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!

Three 3-Year Olds, One 3-Month Old, and Upcoming Surgery

On November 9th, the triplets turned 3 years old! We had a wonderful time celebrating over a number of days with family and friends, as we reflected on God's goodness to us over the last three years.

We just wanted to give a quick little summary of each of our triplets' personalities (mostly for us to look back on in years to come!) and also ask for your prayers yet again as Malachi has another upcoming surgery on Monday November 25th. This time, he will be put under anesthesia in the OR to close his tracheostomy stoma (hole). He's booked for 90 minutes during which they will make a larger incision along his neck, move muscles and things back in place that were pushed aside during his original tracheotomy surgery, and then sew it back up along a neck crease. It's not just a stitch or two like we were originally expecting! But then, the doctors tell us it is nothing like some of the surgeries our triplets have had in the past so we should not be so stressed out! In any case, it is scary to send your child into the OR and we again pray that God will keep him safe and bless the surgery outcome. Yet again, we pray for good health until then so that he can indeed have this procedure done. Malachi still has a feeding tube, so this is likely not his last medical procedure, but we aren't sure what will happen down the road with that.

Now on to a little blurb about each of our triplets' personalities:

Liam:
This little man is the loudest and most "intense" of the triplets! He has the biggest emotions. He loves big too, giving lots of cuddles and kisses and randomly saying, "I love you Mommy" or "I love Daddy" out of the blue. He is generally quite easy-going. He knows his colours and his ABCs and loves to sing lots of songs. He loves to carry around little toys and things, whether in a little bag or his pockets or under the seat of his ride-on toy. His imagination is starting to take off which is so fun to see. He is starting to drive dinky cars and pretend little animals are walking around or eating things. It is fun to see his little brain imagining and playing and learning! He takes a little time to switch from one activity to the next and so he needs to be told what is happening next so that he can transition smoothly. Liam is also our biggest eater - he is the heaviest triplet at around 30 lbs and eats basically anything. He's the only triplet with straight hair and his loud belly laugh is so contagious! He is the least shy of the triplets and is quickly comfortable with new places. We love our rambunctious Liam!

Taylor:
Our girl is still sweet and feisty! She is clever and catches on to things quite quickly. She loves to learn and do crafts. She is a pretty particular and persistent little girl as she insists on having things a certain way. For example, her stuffed animals have to be arranged in the exact same way every naptime/ bedtime and we have to sing her the same songs in the same way each time! She knows her colours and ABCs just like Liam and loves to sing lots of songs too. Often one triplet will start singing a song and they will all join in. Taylor is often the ringleader for ideas and likes to tell her brothers what to do... but they don't always listen so she isn't exactly the leader of the three. She is also probably the most empathetic and nurturing. When Hazel cries, Taylor is quick to run and give her a soother or immediately yells, "Mommy! Hazel is crying!" even though Mommy is literally right there! All of the triplets are quite empathetic though, and give each other and Hazel kisses or hugs when someone is hurt or sad. It is adorable to watch. Taylor is our tallest triplet and close behind Liam in weight. She's not picky either (except for mushrooms and avocados, which we are still working on). She has gorgeous blonde curls that bounce when she moves and her little giggles are just adorable! She is very shy though, and takes a long time to warm up to new people. We love our happy Taylor!

Malachi:
Our youngest triplet is also still our sweet and stubborn little guy. He is the best of the three at playing independently in his own little world (although for the record they are all three not great at it and are almost always in each others' spaces and playing together). He knows his ABCs and lots of songs but is still working on his colours, although we don't suspect he is colour blind like his Daddy. He is rather stubborn and is the hardest to teach of the three. He is the only triplet who is not yet potty trained (part of that is for logistic reasons because he has so many appointments still and spends more time in the van than the other two triplets). He seems to love music a little more than the other two triplets (although they all love music), as he dances and sings with a lot of enthusiasm and hilarious expressions! He is also very tough and has a high pain tolerance (maybe from all that he has gone through and still goes through). He falls often as his balance is not quite as advanced as the other two triplets and rarely cries from pain. Malachi is still the lightest and the shortest of the three, and we are still feeding him through his g-tube at night, even though he is eating quite well during the day. His hospital team is still concerned about his weight, as he's around 25 lbs currently. We have to encourage him to eat enough and wait a long time at meals for him to finish. He's got a sparkle in his eye and with his curly hair and little grin, he melts our hearts! He is a bit shy, but warms up fairly easily to new people. He does not like going anywhere that feels like a doctor's office or hospital, and we don't blame him for that. We love our mischievous Malachi!

Hazel:
Well, we can't exactly leave out our sweet Hazel who turned 3 months old on the same day that the triplets turned 3 years old! She's the world's happiest and easiest baby and we all cannot get enough of her. She smiles all the time and has the sweetest baby giggles. She just learned to roll over from her belly to her back and the triplets all cheer and clap for her every time! She's got the best fan club! It is so different having a full-term baby with no health concerns and we love it. We don't need to constantly worry about her weight or her development or her breathing.. although we do tend to still worry about it all the time... I guess because we are programmed that way! We love our sweet Hazel!

