When platitudes start to make sense

When the Peanut was born, people would tell me all number of platitudes. The most common from nurses and hospital staff was that the Peanut “is not her diagnosis”. Internally, I scoffed. I was faced with another piece of bad news each day leading to an overwhelming list of medical issues.  This statement did nothing for me. It didn’t help me or the Peanut and it felt like it came from a place I would never reach.

But now, 15 weeks later, I’m starting to get it.

In a recent update from the Peanut’s paediatrician she outlined where her medical situation was sitting. Her paediatrician is a lovely caring woman, but tone in medical summaries is never warm. The reports are clinical and medical and lack any of the heart that being around the Peanut brings.

And then I got to this phrase:

“While development is progressing, the gap between the Peanut and normal is widening.”

In my head I saw the Peanut in her hospital bassinet alone at night, as she would have been each night, with wires coming off her. The words are like the hospital itself. They isolate me from her, from the people who love her. They make her something other than “normal”. They turn her beautiful smile into a disappointment and a sign of late development, rather than something to be celebrated.

The words put distance between us, and I’m sick of it.

I’m sick of hearing her diagnosis and letting it colour how I feel about her. Sick of hearing diagnosis and seeing her differently. I’m sick of hearing only the negatives. The Peanut is my baby and she is not her diagnosis. She is a person. With a beautiful smile.

If I could talk to myself 15 weeks ago, I’m fairly certain I would have about as much luck convincing myself that “the Peanut is not her diagnosis” as the nurses did, but I’m not going to feel bad about where I’ve come from. I’ll just feel good that in the place I’ve ended up, the platitude now makes sense.

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Something to smile about

In the last 15 weeks I have felt worse than I ever thought possible. When I think back to those first two weeks in the hospital I remember walking as if my legs were filled with lead. The grief was physical and heavy and weighing me down. I walked around the NICU at a glacial pace, unable to take part in the world like a normal person.

Life in the NICU is like being in the Twilight Zone. Away from windows, time slows down and speeds up at an erratic pace. The day to day life happening outside the hospital feels like an alien world. You are so consumed with the world inside those rooms that realising people are going about their lives feels cruel and bizarre.

When the Peanut got out of hospital it felt like a lot of my sense of normality came back. While we still had visits with specialists, nurse home visits and therapist appointments, our day to day was in the real world. And it was in the real world that we first got to see her smile. The first few smiles were elusive. I wasn’t sure if they were wind, or a genuine expression of happiness.

A good friend watched the Peanut while I blew rasberries on her stomach and she swore she saw a smile.

I didn’t catch it.

I gave her a bath and thought I saw hints of a smile. But it was too fleeting. Too hard to prove.

One of the paediatricians had told me that if a baby can hear they will first smile around four weeks after their due date. The Peanut can’t hear, at least not in the same way as a neurotypical baby, and yet, around seven weeks past her due date, we got her first smiles. And at nine weeks past her due date we caught some on camera with the beginnings of a giggle as well.

After so many sad posts, and more sad days than I have ever thought I would experience, I wanted to share something happy. Watching the Peanut smile and giggle as I tickled her cheek and chin was just about the best thing I have ever seen.

While there will be many milestones that I’m sure I’ll agonize over, I think this will always be my favourite. When I knew the Peanut was happy.

I hope she makes you smile as much as she made me!

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Oblivious to all the worries of her mother.

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Smiling with your tongue out is the way to do it.

 

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Top Mommy Blogs

When I first sat down to write this blog, in January this year, I searched high and low for other Mum style blogs to read. A huge source of inspiration were the blogs I found through Top Mommy Blogs. I quickly decided I wanted to be on that list of top blogs so I could connect with more readers and meet other Mums going through similar experiences. But I had to be patient and wait until I had been blogging regularly for three months.

And now I qualify! I got the acceptance email yesterday and now my blog features along some of my favourites like Lydia Unicorn, and Space Monkey Twins.

Top Mommy Blogs ranks and rates the blogs in its directory based on readers’ votes. You can vote daily just by clicking on the banner at the bottom of each post, or the badge at the top of the side bar. The more votes I get, the more readers I will be able to reach.

So if you’re stopping by to read a post, help me out with a quick click. Thanks!

 

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How it feels when your life makes other people thankful for their own

Prefix: I wrote this post (including the note at the end) 10 weeks ago when the Peanut was still in the hospital. I don’t feel this way now. This post was about as bad as it got. I was angry. I was looking for someone to blame. And I didn’t want platitudes intended to comfort. I wanted to rail against the world. 

