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."

Three One-Year Olds

The title of this post is “Three One-Year Olds” because in a few days we can’t say that anymore..! The triplets are almost two!

This update is long overdue and the longer I put it off the harder it is to start... so here goes...

Our last post was from the end of July and Malachi was starting to have some periods of time off of his ventilator. It was a very exciting time as Malachi kept surprising us at what he was able to do! Over the course of the summer, he has progressed to 12 HOURS off of the ventilator each day! Part of that time includes a nap, during which he has started to use a new humidifier machine called an Airvo. He is attached to the machine with a tube connected to his trach. People with trachs need to stay humidified because they don’t use their nose and mouth to naturally keep their lungs humidified. (The more we learn about the anatomy of the human body the more we think: “Isn’t our God an amazing God?! Everything is designed so intricately!”) So when Malachi is awake and off of the ventilator (which also has built in humidity), he wears a little sponge on his trach that helps humidify him. The sponge is called an HME and it does not work as well as an Airvo machine to humidify but he moves around too much when awake to keep the Airvo attached to him.

When Malachi is off of his ventilator and only wearing an HME it is such freedom for him and for us as parents! He doesn’t have a short “leash” attached to his neck and we don’t need to follow him all day every day. However, Malachi still needs to be attached to a monitor to make sure his oxygenation is okay. Having a trach includes a lot of risks such as the trach coming out, getting blocked, etc. Malachi can get tired out and need the ventilator back on too. If he gets sick, he needs the ventilator back on as well. And so, we still need to closely watch Malachi 24/7 - even when he is detached from the ventilator and breathing on his own through the trach. This includes when we drive anywhere in the van - someone needs to sit with Malachi in the back always.

Here is Malachi at an overnight sleep study in August to help determine how much Malachi can "handle" being off of the ventilator. All of the changes and decision-making that happens for Malachi requires lots of appointments and phone calls and blood work and specialists..!

Another exciting development is that Malachi has started being able to use a speaking valve on his trach that helps him vocalize and speak. We heard our baby boy laugh for the first time ever a few months ago and it brought us to tears. We will admit that we even “enjoy” it when he cries... it’s just beautiful to hear his voice! He is really starting to learn a lot of words and although he still babbles a lot and his words are often garbled, we can definitely understand a lot of what he is saying!

In our last post, we mentioned how we were switching Malachi's home-nursing care to a different model and as of August 1st we have been using that model of self-directed funding. We are so happy with the changes that were made, as we now can CHOOSE which nurses to hire for Malachi, instead of going through a nursing agency and having strangers show up at our door. We have hired nurses who are friends, friends of friends, and nurses we have come to know in the last 2 years. We sleep a better at night now that we know who are nurses are. Also, we have not had a missed shift since August 1st which means we haven't had to pull any all-nighters at home since then!

Malachi has also started to eat more and drink more. It is still a rollercoaster where some meals he’ll refuse to eat and some meals he will eat 10-20 bites... we continue to need lots of patience. But we do see that he is slowly progressing more and more. In the last few weeks he has started chewing and this is an exciting development as he used to only suck on his food until it turned to mush. He is also able to brush his teeth without gagging. These are all MAJOR steps for a child with a tracheostomy tube! We hope and pray that he will continue to move forwards and avoid any oral aversions. While Malachi continues to work on oral feeding, we have switched his g-tube feeds from pediatric formula to homemade food. We throw different types of food into a blender, blend it up, suck it up into syringes, and push it into his tummy. It is a lot of work but we believe it is healthier for him and we have seen improvements for him in a number of different areas - especially with his reflux. We are so grateful for the various families of children with g-tubes who we have come to know and who have taught us so much.

As for physical development, Malachi is still not walking but getting oh, so close! Our goal was that he could walk before his 2nd birthday but it’s not looking too realistic at this point. He is quite clever in how he gets around and he keeps up with his siblings quite well by pushing toys and walking along walls and furniture while I scramble to keep up with his monitor. If I’m not quick enough he will get to the end of the cord and pull and pull on it until it breaks or comes off his foot!

