Baby A and Nicu life: an update

Here we are, our first family photo, with Baby A at 2 weeks old. 

She loves cuddles with her Daddy

We're  starting to get into a routine and past the early days of the NICU blur.

Baby A is doing so well. As well as a baby born at 30 weeks could. She is off all breathing support and off her IV line. Now she only has the naso-gastric tube (to feed her milk) and a few monitors on her. She looks like a real baby instead of an astronaut!

She is slowly gaining weight and growing. She still spends most of her time sleeping, but we've noticed when we do her cares (washing her, changing her nappy etc), she tends to wake up for longer periods to have big stretches and to look around.

We give her kangaroo (skin to skin) cuddles every day, and she really relaxes into it- falling into a deep content sleep. We read to her, talk to her, and often have a wee nap ourselves (those Lazy-boys are veeery comfortable.)

She had her first bath a few days ago and she loved it. She was very alert and happy, and I loved the interaction with her.

Next steps for her will be getting into a therma-cot (an open cot), but she has to be a bit bigger so she can maintain her own temperature first.
The other thing is for her to give breastfeeding a try. She had a wee try for about 5 minutes today, and the promptly fell asleep- it's very hard work! It will be quite a few weeks before she is able to get all her milk directly from me.

Milk drunk

Baby A is so placid (so far!), hardly ever crying. The nurses always tell us she has been so good. We love seeing her more as a 'real baby' now- with a bit more interaction than we had at the start.

The nurses tell us hearing, touch and smell are the strongest senses for babies so I talk to her lots, touch her and leave a little cloth that I keep on me with her. 

We think she is so beautiful and precious.

***

As for me. I am healing well from my surgery, and my blood pressure is nearly back to normal. The amount of drugs I am on has reduced greatly. I can wear 'normal' clothes now (jeans! tie up shoes!) and basically look like I did pre-pregnancy, so this all helps me feel more like myself. However, I am still exhausted all the time, still overly emotional, still struggling to cope with it all sometimes. My tolerance level is really low, even the littlest thing will have me in floods of tears at the moment. Really time to invest in waterproof mascara I think.

I've been cleared to drive (wohoo freedom!) by my midwife, who also insists that instead of pumping regularly through the night, I must try to get a stretch of 6 hours of sleep (I could kiss her! *mwah*). I am yet to actually get 6 hours of sleep  (getting about 4 at the most) because my body loves to wake me up to pump at strange hours.

***

I'm slowly learning more and more about life with a preemie baby. When I was pregnant I imagined passing my baby to other people, helping her learn to be social and not dependent on me. I thought parents who kept their babies isolated and with breathing monitors in their cots were paranoid.

Well now I am that mother. Because preemie babies have very low immune systems, I will not be passing her round to others for several months, (people can cuddle her at our home, not out and about), and we will be mostly staying at home. Because Matt and I have been so deprived of cuddles with her, when she comes home I think we will cuddle her all the time. My midwife said generally people are told not to hold their babies all the time (and I once agreed with this), but she said that if we want to hold her all the time, we should let ourselves. We've been through so much, thoughts of 'spoiling' her will be the last thing on our minds. I can't wait till I can hold her whenever I want.

We are investing in a breathing monitor too, as preemie babies are at higher risk for cot deaths.

Yes, I am now that paranoid mum, who will tell you not to come over if you have a sniffle, to wash your hands before you touch my baby, and I don't care.

***

We've been overwhelmed with the generosity of others in this time- I wrote a blog post about it here.

In saying that, I've been surprised at those who have taken the time to visit us- many people who I though were closer to me haven't even been in touch. Others who I wasn't as close with have been life savers, visiting us in NICU, giving me lifts to the hospital and so on. I think it's common to be surprised by peoples reactions and responses in these kind of situations.

If you are worried about contacting me, please don't be, I'd love visitors, I love to talk about 'normal' things and life outside of the hospital, and I'd love to show off my baby to you. 

