The Triplets Turn One!

On November 9th, our three miracles turned one! What an emotional day it was for us. We looked back on pictures from the last year and were moved to tears to see how far they’ve come... how tiny they were, what they’ve all been through, the multiple surgeries, the many infections and IVs, the breathing support machines and modes and settings, Taylor’s transport to a different hospital, Liam and Taylor learning how to feed, Malachi’s trach surgery and difficulties, and finally taking him home on life support... what a year! Celebrating the first year of our triplets' lives was something we did not take for granted. We thank the LORD for preserving life and granting us a year with our beautiful triplets!

Birthday Babies!

Liam holding a pretty much life-sized photo from the day he was born at 1lb 15oz

Taylor was 1lb 10oz on her birth day

Malachi was 1lb 15oz 

In general, the triplets have been doing very well in the last few weeks. They are now 9.5 months corrected and are growing and developing quickly! Their personalities are coming out more and more each day and it is so fun to see. It's also so exciting to see them meet all their different developmental milestones. Naturally, Malachi is behind his siblings due to all the time he spent on his back in the hospital, but that just makes his milestones that much more exciting to celebrate!

Wearing sweaters from our church ward

Busy babies

Liam:

Our Liam is still a happy, easygoing, and noisy little man. He loves to "sing" and babble and laugh. He is the heaviest triplet and loves to eat. He still has not started crawling but has recently started to try a little bit. He likes to roll all over the floor- that is how he gets around. When we sit him up, he likes to lounge back onto the pillow and put his feet up on the other side of the U-shaped pillow. He makes us laugh- he is just so relaxed and easygoing!

Falling asleep on Grandpa F. Birthdays are hard work!

Taylor:

Our sweet girl is developing quite the big personality. She loves to make all sorts of faces and lets us know what she wants with her facial expressions and noises. She army crawls everywhere and loves to make a beeline for Malachi's tubing and oxygen cords. (Don't worry, we do have a playpen!) She is by far our smallest triplet but is pretty much the same height as her brothers.

One of her many hilarious expressions

First time in the snow

Malachi:

Our Malachi has been thriving at home as well. He is usually smiley and content wherever he is. He is really getting good at assisted sitting, but isn't quite able to sit by himself like his siblings yet. He also loves to stand (assisted of course) and has recently started rolling over on to his tummy and back on to his back! It makes for a tangle of tubes and cords and everyone rushing at him to flip him back off his trach and tubing but we still cheer for him because developmentally it is a good thing. We notice improvements in Malachi's development every day. He gets physically stronger and can do things for longer periods of time. His home therapists are always impressed with him when they see him and have started to space out his appointments a bit more (hooray!) 

A few weeks ago, Malachi developed an oral aversion and no longer wanted to eat anything by mouth. We worked closely with his occupational therapist and he has since mostly overcome it and will again eat very pureed foods by mouth.

As for the more medical and technical aspects of Malachi's breathing support... he is still on higher settings than when he came home because of his cold. We hope to visit his pediatrician and complex care team this week to get some bloodwork to assess his blood gases (CO2 in the blood, etc.) and hopefully be able to turn down the amount of support he is getting by a very small amount. We know it will take a long time to slowly wean off of the breathing support (likely multiple years), so we are struggling to stay patient and thankful for the tiny steps we do get to take. Every day we pray that he can continue to take steps forward and avoid all colds, flus, viruses, hospitalizations, and setbacks. Malachi was also able to exchange a piece of tubing in his circuit for something a bit better (for those interested, he now has a whisper swivel instead of an exhalation port). This is great because our busy boy was pulling a piece off of his exhalation port and putting it in his mouth - a major choking hazard! He was also constantly plugging the hole, meaning he couldn't exhale which is very dangerous. And so, the fact that he was able to tolerate the whisper swivel is another thing to celebrate! 

