Missing our baby boy so much already!!!

Rae was born at 32+3 weeks due to his us showing problems with the placenta size and the flow to him and so they decided emergency c-section within 2 days was needed to try and prevent complications, so on the 15 October ‘25 at 16:53 little Rae was born weighing a healthy 4lb 3oz (1995g) he managed a very quick cuddle with mum as he couldn’t hold his oxygen very well and they had to rush him down to NICU to get him stabilised as quickly as possible. Myself (Nana) and mum thought it was just your normal early baby just needing a helping hand when being born early but that wasn’t the case for baby Rae, as mum was still bed bound and recovering in her room I went down to NICU to get pictures and and update to be able to take back to mum and that’s when our world was turned around, the consultant asked me to take her to mum so she could explain everything to both of us at the same time.
Turned out Rae had a rare 1 in 3500 congenital condition called OA/TOF!!!

“Oesophageal Atresia (OA) and Tracheo-Oesophageal Fistula (TOF) are rare congenital conditions where a baby's food pipe (oesophagus) is not properly formed (OA) and/or is connected to the windpipe (TOF).”

https://tofs.org.uk/what-is-oa-tof/?srsltid=AfmBOooQTpaI_s3ZdkxVNneNWmS9oUFbtEifX8a0kLpyd8N-VL6FR4B2

They then proceeded to tell us that Rae needed to be transferred to a specialist hospital that deals with these types of cases as he needed an operation to fix the fistula and hopefully repair the OA and they needed to do this fast as he had already had to to be ventilated due to struggling to breathe and that we nearly had lost him already, fast forward a few hours and PANDR arrived to transport him, he had to go all alone as mum was still bed bound and couldn’t go with him, we were worrying the whole night as all we could do was wait for the next steps.

 6:30am phone call came through from a surgeon we’d never met and had no knowledge about telling us that she needed our consent to proceed with his life saving extremely dangerous but important operation, which of course mum agreed to but we were still stuck over 45 miles away from him while he was going for what we thought was going to be his biggest ever operation (how wrong were we) they said he would be going down by 7am and that we would be contacted as soon as he was recovery to let us know how it went. We were a mess all we wanted to do was see, touch, hear our little boy and give him a kiss and tell him to be strong and that we’d be right there waiting for him but we couldn’t we had to sit miles away hoping beyond hope that everything was going smoothly for Rae when he was just 13hours old premature.At last some good news we were being transferred to the same hospital as Rae but mum was still bed bound due to severe dehydration and random heart rate drops but luckily she could transfer from one bed to another after a few attempts and major determination to be with her little boy, we arrived in the afternoon and the nurses finally managed to get mum out of bed and walking small distances BUT found out she had an infection already so the antibiotics started.


 Around 17:00 we had a phone call from his surgeon saying the operation was very touch and go for a while as he didn’t tolerate the general anaesthetic but they successfully fixed his fistula so he could now breath with his ventilator properly and his stomach wasn’t filling up with air. So I took mum so meet her baby properly for the first time 24hours after he was born she was so happy and overwhelmed as he was attached to so many machines, tubes and wires but he was with us that was the main thing.From there recovery became slow and steady but he had more hurdles to overcome as yet as he had a replogle (or snot sucker as his round uncle would call it lol) to make sure his secretions didn’t go into his lungs and the nurses needed to flush this every 10-15 minutes to loosen them down and make sure the tube didn’t block (which it did more frequently than they would have liked). Then in November they deemed him well enough to have his gastrostomy (feeding peg directly into his stomach) done as he hadn’t been able to have any feeds as his oesophagus still wasn’t connected to his stomach. So operation number 2 was underway, he was still only a few weeks old at this time and had already had multiple infections from his operation to chest infections and had only just finished a course that day. This operation wasn’t as long but still a scary 4hours of waiting it’s felt like a lifetime but once again he came out with a few complications from anaesthetic but they were ready for them this time.

 A few days later he was able to have his first bit of milk into his tummy and he was enjoying it even if it was only 3mls once an hour bless him. Fast forward after more infections, bradycardia/desaturations, ventilations, CPAP, high flow, even isolation due to picnorvirus, rhinovirus, CPE skin bacteria and as if that wasn’t enough a chest infection all at the same time which lasted around 3 weeks from Christmas Day right into the new year, we eventually made it to PICU and his 3rd operation THE BIG ONE his OA repair he had 2 of the countries most talented surgeons 1 even traveled a few hours just to help out as Rae was a very complex little boy but with all the best team that the could get for his operation it was finally underway, 9 hours later it was all repaired but was a very long stretch with a hidden pouch (where his oesophagus should have been connected to when he was born), they also found out that he has sever tracheamalcia (the trachea was collapsing in on itself) which they the believe was the cause of his bradycardia/desaturations.