While I am in no way 100%, I have come a long way since this day. But I don’t want to ignore that I felt this way. This journey has been rough, and I don’t want anyone to think I have been rainbows and sunshine throughout, because I haven’t. And I’m not there yet.

People bring up the “Welcome to Holland” poem as a way to make you feel better about the situation you find yourself in. I got to the point where if someone else brought it up, someone who had no experience of what I was going through, I just may have punched them. I’m not happy I’m in Holland, but I no longer feel like I’m in a Thai prison. 

 

I’m sitting in a room with sunlight streaming through the window. My baby is lying in a cot next to me and I can hear her snuffly, hedgehog breathing. If I close my eyes and concentrate I can almost make this feel normal. But the beeping from the monitors and the smell of sanitizer bring me back to reality.

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The Peanut, five weeks old.

When I open my eyes and look around I remember where I am. In hospital. In the NICU, with the Peanut asleep beside me. At 5 weeks old, the Peanut has only left the hospital to take brief walks in the pushchair. Her only car ride has been in the back of an ambulance being transferred between hospitals.

She has never sat in our car seat.

There are so many things in this room stopping me from enjoying my baby. The plastic cot which in no way resembles the beautiful bassinets set up at home that have remained empty; the tube coming out of the Peanut’s nose which gives her breast milk straight to her stomach because she has problems with her breathing and cannot coordinate her sucking and swallowing while still breathing; the cord attached to her foot which monitors her heart rate and oxygen saturation which prevents me from moving freely when she is in my arms; the pages and pages of notes attached to her cot outlining every feed, every bowel motion, every unsettled moment of the Peanut’s life which allows me to read into every part of her day with heightened levels of anxiety.

Without all these distractions I just might be able to enjoy her. But then again, even without the distractions my brain provides its own reminders that the Peanut is not just any baby. When I called this blog the one in a million baby I had no idea how accurate I was being. I had no idea she would be so special or unique, that her condition would confuse not just me, but would have doctors stumped as well.

I had no idea that our baby would cause people who hear about her to realise just how lucky they are. I want them to realise just how fortunate they are to have a healthy baby with a normal brain, to realise that things don’t always go to plan, and that a crying baby who wakes you multiple times in the night is something that some mothers can only dream of.

I have been told by many of my friends and family that the Peanut puts things into perspective. Other problems seem small once you hear about the obstacles in her way. While I am glad people are recognising their own lives as being blessed and fortunate, I did not want my baby to be the one causing that kind of reflection. I know that feeling. When you see something horrible happen to someone else and you feel so lucky it’s not you it’s happening to. You feel warm and comforted in your own life, knowing that the horrible story is outside your four walls of existence. You tell the person that you are thinking of them, and it’s true, but you don’t have to live the story, you get to wake up and think about other things.

It’s a lonely place when the horrible thing is happening to you instead. You don’t get to escape it. It’s your life. Your reality. Even with all the support in the world, and we have an incredibly supportive families, the Peanut is our baby. Even with all the offers of help and promises of babysitting, she is our baby and the main lives that are affected are ours.

I know people will tell me that the Peanut is not her diagnosis. That babies are miraculous and that she will show me just how amazing she is. But for every baby that breaks through expectations and surprises doctors and therapists, there are more babies who meet those expectations and fulfil their diagnosis. We don’t hear about those cases. The doctors and nurses mention the success stories. No one brings up the other cases where families struggle daily with children who never grow up. Children whose mental age never progresses past that of an infant. The Peanut is a beautiful baby. But will she ever recognise I am her mother? Will she ever be able to communicate with me?

Even without the tubes and doctors, the beeping monitors and antiseptic, my own brain reminds me of who she is. She is a baby with more things wrong with her than I could have ever imagined. She is a baby that is deaf, blind, and with brain abnormalities that can cause seizures and serious developmental problems. Just one of those conditions would be an obstacle, but the combination is terrifying.

Each problem comes with its own support organisation. Her eyesight problems get the attention of the Foundation for the Blind. Her hearing sees the deaf community put up its hand. But there are no organisations for a profoundly deaf and blind child. Each one looks at me with a shrug and an apology. They each exist in their own silo and don’t know how to help her.

