Malachi Update and Baptism Plans

It hasn't been too long since our last blog but so much has happened with Malachi that we feel another update is appropriate.

In addition, we wanted to let our family and friends know that we plan to have baptism for Taylor and Liam take place next Sunday on August 6. Please ask us or our immediate family for details. It's going to be very emotionally difficult to do baptism without Malachi and it wasn't easy to come to this decision. We know that once he is discharged from the hospital it will not be wise to take Malachi into a crowd of people. We will most likely need to wait until at least next summer when colds and flus are less and Malachi is stronger and healthier, the Lord willing. And so with the guidance of our church's consistory, we have decided we will baptize Liam and Taylor while it is yet summer and wait a year or so for Malachi.

Superhero Day at the hospital

So what's new with Malachi? Well, a lot actually! This past week Malachi went outside the hospital for the very first time in his life! After 261 days, he was able to feel the sun on his skin and the breeze on his face. He made lots of funny faces when he felt the warm breeze which was quite funny to see. In order to get outside, Malachi took a ride in a stroller which was another first! It is quite the ordeal with lots of equipment to move the little guy anywhere. It's good practice for us for when we go home, though. Wherever Malachi goes he needs to have:

1) the breathing machine (aka ventilator) which is attached to Malachi'a trach via the breathing tubes 

2) enough battery backups for the ventilator 

3) oxygen tank (or more than one if he'll be out for a period of time)

4) suction machine and backup 

5) oximeter (monitor for heart rate and oxygen saturations in the blood)

6) "go bag" which includes all his trach equipment and the emergency equipment needed for if his trach tube ever came out, was blocked, etc. We have a list of items needed in the bag and it's long!

7) rescusitator bag for CPR 

8) his feeding pump and feeding bag

In the hospital we just attach it all to some carts and push and carry half of it. (Our first walk was with four healthcare professionals!) It works to push and carry between multiple people for now, but before we go home we will need a stroller that can safely carry Malachi and all his equipment (plus a diaper bag). This means we will need two strollers to take our triplets anywhere. 

First time outside!

Taking it all in

Daddy took Malachi out another day too!

Another requirement for Malachi to go on walks is to go on to a portable ventilator. There are different types of breathing machines and different modes or ways of breathing that each machine can do. Malachi will be on a portable ventilator 24/7 at home. Therefore we are very excited that Malachi can handle a home ventilator for an hour or so when he goes on walks. Yet another first! Soon, Malachi will be trialled on a portable ventilator (Trilogy) and hopefully stay off of the hospital ventilator (Servo-i). 

Another exciting development is that with smaller tubing and with Malachi's occupational therapy and physiotherapy, we are learning to move Malachi into different positions and to pick him up and hold him by ourselves (without a nurse or respiratory therapist)! This is huge. Imagine Jodi walking into Malachi's room in the morning, seeing that he is crying and just scooping him into her arms and comforting him without needing to call a nurse or respiratory therapist to help. Yep, she cried the first time that happened. It certainly takes practice and work and moving tubing and wires and careful positioning and planning... but we can finally gain some independence as parents. More than that we can give Malachi more cuddles and just have more normal parent-child interactions! 

With all these new developments the doctors are guessing that maybe Malachi can go home in 7-8 weeks! We are overjoyed and terrified and also keeping our hopes down (well, trying to!) as things can change so quickly yet. But we give all glory and thanks to God for all the improvements and miracles He has worked in our precious Malachi!

Happy baby #1

Happy baby #2

Happy baby #3

Our first family walk!

From NICU to PICU

These last few weeks have been very stressful and emotionally exhausting for us. This is because Malachi moved from the NICU to the PICU on July 12. A lot of people have asked us, "Isn't this a step forward for Malachi? Does it mean he is improving?" The answer is not really. The move was mostly due to his size and age. He was moved from the tiny baby intensive care unit to the child and teen intensive care unit. Here, there are children up to 18 years old. The average stay in the PICU is 3 days, whereas the NICU has longer average stays since most of the babies are premature and tiny. However, Malachi was also moved to the PICU with the thought that at some point he will be back in the ICU after he goes home (if/when he gets sick or if he has any complications with his trach). Thus, the PICU wanted to get to know him before his first discharge so that when he ends up back in the hospital they will already know his medical history and ongoing concerns. 

Playing in Malachi's bed

Liam:

Our playful sweet boy is so much fun. He smiles and laughs easily and loves to play with toys. This past week he rolled from his tummy to his back! Both Taylor and Liam can now roll over from their backs and their bellies. Liam's head ultrasound looked normal and his head circumference is also in the normal range, for which we are thankful! The checkups on his brain and head will be ongoing for now, but probably continue to be less frequent. 

Liam also had an appointment with an occupational therapist who was thrilled with his development and head control so far! We often hear healthcare professionals tell us how amazed they are with Liam and Taylor's development. They tell us that they never would have expected 25 weekers to be doing so well. We give all thanks and praise to God for this!

