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