Delilah’s story part four

 

Hello lovelies,

This post is a little late in the day but I got there in the end, many of you have read Delilah’s story so far and if you haven’t then you can catch up on the first one here Going into labour at 24 weeks, the second one here Delilah’s Story (Part Two) And the third one here Delilah’s Story Part 3.

Most of those three posts are based in Oxford’s John Radcliffe NICU, where Delilah spent the first nine weeks of her life but then we had the big move back to our local hospital in Reading, as I mentioned in my previous post this was such an emotional move for me because I grew so attached to Acorn in Oxford and all the doctors and nurses there were so amazing and felt like family with how much care they gave our little girl and moving back to Reading was going back into the unknown it was really quite scary.

Sadly our first day (or first few hours) back in reading seemed to just bring my fears to life. Ben and I arrived at Buscot and after giving the doctors and nurses the time they needed to get everything settled in with Lilah, we then went into the red room to find out how she was doing.

But right away there was something a little off about her nurse at first I just thought she wasn’t that friendly (no biggie as long as she looked after Delilah well) but then Delilah started to cry purely because her dummy that Oxford had given her a few weeks beforehand was slightly out of reach. And this nurse just turned to Delilah and said oh well don’t be thinking you are going to get your own way here because your not and moved the dummy further away from her.

At first I just stood there in shock Delilah was still so, so tiny still at the 3 pound mark and this dummy was the first nice thing that she had, had that was her very own that didn’t cause pain and gave her that bit of comfort, of course I quickly went and gave it back to Delilah was it filled me with dread and I spent most of that day crying my eyes out.

Thankfully even though we spent a further three months almost in Buscot I never came across this nurse again (something I was very pleased about) and the rest of the doctors and nurses where amazing I couldn’t of dreamed of nicer people to look after her and make her strong enough for the outside world.

The next thing I found hard was being further away from the hospital because even though we were back in our home town it took us so much longer to get to the hospital each day, but I was so glad that Delilah got to see her brothers and Nanny more as it was that little bit easier for everyone else to get there, and Delilah got to meet her Granny Ann (Ben’s step-mum) for the first time too.

And although Delilah still had more then her fair share of hiccups along the way it was amazing watching her grow and get stronger. Although some days it still felt like we would still never get to bring her home, especially each time she had her jabs she would be fine for the first 25 hours afterwards but I could literally time it and on the 26 hour mark she would stop breathing for quite a long amount of time (one of those times was when I was giving her a feed and she nearly gave me a bloody heart attack)

 

But so many wonderful things happened once she was back in Buscot too, she had her first Bottle feed (up until this point she had only been tube fed and I was so terrified whenever it was my time to feed her as I was so worried of her stopping breathing when I was feeding her as I mentioned before I was just terrified I would do something wrong.

And I can so clearly remember the first time a nurse handed her to me just like a full term baby (until then we had only ever done kangaroo care) Thankfully my mum was in the family room and I made Ben go out and get her because as silly as it sounds I truly never thought I would get to hold her like that and I have never cried so many happy tears.

Of course we still had so many scares including when she had to go back to Oxford for eye surgery due to ROP and we didn’t know whether she would have any sight left at all even after surgery. But again thanks to some very talented doctors it worked brilliantly and her sight was saved and so that was a very short trip back. But we never even knew that she needed the surgery until the night before it happened it just very suddenly went downhill and the next thing we knew we where being told that if they didn’t do something in the next 24 hours she would be blind.

I did worry because she had to be put back onto the ventilator that they would struggle to wean her off of it again because Delilah had this thing at that point that if she had a choice she just wouldn’t bother breathing but after only a few hours back in Buscot she was back onto Cpap. Although they did have to put a cannula in her head before the trip back to oxford and that was a scary sight (although I did in the end think it looked rather like a fascinator) it’s small thought like these that kept me sane back then haha.

Do you see what I mean about the fascinator???

There where so many other scary and brilliant things that happened in Buscot but once again I think this post is long enough so maybe we could save them for another day,

 

But for now …

Thanks for reading,

Love Benita x

 

 

Delilah’s Story Part 3

Hi lovelies,

I’m continuing on with little Lilah’s Story today and if you haven’t read the first and second parts you can find them here Going into labour at 24 weeks and here Delilah’s Story (Part Two). 

When I wrote the second part of her story I really thought I would be able to cover all of her Oxford stay, but I think I forgot just how much went on there so once again this is probably going to be a long one so grab that coffee and take a seat.

(one more thing as I said last time I really struggle to remember the order that everything happened in so please bear with me)

It took six long weeks and many, many attempts  for the doctors and nurse’s to be able to get Delilah off of the ventilator and onto Cpap and their were many times that it felt like it may never happen. But on the last attempt thanks to a very special nurse basically making sure no one went near Delilah unnecessarily, she done it and amazingly it worked.