The Peanut has been cautiously diagnosed with CHARGE Syndrome. It is a syndrome where the person has a collection of areas of the body that are affected. She ticks a lot of the boxes. She has eye, ear and heart problems which are all part of the CHARGE package. She doesn’t have the choanal atresia which affects the baby’s airways, but has her own breathing issues. She also doesn’t have the genital issues that accompany CHARGE, but may well have reproductive issues later in life. She also has a number of smaller physical signs of CHARGE including slightly floppy ears and a short neck.

Even with this tentative diagnosis, she still seems to be at the bad end of the spectrum. My research brought up many children with hearing issues and some sight issues, but none of them seemed to be both profoundly deaf and blind. She is a special case even within her own cohort.

I know normal is not the only way to be, or even the preferable way to be. I can hear the comments already saying what is normal anyway? A life time ago, I wrote a blog post entitled just that. I was happy with something other than normal. I had accepted that our baby would have challenges. But the Peanut’s case is so far beyond normal that it hurts. Her challenges are the kind that put most people’s into perspective. No matter how hard I concentrate, even without the monitors and hospital walls, I can’t make that go away.

NB. I appreciate all the support people have offered me on this blog. Hearing words of support from people who I respect a great deal has been invaluable to me. And for the majority of those people I have felt nothing but good wishes and support.

But, I will say this. If you are going to comment and tell me that my life will be better than it was before, that I will look back and “not have it any other way”, please keep your comments to yourself. If I could go back and change things to make her have an easier and more enjoyable life I would do it in a heartbeat. I’m sure I will learn great things from this experience. I am sure I will meet amazing people who I never would have met otherwise, but I would swap all of that for the chance to have her home with no health concerns to worry about.

I would rather have a healthy baby than make these special friendships people tell me I will make.

I would rather have a healthy baby than be taught amazing lessons about love and patience.

I would rather have a healthy baby than learn I have strength beyond what I thought possible.

As far as I am concerned those things are a consolation prize in what is otherwise an incredibly hard situation. They do not make this the preferable option, they are how you survive an impossible life. I never wanted to simply survive my life. I wanted to live it. 

Maybe those people who say they wouldn’t change anything about their child are better people than me, and I give them credit for that. But if I could fix this for her and ensure she would be able to see and hear and have something even resembling a normal development I would do it. She wouldn’t need to be perfect, but we are so far from perfect right now that no consolation prize is going to make me thankful for where we have ended up. 

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I’ll be back – but in the mean time… The Super Power Baby Project

This post is just to say, I’m still alive, don’t give up on me. I will be back! The last 3 months have been excruciating, but I’m still here, and believe me I have a lot of thoughts to share. These thoughts will come out, even if they aren’t applicable by the time they feature. In the mean time I wanted to share an amazing project by a New Zealand photographer and her husband, inspired by their daughter Evie. Made me laugh and cry. So I wanted to share it.

Check out this amazing project

Check out this amazing project – The Super Power Baby Project

 

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Hope is a dangerous thing

A short note: Thank you to all the people who have stopped by and left comments of support. I have continued to read all of your blogs and check up on your comments in my absence. I cannot say that this is a full return, but I had a desire to write tonight, and couldn’t see why I shouldn’t.

 

Hope is a dangerous thing. And when I’m not paying close attention, my own stores get refilled to unrealistic levels.

When the Peanut was first given her list of many ailments,  at each stage I held out hope. When I read up on grief it turns out this kind of hope is akin to bargaining. I told myself that I could handle what we had been told but not the next step on. I held out hope that we had heard all we had to hear about what was wrong with her.

At a certain point it did feel like we had heard the worst. But by then there were no more worst case scenarios, we were living it. I couldn’t see how we could get any more bad news. When we found out she was deaf on top of being blind and with brain abnormalities it really felt like there could be no worse news to pile on us.

And I was almost right.

While they had no more new bad news to tell me, the doctors found ways of telling me what I already knew as if it were more bad news.

After we had been told the Peanut could not see we saw the ophthalmologist again. He inspected her eye and drew back in surprise.

“I feel a bit ashamed of my earlier reading of her,” he said. “It’s looking quite different to what it did a few weeks ago.” I shook my head a little and assumed he meant for the worse. I was so accustomed to hearing bad news, my brain wasn’t wired to hear anything good.

He explained that her eye looked in a much better state than before, but that there was a cloudy haze in the centre of her eye. He pulled the surgeon in to have a look and the surgeon exclaimed that if the haze went away she should have reasonably normal vision. She could even be able to read a sight chart.