Looking very serious about trying to sit by himself

Post-bath snuggles with Daddy

Sweet dreams

Something we get asked a lot is whether or not our triplets got the flu shot. The answer is yes- the whole family did. We won't get into any vaccination discussions... but we will share something we learned this year. We learned that the flu shot is not for the stomach flu where you throw up and sit on the toilet for 24 hours. Rather, the flu is really a respiratory virus (influenza) - the kind where you get chills and aches and a cough and a sore throat, etc. Naturally, this would be dangerous for our triplets and we have heard stories of babies like Malachi in very critical condition because of the flu last year. 

The triplets also get the RSV (respiratroy syncitial virus) needles every month for five months. It is so hard to put them through that sort of pain every month and they cry a lot! But again, we are choosing what we believe is safest for our babies right now. 

Some people have also been asking about whether or not we hired a nanny. The answer is yes - and we are so very grateful for her! She is truly an answer to prayers and has fit in very well into our home. As an experienced mother and grandmother herself, her care and love for our babies is beautiful to see. Her hours are when Nathan is at work, since we need to have 2 adults at home. This is so that a) there is enough caregiving for each baby, since Malachi requires a lot of time and specialized care and b) so that we can drive places during the day (for example, to appointments) or to the hospital in the case of an emergency. One person needs to sit beside Malachi in the backseat: to monitor, suction, and for emergency purposes. Our nanny is not trained on the trach and vent, so the responsibility is on Jodi to take care of Malachi during the day. 

A nurse comes each night to take care of Malachi while we sleep. However (and this is in response to another question that we get a lot), this does NOT mean that we can leave the house. As parents, one of us ALWAYS needs to be with Malachi or at least in close vicinity. The homecare nurses do not have a lot of training or experience with trachs, babies, and vents. We train them on the basics of Malachi's care, but we need to be close by in case of any emergencies. There have been many times when we have been woken up in the middle of the night with a knock on our bedroom door, or a yell, or the sound of alarms... we race out of bed and quickly step in and take over. None of these incidents have ended up being very serious but they have still been serious enough that we needed to be there. We tend to sleep with one ear open and can wake up quickly if something is wrong. 

And so, in that sense, we don't really get a "break". Our moms are often over to help out and they are very knowledgeable in Malachi's care as well. But the bottom line is that we will not leave Malachi with anyone else besides one of us parents because it simply is not safe should an emergency occur.  

It's been over 2 months that we have been home from the hospital. In many ways we have settled into our routines and are enjoying life at home with our triplets!

In other ways, it has been difficult to adjust as the long-term realities hit us. It is hard for us as parents to get alone time, especially since we can never get out of the house with just the two of us. Some days it feels like we have a constant flow of people and nurses and therapists. Some days our cellphones never stop ringing with case coordinators, therapists, hospital staff, medical companies, and pharmacists. It is always busy in our house between the 3 babies needing diapers, bottles, naps, baths..! By the time they are all in bed, it is usually time for our nurse to come and we need to go over everything with the nurse. Malachi's care can be exhausting... especially mentally. We always need to have eyes on him - even when he is sleeping. We always need to be ready for an emergency. And to be honest, we don't get out much, even with the babies. We are very isolated because we need to avoid germs to keep our babies healthy and out of the hospital. We haven't seen some of our family in weeks. Some nights we don't have nursing coverage and one of us has to stay up all night with Malachi. Some nights our babies wake up in the middle of the night crying and some nights they wake each other up and some nights they don't want to go to sleep... 

But at the end of the day we are thankful. Thankful to be out of the hospital. Thankful to have 3 beautiful babies at home. Thankful for family and church family support. Thankful for the communion of saints who brings us meals every week. Thankful for our warm and wonderful home. Thankful to God for so many blessings. 

Can't look at this one without smiling back!

Wagon rides with Grandma VW

Going for an afternoon walk

October 28, 2017

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

As for Malachi, lots has happened since our last blog post. We will try to summarize:

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: “And we know that in all things God works for the good of those who love him, who have been called according to his purpose." 