 

Rae was on the ventilator, a heavy sedation and a muscles relaxer to stop him moving around for 2 weeks after his operation to make sure he had enough time to fully heal before he started moving his head around and getting upto his normal mischievous things or pulling any wires or tubes he had attached to him out/off, after his ventilator was removed he needed a bit of CPAP just to recharge himself and remember what he needed to do and just 12 hours later he was self ventilating with no replogle sticking out of his mouth for the first time since birth, he made a speedy recovery from there a few more days with a chest drain and TAT tube just till he could have a contrast xray to make sure there were no leaks after the repair which luckily there wasn’t but he did have a very slow working oesophagus into digestion. After all that was completed it was time to move onto his tracheamalcia tests which needed to be sent to a different hospital but to the surgeon that joined the op for his repair, while awaiting results he decided to contract a viral which meant he was requiring small amounts of oxygen and suction from time to time then the results were back from the other hospital

and they deemed it bad enough to warrant more in-depth tests so Rae got to travel to yet another hospital this time 65miles away from home which meant myself and my daughter couldn’t travel to and from the hospital (like we’d had to for a majority of his NICU stay of 113days) but luckily they provided accommodation for myself while my daughter was cot side at night time and on the 10th March he had his extra tests, a dilation as he had an early stricture (repair site closing slightly so needs stretching to stop is completely closing up) and the scary part a fistula pouch growing from his first ever operation (another rare case) so that evening they came to us and told us he would need a 4th operation on the 23rd March, time seemed to drag for those 13 days but we made the best of a bad situation and went on little exertions around the area which Rae seemed to enjoy cos if he wasn’t asleep from the walking he was smiling away or looking at the scenery and people go by. When operation day finally came around he was his super chill self even tho he had an empty tummy as they stopped his food at 2am and knew something was going on yet again he didn’t even cry just the odd whingy babble and then he was happy again we were able to carry him down in his lovely hospital gown 10x to big for him and wait for him to breath his sleepy gas in before we left him in the good hands of the anaesthetists or surgeons then on to our second longest surgery wait, we didn’t know what to do with ourselves as unlike his 3rd operation we had no one close by to come spend time with us as it was to far away so we just had to make do until we received the phone call to say he was on his way back which thankfully came through around 8hours after we left him, he’d decided to struggle with the wake up part of recovery as someone liked his sleep lol then we were off to PICU yet again atleast this time he was only ventilated for a few days, CPAP for a few hours, optiflow for a few more then back to self ventilating by day 4 and we were back off to ward again with chest drain in tow for another few days as he had a small bubble of fluid or air that was being very slow to dissipate. We were then given the all clear to return to the other hospital for our BLS training and finalise his oral feeding plan with SALT and dietitians that took 9 days for a bed to become available but we made it and to save time we had BLS training before transferring.

On the home run !!
We got back on a Tuesday and then came the clearance that everyone agreed he was doing well and should be ok to go home every person agreed, others wanted regular hospital visits which was ok with us money with the daily hour+ drive each way daily. On that following Monday around midday they had all agreed Rae could go home we were excited and scared as now we would take over all aspects of his care even though we were fully trained it was a scary thought after 25+5 weeks inside the hospital we were now responsible for all his pump feeds, gastrostomy feeds via pump, medication every 6hrs aswell and PEP mask twice a day (resistance mask to strengthen his trachea) but we knew we could do it as mum was doing brilliantly with her super chill boy, he loved his sleep, he rarely got majorly upset until it was clothes change time, nappy change, tummy time or his teething was hurting so the normal culprit's lol. All to soon we had our first A&E venture his gastro had come out while putting him down for a nappy change after cleaning the stuff that came out of his tummy and trying to replace it to no avail we were hospital bound to which our local was also unsuccessful by this time Rae hadn’t had any food since 7am as it came out a few mls into his 10am feed but no one would have been able to tell he was hungry as he was happily eating his hands, babbling away and flirting with the nurses his typical cheeky self, it was now mid afternoon and his blood sugars were slowly dropping so they had to act fast so we were blue lighted to his now main hospital, hours later still no luck getting his gastro back in so they changed him to a smaller Foley catheter with adapter so he could still get his milk but he couldn’t have that until he got to ward as they didn’t have his infitrini pepsol (calorific baby milk) and ward would take him until his sugars were above 4 and stable they were currently 2.7 and dropping even with glucogel as he could only have small amounts due to still learning how to swallow properly. In the end we decided to give him a small feed with just one half of his normal milk until we got to ward just to stabilise his sugars, so at 9:30pm 14 1/2 hours after his last proper feed he eventually got some fluids in him and his sugars came back up and stabilised but we had to spend the night to see if they wanted to take him to surgery on the Sunday or bring him back later in the week. We were released on the Sunday with the CNS nurses calling us on the Monday with the next steps.