What a privilege it is to be a parent and to watch your children grow and develop and learn right before your eyes. Toddlers say the most hilarious things and they have us laughing every day. At the same time it is of course very busy to have so many little feet running around and so many little hands making messes and so many little mouths chattering away all day! But we wouldn't have it any other way, and we thank God each day for his gifts to us! After all, they belong to Him!

Living Trach-Free!

Most of those who know us and follow us on social media have now heard the amazing news since our last blog post that Malachi is now trach-free!

Malachi with all his medical equipment the day before his scheduled bronchoscopy

The Big Day:

On September 20th, Malachi had a scheduled sedated bronchoscopy (scope into his airway). What a wide range of emotions we felt that day... starting with the van not starting early in the morning and Jodi needing to rush to the hospital somewhat late with a 2 year old and a 1 month old and a diaper bag and medical equipment including Malachi's suction machine, emergency go-bag, oxygen tanks, and oximeter machine and no stroller..!
(Side note: we never let the triplets walk in the hospital or touch anything like doorknobs or elevator buttons. We learned early on in the NICU that hospitals are rather dirty and a prime place to catch sicknesses from all the other sick patients! So Jodi was a sight carrying everything!)
Anyways, we arrived on time and Nathan managed to arrive on time as well with the fixed van and stroller. Malachi was a champ and was calm with Mommy in the OR as they put him to sleep. When the ENT surgeon finally came out, he told us that Malachi had some collapsing soft tissue like a flap covering a lot of his airway above the trach tube. This is common in children who have had trach surgery. He showed us photos (pretty cool) but we felt overwhelming disappointment... we thought this meant months more of waiting for an OR date and then an airway reconstruction surgery! But then the doctor continued by saying that he was able to cut most of the flap off and sew up the rest onto the side of his airway and that everything went smoothly (overjoyed!) The doctor said Malachi's trachea was healthy and that the tracheostomy tube could have been removed... but there were currently no spare beds in the PICU. Again, we felt disappointment... but at least this disappointment was mixed with the hope of soon being trach-free! Jodi was able to go into the post-op room where she panicked momentarily at the sight of blood coming out of Malachi's trach tube. We'll spare the details of the rather gruesome sight and let you know that Malachi's recovery went overall smoothly. Our hearts went out to the little guy for having yet another surgery (not what we were expecting from this scope) and we were truly thankful for the support of the nurses and healthcare staff caring for him (many of whom we already knew.)

After only a few hours, we were able to return home. Within 2 hours of being home, however, we received a phone call that Malachi could come to the ICU at 6pm and have his trach removed! Praise the LORD that a bed had opened up! Jodi hung up the phone and said to Malachi: "Malachi, we need to go back in the van!" Malachi looked up from his toys and said, "No thank-you, Mommy. No more hospital..."

And so that evening, after 904 days with a tracheostomy tube, Malachi's trach tube was removed! Many hospital staff members popped into his room as everyone celebrated this incredible milestone.

Malachi with Daddy and Mommy right after decannulation. He was a little unsure with all the attention and commotion and extra people in his room!

He cheered up soon after and if anyone asked him where his trach was he would say: "All gone! In the garbage!"

Is Malachi now able to get colds and sicknesses just like any other kid?

Many people have asked us if Malachi is now "normal" in the sense that he can handle colds and viruses like any other kid. Can we ease up on our strict rules around having only healthy visitors, etc.?

The answer is that Malachi still has severe chronic lung disease (just like Liam and Taylor who have milder cases of it). And so, colds and viruses will always be harder for him to get through. Often, he still needs an oxygen tube under his nose when he is sleeping  even when he is healthy (breathing while awake is different than breathing while asleep). When he is sick, he will still need extra oxygen and maybe even some breathing support through a high flow nasal cannula or a CPAP mask. We need to watch his breathing and monitor his oxygen levels especially when he is asleep and/or sick.

It is our hope and prayer that as time goes on, he will be able to handle colds and respiratory viruses easier. That's because lungs continue to grow until a person is between the ages of 7-11 (roughly... we've heard different statistics from different doctors). So until he reaches that age, we should see improvement in his tolerance. Please note that this has nothing to do with his immune system needing to get stronger. We often hear well-meaning comments that it is "good for the triplets to get exposed to colds and viruses so their immune systems improve and they can handle them better". On one hand it is true that their immune systems are not as strong because they have not been as exposed to colds and viruses. On the other hand, it has not been safe to expose them to colds and viruses because their lungs are not healthy enough to handle it (a separate issue from their immune systems). And so, as they grow in the next few years, as parents with the guidance of doctors, we have to carefully weigh how much we should be exposing them to and how much we should be protecting them from.

Ready for bed with his oxygen tubing all set up

Why remove the trach if he still cannot handle getting sick very well?

Another good question. Malachi's sole reason for having the tracheostomy tube was to ventilate him through it because his lungs were damaged (from being born prematurely at 25 weeks gestation). Because we had the trach tube, we were able to take him home from the hospital on a ventilator. Over time as his lungs grew, he didn't need the ventilator 24/7 and eventually only needed it when he was sick. The thing is, having a trach tube (which was truly a blessing!) also meant that sicknesses were often worse for him. This is because the trach tube sits right above the lungs... a perfect recipe for pneumonia as bacteria can easily grow and mucous can't get easily coughed up. Malachi often had pneumonia when he had his trach.

