Overdue Update

It has been a very long time since we’ve updated our blog! And while there’s nothing big to write about, we still want to lay out some things that have happened over the last number of months... mostly for our own family’s sake. (It's become a cohesive and helpful place to look back on and remember what happened when, particularly from a medical perspective. There's been a number of times during a medical appointment when I pulled out my phone to find an answer to a question about the medical history of one of the triplets...) 

September, 2020

On November 25th 2019, Malachi’s tracheostomy stoma was closed via surgery. He did very well, and didn't even need oxygen immediately after his surgery. The stitches were dissolvable and we were so thankful that everything healed up nicely with time. This time around, he was a bit more upset going into surgery, as he knew what was going on this time around (or at least knew he didn’t want to be in the operating room!) As parents, it’s always hard leave your little one sedated in the doctor’s hands, but we also had some mixed emotions! On one hand, we’d prayed for this day many times... the “end” of the tracheostomy journey. On the other hand, it was “final” in that the trach tube could no longer go back in (unless of course, through another surgery). We prayed fervently that this was truly the right move and not too early for him... that he would no longer need a trach to be ventilated when he got sick.

Moving forward, Malachi does still at times require oxygen. We tape oxygen tubing to his face so it sits under his nose and flows into his nostrils. Usually, he needs oxygen when he is sick, but there have been times when we don’t really know why he needs it... He sleeps with an oxygen saturation monitor (oximeter) on which alarms loudly when his blood oxygen levels dip below 90%, so that as parents we can wake up and set him up with some nasal oxygen. (During the day he doesn’t wear the monitor. If he’s sick or if he looks a little pale or blue around the lips, we hook him up to his monitor and “spot check” his oxygen levels to see if he needs nasal oxygen). He sleeps right across the hallway from our room, and the oximeter cord is long enough that we can place the oximeter right in our room. We can read the numbers from our bed! It’s been a great setup for us, because we haven’t had nurses in our home since the pandemic started in March.

Since having his trach stoma closed in November of 2019, Malachi has had a handful of sicknesses. A few times we ended up at the doctor’s office or the ER with breathing concerns. It’s always a little complicated when we take him in, because of his medical background and conditions. Since Malachi has chronic lung disease, his breathing is quickly impacted by even a fever. He had a number of ear infections this past winter, and as a result was fevering (and when one triplet gets sick, they all do!) When he fevers, he works hard to breathe and this often causes doctors to take chest x-rays to check for pneumonia as well (which is of course, fairly dangerous for Malachi to have and the doctors want to catch any pneumonia quickly!) But the tricky thing is, Malachi’s chest x-rays are hard to read because they look “cloudy” in multiple places from the permanent damage that is there... but “cloudy” can also indicate mucous or a pneumonia or an infection! It’s hard for doctors who don’t know him well to diagnose him based on x-rays and they always want to err on the side of caution to keep him safe, which we can certainly appreciate! At the same time, we know him best and sometimes make the call to hold off on antibiotics... because antibiotics aren’t great on one’s system and can “throw him for a loop” in other ways (particularly digestive ways). The ER or hospital ward can also give him some breathing medications that we cannot give at home (although we have 3 types of puffers at home), and higher oxygen levels than we are “allowed” to administer at home (although we would and have in the case of an emergency). 

This photo is from December, 2019 (by Consider It Timeless Photography)

