“I don’t know how you cope…”

I get this all the time, from well meaning people.. ‘I don’t know how you cope’… ‘I couldn’t cope as well as you’.. It’s meant as a compliment, and I generally react as if I have taken it that way. I know it is meant to be nice, meant to be supportive.

What people don’t seem to understand is how telling the parent of a child with additional needs that ‘you don’t know how they cope’ gives the impression that our lives are purely about ‘coping’.

‘I couldn’t cope as well as you’, how do you know that for sure? Unless you have experienced something you cannot say you wouldn’t be able to cope. Upon receiving a diagnosis, whether that diagnosis be something as common as eczema, asthma, or something like spina bifida, you will always have that worry. That fear that you won’t cope. In reality, it isn’t about ‘coping’. It is purely about love. I know I speak for all parents (I hope!) when I say, we all have one thing in common; we all love our children unconditionally.

For you, that may mean you take them to the playground in the rain because they asked you to, it may be cutting the crusts off their sandwich, or reading them that bedtime story ‘just one more time’ even though you are shattered beyond a level you would have thought possible.

For me, that means I look after Harvey’s extra needs. I do things others don’t have to do, so that I can keep him healthy. I bring him to countless hospital appointments, and when he is an inpatient I sleep in a chair.

You see, we all have things we do to care for our children’s individual needs. The individual acts I do may be different, but overall I am just like you.

If I saw your child demand crusts off their sandwich, or the blue cup, or any number of things that your child needs to feel safe, secure, loved and listened to, I wouldn’t say to you ‘I don’t know how you cope’. You are being a parent, as am I.

It isn’t always easy, but that is the same for everyone. We all have moments where we struggle. Children like to push our buttons! For me though, I don’t feel like parenting Harvey is purely about coping. I enjoy being his mother. I would literally kiss the ground that child rolls on, he is my everything. There are days when I may just cope, but overall I relish in the role that is being his mammy.

There is a big vote happening soon here in Ireland. The vote to repeal the 8th amendment from our constitution. I am not going to tell you how you should vote, nor am I telling you how I am voting. Those who know me well already know how I will be voting but that isn’t why I bring this up. Regardless of whether it is repealed or not, women in Ireland will have abortion raised by their maternity consultant if they receive a ‘severe’ prenatal diagnosis of their unborn baby. Not everyone has had it brought up, but I, and many like me, have had it discussed at the time of diagnosis.

Whether it is repealed or not, if you receive a diagnosis I just urge you to not make any quick decisions. It is a very overwhelming and slightly terrifying position to be in for a lot of parents to be. Get on to support groups and get to know the people living the lives. I bet you at least half of them at one point in their lives thought they wouldn’t be able to ‘cope’.

Information given out by consultants is always very glass half empty. They have to give the worst case scenario, which is why abortion may seem like it is in the best interest of the child, so they don’t ‘suffer’. Amongst the debates that have happened over the last while I have had people say that Harvey suffered. Whether he did, or did not, isn’t the point. We all have moments throughout our life where we suffer. Many of us have had broken bones, surgeries, lost loved ones etc. Yes we suffered, but that doesn’t mean that is all we experience in our lives. The same goes for Harvey, and many children and adults with disabilities. They have had times that were less pleasant than others, times where they are in pain, times where they suffer. That’s life. Overall, Harvey is a very happy boy, and I am sure he will be a very happy man.

“Life is not the way it is supposed to be.. It’s the way it is. The way we cope with it, is what makes the difference.”

Time for an Update :)

Well it has been a while! Just figured it was time to sit down and reflect on the last 6 months. We have had a lot of ups and a few downs, but Harvey is still kicking ass every day!

When I last wrote a piece, it was about my struggles with Harvey’s feeding, the good news is he is officially OFF his tube feeds, and has been since November. It has been very hard, only a few weeks ago he was still the same weight he was back in December. He still can’t handle much foods that aren’t fully smooth, but yet he can demolish solid chocolate! (kids ‘eh?) He is finally gaining now but it has been such a struggle to get here, he is on a calorie additive in his food as well as a heap of dairy free butter to help him pile on the pounds, he also needs to take a daily vitamin to make sure that he is getting what he needs to nutritionally, and I am so proud to say he is up 200g just this last week!