All 3 of the triplets had a Bailey’s Test assessment to see how they were doing in different domains of development and Malachi did quite poorly for his corrected age. However, he was very uncooperative during the assessment since he often becomes quite scared of going to hospitals and seeing medical staff (can’t blame the little guy!) We know he is behind his siblings still in a lot of ways but we also know that he is still learning and progressing and catching up from all the time he spent in the hospital struggling to breathe. We feel fairly confident that with time he will catch up to Liam and Taylor but of course that is in the LORD’s hands!

Watching Daddy mow the grass

Liam and Taylor have been doing really well in terms of development. Their Bailey’s Tests came back as mostly positive in that they were in the average range for their corrected age (just over 20 months now). Some areas were slightly below average but again we are not overly concerned as it’s typical for 25 weekers to be behind for a while. In general, they are doing remarkably well for being born so prematurely! Our 3 miracles..!

We love to see their little personalities coming out more and more. It is so neat to see them interacting and playing together and looking out for each other. They will often hand each other their favourite blankies when one of them is crying and even spontaneously hand out kisses and hugs! Of course, they fight over toys and tackle each other and someone gets bitten every now and then... but we feel so privileged to watch these three grow up together.

They love each other!

Building towers together

As it is now November, our family is officially in “hibernation mode” in order to avoid all the germs and sicknesses that are out there. We had really really enjoyed the warm summer months and were able to do a number of fun activities. We would pack up the Lysol wipes and hand sanitizer and karate chop anyone who tried to touch our kids (okay, not really... but we do politely ask strangers not to touch our kids when they try to in order to avoid spreading germs!) We even took the triplets to the grocery store every now and then (again, lots of Lysol wipes for the grocery carts). But now that cold and flu season is upon us we won't be doing that anymore. And now that the triplets are more active, it makes it harder yet to be stuck in hibernation mode - especially as our friends and families are getting sick and are forced to keep their distance from us.

We were reminded in the last month again of how important it is to protect all three of our mircropreemie triplets from getting sick.

On the Thanksgiving long weekend the triplets caught the common cold virus (Rhino virus) and Malachi was hit quite hard. He needed his ventilator 24/7 again and was on high oxygen amounts. We were back and forth to the hospital, had lots of phone calls with our doctors and respiratory therapists, and narrowly missed an admission. Then about 3 weeks later Taylor was airlifted by Ornge helicopter to the hospital when she woke up from a nap with difficulty breathing. It was a terrifying day and Taylor was admitted to the hospital for 8 days. Thankfully, she is now home and doing well. The doctors believed she had a virus which caused croup. Scary stuff for a preemie with chronic lung disease. 3 days after Taylor was admitted to the hospital, Malachi was admitted for probably the same virus. We had a scary few days with Malachi too on very high oxygen, higher ventilator settings, a new type of ventilator (servo-i because his trilogy wouldn’t allow enough oxygen to flow through), and a cuffed trach to seal off his airway. The ICU team then figured out that he had a bacterial pneumonia from pseudomonas as well. The IV antibiotics he had been on were not effective for this type of pneumonia. Once the antibiotics were switched Malachi started to improve again and is now home (discharged yesterday) after a 7 day stay. Malachi is not better yet and so we still have lots of puffers, antibiotics, and doctors on speed dial as we care for him at home. We are grateful that we can have such a great relationship with Malachi's team at the hospital so that we can communicate closely and feel confident that we have the right tools and training to care for our son at home.

While both Taylor and Malachi were in the hospital we were very worried about Liam getting sick and joining his siblings but so far he has stayed healthy. We stayed at the Ronald McDonald House again for the first time since our first 11 month stay there when the triplets were first born. Being there and also in the hospital gave us such heavy hearts and we cried a lot! But yet... it was beautiful to have so many relationships and welcoming arms too from the staff at the Ronald McDonald House and the hospital. Malachi sometimes feels like a little celebrity with all the attention and visitors he gets from staff at the hospital. It makes us feel good - knowing that they care about him too.

