Jess did so well during her first two weeks. She started off as a whopping 5lbs 5oz baby, which sounds tiny but for a 33 weeker, it was good. She spent only 11 days in the NICU and fed and gained weight well. The only thing she couldn't keep on top of was her jaundice. Myself and my husband, Matthew, had a new arch enemy - called Billy-Rueben (elevated Bilirubin levels indicate jaundice).
While we were in NICU, Jessica's levels went over treatment levels and she was treated using UV light. This was always gutting as it was a step backward in terms of bringing her home. She was just under treatment level when we were discharged and we were so happy to be going home, we practically forgot all about it.
A few days passed and Jess had her normal checkups. She was frequently changing colour and looking yellow for a few hours and then back to normal. It was at one of these checkups that they decided she needed another blood test to check how her levels were doing. We didn't think much of it and carried on with our day.
I had a phone call later that day and, unfortunately, we would need to come in and be seen. It was then explained that we would not be able to come back in to Southmead NICU as we had been discharged and Jessica was over 8 days old. We were advised that we should go to the A&E department at the BRI. They would send over the relevant information and Jessica would be given immediate treatment.
Unfortunately, they had recieved no records for Jessica on arrival, and so we had to wait to be seen and her treatment was not started. Despite all this, both Jessica and my son, Finley (21 months at the time), were amazing. My husband had to take our son home, despite being anxious to know what was going on with Jessica, which must have been challenging for him.
Eventually, a consultant came to see Jessica and advised that she needed to start the treatment ASAP and not wait for all the information to come through. He explained that both premature and breastfed babies had higher risk of developing jaundice and it was completely normal for up to three weeks. Since Jessica was nearly three weeks, he suggested taking some extra blood tests so that they could do further investigations more quickly if she was still struggling past three weeks.
It was a few hours until we were moved onto the ward. It was different at the ward at the BRI, compared to Southmead NICU, in that I was solely looking after Jessica. She was under the lights and so this meant that I could not leave the room at all for the entire time I was there. As mentioned in my previous blogs, I was also struggling with lockjaw due to a impacted wisdom tooth. I was completely unable to open my mouth and therefore unable to eat anything, so I had been prescribed fortisip. At the BRI, they provide free meals to all breastfeeding mothers (which is brilliant), however, being unable to eat anything solid, I ran into a problem when I ran out of my fortisip drinks. For about two days, I was only able to consume yoghurt, protein shakes and coffee. Not a brilliant diet for a breastfeeding mother.
The second night that I was in the BRI, Jessica was very agitated. As pictured above, the bed was not within reach of her cot. I had to hold her hand and stroke her head to get her to sleep as I could not pick her up to cuddle her. This was due to her being under lights. I was actually very lucky at the BRI, as in the NICU, babies under lights were still in incubators and so it is even more difficult to touch, feed and change them.
The third night that she was under lights, I noticed her looking significantly more healthy and the whites of her eyes were no longer yellow. I also was given a pop up bed in the room to allow me to be closer to her and soothe her without having to get up and walk over every few minutes. However, due to a condition I have which makes me extra sensitive to specific UV rays (PMLE), I developed a rash where my skin was exposed to the light.
Matthew and Finley came to visit us every day. It was more of a struggle with Finley as he didn't have much to do in the room and as I explained before, we couldn't leave the room with Jessica under the lights. It was the only time that me and Matthew could spend time together as well, as he took Finley home in the evenings and for naps, so we didn't want to split up.
Over the course of two days, the doctors and nurses contemplated whether to discharge us. When we were finally discharged, I was so relieved and nervous at the same time. I had felt that I had got my hopes us about keeping Jessica at home the first time and then this had happened. What if it happened again?
I'm happy to say this was the last of our hospital visits with Jessica and she is now almost one year old and is happy and healthy!
Hello everyone – Clare’s husband here. Clare has asked me if I could write a little blog post for her about her our daughter, Jessica’s, time in NICU, so here it is!
After a long, exhausting labour, Jessica was born at 33+6 weeks at Southmead hospital. Her early arrival was completely unexpected, and I felt completely unprepared. During labour, Clare and I were very worried about whether or not Jessica was going to make it. I knew nothing about what it meant to give birth so early, so I had no idea about what complications could arise. After 30 hours of labour, Jessica finally arrived. There were no immediate signs of any health concerns, so she and Clare had a quick cuddle before she was transferred to an open cot and her health was checked by paediatricians. Thankfully, she was in good health, but because she arrived so early, she was taken to the NICU into one of the special care rooms. I walked there with Jessica, beside her in her cot, but Clare was left in the room she gave birth in with her mum, and she felt sad that she couldn’t be with Jessica.
I was overwhelmed with emotion, but I just remember being so happy that I had finally met her. After saying goodbye to Jessica, I went home to drop my mother-in-law at home with our son and to pick some things up for my and Clare’s stay at hospital. While I was away, Jessica was moved from the special care room to one of the high dependency rooms. Unfortunately, the midwife who was organising Clare’s arrival to NICU was not informed about Jessica’s room change. So, as you can imagine, when Clare arrived at NICU with the midwife not knowing where our daughter was, there was a bit of a panic! Thankfully, Clare was swiftly reunited with Jessica, and, with my return, our NICU journey had officially begun.
