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Willow's story

Willow stopped growing at 26 weeks

Willow at 32 weeks

We were made aware at 28 weeks that I had problems carrying Willow. I had high diastolic end flow pressure which meant Willow had reduced blood flow getting to her via my placenta. She had stopped growing at 26 weeks. We were told then that she would be delivered before 34 weeks as per the policy and I’d be having increased scans. However, I became acutely unwell at 29 +1 and ended up in ICU and then flown out to Portsmouth the following morning. In Guernsey I was given two lots of steroids injections, a stat magnesium bonus and continuous Magnesium infusion to protect Willow and strengthen her lungs and help neurologically. My blood pressure had risen to a life threatening high level so I was started on oral and IV medications to bring this down. The original plan, when I first collapsed, was to stabilise me and then deliver Willow here the following day. However due to our NICU being unable to accept under 32 week babies the safest thing was to fly us out. In Portsmouth we had a very Rocky time, each junior doctor, SHO, consultant etc all had different ideas and it seemed that none of them spoke to each other. I was being seen by a different doctor 3/4/5/6 times a day as my MEWS was scoring and therefore needed to be seen by a doctor. I showed all of the physical signs of having preeclampsia, however my blood and urine were always normal. So it meant we had to try and manage my blood pressure with more medications and deal with the spikes I was continuing to get. I had pains in my upper stomach, headaches, blurred vision and continuous spots in my eyes. My arms, chest and legs were covered in broken blood vessels. I had nose bleeds and then when my blood pressure spiked I would shake continuously and feel so unwell. My feet and legs swelled and became odematis and I was leaking fluid from my stomach down. On the plane journey from Guernsey I felt like a was loosing my waters and this continued until I delivered. When Willow was born she had little to no waters surrounding her. The midwifes were incredible in Portsmouth and really supportive. Due to the blood flow problems we saw the professor of Nuclear medicine who was also incredible. He wrote in my medical notes “DO NOT SEND THIS LADY HOME!” Over two large pages! He saw us on a Tuesday and told us that the blood flow had decreased and Willow had not grown and that things were getting serious. He had planned to re scan on the Friday however he had spoken to the midwife and told her he thought it would be too late by Friday. He then came in early on Thursday and scanned me, the flow had decreased further, Willow still hadn’t grown and I was getting decreased movement. I was sent for an emergency csection that day. Again I was given a bolus of Magnesium to help Willow neurologically and then a slower IV of magnesium until she was born. Anyone who has ever had to have Magnesium will tell you if feels like a volcano has erupted in your body and boiling magma is surging through your body - not a nice sensation. At least the second time I was prepared for how unwell I would feel, and the lovely midwife did tell me “you will feel like you are dying”!

Heading into theatre was frightening, I had my husband by my side and my mum and brother had flown over and they waited in the room for us. Willow was born at 16:48 weighting 1.3kg, she let out a tiny cry and was placed on the resuscitare. My husband was allowed over briefly to take a photo and then she was taken straight to NICU as she was struggling to breathe. I didn’t see her at all in theatre, I saw the resusitare with a blanket wheeled pass me, I only had the pictures my husband took. I still felt so unwell so i wanted my husband with me, we had asked that my mum went to NICU to,be with Willow so she wouldn’t be alone but they said this wasn’t allowed. I still feel guilty that Willow was by her self. I was finally wheeled down to meet Willow nearly 8 hours later. I remember seeing this tiny baby full of wires and tubes and my brain could not comprehend that this was my baby. The consultant explained that Willow had been on CPAP since coming onto the unit, however she was struggling and getting tired and therefore needed to be ventilated. She required further steroids and surfactant to help her breathing.

Willow had lines in her umbilical cord and when these fell out she had a long line inserted. She had TPN for increased nourishment and had fluids. She also Had caffeine to stop her having bradycardia episodes.

Willow was just incredible and showed herself to be a strong fierce little lady. Once she came off the ventilator she was the loudest and wigglest baby on the unit!

When Willow was a week old I was finally able to hold her and it was the most magical moment. She was tucked under my top and her tiny hands reached up onto my shoulder, I couldn’t keep my eyes off her and couldn’t stop kissing her, her first kiss x

We asked frequently when they thought we could be transferred back to Guernsey and most of the NICU doctors stated we wouldn’t be transferred until her due date. This is because of how uncertain/unstable some Babies are when they are transferred especially air transfer. However Christmas Eve we were told that morning that we were going home! We finally got to Guernsey around 6pm, settled Willow in the Guernsey NICu and then travelled home. This was one of the hardest things, actually leaving Willow in the hospital, in Portsmouth we had stayed in the parents room based on the unit so I was only 5 minutes away from her at all time. Now I was home and unable to drive, I felt really reliant on my husband and mum. I would cry on the car journey home and cry at home just wanting to be with Willow.

Willow unfortunately picked up an infection shortly after we returned to Guernsey, she was on IV Antibiotics and back on oxygen. Willow improved and became stronger and stronger. I then got asked to room in with Willow and this made me feel like a proper mum! When she got to 36 weeks they let me start trying to breastfeed and she did amazing. She tried easily but would be topped up with my breast milk and would reach her hourly goals. 3 days before being discharged her NG tube was removed and the day before we came home her oxygen came off too. The morning of our discharge she was taken off all of her monitoring cables and it was incredible to just hold Willow and be able to walk around with her.

I can still feel the pride I felt on the car journey home. The first few days were a lovely disorganised chaos, but we’re incredible. we had very close family come and have proper cuddles but we had to limit Other guests and had to be strict that no one with any illnesses came near us.

Since being discharged we have had a number of hospital admissions. During Covid, Willows Weight gain slowed down and then stopped, I was reporting to the health visitors that I could not feel Willow feeding from me, that she was trying to feed so frequently but for shorter and shorter periods of time. On our first hospital admission Willow had her NG tube reinserted and unfortunately because Willow has a poor suck and cannot coordinate her suck swallow the NG tube has had to remain. We work closely with SALT, the Dietician, our community nurses and our Paediatrician. It has been Really challenging. We had to take Willow back into hospital almost daily to have her tube replaced due to either vomiting or Willow pulling the tube out, this has been all hours of the day! Willow had her NG for 8 months, then, a bigger tube which stayed in so much better. She is developing beautifully, at 1 she was finally rolling and walking - which whilst it made feeding difficult it was also really exciting for us and her.

UPDATE...

Willow is now 2! She had her feeding tube out at 18 months. She has had lots of ups and downs but she is an incredible little girl who will achieve amazing things. Her determination will see her achieve anything she puts her mind to. We are so proud of her and we are always in total awe of everything she has gone through and what she continues to go through. The future is exciting and I can’t wait to see what she’ll become. But for now I’ll hold her close, when I can, and remember how wanted she was and how incredible she is.