Blog Daisy Nelle

A SCBU Diary

I wanted to write an update on here, mainly because I have so many lovely people behind me and I physically can’t reply to everyone, or possibly keep people updated properly. Which is something I hate.

Daisy is three weeks old tomorrow. And I can’t quite get my head around the fact that we have a three week-old daughter who has yet to feel the sun on her skin. Or breathe in fresh air that smells like grass. Or to know what home is.

I want her home so very much. I can’t stand it.

I am at that point now, where the SCBU feels like a second home to me. I walk around. I know where things are kept. I no longer feel quite so shy, intimated, or nervous.

Her feeds are 2:30am, 5:30am, 8:30am, 11:30am, 2:30pm, 5:30pm, 8:30pm, 11:30pm. I know what to do. I get her milk, measured to 76ml. I get it warming. I get her bottle from her steriliser, sat on a row with others, on top of a big unit that houses medical equipment. I get the syringe and PH strips ready. I grab a pair of size medium gloves from the dispenser on the wall and I squeeze my hands in. I get her suction tube ready, I mark where 10cm is between my thumb and finger. I turn on the suction and I carefully clear her tube. Twice. I clean it with sterile water. And get it prepared for next time. I change her nappy, I get her awake. I love her and I chat to her.

The milk warmer makes a jingle to say it’s done, and I grab her milk, wondering what day I expressed it, and what time it might have been. I fill her bottle and I smile as she gives it her best go with gusto. I squeeze the bottle, a special bottle for cleft babies, every third suckle, to help her feed. And then, after ten minutes, or when she tires, I stop, and burp her. And then I begin to give her the rest by her feeding tube. I note the PH first, to check the tube is in her stomach and not her lungs. And I feed her using a 10ml syringe, adding up how much she takes as I go, so I know how much she had in her bottle. She finishes, and I make a note on her chart of how much she took via both bottle and tube, and I smile when it’s the most she’s ever taken by mouth.

And then I hold her. And I love her. And I watch her. And I smell her head. And stroke her hair. And I sometimes close my eyes and try and blur out the sounds of machines and beeps and pretend we’re at home.

And then I’ll try and pump. Update Mark. Update my family. And I’ll hold her and love her again until it’s the next time to feed. Or until I have to go.

I have learnt so much these past few weeks. And I can hardly believe I’m doing the things I’m doing. I’ve fitted two of her airways now. And I didn’t flinch once. I can cut the tubes to size, prepare the tape that sticks it to her face. I recognise her oxygen saturation levels. And I know the cries of all the other babies on the unit.

I am used to coming in and seeing new arrivals. And I am used to coming in to see empty cots. And panicking right away too, like I did yesterday, when baby Lola was gone. And I asked: “Did she go home?” And you feel relief when the answer is yes, and nothing bad happened instead.

At home, I simply get by.

I must admit that I hate myself at the moment because I do not recognise the mother I am to my son. I can’t give him as much of myself as I used to and so I creep in every night and cry by his bedside because I don’t have the energy to be the Mama he’s used to. She’s still here, of course. But she’s tired, and scared, and stressed and preoccupied. And I want him to understand but I can’t make that happen, because I am 28 and he is three. And I can’t bridge that gap of understanding. But I try so hard. I really do.

Mark and I are doing well considering. We’ve been so affectionate and supportive of each other. But if one of us snaps and lashes out it’s always me. I don’t know what to do sometimes and I find that I am leaning on him in a different way to how he leans on me. It’s hard to prop each other up though, when you are both hurt. I look at him holding his daughter and I feel so much love. Today, the ward was empty for a little while, as the nurses were in the office and I was the only parent in, and I whispered to Daisy: “You’re here because me and your Daddy love each other. We made you and we love you so much. You’re part him, part me, and part of your big brother. Our missing puzzle piece. We were so excited to meet you. We love you so much.” And that is word-for-word. I made myself remember it.

Today I faltered and almost cried in the unit. Which is the first time that has happened since the day she was admitted. I’ve managed to swallow my tears and save them for the shower where no one can see and they merge with the fall of hot water. Even I can pretend they don’t happen in there. But our discharge meeting has been cancelled in favour of getting her to Manchester Children’s Hospital so the specialist Ear, Nose & Throat team can assess her. This needed to be done so she could go home. But I am scared because my baby is moving further away and will go by ambulance and there’s no room for us. So we must follow behind in the car. Her first time outside and it’s not to go home. She could be there overnight or longer yet. We don’t know. We know this is procedure, but I am still terrified. And desperate for it to be done and over with, and the meeting rearranged, so we can get our daughter home.

Our home is a mess. Or it feels that way. I find myself irrationally struggling with mess. I don’t like our cats anymore and I know that makes me sound terrible, but when they leave paw prints or bring a dead bird in the house, the animal mother inside me rages and thinks: “I can’t bring my baby home to this.” I am struggling to do things like put washing away. Or make meals. And so my COOK voucher from my friends this week has meant I have a break from cooking and have some lovely meals to feed my family, so we don’t just eat junk or eat late because we’re all so behind. Mark is cancelling our holiday and trying to claim on insurance so we don’t come away in debt for nothing. Bill is on the iPad because it makes him happy and I know he is safe. And I am trying my best to do some work I promised to do before I had Daisy, because it’s time, and I don’t want to break my commitments. And, to be honest, the money will help us a lot. So forgive me if normal service resumes in part. But I can’t let myself or my family down.

I’m trying to prepare our home. Get a storage unit for her feeding tubes, her syringes, her airways, the lubricant, the tape, the suction tubes. Gosh there is so much. Her nursery will look like a little unit all her own. We’re going to get our old freezer out of the garage to use for her milk as I have a lot frozen at the hospital and plan to keep building my stash in case I should ever need to give up. I’ve just realised that I’m leaking as I type and I need to hurry up and finish this because I need to heat up our food and pump before it’s done.

