The light at the end of the tunnel.

The journey back to our local hospital was very different from the one we had to Great Ormond Street Hospital. Going down to London, there was a sense of apprehension, worry and anxiety. Heading back to our home town, I felt relief, happy and a great deal lighter. The large weight had been removed from my shoulders during our time at GOSH. We were so happy to be transferred back home. Even though T needed to recover in hospital still, for my husband and I, the thought of sleeping in our own bed was the pick-me-up that we both needed. 

Unlike last time, my husband and I travelled back to our local hospital separately. I rode in the ambulance with T and my husband travelled home with our belongings with my father in law. It was strange to be in the ambulance without my husband, but it didn’t worry me too much. Heading back to our local hospital was a big step. A big step in the right direction. During the journey back home, I could finally see the light at the end of the tunnel. 

I had a lot of time to think during the journey back. And I found myself trying to plan what would need to happen for T to be ready for discharge, and how long that could take. This was all wishful thinking, as there were elements that I hadn’t even considered, nor were they things that I was in control of. Truthfully, I think I was getting ahead of myself slightly. Which is actually very unlike me, as I am very much a glass half empty type of person. But I was beginning to feel excited at the prospect of T coming home, especially as we were closer than ever to this being a reality. 

One thing I hadn’t foreseen was T needing to be in an enclosed incubator for the first few days back at our local hospital. I don’t actually remember how long he had to be in it exactly, but I do remember the disappointment that I felt when I was told this was to be the case. The reasoning behind it made perfect sense – babies coming back from a London hospital have to be tested for various infections before they’re allowed in an open cot. Almost like a quarantine scenario. So I understood why, but couldn’t help but feel we had taken one step forward, and three steps back. 

We had the weekend to settle back into our old routine. It was beyond great to be back in our own home. It made the world of difference to us mentally. We had also come to the conclusion that after the weekend, my husband would return to work. We felt that it was the right time, as we hoped that he could take some further time off here and there once T was allowed to come home. So I spent my days with T on the NICU, and Daddy would visit after work for a couple of hours each day. I was really nervous about being there on my own. I’m not quite sure why. The staff were all lovely. And by that point, we knew a lot of them on a first name basis. I just found it to be really daunting. But I figured, if we hadn’t been in the NICU, I would have been at home with T on my own by this point. And once he was allowed home, he and I would be on our own from the get go, depending on if/when my husband was able to take a little more time off work. 

T and I spent the week working on breastfeeding. He had been tube fed from the start, but pre surgery he wasn’t able to tolerate feeds, and so it wasn’t really until post surgery that tube feeding become a regular occurrence. Having double pumped during our time in the NICU, my body needed time to adapt to T’s feeding schedule. We were also visited by a speech and language therapist who was able to check the latch and she was happy that were on the right path. It was also a confidence booster for me, as I had never breastfed before, and was unsure as to whether I was doing it properly. 

Our unit had a couple of bedrooms where parents could stay with their baby in the days before they were discharged. The team were happy with T’s progress but wanted to ensure that we fully established breastfeeding before T could be discharged. We had been back from GOSH for a week when they asked us to stay that night. All of a sudden, that light was within touching distance. I was excited, but felt I still had an important task to complete before I could get too over excited. 

We quickly settled into our room that Friday evening. We wheeled T from the unit into our room for the night. It was really reassuring for us to have T all to ourselves, but know that the nurses and doctors were just a stones throw away. This was ideal as our nurse for that night had suggested we bite the bullet and remove T’s monitors. Ultimately, we wouldn’t be going home with them, and so now was a good time to start getting used to life without them. It was a very big step, one my husband and I were really nervous about. But we ripped off the plaster, so to speak, and we removed the monitors. It was going well until we actually had to go to sleep. I don’t think either of slept that much overnight.

The following morning, the team were happy once again with T’s progress, his weight gain. And so it was mentioned that on Monday, if things kept improving in the way that they were, that we would be able to take T home. I was giddy with excitement for a few moments, and then I stopped myself. I didn’t want to get my hopes up. We still had to keep going with breastfeeding and hope he would continue to gain weight. I almost didn’t want to know we could go home, until they were ready to discharge us.

We spent out second night in our room on the unit. It was Sunday. I remember we wheeled T back to his spot and as he was napping, we took the opportunity to grab some breakfast from the canteen. We were only away for about an hour, and soon headed back up to T ready for rounds. They weighed him and asked me about breastfeeding. And then they asked if we wanted to take T home. Today. I was gobsmacked. I wasn’t prepared for today. I burst into tears. Happy tears of course, and I just looked at my husband, and he was beaming back at me. The day had finally come. We could take T home. After 31 days, he was ready to come home with us. 

It was a few hours before they had sorted all of the discharge papers for us. In between nappy changes and feeding, we began to pack up all of our things ready to go home. When my husband came in on the Friday evening, he had thought to bring the car seat with him. It was in the car, ready and waiting. He started taking our things back down to the car and he brought said car seat back up with him. It was almost surreal. I couldn’t believe it was happening.

We got T settled and snuggled up into his car seat. And all of a sudden, we were literally, ready to go. All I kept thinking was that I couldn’t believe he was ready. I suddenly felt very unprepared. It then occurred to me, that this must be how all parents feel when it’s time for them to take their baby home. We just had that feeling a little later than everyone else. We were presented with out paperwork and had a follow up visit at home booked in, and then we were free to leave. We had walked through the double doors at the entrance to the NICU so many times during that month. But never had we walked through them with T. It was a very big moment in our lives, and I will never forget the feeling. It was our turn to go home, having watched other families leave during our stay, and I can safely say, it was worth the wait.

We got down to our car, I hopped into the back seat as my husband got T into the car. And we endured the slowest car journey home ever! I remember arriving home and getting T out of his car seat, telling him that this was his home and how happy we were to finally have him here with us. We were sat in our living room and I looked at my husband and said “What do we do now?” We were on cloud nine. And despite not knowing what on earth we needed to do next, I was filled with the sense that this must be a normal feeling for all parents with a newborn. I was so grateful to have felt like that, that’s all I had wanted all along. We had finally reached the end of the tunnel, and it is a moment that I will never forget.

Promoted to an open cot.
Homeward Bound

This Post Has 2 Comments

  1. Elin

    This post made me cry! You both must have been filled with so much joy and relief when they said you could go home!
    Although we have a long way to go that finish line of going home is always in sight and each day we feel I’ve step closer to that destination.
    Equally the thought of bringing our little boy home without the professionals, without the monitors and without the reassurance of hospital terrifies me. I guess by the time he is ready to come home he won’t need these things. I’m not sure how we’ll sleep or relax for a while though when the time comes; the challenges and months in NICU will be etched in our minds.
    It would be great to know how you managed to adapt to normal life, to not worry about going to sleep or checking T was ok every few seconds. x

    1. Sam

      Hi Elin,
      So sorry to have made you cry! It was an emotional time for me and I guess this was reflected in this blog post.
      I am going to talk about what happened when we got home, and during that first year, in my next blog. So I will bare your comments in mind whilst I write it!
      As your little one gets stronger, you will gain more confidence. Taking the monitors etc was particularly tough but it was great to do it a couple of days before we left rather than have them removed as we were being discharged.
      Hope you’re all doing well! Xx

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