Day 236

Another 2 weeks have gone by since our last blog post and as we reflect on the last few weeks, we are thankful that not too much has changed. Except for the fact that our 3 miracles are growing way too fast..! This past week we managed to weigh all 3 of our babies on the same day. Malachi was 15lbs 2oz, Liam was 14lbs 11oz, and Taylor was 13lbs 9oz. They are now in 3-6 month clothing! We are thankful that they are all growing well.

The first picture ever with all of the triplets smiling! 

Liam:
Our handsome little man has been doing great these past few weeks! He is really starting to improve with his head and neck control, although he still does not love his tummy time. He loves to coo to himself (even at random hours in the middle of the night), and laughs easily. In the coming week, Liam has another head ultrasound to monitor the fluid around his brain, as well as a pediatrician appointment for his head circumference.

You talkin' to me?

Posing with our "Malachi Bear" from the organization called Tubie Friends

Taylor:
Our beautiful baby girl has also had a great last few weeks. She is such a strong girl. She can roll from belly to back and can pretty much roll from her back to her belly as well (just gets one arm stuck under her)! She is very curious and loves to look around at any noises or movement that she notices. In the coming week, Taylor has an eye doctor's appointment for follow-up, as well as a pediatrician appointment to monitor her weight gain and ongoing reflux issue.

Sleeping Beauty

Malachi:
Our other handsome little man has probably just had the most comfortable 2 weeks of his life. He is noticeably happier and more relaxed now that the right breathing supports have been figured out for him and he is not fighting any sicknesses or infections. He has way more energy since he is not putting so much energy into struggling to breathe with the ventilator and it's so fun to see him kicking and waving his arms and wiggling all over. He smiles easily and even giggles sometimes (without sound, of course). It is truly a huge blessing to see him breathing so comfortably and happily! It's also a huge weight off of us as parents. We have a more of a spring in our step because we know he is happier and more stable than he has been in so long.
Yet, Malachi's situation is of course still serious. He is still very much dependent on very high settings of life support. There were a few times still these past few weeks when he started turning blue and losing oxygen saturations but none of the incidents were "close calls" in the sense that a Code Pink was not called. (A Code Pink means that an emergency button is pushed and people come running from all directions to help resuscitate a baby who is essentially dying). The few incidents that Malachi had these past few weeks were mostly related to having a lot of secretions in his trach and needing a lot of suctioning to help him breathe again. Suctioning out the trach tube regularly is a normal part of having a trach. A non-trach-ed person is able to clear their throat or cough any mucous or wetness in their trachea. For someone with a trach, they are unable to do this, since the trach tube is in the way. The trach is also in the way of the vocal chords. The air that Malachi breathes in through the trach tube does not go past his vocal chords and therefore he cannot make any noise. It is so hard to watch him silently cry, sneeze, cough, coo, and giggle. We have included a little diagram below to illustrate where the trach goes.

In terms of moving Malachi from the NICU to the PICU, things are still in motion. The right equipment for Malachi is ready, but the respiratory therapists are working on refresher courses on the type of ventilation that he is on (NAVA mode of breathing support).
We are also taking a break from trach training (the course we are taking to train for taking Malachi home on the breathing support). This is because we are too far ahead of Malachi. The next steps are to take him on little walks in the stroller with some members of the healthcare team, and eventually on car rides as well. However, Malachi is not stable enough for this. So the plan is to take a break for a month or two and then start up again once Malachi is ready for the next steps or just to maintain the training we have already learned.
We are excited that Malachi is now allowed to sit up partway for very short periods of time. We as parents are allowed to gently hold him up a little (not all the way sitting) and watch him closely to see if he is tolerating it. So far he can only do short periods before he starts working harder to breathe but it is progress! We are excited for him to have new types of developmental opportunities over time.

Malachi laughing at his Daddy gives us tears of joy and sadness at his silent giggles!

Team Malachi at trach training. SO SO SO thankful for these ladies and their dedication!

We want to thank you all for your continued prayers for us and especially little Malachi. It's a long road and it is hard not to get discouraged and tired. This time of year especially has gotten us feeling a little down as our families and friends go on vacations and take some time on holidays. Yet we strive to remain positive and thankful for the rich triple blessings that we have. And we hold on to our God for the strength and comfort we need each day! As Isaiah 40:30-31 says: "Even youths grow tired and weary and young men stumble and fall; but those who hope in the LORD will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint".

Beyond thankful for Canadian healthcare!

4 Months Old Corrected

The triplets turned 7 months old on June 9th! Today on June 19th they are 4 months old corrected. This past week we looked back on some photos from when they were just born and were blown away by how far they have come! The LORD has truly worked miracles!

