The Story of Gracie Mae Rengger

Written by mum Jessica

Gracie was born on the 30th September 2022, weighing 6lb 4oz and this is where our journey began… 

Within 72 hours of Gracie being born and spending time on NICU, we found out Gracie had Tetralogy of fallot, VSD and an ASD, which is all congenital heart defects. This was when we were told she would need a very important open heart surgery at 6 months old to fix her diagnosis.

Through advice and learning about it all, we found out 80% of people with this diagnosis have this operation and carry on to lead normal happy healthy lives. When Jordan and I found this out, we knew it was going to be a very tricky, emotional, and tiring journey but with a light at the end of the tunnel.

Three weeks later in NICU, with myself learning how to do Nasogastric (NG) feeds and after Leeds Children’s Hospital confirming Gracie’s diagnosis, we were finally able to take Gracie home and start as a family of four. We were able to accept lower sats due to how her heart was formed, as well as knowing how weak she was – that’s why she was NG fed due to her tiredness.

NG feeding is where a narrow feeding tube is placed through your nose down into your stomach.

We had a lovely cardiac specialist nurse, Nikki, whose role was funded by CHSF. Nikki came to the house every week to make sure Gracie was maintained at above 75% and gaining weight nicely. She was my go-to nurse on standby, so if anything was wrong with Gracie, we knew we could call her. We also had open access to the Rainforest Ward at Grimsby hospital in case we were worried or concerned about anything.

Here we had a good month at home until the break between Christmas and New Year. Gracie turned really poorly, and we found out she was diagnosed with bronchiolitis. We weren’t admitted as there was nothing they could have done for a newborn, but we were sent home knowing that this could be the start of a very long journey in hospital for us.

Two weeks later, Gracie gave us a huge scare. She was still fighting on-going infections as well as her SATs dropping to below 60%. This is where we found out she had started to have ‘tet spells’.

Some babies with Tetralogy of Fallot suddenly develop deep blue or grey skin, nails, and lips. These episodes are called tet spells. Tet spells are caused by a rapid drop in the amount of oxygen in the blood.

We were rushed from Grimsby to Leeds Children’s Hospital’s paediatric intensive care unit (PICU).

Here Gracie was taken straight off to the Cath lab to insert a small plastic tube to open up the thinner part of the valve within her heart and to keep it open for the blood supply to flow back to how it normally would. Afterwards, Gracie’s recovery went really well. We were out of Leeds within a week and, again, we started our lives as a family of four – round 2!!

Between January and May, Gracie lived pretty much at Grimsby hospital as well as going back-and-forth to Leeds Children’s Hospital battling a range of respiratory infections. As her heart was weak, the infections kept coming back continuously, and her little body was unable to help them without support. Here Gracie was battling a range of respiratory infections which included: Covid rhinovirus, pseudomonas, bronchiolitis and Norovirus. She continuously needed oxygen as well as medication to help battle these viruses and needed 24/7 nurse care.

After a 10 week stay at Grimsby Hospital…the end of May soon came around where Gracie was finally transferred over to Leeds Children’s Hospital where they were going to do another Cath procedure. This was to see whether they could extend the tube that they had inserted in January, to see if that could help her in anyway…

They also needed to find out why Gracie could not be weaned off oxygen without her SATs dropping below 75%, as well as why she wasn’t getting any better… Gracie went down to the Cath lab but this resulted in them not doing anything and returning back to the ward due to the heart twisting too much to get to the tube. Back to stage one of not knowing what was going on.

We then found out they were going to have a meeting to decide whether Gracie was strong enough for her full heart repair. Gracie also needed a CT scan to find out why we could not wean any oxygen from her. A couple of days later, after the CT scan, it showed compression on her airway, and the cardiac surgeons agreed to put her on the acute list for her full heart repair. Within this timeframe, Gracie remained at Leeds Children’s Hospital on the ward, waiting for her operation. She was still on oxygen but just being her happy normal general self. When we found out her operation date, Jordan and I went in the day prior to talk to the cardiac surgeon who would be doing her operation. They explained all the pros and cons, how long it would be, and to also sign a consent form… Gracie had to have three detergent washes (sterile for surgery) and a final sleepover with Nanny before her big important day.