It was looking so likely he would end up needing a G-Tube put in place (tube directly to the stomach rather than through the nose) but I really wanted to avoid that at all costs purely for the fact that I know how incredibly hard it can be to wean kids off a tube when they are dependent on it. I have to say, I worked my ass off to get to this point. I would have to weigh all his food, and work out the calories per gram, then weigh what (if any) was left to work out the calories consumed. I kept a very anal notebook of everything he ate and drank with the amount of calories consumed so I could make sure he was taking what he needed for weight gain, and if he was behind I could supplement by making the last meal of the day a higher calorie amount. He still doesn’t eat very large portions but he is healthy, happy, and finally climbing the growth chart. He is currently just at 8kg now so has just about tripled his birth weight.

Back in November we feared Harvey was due to have a very major surgery called a Chiari Decompression. Harvey has Arnold Chiari Malformation, another thing that is fairly common with people who have Spina Bifida. This is where the cerebellum at the back of the brain is pulled downwards and can become compressed, the surgery basically would have involved removing some of the top vertebrae to take the pressure off the back of the brain. Chiari can come with some horrible symptoms, some of which include pain, headaches, nausea, vomiting, dizziness, numbness in the hands, sleep apnea etc. to name but a few! Harvey’s when it was originally measure had a deviation of 19mm, and when he was last admitted it had progressed to 25mm which is fairly substantial for a child of his size. His is being pulled down to about C3 on the spine.

I brought Harvey in to see a neurosurgical registrar twice to explain my concerns, he wasn’t eating at all, he was gagging to the point of vomiting, he wasn’t sleeping, he was cranky and I had noticed the CSF was building in his back where his closure was done when he was born. Day 1-I was sent home. Two days later I brought him back and saw the same man, I insisted unless he would sign something stating he was 100% happy that nothing was wrong with Harvey’s shunt I wanted a CT scan done, less than an hour later I was already back from the CT. His shunt appeared to be working fine, he shrugged at me to say ‘I told you so’. I was still not satisfied. I came home, got on to one of the Spina Bifida nurses that looks after Harvey and the next day (Thursday) I was in to meet the consultant. He referred him for admission the following Monday for an MRI as it is easier to get an MRI done while admitted. He was admitted and after 3 failed attempts at an MRI under sedation they booked him in for one under general anesthetic and while he was under the GA they brought him to theatre to place an ICP (inter cranial pressure) monitor-this is placed through the skull but not inside the brain and it measures the amount of pressure in the brain to make sure he wasn’t getting high pressure spikes to fully rule out the possibility of a problem with the shunt. They left this in for 3 days and were satisfied he wasn’t having too high a pressure.

Once the shunt was ruled out they brought up the Chiari Decompression, this isn’t a surgery they do if it can be avoided. There were mixed opinions between the Neurosurgical consultants about if they should go ahead with the surgery. Chiari can cause problems with coordination and they felt, as well as a speech and language therapist felt, that this may be the cause of him not wanting to feed. The SALT thought his coordination was off when drinking from a bottle, he was sent for a videofluoroscopy to have a look at his swallowing. Thankfully his coordination was fine, but he has a delayed swallow and does better on thickened fluids so we use a thickener in all his drinks to help him. This scan was the deciding factor to NOT go ahead with the surgery and that day, after a nine day stay, we got home. He still may need the decompression at some point, but hopefully by then he will be bigger and stronger (but unfortunately, also more aware).