Now that his trach tube is removed, colds and viruses may mean that we end up in the hospital on a ventilator, since we can no longer ventilate him at home through his tracheostomy tube. His lungs are still chronically damaged even with the trach removed. However, the plus side is that his colds and viruses will hopefully not be as severe.

Further, having a trach tube is a safety issue in many other areas. He needed to be watched 24/7 because the trach tube could become plugged with mucous (so that he couldn't breathe at all) or accidentally come out (not as big of a deal the healthier he got but could mean a second surgery if he wasn't ready for it to come out and the hole closed on its own). The trach tube is also a huge drowning risk. And so, having the trach tube removed has taken away a lot of other safety concerns (not to mention a LOAD of work!)

How has Malachi been since his trach has been removed?

It is interesting that as parents, we thought we would feel a huge relief as if a huge burden and responsibility had been lifted from our shoulders once Malachi's trach was removed. That hasn't been the case at all and we have felt quite stressed and edgy. Part of the reason is that our "security blanket" has been taken away. We knew what to do when Malachi got sick. Sure, it often meant a hospital stay but we knew how to handle a lot from home in terms of his ventilator and oxygen. Now, when he gets sick, we don't have as many options! Also, we are used to Malachi being watched 24/7 and on monitors. While we still have nursing coverage at night, we have a meeting coming up where our nursing hours are going to be discussed... and we are told, likely reduced or taken away. Malachi's doctors still recommend he is watched all night especially when he is sick, but there are guidelines and rules for home care nursing qualifications and so we aren't sure if we will be able to have this in the weeks and months to come. That is a huge stressor for us... what if we don't wake up from his oxygen monitor alarming? After all, we hear all sorts of alarms in our dreams! Will we be able to even sleep knowing no one is awake watching his breathing and oxygen levels? Time will tell.

In the meantime, Malachi has recovered well from the soft tissue being removed and stitched. His trach stoma (hole) is still gaping in his neck and may need to be surgically closed in 4-6 months if it doesn't close on its own (we hope and pray not!) He often needs oxygen under his nose while asleep to keep the oxygen levels in his blood high enough.

Recently, Malachi had a cold from which he is currently recovering. While all 3 of the triplets needed puffers to help them get through the cold, Malachi especially (unsurprisingly) had a rough go. We ended up at the hospital twice with him since he required more oxygen than we are "allowed" to give him at home in order to keep his blood oxygen levels up. Further, his little chest and abdominal muscles were heaving away as he worked hard to take each breath. We need to take him to the hospital when this happens because he can quickly tire out and not be able to oxygenate or breathe effectively by himself anymore. We've been warned rather strictly to not let him be working hard and chugging away for too long. The doctors have warned us that we don't want to be at home or even on our way to the hospital when he gets too exhausted to breathe...
After two hospital visits, many texts and phone calls with the complex care doctor working on the weekend, the doctor decided that a bed at the hospital would be "saved" for Malachi on Saturday night where he would likely receive breathing support. The ER staff and ward were expecting us to come in, but thankfully Malachi turned a corner and we have been able to stay home for the remainder of the cold!

Photo of the triplets by SD Photography taken while Malachi's trach was still in

And, of course, our sweet Hazel!

Thankful

We have mentioned how stressed we feel without having Malachi's trach anymore, but we of course feel immense gratitude that the LORD has brought Malachi to this point in his life! Our medical journey isn't over yet, but a huge chapter has closed. Looking back, we are humbled at how the LORD has blessed our family. We were told multiple times by doctors that each of our triplets but Malachi especially might not live... and here we are with three (no, FOUR!) beautiful children of God. We were told that Malachi would likely have his trach until he was at least three or four years old... and here he is trach-free at two years old! In many ways, God has worked miracles for us and we are so grateful. It's not always His plan to give life, or to take away pain, or to allow "typical" development, or to remove trachs... but to Him be the glory in all situations and circumstances!

If you've made it to the end of this blog which has been much longer than intended, we'll leave off with the words from Matt Redman's song "10,000 Reasons (Bless the Lord)" which the triplets love to belt out at any given moment:

"The sun comes up
It's a new day dawning
It's time to sing Your song again
Whatever may pass
And whatever lies before me
Let me be singing
When the evening comes

Bless the Lord oh my soul
Oh my soul
Worship His Holy name
Sing like never before
Oh my soul
I'll worship Your Holy name"

Prayer Requests for Malachi's Bronchoscopy

Malachi has an big week ahead, and as parents we wanted to share a little update to "correct" a lot of the things we have been hearing, and to also ask for prayers. 

First though, we want to share a few photos of our beautiful baby girl that God gave to us on August 9, 2019. We named her Hazel Grace VanWoudenberg. She was 8lbs and 14oz at birth... which when calculated is 5.2 times heavier than Taylor (our smallest triplet) was at birth! We are so grateful to be experiencing a full-term baby and all the incredible blessings that come with it. What a miracle and what a gift life is..!

Brand new

Such a smiley and sweet little girl!

The first thing we wanted to "correct" is that Malachi is not necessarily getting his trach tube out this week. It is a possibility, but there are a lot of things that could prevent this from happening. 