As we look forward to celebrating the triplets 2nd birthday in a few days, it’s crazy to reflect on the last 2 years and what has all happened. So many emotions... but maybe I’ll save some of that for the next blog post!

At a corn maze

At the zoo this summer

We again want to thank the community of friends, family, church family, and people we have come to know in the last few years for all the support and love we feel. When we had 2 triplets in the hospital this past week and we felt like we were at the end of our ropes... we felt the support and prayers of so so so many people. We are so grateful! We can see God working through so many people. He truly is a loving God.

“Give thanks to the LORD, for he is good, for his steadfast love endures forever...”

(Psalm 136:1)

Many Reasons for Thankfulness

It has been over 4 months since our last blog post and a LOT has changed! The summer months have brought much relief and joy to our family. The cheerful sun and warm weather seemed to wipe away some of the blues that come from being cooped up inside with little interaction with others. It is so much easier to get outside with three little ones and we are now able to see people more (due to less colds and sicknesses). We really cherish having little outings and visiting friends and family!

We were able to have our first ever vacation as a family of 5 when we went with our families to a cottage up north. The first 24 hours were very stressful because a storm had passed through the area right before we arrived, and as a result there was no hydro. While we have batteries for Malachi's ventilator, oximeter, and suction machine, the battery lives last between 6 and 9 hours. Further, we do not have battery backups for his humidifier, which he needs at night while sleeping. We do have a number of different options for situations such as these: an adapter for our van to charge the ventilator and oximeter and a fully charged marine battery that we can also plug some machines into. However, we didn't know how long the power would be out in the pretty remote cottage up north. Thankfully, two separate strangers offered to let us use their generators overnight and the power came back on after 24 hours!
It was also stressful and difficult to navigate having Malachi at the beach. He is unable to go in the water because he cannot get any water in his trach or stoma (hole that his trach goes into) or he would drown. Further, his machines are not waterproof... or sand proof... or sibling proof... Thankfully, we were able to come up with a few creative ideas and we had lots of helping hands from our families so that Malachi was able to enjoy the beach too.

Photo by Vicki-Lyn Photography

Developmentally, the triplets have been doing really well since our last update. Liam and Taylor started walking in the first week of July! They were 20 months old when they started walking, but 17 months corrected (which is what we still go by for developmental milestones). They say quite a few words now, climb, and get into everything.
Malachi started crawling in mid-April and can now walk along furniture and behind push-toys. He knows a number of words too, although sometimes he just mouths them when he cannot make noise. (For those interested in the logistics, Malachi is able to make some noises when air leaks beside his trach tube and up his windpipe - which is where his voicebox is located. When the trach tube is in a certain position and he figures out how to use his vocal chords at the same time, then he can make noises.) Overall, Malachi is still behind his siblings but he is not far behind at all anymore. He is our persistent and stubborn little guy, and his personality actually helps him quite a bit developmentally.

Liam (photo by Vicki-Lyn Photography)

Malachi still does not eat much by mouth, and as parents this mandates that we have a lot of patience every mealtime. He likes to try one or two bites generally, but usually spits them out eventually. It is very common for children to have oral aversions when they have trach tubes and not eat anything by mouth. We are very thankful that Malachi at least likes to try and explore tastes and textures, even though he still needs full meals through his g-tube.
Malachi also likes to try drink from sippy cups now, which was not planned..! Usually it is quite dangerous for children with trach tubes to try and drink as the risk of aspiration is high. Thus, most medical teams do not even let a child try to drink anything as long as they have a trach tube. Malachi, however, managed to steal a sippy cup one day and decided to try drink from it before we could get to him. We were not extremely concerned (certainly not as concerned as his medical team was!) because we have seem him successfully swallow his spit up (gross, we know, but very much a common occurrence for the poor guy). Anyways, Malachi has since proven that he is good at drinking small amounts of water or milk. We watch him closely and he will need to stop drinking altogether if we see any red flags.