This meant they not only had to open her from the centre of the chest, but they would also need to open her from the side to remove the vascular ring. Me and Jordan were now thinking of the worst, not having a clue what was going on in theatre. 7.5 hours later we get the call from the cardiac surgeon to say the operation is complete. The vascular ring has been removed. No complications apart from the vascular ring being found and Gracie will be onto PICU ward within the next half an hour.

Once we got up there, we saw Gracie laying on the bed. She was on a ventilator with loads of wires and tubes and equipment all around her – it was a very scary moment …but the relief of seeing SATs of 96.97% on the machine was amazing! I cried with joy, knowing that we have had such a rollercoaster. This was finally the light at the end of the tunnel, and we could hopefully go home within a week with a happy healthy baby girl…

They tried to extubate within 24 hours, but Gracie’s SATs were dropping low on high flow oxygen. She had to be re-intubated to have another few days’ rest, and they would try again in three days’ time. Three days’ time came along. She was extubated again and was doing well. However, at this point we found out Gracie had contracted another respiratory infection, rhinovirus, which made her SATs go doolally again. We were at the stage where Gracie had to be intubated again – round three. 

From then we struggled to wind down the ventilation pressures and the PICU consultants, cardiac surgeons, a specialist heart nurses had to have a big meeting to find out why. This resulted in giving Grace a further two weeks and if there was no progress, we knew something was wrong, so she would have to be taken down for a bronchoscopy to find out why.

In regard to her respiratory infections, she always used to suffer with a right upper lung collapse throughout x-rays. The doctors and nurses could see it used to go up-and-down like a yo-yo. This was due to the constant respiratory infections and this was where they are found out it had done some permanent damage. The bronchoscopy was done under anaesthetic in theatre and we found out that she had a collapsed airway and a flattened windpipe. The reason for this was because her aorta was applying pressure to her lungs, so Gracie was then booked in for an aortopexy operation. This is where they move the aorta away from the chest wall to hopefully lighten the airway pressure. We were told if this didn’t work and ventilation was still unsuccessful, Gracie would’ve had to have a tracheostomy.  

Tracheostomy is a procedure to help air and oxygen reach the lungs by creating an opening into the trachea (windpipe) from outside the neck. A person with a tracheostomy breathes through a tracheostomy tube inserted in the opening.

The day came for Gracie to go down for her aortopexy, and within a couple of hours the surgeon called me to say it had all gone well and smoothly and Gracie was back on PICU. Again, another big sigh of relief for me and Jordan knowing that again, this was the light at the end of the tunnel and, again, we would be on our way home to be a family of four.

The next morning, we got a dramatic call from one of the staff nurses saying we needed to get up to PICU ASAP. Gracie’s SATs kept dropping to 50% or below. No one knew why and in the end she was 100% oxygen on the ventilator, followed by a nitric gas which helped open up blood vessels for oxygen to flow better (this was also at maximum amount).

At this point, Gracie was still reaching SATs of 85% – nowhere near what she was a couple of weeks ago. We knew we really need a CT scan; however the nitrogen gas was not transportable so we did a trial run – half an hour without it. At this point, Gracie was too unstable to move. We found out then she was back off to the Cath lab as they could do it via a Cath procedure. A Cath procedure normally takes between 45 minutes to an hour and so me and Jordan knew five hours later that something wasn’t right or was not good.

We finally had an in-depth conversation with the cardiac surgeon, the Cath lab surgeon and a PICU consultant who told us that Gracie’s right ventricle in the heart had been blocked. They rushed her into theatre to reverse the aortopexy she had had the day before, but we found out that made no difference. At this point, we knew Gracie was critical.

We were told that she was not allowed to be moved due to being too unstable. Jordan and I had to say our goodbye’s again to her in theatre, where we were told for family to come up because we didn’t know if she will make it out the theatre doors – we were told to prepare for the worst. Gracie was in the operating theatre for 16 hours, resulting in finally coming back to PICU and going down to the Cath lab again in a further six hours’ time to find out whether the operation to was successful. That afternoon we found out it wasn’t.

When Gracie finally came back to PICU, she was placed on a machine called ECMO where the machine was doing the work that her heart and lungs would be doing. The machine was there to give her heart and lungs complete rest for up to 10 days and honestly those 10 days came around pretty fast.

Before we knew it,we were back in another room, Monday morning, having another conversation with PICU consultants and cardiac surgeons. This was where we had another scare as we were told it was time to get Gracie off ECMO, redo the aortopexy operation and to hopefully find a balance. At this point, me and Jordan knew how poorly Gracie was and, again, they told us to prepare for the worst – with an 80% chance Gracie wouldn’t make it back to PICU alive.

