I remember

I remember and I also don’t remember much from when we were first told that our son had suffered a bleed in the brain. I reflect on it often when thinking about where Thomas is now from his very first beginnings that started with the brain hemorrhage. I was home alone, in Thomas’ bedroom when I took the call. My husband was at work. I called him immediately. After I called him, I cried.

I remember being in shock. Holding back tears. Confusion. I prepared for the reality that Thomas would die, or remain in a severe comatose like state. The specialists were thrown into fairly unknown territory needing to call on Starship for advise. Thomas was only 10 days old when I was first introduced to epilepsy when seizures became as regular as every few minutes.

I learnt how to do CARES (temperature check, nappy change, wipe nose, mouth and eyes) through the incubator holes. The sounds of the many different monitors. All of which terrified me. I watched my son, motionless. Intubated because the medications slowed his breathing. Pumping milk became a regular slot in the day that led to me storing unused milk because Thomas was no longer tolerating feeds. I remember feeling a mix of hope and a sense of loss as to whether the milk would ever be needed again.

Nurses became friends. Friends kept a distance. Doctors rounds were a regular event each day, not to be missed.

I visited Google regularly in desperation for information on anything related to brain injuries, specifically a Grade iii hemorrhage. Not much, it turned out at the time.

I remember seeing quite a few babies come and go through the NICU and thinking, will we be able to leave with our son one day?

When Thomas started to move a limb and open his eyes. I remember these moments too. I felt like I was witnessing a real miracle. That the seizure medications worked and the seizures ceased.

Thomas was very drowsy for quite some time and he would need time to heal and adjust. That from now on, he was experiencing his world, post injury, for the first time. Celebrating that he could pee again. Tolerate feeds. Move out of the intensive unit. Able to regulate his temperature. Learn to breastfeed. I remember thinking how amazing it is that he would wake and cry. That he could communicate by crying. After so much silence, it was lovely to hear him cry!

Thomas came home after 7 weeks in the NICU. He was born 6 weeks early. We were told he would come home on a feeding tube. Instead, he came home fully breastfed and this continued up until 13 months old. We were told that Thomas might have cerebral palsy and this I had accepted. I was just so thankful that he was still with us.

Thomas is nearing 3 years old and gearing up for kindergarten. Thomas has come a long way since then. He has had a lot of challenges, which still continue every day. But, he is a mostly happy boy who gives and receives love. He is able to communicate in his own way the basic needs like being tired, hungry, thirsty, bored, scared, happy, angry and excited. He smiles, giggles and gives kisses. He comprehends words and follows instructions. He finds ways to move around on his back using his legs and feet. He has a cheeky personality and he loves attention. He loves music and playing.

If there is one thing that every parent/caregiver/family member/friend should know about brain injuries in babies is that every brain injury is different regardless of the grade (1-4) and it’s resulting prognosis. It takes time, a lot of time. Time to grieve, to find one’s way through acceptance and that the grieving cycle runs on repeat every time there is a new diagnosis, event or trigger. It can be very lonely at times simply because it is not a common event and when it does happen, you realize that you may or may not know anything about it or anyone who can walk/talk you through it. Again, there is no way to know how things will unfold. We were told again and again to ‘wait and see’. That was pretty much it, besides having Home Care nurses on board, a developmental therapist and to expect seizures. Having a really understanding GP helped get us fast tracked through certain scenarios. There are plenty of Facebook support groups that are private. There are a lot of blogs out there too. Just find the ones that you can relate to.

It takes courage to reach out when you so desperately want others to reach you. 💕

Downhill, fast.

Things went downhill, and fast. Since my last blog post everything was ticking along quite smoothly. Thomas was enjoying his paddling pool, was getting pretty interactive and his therapy sessions were going really well. He had been having a tough time with 4 top teeth coming through but once they had broken through, he still seemed not quite himself. He began having the odd seizure and seemed more irritable throughout the day. We made contact with his neurologist who then doubled his seizure medication. The seizures seemed to ease off but Thomas did not settle within himself.

