Our NICU Journey- Week Three (part two)

our NICU journey week three part two

Our NICU journey continues:

That night in NICU…

I was told about prem baby’s and their little noises but wow, I wasn’t prepared for quite so many groans, grunts, snuffles and squeaks! I wasn’t sure if I was going to get any sleep but you settle after a 2am feed and you go through until 4:30am then wake again at 6:30am. You show me that you can breastfeed on demand and wake for it ok. Your temperature seemed ok throughout the night– I checked the back of your neck, your chest and your back just to be on the safe side… I may have also checked your breathing a little too much!! I can see how I am going to be once you are home.

william asleep in his cot

The nurse pops in to see how we have done and she seems really happy with you. As she is a ward sister I trust her opinion and she tells me you can go home today! I am overwhelmed. We can finally be together as a family!

I’m told we need to wait on your discharge papers and medication but I can easily wait a few more hours, after all, I’ve waited three weeks. It is the first time in 5 weeks that I start to feel chilled, so much has happened and there has been so much worry and stress but I feel this is all going to wash away very quickly.

william asleep laying across my lap
William chilled out after a feed

We both nap a little more and when you wake for another feed the doctor comes to do his rounds. He is more concerned than the nurse was and after discussing your temperature issues and seeing that your poo has turned slightly green, he tells me you won’t be going home…

My excitement turns back to worry and also to disappointment. He then asks me to stay at the hospital until Monday and to continue the care for you. I reluctantly agree in the hope that he may change his mind by tomorrow but I have to consider Jake in all of this too. I have been so split the last few weeks. I have tried my hardest to do what is best by everybody, to keep both my boys my priority and it has been so tough. Once you are home I can be a proper Mum to both of you.

The nurse is asked to continue with temperature checks every 4 hours and to split your medication up to see if it is the reason for your messy nappies. Your digestive system is still so immature, well, you aren’t meant to be here are you?! So, it’s not surprising if things begin to upset you.

william laying on a bed in NICU
Just to show how tiny you really are!

I phone home and your Daddy is gutted that you won’t be home today. He goes on to tell me that Jake woke at 5am upset and wanting me… another dagger of guilt. They decide to get ready and come up to visit us but it doesn’t go well. Jake is clearly very tired, very emotional and begs me to go to the park with them to play. It takes all my strength not to burst into tears. In the end, Daddy has to take him home because of his erratic behaviour but Jake can’t even bring himself to say goodbye to me. It breaks my heart to see him like this.

Your temperature is still not reading high enough but that could be because you have such little body fat that the thermometer cannot get an accurate reading. You still feel warm to the touch but you aren’t hitting their magic number of 36.7. The nurse on duty for the day tells me that if you can’t regulate your temperature you won’t be going home and that you could be here for another week. You need to get bigger and stronger little man. All I can do is sit around the hospital and wait.

I stay over for another night and the nurse looking after us comes in throughout to take your temperature. They really aren’t taking any chances on this. The results are still varied and the ward sister calls a doctor to discuss them and I am given the upsetting news that you won’t be going home. I suddenly feel what can only be described as a wave of grief and as though all I have done that weekend has been pointless.

Everything I’ve been through over the past few weeks hits me like a ton of bricks and as I speak to the sister it takes all my strength not to break down and sob on the floor like a baby. I know you have to be strong enough to cope with the outside world but my hopes had been raised and now they have been crushed, I just want you home with us all.

