I wish I was able to write blogs weekly, but as you can imagine, the last few months have been a crazy busy and a complete roller coaster of emotions. But as of today, baby Emily is 101 days old, a week before her due date, which in itself is extremely bizarre.
I thought it was time to update you about Emily’s status and tell you about our experience of having a premature baby. Some of you reading this may have recently had a premature baby of your own and I hope that in ways you can find comfort in what I write. I spent many hours googling every single word a doctor said and every thought I had and blogs written by other parents of preemies were often the most helpful.
Life in Nicu
We were lucky enough to spend the first 5 weeks in accommodation at the hospital meaning that we could spend as much time with Emily as we wanted, and my older girl Alex could stay with us. This was still hard because occupying a 4 year old in a hospital is a challenge in itself. But eventually they said we had to stay at home because there were sicker babies on the units and another family needed the room. Going back and forth from Bedford to Addenbrookes, and Hitchin for Fane to go to work, was a tough routine to get into, but we got there in the end after much expense and begging lifts were I could to save Fane the odd trip. It did mean that sometimes I had to just stay at home, which honestly was needed! Just to rest and do what I would be doing had I still been pregnant and preparing things for our babies arrival home. It took a lot of planning for each day; what to take to eat, who was taking Alex, what to do with Alex if she had to come with us, when we would squeeze in a food shop and doing the laundry!
I have spent each day going into hospital and watching Emily day after day grow bigger and stronger, but not without her going through a lot. There were countless blood tests, medications, infection scares, blood transfusions and feeds through a tube; it took time to get used to looking after my baby through an incubator. Every day I was getting more desperate for her to be transferred to Bedford, particularly as Alex was about to start school.
The day finally came when Emily was 9 weeks old. She had nothing going on except her oxygen and she was on full feeds and we transferred to Bedford. It was the first time she was in an open cot and in clothes! We were so unbelievably happy to have her closer to home and have both my girls in the same town. And a short time after, Alex started school which was another wonderful day in our lives. Things were definitely looking up.
Life was starting to feel normal again and to add to the happiness, I was able to witness one of best and closest friends tie the knot!
We were told from the start that things can change very quickly for premature babies and they were not wrong. The week progressed and Emily was showing signs of an infection, so they put a cannula back in and started treating her with antibiotics whilst they did tests, including a lumbar puncture. It felt like everything was spiraling out of control again; there had been infection scares before but always negative results. This time felt different. This time I had a horrible feeling. Her tummy was distended and she wasn’t enjoying her feeds, having just started the odd bottle.
Back to whence we came
On Friday the 16th of September, as I attended my friends little ones first birthday, I got a call from the hospital informing me that they had stopped her feeds and had spoken to Addenbrooke’s, they had put her on more specific antibiotics for something called NEC (Necrotizing enterocolitis). This condition was always expected somewhere along the way but we thought we had passed the time frame. Fear struck into our hearts, if the worst was going on it meant surgery, which is why we were transferred back to Addenbrooke’s that weekend.
It almost felt like going home. All the nurses and doctors were sad to Emily back, but were welcoming all the same. They commented on how big she had got and how good she looked, minus the distended tummy. She was immediately looked at by the surgical team and given yet another blood transfusion. Knowing that she would be off feeds for a while they had to put a long line in again, which took days to find a suitable vein and eventually in went in her head.
Watching Emily feel starving for over 2 weeks (10 days nil by mouth and another week getting back up to full feeds) was the most painful of this entire experience. No baby should have to endure such things and no parent should have to watch. It was horrible. Alongside getting bounced between rooms due to a deep clean of the unit! Eventually her tummy returned to normal, she was happy having milk again and her long line wasn’t in for long.
The exhaustion and expense was worse this time; having to drop Alex at school and go on a 2 hour bus journey and sometimes have to get a bus back too, it was tough, but she was obviously in the right place and I was happier her being there and sometimes just not being able to see her at all. Part of me didn’t want to even come back to Bedford hospital but we knew it would happen. She got off her oxygen and started having more regular bottle feeds so it was inevitable.
Last Saturday, Fane and I got to the hospital and were surprised with the news that Bedford had a bed and a transfer was going to happen that day. We didn’t even know they had been in contact. So here we are again, home but not home. This time it is a lot more frustrating and this was again something we were told from the start. We don’t know why she can’t just come home! So for the last week we have gone in each day and watched very little happen. She is off oxygen still, not even got her monitors on and having mainly bottle feeds. She isn’t gaining as much weight as they want, but I honestly think this will improve when she is home and not spending as much time crying which for a tiny baby is masses of exercise. The medicines she is on are going continue at home and we know we are going to go back very regularly for tests as she has a couple of ongoing conditions; so why is she still there? I am sitting at home, knowing my baby girl who is now capable of screaming the place down, is in a room by herself and I am just imagining her being ignored. Which probably isn’t true! The nurses are loving and caring, but not as much as me and her daddy.
We can only find comfort in knowing that it will be soon, very soon. And we just have to hope that we are prepared!
And to sign off, here are some adorable recent photos of Emily being a real baby…