On Saturday 26th May 2018 I attended a surprise birthday meal with extended family for my nephews 16th. They choose to book a very posh I...
Ava's NICU Journey | A Surprise Delivery! | NICU Awareness Month
(Pictured: Scrapbook style title image featuring a newborn photo of Ava, sleeping in a pink knit hat attached to an ECG monitor)
Ava Harriet was born on 24th September 2015, weighing a tiny 4lb 10oz. Just like her big sister Abbigail, Ava was born by elective c-section via general anesthesia, planned months in advance in a very controlled setting due to complications surrounding my muscle wasting disease. To understand more about this please visit my Pregnancy & Childbirth post for more details.
Although I got given a different team of specialists with it being 3 years on from my first pregnancy, everything as far as the birth plan was exactly the same as it was with my first. If it's not broken why fix it right? The only differences is that they cut corners, e.g no point doing an ultrasound on my back to see if an epidural was possible this time, because obviously I still had rods. Please visit Abbigail's NICU Journey if you haven't already done so, it'll give you the run down of the birth plan someone in my position faces, just so I'm not repeating myself too much in these posts!
(Pictured: A mother and daughter with the quote; "One of the greatest gifts I've ever received is my daughter")
It was an amazing surprise when I finally got the date for the c-section and it being completely by coincidence, booked on my 27th birthday! I was really blown away by that, almost like it was meant to be. Yes I'm well aware realistically it just so happened that every tom, dick and harry that were needed in theatre to pull this off (for a second time), were all free on that specific date. I just couldn't help but feel blessed. I'll forever share a birthday with one of my children, what better gift for a mother than to have a child. My birthday from 2015 became a day of appreciation for the medical teams that have made me a mother, for without them I wouldn't be.
(Pictured: Ava, just born before they whisked her to NICU. She's wearing a pink knit preemie hat and has ECG stickers on)
On 24th September 2015 at 10:46am after a traumatic birth, Ava made it safely into the world thanks to the outstanding medical team that supported my journey to motherhood. At 4lb 10oz, weighing 2 more pounds than her big sister did at the same gestation, 34 weeks she came out fighting. It seemed the steroid injections to boost her premature lungs (which I had been given for both my girls) was all that was needed as Ava never required breathing support, as you can see from her first ever photo above.
Unfortunately as they whisked Ava off to NICU for tests and other prematurity related complications as expected, I was hemorrhaging. This is something they weren't prepared for. They'd removed the placenta and my uterus just wasn't contracting as it should right after child birth. They administered 12 clotting injections into my thighs, all the while I was blissfully unaware under general. Running out of options and losing 5 pints of blood, they put me on bypass to try and buy them time by filtering some back into me. But I was bleeding out everywhere, blood pressure dropping and things were critical. The surgeon sent a nurse out to the waiting room with a consent form for my partner to give permission for them to do a complete hysterectomy if they couldn't stop the bleeding. Of course he signed it. By some miracle in the meantime, 16 clotting injections and internal packing later - the bleeding was stemming. I was sown up and taken to ICU as planned to be gradually weaned from the ventilator onto my BIPAP (just like last time), but now I was given 5 blood transfusions, IV iron replacement and was very very sick.
On day 3 when I was starting to feel more human again, after all I was severely anemic..the surgeon came and explained to me what happened. She didn't want to tell me when I first came round after the operation, but she really drilled home that I was so incredibly lucky. I was literally a hair away from having a full hysterectomy and that would of been hell to recovery from, on top of coming to terms with no more children.
While my c-section recovery was more difficult, NICU staff didn't fail to touch my heart and keep my baby close from afar. When I awoke from anesthesia, very sick and critical... This card was on the hospital table... I was so overwhelmed I cried happy tears!...
(Pictured: A pink handmade card, with Ava's first picture glued on the front, above it reads in cut out writing "HAPPY BIRTHDAY MUMMY)
Her amazing nurse had gone out her way to make me a card, spent time gluing bits together and put just what I needed to hear inside, "Happy Birthday Mummy! Don't worry, I'm a fighter and I'm holding my own. Look, no breathing tube! I was 4lb 10oz and settling in well with my friends in the NICU. Get better soon Mummy, I can't wait for my first cuddle - Ava xxxx" I looked at this card, held it close and used it as my clutch to push on when my body seemed to want to throw every spanner in the works.
