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Abbigail's NICU Journey | The Baby That Made Medical Books | NICU Awareness Month

(Title Image incorporating Abbigail in incubator on breathbre support)

You may hear of miracle babies in the news all the time, but this is the story of my miracle baby girl, who in two days time starts Primary School! Gosh, where has the time gone?!

The photo above is actually Abbigail's first photo, taken by her wonderful NICU nurse the day she was born. Knowing I'd need to take strength from photographs, as I faught a different fight in ICU across the other side of the hospital.

Let's backtrack to the day of the elective c-section.

I hardly slept the night before, my bag was packed weeks prior just incase I had complications and went into premature delivery before the scheduled c-section date. Dr's wanted me to get as close to 35 weeks as possible, as that would be safest for baby developmentally. The main concern was making sure her lungs had the best chance to develop prior to birth. I had steroids injections days prior to delivery to give her lungs that extra boost in hopes she wouldn't need intubated (like most premature babies need). It really was a team effort that got us to 34 weeks gestation. My Neuromuscular specialist was in frequent contact with my Obstetrician, I'd been given BiPAP support from 28 weeks as it was feared as baby grew, my weakened lungs would struggle to get enough oxygen around not just My body but baby's too. Plus the extra weight of baby and how petite and underweight I was, it was definitely nerve wracking. They didn't want me going into labour naturally because with having Muscular Dystrophy and to my severity. It would of been an emergency situation to try and stop the contractions (as we needed baby to stay in as long as possible for Her sake) and for my sake preventing a situation where my dedicated team of doctors might not be all available at that time and things anesthetic wise wouldn't be ready. With my type of MD I have the potential of a fatal reaction to general anesthetic (which was my only option with my c-sections due to my spinal rods - please see my Pregnancy & Childbirth Q & A post if you want more details). The triggering agent in the anesthetic has to be left to filter out over a matter of days. So yes a very anxious time. We were all literally breathing a sigh of relief everyday that I didn't go into labour. Checking off how many days until the big day.

(IMAGE: 2012 calendar with 28th Sept circled)

That day finally came on 28th September 2012. I was scheduled to be taken down to theatre at 8. They actually didn't come prep me until 8am and the delivery was pushed back just out of precaution. They wanted to triple check everything was in order. A team of 8 medical professionals were needed in theatre which included my OB, 2 other surgeons, a NICU specialist, NICU nurse, my nurse, a respiratory specialist in MD and 2 anesthesiologists. I feel so incredibly lucky that everything was so structured, thought out and they even had extra people there such as the respiratory specialist and anesthesiologists because they anticipated certain MD related complications and were ready to tackle them to give me and baby the best possible care.

9am rolled by and I was gowned up ready to go, my nurse told me they were just tweeking the anesthetic a bit more to triple check all the triggering agent was gone. In that time watching the clock in my room on the Labour and Delivery floor. A young Dr knocked gently and came in with some paperwork. He asked if we could have a chat and pulled up a chair. I wasn't prepared for what he was about to ask me. Yes, I knew that my circumstances were very unique. The amount of organisation it's taken to get to this point safely etc. When he said,

(IMAGE: Cloud bubble which reads; "Because your situation is so unique. We'd like your permission to share your medical file in future textbooks on your pregnancy and child birth with your specific diagnosis.")

I was overwhelmed. To think that me and my little one could give hope to others with my condition was such a good feeling. I'm a big believer in a diagnosis shouldn't define or limit you. Where there is a will, there's a way and thanks to this amazing medical team at St Mary's Hospital, Manchester I knew in my heart we were in safe hands. He went on to tell me there's no documented case of a woman with my severity of Multiminicore Myopathy successfully making it through pregnancy. Most chose not to have children, or if they do they miscarry or experience respiratory failure trying to get baby to term and sadly both pass. The only success stories in medical literature are of women with much milder forms, still ambulant, no respiratory or cardiac involvement and some of these milder cases even gave birth naturally. Hearing this really made me realise, if by this time the next day both baby and I had made it through. Abbie really would be a medical miracle. My miracle.

(IMAGE: Quote which reads; "There's no foot too small that it can't leave an an imprint on this world...")

Abbigail was born at 10am exactly weighing a tiny 4lb 8oz. She was small but mighty and apparently let out a big cry after she was resuscitated. Unfortunately they think the general anesthetic transferred through the umbilical cord to her and made her so sleepy, she needed a bit of help to breath. As NICU were already present with an incubator ready to whisk her away to give Abbigail the medical care she needed, it all went smoothly.

They did a barrage of tests on her to check for infections or anything that she might of picked up in the womb. This was protocol as in theatre as they were removing the placenta they noted it had a "rugged" texture. Not normal by far. They weren't sure what happened there and it could only be assumed that my muscle wasting disease may have caused issues with the womb and lining. So they were concerned by looking at the placenta, that Abbigail may not of been getting everything she needed nutrition wise. She was quite small still for a 34 weeker. Dr's were expecting more of a 6lb baby. Fortunately everything came back clear so they took her off precautionary IV antibiotics that was covering all bases.

