The first few posts have all been like story. Memories of what happened, recorded as honestly as possible but with the obvious benefit of hindsight. From now, posts will be more immediate, more 'in the moment' and possibly more rash. I may regret what I write a little more, but I will always try and be honest as to how I feel.
So, here goes....
Today is not a good day.
I can't tell you why exactly. I woke up feeling a weight of sadness in my chest. Sadness for the situation, and knowing what is to come.
The baby is kicking away in my stomach, quite oblivious to what is ahead for him. The operations, the hospital visits, the prodding and the poking. And I feel sorry for him because it has to be done, and it's undoubtably for the best. But that doesn't mean I want it for him.
I also know for sure that it is far better that all of the procedures happen while he is a baby. I imagine trying to explain what is going to happen to my 3 year old; independent, aware of and interested in everything. Of course it's better it happens when the baby is small. But that does not mean I want it for him.
I'm worried about what will happen in the hours after he is here. How will he feed? Bottle? Syringe? Tube?
Will we be separated? I know that he may need to go to Special Care Baby Unit so they can help with feeding. Will he know that he's away from us? Will he wonder where we are?
My rational brain knows that the midwives, the cleft team and everyone else will make sure he is fed. That if he does need to go to SCBU he won't be away from us. We'll be there, next to him, fighting everything alongside him so he will never be alone. But that doesn't mean I want it for him.
Finally I feel guilty, because I'm now 38 weeks pregnant and desperate for him to be here. I'm desperate to see him and be able to do something for him. The feeling of impotence I've had for the last 18 weeks is becoming unbearable. I am a do-er, and not being able to do anything is crippling. But with that is the knowledge that by wishing him here earlier I am wishing the operations, the hospital visits, the prodding and the poking on him all the sooner. Any that's not fair. He seem's to be happy where he is, even if I am not.
After the initial diagnosis I became very, very good at compartmentalising everything. I was able to have frequent, detailed conversations with family and friends about the cleft. What it was, what it would look like, what operations he will need and how I was absolutely fine with it. I would do all of that without actually thinking about what was coming. I would go through the conversation by rote time and time again, without ever actually dealing with it. I thought that by acting like I was fine, I would be fine. I knew deep down that it doesn't work like that, and when I was on my own, with the world locked out, I would cry and allow myself to not be ok for a while.
Days like this have become, thankfully, much less frequent as the weeks have passed, and for the most part I can honestly say I've become ok with it. Or, if not ok with it, used to it. Able to live with it rather than around it. That said, I reserve the right to revert to a bad day like today.
If you're reading this as a parent dealing with a new diagnoses, please don't be alarmed. You will have times like this, but by talking to someone about it you can work through the sadness and back towards being ok again. Talk to your partner, your parents, a friend, anyone. If you are carrying the baby yourself remember that pregnancy hormones are a bloody nuisance and have a way of distorting the magnitude of what you are feeling. That doesn't mean that what you are feeling is wrong, or that you are overreacting, but it does mean that the immediate pain and panic will pass and rational you will be back soon.
In the mean time you have my permission to grab a cup of tea (in leiu of Gin) and a packet of biscuits and to put your feet up. Homes Under the Hammer starts soon. Take your time to relax and be ok again, and know that however alone you may feel that you are not. There is huge support out there for when you need it.
Much love.
I'm off in search of cookies.
Wednesday 27 July 2016
Saturday 16 July 2016
Mantra
Within two hours of leaving Birmingham Women's Hospital I had received a call from the Cleft Team at Birmingham Children's Hospital (BCH) and an appointment was made for our local Cleft Nurse to visit us at home in two days time.
The first thing the Nurse, Jane*, said when she sat down was this, and I want this to be a mantra to all cleft families out there.
"This is not your fault. This happened probably before you found out you were pregnant. This is nothing to do with anything you have done. It wasn't because you forgot to take your vitamins, or a cheeky drink at Christmas. Nothing you have done has caused this. It has just happened, and we are here to help you."
I would urge anyone affected by a Cleft lip and/or palate to have that stored somewhere. Keep it on your phone. Frame it. Hell, tattoo it on your eyelids. Just remember it. There are times when you will still blame yourself. Of course you do. As a parent you are 50% of the child's DNA. Half of him is you and all of you is in him. As a mother, you are given the responsibility of carrying this cluster of cells and protecting them.... and frankly you feel like you have fucked it up. There are times when you have to blame something or someone, but deep in your mind and in your heart remember that you DID NOT CAUSE THIS.
Jane was brilliant. She explained who she was and her role, as well as all of the people at BCH who dealt with clefts. She talked us through what would happen once the baby was here, from labour and birth through to future operations. She answered all of our questions (including my stupid ones) clearly and kindly and showed us lots of photographs of children who had been treated by the team. She gave us the details of a wonderful company in Shrewsbury who offer free 4d scans to families with a cleft diagnosis (more on that in a future post) and was generally just lovely and reassuring. Finally she introduced us to CLAPA, and the mine of information and network of support that they offer.
We had a long talk about feeding; the options and the possible problems. We were told not to worry about feeding, that was her job and she would be there to support us. We were given two special bottles to take to the hospital with us, and we would be given more when she visited me in hospital after the baby was born.
