Thursday, June 13, 2013

A half birthday

The following list is from the Miracle Babies Foundation Facebook page. The list was compiled by parents on a US premature baby forum. I have edited it to Australianise the language, and added text in italics.

Only a NICU parent,

Would be excited about:
- increased feed volumes.
- 5 grams of weight gain.
- lower oxygen levels.
- a few centimetres in length.
- seeing their baby open their eyes for the first time, weeks after their birth.
- poopy nappies.
- graduating beds (from a humidicrib to an open cot).
- moving into the Special Care Nursery from the Intensive Care Unit.
- finding out at their 10pm goodnight call that their baby is fine, that there is nothing to report.
- going to hospital (because we got to see our babies).
- Baby CPR classes (they're getting us ready to go home).
- outgrowing clothes (or actually needing to wear them as they are in an open cot).

- the dread of walking out of those doors to go home to sleep.
- hearing your baby cry for the first time, and crying just as hard.
- the fear of seeing your baby for the first time.
- that Brady's are not referring to the Brady Bunch (a Brady,short for Bradycardia is the slowing of a babies heart rate to a [quite literally] alarming level).
- what CPAP means (Continuous positive airway pressure, the system that helped our girls breathe. Soft prongs were inserted up their nostrils or a tiny mask provided oxygen or air under a small amount of pressure. This helped keep their lungs expanded and reduced the effort required to breathe. We were lucky that neither Maggie or Elisabeth required ventilation or surfactant).
- the pain of not holding your baby for days, and then being terrified of hurting their tiny bodies when you finally can.
- the workings of a humidicrib.
- what each beep and alarm means.
- how important kangaroo cuddles are (to baby and Mum and Dad). A kangaroo cuddle is a skin to skin cuddle with your baby. They are still attached to all their tubes, sensors and breathing gear. But it helps the baby maintain a stable heart and breathing rate. It helps the Mama and Papa bond, even if it makes them cry! 
- that a parent's job is to fix whatever hurts their child, and know the pain of realising you can't.
- what a PICC line is. (A Peripherally Inserted Central Catheter. A long, flexible tube that is inserted into a peripheral vein, usually in the upper arm, and advanced until the tip terminates in a large vein in the chest near the heart to obtain intravenous access. The girls had these in their first few weeks of life to deliver Total Parenteral Nutrition - TPN - straight into their bloodstream as their stomachs and intestines weren't developed enough to absorb nutrients from my breast milk. Their PICC lines used to scare me so much in our first cuddles as I was terrified of accidentally pulling or dislodging it. I was very grateful the day they were removed).
- understands adjusted age, and counts down every day until the their due date.
- what it feels like to cry the first time you see your baby in a humidicrib. I've already written about how I wept when I saw them in my birth post a few weeks ago. I still cried most times I saw our girls for the first few weeks.
- the trepidation over announcing their birth. I waited to send cards until they were home. 
- how amazing tiny fingers feel clenched to your hand.
- the pain of hearing a woman in her third trimester complaining about her pregnancy, and wondering what that would be like. My obstetrician shared with us that as she left the hospital after delivering our girls she walked past a woman, heavily pregnant probably about to give birth, outside smoking. She told us how sad it made her feel, because she knew we would have given anything to deliver our girls full term and how careful I'd been to ensure the health of our girls.
- there are no choices in the NICU: you have to be strong. Many people have called Rob and I brave for what we endured to bring our girls home. But the way I saw it, I needed to support Maggie and Elisabeth, as they were the ones who demonstrated the true meaning of the words; strength, courage, endurance, determination, bravery and fierceness.
- cracked and bleeding hands from washing them so much and coating them constantly with hand sanitizer. The cleaning products the cleaners used also stirred up my asthma. I was so glad to walk out of that hospital and leave such an artificial environment behind. No more air conditioning, fluorescent lighting, vinyl chairs and strong smelling detergents.
- every inch of their NICU, what walls they cried against, what bed spaces they "lived" in, what shifts each Doctor, nurse, therapist and staff member worked.
- that you will be a germaphobe for at least the next two years, people will think you are weird, and you will know you are literally saving your child's life. I have already been struck by people who can not understand this, at first it hurt, but after this last week when the girls just had a little cold and how much I've watched them and worried, I won't care if I lose friends over this. I met a number of parents of premmie babies that have had to revisit hospital and even the NICU each winter as their child has battled to breathe with a respiratory illness. It will be a miracle if we don't have to revisit hospital with one or both of our girls, and I will do anything to protect them from unnecessary illnesses.
- 80 nurses by name.
- that with every day in NICU makes you one of the lucky ones. A fellow premmie mother and friend said "There are worst things in life than being born prematurely". I didn't believe her at day 4, but by day 112 we had witnessed other parents deal with much more painful sicknesses and sadder outcomes for their babies. 
- just how important each new day is and how much significance a new day holds. Our girls were born 14 weeks too early. For us our NICU ride was the ultimate waiting game. Waiting for stomachs and intestines to be able to process breast milk, waiting for the kilogram milestones, waiting for the girls to be stable enough to hold, waiting for their little lungs to mature enough to breathe unassisted, waiting for enough strength to feed on their own, waiting until they were healthy enough for us to take them home.

