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)