But one conversation that stands out to me from this time happened one day when I was sat having some cuddle time with my little girl. One of the Doctors that had been a part of the transport team from Reading to Oxford came over after he had been on holiday for about a week and he couldn’t believe that she was finally off of the ventilator and said that if he was being very honest he really didn’t think she would be able to before he went on holiday, I think a lot of the doctors and nurses were as proud of Lilah for doing it as Ben and I were. Like most thing’s this was just another thing that Delilah wanted to do when she wanted to but its scary to think of what could have happened had the situation gone a little differently.

Another memory that stands out in my head happened on a day that my mum came over for a visit and because visiting hours are only a few hours long apart from parents and siblings we went into Headington which was just down the road from the hospital for a coffee. And as we walked past someone pushing their baby in a pushchair and my mum asked if I was okay. And the thing is that didn’t actually affect me. Yet When I had my miscarriage with Jaime I can so clearly remember being sat in Pret A Manger next to a mum feeding her baby and I literally burst into tears because it absolutely broke my heart that I would never be able to do that with my baby, But this time My baby was just a few feet away fast asleep. And although it was nothing like I thought parenthood would be and I knew she had a lot of fighting to do. Only she was my baby and as long as she was breathing (or at least trying too) I was okay. I mean if she was being so strong the least I could do was be strong for her.

But saying all of that, there did come a point that I just wanted to scream that I was a mum especially as we hit her actual due date and were still nowhere near getting her home.

Then there was the time one of my best friends Kim came to see her for the first time, it was an exciting day for me as apart from my mum coming over and the boy’s as often as possible no one else had ever seen her.

But I should have known that the day would never go to plan as when Kim called me to say she was in the carpark I went to lock the back door of the house we were staying in and promptly fell off the back step and straight on my face haha, always the start of a good day that!

But I still went over to the hospital and met Kim who was also rather excited about meeting Delilah for the first time. we headed into Acorn and straight away something was wrong as soon as I looked at Delilah she was Blue (never a good sign) and very quickly nurses started working to bring her back, all this time Kim (bless her) smiled and said oh she’s beautiful look at her changing colour (Only Kim haha) and the nurse just looked at me as if to say let’s not freak her out and lets just pretend everything is absolutely fine

So there I was chatting away like its no big deal that my daughter is not breathing whilst inside I’m panicking because I could see the look’s on the nurses faces. Bar that moment it was a lovely day and I was so glad I could finally be a normal (ish) mum that get’s to show her friend her baby.

We had the will they won’t they thing going on for awhile with the big move back to Reading and honestly again deep down it was something I never thought would happen but then one morning after nine weeks in Oxford,  when we went in everything was ready for her to be transferred back and we were told to go and get our bags! It was just as scary for me as when Delilah was first born because it was learning the way Buscot worked and meeting all new doctors and nurses which I will write about in the end part of this story which if I can I will put up on Thursday so keep an eye out for that, but for now I hope you enjoyed my extra post this week.

Thanks for reading,

Love Benita x

Delilah’s Story (Part Two)

Hello lovelies,

Today’s post is going to be a long one so grab a cup of tea or a glass of wine (and snacks you will need snacks) and lets get settled in.

I mentioned in a previous post Going into labour at 24 weeks (which you can read Here) that I would follow up with more details about Delilah’s stay in hospital. And because she had such a long stay (a couple of days off of five months) I think this still might take me a couple of blog posts to write it all. And because she is now a very cheeky two and a half year old I am not going to remember everything that happened in the right order, so I hope you will bear with me.

The best way that I could think to do this was to go back over our time in Oxford in this post as, as I had also mentioned before Delilah got transferred there from Reading at just a few hours old.

So lets start at the very beginning Ben and I were sat in the Red room at Buscot in Reading waiting for them to move her across, the things that stand out to me about this time now looking back is watching her she was only about an hour and a half old at this point and was the most beautiful little thing I had ever seen all wrapped up in her sandwich bag in her comfy incubator, She weighed 1 lb 6 Oz’s and I was totally in love but scared to death.

I also can so vividly remember Delilah’s first ever nurse in reading coming over to us from the main desk in the room and asking me how to spell Delilah’s name (I could vaguely overhear a few people discussing whether it was with or without a H on the end) And this nurse being really happy that she had guessed right. I also remember the Ambulance coming to collect her and one of the paramedic’s was called Reg which is my granddads name and I felt like that was a sign he was looking over her (My granddad sadly passed away when I was 8) And paramedic Reg offered to make me and Ben a cup of tea whilst we waited which in that scary moment we knew at the very best we wouldn’t be seeing our daughter for a few hours was the sweetest thing anyone has ever done.