I could not believe it. My little Peanut, who had been declared blind, might be able to read a sight chart. She could be able to see.

On the way back to the ward, the nurse said she had held her breath as he delivered this news and hoped he knew what he was saying.

I told her that after so much bad news I was highly cynical of any good news, so not to worry about me getting my hopes up.

But hope is insidious.

Two weeks later we saw the ophthalmologist again and what I hadn’t realized was that part of my brain was hooked on hope and was pinning a lot on this appointment. He told us the haze was still there, but her eye looked quite good otherwise. He scheduled one more appointment for when the Peanut would be 8 weeks old and said if the haze was still there they would schedule surgery. He told me you have to get in before they are 10 weeks old if you want to ensure vision.

At the 8 week appointment, just last week, the ophthalmologist said she needed the surgery. They would remove the hazy part in the centre of her eye and hopefully give her some vision. They talked me through the surgery with a diagram, and both the surgeon and the doctor seemed optimistic.

The woman who a few weeks ago told that nurse she was cynical about any doctor’s promises was jumping into hope like it was a hot bath. She wanted this, more than anything.

So today, I find myself in the children’s ward, hope gone, with the Peanut recovering from general anesthetic in the cot next to me.

The Peanut’s eyes are not swollen from surgery. There are no bandages. Her eyes aren’t bloodshot. Because the Peanut didn’t have her surgery. The surgeon performed a thorough eye exam first, while she was asleep, and found that the surgery would be useless. They could remove the hazy area, but the rest of her eye was not going to be able to work anyway.

The Peanut is still blind, and will always be blind.

At best she will see light. So she will know night and day, but not her parent’s faces.

This news is the same we heard all those weeks ago. But now it feels like a double blow. When they couldn’t find anything new to tell me, they told me an old piece of news and made it hurt like a brand new wound.

 

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Good bye for now

Just a quick post to let you know I am taking a break from blogging. Not forever, at least that’s not the plan at this stage.

Mr. Million and I have some decisions to make in the coming weeks that I don’t feel it’s appropriate to share with the world. These decisions are not just mine, and I feel that putting them out there is not the right way to go at this point. I am continuing to write, and one day hope to make those posts public, but today is not that day.

Thanks for all the kind words of support since I have started this blog. I have found it to be an overwhelmingly positive experience on the whole. I have realised, however, that I started this blog in the weeks after bad news, rather than in the thick of it. With some of the harder things we went through I didn’t write about them until they were over and things were looking brighter. As we are in the eye of the storm right now, I don’t think I can make this public just yet. I need to work through some of this without feeling as if I am accountable to the internet in any way.

I will be continuing to read all of your posts and hope when I come back to be able to reconnect with all of you.

So it’s goodbye for now, but I will be back, probably with a dozen or so posts in the bank.

 

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Not the post I wanted to write

I do not want to be writing this post.

It has been 11 days since I gave birth to the Peanut, and I have thought a lot about how much I wish I could be writing a different post. I was supposed to be sleep deprived and potentially emotional, but safe at home with my baby and Mr. Million enjoying our first two weeks together. I was supposed to be able to enjoy the many gifts that have piled up on our doorstep in the last fortnight from loving family and friends. I was supposed to be struggling with breastfeeding but maybe getting the hang of it. I was supposed to be complaining about baby vomit on my clothes.

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We had one day to enjoy The Peanut.

Instead, I have spent nights in the hospital, nights on my sister’s spare bed, nights in my own bed, and I have not once woken up to my baby’s cry, but instead have woken up to an alarm clock and a breast pump. I have cried at each courier package delivered to our house with gorgeous baby clothes and toys.

This idea of being away from your baby is probably fairly familiar to anyone with a baby in intensive care, but my situation differs in a few dramatic ways. The Peanut was born by induction on April 6th at 2.15am. It was a drawn out pre-labour, with two gel applications and very little movement until they broke my waters at 4pm on April the 5th. From there it felt like a whirlwind complete with a half working epidural and going from 2cms to 10cms in two hours. The Peanut was born posterior, which added to the pain.

There were a couple of funny moments including watching Mr. Million and my Mum try to find somewhere to sleep when the labour seemed to be stretching into another day. They tried a number of covert operations, slipping in and out of the room giggling when they were told off by the night shift nurses. Mr. Million ended up building himself a nest in the bathtub and would emerge intermittently, hair ruffled, after an hour or so of sleep.