Thomas has always had involuntary muscle contractions but they seemed more pronounced and often. His involuntary movements include his neck repeatedly twisting to the right, his jaw clamps shut and his arms and legs stiffen and he sometimes holds his breath for 1-2 seconds during these episodes. He would do this during breastfeeding and it wasn’t that he was going through a biting phase, it was involuntary. He would be latched, suckling away and then, without warning, his body would tighten and yes, his jaw would clamp shut tightly. I persisted for a while through this and every time I breastfed, I was extremely nervous and kept my finger on the ready. In the end, it got to the point where he was not getting a decent feed because he kept clamping so much which led to our first hospital stay for dehydration.

Thomas miraculously took to the bottle that night in hospital so we were discharged the next day due to this. Now I realise that he was desperate and that bottle feeding long term was a difficult, tiring act for Thomas. He only lasted less than two days getting sufficient fluid from a bottle and became irritable again refusing solids, bottle, and cup. I knew we only had one option left. I really didn’t want it and I wasn’t ready either. But we had no choice in the end.

We were then admitted again a week later. This time for dehydration and a ‘plan’ to address the lack of options for getting fluid into Thomas. The plan was to have Thomas get an NG (nasal gastric) tube put in. This was purely for fluids if he refused cup or bottle. We were still feeding him puréed solids and the yummy tasting medicines orally. In order to be discharged from hospital I was required to observe x amount of feeds and be observed for x amount of feeds as well as give x amount of feeds independently with no supervision. Turns out it is quite easy to do. Changing the plaster on his face to hold the tube in place is not easy. The fear of him pulling it out by accident  will never go away. The NG tube is a short term plan until Thomas gets a G Tube which requires surgery. This will no doubt happen within the next 6 months. 

Since this discharge Thomas seems to have got worse. He has been having the odd seizure, and loads of dystonia episodes. For the last few weeks, it has been really rough. He has been crying or screaming most of the day. Hence why I haven’t written in a loonnnnggg time. I have been putting updates on his Facebook page but it has occurred to me that I haven’t on the blog. With all the crying and screaming, Thomas stopped showing interest in his sensory room or play in general, he was waking in the night stiffening and only wanted to be held. We grew desperate waiting to hear back from the Neurologist who is a very busy lady understandably, so, we went to the GP. She was fantastic! She got on the phone straight to the neurologist with the okay to start a new medicine. It is a strong muscle relaxant, Baclofen. He has been on it for over a week now and it does seem that he is having less dystonic episodes. However, he is still crying and screaming in pain. I believe it is constipation, with his low muscle tone, he struggles to move his bowels. He will spend a whole day pushing and nothing comes out. I really feel for him. I know he is in a great deal of discomfort and pain so I am giving him Pamol and Lactulose and lots of fluids. We are seeing his Pediatrician tomorrow to hopefully look at a stronger medicine to treat the chronic constipation.

I really hope that we are able to find out what it is for sure that is causing Thomas so much pain (even though I think I know, it is not confirmed!). I just want my boy to be comfortable and happy again.

Hello Bottom Teeth!

Teething…not what I had in mind. I am happy to report that I am pretty clueless within this area having not been through it before. Remember, I’m a first time mummy. So the teething thing right?! Well, the erupting stage has been going on now for well over a week and I can see the tip of the teeth, some nice pearly whites peeking out but they have sort of stalled for a bit just literally broken through the gum sitting there not doing much at all at the moment. They’re blimey sharp things and luckily no injuries while breastfeeding…yet! I live in fear of the event of a nibble or bite. Please no! Anyway, I thought the pearly whites would have fully come through by now but still waiting. I can be patient. For now…

So after Thomas had his cold and went off solids altogether and lost a bit of weight leaving me with a constant worry over his weight dropping quite low on the graphs and requiring regular monitoring, yet again with the teething he has been fussy with his solids. I have read and heard that this is normal for a decrease in appetite during teething so that’s fine that this is a normal reaction but still, it is a worry. He has managed to gain a little over 100 grams over a two week period where he hasn’t been taking in much solids so I am thankful he has not lost anymore weight.

