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Thread by @NHS: "Ok. It’s time to go into Joshua’s memory box and tell his story Joshua was very much a rainbow baby and we were so excited and over […]" #thread #aboveandbeyond #fighter #theboywholived

, 69 tweets, 39 min read
Ok. It’s time to go into Joshua’s memory box and tell his story #thread
Joshua was very much a rainbow baby 🌈 and we were so excited and over the moon when I finally made it into the second trimester. (Alex and I are both big rugby fans!)
I was working as a 1st year Registrar in A&E when I suddenly broke my waters at 24 weeks. I was transferred to Southampton @UHSFT who have a specialist level 3 Neonatal Intensive Care Unit. They were wonderful, and did everything they could to stop my labour over Father’s Day.
The expert team at @UHSFT managed to stop my labour, a real miracle. I was put on bed rest and kept in hospital, but a couple of weeks I became septic from an infection in my waters, called Chorioamnionitis and needed an Emergency C-Section. Here’s my very worried looking hubby.
Alex was given a tour of NICU. The consultant neonatologist came down to talk us through having an extremely premature baby. With so much compassion and empathy she warned us to expect a rough ride, and to expect 3 steps forward, and 2 steps back. I’ve never forgotten her face.
Joshua was born at 27+1 weeks weighing 900g just under 2lbs. This is first picture we have of him in his plastic bag to keep the heat in! Alex was able to visit, but it took several hours before I was well enough to. The midwives were amazing and wheeled me down in my bed to NICU
Joshua did well initially. He was intubated and extubated (on and off the ventilator) for the first day but seemed to be behaving himself. The nurses on the maternity ward found me a side room without asking, so we didn’t have to be around Mums with their new healthy babies.
On day 2 things all went horribly wrong. We came down from maternity to NICU to alarms going off, and walked in to about 20 people crowded at one end of the nursery. Selfishly, I thought, please don’t let that be my baby. But it was. Joshua had had a massive pulmonary haemorrhage
We were ushered into a quiet room, a room I had been in many times as an ICU doctor. There’s one on every ICU. The room with the watercolours, the pot plant, and the box of tissues. But this time, I was sitting on the other sofa. We told Joshua was being resuscitated.
After an agonising half an hour, the Consultant came. I’ll never forget his face, or his words. He said he would explain medically, to help me understand what had happened. The words hit us thick and fast “massive transfusion” “inotropes” “100% oxygen” “nitric” “oscillation”
I knew what these words meant, it was bad bad news. They had resuscitated Joshua, but he confirmed what I already knew, things were looking really really bad. With boundless compassion he told us he didn’t know if Joshua would survive the afternoon. He had tears in his eyes.
He lead us to see Joshua. When I saw Joshua, tiny in the midst of all the lines, wires, machines and pumps around him, and saw the numbers all too familiar to me in ICU, I broke down. The Consultant gave Alex and I a hug, and told us if it was his child, he would be crying too.
The nurses managed to organise and emergency baptism for Joshua by @suepitkin. At such short notice we weren’t able to have any Godparents join us, so the nurses, as busy as they were, stood in as Godparents, and we had a ceremony in NICU. I’ll be forever grateful to them.
I was sick with fear that Joshua wouldn’t pull through. Not knowing what else to do I read him Harry Potter @jk_rowling, my favourite book and a source of comfort since childhood. I read the 1st chapter “The Boy Who Lived”. He seemed to respond to my voice and he rallied.
Against the odds, Joshua turned the corner. The team found a large PDA (hole in the heart) which is why he had a massive pulmonary haemorrhage. The team tried to close it with meds (amazingly, this is IV paracetamol and IV ibuprofen, who knew?) but warned he may need surgery.
As many premature babies do, Joshua became jaundiced and spent some time receiving phototherapy. We thought his shades looked pretty cool! Days in Joshua was still too unstable for me to hold him, but had already shown he was a real fighter.