In February 2020, the triplets were struggling with ear infections and fevers and had some difficulties breathing. We had a doctor’s appointment and got some backup antibiotics in case the infections weren’t viral and didn’t clear up on their own. The infections seemed to go away on their own but in a few weeks were back. Taylor started getting a little croupy again so we ended up in the ER once with her for a few hours. Then Malachi’s fevers just kept staying, even after starting antibiotics. We were triaged quickly when the little guy was needing oxygen and had no energy. After chest x-rays, the doctor suspected a pneumonia that needed different antibiotics. A few days later, Malachi still wasn’t improving so we were able to get an appointment with his medical team. They took bloodwork and changed the antibiotics again. However, this time suspected a potential UTI on top of the ear infection, as we had noted some new symptoms at home, including yellowing skin. We went home from clinic and later that evening received a phone call to come back to the ER right away and that we would be admitted due to strange bloodwork results. Malachi was jaundiced, had high liver enzyme levels, and a number of other high levels (if your medically savvy, these included high AST, ALT, GGT, bilirubin, and ALK). The first thing the doctors wondered about were gallstones, with a potential blockage causing an infection. Malachi had imaging done (including an x-ray, ultrasound, and sedated MRI) but no conclusive answers were found. We didn’t know it at the time, but the doctors were concerned about cancer and doing a number of tests for that as well. After 3 days in the hospital with IV antibiotics and a number of tests, the doctors were left scratching their heads a little but pleased that Malachi’s concerning high numbers were coming down in a slow but steady course. They suspect that he either had a strange virus, or that he had a gallstone that was stuck, got infected, but dislodged and passed through on its own... before the testing even started. In the days and weeks that followed we felt unsettled to not have conclusive answers. Even today, we sometimes ask one another, "Do you think he looks a little yellow/jaundiced?" because we are worried it will happen again. 

Thankfully, that strange sickness Malachi had at the end of February and into the beginning of March was the last sickness he has had! That is one blessing for our family which has (in part) come from the pandemic. Social isolation has protected the triplets from getting sick and has given us a beautiful long stretch out of the hospital!

April, 2020

That being said, social isolation has been something we have been "practicing" ever since the triplets were born as micropreemies with compromised immune systems and chronic lung disease. We have been protecting them from germs that are "too big" for them ever since they were born! Hand washing, hand sanitizer, avoiding crowds, not allowing sick persons (or even family members of a sick person) in our home... these have been a normal part of our life for the last number of years! We are always conscious of touching elevator buttons or doorknobs, can hear someone cough a mile away, and will hand sanitize after a handshake or a high five. It was (and still is) our hope and prayer that over time we can ease out of these germ restrictions as Malachi's lungs get bigger (and the new healthy lung tissue becomes "stronger"  than the permanently damaged lungs). However, Covid-19 is a virus that we are taking seriously, especially since it is a respiratory virus. We are certainly very concerned about what the virus could do to any of the triplets. And so, we have continued to be committed to protecting our triplets from germs. We are so grateful to all of those who are also taking precautions to limit the spread of the virus in order to protect the vulnerable populations, like our micropreemies. We pray that the Father in heaven will soon end this pandemic. While much more could be said on this issue, we will leave it at that.

In other updates, the triplets still have a number of appointments and therapists working with them, due to the fact that micropreemie babies often have many challenges that follow them for years to come. A big follow-up clinic for Malachi has been with cardiology. Malachi has mild congenital heart disease. This often is the case for little ones with chronic lung disease. As a tiny baby, Malachi's lungs were working very hard to breathe, which put strain on his heart and caused physical changes to take place in his heart. We are grateful that the changes have always been mild, but he is still being monitored by the cardiology team. A recent change in the last year or so, has been that Malachi's heart rate has started dipping periodically at night while he's sleeping. These dips are called bradychardias. His oximeter alarms when his heart rate dips too low and wakes us up at night. We've seen the number dip as low as 46 beats per minute, which is low for a 3-year-old. The doctors have ordered a number of tests including holters, ECGs, and echocardiograms. The tests have shown nothing "surprising" in that while his heart isn't typical, there doesn't seem to be any different factors at play. We feel a little nervous because these episodes only happen every month or two... and when they do happen, they happen in clusters every night for about a week. Each time it happens, the numbers seem to dip lower as well. Malachi can't really communicate what he's feeling when it dips (plus, he's sleeping through it), so we are continuing to monitor him for other symptoms like dizziness or shortness of breath.  