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

8 Days to Discharge

We are so thankful to God to report that everything seems to be falling into place for a discharge date of October 3rd! By the end of this week, a number of home nurses from our area should be trained on tracheostomies, ventilators and g-tubes. Community referrals are being sent out, appointments are being booked, last minute tests are being performed, and loose ends are getting tied up. Malachi also will go for surgery on Friday. More on that later. If everything falls into place, we could be HOME as a family all together under one roof in 8 days! PRAISE GOD!

Liam and Taylor:
The Great Triplet Tooth Race has started and finished in a matter of 11 days! Liam popped his first tooth on Wednesday September 13th. Malachi came in second place with a tooth on September 22nd, while Taylor came in a close third 2 days later. It's so fun to see all the similarities and differences in their development every day.
This past week Liam and Taylor had a Growth and Development appointment which was to assess their overall development because they were born at 25 weeks. The clinic follows them for a few years, since research shows that a lot of delays and issues can come up for micro preemies in the first few years of development. The appointment this past week went very well, and the doctor was very impressed. Both Liam and Taylor do not have cerebral palsy, which they were being monitored for, and are on track for their corrected age developmentally. We are so thankful for all this news!
We also had all the triplets weighed on the same day. Liam is the heaviest weighing just over 17 pounds, Malachi is in the middle at just over 17 pounds as well, and Taylor is a whole pound smaller than her brothers at just over 16 pounds. She is also generally in a size of clothing smaller than her brothers although very close to catching up.
When we look ahead to going home, our hearts nearly burst when we imagine all 3 of our babies playing together and interacting. We feel like crying for joy to think that we can be together as a family all the time! Jodi won't need to leave Liam and Taylor with babysitters every single weekday, or leave Malachi in the hospital every single day to go back to care for Liam and Taylor. We won't need to split up at night so that one of us is with Malachi and the other with Liam and Taylor. We can play on the floor with our babies. We can eat meals together. We can just RELAX as a FAMILY all together. What an amazing feeling it will be!

Malachi:
On Sunday September 17th we were overjoyed to receive a "day pass" to take Malachi with us to the Ronald McDonald House for 5 hours. It took almost 2 weeks of asking about 300 different doctors and administrators and managers, etc. before we got the approval (okay, 300 is an exaggeration... but you get the idea). By the time we got the green light we almost chickened out! Could we take care of him (and Liam and Taylor) all by ourselves for 5 hours? Could we manage his equipment? Could we manage an emergency? But we pushed through with the plan and took our little guy to our room at the Ronald McDonald House. It was hard to figure out how to set up all his equipment and where to put everything and plug it all in where the triplets wouldn't immediately reach for or put in their mouths... that will be a never ending problem for us! Once we were finally starting to feel comfortable, Malachi threw up all over himself (he does this more often) and needed trach care. While we were in the middle of trach care, Liam started crying for a bottle, and Taylor started spitting up in her jolly jumper... it was busy! But we loved it. We snuggled Malachi on the couch and took pictures of all 3 triplets together. It was wonderful!

