Our 10-week rollercoaster – Grant and Katie’s Photo Diary

19/02/2020, 3:12pm

You were born weighing only 1245g (2lb 11oz) after 32 weeks and 3 days in Mummy’s tummy – that meant you were 8 weeks early.

5:45pm - Daddy couldn’t wait with Mummy any longer! He came to visit you for the first time and was very scared because you were so small.

20/2, 2am - Mummy finally came to visit you for the first time. She was not able to leave her bed, but a midwife sneakily wheeled her in bed to your side. Although she had seen you on Facetime, she couldn’t believe how small you were in real life.

20/2 - You had your first visits from all of your grandparents who would not stop crying. Later that day you began to struggle to breathe without support and were intubated twice.

22/2 - The decision was made to move you to Oxford ICU for more specialist care. This was so hard for us, but it was the best thing for you. You travelled with Daddy in an ambulance while Mummy had to wait two hours for her own ambulance as she was still a patient.

23/2 – You had your first cuddles with Mummy and then Daddy. Your little cry was unbearable as you told us all about your adventures so far.

26/2 - The results from a lumbar puncture came back with traces of Meningitis, but thankfully this had already been treated. We were told you were ready to head back to Stoke Mandeville as you were doing so well!

5/3 - You began to be able to regulate your own temperature and so were moved to a hot cot. You were now allowed to wear clothes! Your very first outfit was size ‘3lb’.

9/3 - You moved off of Vapotherm and onto ‘low low flow’ oxygen. You got as low as 0.04!

13/3 - You began to work hard with your breathing. Daddy saw this a mile off and told the consultants for a few days that you needed support. Daddy’s always right! A 5-day course of antibiotics were started, which meant another canula!

15/3 - Mummy and Daddy had been warned about the “NICU Rollercoaster", but today it became a reality as you had to be moved back onto Vapotherm (high flow) to support your breathing. You had been doing so well, and lots of exciting things had happened in such a short space of time. However, you were not ready to come home yet and a few more loops were on their way. So, each day Mummy and Daddy would walk to and from the hospital, recounting the highlights of the day and think about how ‘happy, healthy and strong' you would become.

19/3 - Your haemoglobin levels dropped, so we had to starve you all day whilst waiting for a blood transfusion. By this time, you loved your food, so this was really tough. It did help with your haemoglobin levels though, giving you a much healthier pink glow.

21/3 - We had a new consultant who tested you for everything including COVID-19. You were the first infant to be tested for the virus in the Buckingham Trust! This meant you were moved back into an incubator and put on your own ward (big enough for 6 babies) with your own nurse.

24/3 - The test for COVID-19 came back negative, much to the delight of the ward. The nurse no longer had to isolate herself and the PPE could come off.

25/3 – COVID-19 started to become a lot scarier in the outside world so visiting hours were limited to 1pm - 7pm and 9pm - 6am. Only one parent was allowed to visit you at a time in order to reduce the amount of people on the unit.

26/3 - You began to breathe better so you were moved back into a cot and were able to wear clothes again.

29/3 - Today was weigh day, and we found that you had lost 100g from being starved for three days the previous week because of some swelling they found on your intestines.

12/4 - Mummy gave you your first bath, the reactions were mixed. You hated being on your back but were happy on your front. You smelt amazing afterwards.

16/4 - The doctor mentioned the word ‘home’ for the first time so we could finally see the light at the end of the tunnel. However, there was another loop on the roller-coaster for us as your weekly bloods showed that you had low haemoglobin levels again so another blood transfusion was needed. Today was awful for Mummy as you decided to kick the canula out just as the blood begun to flow. Because only one parent could be with you at a time, Daddy had to listen to Mummy’s cries on the phone. Then he managed to convince the nurses that he should come onto the unit and stay even past visiting hours.

22/4 - We were told that you would be going home with nasal prong oxygen. In order to find out exactly how much you would require, you would need to pass a ‘sleep study’. You failed this sleep study on 0.2 LPM.

23/4 - You did your second sleep study on 0.3 LPM, but you had a very unsettled night, so failed this one too. Part way though, Daddy had to leave the unit as he found it so stressful. The nurses told him to stay at home, but instead he baked flapjacks and brought them back for everyone on the unit to enjoy.

26/4 - You repeated your last sleep study at 0.3LPM and passed with flying colours. During the study night, Mummy and Daddy were told to stay at home as nurse Natalie promised to cuddle you all night to make sure you were happy. Mummy and Daddy had their last ever date night at home without you.

Daddy remembers talking to whoever is up above the clouds. He said ‘enough is enough, we need little Eric home now’ and he prayed that this nightmare would be over soon.

27/4 - Mummy and Daddy stayed in the hospital with you in a bedroom for the very first time. Daddy sat and watched you breathing all night.

29/4 - This was the happiest day of Mummy and Daddy’s lives as, after exactly ten weeks, you were finally able to come home with us!