Our NICU Journey- Week Two

our nicu journey week two

One week has passed in NICU and so much happened that it was all a whirlwind. We had the elation of your arrival, the relief of you doing so well but also the sadness of leaving you behind as we went home each day without you. I’m not sure what to expect this week but I have a funny feeling it’s going to be even more emotional as time goes on.

Today (Tuesday) you would have been 33 weeks if you had still been inside me. You are still teeny but still doing so well. After one week you have come out of your incubator and today I can’t find you! I walk into intensive care and there is a space where your cot is. A nurse spots me looking a little bewildered and she tells me that you have been moved to your very own room! How have you come so far in such little time? You are now in one of the cubicles as the four cot room– which should be the next step– is completely full. You are still on monitors to check your heart rate, pulse, and respiration but you are proving to us that you are such a little fighter. You are also off the caffeine which was being used to regulate your breathing. You will have to be closely monitored to ensure this remains the same but I am so happy that it’s another step in the right direction.

premature baby in NICU iwth feeding tube in his nose

I go upstairs for my midwife check and my results are back from the placenta and afterbirth. Sure enough, it was all infected and that was the reason for me feeling so ill and for you coming far too soon. The human body is just amazing because if you had stayed in there you could have died, instead, the body made a decision to begin labour and save your life.

After spending the morning with you having cuddles, changing nappies, changing clothes and doing all those normal Mum things, I go home to have a rest but after a few hours my emotions just erupt. After seeing that you have become more baby-like, being able to hold you freely and feeling like you are doing so well it has made it all more real leaving you behind and my maternal pull has gone crazy and all I want to do is be near you and hold you. My feelings come out in a huge crying session, probably the build-up of everything over the last week and the only remedy is to race up to the hospital to be with you. I spend a couple of hours just sitting and cuddling you which brings on this wave of happiness and contentment leading to the best night’s sleep I’ve had in days.

Today (Wednesday) I am flying solo as Daddy is back at work, so I am going to try to keep things as normal as possible for Jake but I still need to be there for you. It is weighing day and after a drop in weight on Sunday I am anxious that you may have dropped again. Nope, not my strong little lad. You have gone from 1860g a couple of days ago, up to 1920g which is great news because it is another step closer to getting you home. The reason for this is mainly due the fact they have upped your feeds via your nasal gastric tube. The downside of this is that they are giving this to you every 2 hours which means you are full all of the time and you won’t wake to feed from me. I understand why this is being done but it’s taking away something that my maternal instinct is crying out to do. It is another area that I just need to deal with so I decide to get involved with the tube feeding to feel apart of this activity.

me holding the feeding tube to help my baby get his breastmilk through his nose

One new thing you do today is cry when I change your nappy. This may sound strange but you have been so silent since birth that it was so lovely to hear you do a normal baby thing.

Your big brother insisted on coming up after pre-school to see you today and he begged to hold you. I reluctantly let him and just about managed to let go for long enough to get a picture.

I spoke to the doctor today (Thursday) and the good news is that you are doing well and the focus now is all on feeding and growing. They have understood the issue with the feeds being every 2 hours and we can now move onto 3 hourly feeds and just hope that you start to show signs that you want to breastfeed again. Unfortunately, Jake woke today with a cold which means his visits are out of the question until he is over it and he has to be clear of it for 48 hours… this is going to be tricky and he isn’t going to like it. I’m not sure how I am going to work things out with visits for myself, especially as I want to be there for more feeds but I knew that if any of us became ill we would have to stay away from the hospital.

Jake finishes pre-school at 12:30pm today which means I know I have to come away from you and I can’t go back. To cheer me up I have a lovely visit from my sister and a friend. My friend is an absolute gem and she brings gifts that are well needed and it means so much. Until you have been in the neonatal environment you have no idea what is important but she had everything spot on: Chocolate for me to keep me going, a tiny outfit for you and a blanket to keep you warm, a puzzle for Jake so he feels included and some skin products because the warm air dries my skin out and I’ve been really suffering with areas on my hands and face. I suddenly realise how much I need all this and how much I need to offload and to just have a chat with adults.