When the Peanut came out she was incredibly floppy and was handed straight to the pediatrician to give her oxygen. I watched from the bed as the pediatrician forced oxygen into her lungs. She made small mewing sounds, but no real cry. Mr. Million watched with a growing sense of alarm, but I felt like everything would be ok. While the midwife patched me up, Mr. Million and my Mum went with the Peanut to the intensive care area down the hall and came back and forth giving me updates.

Finally, I was wheeled down to see her, having very little feeling in my right leg.

She was hooked up to oxygen, a drip and had multiple electrodes on her to keep track of all her stats. None of this really worried me. Plenty of babies start their life in intensive care, and they are fine. I was anxious to get a look at her face to see how her eye looked, but aside from that the post child birth hormones were making me feel pretty good.

The pediatrician explained a few things about the Peanut. She hadn’t been able to get a good look at her “good eye” but her left eye, which was our main concern, seemed to have a cyst in front of it which was in fact keeping the face symmetrical. Nature, it seemed, had helped the Peanut out with its very own prosthetic.

The pediatrician explained the Peanut was very flexible (was anyone in the family double jointed? She asked us), had a shortish neck (not football player short, but just shorter than one might expect given Mr. Million and I did not have short necks), and her rib cage appeared to be ever so slightly larger on one side. These were all non issues as far as I was concerned. I went to bed exhausted, but happy.

In the morning I managed to walk myself out to see her and before Mr. Million could get back I had my first go at breast feeding. The nurse got me a nipple shield to help things along and it seemed to work, a bit at least. She was very sleepy, and didn’t open either of her eyes, but the nurse wasn’t worried, so I wasn’t either. I went back to bed for a couple of hours and woke up when Mr. Milion arrived.

We went down the hall together and saw her. They had her dressed all in yellow and she looked adorable. We both stood and stared at her. She was beautiful. In the afternoon we had various visitors who came and oohed and aahed over her. She stayed quiet and sleepy the whole time. People commented on how “nice and calm” she was. This seems like a good thing for most babies, but within a few days the same phrases would make me cringe.

We had one day of enjoying her. One day to fall in love with her. One day to feel happy. One day to stare at her without anything else but awe and love. One day to sing to her and feel like she was responding to our voices.

On day two, everything would come crashing down and we haven’t been able to pick ourselves back up since.

Day two began like day one. It was a Monday and the main pediatrician was doing his rounds. He got to the Peanut while I was gone and Mr. Million stood and listened while he told two junior doctors what he thought about her condition.

I got back to see Mr. Million looking stricken and a nurse asking me if I had any questions for the pediatrician. I hadn’t heard what he had to say, so no, no questions sprang to mind. He began again with his diatribe of alarming and life stopping conditions.

The Peanut:

  • was most probably completely blind – what we thought of as a good eye was useless.
  • most likely had serious brain abnormalities which could mean she had some motor skills but very little else.
  • had very low muscle tone.
  • would need an MRI immediately as well as a series of other tests which would probably mean a move to the bigger hospital very soon.

I looked at Mr. Million and immediately fell apart. None of it made any sense. The doctor left quickly after a cursory pat on the arm and took the junior doctors with him, leaving us to reel at the news. He left the Peanut with her blankets disheveled and the two of us staring at her wondering what he had seen when he looked at her.

We walked back down to my room and both collapsed into tears. But quickly we started unpacking and laying waste to everything he had said.It’s amazing how the brain works to lessen shock

“How does he know she’s blind? He barely looked at her!”

“The scans all said her right eye was fine, he doesn’t know what he is talking about.”

“Look how hard she grips my finger, there’s nothing wrong with her brain.”

“The other doctor commented on how strong she was, her muscle tone is fine.”

Denial is a powerful drug, and the two of us were full of it.

How could anything be wrong with this baby?

How could anything be wrong with this baby?

Now, 10 days after that initial assessment, we have realised he saw it all. He delivered it in an appalling and unprofessional manner, but he knew what he was talking about.

The next day she was booked in for an MRI. We got the initial results of the MRI which said her left eye was completely absent, Anophthalmia. Her right eye, the one we had been told all along was normal, was also not right and looked smaller than it should, Microphthalmia. Her chances of any vision were very slim.