When she left we all felt a lot more informed and reassured to know that the support was there. For the first time we had a glimmer of 'it will be ok' that has stayed with us for the most part, although wont pretend we have always felt it. What we did know was that it was the end of the beginning, and we just had to keep putting one foot in front of the other to get where we needed to be. Wherever the hell that was.
__________________________________________________________________________
*If you're reading this and your name isn't Jane, please accept my humble apologies. In my defence i hadn't slept properly in a week, managed to get tonsillitis since visiting BWH and have had severe baby brain in the intervening 16 weeks!
The first thing the Nurse, Jane*, said when she sat down was this, and I want this to be a mantra to all cleft families out there.
"This is not your fault. This happened probably before you found out you were pregnant. This is nothing to do with anything you have done. It wasn't because you forgot to take your vitamins, or a cheeky drink at Christmas. Nothing you have done has caused this. It has just happened, and we are here to help you."
I would urge anyone affected by a Cleft lip and/or palate to have that stored somewhere. Keep it on your phone. Frame it. Hell, tattoo it on your eyelids. Just remember it. There are times when you will still blame yourself. Of course you do. As a parent you are 50% of the child's DNA. Half of him is you and all of you is in him. As a mother, you are given the responsibility of carrying this cluster of cells and protecting them.... and frankly you feel like you have fucked it up. There are times when you have to blame something or someone, but deep in your mind and in your heart remember that you DID NOT CAUSE THIS.
Jane was brilliant. She explained who she was and her role, as well as all of the people at BCH who dealt with clefts. She talked us through what would happen once the baby was here, from labour and birth through to future operations. She answered all of our questions (including my stupid ones) clearly and kindly and showed us lots of photographs of children who had been treated by the team. She gave us the details of a wonderful company in Shrewsbury who offer free 4d scans to families with a cleft diagnosis (more on that in a future post) and was generally just lovely and reassuring. Finally she introduced us to CLAPA, and the mine of information and network of support that they offer.
We had a long talk about feeding; the options and the possible problems. We were told not to worry about feeding, that was her job and she would be there to support us. We were given two special bottles to take to the hospital with us, and we would be given more when she visited me in hospital after the baby was born.
When she left we all felt a lot more informed and reassured to know that the support was there. For the first time we had a glimmer of 'it will be ok' that has stayed with us for the most part, although wont pretend we have always felt it. What we did know was that it was the end of the beginning, and we just had to keep putting one foot in front of the other to get where we needed to be. Wherever the hell that was.
__________________________________________________________________________
*If you're reading this and your name isn't Jane, please accept my humble apologies. In my defence i hadn't slept properly in a week, managed to get tonsillitis since visiting BWH and have had severe baby brain in the intervening 16 weeks!
Monday 11 July 2016
Confirmation
Tuesday finally dawned after the longest weekend of my life. I dont know how much I slept that night, but I know it wasn't much. I couldn't so much as look at food without feeling sick, and when I thought too much about anything at all I would have to run to the sink to dry wretch and sob.
The appointment was at lunchtime so I spent the morning in a haze. My inlaws arrived so my mother in law could come with us, and my father in law could take my son out for the day with my dad. We all sat around trying to act as normal as possible, as much for our own sanity as anything else. I tried, but I wasn't coping at all well. It was cold outside, the wind was bitter, but i kept finding excuses to go and sit in the garden away from everyone else.
Finally, after what seemed like days, it was time to go.
My mum drove us all the hour or so to the hospital. Oddly, as we headed for the motorway, my nausea lifted. We were doing something. I wasn't just sat at home staring at a wall. We were doing a something, a positive action rather than passive thought. It was amazing what a difference that made. I remember even laughing on the way there. Aside from feeling groggy with a sore throat (which I put down as the result of near constant sobbing) it was the most normal I had felt in nearly a week.
All that changed in the waiting room. The longer I sat there staring at the TV, the worse I felt. Sick. Shaky. Light headed. The minutes dragged by, and every time one of the staff came into the waiting room I jumped about a foot in the air. Several times I nearly passed out. I was sat doing nothing but thinking and thinking was not a good thing.
We knew the Doctors were running behind, but we didn't really mind. If they were running behind it probably meant that somebody had had some devastating news to deal with, and although we didn't know what was in store for us, we took some comfort in knowing that we would be looked after and given time.
Eventually, it was our turn. We filed into the scanning room with the consultant and stared at the screen. The consultant was lovely and explained what she was looking at, but she didn't need to. I saw the cleft as plain as day. She did lots of measurements and looked in detail at every part of the baby, measuring sizes and spaces and God knows what else.
Just as she finished we asked if she could tell us what we were having. A week ago we didn't want to know, but now we were desperate. We wanted to build a personality for our child, and not have them defined by what lay ahead regardless of what it was. She had a look and there was no doubt.
A boy. Another little boy.
We were delighted to know. It didn't matter to us either way but we knew and it made all the difference.
After wiping the conductive gel off my stomach (how does that stuff get EVERYWHERE?) we were shown into another room and left for a few minutes while the Doctor colated everything. She came in with a midwife and went through what she had found.
