The Never Ending Rollercoaster

imageThere are so many things you think you know as a NICU parent but it seems to be a never ending Rollercoaster of learning.

My first born, Orlando arrived at 35 weeks and suffered with constant respiratory problems. In his first year he had around six hospital admissions. I thought they would never end. He is now eight and although healthy, whenever he gets sick he usually gets slammed with an asthma attack sometime in the year. Summer is our worst.

When Lucia arrived at 27 weeks I was ready and prepared for the onslaught. Right before being born she was in heart failure from the Twin to Twin transfusion and had Polyhydraminos (too much amniotic fluid around her). At birth she was polycythemic (meaning too many red blood cells – this is the opposite to anaemia).

She was intubated for around two weeks which is quite a long time. They prefer no intubation after a few days, this is the main cause of her chronic lung disease because of damage from the tubes to her very fragile respiratory system.

She had a PDA (this is where the main heart muscle should close immediately after birth). Lucia’s didn’t and it was huge. It took close to four months before it totally closed. We were lucky to escape surgery.

She had a very distinct worrying heart murmur. By six months this rectified but she is left with a mild murmur that shows itself when she is unwell.

She had recovering stage one retinopathy. This is an eye condition in premature babies which can cause abnormal blood vessel growth of the eyes. It can cause total retina detachment and quickly. Again we escaped surgery.

She had a very immature brain stem, this is totally normal in premature babies and is why they are given caffeine. Lucia just took her time to teach her brain to teach her body to keep breathing. The amount of times she had apneas and went blue in my arms are countless.

She had and still has damage to her intestines which cause her stomach to become severely distended. It is believed this occurred during the acute Twin to Twin Transfusion.

She required oxygen until eleven weeks old. Patience is a virtue with a premature baby as they only learn to do things when they’re ready and not before.

She had countless long lines, PICC lines, TPN lines, NGT’s, blood tests and numerous blood transfusions. A whole lot of words I’d prefer not to know about.

This was her first twelve weeks of life.

I was so worried about her coming home and being exposed to germs and after Orlando was so sick in his first year I expected even worse from Lucia. Instead we were pleasantly surprised because we wrapped our little family in a cocoon and hid ourselves for her first year and slowly integrated in her second year. During that time she had three hospital admissions, all respiratory related.

There is quite a misconception that when a premature baby comes home all is fine. The baby is fine, the family is fine and life returns to normal. This is very WRONG.

Lucia is now three years old and we cannot count how many times she has been to physiotherapy, hydrotherapy, occupational therapy, the neonatologist, the respiratory paediatrician, the eye specialist, the cardiologist, the rheumatologist, the hospitals developmental checks. For X-rays, blood tests, ultrasounds, head scans. Our GP became our closest friend because when these little people get sick, they get really sick and quickly.

My anxiety levels were on high alert if we came in contact with a friend or play mate whose child ‘just has a runny nose’. When a parent at school told me they don’t believe in immunisation. That runny nose could be carrying RSV which could kill my premmie baby. Lack of immunisation is exposing my immune suppressed baby to life threatening diseases that were eradicated! Life is still not normal.

When Lucia turned three in November I remember saying to my husband that I felt like we could now lift our heads and take a deep breath. Albeit, a premmie always has a little surprise in store for unsuspecting parents.

For quite some time Lucia has had a persistent ailment. For months we have been back and forth to specialists ruling out this and that. Last week we were told that our little person likely had a mild brain injury at birth from her traumatic start in life and new things are coming to light.

On the outside she looks like any other three year old (except much smaller) but now we are on a new Rollercoaster of ruling out the what ifs. These what ifs were always a possibility but we thought we were past them. I am not worried just a little emotional that my precious girl has already been through enough and now she has to endure more. But she is Super Chi Chi!

If I have learnt nothing more from this exhausting and enlightening journey it is this:

She may have needed months of oxygen And have lungs that aren’t as strong as yours – but I’m forever happy that she can breathe on her own;

She may have turned me into a crazy germ phobic – but I’m forever happy that as much as possible I can limit her exposure to infection and all my poor children understand the term ‘infection control’;

She may be the smallest three year old I’ve ever known – but I’m forever happy that she is full of feistiness and she eats;

She may rarely sleep – but I’m forever happy that when she does I can watch over her and marvel at life;

She may run around all day but be up all night with sore legs – but I’m forever happy that she can walk;

She may throw the biggest tantrums I’ve ever seen – but I’m happy she has the strength and determination to communicate her needs. Sadly for me I can’t resist her quivering lips and puppy dog eyes!

So next time someone you know has a premature baby, always remember they are on this journey for much longer than their time in hospital.

Three cheers today for all our premmie warriors and their warrior Mummy and Daddy’s who fight relentlessly for their survival and to ensure they thrive.

 

 

 

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