Our NICU Journey- Week Three (part one)
Another week, more hospital NICU visits to come and I begin to notice the toll it’s having on all of us. The tiredness, the worry, the stress, the juggling of normal life with hospital life. You can only fully understand all of this if you have been in the same position, it’s a whole other world. Having Jake around is a lovely distraction from the seriousness of it all but trying to balance his needs with yours is a skill I am only just about managing.
It’s Tuesday which means you are 34 weeks. I have Jake at home all day and he has a gymnastics class so we pop up to see you first thing so I can do your feed. Jake has made some friends in the nurses and he is well-behaved today and happily sits and does some colouring in with one of them. I may have said this before but they are truly amazing at their jobs. Not only do they look after all you babies, they see things that must be heartbreaking, they stay strong for every person in there and they provide support to all the families.
The pictures are put up in your room to make it a little more homely and friendly and because Jake really wants to do it!!
Once you are sorted we leave to go to gymnastics, it is so important to keep his routine at a time like this and to ensure he is included. Today he receives his third badge and certificate so I am a proud Mummy all round.
I need to try to establish breastfeeding to prove that you are fit to go home once you are old enough so we return at 2pm to squeeze another feed in but we find you are a bit unsettled. It’s unusual to see you awake or to hear you cry so even though it is upsetting to see you distressed it is also a sign that you are developing. The nurses have attempted to use a cup for feeds when I’m not there in order to encourage your swallowing reflex. Unfortunately, this has become a little messy and you are spluttering because you are trying to suckle. We make the decision to move onto a bottle and use my expressed milk in there. We want to get you waking for each feed and not have you filled up via the tube. The doctor decides to start you on iron supplements too. You will go home on these as well as the multi-vitamin and will have to remain on them until you are weaned.
After a chat with the staff I am told that you are doing really well and even though they aren’t doing much for you anymore, you are still just a little too young to go home. The focus is now on feeding and growing and proving that you can show signs that you are hungry and are able to work for each feed. I’ve been told that this process can feel very samey and it may not feel as though much progress is being made but it is a good stage to be at and that I shouldn’t get disheartened that things aren’t changing each day as they have been, you have already come so far and this is the last little stage.
Wednesday is weigh day (this happens twice a week with the other day being a Sunday) and today you have increased to 2125g which is 4lb 11oz. Brilliant! However, what isn’t brilliant is the fact that you’ve been cold overnight which could be a worry for when you come home or it may delay your homecoming altogether. Trying to maintain your temperature will burn calories which will lead to weight loss so keeping you warm is a priority. They had to administer a tube feed to help to warm you up but the rest of your overnight feeds were from the bottle and I am told you did very well.
I am then told that as I can be in all day today I can do on-demand breastfeeding! This has made me happier than I have been in weeks. I get to be Mum, I get to watch for your cues, I get to feed you the way I want to and I get that constant closeness. Seeing you wake and look for me is the best sight I’ve had since being here. You know what to do, your instincts are definitely there and I finally feel content.
The doctors come around and say you are still too small to go home… I think they can just see in my face what I want! However, this time next week we may be in a better position! They advise to just carry on as we are because everything is going well.
Your Daddy comes up to visit you after work. It’s been so tough on him having to go back and it’s limited his time with you. He is going to be over the moon once you are home and he can see you every day.
On Thursday I am really pleased to hear that you have managed bottle feeds all through the night. Once you have been off the tube for 24 hours you can have it removed. That is one thing I will gladly see the back of. Turned out that you’d already had enough too and when I am busy talking to a nurse you pull it out yourself!
I can’t spend the day with you because I have to collect Jake at 12:30pm and I have his pre-school review plus we have very little food in the house so I need to get to a supermarket. There just hasn’t been the time to get the usual chores done. I feel guilty for knowing that I probably won’t be back that day but I can’t let everything else slip.
However, just as I am thinking about leaving, the doctor does his round and I overhear them saying that you can come home on Monday! No way?! Have you really improved that much little man? The nurse practitioner comes in to confirm what has been decided and even though they don’t usually let babies home under 35 weeks it will only be a day early and you aren’t having any medical treatment now. This is brilliant news and I can’t contain my excitement! I am told that I will have to stay overnight in their accommodation to ensure that you can feed from me all of the time and so I can learn to listen for your cues. This will happen one night at the weekend.
I rush off to collect your brother, have his review (which is all positive), do the food shop and then whizz around the house completing all those yucky chores I have been ignoring… you have been my priority.
Jake decides he wants to see you so we return to the hospital at 4:15pm for what was meant to be a short visit but you want feeding and changing and Jake is far too busy flirting with all the nurses so I can’t get away!! The nurses are so amazing with him and tonight they make him a Dr Jake name badge. He takes it upon himself to take a stethoscope and walk around ‘helping’ the staff with the babies. We finally get away at 6:30pm. Who would have thought a hospital could be so much fun, eh?!
On Friday both myself and Jake are shattered. He has been waking almost every night since my first hospital stay when my waters broke and it seems to all be getting worse. His emotions are all over the place and one minute he can be angry and the next he will be in tears. I know he picks up a lot from me and I have tried to cover up how upsetting the whole situation has been but he is far too switched on for his own good. We decide to chill out and have cuddles in the morning. Jake needs me right now.
We get up to you mid-morning just as the doctor is doing his checks. He is still pleased with your progress and again tells me that Monday is fine for you to go home. The nurse gives me an idea of what we need to know in order for you to come home and one of the requirements for a baby born 32 weeks or before is that we receive resuscitation training. This can be done later on so I arrange with your Daddy for us all to come up late afternoon.
In the meantime, I take Jake home to grab lunch, do some washing and basically just start to nest– a process I completely missed out on this time around.
Later on, we return for our training which although is scary to think about I am so glad this is offered because I wouldn’t know what to do if you stopped breathing. We are also given choking training, sleep advice and we (well me) ask lots of paranoid type questions. I’m acting as though I haven’t had a baby before! Jake gets involved and has a go at performing the resuscitation on the doll too, good job if we all have an idea of what to do!
You also have your car seat challenge which is where you are sat in the seat for an hour whilst linked up to the sats monitor again. You are checked to make sure you can breathe and that there is no risk to you. The seat looks massive compared to you and you need a muslin rolled up to protect your head from knocking around.
After all of this, I am asked to stay over that night! I am taken aback that things are happening so quickly but if we can have you home tomorrow, which is a possibility now, we will all be overjoyed. I rush home to pack a bag.
Once back at the hospital I am settled into one of the rooms in the flat. The flat is part of the neonatal unit and consists of 2 bedrooms, a bathroom, a kitchen and a living room. I am given the single room because Daddy has to stay home to look after Jake, so it’s just me and you tonight kiddo!
The nurses come to discuss your temperature issues with me. It seems your body hasn’t been maintaining it’s temperature for most of today which means if it continues like this you won’t be coming home. It is something that needs to be closely monitored. I completely understand, even though it is a bit of a blow, but I certainly don’t want to get you home to return a few days later with you ill. I just hope that it’s a blip and you will begin to control it again.
We get settled into our room and are left alone together, I finally have you all to myself and we get to spend our very first night together…
To be continued…
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