Liam:

Our sweet Liam has been growing and thriving these past few weeks. His head ultrasound results have come back as normal, for which we are thankful. He has another one coming up and continues to be monitored bi-weekly with head circumference measurements. He's still very smiley and starting to become more and more playful. He has been increasingly showing us that he cannot skip or delay nap time... or else a meltdown may occur! This is not the easiest issue to deal with considering all the appointments he gets taken to each week but hopefully these appointments will slow down soon. The Growth and Development team is currently monitoring Liam's neck strength, since he can just barely lift his head when laying on his belly. This means Liam has homework exercises every day.

On Friday all 3 babies got their routine vaccinations and we also found out that all the triplets qualify for the   government funded RSV needles next season (November to March). This is great news, because although technically only Malachi qualifies due to his health complications, the other triplets qualify in order to protect their brother (though they too are vulnerable). 

On that note, we would like to clarify Liam and Taylor's ongoing concerns or vulnerability because of some recent questions we have received from family and friends. Both triplets have chronic lung disease just like Malachi, although obviously not as severe. Chronic lung disease (CLD) is also called bronchopulmonary dysplasia (BPD). Taylor's is considered mild, Malachi's severe, and Liam's somewhere in between. Their lungs will grow bigger like every child's until the age of 8-11 years old. The new lung tissue will be healthy and so over the years they will have mostly healthy lungs. However, the lung tissue that is damaged now will NOT heal- it stays damaged. Because their lungs get bigger they should not "notice" the damaged tissue anymore. The severity of Malachi's chronic lung disease means that he most likely will notice it throughout his life. For example, he may have asthma or he unable to run for very long before getting winded. Until all of the triplets get bigger though, any sickness is a bigger deal for them. Any sickness will put stress on their body and make them work harder to breathe which means they could need to go back on oxygen or even breathing support. This is especially the case if they were to get a respiratory illness like a cold. For example, the Rhino virus (common cold in healthy persons) and pneumonia have been fatal to some kids with BPD or CLD. Thus, as parents we will need to be very careful for the next few years to protect our babies from sicknesses. This means lots of hand washing, "screening" our visitors to ensure they are healthy, and not taking our babies to public places where they might be exposed to sicknesses. Of course, there is the added layer that if one triplet gets sick, then the others are at higher risk. And if we as parents get sick, then we cannot visit Malachi in the hospital and will need to be extremely careful around Liam and Taylor. We hope that those around us can understand the caution that we need to take. 

1 Day Old vs. 7 Months Old

Taylor:

Our happy baby girl is still just that... happy. Her weight gain has been great these past few weeks, though her reflux is still an ongoing issue and is still being monitored. This past week, the endocrine team (essentially hormone team) said they didn't need to see Taylor again because she looks healthy from that perspective! The Growth and Development team are very pleased with Taylor's strength and development so far as well. 

1 Day Old vs. 7 Months Old

Malachi: 

Our youngest darling is growing still so quickly! This is a good sign because this means he is not burning all of his calories on trying to breathe. This past week he transitioned off of breast milk and on to formula but is still growing very well. Jodi was able to give Taylor 5 months supply of breast milk, Liam 6 months, and Malachi 7 months before it became too much to manage. 

From a respiratory perspective Malachi has not made any real improvements these past few weeks except that he has stayed on the same ventilator (breathing machine) settings! Essentially, that IS an improvement for Malachi. It seems we have finally found a "baseline" where he is able to breathe comfortably for long periods of time on his current settings on the NAVA mode. However, Malachi often has off days where he needs more support for a period of time and works harder to breathe. The first thing that the healthcare checks is whether or not he is getting sick- something that needs to be addressed quickly if that's the case. Often though, the off day can be for other reasons. One big culprit is that air gets trapped in the sick areas of lung and the gas exchange (oxygen in and carbon dioxide out) cannot happen effectively. Several times in the last few weeks Malachi has needed to be resuscitated again. Once was because too much condensation pooled in his breathing tubes and ended up starting to go down his trach and into his lungs. The natural reflex is to clamp down to protect the airway, which is what Malachi did. Malachi's lungs have low reserve, meaning that it takes a long time for him to catch his breath, or recover from any respiratory issues. He turns blue quickly and needs help quickly when things like this happen, because he goes down quickly. 

Malachi also is having issues with sores and redness around his trach and trach ties (which go around his neck like a collar to hold in the trach tube). We are trying different gauzes and dressings to help his poor little neck. 