***

Generosity

Having a premature baby in NICU is not the easiest of journeys.

However, this whole experience has opened my eyes to the generosity of people around us. I have never felt more loved, cared for, treasured in my life.

Friends, family, acquaintances have offered their time to drive me, their homes to stay in, meals, hugs and chats. Oh and gifts. Oh the gifts! Having a baby is like getting married all over again. So many gifts and flowers and chocolate! And so much joy.

Matt and I have been blown away with the amount of baby clothes, baby gear, and treats for us that we have been given. Baby A will never want for anything this first year of her life. And she will be the most stylish baby on the block! (when she can finally wear clothes.)

Second hand or new (it really doesn't matter at this age), we have been gifted more than we could ever imagine.

And I know one day we will be able to pass on these gifts and toys to other families, and that will be a joy for us too.

So, we want to say thank you. You all being so generous is making my heart explode with the love of a thousand cute puppies. Thank you xx

Beautiful things

I (re)found this song the other day.

(Beautiful things, Gungor.)

Here are some of the lyrics:

"All this pain,

I wonder if I'll ever find my way

I wonder if my life could really change at all

All this earth

Could all that is lost ever be found

Could a garden come up from this ground at all?

You make beautiful things

You make beautiful things out of the dust

You make beautiful things

You make beautiful things out of us

All around

Hope is springing up from this old ground

Out of chaos life is being found in you

You make me new, you are making me new."

I listened to this song on repeat and cried and cried (post-partum hormones partly to blame.) This song reminded me of a mere 6-8 months ago when I was feeling sad and hopeless after the miscarriages. Little did I know that straight away I would be pregnant again. And now I have my beautiful baby. Our rainbow baby, conceived in a time of dust, of emptiness, of dry land, now here, a beautiful thing from the broken. Out of chaos, came life.

And now we have been thrown in the deep end again, but I am clinging onto God, clinging onto hope. And I am seeing a pattern in my life of the valley, followed by hope and by new life, and I know I just have to keep walking here, one step in front of the other, and we'll be out the other side before we know it.

Dreaming

The other night I had a vivid dream. I had been cast in a play (and it was an honor.) It was our first rehearsal and I realised I had lines and lines to learn. I knew I also had to learn the other actors lines so I would know when to say mine. I felt overwhelmed at the lines I had to learn, and didn't know how I was going to do it. I knew other people were relying on me and didn't want to let them down, or have them feel like I wasn't a good actor.

I was out of my depth and didn't know what to do.

I'm not the type who usually interprets dreams, but the meaning of this one, considering my current circumstances, is clear. I am out of my depth. I am learning a new role and I have no idea how I am going to do it. I feel inadequate, like an impostor. The anxiety I felt in my dream translates to the anxiety I feel as a new mum, as a NICU mum.

In my dream I just decided to rote learn, line by single line. Repeating over and over till the words were stuck in my head. This is the only way I can learn with my baby. Putting one foot ahead of the other, taking the next step and faking confidence.

Hopefully one day, in not too long, I'll be dreaming about performing that play on stage. Confident and assured in my role.

Life with a NICU baby

One day you're a normal pregnant lady, with nary a care in the world, and the next you're a NICU (neonatal intensive care unit) mum. Now all you care about is weight gain and 'cares' and wet nappy weights, and mls of fluid and undigested milk and C-PAP pressure machines and pumping and and and and........

Having a baby in NICU requires a very very steep learning curve, all the while you're still maxed out on drugs and shock and recovering from emergency surgery. You ask the same question over and over because your brain quickly forgets. But slowly, you learn the lingo and start speaking a language no one else understands.

Having a baby in NICU requires you to ask lots of questions, to be assertive in your learning, all while trying not to feel overwhelmed. It requires lots and lots of reading of brochures about pumping and sterilizing and kangaroo care and the emotional toll and this drugs consent and that drugs protocol.