A Dad and his boys cuddling on the couch

Another exciting recent development is that Malachi now has an uncuffed trach. A cuffed trach tube is one that has a bubble that can be filled with water to seal the airway and fill any spaces around the trach tube in the trachea. Now that the cuff is gone, there is some space around the trach tube that means some air can pass up from the lungs and through the vocal chords and out of Malachi's mouth or nose. And that means Malachi can make some small noises! On September 15th Jodi heard his voice for the first time since March 30th... yep, she cried. Nathan heard him the next day. It is most likely uncomfortable for Malachi to make noises and he hasn't quite figured out how he can do it. So we don't hear his voice every day but once in a while when he is very relaxed he will make little cooing noises. We hope so badly that he will continue making noises and even try make more sounds but time will tell.
In terms of discharge planning, Malachi has his swallow study planned for tomorrow! We are praying he will pass so that we can feed him solids orally at home, in addition to his g-tube for liquid (formula). If he fails, then we won't be able to feed Malachi anything in his mouth until his trach comes out for good, which is likely 2-3 years. In addition to his swallow study tomorrow, we will be taking Malachi for his first car ride! This is mostly a test for us as parents to see how we will fit all the babies and equipment safely in the van. A trained person also needs to be sitting beside Malachi in the car to suction or respond to him if need be. Malachi still has a chest x-ray this week as well. He recently received his trachea scope and everything looked well with very minimal collapse (tracheomalatia). However, a recent ultrasound determined that Malachi needs to have surgery on his hydroceles. The surgery is considered "minor" and is scheduled for this Friday. It should not delay discharge if all goes well. We admit we are extremely nervous about the surgery because the last time that Malachi had surgery we almost lost him.  Granted, that was a major surgery on his airway, and nothing at all like the corrective surgery coming up. But all the memories and emotions and flashbacks of that traumatic day are flooding back to us when we think about Malachi having surgery again and being put under again for a few hours. We hope and pray that all will go well and we also covet your prayers for our Malachi. 

With all the discharge planning and looking ahead to going home, we have been reflecting a little on the last year and all that has happened. We admit that it is hard not to be negative... hard not to think we have "missed out" on so much. We have not slept in our own home for months and months... we have not been able to have a vacation or go camping or go swimming... we have been at the hospital every single day... we have split ourselves up between our babies every day... we miss our family and friends... we miss just the every day normalcy of family life! It's hard not to wonder why all this had to happen. Why did God allow this all to happen? Why were the triplets were born so early? Why did Malachi have to have the trach? Why do we need to take Malachi home with all this medical equipment and stress? Why did we have to have such close calls with death multiple times? Why did we have to have so much stress and worry and intensity in our lives? Why do we have to now have a constant flow of people (home nurses, therapists, dieticians, etc.) in our home? And yet, we need to see the positives. There are so many blessings that have emerged from this past year. We need to reflect on how we have three gorgeous and happy babies. How God has miraculously spared their lives multiple times. How they are developing so well and gettting stronger and healthier every day. How our triplets have touched many lives and how we have created many relationships at the hospital. How soon we will be going home as a family. Such rich blessings. We see every day how little things that we may have taken for granted are that much more rich and beautiful to us. When we hear Malachi's voice we cry. When we see him eat peas we choke up. When we hold the triplets up and they try to stand on their little legs we marvel. When we see their individual personalities shine through we are amazed. And then we think, "God HAS been good to us." Yes, this has been by far the most difficult year of our lives. And the next year is going to be incredibly hard and stressful too. But we are so incredibly and deeply blessed to be taking our sweet triplets home in 8 days. 

"Know that the LORD, he is God! It is he who made us, and we are his; we are his people, and the sheep of his pasture. Enter his gates with thanksgiving, and his courts with praise! Give thanks to him; bless his name! For the LORD is good; his steadfast love endures forever; and his faithfulness to all generations." (Psalm 100:3-5)

A few family photos taken by a professional photographer from the hospital

Day 309

A lot has happened since our last blog post! It seems like each day we take more steps to getting Malachi home. We are constantly communicating with what feels like a thousand different people… whether the team in the PICU, the complex care team that will be monitoring the triplets and especially Malachi at home, the LHIN (formerly known as CCAC), the home coordinators working in the hospital, insurance companies, etc. We are finding that there are some disconnects and issues that take up a lot of time and sorting out. Right now, our biggest hurdle is finding home care nurses, as the hospital will not allow us to go home without filling a minimum number of shifts. We were initially told that we would have 5 shifts a week covered by the community nursing program, but recently we have heard that we may have 7 shifts a week covered! This is great news and we are really hoping and praying this to be true. However, so far we do not even have one nurse trained and ready. Malachi is the first ever trached and vented (on breathing support) child in the area that we live in, and this is part of the challenge in finding nurses. Anyways, enough of the boring logistics and on to the update on each triplet…