I am still asked to stay until Monday, I think because they want me to continue your care as they aren’t giving you any medical care themselves, but I can’t stay knowing that my other boy is distressed at home. I explain that I need to be there for him and I go to pack my things. The tears begin to fall as soon as I step into the bedroom, I can’t stop them. My emotions have taken a pounding and it has all finally caught up with me. I pull myself together to say goodbye to you and the nurse and I hurry out of the hospital, I need to get away. But the tears return as soon as I drive away and once I step into the house I cry, I really cry, one of those uncontrollable cries which is so unlike me but this is what happens when you try to be strong for so long. The issues with the pregnancy began at 24 weeks, I knew I wasn’t right, I had been tired and achy, I had bleeds, I lost my mucus plug, I was diagnosed with group B strep, my waters broke, I went into hospital, I was put on rest and then you suddenly arrived at week 32. I held you for a moment and then you were taken away to NICU. I have seen them prod and poke you, put needles in you, take blood, give you treatments that seemed so much for such a tiny body to take and in all of this all I wanted to be able to do was to have my gorgeous newborn home with me so I could do all those firsts, so I could take care of you properly and bask in that new Mum pride. 5 weeks of worry and anguish just poured out of me.

I decide to stay at home for the rest of the day for all of our sakes. Poor Daddy has had to hold the fort so much in all of this, Jake has missed me and I am risking my health by doing far too much. I phone the hospital at 9pm to see how you are doing. I am told that you have fed well from your bottle and that your weight is up again, this time to 2175g. Everything is positive except for this body temperature issue.

I return to visit you on Monday after I drop Jake to pre-school, as I always do. Your temperature is still being closely monitored but otherwise, they are happy with your progress. I decide to sit with you all morning and wait for the doctors and then I plan to go home and have a rest before fetching Jake. I’ve realised that I need to take a bit of time for me after yesterday’s meltdown.

William asleep in his cot in NICU
Your last photo in your hospital cot

However, everything suddenly changes. The doctor comes to do her rounds (one I haven’t met before) and she tells me you can go home!! I just sit there and stare, I am in shock and to be honest I don’t know whether I believe it! Are they going to change their minds in an hour or so again? She insists that you are absolutely fine to go and that even though you aren’t 35 weeks until tomorrow they will make an exception over that one day. At this point, I don’t even know if I can be happy. I am worn out from it all, I was told several times over the weekend that you would be home only to have that hope taken away from me and now all of a sudden you are ok to go?! It is a strange feeling.

Now there is a new problem, they ideally want you to go as soon as possible. I have to collect Jake at 3pm, Daddy is at work and he has no time off left and we are generally completely unprepared! I phone Daddy to tell him the news and he goes off to see what he can do about work. I double check everything with the ward Matron and Sister and they tell me that your medication is being ordered and that you are most definitely ready to face the world.

A plan is made with the staff and with your Daddy. He is going to come home early from work and all three of us will come to collect you at around 5pm. Oh my goodness, this is really going to happen!

Back at home I tell Jake you are coming home– If I only I had filmed this! He beams a huge smile and leaps into my arms and holds me so tight. I knew he would be happy but I was not expecting that reaction at all. I am overjoyed.

Up at the hospital we sort out all of your things and begin to pack. It is like packing up after a holiday, have we got this, have we got that, have you checked under the bed?! We are given your red book, your medication and I clear out what turns out to be a mountain of expressed milk from the fridge and freezer! (All that pumping paid off!!)

It is then time to thank all of the amazing NICU nurses and to say goodbye to them… I was not prepared for this.

These wonderful women helped to save your life and have cared for you around the clock to ensure that you became stronger and healthy. They work 12-hour shifts or more, they chat to everybody who comes in, they support all the parents and they have become people that I have come to rely on. In three weeks it has felt like I have made some new friends and even though I am so happy you are well enough to come home, saying goodbye to them all is hard.

Now, I am not a crier. In fact, I hate crying in front of anyone and I will hold my tears in until I’m alone but there was no way they were going to stay in today. As soon as the Matron hugs me the floodgates are opened! I’ve never had any experience of NICU prior to this but I have been taken aback by what these superstars do. I know I would never be able to do their job because it would all be too much for me but what these women do day in, day out is life-changing and of course, life-saving.

After more emotional hugs we are ready to leave and as we walk out of those doors one last time I cannot believe how far you have come. You are a true fighter and I finally get to take my baby home for good.

me, Rob, Jake and William finally home on the sofa

A happy ending to our NICU journey at last.

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