Having a baby in NICU means celebrating the small things- she did a poo! She grasped my finger! She is taking another ml of milk! She stopped losing weight! She gained 10 grams! She opened her eyes and looked at me for 10 seconds! She did a big yawn! She calmed down when I touched her!

Having a baby in NICU takes its emotional toll on you too. Up and down from post-partum hormones anyway, add in shock, stress and separation from your newborn. There are moments of elation, but many many times of tears, and yearning for her, and 'oh my body aches so much to hold her.'

Having a baby in NICU lets you see your husband in a new light. He is so in love with her, a sweet, caring, gentle love you've never seen from him before. His face lights up when he sees her, he is enamoured with his daughter. He holds you when you cry, showers you while you still have a catheter in and are not strong enough to stand, stays home to look after you in bed and bring you toast and tea. He happily drives you every night to visit your baby, all while still working, doing most household chores and making the meals. He doesn't complain. He really is your knight.

You don't feel like a 'real mum' because you're not the one looking after your baby. The 'robot womb' machines and nurses do that. Does she really need you? It often doesn't feel like it. You feel like a bystander in your own baby's life. You feel useless and stupid and stuck in limbo land between 'mother' and 'not-mother.'

You feel guilty for not being there all the time, but there are only so many hours you can sit and watch a sleeping baby. You worry if the nurses think you are visiting too much or not enough. You worry that she misses you.

You hear the NICU bells, whistles and alarms in your head when you aren't there. You become a pro at distinguishing this alarm sound from that, of knowing appropriate body temperatures, respiration rates, heart rates and oxygen saturation levels. You watch her monitors like a hawk.

You see the same parents in the corridors at strange times of the night and day. They look tired and drawn, like you. You exchange sympathetic smiles and small chat- you know exactly how they feel. You get to know the security staff who let you in the locked doors in the evening.

You can celebrate the small things about not being pregnant anymore - you can eat sushi! hummus and chicken sandwich! touch your toes and do your shoes up!- but more than anything you wish you were still pregnant with her, growing her into a big strong newborn, feeling her kicks inside you. You miss those kicks- they are gone too soon. You feel like your body failed and let her down. She is where she is now because your body couldn't complete a basic task. 

You diligently pump milk every 3 hours so that your baby can have your milk down a naso-gastric tube, and can continue to feed when she is home. You wake up at 2am and 5am and half asleep you pump, and steralise- rinse and repeat. You forget to hold the pump fully upright and your bed is soaked with milk. Your body leaks and leaks when you hold her, reminded of the task you cannot yet do- it will be weeks until she is strong enough to feed.

You constantly look at photos of her when you aren't with her. You compile video clips into a mini-movie and watch it over and over and over. You dream of her and wake with her name in your mind. You sleep with one of her stuffed toys clutched to you- comforted in ways you were as a little girl while you sleep without her.

You take one day at a time, because thinking about the amount of time she will be away in hospital is too hard to bear. You are wise enough to know that one day this will all be a distant memory, but raw enough to not want to think too far ahead.

You're incredibly greatful that she is ok. So, so cognisant that things could have easily gone the other way. So happy that she is alive, and will be a normal, healthy baby and child as she grows. And yet, you're still mad and sad and hurting that it all had to happen this way. Conflicting emotions tug you up and down every day.

You are thankful for the amazing NICU nurses, the doctors who made the decision to operate. To the Neonatal trusts who offer support, to the caring midwives, to the Ronald McDonald house who offers parents a room in which to take refuge.

You are greatful for the unwavering support of family and friends. The texts and emails and 'how are you's' and meals and flowers and packages in the mail. You know you and your family are so loved, so cared for.

You are thankful to God, who gave you this amazing gift of life, who knitted together this baby- who was only a bean at the 7 week scan 25 short weeks  ago, and is now a real baby. You marvel at the wonder of life.

And more than anything you are greatful for her. For just being your baby, for being alive. Even though she doesn't live in your home yet, she is now always a part of you. She has changed your world in so many ways in such a short space of time and you wouldn't have it any other way.

(Read about our baby's arrival here.)