Blog Daisy Nelle

You’re Tube-Free Baby

When Daisy was three days old, I buzzed the neonatal team from my hospital bed, in the cubicle we were struggling in, and I asked them to take her.
We had tried for days to get her to be able to feed from a bottle. The precious drops of colostrum that I had expressed. And then more as my milk started to flow, thanks to the force of a hospital-grade pump. 
But she couldn’t feed. She couldn’t do it. Mark would leave, once the visiting times were up for partners. And I would close the curtain around me and my baby and I would sob because I was frightened with the responsibility of keeping my daughter alive. And I know I was in hospital, and she was in the best place. But she was still in my care. Nurses and midwives left me to it, in the hope that she would manage. And eventually the NICU staff started to circle closer and closer. 
She had to take 30ml every three hours or she’d be admitted. I would sit for what felt like hours trying to get her to feed from a specialist teat. And she would be so exhausted that she would fall asleep or refuse. And the yellow-tinged milk would dribble from the side of her mouth and I would wince – remembering the effort it cost me to produce it. 
She did start to take a bit more but my baby girl was growing weaker. I could see it. And I was sacred. I was sore. I was disoriented. I had barely any sleep – under no exaggeration. I had a few hours in the 72 since her arrival. And eventually, with Mark by my side, I pressed the buzzer and begged them to take my baby. 

A short half hour later, we found ourselves stood in a room with the temperature of a greenhouse on a hot day. So humid compared to the cool ward outside of the double doors. I felt my armpits prickle under my heavy jumper, worn to disguise the sagging belly I now had, and offer me some comfort. My daughter was taken from my arms and placed in a cot, and a lovely nurse (whose name I shall never forget – Anastasia) told me that she was about to pass an NG tube and warned us that Daisy would likely get upset and it wouldn’t be nice. 
And I held onto Mark’s hand and I felt dizzy and faint and sick. And I choked back tears as my baby could barely fight. Just a weak cry. 
Soon after that her saturations dipped and she began time in an incubator. If I had of known that was going to happen I would have held her tightly once last time. Because the days that followed tore me in two. And I never could imagine a day that I would heal from that pain. 
As it was, our daughter spent six weeks and one day in hospital. Not the longest time any baby has ever spent in hospital. But long enough. In fact – I don’t need to justify it do I? It was painful. We can all imagine that. 
She came home, eventually, with two tubes. A nasopharyngeal airway (NPA), and a nasogastric tube. And at that point, to have her home was enough. We couldn’t leave the house without a suction machine, catheters, spare tubes, lubricant, syringes, PH strips, hand sanitiser, and milk – oh and all the other things any baby might need. 
But she was home and it was enough. 
By her eleventh week, her NPA was out, and we had a sleep study in hospital, and we emerged with a baby with just one tube. She had done it. 
My daughter could breathe unaided. And I sobbed so hard with happy tears, because that is no small feat. She could do it on her own. She was no longer at risk. She was going to be okay. 
And then we were left with the feeding tube. And at first that was amazing. Half of her face was free to kiss and stroke and see. But tube feeding is an exhausting task. You pull the contents from what you hope is your baby’s stomach through a syringe, and you test them with PH strips to confirm that this is the case. You get a good result and you feed. Letting gravity pull the milk down through her nose and into her stomach. And you get a bad result and it’s off to hospital, no matter what the hour. Like 4:00am. We did that once. All four of us. Tried to make it an adventure for Bill but it made me feel so guilty on both of my children. 
With Bill I breastfed until 18 months. With Daisy I expressed for three and a half and I decided to stop for my sanity. With Bill I had quiet, serene moments of bonding as he fed. With Daisy I had tense, desperate moments of worry, as I fed her. 
But we persevered. Over and over. We tried different bottles. We tried different techniques. We tried to be patient. To be accepting. To understand how lucky we are. And we tried early weaning.
On Saturday morning – Saturday 17th September – Daisy pulled her tube out. And I rang the community team to explain. We were just about to go to IKEA, and I suggested they come later on to pass a new tube, as she was only being tube fed once a night by this point. But lovely Claire – a lady I will never forget – suggested we just go for it. And see what happens. But to bring her into hospital if we were worried. By the time Daisy went to bed, she had taken 23oz orally, including three big meals. 
By Sunday night, she had taken 27oz. 
And tonight, she’s already on 24.5oz, and we still have a dream feed to go.
Saturday and Sunday, we played it by ear. We knew that it could go back in at any time. 
But today, our cleft nurse range, after reading the barrage of texts I had sent her over the weekend. I knew she turned off her work phone when she wasn’t on-call, but I wanted her to know everything come Monday morning. 
She called me. And she gave her blessing. The tube could stay out. Daisy was ready. I cried in Waitrose. By the chocolate bars. In full view of anyone who cared to look. I messaged Mark. And we celebrated in the only way you can over a phone – with silly emojis and an “I love you.” 
The community team just said to call if we need them. But they didn’t think we would.
And so, today, my daughter is officially free of her last tube.
I can see the face of my daughter for hours on end. The last time I did that was in those first three days. 
How far we have come.
We may have surgery, speech therapy, hearing and sight tests, and many an assessment ahead of us. 
But I am so proud of you Daisy. You have more fight in you than I could ever imagine having myself. 
And it’s hard to believe I was just like you once upon a time. 
And I hope that gives you a comfort, little girl. 
I know that it was me that put you in this position. And passed on my struggles to you. 
But I love you so much. And I will always stick by you.
And I will do my best to spend the rest of my days making it up to you.
And you will always feel loved. I promise. 