Joshua continued to have haemorrhages and be a little monkey. We were told he was acting more like a 23 or 24 weeker, than a 27 weeker. After 2 weeks of fighting Joshua was still too unstable for me to hold him. The nurses knew how hard I found this and were endlessly supportive.
He looks quite chubby here but actually a lot of this is water weight from heart failure. Still, we looked forward to weigh in twice a week. The nurses and the neonatology team joined in celebrating every milestone with us, even when he went from 3ml to 6ml of breast milk feeds!
Finally, after 2 weeks and the best efforts of the nurses, I was allowed to hold my baby for the first time. The nurses were able to get Joshua out of the incubator that was his home, still ventilated and on a lot of support, and put him down my top for a skin to skin cuddle.
That weekend, the nurses arranged a birthday surprise for Alex. @nettybarnes1968 made Alex a card from Joshua’s footprints, and treated him to his first cuddle with Joshua. We hadn’t planned to spend Alex’s 30th birthday on NICU, but the nurses made it so special @GuildfordSC.
That weekend Joshua was extubated (the breathing tube taken out) and put onto CPAP (continuous positive airway pressure) which provided him with ventilation through his nose. We nicknamed it the snorkel mask but it meant we got to see a bit more of our beautiful baby’s face.
I continued to read Harry Potter @jk_rowling to Joshua every night. The nurses used to turn down the lights and listen. Joshua seemed to respond to my voice. By the end of the week, half the Mums of 8 were reading HP through the windows of their incubators to their babies!
By week 3 Joshua was opening his eyes. I was living at @UHSFT in a room provided by Ronald MacDonald. I was in NICU 0700-2300. The nurses loved Joshua and took amazing care of him, but I still hated leaving Joshua to go back to my room. It was like leaving a piece of me behind.
We were really grateful for the room that Ronald MacDonald provided. @UHSFT was miles away from home, a 90 minute journey on a good run. I was living apart from Alex @GuildfordSC. I couldn’t bear to be that far from Joshua and didn’t go home for weeks rmhc.org.uk
By week 4 Joshua was doing much better. The hole in his heart was closing, we thought we were going to avoid open heart surgery, and he was switched onto high flow nasal cannula oxygen. And we could see even more of his face. I covered him with lots of kisses while I could.
Sadly this didn’t long, and Joshua fell in a heap when the hole in the heart re-opened and he ended up back on the ventilator. I remember the Consultant sitting down and talking with me for so long about the options between trying to treat his PDA medically or surgically.
The skill and compassion with which the neonatologists looked after Joshua, and us as a family was just incredible. Every day the Consultants would include us on the ward round, and update us mostly twice a day. They involved us in every decision, including heart surgery.
The expert team through careful medical management managed to avoid Joshua going for open cardiac surgery. We saw some other babies having it though. The theatre team would come with all their equipment and drapes and turn the nursery into an operating theatre. It was incredible.
This isn’t a picture of @UHSFT NICU by the way, just an example I found on google. But you get the idea. What the surgeons could do in these tiny little babies, some of them barely weighing 500g was just incredible.
Joshua was given a knitted octopus 🐙 The tentacles are like the umbilical cord. Premature babies love to grasp these and it brings them some comfort. Here is Joshua’s, we called him Cecil. Thanks to @octopusfor and all the volunteers who knit these! Joshua loved his.
By week 5 Joshua was able to step down from Nursery 1 (the highest level of care) to Nursery 2 (out of 4). This was a huge step for him and a good sign. The nurses used to tell me that as you step down the nurseries you get closer to the entrance of NICU, and closer to going home
As he was getting better the nurses involved us more in Joshua’s care. They taught us how to feed Joshua my breast milk via the feeding tube, and change his nappies in the incubator (this is harder than it sounds!). We were having daily skin to skin and were so grateful.