Liam 

Malachi is also followed by occupational therapy and physiotherapy, mainly for his oral eating and drinking skills, as well as some other areas like his gross motor skills. There are some concerns with ligament laxity due to developmental coordination delay syndrome. This syndrome is nothing new... it basically means he is developmentally delayed from all the medical difficulties he struggled with in the first few years of his life. His muscles were/are also delayed, ever since he was unable to really move, sit-up, roll-over, etc. because his body was using all his energy to breathe. The "behind" muscles compounded with Malachi's growth spurts have put strain on his ligaments. We notice he has difficulty walking up stairs, running, jumping, and climbing... and he also falls very often. At this time we are also seeing an osteopath and have been referred to an orthopedic specialist. 

Taylor with her new glasses

As for eating and drinking, Malachi has really improved and we have not used his mickey g-tube since June of 2020! We are SO grateful that Malachi has been able to maintain his weight by orally eating and drinking, even though it has been a struggle... Malachi does not really enjoy eating like his siblings do. He takes a long time to eat and a LOT of encouragement and guidance. He gags and vomits at least once a week still. If we let him eat what he wanted, he would basically starve himself. It's frustrating because if we pressure him too much, he balks and resists. At the same time, we want him to be able to function without his feeding tube, even though it has certainly been a life-saving blessing for him! We see the long-term goal, but of course we cannot expect him to see it yet. So it is a day by day struggle. We are encouraged by the complex care who are blown away by his progress. We hear often that he is doing far better than expected in the eating and drinking area... for what he has been through. 

However, we do need him to start gaining weight, or he'll need to go back to the g-tube soon. We have multiple appointments and weight check-ins with his dietician and complex care team to monitor all of this. We are continuing to try pick high calorie foods for him and cheering him on!

Malachi

The triplets are still also monitored developmentally. At the beginning of the year, the triplets "outgrew" the neonatal followup clinic, which follows premature children until the age of 3 (the triplets turned three in November of 2019, but weren't "technically" three (aka. three years old corrected) until February of 2020. Generally, junior kindergarten picks up where the clinic leaves off, but our three are not going to JK (they would have started in September) for a number of reasons. Liam and Taylor performed well on their last visit and are loosely followed by some of the professionals that still follow Malachi. Malachi has been referred to a developmental pediatrician who will follow him more closely and address some delays we have been noticing. A speech therapist is also still working with Malachi. In all of these appointments and monitoring, it has been both a blessing and a disadvantage to have three little ones of the same age... We are constantly comparing, yet kids grow and develop at different speeds and in different ways. It's often hard when to know if something is a concern or just a difference in pace of learning. We never want to pressure our children or rush to a specialist if we don't need to. At the same time, we know that they had a disadvantaged and rough start to life, and we want to provide all the resources we can to aid them in their development. We have said "no" to some services and "yes" to others, and are constantly assessing what is best for our children. But it's not easy, as every parent knows!

Of course, we can't leave our sweet and spunky Hazel out of this post! She has grown from an easygoing and content baby into a busy and sassy one year old! She is not quite walking yet at 14 months, but walks along furniture and by pushing walk-behind toys. She climbs into all our cupboards and empties them. She beelines for the bathroom whenever someone accidentally leaves the door open because she loves to play in the toilet water (ew!) She loves to make everyone laugh and loves to shriek. She also loves to whack the triplets and say, "NO! Uh uh!" and then gently stroke their heads and say, "Dentle..." Hazel also has quite a few words, like Mommy/Mom (she loves to shout this one all day and every day), Dada, peas (please), nigh-night, bye-bye, banana, all done, Taya (Taylor), Leah (Liam), and hiiiii. She loves her soother, loves her bed, and loves to eat. She also loves music and can sing quite a bit of Jesus Loves Me and Twinkle Twinkle Little Star. She is such a joy to our family!

Hazel

In all things, we are so grateful for our Heavenly Father's blessings in our lives. We often reflect on how grateful we are to have four beautiful children, despite the medical journey they've been on! We know that God works all things for the good of those who love Him, but we also know that doesn't always mean long life, good health, or physical blessings. We continue to give Him all praise and honour for the miracles He has worked in our family's lives. To Him be the glory in all situations of life!