At 4pm I had a phone call from the cardiac surgeons to say Gracie managed to come off ECMO successfully and we would be able to see her back at PICU within half an hours’ time. She managed to surprise everybody considering how poorly she was coming off ECMO and carry on fighting. I’ve never seen so many machines, tubes and wires on our Grace in all my life. Gracie was on 16 different medications, followed by blood, fluid and painkillers. Once again, Gracie surprised us all, and once again another light at the end of the tunnel and once again one step closer to home. 

We were doing ever so well until one day Gracie’s tummy and liver started to build up continuously with fluid, and it was getting bigger and bigger by the day. The medicine used for this type of condition was not working and they had to put a drainage incision into her tummy to release the fluid. Due to the pressure of the fluid on Gracie’s vital organs, Gracie SATs were dropping again to the point where we had to put Gracie on her front to help with the pressure.

We got to the stage where we were losing 2000mls a day (nearly a full bottle of cokes worth a day) and when me and Jordan arrived back at the hospital, Gracie went into cardiac arrest. It was so weird! She’d had such a good weekend. It was like she waited for us to arrive and BOOM, off she went. They brought her back, however, they realised the cardiac arrest was due to the blood vessels being starved of fluid due to the fluid all being retaining in one area.

Once again, another scary night ahead where me and Jordan didn’t sleep as we were sick to death with worry. The morning came and we found our Gracie had a stable night but we were pulled into a room for another very important chat. At this point, Gracie had maxed out all the medicines, all the blood pressure medication and all the painkillers and now this was a conversation where me and Jordan had to agree with the doctors that there was nothing more they could do. If Gracie had another cardiac arrest we would have no option, but to let nature take its course, for Gracie’s dignity.

This was when we agreed to do a respect form. This is where if Gracie’s SATs drop and her heart rate stops not to perform CPR. Again, the family were called out to come and say their goodbyes for the third time round. She was put into her own room, in a big girl bed where everyone could get on and have a snuggle and be close to her… However, a couple of days later Grace surprised us all once again by fighting through and the amount of fluid she had was coming down by around 200mls a day. Gracie was showing signs of improvement. She came off all her blood pressure medication and paralyse medication and was slowly weaning down on her painkillers. It was like it randomly all kicked in at once, she just took her time getting it to work… 

At this point, me and Jordan had a very in-depth chat with Gracie’s consultant, and we agreed that with Gracie now doing so well, we were able to take the CPR respect form off… Again, just as we thought there was light at the end of the tunnel with a very positive and good conversation with the consultants… that night Gracie started having seizures. They were ongoing and continuous to the point where very strong seizure medication was the only thing able to help Gracie stop these. Due to the seizures, Gracie was then wheeled down that night for another CT scan to find out what was going wrong.

A couple of days later, me and Jordan saw the PICU consultant neurologist. We had a very in-depth chat about what was happening with Grace’s brain.

Here we were told the bright patches were due to her latest resuscitation episode where the brain was starved of oxygen for a couple of minutes, however, it was survivable. It would mean that Gracie would’ve lived with cerebral palsy and me and Jordan were happy with that considering everything else she had been through! We knew we would give her the best life with whatever she had. Then she spoke to us about Gracie’s brain, stating that she had substantial swelling which would just build and build and build, to the point where her brain will then start to cone. This means that Gracie’s brain would start to move to compromise the pressure. PICU class this situation as ‘terminal’.

This was when me and Jordan knew that was it. We knew after everything that’s gone on with Gracie, there was literally nothing more they could do, and there was no light at the end of the tunnel.

After a very heartbreaking chat, we agreed that for Gracie’s best interests, her dignity, her pride and her fighting attitude that she was too tired to fight anymore. We agreed that there was nothing they could do for Gracie, and we had to start end of life care. Here me and Jordan met up with some lovely people from Martin House based in Wetherby who deal with end-of-life care facilities, and they would have looked after Gracie until it was her time to go. At this point, we made memories! Lots of memories! We made stamps of our hands and our feet, making them into little butterflies and bees. Me and Jordan did some model making of her holding mummy’s and daddy’s fingers which she used to do! We had lots and lots of cuddles, and dances and singing to our favourite songs. As well as all the nurses had a chance to say goodbye to Gracie.