Stupidly, I managed to cut my right thumb on some glass in NICU. One of the neonatal registers who used to be a hand physio picked up I had lacerated the tendon and nerve in my thumb. The next day, I was booked for an emergency operation. How amazing is @UHSFT?!
The morning of my operation, Joshua became septic. The Registrar picked up straight away he was not right and the team acted first. I was terrified to go under General Anaesthetic for 4 hours in case anything happened, but the nurses reassured me.
The anaesthetist was just incredible. He gave me TIVA, an IV anaesthetic, that would allow me to wake up more quickly and with less post-op symptoms so I could get back to Joshua. The surgeons changed the order and put me first on the list. I was overwhelmed with gratitude.
When I came round I was apparently asking repeatedly how Joshua was. The recovery nurses phoned NICU to get an update for me as I started to wake up. They then wheeled me across the road and back to NICU to continue my recovery there so I could get back to Joshua #aboveandbeyond
When I got back, the nurses had a surprise for me. Joshua had rallied enormously with IV antibiotics and fluids, and had been put on nasal high flow oxygen. And, as a surprise to cheer me up post-op, they had put him in clothes for the first time! NICU nurses are wonderful.
Joshua had several other complications but from here really went from strength to strength. He started to get a bit feisty which the neonatal nurses told me was a good sign, and started pulling out his tubes. He did this several times during our stay.
Six weeks in and Joshua weighed 3lbs. I had continued to read him Harry Potter @jk_rowling every night and we finally got onto the second book, the Chamber of Secrets. By this point most the parents in nursery 2 were reading Harry Potter out loud to their premature babies!
At six weeks old, Joshua had had something like 27 blood transfusions, and was starting to regenerate his own blood cells. Thank you so much to every who donates blood, you are really life savers. We are so grateful.
For World Breastfeeding Day the breastfeeding team had a little surprise for us. Did you know that Mums of premature babies have to express their breast milk 8 times a day? This is hugely exhausting and means being up in the night to express as well as being in NICU all day.
@UHSFT had a dedicated expressing room with efficient breast pumps, comfy chairs, and snacks and a jug of water to keep us fed and watered! The Mums used to affectionately call this room the cowshed, and we used to catch up with each other and how our babies were doing here.
For many of us, we really concentrated on expressing. Breast milk is so important for premature babies. I can’t describe how difficult it is to not be able to look after your own baby. For me at least, expressing felt like it was the one thing I could do for Joshua as his Mum.
Half way through week 6 Joshua was able to leave the incubator he had called home and move into an open cot. I hated the incubator, staring at my baby through the Perspex and having to reach into the little holes to touch my baby. The nurses made a huge deal of his transition :)
He struggled to maintain his own body heat as he was about 4lbs at this point, so the nurses wrapped him up well with hats and woolly mitts!
By this point Joshua was 33 weeks corrected. He was starting to show signs of being hungry & rooting. Breastfeeding was incredibly important to me and the nurses and breastfeeding team supported us establishing breastfeeding, even whilst he was still having help with ventilation!
After having been in NICU for 2 months it was amazing to have Joshua in his own cot. The nurses taught us how to safely pick him up with all the wires and tubes to cuddle him whenever we wanted. I needed lots of help as my arm was still in a cast after my thumb operation.
The nurses encouraged to pick out his bedding each day & decorate his cot. We also had buddy muslins. Joshua had one, and I had one. I would keep wear 1 for a couple days and then swap with Joshua’s, so he always had one that smelled like him, and I had one that smelled like him.
After a long stay at @UHSFT Joshua was finally ready to go back to @RoyalSurrey. We were really nervous to leave Southampton as Joshua had such incredible care. We had so much trust in the neonatal team and so much love for the nurses @NeonatalMatron @nettybarnes1968 @mistteegan
The retrieval team came to pick us up in a specialist neonatal ambulance. We were nervous, but the team reassured us. I was allowed to sit in the front. Joshua was put in a transport incubator, which we nicknamed the rocket ship, and off we were to @royalsurrey
By this time Joshua has doubled his birth weight, a huge milestone, and one we all celebrated with the nurses at @RoyalSurrey. The choice of outfits available is much better once you hit 4-5lbs and I loved picking out an outfit for Joshua every day!