The diagnoses of a cleft lip was confirmed, and a cleft palate was probable although always difficult to confirm.
It was a unilateral cleft on the left hand side, and unilateral clefts are less likely to be connected to chromosome abnormalities. This coupled with the fact that all other measurements were completely normal meant that she thought that there was a less than 0.5% chance of a chromosome abnormality. The risk to the baby of a miscarriage through amniocentesis is 1%. The decision was made for us. If we were to have the amniocentesis test and it caused a miscarriage, the likelihood is we would have miscarried a healthy baby.
I must stress again here that this was our decision. I would never ever judge anyone for making a different decision.
It was the best outcome we could have hoped for. We knew they were never going to say 100% that everything was going to be ok. We knew that they would never 100% rule out chromosomal issues, but if you had asked me that morning I would have bitten your hand off for 0.5%.
The Doctor and Midwife explained everything clearly, answered all of our questions and gave us all the time and space we needed. They fully explained that amniocentesis proceedure and, although we declined, said we could contact them if we changed our mind. They arranged for the cleft team from Birmingham Children's Hospital to make contact with us but otherwise all other antenatal care and delivery could take place at our local hospital.
We left with a numb relief and started phoning our immediate family to tell them the news.
We knew we had a long way to go, but knowing what we were facing gave us a starting point. We hadn't come to terms with it yet, not by a long way, but by knowing what we were dealing with meant we could work towards accepting it and moving forward. I was 21 + 2. What a difference a week makes.
The appointment was at lunchtime so I spent the morning in a haze. My inlaws arrived so my mother in law could come with us, and my father in law could take my son out for the day with my dad. We all sat around trying to act as normal as possible, as much for our own sanity as anything else. I tried, but I wasn't coping at all well. It was cold outside, the wind was bitter, but i kept finding excuses to go and sit in the garden away from everyone else.
Finally, after what seemed like days, it was time to go.
My mum drove us all the hour or so to the hospital. Oddly, as we headed for the motorway, my nausea lifted. We were doing something. I wasn't just sat at home staring at a wall. We were doing a something, a positive action rather than passive thought. It was amazing what a difference that made. I remember even laughing on the way there. Aside from feeling groggy with a sore throat (which I put down as the result of near constant sobbing) it was the most normal I had felt in nearly a week.
All that changed in the waiting room. The longer I sat there staring at the TV, the worse I felt. Sick. Shaky. Light headed. The minutes dragged by, and every time one of the staff came into the waiting room I jumped about a foot in the air. Several times I nearly passed out. I was sat doing nothing but thinking and thinking was not a good thing.
We knew the Doctors were running behind, but we didn't really mind. If they were running behind it probably meant that somebody had had some devastating news to deal with, and although we didn't know what was in store for us, we took some comfort in knowing that we would be looked after and given time.
Eventually, it was our turn. We filed into the scanning room with the consultant and stared at the screen. The consultant was lovely and explained what she was looking at, but she didn't need to. I saw the cleft as plain as day. She did lots of measurements and looked in detail at every part of the baby, measuring sizes and spaces and God knows what else.
Just as she finished we asked if she could tell us what we were having. A week ago we didn't want to know, but now we were desperate. We wanted to build a personality for our child, and not have them defined by what lay ahead regardless of what it was. She had a look and there was no doubt.
A boy. Another little boy.
We were delighted to know. It didn't matter to us either way but we knew and it made all the difference.
After wiping the conductive gel off my stomach (how does that stuff get EVERYWHERE?) we were shown into another room and left for a few minutes while the Doctor colated everything. She came in with a midwife and went through what she had found.
The diagnoses of a cleft lip was confirmed, and a cleft palate was probable although always difficult to confirm.
It was a unilateral cleft on the left hand side, and unilateral clefts are less likely to be connected to chromosome abnormalities. This coupled with the fact that all other measurements were completely normal meant that she thought that there was a less than 0.5% chance of a chromosome abnormality. The risk to the baby of a miscarriage through amniocentesis is 1%. The decision was made for us. If we were to have the amniocentesis test and it caused a miscarriage, the likelihood is we would have miscarried a healthy baby.
I must stress again here that this was our decision. I would never ever judge anyone for making a different decision.
It was the best outcome we could have hoped for. We knew they were never going to say 100% that everything was going to be ok. We knew that they would never 100% rule out chromosomal issues, but if you had asked me that morning I would have bitten your hand off for 0.5%.
The Doctor and Midwife explained everything clearly, answered all of our questions and gave us all the time and space we needed. They fully explained that amniocentesis proceedure and, although we declined, said we could contact them if we changed our mind. They arranged for the cleft team from Birmingham Children's Hospital to make contact with us but otherwise all other antenatal care and delivery could take place at our local hospital.
We left with a numb relief and started phoning our immediate family to tell them the news.
We knew we had a long way to go, but knowing what we were facing gave us a starting point. We hadn't come to terms with it yet, not by a long way, but by knowing what we were dealing with meant we could work towards accepting it and moving forward. I was 21 + 2. What a difference a week makes.
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