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. 💕

Thomas loves his playtime!

http://youtu.be/Fl78V0BGJQk

Yesterday Thomas had loads of fun playing with rice! He was more interested in listening to the sound of the rice being poured in than playing with it although he did manage to get rice everywhere which was great fun!  The sounds he makes in the video are a new expression for him. It’s adorable to listen to.

The last two days Thomas seems to be much more content. I really hope that this continues because he seems so happy. We’re not sure whether it’s because he’s on an antibiotic, the viral bug has vacated or the change in the new Neocate formula but I’m just so very thankful to have some really good days with Thomas. 

While he has been feeling better, he has been happy to play in his chair again and it has been exciting for me to be able to introduce some tactile sensory play. There are so many things I’ve been keen to do with Thomas and now seems like an ideal time while he is up to it. As you all know, it has been a bumpy last two months so it is such a delight to have our happy little boy back. I have noticed he has more energy and all he wants to do is play, chat, cuddle, and smile! One thing that is tricky is the feeding, but we are easing him back into this.

Today, as a family, we had our very first outing to an event. This is such a huge deal because we need to be organised and Thomas needs to be feeling up to it. Up until now, he has had the occasional quick trip out to the supermarket, or mall. It takes a lot of effort because it is about keeping him comfortable and calm. Going out to an event such as a show is a huge sensory overload for Thomas. As a parent of a child with an NG tube, I have noticed the stares. I’m not bothered by it because I understand that it stems from curiosity or concern. It’s just interesting how different the stares are from the ones we received pre-NG tube days. The stare is not like the friendly smile we used to get and now more so a direct, serious or concerned looking stare. It comes from a variety of people of all ages. I find this a bit oddly. But really, I honestly don’t care. I’m super proud of my boy and I think him the most beautiful child with the biggest heart. We are so proud of how he coped today on a big outing.



Life with Thomas

I am thankful to everyone who reads my blog that has offered kind thoughts, love and support. I know that the blog is an important tool for keeping family and friends informed and to connect with people from around the world who are either years ahead in the unique experience of raising a child with complex needs or maybe only recently introduced to it. I am no expert on every child, only my own son.

I really wasn’t sure whether to write about such a sad, and sensitive, and private part of our journey re: the Advance Care Plan post, but I feel it is important to share so to educate and make people aware of all facets of our journey. I wrote the post so to share my feelings on the matter.

Because Thomas has been unwell for the last month or more, and with winter coming up, it would be an appropriate time, the Pediatrician felt, for us to discuss an Advance Care Plan should Thomas’ health deteriorate. 

Currently Thomas is on the mend. He has recently started a new medication to treat his chronic constipation and consequently faecal impaction, with Movicol. He is on a week of increased dosage to flush everything out. He was very blocked up! To the point that the Pediatrician could feel it upon physical examination and when examined, Thomas’ dystonic episodes occurred which now tells us that his dystonia was fuelled by the pain and discomfort of the constipation. We are now on day 2 of 7 of the flush and it is definitely working!!!! Because of this Thomas has really bounced back to himself, mostly, which includes playing in his sensory room more often, sleeping more, eating without dystonic episodes and chattier and smilier. We are so relieved and happy to see him getting back to himself again. I understand now that he must have been in a great deal of pain for quite some time. 

Although Thomas is on the mend, we did have a little scare last night where we spent many hours in ED. All is well now. He had an NG feed and had a little vomit afterwards. He seemed to be choking a little bit. He had laboured breathing and seemed more limp than the usual. I was advised to take his NG tube out because I was not able to aspirate from his tummy and to take him to ED to have a new one put in as well as check his chest for aspirated fluids. He had an X-ray which came back fine. A new, much longer NG tube was put in and Thomas needed to be monitored for an NG feed. He seemed fine, although distressed by the other crying children and poking and prodding which infuriated his dystonia! We think the reason we were not able to aspirate fluid from his tummy, is because the tube must have been slightly dislodged from the vomiting. I was only drawing air out even though he’d just been fed. In theory I should have been able to draw out a little of what he just ate. 