In our last update, Malachi had gone for a sleep test in July that had revealed he was having periods of apnea while asleep. The apnea was both central (mild) and obstructive (one "point" shy of severe). This news was disappointing for us to hear. The doctors told us that the next step was to schedule a sedated bronchoscopy for Malachi. This test will be, if it is the LORD's plan, this coming Friday September 20th. This is the first time Malachi goes for this test.

If Malachi gets sick with a cold or anything, the bronchoscopy will be cancelled and need to be rescheduled. There was a 2.5 month wait list to get our current date, and so we pray that he (and our family... in order to protect him from anything) will stay healthy for the next 5 days!

If he remains healthy for the bronchoscopy, Malachi will be brought to the OR and sedated. The doctors (specifically, his ENT doctor) will use a scope to check out Malachi's airway through his tracheostomy tube and potentially without his tracheostomy tube inserted as well. The doctors want to see if there are any areas of concern, such as collapse or damage (from the tracheotomy surgery) or growths or obstructions. This could very well be the case, since the sleep study did show obstructive apnea, meaning that something was in his airway causing him to have difficulty breathing while asleep. However, the obstruction could be the trach tube itself. This is the scenario that we are praying is indeed the case!

If Malachi's bronchoscopy does end up happening there are three possible scenarios: 

1. If the bronchoscopy shows that there is a problem in Malachi's trachea/ airway, then the doctor will put the trach tube back in. Once Malachi wakes up, we will go home and a new plan will be formulated by the doctors on his team (we will probably be looking at more than a 6 month time frame for this). This would likely mean a surgery of some kind to correct the problem(s)... a scary scenario for us as parents. 

2. If the bronchoscopy shows there are no problems in Malachi's trachea/ airway, then the doctor will be able to take the trach tube out (hopefully permanently). First though, the doctor will need to confirm that there is a hospital bed available for Malachi in the pediatric ICU (PICU), as he will have to be closely monitored for the next few days. 

3. If there are no available beds for Malachi in the PICU, then the doctor will put his trach tube back in. One Malachi wakes up, we will go home and wait for a bed to be available for him. Once everything lines up, we would be able to take him to the hospital, take out his trach tube while he is awake, and stay until he can safely go home. We would also need to wait for his tracheostomy stoma to close up (aka. the hole in his neck) before we could go home. We are told this could take a few days or a few weeks.

Thankful that this little guy is still worry-free and too young to understand this all

And so our prayer requests are these:
- that Malachi remains healthy and sickness free so that he can have the OR procedure this coming Friday
- that the bronchoscopy goes smoothly (it's always scary sending your child to the OR and having him/ her sedated!)
- that the bronchoscopy shows no areas of concern, collapse, damage, growths, or obstructions
- that there is a hospital bed available for Malachi
- that Malachi can have his tracheostomy tube removed safely and permanently 
- that the stoma/ hole will close quickly and on its own without surgical intervention 

If everything does go smoothly and how we have been praying so hard for in these last few months, we know that Malachi's medical journey won't be "over", so to speak. We will likely be going home with oxygen still that he would receive via a nasal cannula (tubing taped under his nose). We don't know how he will be when he gets sick... while he will likely not get as sick without the trach tube, we don't know for sure that he will not need ventilation or respiratory interventions. There will be a lot of uncertainty and close monitoring for a while. And he will likely always have a harder time with colds and sicknesses and respiratory things. Of course, he still has his g-tube (feeding tube) as well. But that will all be the next hurdle... for now, we are focused on the bronchoscopy and where that will lead us!

Our triplet two-year-olds

We have a lot of anxiety and worries for this next week, yet we continue to lay them before God. He has a perfect plan for Malachi, and we need to accept whatever it may be. Our lives would be exponentially easier without that tracheostomy tube... all the work that comes with it and the great responsibilities it gives us with all the risk factors it presents... yet it is not up to us to decide whether or not he still needs it. He teaches us again and again to simply trust Him!

Everyone is in love with Hazel

July Update: Dealing with Setbacks

Since our last blog, we haven't really followed up on a number of big things that were hopefully going to happen for Malachi. We've been getting a number of questions about it and thought we should post another quick update!

(Canada Day)

Malachi was scheduled for a big test (a sleep study) in May to see in great detail how he was breathing at night without the ventilator. The sleep study looks at a ton of things, including brain activity, REM sleep, CO2 levels in the blood, oxygenation in the blood, how much work the muscles and lungs are doing, etc. At the time he was booked for the sleep study, he was almost 6 weeks ventilator free and we were very excited to see how the study would go. Unfortunately, only a few days before the study, he came down with a fever and needed his ventilator again. The specialists cancelled the sleep study and said their policy was that persons needed to be healthy for at least 3 weeks before a sleep study was allowed. When we inquired about booking a new test, we were told the wait list was 8 months. We were so disappointed and frustrated, especially since the fever went away within a few days and no one else in the family got sick either. It seemed very random and very bad timing. 

Thankfully, Malachi's medical team and Malachi's persistent parents were able to get Malachi on a cancellation list. Everyone was aware that we had a baby on the way and tried hard to get Malachi squeezed in somehow this summer yet. Even though we had to drive well over an hour, we told the sleep study specialists we would drop everything for a cancellation and come. So that's exactly what happened: on June 25th we were told in the morning that there was a cancellation for that evening and away we went. 

