Preeclampsia – Dexters Story

Dexter James Knight, born at 28 weeks and 3 days on the 28th March 2018 (due date was 17 June 2018).

Dexter is the first in my Awareness Project.
I want to bring awareness to the many battles that babies and children go through. Dexters Mum, Emma was kind enough to share their preeclampsia story.

Dexters preeeclampsia journey began on the 27th March 2018. This was the day of a normal growth scan, it wasn’t a routine scan, but a precautionary one as my 20 week scan showed that my uterine artery levels were a little high. An extra scan is advised to check the baby’s development as this can affect the growth towards the end of pregnancy. Little did I know that I wouldn’t be heading back home and off to work later that Tuesday afternoon. During the scan the sonographer spotted that my placenta wasn’t quite working properly and that his growth (although perfectly fine at that stage) was starting to slow. She then asked me if I had been suffering from any symptoms, I was; I had been suffering with swelling, upper back pain, headaches, and slight visual disturbances, all of which I thought were normal symptoms of pregnancy!

Little did I know that I had developed severe preeclampsia, so severe that HELLP syndrome also snuck into the equation. They booked me in for an emergency appointment with the professor of the foetal medicine department. I had to do a urine test, had my blood pressure taken, and was stabbed numerous times for bloods to be taken. All results came back with pretty bad results and my day then became very scary when he said “we will need to deliver your baby tomorrow”, my heart sank and I was terrified of the outcome because it was so early in my pregnancy.

By 5pm that day I had been admitted to the Delivery Suite where I was hooked up to a blood pressure machine which went off every 15 minutes, it was so high they were concerned I would suffer a seizure. I can’t even tell you many needles I was stabbed with because of the preeclampsia, I had to have steroid injections to help prepare his lungs for early delivery, a drip to help lower my BP and also help with his lungs, and so many blood tests to check my platelet levels, which were very low due to the HELLP.

There was no time for induction and I was scheduled in for an emergency C-Section the next morning. The nature of my section depended on my platelet levels, if they did raise to a satisfactory level I would I have had to put to sleep for the surgery. Luckily they rose to just about borderline, which meant I was able to remain awake and my partner could be with me.

At 10.32am on Wednesday 28th March, Dexter was born weighing a tiny 2lb 5oz. He was brought over to me for a quick kiss before he was whisked away to NICU. It was a long and painful 8 hours before I was able to go and see him. It was such a bitter sweet feeling when I saw him all wired up in his incubator. It felt amazing to see him and know that was ok, but heart wrenching at the same time, knowing that he was fighting so hard and the uncertainty of what might happen next.

He was very tiny but at this stage everything was looking promising, a valve in his heart was open as it didn’t have time to close naturally before birth, but this was fairly normal and he was put on the ‘Baby Oscar Trial’ and given medication to assist its healing to prevent the need for surgery. During his first night he suffered a pneumothorax, so the next morning when we saw him he had even more tubes, 1 either side to drain the fluid from his lungs, and also a ventilator to assist with his breathing. By this point we had learnt to cope with what was happening, and we knew he was ok and the tubes were all there to help him in one way or another.

From this stage onward he continued fighting and each day was an improvement on the last. By day 6 he no longer needed the ventilator and was put onto a nasal cannula for his oxygen supply (he was on Vapotherm supply), and by day 7 his drainage tubes had both been removed. It felt amazing seeing him that evening with less wires covering his tiny body.
During his first week or so he lost a little weight, but he gradually started gaining again shortly after.

Day 13 was when were able to hold him for the first time
I can’t express how amazing it felt to finally be able to do something most mothers do within seconds of giving birth. But as good as it felt it was also slightly scary, he was still so small and delicate. From that day on we had skin-to-skin at every visit, I am a strong believer that help his progression a lot, and was such a good way for us to bond with him. On day 22 we arrived and saw a whole new sight, he was finally wearing a baby grow, it utterly drowned him but he finally looked like a ‘normal’ baby.

At 3 weeks old he graduated from intensive care and was transferred into High Dependancy. We were one step closer to home but still had a long journey ahead of us. On 23 April his vapotherm flow was reduced, but he wasn’t quite ready and his sats were a little scatty, so it had to be increased again. It then had to be increased again on the 26th as overnight he started to struggle a little with his breathing. They carried out a chest x-ray to make sure there wasn’t anything else going on. Thankfully there wasn’t anything terrible occurring, but he did have a build up of fluid so he was put on diuretic medication to help him flush some of it out. Because of this medication he then required sodium and iron supplements.

On 5th May we arrived to see several nurses surrounding his incubator, this was a scary sight as we were so used to seeing daily improvements. His bloods were a little low so he required a blood transfusion, once we knew what was happening and were told how normal it was for pre-term babies to require this, we felt much better about it, but it still doesn’t make it any nicer to see, especially because we were unable to cuddle him and comfort him. But by the nest you would never had known he’d been through that (besides the massive cannula in his teeny hand).

