I realize that Brett and I haven’t had a lot of time to talk to anyone about what is going on and many of you are aware that Foster is in the hospital and I’m sure are concerned about what is going on. So I’m finally making some time now to update on the Foster situation.
Our sweet baby boy is already over 3 weeks old. Foster decided to arrive a little earlier then we had originally planned. Luckily, I had an inkling that he might arrive the week that he did and since Brett was going to be up north that week for work, we asked his Mom if she would be able to fly out a little early so that someone could be with Clay should I go into labour.
At 3:00am on November 2nd, I woke up after feeling the first contraction. Of course, I immediately pulled out my contraction timer and contraction 2 was only 4 minutes behind. At 4:00am I texted Brett that I was headed off to the Hospital. I arrived at the labour and delivery triage and thought, hopefully they’ll tell me this is false labour. Nope, I was 7cm dilated and baby was on its way, I was going to have to do this alone. Foster was born quickly, before 7:00am and weighed only 4 lbs 13 oz. Luckily Brett was able to get back to Calgary later that day at around dinner time.
Foster and I spent the first 6 days in the NICU due to his size. He was a healthy baby but on the small side and this lack of body fat meant he had a little less energy then most babies and needed a little extra help to get his Bilirubin levels down. No big deal and we were allowed to go home after a week.
Unfortunately, after only a couple days at home I started to notice that Foster was having periodic episodes that resembled what I imagined a seizure to look like. These events were happening between 10 – 12 times a day. His seizures always happen from sleep and seizures we’ve learnt can make you very sleepy. At this time Foster was only waking up to have a seizure and was otherwise asleep. I brought him into the doctor’s office and just as I finished describing to the doctor what was happening, he started to have a seizure right in front of her and she was able to see the entire thing. She made a referral for him to be seen by the Pediatrics Neurology team at the Children’s Hospital and that is currently where we still are today.
Poor little guy has had every test imaginable, multiple MRI’s, CT scan, EEG monitoring, lumbar puncture to test spinal fluid, every blood test available and we still cannot say what is going on with little Foster. We do have lots of reassuring results, MRI looks normal, CT scan is normal, no infections, EEG was abnormal but that is the seizure activity. Still waiting on many of the metabolic and genetics tests but those can take a couple months to get the results from. Sometimes no news is good news. There is definitely a possibility that we will not find out what is causing his seizures and in that case the goal is just to treat them. That is really where we stand right now, trying to find the right medication and the right dose that can treat his seizures without sedating him. He did have an event two Sunday’s ago where he had 5 seizures within the hour (which is too many, any more then 3 in the hour and the doctors intervene with stronger medication to attempt to stop the seizure immediately.) Because the seizures were coming back to back, the Doctors had to use two of these stronger medications to stop them. And while this did seem to stop his seizures for the next 3 days, he also didn’t wake up for 2 and a half days. So now we’re trying to find that right balance. He is still having seizures, however he’s definitely having less with about 3 a day vs. 12 a day. Which is great but obviously the dose isn’t where we need it to be yet. With his seizures happening less frequently throughout the day, he also has more energy and is actually awake for periods of time during the days and nights which is wonderful and we love seeing his big bright eyes open and present and looking around.
The other on-going issue that prevents Foster from being able to go home is feeding. Following his event two Sundays ago he wasn’t alert enough to be able to feed. Because of this, the doctors had to insert two feeding tubes. One into his stomach and one just below his stomach. One of these tubes has since been removed however Foster is still being fed through the tube into his stomach. This is because the doctors felt that even though he was more alert, he might not be alert enough to swallow properly and protect his airways. We are in the gradual process now of getting Foster back to regular feeds. This is a surprisingly long process but he is making progress. He was previously being fed a continuous drip 24 hours a day. Then he progressed to bolus feeds every 2 hours and then bolus feeds every 3 hours. These are larger volumes which are consumed quicker through the tube, more similar to bottle feeding or breastfeeding. Now we’re starting to introduce a bottle and he’s working with someone to ensure that he’s sucking correctly and alert enough to bring the milk to the back of his mouth, swallow and breath etc. He’s only had one bottle feed so far and is otherwise still being fed through the tube.
So that is the Foster update. It’s been a long three weeks since Foster was born and it feels like we have days of progress followed by days of regression but I think overall things definitely are progressing well, a lot of really great specialists are working on finding a treatment for him. The goal is definitely to leave the hospital with a treatment that will allow him to live a regular daily life without any seizures. However, we’re told that because of how little he is and how quickly he will grow over the next year and throughout childhood, there will definitely be times when he will outgrow his dose and at those times we will start to see his seizures breaking through again. He will be followed by the neurology team here at the Children’s Hospital though throughout his childhood with regular appointments.
We don’t know how much longer Foster will be here at the Children’s Hospital for just yet. We have been very lucky to have Brett’s Mom stay at our house the last three weeks since Foster was born and I believe she will be heading back to Ontario on Thursday of this week. Since someone has to be with Foster all the time, Brett and I will be starting to alternate days this week, he’s home with Clay today and I’m at the hospital with Foster and we’ll switch each day. Luckily Brett still has some vacation time to use and hopefully we can bring Foster home sooner rather then later and have some time for him and Clayton to get to know each other and settle into normal daily life.