With the teething, comes anxiety and stress for Thomas because it isn’t a pleasant experience for anyone but unfortunately he has been having more tightenings. We saw his Pediatric Neurologist and discussed this with her and it has been suggested that it is more likely a movement disorder (as opposed to seizures) due to his spasticity or dystonia (stiffness of muscles) and that if this disturbs his sleep to the point of making him miserable, then we can start looking at using medicines to relax his muscles however side effects include drowsiness which we are not keen on of course. For now, Thomas seems content so we will not go down that pathway yet. The reason we know it is not seizures is because Thomas had an EEG while having the tightenings and it did not appear abnormal.

On this subject, Thomas’ EEG results were clear. This means that they were unable to detect the hypsarrhythmia brain waves indicative of infantile spasms. Of course, he still had abnormal brain activity but this we already know and Thomas is medicated for this and it appears for now that the medication is working. We are most fortunate that we have a form of medicine that works. I know that this is not always the case for everybody. It is just not fair that these children suffer. It is a hard journey in life. But we have to keep on keeping on for the children.

No news on the orthopaedic referral. Still waiting. Thomas is still a champ in his seating system for feeding. I finally signed up to the CP Society. It’s been on my ‘To Do List’ for so long. I hear from many parents that it is a great support and resource. Go check it out at: http://www.cerebralpalsy.org.nz/

Here are some beautiful pics of Thomas enjoying the Hammock at BLENNZ campus. It was quite interesting to see how Thomas would respond. At first he was a little anxious and I think he seemed uneasy because it was a new and different experience. He was very smart and put his fingers through the netting to hold on. He liked to be pushed quite swiftly. After a little while, Thomas appeared quite alert and stimulated by the experience.

Ah-choo, Cough, Splutter, and Spew Ew!

Yip the title sums up the past week with a new, most unpleasant milestone achieved.

Thomas’ first official cold. 9 months old. Not bad really.

I have to say that I fully jinxed it too. I was literally having a conversation with Joe a few days before it all started saying how we are fortunate that Thomas hasn’t had a cold yet considering that he has immuno-suppression in all. Bugger!

I think that the last few posts Thomas hasn’t had a great time with his eczema and constipation so it’s just been an add on with the addition of the cold.

I don’t know what it’s like to have a typical developing, healthy child with a cold but I’m sure it’s not quite the same experience. I’m sure that it’s the same in the sense that it can make any bubba upset (including parents!) and most especially clingy needing lots of comfort like cuddles. Thomas has certainly been wanting more cuddles.

A plain old cold is a dangerous threat for Thomas due to his immuno-suppression. He’s been put on antibiotics as a safety precaution even though he doesn’t have a fever. It’s really scary because if it develops into a fever we have to take him straight to hospital. For the first time ever, Joe and I kept Thomas in our bed so that we could keep a close eye on him. Just for one night. I didn’t sleep. Thomas was twitching in his sleep and kicking me non-stop! Another scary side effect of Thomas being sick is that his tightenings have come back. Thomas had these tightenings when he was having his infantile spasms. They look like exaggerated startle reflexes although Thomas cannot control when they come on and they are frightening to observe. Thomas also gets distressed when they come on. His whole body stiffens while his legs and arms extend outwards. When he stiffens it can be for 1 – 3 seconds and during this time he holds his breath. We were able to see his pediatrician and she was able to observe this. We believe that it is more likely a movement disorder. He has another EEG coming up soon in October to check for infantile spasms. Because Thomas is not feeling so good, his eczema and constipation have flared up and the tightenings have been waking him or stopping him from drifting to sleep. His whole body tone has really fluctuated this week between really floppy to stiff.

As I write the above I am aware of how it may all sound but for me the purpose is in tracking and recording how Thomas is developing along his journey. Some of it good, some of it not so good.

His pediatrician is referring Thomas to a dermatologist just to see if there is anything more we can do for his skin. The skin test showed no food allergies. He has also been referred to have another xray sooner than planned. He is supposed to be having 6 monthly hip/pelvis xrays for subluxation. He isn’t due to have another till next year sometime but the pediatrician is concerned about his right hip. His legs both point one direction and lately they have not been straight. Sometimes his legs do scissor and boy are they tight. Makes for very difficult nappy changes!

Now, something positive!