And then it’s time to bath Bill, read him books, assure him how loved he is. And then come down and work and pump and try and stay away from the gin, because, in all honesty, I feel like I deserve a gin every day these days!

But the point is. It’s worth it. It is.

I’m terrified. I am exhausted. I hate the smell and look of hospital. I cry every day. And I struggle every day. But I wake up, and I make her milk, and I get myself together, wearing makeup every time so the team sees me as strong and ‘together’. And I go and I try. And I do my best.

Daisy I want you home so much. I miss you more than I could ever say. I want you to wake me in the night. Be sick in my hair. Be difficult and fuss and cry and need me to hold you because I make it better. I want to struggle having two children. Turn up flustered on the nursery run, with no makeup and yesterday’s hair but the biggest smile you have ever seen because I’m finally pushing your pram and you are sleeping in front of me. And I have your brother’s hand in mine. And Mark is with us because he’s finally on paternity leave and we’re a family.

I want that so much.

I want you so much.

Oh please, please, please let next week, your fourth week, the week you turn a month, be the week that you are home.

I would beg, plead, anything, for that to be so.

“Look! Daisies, Mama! Shall I pick some? One for you, one for Mark, one for me and one for Daisy.”

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  • Reply
    Bryony Barry
    11th May 2016 at 5:18 pm

    Oh Charlotte, I am thinking of you lots and sending all the positivity I can. I was thinking of you extra hard today as G had one of her regular chest scans and consultant appointments at the hospital. Whenever I go back there it reminds me of those horrible weeks that she was in hospital as a newborn and I had to learn how to maintain tubes and understand oxygen levels and stop myself from jumping at every beep a machine made! I smiled though and realised that although it's something that our little family will live with forever it's not something that defines us everyday like it did then. It seems like a distant memory, something that happened to someone else and I am hoping and praying that feeling washes over your awesome foursome one day in the future xxxx

  • Reply
    Heather Prime
    11th May 2016 at 5:35 pm

    Oh my lord I wish with all of my heart you can have her home soon, you break my heart every time I read these and I just am in complete awe as to how strong you are, even if you don't feel it. Little bill is an absolute credit to you and you're doing amazing with daisy she is so beautiful and doing so well. You'll have her home before you know it and this will all be so so worth it. Big love my lovely, don't forget how much everyone is here for you in every single way.

    Love Heather x

  • Reply
    Debra Grant
    11th May 2016 at 6:11 pm

    A work colleague has just had a baby (well start of March) that was 13 weeks early! Still in SCUB but downgraded to the unit at our hospital (I work there), feeds are all done through a tube. She is doing so much better now.

    I'm sure your daughter will be home in now time at all.

  • Reply
    Laura CYMFT
    11th May 2016 at 6:52 pm

    Keeping everything crossed for you that Daisy will be home with you soon. Keep strong. You're doing an amazing job! x

  • Reply
    Eleanor Knowles
    11th May 2016 at 7:19 pm

    Beautifully written as always. My heart goes out to you for things you are going through, and I just want to let you know that I know what you mean about the cats – and I promise it WILL pass. I felt like this about our dog when my son was newborn, but now its back to normal and I love the dog again. I know its not much in the scale of what you have to worry about but please know, you won't feel like that about them forever. Sending a virtual hug and support. I hope you get her home after a very very short stay in Manchester. xxx

  • Reply
    11th May 2016 at 8:15 pm

    Oh Charlotte, this made me well up. You are so amazingly strong. Daisy chose you to be her mummy, Mark to be her Daddy and Bill to be her brother because she knew just how much you would love her, care for her and protect her. I'm praying for you hun and I hope she is home next week. That picture of you and her is priceless xxx

  • Reply
    Hayley Smith
    12th May 2016 at 10:21 am

    Oh Charlotte, I am desperately hoping you get to bring her home soon. I've been reading your blog for years, after everything you've been through it was lovely to see you so happy and it's awful how hard this is for all of you. I love seeing your photos of Daisy and how honestly you share everything. I think of you often and every update I see I send the best wishes I can out there. You are so compassionate and she is the luckiest little girl to have you for her mama. Keep going, you are doing amazingly well xxx

  • Reply
    Jenny Ripatti-Taylor
    12th May 2016 at 11:22 am

    Sending all the love I can virtually if you need anything Charlotte I am here hunny just down the road. I know you are hurting but you are so amazingly strong and your son knows you love him inside and out so much. He doesn't need to understand what's happening one hug and kiss from his momma is enough to tell him you are there for him and love him. Keep sharing Daisy with us we all love her so much already and we are praying for her to be home with you soon. She is getting the care she needs where she is now so focus on that and you are doing so amazing being there with her. She is one lucky lady. Hugs and kisses to you babes.

  • Reply
    12th May 2016 at 6:37 pm

    Sending lots of love and strength your way xxx

  • Reply
    Danielle A
    17th May 2016 at 4:03 pm

    Bless you, thinking of you all. The house etc can wait (or can you ask for help from others) that cook voucher sounds like a brilliant idea too. I am sure Bill is fine, a few weeks with extra time on the iPad isn't going to hurt, that comment about the Daisies shows that-too sweet. Hope she is home to you all soon and sending lots of love and strength xx

  • Reply
    Hannah Clementson
    18th May 2016 at 6:39 pm

    This made me so emotional! You are a strong mama bear and you can and will get through this. Your boy knows you love him and when you have overcome this tiredness you will be an even better because of the struggles you conquered. You have got this!! Love to you all! x

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