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."