Taylor (photo by Vicki-Lyn Photography)

With the warm weather upon us, Malachi seems to have really turned a corner in the last few months and his health has been improving in leaps and bounds! Our medical team has been slowly turning down his breathing support settings while closely monitoring how he is handling each change. Most of the changes are able to be done at home by us as parents, but regularly we go to the hospital and get some bloodwork and medical tests done. Malachi so far has handled all of the setting changes well.
About a month ago, the team felt that Malachi's settings were low enough that the next steps were to unhook him from the breathing support machines for short periods of time. This does not meant that his trach tube would get taken out but just that the tubing and the ventilator are detached from the trach tube. Malachi also needs to be very closely monitored during these times and hooked up to his oximeter to check his blood oxygen levels frequently. When the medical team first suggested this to us, we were thrilled and nervous and hopeful... a ton of emotions all rolled together! We sort of sensed that he would do well with this new change too- since Malachi often disconnects himself from the breathing support tubes (many times with the "help" of Liam or Taylor) and crawls away as fast as he can. Sure enough, Malachi has done incredibly well with small increments of time off of the ventilator. We initially started with 5 minutes off, then 15 minutes, then 45, then 1 hour, 2 hours, 4 hours... and now as of Thursday July 26th, Malachi is allowed to be disconnected for three hours twice a day... SIX WHOLE HOURS OF FREEDOM!
This is what we have been praying for! Not just us as parents... but also the incredible support system around us. Our family, friends, local church family, and extended church family from around the globe. God is truly answering our prayers in ways that we have longed for. We give Him all thanks and glory and praise.

We should note that while the first few weeks of disconnecting from the ventilator seemed to be a breeze for Malachi, we have now reached a point where we can tell it impacts him. He has been sleeping deeper and sometimes needs some extra oxygen while sleeping too. So it looks like we may need to slow down the process for a while and let him get stronger. This may mean going back to four or five hours a day as well.

Malachi disconnected from the ventilator! (Photo by Vicki-Lyn Photography)

With each new phase in the weaning process off of breathing support, we can feel some of our stress melt away. As Malachi becomes more and more stable we can feel ourselves relax a little more. The great responsibility and intensity of parenting a medically fragile child is ever so slowly being lifted. We know that Malachi can still go backwards and that the road isn't going to be perfectly smooth from here on out. We know he will get sick again with a cold or virus or something and that he probably will still not be able to handle that well. Having a trach is also a vulnerable thing- it could come out, become plugged, or blocked. And Malachi cannot make much noise because of his trach and so it is so important that we have eyes on him at all times.

The stress of having full and quality nursing coverage also continues to be significant. We are transitioning into a new nursing model program that the LHIN (formerly CCAC) has just opened up. We won't bore you with all the details but we hope and pray that this decision will be a positive one for our family. Malachi will continue to need someone awake with him at all times for as long as he has his tracheostomy tube, so we are still looking at months if not years of needing night nursing.

As we watch our three little ones grow and develop, and as we watch Malachi improve in his breathing, we can only thank God for how he has worked miracles in our family. It is crazy to think that exactly a year ago we were living at the Ronald McDonald House while Malachi was in the PICU and unable to move much at all without going into respiratory distress. Our family life used to be "survival mode" but it seems that we are (thankfully!) transitioning out of that mode as the triplets get older and Malachi gets healthier. Again, we thank and praise the LORD for His perfect plan for our family. His ways are so hugely greater than our own!

As Romans 11:33-36 reads: "Oh, the depth of the riches and wisdom and knowledge of God! How unsearchable are his judgments and how inscrutable his ways! 'For who has known the mind of the Lord, or who has been his counselor?' 'Or who has given a gift to him that he might be repaid?' For from him and through him and to him are all things. To him be glory forever. Amen."

