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.)

Our Baby: An unexpected arrival

Oh the irony. The very day I wrote this love letter was the day everything started happening, and our baby arrived only 2 days later- 10 weeks too early.

I'm writing an account of her birth for others who may have been through a similar thing, and for myself. I'm sure the sharp detail of the last few days will fade in time, and I want an account to look back on.

So last Wednesday was a normal day. I went to work. I wrote a love letter to my baby. I went to buy a maternity bra but decided to wait till closer to the time (murphy's law!). In fact the day was just so boringly normal. Until about 10.30pm at night when I was about to get off the couch and go to bed, and I felt something wet dripping down my leg. Before I looked I thought 'oh God, please don't let my waters have broken.'

In fact, it was worse than I expected- blood was streaming down my legs.

*Panic, panic, panic* - I went into auto response mode. I cried out to Matt and ran to the bathroom with blood dripping behind me. It was pooling on the bathroom floor, but somehow I managed to keep it together and called my midwife, who said to come to the hospital right away- we drove because an ambulance would take too long.

Somehow my orginisational brain hadn't quite been taken over by my reptile/panic brain, and I managed to grab my phone charger and some clean underwear on the way out- I realised I'd be in hospital for a while.

Sitting in the car on a blood soaked towel, I didn't let myself cry. Instead my thoughts were just 'Oh God please, let my baby girl be ok,' which I repeated over and over like a mantra. I wasn't capable of any more 'deep' thought. I sent a quick text to some close church friends asking them to pray urgently. Matt drove us there with speed, and got frustrated with drivers who were meandering along at the speed limit. But, being late at night, the car trip was quick- we were there within 20 minutes.

The first thing they did at the hospital was check the baby's heartbeat on a CTG monitor. Oh, hearing her heart beating away was the sweetest sound, let me tell you. Although something was wrong, she was allright, and that was the main thing. I was able to stop shaking and relax a bit.

Tests were carried out on me all throughout the night, and I was told I'd be in hospital for at least 24 hours after the bleeding stopped. So I mentally prepared myself for a 2 night stay. That would be ok, I thought, then I'd be back to normal life.

On Thursday it was revealed to me that my tests weren't coming back with very good results. In fact I was developing pre-eclampsia. I was in shock- I had naively thought that only older woman or overweight women or smokers developed this (I have no idea where this stereotype came from.) I was told on Thursday that my baby wouldn't be born at full term, in fact 35 weeks would be the longest we'd go, and I'd be in hospital till then.

I had a scan that morning and it showed that baby was only at the size of a 28 week old baby, instead of 30 weeks. At our 20 week scan she had been big, at the 26 week on she had been bang on, and now at 30 she was small. So this was another worrying indicator that something was wrong.

The day before she was born

So my vision for the future changed again. I cancelled all my ongoing work, I asked my brother to fill up a USB of movies for me. I mentally prepared for a 5 week hospital stay.

At this time my parents had decided to come down from Auckland for a few days, which I was so grateful for- there is nothing like seeing your parents to cheer you up! Matt was constantly in with me, and his parents visited too.

On Friday morning I texted Matt telling him maybe he should go to work today- it didn't look like anything was going to happen. A few minutes later the team of doctors came around and told me I was very, very unwell with pre-eclampsia. And baby had to be born today before I had a stroke or worse.

I was in shock. I felt fine, with no symptoms of pre-eclampsia (headaches or blurred vision.) I couldn't believe my body was failing me, us, when I felt so well. And our baby was doing fine in there, it wasn't her fault she would have to come out early, my body had let us both down and I was so upset.

So, I called Matt, crying, and told him to come in right now. 'Our baby is coming today,' - words I didn't think I would be uttering. I called my parents and they came in too, as did Matt's.

I was on a drip of various drugs for 4 hours before the c-section. The main one was magnesium which helped me not to stroke or hemorrhage, and helped baby's brain. Those 4 hours waiting for surgery were so surreal. In that time I had to let go of my 'birth vision' which I had had. I had imagined labouring at 40 weeks, in the bath (the bath in the corner of my room taunted me), with not much medical intervention, and active labour. I wouldn't get delayed cord clamping, or immediate skin to skin. Instead I was going into the most medicalised type of birth possible.

My last pregnant pic

Waiting, waiting, waiting

After the four hours of the drips, after consents and meetings with different staff we were good to go.

Matt getting funky in his scrubs, he knows how to make me laugh

Matt and I went into the operating theatre, and as they had told me, there were heaps of people in there, all focusing on their seperate jobs. I was shaking- so nervous. I had actually interpreted for someone getting an epidural before (not pregnancy related) and it had gone quite badly and looked painful and I couldn't get this out of my mind. But, in fact, after the small injection to numb the area, I didn't even feel the epidural go in. I just slowly began to lose feelings in my legs.

They lay me down, and it was so strange being a 'deadweight.' I told my feet to wiggle, my bum to clench and it didn't work. They did the 'ice' test on me, where they see how far up you can feel the ice, and I was numb from the chest down. They pricked me and I didn't feel it, so I was good to go.

My whole body was exposed for the whole theatre to see. They say you leave your dignity at the door of the maternity ward and pick it up on the way out. They are so right, but I didn't even care. Matt was up at my head end, trying desperately not to catch a glimpse over the sheet at what was going on. It was very comforting  having him there.