All was still going steady Rae had visited a few family and friends but we were doing it all slowly so we didn’t overwhelm him or make him ill and he was thriving, Monday afternoon the CNS called and we were going for an appointment on the Wednesday 22/4/26 just 2 days later and he had a health visitor appointment the next day on the Tuesday he weighed in at a healthy 12lb 13oz (2 weeks prior he was 11lb 9oz) which was great considering how much he lost after his big operations due to being on TPN.

Wednesday came around and we done the hour drive Rae was happy sleeping for that part then went in his buggy to have a wonder till his appointment and say hello to the lovely people we’d met up there along the way, it was then time for his appointment and someone decided it was a great time for a dirty nappy ‍♀️ there were some abnormalities that I made the CNS nurse aware of and that we believed he had yet another stricture as he was struggling with his form again and his reflux didn’t contain much milk (his normal tells) and were told was all ok as he’d be back on 1st may for an MLB but what they were wrong!!!!!!

That night Rae was grumpier than normal but would settle with a cuddle and some pain relief so we thought it was just them putting his gastro/PEG/mic-key button (they have different names in different places) back in and his teething as it was on and off crying but would settle for a good hour or so before the next bout etc no temps nothing out of the ordinary, around 1-2 am mum was so tired with the broken sleep that she asked if I could take over (I was still helping with nights while they got settled) so he moved to the living room in his swing as he wasn’t allowed to lay flat like a normal baby would. Once he was changed into his swing he woke up a few times but was easier to settle and would drift back off easily I woke up around 5:30am and checked on my baby boy and he was doing his normal husky, squeaky stuttery breathing he got when he had some reflux but it only last a minute or two, I also noticed he was colder than normal so I added an extra blanket and put the heating up a little bit more and within 5 minutes he was nice and warm again so about 6am I woke mum up so she could stay with him and do his morning meds and I went outside for a cigarette,

 little did I know that 5 minutes later our worlds would be turned upside down inside out and then go through a crushing machine!! I came back in and put my coat onto the chair knocking something off the chair and spilling things on the floor so me and mum sorted that out and heard a weird noise come from Rae (who was well away from the chair) it was a gurgle sound we turn quickly and check on him and he has loads of snot so clean him up thinking it was just extra secretions finding a way out and brushed his cheek to make sure he was ok as he wasn’t still asleep (all normal for him) and he gave a small cry and pulled away from me managed to take a breath myself at that but then little did we know we were watching his last breaths for himself as he then done another gurgle and no more so my BLS training kicked in I got him out of his swing he wasn’t supporting himself in anyway, laid him on his changing mat on the floor and started CPR while my daughter called the ambulance , I was there giving CPR to my 27 week old grandson for the longest 11 minutes of my life until the ambulance took over then they worked on him to get him ready for transfer to the hospital and there were that many paramedics in the ambulance that we travelled in the police car behind time didn’t make sense after that my husband was on route to the hospital not far behind us and turned up while we waited outside the back of A&E having a cigarette to calm our nerves not that it worked then we went to the room opposite where they were working on Rae and the consultant came over and said they were going to stop resuscitation as he hadn’t had any output for around 90 minutes and that’s when our hearts broke our souls shattered and I don’t think any of us had cried as much as we had in our whole lives than we did that day when our baby boy grew his wings and our whole lives changed forever in a matter of minutes.
a week later and we still don’t know the cause of his passing and we might not for months but his currently off at a different hospital having further investigations into this and will hopefully be released back in the next week or 2.

While in the mean time we would like to organise the best send off we possibly can for the little boy who could light up the entire room with his smile, melt hearts with his eyes and make everyone want to cry when he cried, he was so loved not only by family and friends but by the hospital families we gained along the way and everyone has been absolutely amazing with the support they have provided for us while we go through the most devastating time of our lives. We ask for anything you could possibly spare no matter how small it will all be so gratefully appreciated to celebrate the life of an amazing little boy whom we all loved so dearly.