(IMAGE: Tiny Abbie wrapped up, IV visible)

Due to her prematurity she was tube fed for the first two weeks of her life and she needed breathing support via a CPAP machine for the same amount. She was experiencing some withdrawal from the anesthetic and some medications I had to stay on during pregnancy. They had some methadone on standby, should she become too distressed. That then could be tapered down slowly. Again thankfully she didn't need it and her symptoms disappeared all together within the first few days with just paracetamol to make her comfortable.

I didn't get to meet my baby girl until she was 4 days old due to me needing tapering off the ventilator in ICU and other MD related complications. NICU staff were amazingly supportive. When I couldn't visit her, I would use the ward phone to call NICU and speak to her nurse each day for updates. They made me feel closer to her when I was so hormonal and upset that I couldn't have my baby with me. They kept taking pictures and made me feel as involved as possible from across the hospital. They'd respect my wishes eg. asking me what brand of baby formula was OK to give her or if expressing milk was an option (sadly it wasn't due to my medications), to ringing to ask me if it was OK they put one of their nappies on her as the ones I'd packed for her were obviously too big for her 4lb little body.

(IMAGE: My 1st holding Abbigail in NICU. Sat in my powerchair, Abbie wrapped up in my arms hooked upto several monitors)

When I managed to get to NICU on day 4, I was met with a round of applause and I went bright red. Her nurse immediately approached me and started moving the cot side chairs away from one side of the incubator so I could drive in and be as close as possible. I passed many babies who looked so so tiny, intubated and under phototherapy, wires everywhere. Doting parents by their sides. It was a very emotional experience being in NICU. Abbigail's nurse that day was a senior nurse, she gave me an update on how she was feeding, sleeping, any issues etc. Then she asked me if I wanted to hold her.

This was the first time up in my powerchair since the c-section so I was in a lot of pain. I eagerly said yes though I did worry I wouldn't be able to hold her comfortably for long. I asked the nurse for a pillow for my lap and she pulled down the side of the incubator, bundled Abbigail in a receiving blanket and propped her in my arms.

I was so overwhelmed with love for her. I was so afraid of having an issue bonding with her due to how long I'd been without her. But all that worry melted away instantly. I kept thinking to myself.Is she really mine? I get to Keep her? I know it sounds silly but when you're a first time parent it's such a huge change, suddenly you're responsible for this little life. They come first now.

Thereafter I made it to visit Abbie once, then twice, then three times a day working up slowly my tolerance in my powerchair. I fed her for the first time in NICU at two weeks old out the tiniest bottle you'd ever seen! She did spew most of it up, but her tummy got used to it as time went on. The nurses knew me by name now, I got to know other parents and their stories. Equally as incredible journeys. The youngest baby in NICU when we were there was a 21 weeker. He was very unstable and had alot going on. His mother never left his side, I still wonder now if he made it. Is he starting primary this year to? Sad as it is, the reality of NICU life is some babies are born too soon, too sick and never make it home. Despite Dr's and nurses best efforts, they were too sick to stay....

The nurses go beyond the level of medical care by doing such things as making ink foot and hand print keepsakes, if your baby is in NICU over Christmas they'll do parents a special card from baby. They spend their breaks drinking coffee and printing off photos and craft bits to make things that little bit more special during such a difficult time. Many babies are in there for months on end after all. They comfort your baby when they encourage you to go to the parents quarters to get some rest. The babies in their care are treated with such love and dignity it's truly commendable.

Abbigail graduated to SCBU (Special Care Baby Unit) a month after she was born, then two weeks later she was stable and gaining enough weight to be moved to our local hospital at the Royal Bolton. I did shed a tear when we left their care, gave them all a hug, card and flowers but no words or gifts could truly express my sincere gratitude for the care they gave Abbie and all the other babies. I fretted that Royal Boltons SCBU might not be anything like this. Unfortunately Royal Bolton was severely understaffed and I had to make some complaints as many a time I'd arrive in the morning to Abbigail crying to be fed or changed and it was like they were immune to babies crying and they'd get to her at some point. I tried to stay as much as possible to do Abbie's cares and just leave the nurses to do the medical side until she was eventually allowed home another month later. Baby has to weigh 5lb and pass a car seat breathing test before allowed home at Bolton, with Ava we had a very different experience as she never got transferred.

(IMAGE: Abbigail doing her car seat SATS test, wearing a tiny baby sized snow suit that still drowned her)

I couldn't ask for a better NICU experience and nurses while Abbigail was under their care. There are no words that describe how passionate and dedicated they are to their job, which is so rare to find now days. Any NICU parent will tell you similar, I don't think you can truly appreciate the outstanding care provided by NICU nurses unless you've had a baby that needed intensive care. We are truly blessed to have such incredible people looking after our children.

That brings me to the end of this post. I hope it's done NICU Awareness Month justice! Look out for Ava's NICU Journey in the following weeks...

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If you've been touched by Abbigail's Journey, please take a moment to look into these amazing charities. Particularly a charity close to my heart called "Heavenly Gowns for Angel Babies" , they take people's old wedding/bridemaid/christening gowns (which otherwise collect dust hanging in people's wardrobes) etc and make handmade, tailored gowns for the baby's who sadly pass away.

Some other amazing UK based charities are;

BLISS UK ~ Providing support and information for premature babies
Rainbow Children's Trust ~ They provide emotional and practical support to parents of babies in NICU and ongoing support after


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