Over the remainder of his stay in High Dependancy his incubator temperature and Vapotherm flow were slowly being reduced (vapotherm was much more gradual), and the improvements came in thick and fast and by the 12 May, after 3 attempts he was finally off vapotherm and put onto a regular flow of oxygen. And this time he remained off it! This meant I was finally able to try breast feeding him for the first time, it took a few weeks before we fully cracked it as he found it very tiring and a big learning curve for the both of us.

By the 18 May he had finally made it 4lb and starting to get some proper baby chub! Then on the 21st May we reached another huge milestone, he was able to come out of his incubator and put into a cot, which meant the next day he was moved in Special care, the final stage before home time.

Special care was a much more relaxed room, not so much beeping and generally less scary than the other 2 rooms. On his 8 week birthday came the dreaded immunisations, my poor little baby had been poked and prodded by so many needles already, he did not enjoy his injections one bit. By this stage, knowing we were so close to bringing him home, I was spending my full day with him in order to get him feeding.

By the 25th May he was on just 0.08L of oxygen, which is amazing considering it took several attempts to wean off the Vapotherm supply. He was put on a sats study for 24 hours to see how well he was coping, the results were amazing so they weaned him down to 0.05L. He remained on this for several days until the nurses felt comfortable in reducing it to just 0.01L, hardly anything at all! We were well and truly on the home run, but there was still something to contend with first.

During a nappy change overnight on the 25 May, his nurse noticed his testicles looked quite swollen, she believed this was a hydrocele which would have resolved on its own. Unfortunately upon further inspection the Drs diagnosed him with an Inguinal Hernia which would require surgery to repair. This was not a major set back, we were still able to continue as we were with hope of coming home very soon.

The best day of his journey so far was the 30th May. His oxygen flow was stopped completely. This was the most incredible news as just a couple of weeks before we were told there would be a possibility of him needing oxygen at home. Because his flow had stopped and they were pleased with his breathing his nasal tube was finally removed. His MG feeding tube was also removed as he was feeding well from both breast and bottle. This meant we were finally able to see out baby boy’s whole face with no tubes at all for the very first time.

From then on it was a waiting game, his operation for his Hernia would be at Kings College in London, so we had to wait for a bed, the staff and available transfer before he was able to go there. Everything was a little up in the air as nobody really knew how long it would take, so we carried on as normal. On the 1st June we were able to room in, which meant we spent a night in a room at the hospital with him. This felt amazing, we were finally a family. We spent the whole weekend with him until the early hours of the morning on Tuesday 5th May when he finally got transferred to Kings for his hernia operation.

We arrived at Kings at about 7.30am that morning, he was back in an incubator whilst being prepped for his surgery. Tt was so strange seeing him back in one, he looked so big in there compared to what he had done! The nurses explained everything to me, it was all pretty routine but I was warned he may need to be ventilated again because he had only recently come off of oxygen. By lunch time he was back from surgery and I was able to see him and even give him a big cuddle. I can’t even explain the relief I felt when I saw he didn’t need the ventilator, just a few standard wires for his sats and his MG feeding tube, not to mention the dreaded cannula.

It was extra hard to leave him behind that evening, but I was lucky enough to have a room at the Ronald McDonald house just round the corner, so I knew I was close to him and able to go back first thing the next morning. The next day he had been moved to Special Care where was doing amazingly well and a few hours into my visit his wires and tubes had all been removed again. They were so pleased with how well and quickly he had recovered from his surgery that all we had to do was wait for the transport team to take us back to The Oliver fisher unit in Medway.

They arrived at 4pm and by 6pm on the 5th we were back at Medway. On arrival, Dexter had to be put back into an incubator AGAIN (because of being transported from another hospital), and he was back in intensive care. Solely because it was the only room that a space for him, and believe it or not it was the exact same spot he had before! Because of his surgery the Drs wanted to monitor him for 48 hours, so were given a home date of Friday 8th June, not long to go! He was totally back him self that evening and I stayed with him until midnight so I could feed him and make sure he was settled before I left.

The next morning I was on my way to visit him when the hospital called to tell me the Drs had done the rounds and were so pleased with his recovery that they were happy for him to go home that day, I have never been so happy in my life. I continued to my visit as I wanted to wait for his Dad to finish work before we brought him home, so I stayed for several hours with him before coming home to get his car seat and bag ready to bring him home that evening.

Before we knew it we had a 10 week old, 4lb 13oz baby at home. 

The first few days were tough, he was very unsettled due to the change of environment. But once he settled, he was back to the cheeky little baby we knew.

Since being home he has gone from strength to strength and continued to gain weight and rapidly outgrow his clothes! He now weighs 7lb 15oz and is continuing to make us proud on a daily basis. The next stages of his journey are scans on his kidneys (to check a build up of calcium caused by the diuretic medication) and a hip ultrasound due to him being breech to make sure he doesn’t have hip dysplasia. If he does he will require a brace to wear for while. Other than those its just routine appointments with the paediatrician and general baby health checks.

So, here we are today. Our happy Family. Altogether, as it should be.

It has been an honour to meet little Dexter and his wonderful parents. They really are full of love and admiration for their miracle son.