From our perspective, the sleep study went really well. Not only was Malachi tested on his Airvo (humidifier without the ventilator) for half a night, but they also trialed him with a cap on his trach (meaning, he was breathing around the tracheostomy tube and through his mouth/nose) for the rest of the night. Because his trach was a bit large and Malachi was having difficulty breathing around it, we decided to change his trach to a smaller size we had with us. This went much better, and Malachi slept well through that too! We were very hopeful based on what we had seen all night and were excited to see the official results from the specialists and doctors.

Sleeping peacefully during his sleep study

Fast forward to today (July 16th), when Malachi had an appointment to discuss the results as parents and healthcare team. We were very disappointed and surprised to hear that Malachi had had periods of apnea during the sleep study. This meant he would stop breathing for a few seconds (longer than normal), and his oxygenation would dip a bit into the high 80s before he would take another breath. Our home monitor did not pick up these dips in oxygenation during the sleep study because the settings are not as sensitive as the hospital's monitor. Thus, we had not noticed anything different at the sleep study or ever at home either. The apnea was considered one number shy of "severe" while he was wearing the trach cap (10 times he would stop breathing within an hour). 

What does this apnea mean? It could mean a few things...

1) Best case scenario, it could be the trach itself that is causing too much work for Malachi to have to breathe around and that makes him stop breathing from time to time. If this is the case, there is no issue to taking his trach out permanently... we just don't know if that is the real issue or not.

2) Worst case scenario, there are areas of collapse or obstruction in Malachi's windpipe/airway that are blocking him from breathing easily. This could mean reconstructive surgery on his windpipe and that would be a longer and scarier road for sure... It's one that we never considered having to go down since Malachi's need for the tracheostomy tube was never because of the structure of his airway but rather because of his premature lungs. 

How will we know what the apnea is from?

The next step is that Malachi needs to have a sedated bronchoscopy. He'll go to the OR and be sedated while his ENT doctor sticks a scope down his airway and checks out the structure and looks for areas of collapse. The ENT doctor will also try take the trach out while doing the scope to see how everything looks. If areas of collapse or obstruction are seen, the trach will go back in and we will have to talk next steps from there. 

In the best case scenario... if everything looks clear and healthy, then there is a small possibility the trach can stay out right then and there. That depends on whether or not there are hospital beds in the Pediatric Intensive Care Unit (PICU) available for Malachi to stay for a few nights or weeks (while they monitor him closely to see if he is tolerating being trach free and then wait for the hole in his neck to close).

The waitlist for a sedated bronchoscopy is at least 2 months. That was also very disappointing to hear. Our new baby is due August 10th and we were told that October is a reasonable time to expect an OR date. Our dream of having a "trach free Malachi" by the time our baby comes has officially flown out the window and into the window flew new concerns and worries. 

In addition to all this, Malachi has been losing weight and it has become a cause for concern with his medical team. He's falling behind on the growth charts at 23 lbs (which is over 5 lbs lighter than his brother Liam). We are doing our best to "fatten him up" with his feeding tube while still encouraging him to eat orally. It's a difficult balance, since the feed through the g-tube lessens his appetite and willingness to eat orally... which is a skill we don't want to lose! The medical team has also discussed with us how Malachi needs to be healthy and thriving if his trach tube will be removed... it won't be done if he is underweight, lacking energy, etc. He is definitely a very active, talkative, and busy toddler at this point but we do need him to start gaining! 

Malachi at the beach

Can't leave out the siblings... here's Liam!

Taylor

Still enjoying our summer! (Sidenote: Malachi is being safely held by Nathan so that he doesn't submerge in the water... the trach tube is a serious drowning hazard as water would flow directly into his lungs through the trach and/or through the hole around it)

At the end of the day, Malachi's test results were not all negative and could mean nothing serious. So we remain thankful and hopeful and prayerful that one day his tracheostomy tube can be safely removed - not just for his parents' sake (and all those involved in helping our family out with the heavy responsibilities that come with having a tracheostomy tube)... but also for Malachi's sake! And we are reminded again and again to trust in God's perfect plan for us all, amidst this messy and broken world we live in. He's in complete control, even when things don't go the way we have been praying for and longing for. What a comfort that is!

One Month Ventilator Free!

We have an exciting new update to share on the blog, and we ask for your prayers in the upcoming months for our Malachi! To better explain the situation, we will start with a very short history of Malachi's breathing support needs and tracheostomy tube.

Our happy three!

On November 11, 2016, our triplets were born at 25 weeks and 2 days. Due to their prematurity, they were on breathing support (ventilators) for months. Malachi's lungs ended up being the worst, for no specific reason. He had many difficulties and setbacks and life-threatening moments. 

On March 31st, 2017, Malachi had his tracheostomy tube surgery. The reason for the trach tube was to better be able to ventilate Malachi, since his lungs were so damaged and he was not improving as the other two triplets were. The whole point of the trach tube was to be attached directly to breathing support and therefore be able to come home on breathing support (rather than remain intubated in the hospital). 

