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.
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.
- 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?
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.
- 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.