On Thursday, we had another meeting with the healthcare team working with Malachi that week, including the neonatologist, the fellow working with her, a respiratory therapist, Malachi's nurse, the occupational therapist, social worker, and a representative from the complex care team (the team which will be following Malachi when we take him home). We know that Malachi will be coming home with his trach and on breathing  support. Once he is able to come off his breathing support, Malachi will still need his trach for a long while. This is something that he can be monitored and go back on breathing support if he gets sick or cannot handle it. We are told the trach will likely be in for a few years. 

Two big things came from our family meeting which were hard to hear. 1) The Neonatal Intensive Care Unit (NICU) has started the process of moving Malachi to the Pediatric Intensive Care Unit (PICU). This is because he is outgrowing the NICU in some ways. More importantly, the PICU needs to know Malachi well for when we come back to the hospital (when he gets sick or has any issues with his trach). It's going to be a hard move for us as parents... the NICU has become like a family in many ways to us over these past 7+ months. We know probably 99% of the staff and have come to form relationships with many of them. Further, the NICU staff have been stability for us during all these months of uncertainty and chaos. We have grown to feel okay about leaving our son every night because we know who is taking care of him. We love how nurses and doctors and respiratory therapists and other staff love Malachi and work hard to get smiles out of him... but deep down we know the move to the PICU will be good for Malachi. 2) The neonatologist expressed that she wouldn't be surprised to see Malachi still in the hospital on his first birthday... November 9th... We sort of suspected this bit of news but it still is so painful to hear it said out loud. November also means cold and flu season starting and if Malachi gets sick it would most likely cause setbacks and delay his stay even longer. It was difficult to hear, yet we also know that our God is all powerful and He is in control! So we pray hard for a miracle but also do our best to accept His Will for our Malachi and for our lives as Malachi's family. 

Malachi's New Piano Toy!

1 Day Old vs. 7 Months Old

Finally, it's a day late but Happy Father's Day to all the fathers out there, and especially all the hospital dads. We know it's so hard! 

To Nathan (it's Jodi here), thank you for everything you do. You get up early and go to work even when you're exhausted physically, mentally, emotionally... to provide for our family. You struggle to focus at work when Malachi is having a bad day and you wish you were with the family. You come home from work and we rush through supper so that one of us can go to Malachi in the hospital while the other feeds bottles, changes diapers, bathes little bodies, washes bottles... You make sure our bills are paid, you figure out what needs to be done to make our home ready for when Malachi comes home, you figure out assistance for children with severe disabilities insurance and employment insurance and the different healthcare companies and nursing companies and paperwork... You work at our house each Saturday to get it ready for Malachi. You don't sleep well because of all the worry and the stress. You love our triplets and you care for them better than any father could! Fatherhood is not what you expected and yet, you've stepped up to the plate and been a strong rock for our family. Happy Father's Day, my love!

Day 208

It's been two weeks since we have updated our blog and it feels like a lot has happened since. Each day feels busy, as if we are always going and going and going. Each day we bounce back and forth between the hospital and the Ronald McDonald House, have someone come to watch Liam and Taylor for a bit almost every day, often have appointments with Liam or Taylor, meetings with the doctors and healthcare team, have training sessions for taking Malachi home eventually on his trach and ventilator... not to mention the many bottles and dirty diapers and piles of laundry and Nathan's job...  triplets are busy! It also feels busy because babies change so quickly. We have been noticing so many new things with each of our babies and it is beautiful, exciting, and also bittersweet to see them growing and changing so quickly.

Our first ever family photo after 201 Days

Nathan finally getting to hold all 3 for the first time

Liam Josiah:
Our adorable oldest has been growing and eating like crazy. Liam is 13lbs and 2oz, Taylor is 12lbs and 4oz, and Malachi is 13lbs and 3oz! This past week he had a head ultrasound done to check the fluid levels around brain and his brain in general, but we haven't yet received the results. This coming Thursday we will know. In the meantime he still has his head measured weekly. Our sweet boy has really started to find his voice and loves to coo and "talk" to people. It's so cute! It also seems he has a bit of a temper starting to show... which isn't as cute! He can get extremely upset in a very short period of time. But overall, our little man is easygoing, happy, and smiley.
Both Taylor and Liam have both started a course of antibiotics this past week after we received a phonecall from Public Health that they may have been exposed to Whooping Cough. This is because there was a child staying at the Ronald McDonald House who was not vaccinated and ended up getting the Whooping Cough while staying at the House. Public Health recommended that we immediately put our babies on a strong antibiotic to prevent them. Our pediatrician agreed and gave us a prescription within the hour. We obviously do not wish to have our babies on strong antibiotics (which also have strong side effects like diarrhea) especially when they are not sick, but realize the vulnerability of our little ones. This also means that Liam and Taylor are not allowed to visit Malachi for a period of time. This is also disappointing in light of the fact that we were finally able to bring them in now that Malachi had been finally cleared of his pneumonia.