Another bit of not so good news we received came in the form of an orthopedic diagnosis. We knew from when Harvey was still in my belly, that he had Scoliosis. His Ortho consultant never mentioned it so we presumed it wasn’t too bad. He recently changed to a new consultant, and unfortunately we found out it is a lot worse than we knew. He will definitely need surgery but can’t have it until he is about 3-4 years old because before that he would be too small. In the mean time, his lungs are being crushed by his ribs. Our hope is that with correct seating (6 months of waiting and we are finally getting his high chair next week) as well as a DMO suit to help give extra support, we can slow the progression. His consultant said that unfortunately for Harvey it is a matter of life and death so if this doesn’t work we will have to try a Halo Gravity Traction. This is sort of like a metal halo around his head, which will essentially be attached to a hoist on his wheelchair to help keep him sitting up and not curving too badly. If that doesn’t work….It has to work….

It’s very upsetting, he is such a smiley, happy, funny, boy. To me, he deserves the world, I just hope that one day he will get a break. He doesn’t deserve this, none of our kids do. It is a kind of helpless feeling, it is literally out of my hands, Thankfully he is one incredibly strong little man, so I know he will come through all the hard times and end up just a stronger person because of it all.

Anyway, now on to the good stuff! Well the biggest development is Harvey can now officially sit independently, so that was sooner than expected! He still falls after a few seconds but you would too if you couldn’t feel below the waist, he is supporting himself entirely by using his arms so as soon as he sees something he wants to grab he falls, it’s very cute. He will learn after enough falls that he needs to keep one hand down for support (I hope!).

He also seems to be getting the hang of his little bumbo wheelchair we were kindly given by a fellow mother of a child with Spina Bifida! We literally cannot wait for him to be zipping around in it. It is so amazing to watch.

We see, and feel him getting stronger (and cheekier!) day by day. The boy they thought may never take his first breath, oh how wrong they were. I am back in to the Coombe to see the consultant who looked after my care when I was pregnant with Harvey so she can see how far he has come. Any excuse to show him off!

Another bit of news was this Mother’s Day he was featured in the Sunday World newspaper highlighting the work Temple Street do for kids like Harvey. We are all quick to point out the flaws in our hospitals, and yes I am not naive, they are flawed, but without Temple Street he may not be here today, and for that I am forever grateful.

Anyway, that’s just a bit of an update, sorry about my over use of punctuation, it is currently Late O’Clock and I am sleepy but daddy is out tonight so mammy is on duty and must remain awake!

They said he wouldn’t,

But he did.

They said he couldn’t,

But he can.

They said he won’t,

But he will.

Why Won’t he Eat?!

As I sit here, with Harvey hooked up to his food pump I can’t help but think about everything we have gone through with his feeding…

Before Harvey was born I had planned on being an extended breast feeder, not because I think that formula is “bad” it’s just knowing Harvey would be kept in an incubator at the start of his life, I longed for the bond that breastfeeding creates. Harvey however had other plans.

For the first two weeks of his life Harvey was fed by an NG tube (nasogastric- tube up his nose and down in to his belly). While he was being fed this way I was using a breast pump every three hours to keep my supply up and to give him in his tube. It was tiring work but I loved knowing I was providing him with his food, and I still credit breast milk to how fast he recovered from his surgery! 

When it came time to wean him off the tube I was so nervous, but also extremely excited. He instantly latched and showed no signs of any issues. I was breastfeeding whenever I was given the option by the nurses and in the mean time Harvey was still getting the majority of his food from the tube. Then a day came where they stopped the food pump and allowed me feed on demand. I was so happy! It went so well and he seemed so content, but the next day didn’t go as well. He would be feeding well over an hour and as soon as I put him down he would scream for more. I knew it was hunger by the way he would relatch when given the chance. The worst thing I probably did was I started giving him a top up with a bottle of the milk I pumped. I just needed to know he would be full enough to sleep so I could leave him to get food. 

It went on like this until we got home and I thought nothing of it. When we got home I was breastfeeding on demand, it was exhausting but I loved it. Being home with my baby and being able to really bond. I was still having to give a top up with a bottle or he literally would have spent 24 hours a day feeding, sometimes he would only need 10mls, other times he would take a lot more. 