Such a happy little man!

Brothers

Liam in an outfit that his Daddy wore many moons ago

Taylor:

Our happy little girl continues to be smiley and content. She is very social and prefers people over toys. 

This past week Taylor had an appointment with a speech and language therapist. This was because she often whispers instead of cooing. She rarely cries and when she does it is very soft. She also makes wheezing noises often, which is called stridor. At this point they aren't too worried but it could be from having the breathing tube down her airway in her first month of life. This will have to be monitored so that if it gets worse, it will get checked out by ENT (ear nose throat) specialists. There is also some concern that her reflux is irritating her vocal chords. Again, it will be monitored for now. 

Taylor liked the cakes! (Made by Pie in the Sky Bakery)

Malachi:

As previously mentioned, our sweet little man moved to the PICU from the NICU. It was an emotional day. We left a lot of people that we had built relationships with... people who had cared for our babies when we could not. They were the people we entrusted our babies' care to. We saw them every day (except when we were sick) for over 8 months! They let us into the circle of care and educated us and empowered us when we felt helpless and afraid. They saw us go through the hardest times in our lives and they understood when so many others could not. So yes, there were tears that day... and not just our own! Malachi was a big baby compared to the other babies in the NICU which meant he was one of the only interactive and smiley babies. We would often walk into the NICU and see a number of nurses or doctors or other healthcare workers competing for smiles or playing with him. We knew he was well loved even when we couldn't be there. When we brought in Taylor and Liam for visits they had a bit of a "celebrity status" because everyone knew who they were and could remember taking care of them at some point. Taylor and Liam received lots of attention and cuddles whenever they came in! 

We are so deeply thankful to the NICU staff for everything they did for us and our triplets. They truly went above and beyond their job descriptions in many ways. We saw compassion, gentleness, and loving care for our babies. They have left lasting impressions on our hearts. God truly worked miracles through them in saving our triplets' lives!

The move brought many changes and stress for us. We were surprised to discover that there is a whole different philosophy of care in the PICU. Their patient population is very different and so their mentality is also different. It is fast-paced. Within a few hours of being in the PICU we felt the pressure to immediately start making changes for Malachi. In the past 10 days, Malachi has had his first bathtub experience, first tummy time with a trach, first time on the floor/ mat, first time in a bouncy chair, sat up for longer than ever in his life, and has had major changes with his ventilation. He has come off of the NAVA mode of ventilation and onto Pressure Control auto mode. For those

interested his PEEP has come down from 14 to 10 on the NAVA, before switching to Pressure Control with a PEEP of 10 and PC of 16. With all these new changes, our instinct has been to stomp on the brake pedal and slow things down. After all, Malachi has never been challenged like this before... and the PICU staff has only just met him... What if he crashes or collapses a lung..? But as the days have passed, we have started to breathe easier and trust that this team too knows what they are doing. Malachi is at the point where he is ready to be challenged so that we can move towards taking him home. If it is too much for him, then his cues will tell us and the staff. At the same time, we are doing our best to be with Malachi as much as possible and advocating for him so that the team knows him well and makes the best decisions for him. And so, it's been an emotional and draining week!

With all the new changes and steps forward that Malachi has been making, the team has been talking about moving along in planning for home. There is so much involved... tons of medical supplies, applying for some homecare nursing, insurance, applying to all the different medical supply companies for the various equipment Malachi will need, disability pensions, trach training and g-tube training, meeting with the EMS team in our area to briefly educate them on Malachi in the case of an emergency... this all is confusing and a lot of work too! 

Thankfully, Malachi is doing really well. He has been losing weight ever since the transfer but this likely due to all his extra activity. He also is at times crankier and working harder to breathe, but this is part of him working his muscles and getting stronger (again, this is part of the new mindset for his care that we need to get used to). 

Malachi's new chair

First time on the ground

First tub bath (yes, it takes 3 sets of hands!)

Grandma snuggles

Working on neck muscles and sitting

And so, we continue to ask for your prayers. It feels like we are running a marathon at times. Nathan is back to full-time work for the time being and that is harder on both of us as parents. It's hard for Nathan to come home at the end of the day and spend more mental and physical energy at the hospital. It's hard for Jodi to be at the hospital every day alone. And it's hard for both to be apart because we rely on each other for emotional and mental support. 

We are also, of course, thrilled to think about going home potentially in the next months. What a homecoming that will be! Our temporary lodgings are a beautiful gift for which we are forever grateful, but there is no place like home. And there's nothing like being home together as a family. 

With the excitement is deep fear too. We will be taking home a baby on life support! We will need to have all the details and training and organization figured out because it is crucial to his survival. What a daunting task. 

Recently we read from Romans and a text jumped out at us: "Rejoice in hope, be patient in tribulation, be constant in prayer..." (Romans 12:12). It sums up perfectly what we needed to hear. Our God is with us through it all!

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!