Sweet dreams

Liam:

In the past few weeks our sweet Liam seems to have been fighting a gastrointestinal virus. (Some people suggest he might be teething, but the doctor thinks its a virus). It is not a respiratory virus and we are very thankful for that. He is still his happy and playful self. He loves to play with his feet, whether in his mouth or rubbing them on different textures. He loves to eat the solids we have given him so far and hardly needs a bib because he eats it so well.

We have been keeping both Liam and Taylor away from the PICU and their brother, while Liam is fighting this virus. We are excited to reunite them once he is better. However, as we go into fall and the cold/flu season, we anticipate that we won’t be bringing the other two triplets in as often to visit. The PICU is full of “community” germs, and we are told that a lot of ex-preemies come back in the fall and winter with sicknesses that their little lungs can’t handle yet. We know that ours are at risk and so we need to be careful. This is also why we are starting to feel a bit more urgency in getting Malachi home. We need to get him away from the hospital germs and into a germ-free “bubble” at home.

Can you hear his giggles and coos?

How are they 10 months old already?!

Taylor:

Our happy princess continues to do well. She hasn’t caught Liam’s virus but we have been very faithful with handwashing between babies. She is getting better with eating solids but still makes funny faces and spits out a lot. She has always eaten way less in general than her brothers, so we anticipate we may have a picky little girl on our hands!

Cuddle-bug

Malachi:

Our handsome Malachi has been busy! Last week he tried solids for the first time! This is a big deal for a trached and vented baby who has never been able to feed orally (aside from a few drops of medication, breast milk, and formula). It is pretty dangerous to “experiment” with trying to feed him orally because of the danger of aspirating. Further, it is different to eat with a trach. For instance, there is some pressure on the esophagus because of the trach. However, the occupational therapist and healthcare team feel as though he will be able to handle oral feeding because he loves to put things in his mouth and seems to swallow his saliva, formula, and medications well. At this point, we are giving him tiny tastes. As the tastes get a big bigger in volume and Malachi is taking more in, it will be time to go for a swallow study. A swallow study is like a live x-ray during which Malachi will eat a bit of food mixed with barium. The team will be able to determine if any food is getting into Malachi’s trachea and lungs. If this is the case, Malachi will not be allowed to eat any solids until his trach tube is out. We are excited and hopeful to see what the next few weeks will determine! We are so very thankful that Malachi does not have an oral aversion, which was and still is highly probable for all preemies and especially babies with medical needs like Malachi.

First time trying carrots!

Another exciting development is that we have reached the point in our training where we are allowed to take Malachi on walks all by ourselves! This is thrilling. For the first time ever on August 30th, Nathan was alone with his baby boy while they went for a walk around the hospital. And then on August 31st, it was Jodi’s turn. Since then, we have been daily enjoying our newfound freedom and learning to take on the responsibility without any healthcare professionals watching us. It is definitely reassuring, though, that we are still in the hospital should anything happen.

Mommy's first time going for a walk alone with Malachi

Speaking of learning to take on the responsibility of Malachi’s care… this past weekend we were able to do our “care by parent” which means that we took care of Malachi in the hospital for 48 hours straight. It was exciting and nerve-wracking to prepare for home in this way. It was also exhausting to have to stay awake for that long. We took shifts so that we both were able to sleep 4 hours each the first night and 5 hours each the next night. Malachi’s daily care involves a lot of things like:

• Trach care or cleaning twice a day at 8am and 8pm
• Medications at 8am, 12 noon, 4pm, 6pm, 8pm, midnight, 4am, and 6am
• Puffers at 8am and 8pm
• G-tube feeds at 8am, 12 noon, 4pm, 8pm, midnight, and 4am
• G-tube flushes and cleaning of the feeding bag an hour after every feed
• Venting the G-tube (essentially burping Malachi by pulling air out) at least twice every 4 hours
• Changing his humidifier bag at least once a day
• Suctioning out his trach tube at least once every 4 hours when sleeping but multiple times in an hour when he is awake
• Switching him on to different equipment every time he gets to go somewhere (whether for a walk in his stroller or even to a different room in the house). This includes a different “dry” ventilation circuit, oxygen tank, and humidifier filter. It also means lugging around his suction machine, ventilator, oximeter, and emergency equipment wherever he goes.

There's the daily care, but then there are also the weekly and monthly tasks, mostly involving cleaning equipment, replacing parts, and changing the trach. In addition to all the physical care, it takes a lot of mental energy to be constantly aware of him. Are his numbers okay? Is he still connected properly to the ventilator? Is he plugging his exhalation port (one of his favourite new activities)? Is he pulling on his G-tube or suction catheter or tubing and chewing on it (another favourite activity)? Is his blood oxygen level okay? Why is his oximeter or ventilator alarming? Is his emergency equipment close by? Even going to the bathroom requires figuring out… can I hear his alarms from in the bathroom or should I bring him with? Things can change so quickly because he is dependant on his trach and vent.

As exhausting as it was to do the 48 hour “trial”, we could really tell that Malachi was soaking in the extra attention. He was nothing but smiles. What a happy little guy he is! He has lots of nurses in the PICU who call him their “boyfriend” and he gives out smiles freely much to everyone’s delight. We sure missed our other two triplets, but their grandparents took excellent care of them. We are so hugely grateful to them for all their help and support. We simply could not do it without them.

The Care by Parent also marked a graduation for us as parents. We are finally finished our training! We only need to go for a car ride with him, which will be done a day or two before discharge. So now we need to patiently wait for the home supports to fall into place before we can go home! We are still aiming for September 28th, although it is seeming a bit unlikely that we will have nursing lined up by that time. Time will tell.

Finally, we want to say thank-you to Nathan’s sister Corrine for setting up an online fundraising page for our family (https://www.youcaring.com/malachivanwoudenberg-943706). Malachi comes with a lot of financial stress and we are so deeply grateful to those who have already donated to support us! We will admit that it is a very hard thing to publicly need help in this way. Not just financially, but in general. We often feel like a “burden”. We have a lot of needs and we can’t do it without support. But we also strongly feel our church family and friends and family surround us and uplift us without complaining. We are so incredibly thankful that God gives the communion of saints to support one another. And one day in the future, we can be there for others just as they are there for us today.

My soother is my favourite!

Daddy is my favourite too!

Cool dude

We are pretty sure we have posted the hymn "Great is Thy Faithfulness" before, or the Bible text from the book of Lamentations that it is based on. However, it is a great source of comfort to us and so we will post a few verses again. Our God is with us every step of the way and providing us with our daily needs. Every morning again we wake up and its the same tiring schedule... back to the hospital and bouncing back and forth between babies and meetings and discharge planning and learning and work. But each day He provides strength and courage to face the day!

             

“Great is Thy faithfulness,” O God my Father,

There is no shadow of turning with Thee;

Thou changest not, Thy compassions, they fail not

As Thou hast been Thou forever wilt be.

               

“Great is Thy faithfulness!” “Great is Thy faithfulness!”

  Morning by morning new mercies I see;

All I have needed Thy hand hath provided—

 “Great is Thy faithfulness,” Lord, unto me!

Summer and winter, and springtime and harvest,

Sun, moon and stars in their courses above,

Join with all nature in manifold witness

To Thy great faithfulness, mercy and love.

Pardon for sin and a peace that endureth,

Thine own dear presence to cheer and to guide;

Strength for today and bright hope for tomorrow,

Blessings all mine, with ten thousand beside!