I eventually ran out of all the milk that I brought home from the hospital, I still had my rented pump so I started pumping again. To my shock I was only producing maybe 30mls in total after doing both sides. I couldn’t understand why my supply was so low but I figured that explained why he was always hungry when I would stop feeding. 

I have since discovered he has an upper lip tie, and even on the bottle his top lip doesn’t latch around the teat properly. Any medical person I have said this to has dismissed it, but I know that was the problem. 

I tried everything to get my milk supply back; pumping every chance I got, power pumping, taking domperidone, baked and devoured lactation cookies, I took fenugreek, drank lactation tea, skin to skin, hand expressed when done at the pump etc but nothing worked. I was only producing enough for 1 bottle a day, so I went to visit my gp. I was told that I was stressing myself out and I should just stop altogether. I wanted to burst out and cry right then and there. I didn’t know what to do. I just really enjoyed the closeness breastfeeding gave me and hated the idea that would be going, even to this day I think about trying to relactate and get my supply back but I know realistically it won’t work. 

I cried the first time I gave Harvey formula. Full on cried. I almost felt like I was failing him. Had I known what was in store for us down the line I would have relished the fact that he was guzzling his milk, no matter what kind of milk it was!

I started him on aptamil, not for any particular reason, just seemed ok. He was doing great for a while, I even googled “is it ok to let a six week old drink six ounce bottles?” Of course it is, you feed a baby as much as they want.

Then the reflux set in at about 8-9 weeks. He would scream through his bottles and flat out refuse to drink for me. I was so stressed I would often find myself in floods of tears just willing him to drink. When he was 11 weeks he went in to hospital for a bilateral hernia repair in his groin, while there I spoke to the nurses about his reflux and they gave me gaviscon for him. Only a few days later I went and got his prescribed medication to neutralize the stomach acid so he would be in less pain. This helped a little. But then we noticed blood in his stool. We discovered that often means there is a cows milk protein intolerance, so I went back to the gp and asked for a specialist formula. She gave us a prescription for Nutramigen Lipil, this isn’t completely dairy free but the milk protein is extensively hydrolyzed meaning it is easily absorbed so for babies who are just sensitive to milk protein it is usually tolerated. Oh, but it tastes disgusting!

After three weeks of him refusing to drink it I gave in. I wanted to know was taste the issue so I gave him his regular aptamill again and he downed it! So I figured we would leave him on it unless bad symptoms came back. They did. So we had someone recommend trying a lactose free formula, this seemed to do the job! He was loving it and doing really well, until the blood came back. 

We were a bit concerned because we thought he may have an infection so brought him to A&E. The doctor there agreed it sounded like CMPI (cows milk protein intolerance) and gave me a prescription for nutramigen puramino, this is a completely milk free formula made with Amino Acids. 

He had only started this formula a few days previous to his first dietician appointment, with the public dietician. He was referred by the PHN because his growth was slowing. She put him on infantrini peptisorb, this is a high calorie feed but it’s only hydrolyzed milk protein. He seemed to tolerate it well and liked it better than the nutramigen puramino so we did a full swap. For a while he seemed like he was thriving. 

He still had the odd vomit so we started adding a thickener to his feed, little did we know that thickener would end up being the reason he was getting sick! 

At six months we introduced spoon feeds, I had wanted to do baby led weaning but because of his neck problem and he doesn’t have a specialist high chair yet to seat him safely so we had to go for puree. He loved it, I would let him feed himself with the spoon at the start so he could enjoy it. Time went by and his spoon feeds never really increased, he would often gag to the point he would get sick so I had to watch him closely and stop when he wanted me to. 

It went on like this for a while, and then about two months ago Harvey’s feeding started to decline. Over the space of a week his bottles went from 22oz, to 18, to 15, to 12, and then he was refusing almost everything. It was very hot at the time and I was very concerned about dehydration. We had an appointment with his dietician in his early intervention  centre and she weighed him to find he had lost weight. 