Photo by Vicki-Lyn Photography

Update on the Winter Months

It's 2:30am. The house is quiet, except for the hum of machines and the whoosh of air with every breath that Malachi takes. There is no nurse available to watch Malachi tonight, and so as parents we are taking turns in shifts. Malachi is restless in his sleep, and every so often, I get up from my chair beside his bed and gently untangle him from tubes and cords. Sometimes I will hear him rattle or gurgle and I'll turn on the roar of the suction machine and suction down his trach tube. Between the suctioning, detangling, medications, pump feeds through his g-tube, emptying condensation buildup in his tubing from the humidifier, adjusting his oxygen, and monitoring his numbers, I can keep pretty busy tonight. But there's also extra time and so it's a good time to update the blog! We have been getting requests for an update and we apologize to those who have been often checking... life is busy with 3 one-year-olds! Allow me to start by answering a few questions we get asked all the time:

Photo by the talented Rennie Linde Photography

Are Malachi's lungs getting better?
The short answer is "no", not since we have come home from the hospital. But that is not really surprising, since the cold and flu season is so hard on kids like Malachi. He is compromised every time he gets sick with even a small cold or virus. We have gone higher on settings since we have been home because he needed more support during several sicknesses. We want him to go lower on settings until they are so low that he can start having periods of time off of the ventilator (breathing support machine) and eventually come off. However, the medical team is very slow to go lower on settings because he is at home and not being monitored 24/7 in a hospital. Thus as a general rule, they are quick to turn him up if needed but slow to turn him down. Malachi's breathing support settings are still very high. We are praying that with the end of cold and flu season we will start to see his lungs improve and his settings turned down a bit.

For those interested in more technical terms, Malachi was on the Passive S/T mode with 27 (PIP) on 9 (PEEP) and a cuffless trach when he came home in October. Today, he is still on Passive S/T mode with a PIP of 24 and a PEEP of 10 and with a cuffed and inflated trach for most of the winter (technically the PIP has improved but that was due to overinflation when the PEEP was increased in December and not considered a "wean").

How is Malachi's physical development compared to Liam and Taylor?
Even though Malachi's lungs have not seemed to have improved much this winter, we have seen HUGE leaps in his development! He can now sit all by himself, roll over by himself, and lift himself on to all fours (not crawling yet!). He can also stand for a little while if we prop him up on something. Overall, he is much stronger in all his muscles. He is working with occupational therapy and physiotherapy on a number of things such as getting himself from laying to sitting, from sitting to standing, etc. He is starting to "tell" us what he wants or doesn't want with lots of new facial expressions too- all great things! And so the gap between Malachi and his siblings in terms of physical development is really starting to close up and it is amazing to see. He is a persistent little guy and he amazes us all with how hard he tries to be like his siblings.

Watching a cat outside (with Mommy right behind Malachi in case his falls)