The transition was really tough. We had gone from a tertiary level 3 NICU to a level 1 Special Care Baby Unit. As a result none of the babies were as prem as Joshua was, and were often only in for a night or two. We saw countless families come and go and it was heart wrenching.
However being a smaller unit the nurses at @RoyalSurrey were able to spend lots of time with me establishing breastfeeding. Joshua needed to put on lots of weight, and be off tube feeding, before he would be allowed home. This was a real challenge and the nurses were so patient.
It was a little bit odd, as a lot of the paediatric team were either friends or colleagues. But they were brilliantly patient with me asking LOTS of questions. I was also now living at home, now we were that much closer, and Alex could visit everyday. It made a huge difference.
Joshua continued to be a little pickle, and had a habit of just suddenly stopping breathing. At Southampton he had had to be resuscitated and ventilated several times for this, including once on my lap during cuddle time. He was on IV caffeine for this!
Several weeks later Joshua finally got rid of all the tubes and wires. This was such a huge day for us, although it was only temporary. I loved finally being able to see my baby’s face and kiss him all over!!
Joshua couldn’t manage to take in all the calories he need just with breastfeeding. He would get too tired during a feed and fall asleep! We had to top up with expressed breast milk via a bottle. I couldn’t get rid of the hated pump just yet! Daddy enjoyed being involved though!
Joshua was in and out of oxygen during this time. It was decided he would have to come home with oxygen. This involved lots of paperwork and organisation for the poor nurses! The oxygen was installed in our house which meant we had to have a visit from the Fire Brigade.
Eventually I was allowed to “room in” with Joshua. We were given a side room on SCBU where I could have him with me in his cot. This was so we could learn how to look after him and his oxygen, how to give his medications, and get used to looking after him on our own.
I was allowed to take Josh to Costa in the main entrance in the pram with oxygen and apnoea alarm to make sure he kept breathing. Lots of my friends & colleagues at @royalsurrey came for a cuddle! It makes me smile as I get a coffee from here every morning before handover now!
The last couple of weeks were actually some of the hardest. We got the nursery ready to go home but several times Joshua would have a dip, or there would be some reason we would have to stay in hospital. Each time I was absolutely devastated, and upset to go home without Joshua.
One of the last hurdles was Joshua’s hearing test. This picture always makes me laugh as I think he looks like a little DJ. He also had to pass a car seat challenge, making sure his oxygen levels would be ok in the car seat for our 30 minute journey home.
3 months later and just before his due date finally, finally, it was our turn to take our baby home. There were lots of tears and hugging with all the wonderful nurses. We practically ran out of the hospital with Joshua before they could change their mind about discharging him!
Here’s us leaving the @RoyalSurrey after 3 months @GuildfordSC
Everyone was over the moon. Except the Katniss the cat. She really wasn’t happy about not being the favourite.
Both the Katniss the cat and Paddington the Corgi soon warmed to our newest family member, and we survived our first, amazing but very tiring night as a family.
The story doesn’t end there, prem babies still have mountains to climb after they go home, but right now, with perfect timing, Joshua has woken from his nap. I’m going to go and have a really long cuddle with our little fighter. Thanks for listening to Joshua’s story.
For those asking for a picture of Joshua now here he is a year on with the picture we were given that lives above his bed. Most people never get to meet their heroes, I gave birth to mine! Thanks for listening to his story we’re off for a cuddle😊 #fighter #theboywholived
And that’s it from me! I won’t be able to read any messages to the @NHS account but you can follow me at @sbattrawden, The Doctors’ Association UK @TheDA_UK or 10 Things to Know @10thingstoknow_. Thank you for having us and hearing Joshua’s story @NHS! 👋🏻#overandout
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