As I lay in the hospital bed that night Mr. Million and I texted each other about the prospect of her being blind. He sent me an article on the cycles of grief and told me we could be hopeful, but might want to accept that she could be blind. I agreed. Blindness was difficult, definitely. But not the end of the world.

I felt so proud of him for accepting this information so quickly. All his versions of “you are my sunshine” now felt more important than ever.

The following day we were on an ambulance headed for the city where the Peanut would have a host of other tests including a heart ultrasound, where they would discover that the Atrium Septal Defect was there afterall, although not too alarming. They would also find an open Patent ductus arteriosus (PDA), which usually closes over in the first few days after birth.

She also had kidney and liver scans which all came back normal, and xrays of her bones, which also looked fine.

But it was her brain we were worried about. After an initial look at the MRI results, the hospital pediatrician sat us down to explain what he could see so far. It wasn’t the final report but they could already see she was missing the corpus callosum. I sank back into my chair, tears rolling down my face and looked at Mr. Million and my Mum. The doctor explained this by itself isn’t always a problem, but when they find something wrong with the brain they need to look to see if there is anything else wrong. They would also be looking to test her pituitary gland to see if her hormones were fine, as this was something else that went hand in hand with agenesis of the corpus callosum in many cases. Somehow this knowledge calmed me. While none of this was good news, I was still feeling hopeful that the Peanut would be one of the many people walking around with a missing corpus callosum that lead totally normal lives. I also assumed this would be the only thing wrong with her brain. Surely, this must be it. We had already had so much bad news, this must be it.

This day coincided with day 4 of the Peanut’s life, and the day that the baby blues usually occur. Who knows what the baby blues really feel like, because I was a mess. I stopped worrying about crying all the time and let the tears flow.

In the mean time an ophthalmologist had assessed her and proclaimed her most definitely blind. We weren’t surprised by this, but it still felt like a blow.

The following day the formal MRI scan results came back and we were sat down once again. The doctor went over the results we already knew and then dropped the bomb. Not only was she missing the corpus callosum but the frontal lobe part of her brain did not look as is should. There were fewer folds than they expect to see.

He was careful to tell us, as all the doctors have been since then, that there is no way of telling what this will mean for her development, but that having two major brain abnormalities increases the risk of major developmental delays. Add the fact that she is blind to this mix and you have a scary picture. At this point we hit the proverbial wall and both went into a state of shock, broken only by long periods of uncontrollable sobbing. Mr. Million asked what is the frontal lobe responsible for. The next words broke my heart. “Thinking.” He said.

When you get news like this so many things go through your head. But the main thing I kept thinking over and over was that it wasn’t fair. That we didn’t deserve this. That the Peanut didn’t deserve this. Grief is a process, and when you are in it, you just want to wake up and be someone else. I still do.

Since that day we have also found out it is highly likely she cannot hear.

At each step of the way Mr. Milion and I have both rationalised and accepted things. When I was still pregnant we had faced that she would only have one functional eye. We told ourselves that’s why you have two.

When she was born and we thought she would be blind we faced that. We told ourselves that blindness is a challenge, but that it would be ok. Mr. Million saw himself reading to her and singing to her.

When she was missing the corpus callosum I felt a sense of calm. I told myself that she would be one of the people it does not affect.

When she had other brain abnormalities we began to run out of things to tell ourselves. Life would have been tough with a blind child, but how do you teach a blind child to cope with it if their brain doesn’t function at a normal level? If they can’t think? If they can’t count their steps or think ahead, or make decisions?

The day we watched her take her hearing screening test and saw the line fall well below the 75% pass rate Mr. Million’s dreams of reading to her and singing with her disappeared. He stopped singing “You are my sunshine”.

I imagined what it must be like to be the Peanut. No sound, no sight. Just touch and smell. I know she knows nothing else. But I can’t help but picture her crawling across the floor (if she will ever crawl) in a black room with no sound. We have been told the hearing screening is just that, a screening. But we are not getting our hopes up that this is not the case. She is a locked box.

I wrote months ago about the shopping list of concerns that existed while the Peanut was in my tummy. We had that list slowly whittle down to one eye issue. Now we had a list longer than any we had ever imagined. Longer than we ever would have considered plausible for life.

When we had our amnio all those months ago, Mr. Million and I agreed that if it came back positive for Down’s Syndrome we would terminate the pregnancy. We had decided we were not up to bringing up a child with that kind of need. Now, we are faced with a baby whose needs far outweigh most Down’s Syndrome children.

