1st hospital re-admission

It has been a long time since my last update but I wasn’t planning on writing again until your 1st birthday. 

So much has happened in what feels like such a short space of time. You’re babbling away and quite happily saying “da da” and “yeah yeah”. You can even crawl! Every doctor and consultant is so happy with your progress. You have still been attending your eye, lung disease, neuro and phototherapy clinics and passing them all with flying colours. I’ll never ever be able to express in words how thankful I am for you to have no problems – I’m genuinely blessed. 

I felt the need to update today as last night we took you to the hospital as you had been very wheezy. This wouldn’t be an issue for a full term child really but because of your lung disease we were advised to take you straight up. After being examined in hospital, we were told you have croup. You were given steroids to try reduce the swelling in your throat but to be honest I don’t think it has helped at all. Anyway. I was told that you were not allowed to come home and had to stay overnight. 

Mummy was allowed to stay with you but I knew it was going to be a horrible night as we were put in a ward with 3 other sick babies who were up all night screaming and crying. You would normally sleep from 7pm – 7am so you were totally thrown out of your routine. 

Being back in that hospital overnight was the worst feeling. My heart was just in my stomach the whole time and my head was filled wirh all the horrible memories. It never goes away. I ended up having a wee cry, couldn’t help it. Just came out. The last thing we ever want – that any parent wants – is to see you in pain. 

You’re back home now but I’ve to watch you carefully and call an ambulance if I see you starting to struggle. Touch wood it doesn’t come to that, you’re a tough wee cookie. 

   
 

6 months has been and gone!

jeez olive, it’s been 6 months since you were born and I cannot believe it! It started off rocky and full of negative emotions but I can honestly say with my hand on my heart that I love being a mother. I love being a mother to you. No one has ever made me as happy as you do. Happy 6 months baba!

Also, you have your sleep study tonight…. Fingers crossed. 

  

Sleep study results

well, you failed again. 

Not because they think you need more oxygen, again just because there are too many dips. Dips that I, your mother who spends every waking moment with you, knows that the dips happen because you’re absolutely mental and kick your legs about all the time and it’s impossible for me to mark down every single time you’re playing. I know you better than anyone and I know that you do not need this oxygen. 

I’m honestly so upset and started crying when she told me. We now need to wait another 2 weeks until we can do the next sleep study. Only doing the sleep study over night this time since they know they can’t get enough good data off you during the day when you’re awake. 

I’m so fed up. It’s been 5 months since you were born. That’s almost half a year and I still can’t just pick you up and leave the house or walk about the house like a normal person without worrying about tubes or tanks etc. We have come so far and now it literally feels like it’s never ending. 

I asked what would happen if you failed the night one too from moving too much and she said they would want to review you to see why you’re so aggitated. AGGITATED??? You’re a happy little baby that I’ve done my best to make you that way! That’s why you kick and move and smile. Sorry for being a good mum. It’s absurd. 

First sleep study

Today is the day! You’ve started your first sleep study at home. I’m positive you’ll pass this one since you’ve already had 2 tests done on 0.2. 

If you pass, you’ll get put down to 0.1 then have another sleep study completed a few days later to make sure you’re coping okay. If all goes well you will be taken off the oxygen for 4 hours a day and build it up gradually with lots of sleep studies in between. 

The lady was telling us again today how important it is for you not to be exposed to any bugs. These next couple of weeks are crucial for us. I know you can do it. You’re a big girl now and I hope your lungs are reflecting that. 

Aunty Sammi is coming up from England on Thursday for a long weekend just to see your wee cheeky chops!

First appointment back at hospital

well my little lady, you had your first appointments back at the hospital today for your bloods and eye clinic. 

Hopefully we will get your blood results back soon and will be able to stop your medication for your liver. That would be nice! 

They said you are putting on weight exactly as you should and they have no concerns. You now weigh in at a whopping 8lb 9oz! Still a tiney wee baba though, only just taken you out of your “up to 7lb” clothes.  

At your eye clinic they had to dilate your eyes and hold them open with clamp things to look at the blood vessels. The Dr said he is very happy with you as you were one of the ones they were very worried about in the beginning because of how small you were. He’s so happy with you that he is aiming to discharge you after our next visit in 2 weeks time. Fingers crossed! 

