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 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 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 ❤️

Day 120

You passed your sleep study!! Woo hoo!!

1 step closer to you finally coming home.
Car seat challenge at the end of the week / beginning of next.

Mummy and daddy are going to come room in at the hospital with you over the weekend to make sure we get used to all your noises and different cries etc so we can ask the nurses any questions we have with the medications/oxygen etc before you come home.

Coming home. Never thought I’d get to say those words. I can’t wait. Never letting you go. Will need a crow bar to get you out of our arms. Mummy and daddy have so many plans for you 😊

Since you passed your sleep study, they have taken you off your saturations monitor. No more wires. No more knowing instantly if you have an incident. This terrifies me. But I guess you can’t be on it forever. Eeek.

Day 119

Hi baby.

You had another unsettled day. You really need to come home. You’re just bored and need attention. Mummy has bought you a musical thing for your cot so I’ll bring that in tomorrow and hopefully it will keep you entertained for a bit.

The results of your sleep study haven’t came back yet but will have them tomorrow.

Keep it up little lady.

Day 117 & 118

Whoops- forgot to post last night, was far too tired!

Yesterday, you had your hearing tests and the lady said you passed with nothing to worry about. Made me so happy! One less thing to worry about 😀

You’re such a cheeky wee lady. The nurses said you were awake today from 8am all the way through to when mummy and daddy came to see you and you finally fell asleep at 6pm. You wouldn’t let me walk by you without a chat or a cuddle. Apparently you cried until someone came to talk to you!

You’re on 4 hourly feeds now but ta not enough, so they are going to let you demand feed from tomorrow hopefully. Should help you sleep better now and get in a normal routine for whenever you come home. Fingers crossed it will be by the end of this month.

They are still keeping an eye on you and doing a sleep study on you tonight so will get the results tomorrow.

Oh and you’re now a whopping 7lb 12!!!

Day 116

Well my darling! You had another good wee day today.

They think they know what’s been wrong with you this whole time. It’s really annoying since you could have been home last month and all these incidents of me nearly losing you could have been avoided.

It’s your nose! Your tiny wee nose. Sorry you got my nose haha. The nasal cannula has been too big and has been blocking it. It’s basically like you’ve been choking on it. You’ve been struggling so hard to breath and couldn’t breathing at the same time when you were feeding hence the choking, desats and Brady.

They changed the prongs to the tiny ones and you’ve been fine. I really really really hope that’s it. It would be so amazing to know that’s he problem.

AND you got taken off ALL your drugs!! Woohoo! No more drugs for your liver and since your milk got changed you don’t need all the extra vitamins. I’m so happy.

Sleep study over the weekend to make sure you’re doing okay on the 0.2 oxygen.

See you tomorrow honey.