How has the winter been overall for sicknesses?
Well, let me start by first saying that we have been in extreme isolation this winter to avoid germs. We have had very few visitors since one of our rules is that visitors cannot come if they or anyone in their family is sick. We do not take the triplets to public places aside from medical appointments (and have also said "no" to appointments we felt were not worth the germ risk). Whenever we get home from church or work or anywhere public, we take a shower and change our clothing.
Of course, it was not possible to avoid all sicknesses and we have had a number of viruses and colds hit all three triplets. It has meant lots of antibiotics, puffers, ER trips, high stress levels, close monitoring, chest x-rays, and many trips to the doctor. In October and November, all the triplets had a cold (rhinovirus) which Malachi ended up getting twice and stayed one night in the hospital PICU for observation. In the end of December and beginning of January, Malachi got another cold and ended up two nights in the hospital PICU with suspected pneumonia as well. Liam and Taylor caught that cold too, and Liam is still on puffers because of a persistent cough from that cold. In February, all the triplets had a virus with fevers and vomiting. Then Malachi had another virus at the beginning of March with the beginning signs of pneumonia. Malachi also has had a couple bacterial trach and lung infections since we have been home (happens easily because the trach site is an open hole). During one of his bacterial infections in February, Malachi's suction machine failed and we needed to call 911 since our medical supply company was going to take an hour to get a new machine to us and manual suctioning was not enough for Malachi's secretions while he was sick. Thankfully, the situation turned out well. The paramedics came with their suction machine and got to meet Malachi in a stable situation. While we waited for the new suction machine to arrive, they discussed a few potential scenarios with us and gave us tips on how to direct the paramedics with our medical training and knowledge in an emergency. It was a blessing for us to have a bit of a "practice run", so that we know what to expect when we are calling 911 in a critical situation (although we pray that never happens).
And so, we are very excited that spring is here and cannot wait for the cold and flu season to be over! We look forward to getting outside more, seeing more of our families and friends, and making fewer trips to the hospital! We look forward to not only improved physical health but also improved mental and emotional health for us as parents.

How has the nursing situation been?
This question is a bit tricky to answer because it is a complex situation between the homecare nursing companies, Local Health Integrated Network (LHIN), government funding, and the politics that are wrapped up in it all. Let's just say that it has been a bit of a rough road to get consistent, trained, and reliable nurses and it continues to be an issue. Since we have come home, we have seen 19 different nurses in our home but currently have only 6 "stick" with us. Why such a high turnover? There are a number of reasons: three nurses quit because Malachi was too intense for them to handle, two moved on to different jobs, four nurses were let go because of issues with falling asleep on the job, three different nurses were let go due to dangerous mistakes they made, etc.

Do we have a lot of appointments still?
YES. Although we have occupational therapy, physiotherapy, and a dietician who come into our home to work with Malachi, we still have pediatrician appointments, RSV needles once a month (thankfully, the RSV season ends soon!), hearing tests (they have not been passing their hearing tests but likely because they are not cognitively able to do the test), eye exams (some concern with Malachi's right eye), neonatal follow-up screens, ENT appointments for Malachi, complex care appointments for Malachi (extra when he is sick), chest x-rays, head and abdominal ultrasounds for Malachi, blood gases, etc. We also have been referred to speech therapy, although we have been starting some sign language on our own.

On February 19th, the triplets turned "one year corrected". Although they were born on November 9th 2016, their due date was February 19th 2017 and they will be developmentally compared to their due date for a few more years. We are told by doctors and developmental workers that Liam and Taylor are doing surprisingly well for being 25 weekers, although they are still considered a little bit behind. Our happy little one-year-olds are not walking yet but Liam and Taylor walk along furniture and push around toys on wheels. These two love to chase each other, babble together, and play together. It's amazing and fun to watch them interact, and we look forward to Malachi being able to join in with them one day too. We try to let all the triplets play together during the day but it's a constant battle to keep all 3 babies off of Malachi's equipment! Liam and Taylor have now disconnected Malachi from his breathing machine a number of times and Malachi disconnects himself multiple times a day (and laughs and claps at us rushing towards him!). Liam and Taylor also officially can say a few words. Liam can say "burp" and "bye bye" and Taylor can say "oh dear" and "meow". We are still working on "Daddy" and "Mommy"! Liam and Taylor love eating as well, while Malachi has regressed a bit in this area and takes little by mouth anymore.

Our noisy and happy Liam 

It's important to get toys from the very bottom of the box!

Malachi's first time in a swing

At the end of every day, we thank God for each of our precious triplets and pray for good health and safety through the night. Every breath is a gift from him and in Him alone we continue to trust through all the ups and downs of this life.
"Whom have I in heaven but you? And there is nothing on earth that I desire besides you. My flesh and my heart may fail, but God is the strength of my heart and my portion forever" (Psalm 73:25-26).

Rennie Linde Photography