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. 

   
 

Happiest day ever

well little lady, you’ve done it!!

Officially oxygen free. I’m so happy and I’m so proud of you. I’m sitting having a wee cry. 7 months of shite and you’ve done it 😃

Head consultant is so happy with your progress and you had you’re first big girl eye clinic the other day too. Everything is perfect. 

I love you so much. 

Happiest mummy in the world honestly. 

  

Sleep study results

well we FINALLY got your sleep study results back yesterday. A whole week later. 

YOU PASSED. woohoo. 

Instead of taking you off oxygen for 12 hours a day, they have taken you off the oxygen all together! You are currently having a sleep study as we speak. All tucked up in bed so fingers crossed you pass. 

We took you away from Sunday – Wednesday. Nice wee break up north of Scotland. 

You’re just the best baby in the world Olivia. 

XXXX

Fourth Sleep study

well you have another sleep study tomorrow night baby girl. They are letting us do it at night time again so I have my fingers crossed that you have a settled night and don’t kick about too much!

I will so freaking happy if you pass. You have been doing Great off the oxygen and the weather has been great. Just makes me sad when I have to put the oxygen back on you at night time and you get so upset. 

Hopefully not long now gorgeous

Xxx

Sleep study results

im so proud of you Olivia. 

You done so good in your sleep study that you are allowed off for 8 whole hours!

I’m so happy. I can’t explain it. My heart. Ahhh. 

Next sleep study on the 27th. 

  

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. 

  

Eye clinic

well little poppet, you got discharged from the baby eye clinic a couple of days ago woohoo. Every milestone and all that. The Dr said he was really worried about you when you were born that your blood vessels wouldn’t form properly etc but he’s really pleased with you! You move into the big kids eye clinic now just to check your vision etc moving forward. 

Had your physio appointment also but they said its way too early to tell anything about your development so you will need to attend the physio for quite a while I think. It’s amazing that the NHS are able to provide this level of after care. I’m so thankful for everything. 

Will find out tomorrow when your next sleep study is. One night this week I hope as the tubes are annoying you so much. Woke up this morning and you had ripped them off your face! God knows how long you didn’t have them on for haha

  

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. 

Third Sleep study

well your sleep study got cancelled on Monday and we had it last night instead. 

All went well I think! You were sitting between 98-100 most of the time so I’m pretty optimistic. Touch wood!

It’s a public holiday on Friday and Monday so I might not get the results back until next week which sucks. 

You got weighed on Thursday and now weigh 10lb 15. So good. You really are a dream. I love you so much. It’s hard to explain but I really feel complete and that its you that has been missing from my life to make me happy. 

Fingers crossed for the results!

Sleep study results

well we got your results. 

You didn’t pass but you didn’t fail either. There were 4 hours of corrupt data basically that they couldn’t use. The Dr said it would probably fine but because it was 4 hours they want to be safe. 

No changes to your oxygen for now which is a major bummer. Next sleep study scheduled for Monday 30th. 

You now weigh in at 10lb 2oz! Fairly getting there little lady 😊