Before you knew it, the dreaded day arrived where we had to move Gracie from PICU to Martin House hospice. Gracie had a pretty pink babygrow on with little pink Ugg boots and a little pink cat, she was all wrapped up with her teddies and blankets.

Gracie lived on PICU for four months. Gracie touched many of the nurses and consultants’ hearts and they made a lovely picture of a tree with every nurse’s fingerprint acting as a leaf. On Gracie’s last journey, they lined up through the corridor, hugging, blowing kisses and clapping for Gracie. Gracie took her final walk out of PICU and all the nurses knew how much of a fighter she was! 🥰🥹🙌🏻 

I remember I was with my sister in the car on the way to Martin House, and I had every emotion running through my body. I knew by that evening; my little girl was going to go over the rainbow and there was absolutely nothing I can do about it. It was one of the hardest journeys I’ve ever had to make however once we arrived we settled down and Gracie was placed on her dad for a final cuddle.

We agreed for all machines and wires to be taken off. That was when Gracie was free, and she would go naturally when it was her time to go.

As soon as the ventilator was taken off, I remember Gracie doing the biggest yawn ever! I think that was her telling us that she was too tired now and it’s her time to go. At that point, I picked Gracie up and we went and sat outside in the garden. She was cuddled in blankets, and I had her on my chest. We watched the leaves blowing in the wind and the squirrels taking the apples off the trees. Within five minutes, Gracie took her final breath and went over the rainbow. 

Close family and friends were there with us, and everybody had a chance to say to say goodbye to Gracie before she had to go.

Me and Jordan were open and honest with Gracie’s story from the start. We had people follow us and our journey from all over, sending strength and courage to keep going for our little lady. We knew we wanted to raise awareness for anybody going through, or who was in the same situation as ours, knowing they are not alone. 

Gracie was loved by everybody. Gracie did everybody so so proud. Gracie deserved the world and more – me and Jordan love Gracie as big as the sky. We will do everything in our power to make her proud, to keep her name going and to let her legacy live on forever. If anything, through Gracie story, Gracie has shown that no matter what situation you’re in, no matter how bad it gets, never give up.

All this along with chats, meeting up for coffees and for a general bit of normality outside of Gracie’s situation. It’s people like the Family Support team at CHSF that you don’t realise what they do for you until you are actually there in that moment. Me and Jordan know how much they helped us and how much they meant to us through Gracie’s entire life.

We know that without them, we really would’ve struggled as a family, considering we live 2.5 hours away from Leeds. One example is when we took Gracie in for a routine check-up. Gracie’s SATs were below 75% which meant we had to stay in Leeds. We had absolutely nothing with us apart from Gracie’s changing bag and CHSF came up, had a chat and provided us with everything we needed to stay, such as toiletries, food, a change of clothes, p.j’s and so much more…

In Gracie’s honour, we will carry on Gracie’s name. We will carry on doing her proud, and we will carry on raising as much money as we can for this amazing charity who helped us throughout all of Gracie’s life.

In regard to the CHSF-funded accommodation, a hotel in Leeds was around £100 a night, estimated around £700 a week… That’s £2,400 a month we would have had to spend on hotels to be near our Gracie! It’s crazy! But CHSF gave us a huge gift with their free accommodation which we stayed in for around 16 weeks in total. Without this, again, we would have really struggled!

At the time of writing this we have already raised nearly £3,000 since Gracie’s death!

As well as donating to CHSF, we also bought PICU some Gracie Mae sound machines.

Gracie was always known for her continuous White Noise, spa, music, or Disney tunes and so we wanted to spread Gracie’s memories all over PICU, resulting in giving the specialist play nurses ‘Gracie’s Box’ to give to children on PICU in time of need, for comfort or support. As well as this we have delivered sweets and chocolate selection boxes for Christmas to ward L51 and PICU. Alfie (Gracie’s big brother) helped by handing them out dressed up as Santa’s little elf and the children, and especially some of the parents were very impressed!

Once again from the bottom of our hearts, me and Jordan would like to thank everybody who has been there, who has supported us and who has helped to raise money for Gracie’s charity Children’s Heart Surgery Fund! We thoroughly appreciate it, and we cannot thank you all enough. CHSF are an amazing charity and without them, times would have been very very tough that’s for sure. 

All I will say now is that Gracie Mae and her story is a true inspiration to us all and remember, never give up 🩷🌈