A Letter from Lauren

This is a story that every parent will tell you: the story of coming home. Here is Lauren’s heartfelt account. Most neonatal networks are now employing Care Coordinators to support this important journey from hospital to home. Lauren wrote her piece keeping in mind what is important in bridging the hospital-home environment. It’s meant as a letter to the professionals who are helping families with the transition home.

Our daughter Alexa was born at 25 + 2, weighing 588g, on February 19th 2014. She was delivered by emergency C-section due to my severe early-onset pre-eclampsia. We were in the hospital for seven and a half months; 10 weeks in intensive care. Having a premature and then sick baby was awful. I would love to say that we handled it so gracefully, that we were strong and composed. But my husband and I were both a mess. It was relentless and sometimes impossible; the stress, worry and weight of it.

For anyone in hospital, the holy grail is going home. We had been in hospital for about six and a half months when the ‘pathway to home pamphlet’ arrived at Alexa’s cot. We eventually left the hospital on a Friday night with our baby (and her oxygen tank) in a car seat.  We were euphoric.

But we were not at all prepared for what it was going to be like.

I’ve shared some thoughts are below which might be useful for discharge specialists and care coordinators, as they help parents navigate the transition from hospital to home.

We took Alexa home after what was the hardest thing we will ever go through. Emotionally we were completely worn out; we were broken with little in our reserve tank and yet what was ahead was going to be hard. We had way less resilience than we would normally have had.

We were completely institutionalized and used to having a team of nurses and consultants to help us and answer our questions and concerns. Alexa came home on a feeding tube and on oxygen. I remember the first time I picked up the prescription list from our local chemist, the pharmacist looked completely shocked with the amount of medication I was collecting. The seriousness and responsibility of it all was terrifying.

We loved the team at our big London hospital; they saved our daughter three times. We trusted them so completely and we were in the hospital for so long that they were like an extension of our family.  I was wary about being discharged and dealing with new medical people; would they really know us and know enough?

Because we were in the hospital for such a long time, I felt like I really knew the medical history of my child; I probably gave opinions on things that the home team knew much more about. I think I needed to do this; it helped me process and validate all that happened.

It is lonely having a sick baby at home, and hard to find people who you can relate to.

Alexa spoke late so we had new sessions when she was almost 3 with local speech teams. I found this really hard, starting all over with strangers with little context on our history.

The list of things parents of sick babies have to do and think about is enormous. I often felt overloaded, and that I was falling short in so many areas. The sessions with our developmental therapist were always a joy. She made Alexa and I feel like we were doing amazing; that we had done our homework, we had spent enough time on the activities and we would be ok. Everyone should be lucky enough to have sessions like these.

I found comfort in the words of a Rabbi: He said that God only gives us things he knows we can handle. I found myself repeating this often.

I think, as parents are sent home with their babies who are sick, they perhaps need reminding that it will be hard but it will also be amazing and that you believe in them. Tell them that in your opinion, they are going to be able to manage it. I think your belief in them will help them as they try to navigate it.