I brought him to A&E the next day and was sent home because he wasn’t bad enough to admit but I was told to start aptamil pepti because we thought maybe the taste of the infantrini was the issue, I was told to update his paediatrician that Friday. With no signs of improvement on the new formula I told his paediatrician I wanted him admitted because I was worried. They brought him in and we were trained on how to pass an NG tube and then he was sent home, we were none the wiser to why he wasn’t eating. 

He has been put back on medication for reflux at my suggestion in case he is having silent reflux. He has always had eczema, and has been waking screaming in pain at night so I asked to start giving the formula Neocate, this is completely dairy free. I am really hoping this will work because if not they want to look at doing surgery to put a PEG in, this is basically a valve in the stomach to use for feeding rather than the tube in the nose.

He is still reliant on the tube for feeding but I am hopeful that after a couple weeks on the neocate he should improve. If not I really don’t know what we can do…

A Bit of a Backstory

Well here I am, I kept telling myself I would write a blog and now that I’m doing it I don’t know where to start…

Back in January myself and my now fiance (congratulations to me!) had a beautiful baby boy, Harvey. When I was 11 weeks pregnant we found out that our baby would be born with spina bifida. For those of you that don’t know what spina bifida is, it’s a neural tube defect. 

Basically, in the reeeeally early days of pregnancy (before you even pee on a stick!) When the spine is forming it doesn’t fuse shut properly and it allows some of the nerve ending from the spine to come out. This can happen at any point along the spine and function of any or all limbs below that point can be affected. In Harvey’s case it means he has no lower limb function. 

Along with spina bifida he also has hydrocephalus, this is extremely common with people who have spina bifida. It’s a build up of cerebral spinal fluid in the ventricles of the brain, often managed by a vp shunt. A vp shunt is inserted in to the brain so that as the fluid builds and creates pressure on the  brain it drains the fluid back down in to the stomach. Harvey got his, which we have named Hunt the Shunt, when he was five months old. Some people get them earlier, some get them later, and a lucky few never end up needing one. Shunts are serious business! An infection or blockage can happen at any time so you always need to be on the ball.

He also has bilateral talipes, also known as clubfoot. This affects the position of his feet, basically they were turned inwards and couldn’t flex. After a series of casts and special boots Harvey wears at night, you would never know how they previously looked.

So those three things were all diagnosed at this scan. It is safe to say we were devastated. Having previously suffered from a miscarriage I can tell you the grief we felt upon hearing that was on a par. We drove home in tears. Our main discussion prior to the diagnosis having been about if I would have a girl to do ballet or if it would be a boy to race motorbikes with his daddy. We faced the news our child would never walk. It’s a different kind of grief but it is grief all the same. 

I went home and got on the internet and did my research and spoke to parents whose children have SB (spina bifida) and saw their beautiful, and happy children. Suddenly it didn’t seem so scary. 

Further on in the pregnancy we found out his head was bent backwards and we were told there was concern over his airway. They couldn’t know if it had formed properly and if he had any breathing issues at birth they weren’t sure if they would be able to get a tube down. They told me all this only one week before I was due to go in for my c-section. At 37 weeks pregnant we had to discuss how far we would want them to go to keep Harvey alive. Our paediatrician told us he thought it was morally wrong to put in a trachea. We told him we didn’t give a shit what he thought. They were to do everything medically possible to save our baby boy if the time came!

15th January 2016 at 11.18am weighing a petite 5pounds and 9oz, Harvey was born, breathing fine. The name Harvey means “ready for battle” and f#&k me was he ready for battle! It was hard seeing him in his incubator. I feared for the road ahead. If I had been able to see how he would turn out I never would have been so worried. 

At four days old Harvey had his first surgery, to close up his back to prevent infection and thus began our road to getting home. It was tough, on all of us, but at 19 days old our little warrior came home. 

9 months on and my god, he is the smiliest baby, he is the best thing that has ever happened to me and I wouldn’t change him for the world. He has shown me what true strength is and taught me how to stand up and fight. He has also shown me what it is to have unconditional love. He is my hero. 

There will be more to come, but right now my hero needs me!