From March 31st, 2017, to October 3, 2017, the medical teams in the ICU worked to bring down the settings of Malachi’s breathing support until they were deemed low enough for him to come home safely (although still considered “high settings” by medical standards). Malachi also had to be stable on the settings, meaning that he didn’t need them to be constantly changed based on how he was doing from day to day. 

On October 3, 2017, Malachi came home from the hospital on breathing support 24/7 and on oxygen 24/7. Often, we had to go back to the hospital to tweak settings, check blood gases, be an in-patient when sick (he needed different settings then), etc. As parents we were trained to closely monitor his breathing and his oxygen saturations.

From October of 2017 to July of 2018, we slowly worked with the healthcare team to turn down the high breathing support pressures and turn down the oxygen litres flowing through the breathing support pressures. This was as Malachi could handle it - his lungs were slowly growing. 

In July of 2018, the medical team said that the settings were low enough for now and gave the go-ahead to try take Malachi came off his ventilator for the first time for 5 whole minutes! And he did well!

From July of 2018 until April of 2019, with the medical team’s close guidance, we have been slowly increasing that time off of the ventilator from 5 minutes, to 15 minutes, to 45 minutes, and so on. When Malachi is awake, he breathes much easier than when he is asleep. So while it took a matter of months for him to be off of breathing support during awake hours, it took much much longer for sleeping hours. His oxygen saturations in his blood would start declining and his little chest would start heaving, along with other signs he needed his ventilator re-attached (that we are trained to watch for).  Every cold or sickness was a setback - some more major than others. But slowly, over time, the minutes and hours on the ventilator for each day (and naptime and nighttime sleeping) were reduced.  

And then... on April 18th, 2019, Malachi’s medical team gave us the go-ahead to try keep Malachi off of his breathing support machine for as long as he could tolerate. We are thrilled and overjoyed and thankful to God that Malachi has not yet needed his ventilator again! He has been off of breathing support for over one month! Praise God for blessing Malachi with this gift...! And also blessing us as parents and caregivers with the relief of having all our children off of breathing support for the first time ever! 

Waking up after 24 hours without a ventilator for the first time in his life!

Even though he is off his breathing support machine, he is still often needing extra oxygen when sleeping. His lungs can’t quite exchange gases as effectively as healthy lungs and he needs a little help here and there in that department. And so we continue to monitor him closely. He’s still hooked up to a heated humidifier machine called an Airvo through his trach tube when sleeping (we can also give oxygen through this special humidifier machine) and still hooked up to a monitor to watch his oxygen saturations while sleeping. And he still needs to be watched 24/7 (which means we still need nurses to come every night so we can sleep), and suctioned, and to have all the regular equipment cleaning and trach care he’s needed all along. We still take all his backup and emergency equipment and machines with us wherever we go too, as a precaution. 

Will he need the ventilator ever again? We don’t really know at this point. He could definitely still need it if he gets sick. He could possibly still tire out in the near future and need some breathing help. But the future certainly looks hopeful! 

Why can’t we just take out the trach tube if he doesn’t need the ventilator at this point? 

Well, there’s a number of reasons. If the trach comes out, it’s very possible that the hole in his neck will close on its own (sometimes they do and sometimes they need surgery to be closed... depends on the child). So, if we let him run around with no trach and the hole closes (doesn’t that just sound like freedom?!), it would be a huge emergency if he got sick, tired out, or needed the ventilator for any other reason. While there are other ways to ventilate a child, we want to do as little damage and bring as little pain as possible to Malachi. We want him to be safe. 

And so, we need to have a number of tests run on him to ensure that:

1) He is ACTUALLY doing well off of the ventilator. Are his blood gases okay (you can’t always tell by looking at him), is he comfortable enough or is he actually working too hard to breathe, etc...? This requires extensive monitoring while sleeping overnight at a hospital hooked up to tons of probes, wires, and monitors. 

2) If we pulled the trach tube out, could he breathe okay or has the structure in his trachea/ windpipe/ neck been damaged by having a trach tube placed? Often, cartilage is damaged by trach surgery and collapses without the hard plastic of the trach tube in the neck. We may have to have special tests done for this where Malachi is sedated and scoped.

3) How will Malachi do when sick without a trach? This is a tricky question because having a trach and being sick is not the same as not having a trach and being sick with the same sickness. The trach tube prevents mucous, boogers, secretions, etc. from being able to easily be coughed up or cleared. It can easily make bacteria stay and grow. And so, it’s not really a fair assessment for him to have a trach and be sick... he might do better being sick WITHOUT the trach. But we don’t really know.

4) Is the healthcare team comfortable without the “security” of the trach? The trach means we can easily ventilate Malachi if needed. We KNOW his lungs will never be as healthy as an average child so we know he will struggle more through sicknesses. At what point is it safe to remove and at what point is it safer to keep it in for a while longer? Since Malachi has also been needing oxygen still, would the team be comfortable letting him have oxygen under his nose through an oxygen tube, or will they see this as a sign he still needs the trach tube? Over the next months, the medical team will be discussing this (and that means professionals from different specialties and hospitals who all know Malachi coming together to discuss and decide). 