Yesterday Maggie and Elisabeth celebrated their 6 month birthday. In some ways it has gone so quickly, but in others it feels like years since I heard my Doctor say to me, "Marian, your body is going into labour, we need to transfer you to a hospital with a NICU." She said it calmly, but compassionately, as she pushed my wheelchair back to my room. We had just had a very scary ultrasound where we could see the mass of amniotic fluid around Elisabeth and poor Maggie crammed into my pelvis without any visible amniotic fluid. I clung to the fact that we could see two heartbeats. The only thing I could manage to say before sobbing and wanting to be held by Rob was "I just wanted my babies to be healthy". Never before have I felt so sick or had such an aching heart than I did that day.

Yesterday we also had our first follow up appointment with the NICU paediatrician and physiotherapist, and so far the girls are behaving just like healthy 12 week old babies (their corrected age), albeit slightly smaller than usual! My heart is slowly healing from that shock last December, and although I know there could always be tough times ahead, right now I am so thankful for our two beautiful, feisty, endearing, and yes, healthy daughters.


Mel @ House of Powell said...

Oh Marian, I had tears in my eyes reading this. Your girls are so lucky to have such a strong Mumma! I love reading your blog and your Instagram updates. You write so freely like you're talking to friends :)

ally said...

Oh Marian that poor achy heart from 6 months ago is so much stronger and more resilient now - - and so so much fuller.
Beautiful words

Jane @ Shady Baker said...

Your words are beautiful Marian. Your girls have an amazingly strong mum!

Kristen said...

You and Rob are such a strong team. Your girls are blessed. Your words about your experience are so moving. Teary eyed. So happy to watch them grow!

alison@thisbloominglife said...

Thanks Marian, your journey has been so hard and your spirit is so strong (and terrified I know). Our neighbour (24 weeks) Started a premmie support group locally and I know it's given her a sense of comfort and support. Is there anything similar your way? Take care lovely mamma. Xxx

CBH said...

Such a touching post. Your writing always transports me to the situation.

It must have been so difficult to hear your friend say there are worse things than being born at 26 weeks, but she is right.

Your friends will respect your requests to either wash their hands, not hold the babies or to stay away while ill.

You have all survived a remarkable journey, and to share it with us it is very special. Gorgeous photos, as always.

Continued best wishes
Christine (cvbgirl)

Christie Doorenbos said...

Love everything!!!! Wishing your heart to be filed with JOY! Your little loves are beyond precious! Be blessed.

Sarah B said...

Look at those faces, I can see how much they love you back. You are all so strong. Thanks for sharing xx

sophie said...

Gah, Marian! Tears rolling down my cheeks! I have so loved finding your blog, and Instagram. I'm a former student of Rob's, harking from the penno era if that helps to know who I am! I now have 2 babes of my own, and my little girl stopped breathing on the way home from hospital last September. She is completely fine, and we only spent 3 days in NICU but they were the longest of my life. I think you're amazing. Sending love and hugs from our temporary home in Japan! xo

Hazel said...

Hi Sophie, of course we remember you! So nice to hear from you too! Do you have an IG feed, if so what's your name. I think any time in NICU is scary as all you want is to take your baby home! It feels like yesterday that the staff woke up to a flock of chickens in our room at Field Botany, thanks to Penno. Ha. It was 2003! Once again so nice to hear from you and hope you come back to visit the blog!

sophie said...

Hi again, yes I'm fluff7173 (of course?!)
The chickens! That was a classic. So was looking over at "vegetarian" Helen chowing down on a steak. Ah, memories! Field Botany was the best. I will definitely be back to visit your blog, it's lovely.

nat @ natalia familia said...

Oh my goodness. That's an incredible list, there are plenty of things that I think I'd forgotten about a little bit. Its crazy how much of an expert you become though, isn't it? You are doing a great job blogging about it all. I'm not sure I could have written as wellas you are about it all three years ago. Thanks so much. xx

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