Well it’s been a while since our last blog so we will do our best to give an update on all that has happened in the last few weeks...
(We have done this blog post in bits and pieces when we have found some time here and there, so here is to hoping it doesn’t sound too disjointed...)
As most of you know, last week Friday on October 20th, the LORD suddenly called home Nathan’s brother and the triplets’ Uncle Ben at the age of 22. The pain is raw and fresh and deep... and the week that has just passed was gruelling and emotional and draining. Can we even capture in words the way we feel? We miss Ben deeply and still can’t believe he is gone. But we confess that it was the LORD God’s timing to take Ben to himself, and we know that he is heaven with God. He is in a better place by far and we will see him again One Day. The last time we saw Ben as a family was Thanksgiving Monday. It was that day that we took the first and only photos that we have of Uncle Ben holding Liam and Taylor and we will forever cherish them. We never did get one of Uncle Ben with Malachi. We also were able to take our last family photo that Thanksgiving Monday... another photo that will forever be dear to our hearts. Many people have told us stories of how much Ben adored our triplets, and it hurts so terribly to know that they will not grow up with their Uncle Ben. We will tell them stories as they grow up, and One Day they too will get to meet him in heaven.
Uncle Ben with Liam and Taylor
Our last family photo and our last photo taken of Ben
On September 26th, Malachi had his videofluoroscopy. Malachi was put in front of a live X-ray and given a few different types of puréed food mixed with barium. Using the X-ray machine, the specialists could see the food inside his body and therefore determine if he was swallowing correctly. We were so thankful that Malachi passed with flying colours! This means he is allowed to have puréed foods at home without medical supervision. Since the test, he has enjoyed various different types of food. It’s hard to explain just how amazing it is that a trached and vented (on a life support machine) baby can eat solid foods like Malachi can. For some doctors, it’s out of the question to attempt it. All doctors agree there are risks to doing it. Food can end up in the lungs for a number of different reasons. However, given that Malachi has shown he can swallow well with a trach, we are given the green light to continue with very puréed feeds for now, and not try anything crazy like chunky foods or liquids like formula.
Later that same day, we took Malachi for his first ever car ride. We drove with the whole family in our van. With our two strollers (One for Malachi and all his equipment), diaper bag (aka. suitcase!), 3 car seats, oxygen tanks, suction machine, ventilator, emergency equipment bag, oximeter, feeding pump, and the respiratory therapist who accompanied us, the van was FULL. It felt so strange to drive around as a family of five. In one way it felt natural. But in another way it felt wrong to have Malachi in there with all his equipment... what were we doing so far away from the hospital?! But everything went smoothly and no babies cried or pooped or spit up in the hour or so that we were driving (a small miracle in itself!)
On Friday September 29th, Malachi had his hydroceles repaired in a 2 hour surgery. We were so nervous coming back to the OR and going through the whole process of getting him ready for surgery. The feelings and memories were so vivid from his tracheostomy surgery in March. But our sweet boy came out of a successful surgery and was back to himself by the next day. He ended up having a hernia in addition to the hydroceles and the surgeon said he hadn’t seen a hydrocele that big in at least 10 years!
A few hours post-surgery
Then on Tuesday October 3rd, after 328 days in the hospital, our Malachi came HOME! What a day it was..! We said our goodbyes to the Ronald McDonald House who had housed us and fed us for all that time. We said our goodbyes to some of the NICU staff who were working that day. And we said goodbye to the PICU staff. We celebrated with cakes and the PICU staff even gave our babies presents. Everyone said they would miss Malachi and his big smiles for the staff. We certainly were blessed by such an amazing staff at the hospital. The care, dedication, and professionalism that they showed our sweet babies is forever imprinted on our hearts. We are so thankful to them. Not just for the routine medical work that they did, but also for the extras... keeping Malachi company when we couldn’t be there, playing guitar and singing for him, cuddling him, playing with him... we are so grateful. The medical staff at the hospital hold a very special place in our hearts.
Malachi’s Homecoming was an exhausting day. We had lots of people in and out of our home all day... and the next day... and the next day... and, well, you get the picture. Our home has been feeling a bit like a revolving door. There’s the transitional team from the hospital who continue to follow the triplets, the home care company with the various administrative staff and managers, the specialists and therapists, the home care night nurses, the medical supply company representatives, the ventilator equipment pool company representatives, the oxygen professionals...
On top of all the appointments and knocks on the door, the adjustment to taking Malachi home was intense to say the least. In the first few days we felt discouraged and despaired. We shed tears and wondered out loud if we could handle it all. We felt as though the mental heaviness and responsibility of caring for Malachi was too much for us to bear. There are no “breaks” with him. There’s no putting the baby in bed for a nap and collapsing on the couch to relax. He needs to still be watched CONSTANTLY- while he is sleeping too. But over time, the transition has become easier and the load feels more manageable. We are just taking it one day at a time and finding strength in our Heavenly Father each day again.
All ready to leave the hospital on Discharge Day
One evening a few nights after we came home, after we had put our sweet babies to bed in a flurry of activity and busyness and bath time and diapers and giggles and formula and little fists rubbing tired little eyes... the house was peaceful again. And we stood over Malachi’s bed and watched our baby sleep. His squishy cheeks and chubby hands and sweet face... tears came to our eyes. How is it that this sweet boy has survived after going through so much?! How blessed are we to have him?! He’s been rescusitated more times that we can recall. He’s had chest compressions, emergency chest tube surgery, code blues, serious infections and pneumonias... he is still on life support through a tracheostomy tube, diagnosed with chronic lung disease, is fed through a g-tube, and requires so much medical support. And yet... here he sleeps! In our own home surrounded by the ones who love him most. And we looked at our precious child and saw the love and prayers and support of so many others that brought him and our whole family through hard times. Under his head was a blanket made by Great-Oma D... his duckie blanket beside his head with his name embroidered on it from Aunt N... wrapped in a puzzle print blanket from Mrs S... a crocheted frog quilt draped on his crib from Aunt R... an octopus stuffie made by Mrs H... his sleep sack made by Grandma VW... soother clip from Nurse A and Nurse B... crib from our church family... He was truly surrounded by love.
