Day 236

Another 2 weeks have gone by since our last blog post and as we reflect on the last few weeks, we are thankful that not too much has changed. Except for the fact that our 3 miracles are growing way too fast..! This past week we managed to weigh all 3 of our babies on the same day. Malachi was 15lbs 2oz, Liam was 14lbs 11oz, and Taylor was 13lbs 9oz. They are now in 3-6 month clothing! We are thankful that they are all growing well.

The first picture ever with all of the triplets smiling! 

Liam:
Our handsome little man has been doing great these past few weeks! He is really starting to improve with his head and neck control, although he still does not love his tummy time. He loves to coo to himself (even at random hours in the middle of the night), and laughs easily. In the coming week, Liam has another head ultrasound to monitor the fluid around his brain, as well as a pediatrician appointment for his head circumference.

You talkin' to me?

Posing with our "Malachi Bear" from the organization called Tubie Friends

Taylor:
Our beautiful baby girl has also had a great last few weeks. She is such a strong girl. She can roll from belly to back and can pretty much roll from her back to her belly as well (just gets one arm stuck under her)! She is very curious and loves to look around at any noises or movement that she notices. In the coming week, Taylor has an eye doctor's appointment for follow-up, as well as a pediatrician appointment to monitor her weight gain and ongoing reflux issue.

Sleeping Beauty

Malachi:
Our other handsome little man has probably just had the most comfortable 2 weeks of his life. He is noticeably happier and more relaxed now that the right breathing supports have been figured out for him and he is not fighting any sicknesses or infections. He has way more energy since he is not putting so much energy into struggling to breathe with the ventilator and it's so fun to see him kicking and waving his arms and wiggling all over. He smiles easily and even giggles sometimes (without sound, of course). It is truly a huge blessing to see him breathing so comfortably and happily! It's also a huge weight off of us as parents. We have a more of a spring in our step because we know he is happier and more stable than he has been in so long.
Yet, Malachi's situation is of course still serious. He is still very much dependent on very high settings of life support. There were a few times still these past few weeks when he started turning blue and losing oxygen saturations but none of the incidents were "close calls" in the sense that a Code Pink was not called. (A Code Pink means that an emergency button is pushed and people come running from all directions to help resuscitate a baby who is essentially dying). The few incidents that Malachi had these past few weeks were mostly related to having a lot of secretions in his trach and needing a lot of suctioning to help him breathe again. Suctioning out the trach tube regularly is a normal part of having a trach. A non-trach-ed person is able to clear their throat or cough any mucous or wetness in their trachea. For someone with a trach, they are unable to do this, since the trach tube is in the way. The trach is also in the way of the vocal chords. The air that Malachi breathes in through the trach tube does not go past his vocal chords and therefore he cannot make any noise. It is so hard to watch him silently cry, sneeze, cough, coo, and giggle. We have included a little diagram below to illustrate where the trach goes.

In terms of moving Malachi from the NICU to the PICU, things are still in motion. The right equipment for Malachi is ready, but the respiratory therapists are working on refresher courses on the type of ventilation that he is on (NAVA mode of breathing support).
We are also taking a break from trach training (the course we are taking to train for taking Malachi home on the breathing support). This is because we are too far ahead of Malachi. The next steps are to take him on little walks in the stroller with some members of the healthcare team, and eventually on car rides as well. However, Malachi is not stable enough for this. So the plan is to take a break for a month or two and then start up again once Malachi is ready for the next steps or just to maintain the training we have already learned.
We are excited that Malachi is now allowed to sit up partway for very short periods of time. We as parents are allowed to gently hold him up a little (not all the way sitting) and watch him closely to see if he is tolerating it. So far he can only do short periods before he starts working harder to breathe but it is progress! We are excited for him to have new types of developmental opportunities over time.

Malachi laughing at his Daddy gives us tears of joy and sadness at his silent giggles!

Team Malachi at trach training. SO SO SO thankful for these ladies and their dedication!

We want to thank you all for your continued prayers for us and especially little Malachi. It's a long road and it is hard not to get discouraged and tired. This time of year especially has gotten us feeling a little down as our families and friends go on vacations and take some time on holidays. Yet we strive to remain positive and thankful for the rich triple blessings that we have. And we hold on to our God for the strength and comfort we need each day! As Isaiah 40:30-31 says: "Even youths grow tired and weary and young men stumble and fall; but those who hope in the LORD will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint".

Beyond thankful for Canadian healthcare!