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!