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!