end where I had to sign it. Done. This is it. It is happening tomorrow and she will be the first to go down.
Before bedtime I had to wash Freya with special gel wash and again with it in the morning. Through the night I could feel my anxiety starting to flare up. That horrible sick feeling in my stomach rising up into my throat at the thought that my baby is going through a major procedure, it started dawning on me more as the hours passed. I didn’t sleep too well that night either, don’t think any parent would giving the situation.
It got to 7am, I woke up and HELLO ANXIETY! In all its glory. Yup, off to the toilet to be sick (horrible effects of my anxiety). Feeling like total shit with worry, walking back to Freya’s cot side, her nurse had asked me if I was ok, I wasn’t, I’m totally overwhelmed with what is going to happen. I just welled up as I went back to Freya, I took deep breaths thinking I need to stay strong, she’s going to get through this and we can start to look forward in her development. I got her washed and into her gown they had given me. She looked so sweet.
Waiting anxiously to be called to say they’re ready, I held Freya in bed, feeling emotional, making the most of the cuddles as I didn’t know when I could hold her again. It felt like forever until we were called.
A porter was waiting with a bed ready to wheel her down, I chose to sit on the bed cuddling her all the way down to theatre. By the time we got to the theatre waiting room it was about 9.30am. In the waiting room, we waited further for them to do have a briefing with the team about Freya. Then…all of a sudden whilst talking with the nurse who accompanied us down, I came over all funny, ‘Can I have some water I feel a bit unwell…’ yep I was about to pass out. Nurse’s worried, they wheeled us through into the corridor of the theatres as it was cooler. Along come the team of surgeons and the anaesthetist, who was bloody hilarious may I add, all worried thinking what’s wrong with me! It was time for Freya to go with them to be put asleep. I chose not to go in because it would upset me more and I really wasn’t in the right state. I passed Freya to the surgeon, and got down off the bed (which was really high up so I had to slightly jump down, being only 5ft and a half) to which then the anaesthetist laughed and joked at my height! He was a great mood lifter. I didn’t say goodbye it was just ‘See you later baby’ because I know she was getting through this! I then gave her a big kiss and I was then wheeled back out in a wheelchair back to Freya’s Cot. Typical for that to happen to me. I could only laugh about the situation.
I was then moved out into a parent room whilst they freed the bed space up and I waited for Darren to come after dropping harry at nursery. I tried to just sleep and rest whilst she was there. I felt bloody awful. Having nurse’s come in and out updating us and checking up on myself the hours felt long but it flew by.
‘The surgeon’s here to talk to you.’
It had only been 3 and a half hours since I left her, what has happened? Something gone wrong? We waited in the parent’s quiet room. The surgeon just walked in casually eating a biscuit ‘What happened to you earlier?’ He was more concerned about myself than Freya! He continued…’ye it went good, she’s doing well and just being hooked up to the machines in PICU…you’ll be able to go and see her in about an hour or so.’ How can he just be so casual about it all!
About three hours later we were able to see her. My anxiety started, my heart beating dreading what we are about to walk in and see. I was expecting to see her in a bad state, not a very nice sight. We entered PICU and straight ahead in bed 3 was Freya. Machines, monitors and other stuff around her. I had felt emotional walking up, seeing other little ones in there as the room was all open and not sectioned. We got up closer and I was just looking at everything that’s helping her. Her face all puffy looking like she had gone a round with Mayweather. Still feeling a bit fragile I sat down next to her bed and just looked, taking everything in. I didn’t cry. I don’t know why I didn’t. Was I weird for not crying? Is there something wrong with me that I haven’t balled my eyes out seeing her lay there sedated to the max? I had text my best friend to ask if I’m strange to be not crying seeing her like that. She reassured me which is something I needed.
Freya had woken up the next day around lunch time. She was doing so well and the Sunday they were happy for her to move back up to E1. I felt so happy and excited that maybe she would be home by the end of the week.
‘You need to come in Freya’s not well…’
That call you dread. One of the one nights I didn’t stay at the hospital something had happened. 7am, Half asleep and panicking what has happened. Thinking the worse. I ran outside and jumped over to my neighbours’ house to see if she could sit in whilst I drove over to the hospital. Luckily, she was up and able to do so.
That drive over to the hospital was one of the longest. I was thinking she had gone. Overthinking at its worst. I got to the hospital after 40 minutes getting through the morning traffic, ran through and into the lifts and into the ward where I was faced with the nurse who was looking after Freya at the time and the cardiologist. They had a look of sadness in their face looking at me. I just broke. I was on my own (waiting for Darren to come in). Those couple of seconds felt like minutes before they said, ‘she’s doing ok…let’s go talk in a private room…’
They then had explained that the nurse had turned around for a second to grab something, turned back around to find she had pulled her NG tube out which then caused her to go into a cardiac arrest. It was due to it being so close since having the surgery it had aggravated the area and caused the heart to go into shock and stop. They were resuscitating her for 10-12 minutes. This literally was where her life was saved. It was so lucky the nurse was there and quickly reacted to this episode. It could have been a whole other story and we wouldn’t have had Freya cuddling in our arms today. I thank the nurse who acted so quickly and saved our baby girl.
We were taken back down to see Freya back in PICU where she was again hooked up to machines helping her breathe and keeping her sedated. I couldn’t be strong and put on a brave face. Tears came strolling down my face and I couldn’t hold them in… my poor little princess looked awful, she looked worse than after the surgery. She still wasn’t out of the safe zone yet. Darren and I had then gone to get a drink whilst they did some observations on her, walking out holding tightly onto Darren’s’ hand I just cried again. I felt so helpless. I was scared to lose her. It didn’t take too long for her to bounce back. Even being sedated still the next day, her little helicopter legs still flung about and she was opening her eyes slightly. (Apparently Downs can take a lot of drugs to be sedated, basically she’s a super human!) They had said to us that there was a risk that this episode may cause her brain damage. Great, what else does she need thrown at her! She had stayed in PICU for a further 2/3 days being observed closely and luckily no sign of brain damage!
The nurses in PICU were just amazing throughout. From talking to me about it all to helping keep Harry entertained when I had to go in taking him with me. That hospital is full of brilliant doctors and nurses who I couldn’t thank more. There was a student nurse especially who just immediately acknowledged Harry and started drawing and talking with him keeping him busy whilst I spent time with Freya. I always remember also that when Freya went back into PICU Harry just flirted with the nurse working with the baby in the next bed. Next thing I knew he was being given the apron, gloves and stethoscope… then more nurses/doctors coming over giving him a hat and mask. He definitely lit up the room with his cheeky self, even for the other parents in there making them laugh.
She was then moved up to high dependency on E1 where she had just thrived. By the Sunday we had walked in to a totally different baby. She was off oxygen! This girl is a fighter and someone was definitely keeping her with us! From then on it was just getting her feeds back up and getting her ready to come home.
With a couple of meetings with the Speech and therapists coming up with a feeding plan we were ready to come home! On goes her little tutu baby grow and cute hair band and we were ready to leave! I could have danced out of there! No more hospitals…for now.