Sorry if this is too much info! It is a bit yicky sounding but it is part of our feeding routine. The reason for drawing a little fluid from the tummy is to always check the NG tube is in the correct place in the tummy. Once fluid is drawn from a syringe from an opening of the tube, you then squirt a little onto a pH testing paper that tells you if it is okay to go ahead and feed or not. The photo where I am holding an end is the end that sits in the tummy. If you have any questions or want to learn more about it please feel free to ask. I am comfortable talking about it. The goal now is to teach other family members who are keen to learn how. 





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.

Feeding plan update

We had Thomas’ meeting on my 30th birthday. It was bittersweet really. Needed time to digest things although I admit that I had a feeling it was coming.

The ‘feeding plan’ meeting was a discussion around the pros and cons of different kinds of feeding tubes that, according to Thomas’ paediatrician, he will highly likely need extra assistance in the ways of a feeding tube in the next 6 – 12 months. They wanted to ensure that we were aware of the different kinds of feeding tubes so that if we decide on a particular one, that some of them require a lengthy waiting time. We will need to make a decision on whether we want a Peg tube as opposed to the NG tube and if so, decide within the next few weeks so that we are on the waiting list as the Peg tube requires surgery. It is a straight forward procedure and is reversible and if in 8 months time when Thomas is next up on the list for the surgery and he does not need it, then we can say “no thanks.”

At the moment, Thomas is being carefully tracked for his weight and height and he is plotting along the graph (for corrected age) just in there but if he starts to dip down then we will need to supplement with the feeding tube so that he gets enough calories so that he can continue to grow and have energy. My job is to try and fill him up as much as I can but he doesn’t tend to eat much anyway!

As a parent, I feel it to be my responsibility to nurture my child and to need the assistance of a feeding tube to do so is such a hard decision to make because although I’m sure it is for the best, it is letting go and accepting that I can’t do it on my own. It feels like I’ve failed to provide for my child. I never thought that when my first child was 1 that I would be researching different feeding tubes. I spent my birthday feeling pretty lowly. I bounced back the next day like I always do. My husband was really supportive and my mum and dad rang and we talked. I think that it is really important to have family and friends to talk to because although they may/may not be in your shoes, they are experiencing it with you along the way.

Feeding challenges

Wee update: Had a phone call the other day from the audiologist to say that although Thomas did well in the tests, due to his needs, he needs an additional test called CAEP (cortical auditory evoked potentials) to measure electrical responses in the auditory cortex. (Yes, I had to google that!) This type of test is similar to an EEG where they use probes to measure the activity. It measures whether specific sounds are being processed in that part of the brain. Interesting…

Also, we were not meant to see his paediatrician till March but she wants to have a meeting next week with us as well as the SLT, VNT and dietitian to discuss a ‘feeding plan’. I don’t know what this means yet, bit nervous because maybe they may suggest an NG tube, we don’t know?

I have worked so hard to be able to feed Thomas from the breast (in terms of fluid) and it is a great comfort for him as well as really nutritional. We have tried so many bottle teats and not succeeded and the cup feeding is ever so slowly being introduced. Yes, after nearly a year I finally got the ok to feed him from a cup. Picture below. It is see through so I can have more control over how much I give him and the material is soft enough so that I can squeeze it to gently mould to his lips.

Thomas is just over 7 kg and nearly 70cm in length. From what I understand, children with challenges similar to Thomas often struggle with putting on and maintaining their weight. Thomas, also, unfortunately cannot have any diary too which rules out a few fattening up tricks. I feel the feeding to be an important focus for Thomas to ensure that he has enough calories to not only grow but also have the stamina to be able to make physical progress in therapy.

With the cup feeding, Thomas is loving the water but I must admit, most of it is ending up all down his neck and front. I have to be very careful to control the amount of water as it moves so fast that Thomas does not have a fast enough reaction time to swallow so occasionally coughs. This is a concern and of course he is not getting enough fluid this way to satisfy so I am a bit worried about the summer and keeping him hydrated.

Will post an update following our meeting at the hospital during the week.