The shopping list is overwhelming.

The Peanut:

  • is blind
  • is seriously hearing impaired if not completely deaf
  • has a missing corpus callosum
  • has an abnormal frontal lobe
  • has an ASD (atrial septal defect)
  • has an unclosed PDA

On top of all this, the Peanut is not feeding by herself. From the very early days she has been sleepy. The hospital follows a four hourly feeding schedule and until very recently the Peanut has had to be woken with a nappy change in order to even attempt to feed her. She tried to suckle but would often get one or two sucks in and then appear to be asleep again. To begin with they feed her the rest of her milk with a syringe. The Peanut would cough and splutter her way through it. When she had her MRI they put a feeding tube through her nose into her stomach and she has been getting the majority of her milk via that tube ever since. The nurses try to tell me that sleepiness is normal in babies this age. That jaundice can cause sleepiness. But when I try to feed her and she refuses to drink, or holds milk in her mouth and refuses to swallow, I can’t help but feel her brain issues are already playing out in this stage of her development. In recent days she has begun to wake for feeding but still cannot keep herself awake to feed for more than a minute or two. I sometimes succeed in giving her 3-6mls via breast feeding, and the feeding tube supplies the rest. She’s being feed around 90mls now, so is nowhere near her actual needs.

I cannot even begin to explain how excruciating these past 10 days have been. As I write this I feel a sense of distance, as if it’s not even real. In desperation I looked to the blogging world a number of times to see if I could find a case as extreme as this, but I found nothing. There are babies with missing corpus callosums, babies who are deaf, and babies who are blind. But I have not found anything as all consuming as the way the Peanut is.

The doctors continue to tell us we cannot predict any outcomes for the Peanut. This is supposed to provide hope, I suppose, but when this is coupled with the prediction from the doctor that he doesn’t think she will be a tetraplegic in a wheelchair it’s hard to really get too hopeful.

There have been so many thoughts and feelings in the last fortnight that I cannot get them all down. I will try to write as much as I can, so that I can remember and as a way to get it out, but I know I am going to miss so much.

Sufficed to say I have never felt so bereft or heartbroken in my life. I have never cried so many tears or felt so close to absolute despair.

When we walked into our house without a baby and saw the change table and bassinet in our lounge I felt a pain in my heart so great I didn’t think I would be able to move. When I watched Mr. Million bottle feeding his gorgeous niece and saw how brilliant he was with her I swallowed back tears and again thought how unfair it all was.

This is beyond anything I have ever imagined. And the decisions Mr Million and I make out of this are some of the hardest unthinkable choices anyone would ever have to make.

There have been some lovely and even funny moments in amongst the pain. There was the Peanut’s first bath, where she looked up, unseeing, at us and seemed in a state of absolute bliss. We swished the water around her and I imagined how silky and warm it must have felt for her, with no other sense to guide her. Then there was the phone call from the nurse late on the evening after she had had her bath to tell us The Peanut had pooed in such an almighty way as to require two nurses to wipe her down and give her a second bath to clean her up. I laughed at the normalcy of it and imagined the Peanut had done it on purpose in order to get two baths in one day.

Then there are the days where we don’t have to see any doctors or hear any results. We can just enjoy her and pretend nothing is wrong. These moments have been amazing, but few and far between.

I have received so many lovely messages and texts from friends, both real and internet based, waiting to hear news and see pictures of the little Peanut. I shrank away from every text and message. I knew I would have to tell everyone eventually and somehow felt bad about having to deliver that bad news. I wish I was writing a different post right now. I wish I had better news.

 

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The final countdown – and it’s much shorter than we thought!

We went from 3 weeks to go to 2 days to go with just one phone call.

This baby is not going to wait any longer. While my liver function results were fine, the second part of the test showed my bile salt levels were elevated so the obstetrician is pretty sure I have cholestasis.

When I got the call she said, “so I mentioned at our appointment that this would mean being induced in week 37. You were 37 weeks yesterday. So which would you like, Thursday or Friday?” Today is Wednesday, so without thinking I asked for Friday. It was surreal. Like booking in a hair cut, or massage.

This call came half an hour after my midwife had left the house. I had a pretty appaling tension headache last night that kept me up most of the night and lasted well into the day. She instructed me to get back into bed, drink lots of water and take some paracetamol. I had to call in sick for parent teacher interviews and went back to sleep. My midwife came by and did the usual checks and once she was satisfied I wasn’t suffering from preeclampsia she left.