When they leave my emotions become too much again and I just sob my heart out. I want you with me so much, I want you home so we can be a family, I want to be able to hold you whenever I like. The guilt of being at home with one child and then at the hospital with the other and not being able to be with both my boys is killing me. I am having these huge waves of emotions that I can’t cope with.

On Friday I have my final midwife check. My sister cancels a spa day so she can take care of Jake for me whilst I go up for this check and to feed you. Yes, your auntie is an absolute star! I’m fit and well so I am discharged from their care. I spend the morning doing all the lovely Mum bits– feeding, expressing, nappies… and I love it. It is so special to be able to do the things I should have been doing from day one.

The doctor tells me that you are to be started on vitamins and folic acid to help with your development later today. You will probably be sent home on vitamins too.

Your poor Daddy hasn’t been up since Tuesday because work has kept him busy so he visits you in the afternoon. By the evening I am completely wiped. I want to go up to the hospital so much but Daddy tells me I am just going to make myself ill so I choose to stay home even though it does tear me up inside.

Sure enough, he was right, I wake at 2 am with an aura migraine, a sign that I am hormonal, emotional, stressed and exhausted. I am adamant I am going to make it in for your 9:30am feed because I need to do whatever I can to get you big and strong to get you home.

Hooray, you feed really well and suckle away for half an hour! The nurse takes the next step and turns off the heater in your hot cot to see if you can now regulate your temperature. After a lovely morning I go home to spend some time with your big brother but I end up falling asleep for a couple of hours and wake just in time to get back up to the hospital to feed you again. On your nappy change you lose your cord, is it weird that I am happy I was there for this?!

I feel as though I am spending so much time jumping in and out of the car but it’s all going to be worth it in the end.

I return on Sunday to find your heater in your cot has gone! The simple things make me really smile. You are weighed again and have gone up to 2050g which is another increase. You feed well off me and there is talk of giving you cup feeds to get you up and swallowing and working a bit more for your food instead of all the other feeds being via the tube. You are making more baby noises today and it’s so reassuring and also very cute. At one point you become unsettled and begin to cry quite a lot but as I pick you up and comfort you, you snuggle into my arm and calm. It is the most wonderful feeling having you respond to me like that.

me holding william on my lap in NICU

I come in Monday and take one look at you and suddenly notice how much your little face has filled out. After almost 2 weeks in neonatal you are visibly different from how you looked at birth. You have gone from being a tiny, skinny thing that needed help with so much to looking and acting like a baby. A baby I want to take home and never let go of! After a chat with the doctor today they decide to switch off your monitor which is reading your heart rate, pulse etc. I am over the moon because this means the only thing that is being monitored now is your respiration. Your improvement just keeps coming.

In all of this, I have felt quite alone on the ward. The nurses are amazing but when you are confined to a cubicle you can end up sitting on your own all day and not have any normal adult interaction. It can be hard to strike up conversation with other parents on the ward because you don’t know their situation or how they are feeling. This week I have seen 3 babies being transferred out to more specialist hospitals, I have seen a Mum completely break down and another being taken for a lie down because of a migraine. It is a place where emotions run high and each day could bring joy or upset, we are all living each day as it comes. Today was different and I had a laugh. Today I chatted with 2 other Mums and I think we all relaxed a little more after. The only room where us Mums can end up sitting together and need to break the ice is in the expressing room. Possibly the oddest room you will ever encounter– a room where strangers sit together and get their boobs out to milk themselves! We had a good laugh about that fact and then chatted about our babies and labour and checked how one another were doing. In all of our cases, our babies are doing well and progressing but you can sense the exhaustion and emotions between us. Yet, to speak to those who know exactly what you are going through is a relief and is much needed.

cubicle in nicu
your cubicle

I can’t even begin to describe the rollercoaster of emotions I have been on in this last week but the only important thing is you, William. To get you bigger and stronger and home.

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