Jessica’s stay in NICU was very difficult for us. For three days, we were allowed to stay in one of the hospital wards just a stone’s throw away from NICU. Clare had a hospital bed and I slept next to her in an arm chair. Although it was not the comfiest of places to sleep, I was so exhausted from the previous night’s sleep (or lack thereof) that I had no trouble getting to sleep. Many times throughout the night I would wake up, pop on my shoes and just walk down to the NICU by myself to just look at Jessica through the incubator glass, or (if I was lucky enough) give her a cuddle on my chest as I sat in a reclining armchair. I felt so happy whenever I was with her. She was so small and so delicate.
Being at NICU made it difficult for us to spend quality time with our son Finley, who was almost two years old at the time. We had to balance our time so that we were able to care for both our children. Luckily, the NICU at Southmead Hospital had a couple of family rooms filled with books and toys for Finley to read and play with whilst Jessica was in her incubator next to him. Going back and forth between NICU and home multiple times a day was quite exhausting for me. Just the fact that Jessica was in NICU in the first place was emotionally overwhelming. I felt so emotional one evening whilst driving back to NICU. I was listening to a song called “Waitin’ for a Superman” by The Flaming Lips as I was driving to NICU on my car stereo, and it just made me think about how incredibly challenging it was to be a NICU parent. I thought about how everyone was counting on me to be strong and resilient, but it was just too full on for me to manage. When the chorus arrived, I just started to cry while I was driving.
After three nights, our night time stays at Southmead Hospital had come to an end. The NICU ward had some spare rooms for parents who lived far from the hospital or for families who’s baby were almost ready to be discharged. We didn’t fit into either of those categories, but I strongly felt that it was important for Clare and Jessica to stay close to each other. With Clare knowing that she wasn’t going to be saying on the ward anymore, she had stubbornly decided that she was going to just sleep on the armchair next to Jessica’s cot, in the same room as all the other newborn NICU babies. I admire her willingness to be there for Jessica – it was important for Clare to be nearby if she and Jessica were going to develop a good breastfeeding regime. I didn’t, however, think that it was a good idea for Clare to sleep on an armchair for the next however many days, so I decided that something must be done. I was able to persuade one of the head midwives to allow Clare to stay in one of the spare rooms, under the condition that if someone else needed a room, she would have to be evicted on short notice. That was incredible news for us, as it meant that Clare could be closer to Jessica, and, in a few days time, it would happen that Jessica was allowed to sleep in the same room as Clare.
Unfortunately, there soon did come a day when someone needed the spare room more than Clare. Clare had to leave, and she decided that it would be best if she did come home instead of sleeping in the armchair. She was still very determined to breastfeed Jessica as much as she could, so she timed her NICU departure and re-arrival at such times so that she would only miss two feeds. Although she had been able to come back home every evening since she was discharged to have a bath with Finley, she was able to spend some extra time with him, and she was even able to have a short, but comfy sleep in her own bed. Luckily, she was given a room again when she returned!
Although I was allowed to stay with Clare and Jess, we decided that it would be best if I returned home to stay with Finley. I was sad to be leaving Clare and Jessica at hospital, but I was also happy to be able to spend some nights at home with Finley as well. I felt a bit inadequate, in the sense that I wasn’t there to give Jessica cuddles, or change her nappy, or comfort her if she was crying. I trusted Clare and the NICU midwives to be there for Jess, but I still wanted to be doing more for her.
During Jessica’s stay at NICU, there was a constant battle between whether or not she required treatment for jaundice. She was quite yellow, and during the first few days of her life, her bilirubin levels were quite high. She needed to be put under ultraviolet lights to treat her Jaundice, for which she needed to wear special eye covers to protect her eyes. After a few days, her bilirubin levels lowered, and the UV lights weren’t needed. Unfortunately, her bilirubin levels kept increasing to just over the threshold for her requiring UV light treatment and she kept on being put under lights.
It was great when I arrived at NICU and saw that Jessica’s general health had improved. After saying goodbye to her in the evenings with the UV lights above her, seeing her in the morning with the lights removed and in an open cot would put a smile on my face. Another big thing was when her nasal cannula and feeding tube (which entered through her nose) were removed, and we could see her face a bit more clearly. As Jessica’s health improved, she was moved to different rooms which required less intensive care. Some mornings I would walk in and not realise that she had changed rooms, so it was a nice surprise to see when her room had changed!
On her last day, Jessica had shown to be feeding well, and her bilirubin levels had settled to an amount that didn’t require treatment. This meant that the midwives and doctors could discharge her from NICU and we could take her home! Clare and I were very excited and so relieved to be finally taking her home where it would feel a bit more like we were a family. We are so incredibly grateful for the care and medical expertise that the midwives and doctors provided for Jessica during her stay. We are also thankful for Clare’s mum, who flew to Bristol from France to support us all and take care of Finley while Clare and I were at hospital. Our friend Maddie was also kind enough to make us some delicious meals which really helped, and also Helen was very helpful when she looked after our son Finley, so a big thank you to them, as well as everyone else who helped out!
If I were to give some advice to other dads with babies in NICU, I would say don’t be afraid to ask for help and support from friends, or to ask any questions to the midwives and doctors. People may not know what it is like to be in your position, but they do understand that it is a difficult and stressful time for you, and I am sure they will be happy to help.
If you would like to read more about Clare's Pregnancy and birth, please see previous blog posts:
Rainbow Pregnancy Project Part 1
Rainbow Pregnancy Project Part 2
Jessica's Surpise Debut
Jessica is currently a thriving (nearly) one year old, however unfortunately her NICU story was not the end of her early hospital stays. Clare will be writing about her struggle with jaundice soon, so keep an eye out for her next blog post!