I felt what they were doing in the c-section, but it wasn't painful. After about 10 minutes the had got to the uterus and sucked the fluid out. They started pushing my tummy very hard to get baby out and I felt very very sick. After a bit of pushing she was out- I heard a tiny little cry and I can tell you I was SOOOO pleased to hear that sound. I cried on the operating table. 

It turned out that the placenta had half come off. I am SO grateful that the doctors operated when they did, because if we had left it, the situation would have been life threatening to both of us very soon.

We didn't get to see baby straight away because she was taken for assessment in the corner of the room. After about 5 minutes Matt was allowed to pop up and see her. I made him take photos to show me.

Our tiny, precious bundle.

The first glimpse I got of her was via photos. But I was pleased that she was doing well- her apgar score had been 7 then 8, then 9 (normal!).

I was sewn up and taken to recovery where Matt joined me. I was allowed a ice block, which was the best because I hadn't been able to eat or drink for about 24 hours. After about an hour I was wheeled in to see our baby. She was so tiny and helpless looking. Our precious little lamb, my arms ached to hold her.

But I was wiped, zonked and had to go back to the ward for a nice long sleep.

Baby A has gone from strength to strength, and is doing so well. She appears to have no medical issues apart from being small. So she just needs to fatten up, and she will be in NICU (neonatal intensive care unit) for 6-8 weeks.

My recovery has been up and down, with my blood pressure playing havoc, and now under control with lots of drugs. I have slowly felt better and more human each day, but anemia is wiping my energy. I was discharged after 6 days, and am now spending a lot of time at home sleeping, in between visiting Baby A.

Every day I have been able to visit my baby more and more, and get more involved in her care.

We love our baby so much. Although we wish she hadn't arrived so early, now she is here we can't imagine life without her. It's crazy how much love you can feel for such a tiny helpless creature. Our precious little lamb.

I will write a post soon about how A is doing, and life as a NICU mum- a whole new world for us.

Dear Baby

Dear Baby,

Now that we're only 10 weeks or so away from officially meeting each other I thought I'd write you a letter for your baby book.

I wonder how you're getting on in there, in your little warm cocoon. I imagine you are quite happy (as happy as an unborn baby can be) because I feel you kicking and twirling and hiccuping all the time. My weekly pregnancy updates tell me all the things you can do now - see light, co-ordinate movement, you have eyebrows and lungs that are ready to function- but even if I didn't know all this, I could still tell you are getting stronger and bigger week by week.

You're changing my body too in ways I didn't even know about. Yes the obvious- the bump- but also the waddle (I caught a glimpse of myself today- I am starting to walk like a duck), the fact that I can't put shoes on without your Father's help, the outie belly button, the continual heartburn. All constant reminders of how you are asserting yourself within me at the moment.

You're changing my fashion sense too- I used to be the type who would never wear leggings and jandals in public, but now I am all about comfort over style. Don't worry about your unfashionable Mother though, you will be the cutest, sweetest looking baby in all the wee outfits we have for you.

As for food, you have me craving cheese and milk. You must be growing some strong bones in there as I'm going through nearly a litre of milk a day at the moment. Oh my sweet tooth is as strong as ever as well, so I'm sure you'll inherit that too. McDonalds should be relegated to the realm of sometimes food, but I often use you as an excuse for just one more cheeseburger this week. One day I'll take you for a happy meal and we can indulge together. I haven't had any real cravings with you but you have put me off raw carrots for a while- a story for another day. Lets just say you owe me for 18 weeks of vomiting every day.

And, so much more than my body or fashion or food, you are changing me as a person as well. I have never felt so much love and excitement about meeting someone as I have you, baby. You are so, so wanted, and one day I will tell you about the journey we had to get you here. Your Dad and I are already besotted with you- you are on our minds constantly. Your Dad told me that you will be a Daddy's girl. I thought that was cute, and his way of showing he is so excited to meet you and to become a father as well. He will be such a great Dad- I can see it in him as a husband, as a friend and as an Uncle- how he interacts with your cousins. I think he will bring a lot of fun into our lives, and I know he will be the one you run to when he arrives home from work, after you've spent the day with me.

Your Dad and I are very excited to meet you. But- and I say this with love (and you will understand one day) - we are also terrified. Scared of how our life of just us two will change when you come along. Scared we won't know what to do when you cry, that we won't get enough sleep and will be irritable with each other or you. Did you know all parents are just winging it? Especially with their first child. I had no idea of this until I became an adult, an expectant parent myself. To you, we will seem to know what we are doing- but to us this is a new choose-your-own-path adventure, and we can only hope and try to do our best by you.

We aren't the only ones who are anticipating your arrival. Your Aunties and Uncles and cousins and Grandparents are all very excited too. Did you know you got a few presents this Christmas gone and you aren't even born yet! I have been surprised at how excited my little brother (your Uncle Chris) has been- your new life has brought joy into the whole family before you're even here!

Your Granny Malcolm (my mother) is secretly hoping you are a mini-me - she thinks it's payback time for all the years of tantrums I gave them (don't believe a word they say, I'm sure I was an angel!). Perhaps you'll be more like your father- a more demure, cute and shy boy from what I hear. Whoever you turn out to look like, or be like, we don't mind. We just can't wait to meet you and see you and learn about who you are.

We have a lovely name picked for you, I think it is beautiful and we can't wait till the moment we meet you and can call you by it.

Your Daddy and I already think you are amazing and can't wait until the day we meet you.

See you soon,

Love, Mummy xox