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THE STORY OF MILLIE AND ME

 

ABOUT THE BLOG

After lots of back and forth, I have finally decided to create a blog of Millie's story. When we first started on this adventure a few people told me to start one, but I couldn't bring myself to do it. I did however, take huge comfort in keeping a diary for our daughter, during her time on NICU. In my last diary entry to her I congratulated her on her discharge. Our little fighter had spent 12 days in intensive care, 50 days in high dependency and 18 days in special care - A total of 80 days in hospital. 

She was given 40 different drugs whilst on the unit, and was extremely close to not making it at all. Naively, we thought that was the end of our premature baby roller coaster. We soon found out, however, that even though you've made that last entry, closed the diary and finally left as a family of 3 through the NICU doors you tirelessly walked through every day - The roller coaster doesn't end there...

This is Millie's story

 
 
 
 

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The cold

I've been putting off writing this post.. It will definitely be the hardest one I have written so far, but lets give it a go.


Since moving onto CPAP, Millie had been doing really well. Everything was perfect, she was heading in the right direction & requiring less breathing support - we were on a massive high. It was lovely because it meant we could have cuddles when ever we wanted and since Christmas eve, we had made sure Millie had a cuddle with us every day. Christmas had been an incredible time for us as a family, Millie had been absolutely spoilt by all of our friends and family, and she had lots of visitors - Some she was meeting for the very first time and some seasoned regulars!! We were so happy for her, it was like nothing could stand in her way anymore.


But it could..


When ever I would get a call from an unknown number, my heart would start pounding. It had only happened to us once before, when we were driving home from the hospital one evening. As soon as we saw the number my husband swung the car around and started heading back! luckily, they just needed some information from me. However, when you get the call at 2am you know its not just a request for some information...


Millie had been struggling with her oxygen requirements, and in the early hours of the morning it had got to the point where they couldn't support her on the CPAP machine any more. She had to go back on the ventilator, and was again classified as critical. We rushed over to the hospital as soon as we got the call. Our poor little girl, who was doing so so well, had gone backwards - They suspected she had caught a cold.


You can imagine how I felt, having had a cold not even a week before this happened. I had given her the cold, it was my fault she had gone backwards and could no longer breath. I'm such an awful mum, how could I let this happen?? I was inconsolable. To go from being on such a high, to such a low made it harder to deal with. Yes, Millie had been sicker before, but she had never actually made progress, and gone backwards so dramatically. This is what everyone kept saying to us about it being a rollercoaster. The problem is, when you don't get many highs you cling to them more when they do happen, which make the downs that much harder to deal with.


Her cold was horrendous. She didn't have the energy to clear her nose herself so the nurses had to use suction. I hated it when they suctioned her - It is a form of trauma and can cause them to bleed internally. When she had her bleed on the lungs they would suction, and huge clumps of blood would come out of her mouth. We were constantly asking, is it fresh blood or old blood? praying there wasn't any new trauma. Luckily, this time, it was only snot they got out. However, the nurses said they had never seen so much snot come out of a baby before.


She was put on a course of antibiotics, and hooked up to all of her pumps again. They had to take a lumbar puncture (having been through an epidural, the thought of them doing this to Millie is awful) to make sure there wasn't anything wrong with her central nervous system, and sent blood cultures off to the lab to be tested. They came back as positive for Rhinovirus - A common cold to you and me, but potentially life threatening to a premature baby. There is no medication they can give to a baby with a cold, so Millie had to fight it herself. We could see it was taking absolutely everything out of her to clear it. That feeling of helplessness had crept up on us again.. we went back to sitting by her side day and night, not eating or sleeping, full of worry.


Now that Millie was bigger, the ventilator was doing more damage, and she was really uncomfortable with the tube stuck down her windpipe. She kept trying to fight it and not letting it breath for her. So she had to be sedated again. Because of the damage it can cause, the drs were keen to take her off the ventilator as soon as they could. I remember one examination they were checking her over, and lost the ventilator tube.. Millie stopped breathing. She needed resuscitating as a team of doctors ran over. They located the lost tube, removed it and re-inserted a fresh one. Every time a new tube was put down her throat, there was a risk of trauma. This is how her first pulmonary haemorrhage was caused. I couldn't cope.. as a tried to get out of the doctors way, which was very difficult in such a tight space. I burst into tears. At this point, there wasn't much more we could take. Our poor little girl wasn't even a month old yet and had been through more than we had in 29 years!


Every day we prayed for her to be given a break. Hadn't our little girl been through enough already?! After 3 days on the ventilator, she was just about strong enough to go onto BiPAP, and slowly start to move forwards again. For our sake as much as hers, we really hoped she did..



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