After getting off the phone with the obstetrician, and realising I didn’t know the time of the big event, I text Mr. Million who was at school for parent teacher interviews and waited for the call back.

What followed has been a couple of hours of excited and teary phone calls and responding to texts with many exclamation points. The house is a tip, the car will have to miss its mechanic’s visit, and I have not watched nearly enough TV yet, but we are in the final countdown now, with fewer hours than anticipated.

So that’s it! I have to go in for another ECG to make sure the Peanut is happy in there tomorrow, and then Friday is the big day.

Mr. Million and I are both reeling in shock a wee bit, but also very excited to have a day to be ready for. I’m anticipating I won’t be blogging up a storm in the next few weeks, but I will try and get a post birth post as soon as is realistic.

Next time I blog, I’ll be a mum!

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A fire drill, electrocardiogram and threat of early induction – not your average doctor’s visit

Even the electrocardiogram took on a farcical note as I pleaded with my own heart rate to drop, while the midwife wanted to see spikes in the Peanut’s heart rate.

A fire alarm, the threat of early induction and two hours in the hospital for what was supposed to be a quick catch up were not what I was expecting when I went to Hutt Hospital this morning. But as my journey has already proven to be a bumpy one, I don’t know why I was surprised.

My 10am appointment began at 11am after I had waited for 45 minutes only to have the fire alarms go off in the hospital for a routine fire drill. I wasn’t in any particular rush, but wondered with horror at the thought of the women upstairs on the 4th floor in established labour and what they were supposed to do in the drill. I didn’t see anyone mid push in the carpark, so assumed they let them continue in the privacy of the delivery suite.

When the doctor finally saw me it wasn’t the doctor I had seen last time I was at the Hutt Hospital, but this didn’t worry me. She sat me down and asked how things were going. I had a short shopping list of minor concerns to talk to her about and we worked our way through them. Before we got to the end, my original obstetrician, back from the days of the amnio and that first big scan that got everyone worried at 24 weeks, made an appearance. I had been holding out well in the tears department, but as soon as she sat down and asked how I was I knew I was in trouble. We got through the tears and then I asked about the last item on my shopping list.

Since work finished the previous week I have been experiencing very itchy feet and hands. This is particularly bad at night. When I told them this both obstetricians looked at each other.

Cholestasis was the concern. This is a condition which affects 1% of pregnant women (I’m beginning to feel like I am taking the team on the percentage stakes a little too often these days) and involves the mother’s liver function.

The obstetricians sent me for an immediate blood test and let me know if this turned out to be the case, I would be induced at week 37 to avoid potential complications for both the Peanut and myself. For those of you not taking note as carefully as I am,  week 37 is tomorrow for the Peanut.

Instead of this news bringing on further tears, I actually laughed. I had plans to attend parent teacher interviews in a couple of days. The car was booked in to be fixed within the week. The house was a pigsty that I had been putting off cleaning until this blessed maternity leave, and now it looked like it might be out the window, and the Peanut could be coming early. While this felt sudden, it also didn’t feel shocking, or sad, or too scary.

I went off for my blood tests and came back down to the maternity unit for a fetal electrocardiogram to get a solid reading of the Peanut’s heart. I was left in a room with a monitor beeping away beside me and the Peanut’s rhythmic galloping heart beat to keep me company. I was instructed to push a button whenever the Peanut made her presence known.

She must have been asleep because her heart rate stayed quite steady with just the one rolling kick which cause a spike in her heart rate. Alarmed, I tried to calm my own breathing.

When the midwife came back in it turns out she wanted to see this kind of activity and after giving me a glass of icy water, she let me know if the Peanut didn’t start moving soon I would be there for another hour.

I gulped the water and willed the Peanut to get moving. Within 10 minutes or so she had kicked a few more times, resulting in a number of spikes, which kept the midwife happy, and after two hours at the hospital, I could finally go home.

I left the hospital wondering whether Mr. Million and I would be back again in a few days, hospital bag in tow.

After an afternoon of waiting for a call – without any anxiety, just a healthy sense of irony at the fact my maternity leave had only just begun – I called the hospital to discover at this point my blood results looked fine. They mentioned there was more than one test to be done on them, but no need to book an induction just yet. I have another appointment to see them next week, and hopefully these itchy feet stay just as they are, and we can expect the Peanut a little closer to her due date.

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