By day 4 I still hadn't been well enough to get up in my powerchair, like I had last time. Protocol still prevented me from being wheeled in my bed to NICU or Ava to be wheeled to me, even if it was just 5 minutes to meet my new daughter. Although I was off the vent, I had an unknown infection that they were struggling to control and I was vomiting black contents of unknown origin. I was upset noticeably and that's when the ward senior sister proved that human kindness can bring about the most amazing things. She and a porter were braking hospital protocol at 10pm by busting me out of ICU! They pushed me in my bed to see Ava in NICU, and I finally got her hold her for a whole blissful 10 minutes until I needed to go back. Everyone in NICU was so excited for us, that we made it. I was so so grateful beyond measure. There are NO words. She put her job on the line so I could meet my baby girl, nobody was going to tell of course! And you've probably guessed it.. This ward sister was a mother of 3 ❤️
After 3 weeks on the ward, I was discharged on iron supplements and to recover at home. Only I wasn't going home. My partner and Abbigail (who was then 3 years old) were given special permission to stay in the Ronald McDonald House next to Manchester Children's Hospital until Ava got discharged, so I moved in there too!
Our Stay At The Ronald McDonald House in Manchester
(Pictured: Abbigail playing with a ball in the big communal garden at the Ronald McDonald House, Manchester)
Being able to stay next to the hospital, cutting out an up to 2hr commute via buses and trains with me recovering from surgery and having our eldest with us was just a tremendous weight off all of our shoulders. It meant we could visit Ava as much as we liked, we could take turns watching Abbigail in the play area, while the other got much needed bonding time with Ava while she slowly learnt to tolerate formula via a bottle rather than her NG tube. The Ronald McDonald House provided each family with their own room (with pull out beds for parents other children), bathroom, individual kitchen areas in a communal dining area. Lots of lounge type rooms for families to try and keep as much normality as possible, while having a sick child in hospital just across the road. It is truly such a God send! It's so important to keep families together where possible and this home away from home makes that possible. One particular morning when we were called into NICU in a rush as Ava was having unexplained tremors and needed a brain scan, they had volunteers in and they watched Abbigail for us, fed her waffles for breakfast and supervised her playing in the big garden until we had come back from Ava's scan. It helped immensely to have that support, as our families weren't near the hospital.
Bumps In The Road
(Pictured: Ava in her incubator, NG tube visable, wearing a donated peach knitted matching hat and cardigan sleeping)
Along with the gradual transition from NG tube feeds to trying to get Ava feeding well enough by bottle to be transferred to our local hospital in the lower level (SCBU - Special Care Baby Unit), Ava had some unexplained complications. Amongst them were persistent jaundice which required phototherapy, full body tremors, reflux and a concerning racing high rate when getting upset. It was a very worrying time as she was put through a number of tests to see if she'd suffered some brain damage from the traumatic birth that could account for the tremors. Thankfully CT scans ruled out any Neurological condition. The reflux was common amongst preemies and as long as Ava wasn't left to get too worked up, we could keep her heart rate down. She did undergo several Echos and ECGs to rule out a hole in the heart, which is also seen a lot in premature babies. Again God must of been watching over her because her heart was completely healthy! The unexplained tremors subsided after a month and they dismissed the high heart rate as just a quirk of hers rather than a medical issue.
Discharge Drama and Coming Home!
After a month in St Mary's NICU, they wanted her transferred to the Royal Bolton Hospital near us so we could go home and Ava would continue to up her bottle feeds until she could fully sustain herself without a feeding tube. They tried to get her a bed in SCBU at Bolton, but despite them ringing everyday for a week. No bed became available. There must of been a lot of babies born in Bolton that week! Ava was discharged after 5 weeks from St Mary's SCBU instead.
This brings me to the end of Ava's journey into the world. Thank you for coming by to read and hearing first time the amazing job Neonatal Intensive Care Units, Dr's and nurses do the countries smallest and sickest babies. I'll wrap this post up with a collage of some precious coming home photos with little miss Ava Harriet...
(Pictured: Collage includes a photo of me bottle feeding Ava in NICU, Ava in her car seat ready to come home, first at home picture of big sister Abbigail holding Ava and Ava in a striped hoodie curled up asleep on me)__
If you've been touched by this story, please take a moment to see if you could help some of the incredible charities mentioned in Ava's NICU Journey such as the Ronald McDonald House, Manchester, BLISS UK a charity dedicated to supporting families with premature babies or a charity very close to my heart - Angel Gowns for Angel Babies, they turn donated wedding/bridesmaid dresses and christening gowns (that would otherwise collect dust in your wardrobe) into beautifully unique and tailored gowns for the babies that sadly never make it home or pass away from things like SIDS.
at September 10, 2017
Labels: 34 weeker, Bliss UK, disability, disabled mum, Heavenly Gowns for Angel Babies, miracle babies, mothers and daughter share a birthday, mum with muscular dystrophy, NICU Awareness Month, NICU nurses, nurse appreciation, preemies, premature babies, prematurity complications, Ronald Mcdonald House charities, St Marys Hospital Manchester
Location: Manchester, England, United Kingdom
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