So at almost 12 PM Delilah left for her trip to Oxford, Ben and I had to go back to the ward and wait for me to be transferred too. It was the longest wait of our lives and they nearly didn’t want to move me but thankfully a lovely but slightly cross Irish Midwife fought my case for me and we where finally on our way to our baby girl at 8 pm that night. albeit with two very grumpy paramedic’s that lets just say weren’t very happy because it was nearly the end of their shift. Even so once I was booked in at Oxford I couldn’t wait to go and see my baby but I was also terrified of what I was going to find what if something had happened to her but they just didn’t want to tell me over the phone? What if she had forgotten me in those eight hours or what if she thought I had abandoned her, so many thing’s where running around my head.

But as we walked into Acorn my heart felt like it was going to burst as Delilah’s new nurse explained how she had been and what each machine, button, number and beep meant. And she finished with the sentence and don’t panic unless you see us panic and those words stayed in my head for the rest of our Nicu stay. They helped me (kind of) keep it together when to begin with I could quite easily have dropped every time I heard a beep.

The next moment that really stands out to me even today is the next morning at doctors round was one of the consultants telling us to just focus on that moment don’t even look a second into the future because everything can change in that second. I don’t think any parent could forget those words and I know all too well how quickly things can change, I’ve seen it too many times.

From this point onwards nothing is going to be in order because it has just turned into one massive blur.

At five days old I got to have my first cuddle with my little girl and I had heard of so many parents not being able to hold their baby for months so I never actually considered being able to hold her (which I know might sound a bit silly) until one day when we walked in and her nurse smiled and said do you want a cuddle today? Yes, yes I did but I was so scared that I would do something wrong. But luckily even though I was told she might only manage five minutes she kept all of her sats up for a whole hour and that was the best hour of my life. Ben bless him wasn’t quite as lucky and had to wait two weeks for his first cuddle and then she decided to keep him on his toes and set off all of her alarms meaning he then waited until she was a month old when I had to kind of trick him when he came in from work one day and the nurse and I just said oh sit down and the next thing he knew wires where being tapped up and she was safely snuggled on his chest (that’s the picture above) And doesn’t it just make the best picture ever!

I can’t remember how old she was when the boy’s (my step-son’s Josh and Jake) came to met her for the first time maybe four or five days, and Ben had gone back to Reading to get them but whilst he was gone Delilah’s longline needed changing something that I think normally takes about half an hour only they couldn’t get it in and a couple of hours later when Ben and the boys got there it still wasn’t done but thankfully they let them pop in and see her although it was basically just a peek at her. then a few days later we tried again and thankfully it went perfectly and her nurse that day took this lovely picture of us all, I was so pleased because I really thought we would never get to have a picture of us all together.

I did worry about how the Boy’s would feel seeing her because I knew how scary a situation it was but they where utterly brilliant and Josh straight away wanted to hold her (he had to wait a couple more months) but I could see how worried Jake was (even though he of course doesn’t like to show it) but they both loved their sister to bits and that just make’s my heart happy (and today Delilah has them both wrapped around her still quite tiny fingers haha)

there where awful moments when you watched parents lose their little ones that had been doing so great just a few moments before. That was the scariest and most heart breaking thing of all, you realised then just how much the whole thing was out of your control. One night when Ben was on a night shift I went to walk over to the hospital from the room we where staying in and one of the other mum’s walked with me (I was quite excited because this was one of the first mum’s that I had really spoken too) and we chatted about our little ones and she showed me a shortcut to the hospital. It was good to hear her experience because she had been there a lot longer then us. And then a few hours later I met ben from the bus and we went to see Lilah together but straight away something was wrong the partner of the woman I walked in with earlier walked past us in tears.

The next morning we found out they had lost their baby. I didn’t dare look away from Lilah that day I was heartbroken for those parents and again I know this may sound silly but I also wondered if it was anything to do with me (as I said this was the first mum I had really spoken too) what if I had bought them bad luck or something. it’s odd how your mind works in that situation and then a few days later another baby lost its life and again one that had been there so much longer then Delilah and I panicked. As sad as I was for these parents and really I was no words can explain it, my head was also screaming at me that bad things happen in threes. And what if we were next? What if we lost Delilah. I think all of this has also made me love her even more then I thought possible and I never take her for granted. there also isn’t a day that I don’t think about those beautiful babies.