Thomas is able to hold onto the shakers and sometimes he gets them to his mouth. It is the most amazing thing ever! At Conductive Education, his teacher gave him two shakers to hold. Of course I thought he’d drop them straight away like he normally does. But no! Joe and I looked at each other in utter surprise but also glee. Thomas held onto them for quite some time. So at 9 months, Thomas can hold onto a shaker and sometimes bring it to his mouth. We went and bought some nice bright coloured shakers and I have been getting Thomas to play with them every day. He is now quite content to play with his shakers. For me, the most awesome part of all this is the cognitive development that is happening. It is most magical to see how many steps it takes to achieve something such as this. Such as; Thomas is aware of the shakers being there in his hands, he knows to hold onto them which requires a tight grasp, he knows to move them in a specific direction to his mouth, he knows that his mouth will make contact with the shakers and where his mouth is. It blows my mind! I’m so proud of Thomas. I know that he’s been so determined to independently get something or anything to his mouth for oral stimulation. And of course, some pics of his awesome achievement.

More and more… referrals and medications!

I know that the last post I made was a wee while ago and that the busy-ness was overwhelming. Well, I don’t think it’s necessary for me to say in every post how busy we have been. It’s like that all the time now. I know that we all have our own busy lives to lead and it certainly makes the time fly too. I think that this ‘busy’ world I have been thrown into was not at all the sort of ‘busy’ I had dreamed, hoped, yearned for. I’m mostly accepting of it on a day where Thomas is stable “health wise” and is generally happy for most of the day. I only ever want for Thomas to be happy. I have accepted that we will have days or weeks that are really rough. 

This past week has been rough for Thomas and I. Not only was his sleeping all over the place for reasons for which I’m still unsure of but the week has ended with some new medications and more referrals. 

Thomas skipped his Conductive Education session on Monday because he was really grizzly. On Tuesday, Joe and I both went to the BLENNZ Homai Playgroup together. Although Thomas was a bit off still, he had a good session exploring different objects. He especially loved a medium sized, bright red, fluffy crab that vibrates when touched. He sat there in my lap, kind of semi grasping it (Go Thomas!) and seemed quite content. I will need to hunt down something similar like that. I will post a short clip of him with it shortly on his facebook page! 

Wednesday, Thomas’s VNT came with his new sleeping system to trial and it was immediately evident that the sleeping system was too big for Thomas. It is like a giant bean bag that molds a certain way to support Thomas to lie with correct posture while sleeping. Well, it swallowed him up! The VNT and I both agreed that it wasn’t right and perhaps when he’s bigger he can move into using this kind of sleeping system. This has become a big part of our world for Thomas – equipment. It’s about trialing equipment and finding what’s right for him. I find this process the hardest because there’s never any guarantee that a piece of equipment will work for Thomas and you end up spending a lot of time waiting for it too. We are still waiting for a seating/buggy system and a car seat. The seating/buggy system is the link below. We are really excited to be getting it in apparently less than 3 weeks!!!!! The car seat hasn’t been selected yet. The good news is that we can choose our own from Babyonthemove and once an application has been made, we may be waiting 3 months + Meanwhile Thomas’s current capsule seat is not giving him the support he needs and he is growing too long for it hence why the waiting game can be quite difficult!

http://shuttlediscovery.com/parents

Thomas did not go to BLENNZ on Friday, and instead we visited his GP. His eczema was proving difficult to manage with a really bad all over body mad flare up. He continued to be unsettled all week and I caught him straining to um, you know, make me a present hah! Well, after all that straining, nothing! He hadn’t gone for awhile so this led me to think maybe constipation or his lack of muscle strength to push? (cerebral palsy related) Well, we came back from the doctors on Friday with a plastic bag full of medication that included lactulose, antibiotics (just in case!), a new stronger ointment for the eczema plus some pinetarsol for the bath. So far the lactulose has helped big time. He is suddenly regular again. The ointment has eased his eczema too. The doctor thinks he needed something a bit greasier. She has made a referral for him to have an extensive skin test as well as see an eczema nurse specialist at Waitakere hospital. 