With all these questions in the air, we begin some testing already this month. Our “biggest” test will be another sleep study happening in a week’s time. We have been so anxious and excited and stressed out and flip-flopping between unrealistic optimism and unrealistic pessimism. We pray each day that he is ready for it to come out because it would make his life AND our lives exponentially easier..! (Especially with a baby coming in few months, the LORD willing!) And we ask for your prayers too that his tracheostomy tube can be removed in due time... maybe even this year. At the same time, we obviously want what is best and safest for our child. We want him to be safe. We are scared to think about what would happen if he was sick without having a trach! It’s become our security blanket too, because it has become so normal for us. And we know it is a very real possibility that he will "fail" the sleep study or some of the next tests and still need the tracheostomy tube (and ventilator) for a long time yet. 

But ultimately, we give it over to God (even though that’s so often easier said than done). His Will be done! He’s brought Malachi to this point even though doctors told us multiple times they didn’t know if he would survive or that they were “backed against a wall” in terms of the breathing support available to help Malachi. He’s worked miracles again and again for our sweet boy. He’s given us this vibrant, spunky, stubborn little guy even though we’ve seen him blue, white, grey, and lifeless multiple times in the hospital. He's had a "popped lung", a pneumothorox, many lung collapses, and pneunomias. We’ve watched him receive CPR by medical professionals and we’ve had to resuscitate him at home many times. That he walks and runs and misbehaves and talks our ears off and yells and sings and fights with his siblings and dances to music... all gifts we do not take for granted! To God be the glory.

One of our three miracles

“Rejoice always, pray without ceasing, give thanks in all circumstances; for this is the will of God in Christ Jesus for you.” (1 Thessalonians 5:16-18)

Happy 2nd "Bonus" Birthday!

Today, the triplets are 2 years old corrected! Although they turned 2 on November 9th already, February 19th was their due date. We like to say they have 2 birthdays a year!

It’s about time to give an update on their progress over the last few months - especially Malachi’s progress as it has been significant!

Our last blog post was from November 5th, 2018... only 6 days before the triplets' 2nd birthday. We had just spent a fair amount of time with both Malachi and Taylor admitted in the hospital with a respiratory virus. Liam did end up getting sick too (probably the same virus) and spent a few nights in the hospital as well. He came home on the evening of the triplets’ birthday, so it wasn’t quite the birthday celebration we were imagining! Their birthday party too was a “flop” in that nearly all our friends and families were sick and couldn’t attend... not a good time of year for medically fragile kids to have a birthday! But since those hospitalizations in October and November, we are thankful to say that we have stayed out of the hospital (aside from lots of appointments of course). We realized again at that time how important it still is to avoid colds and viruses and have stayed in strict isolation from sick people and public places.

Everyone finally reunited on their birthday after all the hosptializations

In December, Malachi finally learned how to walk! He was SO proud and happy to be walking like his siblings. You could see it in his big grin and in his persistence in getting up every time he fell. Today he is still more wobbly than his siblings and still strengthening some of his muscles but there is no stopping him.

All clean and ready for bed

In January, the triplets all had a stomach virus that lasted over a week. It wasn’t fun of course, but it wasn’t scary for us like a cold or respiratory sickness is. Their breathing wasn’t impacted and so it was not a stressful sickness in that sense.

It also ended up being a blessing in disguise for Malachi...! Malachi was only taking pedialyte in his g-tube because he couldn’t keep anything else in him for over 7 days. By the end of that time he was begging us for food because he was so hungry. As he was starting to keep his food down, we let him eat orally. He ate more with his mouth than EVER before! He was just so hungry that he must have finally connected having food in his mouth to getting rid of that hunger feeling. In the next few weeks he started eating approximately 75% of his food orally, and only needing around 25% through his g-tube (still 100% of fluids through the g-tube though). We were overjoyed at this unexpected progress and so thankful! At the same time, we realized he could easily regress and fluctuate in his oral eating, as most kids like him do.

At the end of January, both Nathan and Jodi had a significant cold and were very worried about passing it on to the triplets. We are pretty sure that it ended up being the RSV virus, which the triplets are still vaccinated against with needles every month. We are so thankful that they have qualified for this government funded vaccination again this winter, as it almost certainly would have put all three in the hospital again... for Malachi especially it could have been very serious.  

Happy girl!

That brings us to February. At the beginning of the month, the triplets had a small cold that they have been managing quite well. Malachi saw his medical team once for it and was on puffers, but otherwise has been holding his own. This cold has set back his oral eating (as expected) and we hope and pray that will pick up again more and more as he gets better. A few weeks ago, Jodi accidentally pulled out Malachi’s g-tube as she was taking him out of his high chair after dinner. It caught on the edge of the high chair and popped out of his belly. Naturally she felt terrible, but thankfully we were able to get a new g-tube back in without going to the hospital. This was a big deal for us, as it’s never happened before. However, now that we have done it once it should be “less of a big deal” if it should happen again. It’s a new skill under our belts!

This month, the triplets were all assessed to see how they were doing from a developmental perspective, now that they are 2 years old “officially”. The doctors and medical professionals who assessed them were very impressed with their progress.

Taylor is the forerunner in many ways, as she is very teachable and soaks up new information. She is very observant and loves to sit and read books. She is quite patient and will sit and play with things like puzzles quietly. She knows a few of her colours, a number of songs, can count to 10, and is constantly chatting away to herself or to whoever will listen.