One morning I had just woken up and ben was on a early shift at work, when my phone rang, it was one of the doctors who told me they where just going to do a lumbar puncture to rule out her having meningitis. My head started to spin, I can’t even remember the reason they thought she might have it all I can remember is throwing my clothes on and running over to the hospital as fast as I possibly could whilst phoning Ben to let him know what was going on.

By the time I reached the hospital not even ten minutes later I actually thought I was just going to pass out. and I can see myself now just saying to her nurse that morning Is she okay? How is she? Is she okay about ten times.

And this lovely Irish nurse just started chatting and saying how big she had gotten and telling me how lovely she was (Delilah hadn’t had this nurse in about two weeks so she had changed a lot) but my heart was hammering and I managed to mumble something about Meningitis and a Lumbar puncture only to have this nurse smile and go oh its fine she hasn’t as calm as anything it’s just a precaution and although of course I was still very worried, that nurse set my world straight again and I somehow didn’t panic that by the time Ben got there a couple of hours later he was in a state of panic just like I had been and looked at me like I had lost the plot when I said everything was fine.

There was a very lot of high fives and two very relived parents that night at doctors round as her tests came back negative.

As you can probably tell a hell of a lot happened in those nine weeks and this is only a few our day’s where like a rollercoaster one second you where happy that she had gained five grams and the next wondering if she would be here in the morning.

I feel like I have rambled on enough for one post so I shall explain more another day but for now,

Thanks for reading.

Love Benita x

Goodbye Oxford (kind of)

Hello lovelies,

Today was very random and I was actually going to write a post all about my goal’s for 2018 but then Ben and I decided to go for a little trip back to Oxford.

Although Delilah was born in Reading because she was so premature (she was born at 24+1 weeks) she was very quickly rushed to The John Radcliffe Hospital at only a few hours old because they can deal with tiny babies and she stayed there for just over nine weeks (when she was transferred back to Reading for a further three months) but in those nine weeks our whole live’s changed and I for one became a entirely different person.

It was a time where doctors and nurses told us not even to look a minute into the future because no one knew if Delilah would live that long, and although that feels really weird to write now its strange how fast you adjust to that life (as I’m sure any parent that has been on a Nicu or Scbu will tell you) You learn to deal with it and you learn to find a way to cope.

One of my biggest memories from being at oxford was when Delilah was about four or five weeks old, it was the evening doctors round and Ben and I where sat there listening to one of the Doctors say about what a good day she was having and literally as he was half way through saying that sentence Delilah’s Sats all dropped and she stopped breathing cue my heart stopping for those few seconds but the thing was she done this all the time and all those doctors and nurses quickly worked to get her back which thankfully worked and she was fine. But why that memory stays in my head was everyone’s reaction to it, everyone laughed and said how that was just like her to make herself known as the doctor was saying what a good day she had, had. She knew how to keep us all on our toes but also by them smiling and laughing in that moment it kept two parents that could have easily burst into tears calm and able to laugh too that our daughter was such a little character.

But as well as spending so much time with Delilah on Acorn (one of the ward names) it was also spending so much time in the hallways waiting for news, it was me waiting in the café at near one in the morning waiting for Ben to get back from his nightshift so that he could see her for the first time since early that morning. It was having a chat with the receptionist every morning when I went in and she would ask how Delilah was doing and actually made me feel like a mother when I was trying not to look at all the other mums and dads walking past me with there little babies in their car seats all ready to take home.

And it was the amazing charity SSNAP that made it possible for us to stay in a house (the one in the picture) a few minutes walk away from the hospital the entire time Delilah was there. It was the walk to and from that house multiple times a day so that I could pump or just walking around to clear our heads sometimes .

Oxford is all of these things to me and I feel like it is a massive part of who I am today. So going back today with our two beautiful daughters and showing Delilah all the parts of our lives there that she never got to see was lovely and as we entered the carpark I looked up at the building and felt my head spin with all of our memories there, good and bad and I was nervous because although I did end up being admitted there for awhile when I was pregnant with Arabella (because they thought she was going to be super early too) It was the first time we have been brave enough to take Delilah back there since she was a patient. It was weird walking along the corridors being able to look at her beautiful face and we are so lucky to have her. There where so many times when I thought we would never be able to do that.

And so going back and saying a little hello to a few nurses felt like a weight lifted. I felt like I was saying goodbye to that time In our lives and now its the start of a whole new chapter for us.

I know there may be times when we have to go back to the JR for appointments but I felt like Delilah, Ben and I all got to say a proper goodbye to Acorn and Blossom (fun little fact the reason we chose Blossom as a middle name was because it was apart of our story starting out as being Delilah’s parents)

Sorry if this was all a bit of a ramble but I do hope you enjoyed reading and I shall see you next time but for now,

Thanks for reading.

Love Benita x