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!