Liam is doing extremely well for being a 25 weeker at 2 years old as well. He is learning his colours, can count to 10, sing some songs, and is learning more and more too. He is less patient than Taylor and throws things like puzzle pieces or yells when he is frustrated. It’s all very typical for his age, of course! In many ways, we can see how he is more masculine than Taylor. He loves to rough-house and injures himself on a regular basis. But he also is very tough and doesn’t cry easily. He keeps us on our toes more than the other two, although all three are becoming very skilled at getting into mischief!

Malachi is harder to test for developmental progress than his siblings because he is wants nothing to do with medical staff and doctors. He cries when we walk into appointments and clings to his mom. We don’t blame him. In discussing his progress and comparing him to his siblings, however, the team is very pleased with his progress too! He is still playing “catchup” to Liam and Taylor which is very cool to see. He isn’t progressing slowly, but rather in leaps and bounds. He has just learned how to climb onto the couch like his siblings, is learning new words, is eating new textures, and is getting faster at walking/running. He can sing some songs too, count to 10, make some puzzles, etc. He is often harder to teach new things because he is a stubborn little guy and likes to do things on his terms. Out of the three, he loves to be chased the most and has a very obvious sense of humour.

A lot of medical issues that are common in micropreemies like our triplets can be generally ruled out at this time, such as cerebral palsy, autism, and ADHD. This brings us tears of thankfulness and sighs of relief. That said, there are still difficulties that can show up later on in their lives - especially when they go to school. That would include things like learning disabilities and mild ADHD.

These appointments gave us much reason for thankfulness to God. The doctors and medical professionals praise our parenting and support system as primary reasons for their success but we KNOW it is the LORD who has granted these gifts! (As a side note, the medical teams always marvel at our support system. How beautiful is God’s good design for relationships within families, in friendships, and in the Church! How incredible that He has made us hands and feet to each other! The communion of saints is a beautiful gift.)

Liam

We get a lot of questions about Malachi’s respiratory progress and we have more positive news to report! Back in November Malachi had made it to 12 hours off his ventilator during the day and 12 hours on his ventilator still at night. When he got sick, he was back on his ventilator 24/7. As he recovered, we again scaled back to 12 hours on and 12 hours off. As parents, we began pushing Malachi’s medical team for more time off the ventilator (breathing support machine) because we believed he was ready. In the last few months we have started to push harder and advocate more strongly. The reason that his team is so hesitant is complicated, but mainly it is because another hospital is now involved in that decision making process... and no one wants to step on anyone’s toes. With our persistence and monitoring, Malachi is now allowed off his ventilator for 14 hours a day (2 of these hours are at night while sleeping and 2-3 of these hours are during his afternoon nap). We plan to bump that to 15 hours a day this week, if Malachi’s cold disappears completely. (We don’t make any changes when he is sick... in fact, he generally needs more time on his breathing support when sick with any minor cold or illness).

Lastly, we just wanted to mention again that Malachi still needs 24/7 monitoring which still necessitates night nursing. People often assume that the less Malachi is on the ventilator, the less we need to watch him. Any child with a tracheostomy tube needs to always be watched. If the trach tube comes out or if the tube gets blocked with mucous (which can easily happen), it would be life-threatening. He still needs to be closely watched and still needs someone sitting in the back of the van with him, etc. He still travels with lots of emergency equipment, oxygen tanks, a suction machine, ventilator, oximeter, resuscitator bag, etc. It will all be this way until he has his tracheostomy tube removed permanently. When will this be? Well, firstly, he needs to be off his ventilator 24/7 (this will still take months if everything goes smoothly and he doesn’t get sick). And secondly, he needs to be able to get sick with a respiratory illness and handle it without needing his ventilator (we know he is still a ways off from this). It could still be a few years. Only God knows the answer to this and we constantly pray it is sooner than later!

In the meantime, there is still a lot of work with cleaning equipment and parts (even moreso now that Malachi is on both his ventilator and his new Airvo machine for parts of the night) changing out Malachi's trach tube every 2 weeks, trach cleaning twice a day, blending feeds, etc. From that side of things, as Malachi gets stronger and stronger lungs the workload does not decrease. Again, that will only be when the tracheostomy tube (and g-tube!) come out for good. What a wonderful day that will be! 

Most of you know that the LORD has blessed us with a new addition to our family who is due in early August! We are very grateful but also very nervous about the possibility of having another premature baby. Your prayers for a healthy and full-term pregnancy are greatly appreciated... these gifts cannot be taken lightly. Time and time again, the LORD reminds us through Bible passages, devotionals, sermons, and other means to REST in HIM. It doesn't mean life will be perfect. He doesn't promise us that this pregnancy will be full-term and healthy either. He doesn't promise that the triplets won't have more health challenges or that Malachi will be trach free tomorrow (as we would love!) But He does promise to hold onto us. He does promise that everything that happens is His plan... and for His glory and our salvation. And with these promises we can rest!

Psalm 131:

"O LORD, my heart is not lifted up; my eyes are not raised too high; I do not occupy myself with things too great and too marvelous for me. But I have calmed and quieted my soul, like a weaned child with its mother; like a weaned child is my soul within me. O Israel, hope in the LORD from this time forth and forevermore."