With a lump in our throats we watched that sweet boy sleep and heard our other two precious babies stirring in their sleep in the next room. And our hearts swelled with deep thankfulness and a giddy joy. We were HOME as a family of five. Where we belong! We can stay in our home for the evening and snuggle babies on the couch. We can play with all three triplets on the floor. We can watch them interact together and laugh at each other and grab each other’s faces. What a precious feeling it all is! Sure, we have moments where we feel overwhelmed, anxious, afraid, and unqualified to care for Malachi. Those moments come up more often than not. But yet, when we stop and take a breath, then an overwhelming joy just rolls up like a wave and takes our breath away. How can it be that we have all three babies safe and sound at home?! How can it be that all 3 of our 25 weekers survived after ALL that they have been through?! How BLESSED we are! What an amazing God who has given us such amazing gifts in the form of our triplets!
Lunchtime
Then a week after we came home the triplets all caught the rhino virus cold. Taylor started with a snotty nose and we put her into extreme isolation... no toy sharing or play mat sharing or change area sharing, etc. It worked for a few days and then Malachi’s nose started running too. Our hearts sunk and visions of readmissions swam in our heads. However, all 3 triplets have done well with this particular type of cold. It does not seem to have impacted their lungs but stayed in their noses. Last Tuesday (October 17th) the hospital team suggested we take Malachi in to be assessed, as his oxygen requirements were climbing. After a fair amount of testing and examining, the team decided to send us home that day on higher pressures or settings on his breathing support machine. Technically, a step backwards. We were closely monitored every day, includimg by video conferencing from our home with the doctors in the hospital. Then the following Tuesday morning, we admitted Malachi to the hospital overnight. This was mainly because he was needing even more oxygen overnight and having oxygen desaturations once in a while during the daytime and naptimes. However, the timing of this readmission was not coincidental with the fact that the funeral and visitations for Ben were Tuesday and Wednesday. We are so thankful that the hospital staff were able to work out a bed for Malachi on these particular days. And so it was with relief and deep thankfulness that we brought Malachi to stay in the hospital so that we could attend the funeral and visitations. We will admit that it was emotionally hard to leave Malachi there (after all, we had worked so hard to get out of there for his while life, and had been discharged only 3 weeks prior..!) In any case, Malachi’s settings were again turned up overnight by 2. Thus, this cold has so far cost him 3 steps backwards on his breathing support and 3 hospital visits (we have another one coming up this week). It’s frustrating, and yet we are thankful he has been battling it so well! Respiratory illnesses and viruses can be fatal to kids with trachs and on life support, so we do not take it lightly. And we continue to pray fervently that our whole family can stay healthy this winter. All in all, it looks like Malachi is getting better, but time will tell. One of his doctors told us that the longer he fights it, the more likely it is that his immune system will weaken so that the cold will hit his lungs harder. Again, time will tell.
Side note: any readmissions to the hospital will be in the intensive care unit because Malachi is on life support... meaning, our home is pretty much an intensive care unit!
All in all, we have noticed huge improvements developmentally for Malachi. He is getting stronger every day. We see this in the way he can sit up with better posture (assisted still though), sits in the high chair with better posture, tolerated an exesaucer for longer periods of time, has learned to clap his hands, rolls around from side to side like crazy, and even is starting to scooch around on his back. He cannot roll onto his belly because his trach is in the way, so we need to get creative with tummy time and getting him to work his neck muscles by looking upwards. We need to work on this so that eventually we can work towards crawling (but not letting him collapse on to his trach). He is also enjoying trying different tastes and foods. Coming home has opened a whole new world for our little guy. He now has regular long naps and is noticeably happier because of it. (He had a hard time napping in the hospital with all the hustle and bustle and people coming in and out all day.)
First time in an exesaucer. Hard work for the little guy!
Could this smile get any bigger?
Such a happy and talkative sweetheart
As for Liam and Taylor, they are growing and developing like crazy too. They both are doing really well with sitting on their own. They both roll and wiggle all over the floor, and Taylor has just started to army crawl. It’s exciting to see them grow and develop. At the same time, we know our hands are getting fuller in a sense... this past week we had our eyes off Taylor for a second and the next second we looked and saw her tangled in Malachi’s oxygen tubing. She has also disconnected his oxygen already once. Liam and Taylor both love to chew on the cords and tubing as well. And so, we need to be more vigilant as they get more mobile and maybe think about play pens or fences.
All in all, it’s been a very intense month (year?) to say the least. We want to thank our church family and friends for all of their support and prayers. We have been given meals every night for which we are so thankful. The phone calls and texts and emails have been a great source of encouragement. A special thank you to those who came to Ben’s funeral visitations and/or funeral. It truly meant a lot.
And in all things we strive to look up to our LORD God, our Heavenly Father. The Bible text at Ben’s funeral was taken from Romans 8. Verse 28 reads as follows: “
What a tremendous comfort that our God is in control of all things. Nothing happens without His Will. There is purpose and there is meaning... even when we cannot see it and when the pain of death grips us. And so we hold on to the promises of God and bring all of our hurts and pains and struggles and heartaches to Him.
Our 3 Miracles