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10 Comments

  • Reply
    Natalie LittleJamPotLife
    19th September 2016 at 9:03 pm

    Such a beautiful heart felt post. She's beautiful and was born a few days after our fourth little baby too 🙂 The pride you must feel is amazing I bet, its amazing how strong babies can be despite being so fragile. She's got a super strong Mama by her side too so she's one lucky little girl xxx

  • Reply
    Emma Lambert
    19th September 2016 at 9:05 pm

    So beautifully written, as always. This is such amazing news! Daisy is absolutely gorgeous xxx

  • Reply
    Alison Perry
    19th September 2016 at 9:19 pm

    Oh Charlotte. I'm so happy for you all. This is just brilliant. Well done Daisy! And well done to you guys for getting her this far. You're all doing so well xxx

  • Reply
    Katie @mummydaddyme
    19th September 2016 at 9:36 pm

    Well done Daisy. What a little fighter and I bet it is amazing to see that little tube free face. Well done to both of you for getting her there too- she is very lucky to have you fighting her corner. W would like to come and see her little gorgeous naked face. 😉 xx

  • Reply
    Sarah - This Mama Life
    19th September 2016 at 10:19 pm

    I am so so so so so beyond happy for you all! She's beautiful with or without a tube but my goodness those photos are simply stunning 🙂 Sending lots of happy love to you all!xx

  • Reply
    Laura-Hyde
    20th September 2016 at 10:24 am

    Such wonderful news; I'm beyond happy for you and your family, Charlotte 🙂 xx

  • Reply
    gill_crawshaw
    21st September 2016 at 11:18 am

    Oh your beautiful girl Charlotte, so pleased for you all, in tears xx

  • Reply
    slither.io
    23rd September 2016 at 9:23 am

    Such wonderful news; I'm beyond happy for you and your family, Charlotte 🙂 xx

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  • Reply
    Danielle A
    26th September 2016 at 10:21 am

    She is so cute! So glad she is off the tubes 🙂

  • Reply
    Lois Goodman
    13th October 2016 at 6:51 am

    This story really struck a chord with me. Our third child was born with a few issues and couldn't latch, such or swallow properly. She's just left hospital after being in the first 5 weeks of her life with an ng tube and we are still in the thick of it! Your story gave me hope that one day soon hopefully she will be tube free. This is the most distressing and difficult experience of my life but its comforting to know there are others who have been through the same and come out the other end. Thank you x

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