See you soon, son.

We left GOSH and headed to our local hospital in an ambulance because Noah still needed Oxygen to help him breathe. When we arrived at our local, I waited until Liv got settled and the doctors came to see us. I couldn’t wait to get home, give Theo a massive cuddle and have a shower! Later that night I returned to the hospital with Theo so he could see his Mumma and little brother. Spent a few hours there then took Theo home for bedtime. I couldn’t wait to spend the night with him in my bed, just cuddling all night

The next day we both headed back to the hospital to spend the morning there and bring Liv and Noah home. Unfortunately Noah wasn’t ready to come off the Oxygen, so he needed to stay in hospital to be weaned off nice and slowly. I was so excited to have my family back together again and spend the evening together, but I needed to wait just a little longer.

After three days Noah was off the Oxygen and looked much better. His swelling had gone down a little and he had some colour in his cheeks.
We spent the next two weeks playing happy families, going for long cold walks, managing to attend the council to finally register Noah’s birth, seeing the family and simply being together.

We went back to GOSH two weeks later, Noah had a Cranial Ultrasound which showed us that he had stopped clotting the malformation himself, and that the ventricles (fluid spaces in the brain) had widened. Even though Noah was still considered “clinically well”, feeding and behaving normally, the team decided to schedule Noah for a Cerebral Embolisation on 17th Feb. That evening, before we left GOSH, Noah had a chest echo which showed his heart was under a lot of stress and there was high pressure in his lungs, caused by the malformation in his head. That meant that surgery would carry even more risks, but Noah’s life is now depending on this operation.
This gave me the biggest lump in my throat but I knew I had to hold my little family together and be the rock Liv needed at this point, even though I also needed a shoulder to cry on. That just had to wait.

We met the amazing consultants that were going to be operating and talked through the operation procedure. It sounded bloody awful! See the quote below from http://weillcornellbrainandspine.org/

In a procedure called endovascular embolization, a neurosurgeon inserts a catheter through an artery in the groin and guides it up the circulatory system to the site of the vein of Galen malformation, where it delivers a kind of “glue” that embolizes (blocks) blood flow to the malformed vessel, thus restoring normal circulation. This relatively new technique is a challenging procedure to perform on infants and small children, and it should be performed by a highly trained, experienced expert in cerebrovascular surgery.

The operation was booked for the next week, so this means we can go home.
However, Noah didn’t like to be at home for some reason. The very next day he cried constantly, even Theo couldn’t cheer him up. Something was wrong. I didn’t know what to think. Was he physically well but just a whingy baby? Or was something wrong?
A parent knows their baby best.
We took Noah to A&E because he had started vomiting, explained Noah’s diagnosis to the triage nurse who didn’t have a clue what we were talking about. I don’t blame her, I didn’t really get it myself. I mentioned that we had open access to the pediatrician ward. She jumped up and said “Well come on then!” And started walking pretty fast.

We spoke to the doctors there and got placed into a waiting area. After some time we called our Specialist nurse and GOSH for some reassurance. She said that she’s going to call the ward directly to see whats going on. After some time our phone rang, it was the nurse from GOSH.
“So.. We need to get you here.”
“When?”
“Now”
Shit.

Right. Erm. What about Theo? The house? Clothes? It’s the same nightmare just a few weeks later.
GOSH wanted us to come by ambulance again, but we couldn’t deal with another week without supplies. We promised that we’d get there that evening so we headed home. We packed our bags, took Theo to my parents and jumped on the train. A couple of hours later we were back in Koala ward with the awesome nurses and doctors. Liv stayed with Noah, and I headed back to the same house supplied by The Sick Children’s Trust.

I was already missing Theo, not knowing when I’d see him next.

The next day started with a CT scan of Noah’s head. The results showed that he needed surgery that afternoon. The specialists were called in especially for the operation and I carried him down to theatre.
I’m not sure how I’m going to write how I felt at this point, but I’ll give it a go.
Placing your little baby onto a theatre bed, not knowing if you’ll ever hold them again is the hardest thing I have ever done and wouldn’t wish on anyone. Settling him, making him believe that he’s safe when in fact you know in a couple of moments the anaesthetists are putting him to sleep.
That didn’t sit well with me.
The mask went on and Noah drifted off, sucking the sweet air being blown onto his face.
We gave him a big kiss on his forehead and whispered “see you soon, son”.