Daddy was feeding you in the waiting room and your projectile vomited everywhere. I’m so so glad no one was sitting beside us hahaha. Too much of a stressful day for you I think. 

You have your sleep study next week – will find out on Monday what day it is. I know that I’m your mother and I don’t have to explain myself but I feel like I need to. I know that a lot of people who are close to is read this blog and all I ask is that people be understanding at this moment in time. It is SO important that olivia doesn’t catch the cold or any bugs whilst on oxygen or it’s going to add weeks on to her oxygen. Not only that, it’s extremely dangerous for her to catch a cold with her lung disease at this age. All we ask is that anyone with a bug please doesn’t come to see us and understands why we haven’t taken her out and about to visit everyone, it’s just not worth it for her health. Hopefully it won’t be too long until she’s off the oxygen. Our family already know this but just for everyone else that we have not seen yet.  I had to cancel visitors tonight and delay until they are better. They still had a cough so couldn’t risk it. I know a lot of people are dying to see her but we have been through so much in the past 4 months as a family that we can’t have anything happen now she’s home. 

After your clinic, we had to stop in at a shop. A nice man started talking to us in the checkout lane, telling us that he’s never seen a baby on oxygen before. Just old men. I told him your wee story and he gave his wishes. As we were about to leave, he took my hand and put money in it for you. I couldn’t accept it and pleaded him to take it back which he eventually did. It brings a tear to my eye that a complete stranger could be so kind. I thanked him numerous times and I can only hope that he knows how much I appreciated his kind gesture. We seem to be lacking in people like this man in the world and it’s sad but it’s really touching when to you do meet them. 

First week home

Where even to begin?

First of all, I am madly in love with you!
Second of all, my family is now complete.
We have started our own family now and it feels amazing. Another generation.

You have 2 different kinds of days
1. You are awake from 8am-7pm 💤
2. You sleep all day then stay awake from 6pm – 11pm.

Either way you wake up once during the night for a feed. Such a good wee dolly.

Dad freaked out after your first poop explosion. I think all dads do. Your poop squirted all the way out your nappy, up your back and onto your head. Immediate bath haha.

You get weighed tomorrow by the health visitor you left hospital last Monday weighing 7lb 12oz, so I wonder what you’ll be tomorrow. You’ve been feeding a much higher volume at home now so I expect well into the 8lbs!

If this first week is anything to go by, then I think I have it pretty good. Probably due to the fact I can’t stress out anymore than I did for the past 4 months you were in hospital. Just to hear you cry makes me know you’re okay.

Words cannot explain the love I have in my heart for you. You are my daughter. My first child. My everything. I never want to put you down and it makes me sad when I have to. I treasure every cuddle, every feed. It’s something no one can ever take away from me. You won’t be a baby forever so I plan on doing the best I can for as long as I can.

Day 127…. And guess what?

4 and a half months later…..YOU CAME HOME.

Day 124

Well mummy and daddy are staying with you in hospital tonight and tomorrow. You’ve been a good girl although you’ve been awake for the past 6 hours and only just gone to sleep. As soon as you get out down in your cot you just cry.

Time for mummy to get a sleep before you wake up again. Just want out of this place. 4 months is too long. You’ll love your house and bedroom I promise!

Day 123

Another good wee day baby.

Daddy got to bath you all by himself haha. He done a good job although you just cried the whole time. (Usually you love your wee bath) but I think you were too hungry tonight. You’ve been moved on to demand feeding now so that’s good!

Mummy and daddy will be staying with you at the hospital tomorrow and Sunday and hopefully, fingers crossed, you will be home next weekend or something. So exciting!

Can’t wait to start feeling like a real mum!

Day 121

Nothing really to tell you about today baby.

The small neonatal nasal cannulas arrived for you. No more suffocating you. You seem to be doing fine.

You’re weight has gone down so they are keeping an eye on it. You’ve gone from 7lb 12 down to 7lb 9.

Will see you tomorrow baby. Love you lots. Keep doing well so you can come home please ❤️