Thomas is also having a referral done to see a dietitian to ensure that he is eating enough because he is a little fella for his corrected and actual age. I believe that this might be due to his prematurity and having cerebral palsy. Thomas does seem to be eating fine with the solids but seeing a dietitian will be a good way to check that he’s getting enough or find ways to add fat into his diet if necessary. Our goal is to try and get him to feed from a bottle so I can have more than a few hours away for a break. This has proved tricky already. We went out and bought a bottle and the 0+ month teat flow was way too fast. We have since tried the Dr Browns as well and he managed to drink 40 mls and refused to have any more. At the time we didn’t know why but his spew about an hour or so later told us maybe his tummy didn’t agree with it.(Thomas very rarely spills) I also learned this week that the SLT can provide us with bottles for free for children like Thomas who struggle with feeding from a bottle. Who knew? His SLT is going to leave a few different brands with us to try out during the week. 

Today Thomas seems a bit chirpier as his skin looks to be clearing up and he is regular again. I knew that something was not right during the week because he wasn’t interested in his sensory room and was crying a lot. Even when held he was really upset. This was really distressing for me because I had been unwell with some viral thing that Joe brought home from work. It made me realise how hard it is when you’re unwell with an unwell bub. It’s not like I can call in sick! On that note, I’m feeling much better.

On the bottle.

As I look at my Thomas’s diary,  I can see that next week will be interesting. Yes, we have appointments everyday next week plus Thomas gets to see his ophthalmologist again. This is just a routine check up but Thomas has only seen the eye doctor once before when he was about 4 months old so it will be interesting to see if there is any developments/changes. 

I also had a very lovely phone call with the Parent2Parent support parent during the week and it was really great to talk to someone who completely understands. She gave me some really great advice so I am thankful for that. 🙂

Thomas playing in his play gym lying on the star pillow.

Spoonfuls of sugar

Drugs, drugs, drugs!

At first, the thought of taking Thomas home and being responsible for administering his medications was quite scary. He had spent a total of 7 weeks in NICU and I’d become used to the idea of NICU nurses taking care of this side of things. I was responsible for feeding him and CARES and that was pretty much it. So I was thankful when they weaned him off his anti convulsant while he was in NICU so that he could be closely monitored in a safe environment. The idea of weaning him off it at home was frightening so one less drug was a relief.

This is just the morning lot of meds alone!

Fast forward a few months and now preparing and administering drugs is a regular part of our routine. In fact, that’s usually how I start my mornings. Thomas wakes for his morning feed, nappy change and medications. He’s usually very good at taking his meds but as he progresses he is showing a distinct awareness of which ones he prefers (the sweet tasting ones of course!) and the ones he does not prefer whatsoever (mashed up pills mixed with water or expressed milk). We are now starting to see him try to spit it or gag it. 

Medication is very much a big part of our daily routine with me trying to ensure that it is prepared and administered routinely.I have become so used to it and it isn’t until a new drug is introduced that I get a little anxious. The anxiety for me is ensuring I give the correct amount and whether there are going to be side effects or interactions with other drugs. Side effects are an unfortunate thing but I’ve found that sometimes you have very little choice. 

Most recently, we have delved into using a range of sedatives such as Midazolam, Melatonin (blimey expensive non-subsidised!) and Chloral Hydrate. These, to me, are the scariest because, well, they sedate my wee man. Midazolam is now only used when Thomas has a seizure (infantile spasm seizure) lasting longer than 10 minutes. Melatonin was used to help Thomas drift off to sleep due to the sleep deprivation side effect of the Prednisone. Unfortunately, he would sleep from 20 minutes to 2 hours so it was not so good at ensuring Thomas remained asleep for an appropriate length of time so we moved onto something much, much stronger.Enter Chloral Hydrate. He needed to be hospitalised while they trialed dosage amounts and to ensure that he was monitored as Chloral Hydrate can slow the breathing down a little. Thomas responded well to the sedative and so we were able to take a little home to see him through for the week. Unfortunately, you can build an immunity to it so that story ended quickly. Thankfully, Thomas finished the Prednisone treatment and is now sleeping much better as you already know as per my last post. 🙂

Big picture wise, for us, at the moment, it is about managing Thomas’ seizures so that they do not cause him discomfort, anxiety or further cognitive delays/regressions. We want to make sure Thomas is comfortable and happy. 

Thomas working hard.