Who, me?

All dressed up for Mommy's birthday

Telling us a story

Taylor Joy:
Our smallest sweetheart is still being closely monitored for growth, especially since she is not very enthusiastic about taking a bottle. Her reflux medications seem to be helping with her projectile vomiting but it is still often a bit of a process getting her to take enough of her bottle. Yet, she is still our happy girl who smiles anytime, anywhere, to anyone! She likes to coo in a whisper voice and make bubbles in the back of her throat, but doesn't coo with her voice very often. She also sucks on her fingers, while Liam prefers his thumb.
This past week she learned to roll from her belly to her back and we are so proud! It's funny how babies can give their parents such excitement and pride over the smallest things. You would think she graduated college by the way we felt. And yet, each time they reach a milestone it is a blessing. This is especially in light of the fact that we don't know what the future holds for each of our precious triplets. We know they will have many challenges developmentally, but we don't know to what extent for each one... only time will tell. We also often reflect on how blessed we are that they are even with us today! And so we celebrate everything!

Could this smile get any bigger?

Napping in our stroller after an afternoon of appointments

Malachi John:
Our youngest baby boy... where do we even start the update on him? The situation changes so quickly and so often. On Thursday May 25th we almost lost our sweet boy yet again. This time we don't really know why, although there are a few theories. Nathan had just visited Malachi and was walking to the Ronald McDonald House to switch with Jodi when it happened. He suddenly dropped his oxygen saturations and heart rate to the point where the healthcare team started to resuscitate him with a bag (this is like mouth to mouth except it is done through the trach stoma/hole and the breaths are given with a self-inflating and oxygen-rich bag instead of a mouth). This bag has been used many many times on Malachi, but this time he also needed chest compressions to bring his heart rate back up. After a minute and a half he came back up after which the team started to do extensive testing to determine why it happened. He was immediately started on IV antibiotics because of a suspected infection, but after a few days it was stopped when all the tests came back negative. The ENT (ear nose and throat) specialists used a scope to check if there were chunks of mucous or secretions in his lungs that may have caused a blockage or if his airway was collapsing. Both looked great. A chest x-ray was done to check for pneumonia, fluid, or collapse. The x-ray showed some collapse, which was likely from during or after the incident itself. And so all the tests to show why it happened came back negative. The theory at this point is that there was a large mucous plug that was dislodged by the chest compressions and CPR. It scares us so badly to think that this could happen at home. After the incident, Malachi needed higher oxygen (around 90% instead of 35%) and his settings also needed to go higher. (If you are interested, he is on a PEEP of 14 and a NAVA level of 0.6, with his PIP fluctuating between the high 30s and into the 40s. The NAVA ventilation mode does not set a PIP or PC above PEEP because it is dependent on the electrical signals of the diaphragm). Our Malachi just keeps creeping up on his settings, which is obviously not what is supposed to be happening. The doctors tell us that they are still trying to work out a baseline for our little guy to breathe comfortably. This has been a struggle since Day 1.
It has also now been confirmed that Malachi has kidney stones, gall stones, and nephrocalcinosis (calcium deposits in the kidney). These will all need to be monitored closely through bloodwork and ultrasounds. We need to watch to see if he seems to be in pain, starts peeing blood, etc. so that the team will determine if something needs to be done.
On a brighter note, Malachi is starting to smile more and more easily for us which melts our hearts every time. All the stress and anxiety and heartache around our sweet boy melts away for a little bit when he smiles. He is still not allowed to sit up (assisted of course, or in his MamaRoo) because it makes him work too hard to breathe. We are constantly working with the Occupational Therapist to find ways to let him explore and develop, since he does not have the opportunities that healthy babies have. He likes hitting and looking at his hanging monkey toy and some other toys that we hang in front of him. He also loves to listen to music.

Malachi in his MamaRoo chair

He can't make noise but we think he wants to tell us a story too

Some days are easier but others are harder as physical and emotional exhaustion hits us. Some days we think that "we will get through this", but then the fragility of life hits us hard again... whether because Malachi is having a bad day or because of what we see in the NICU or because we are just too tired. We continue to covet your prayers, especially for our Malachi. We know the road is still long before us but we know too that our Heavenly Father continues to care for us and our precious three miracles!

3 Months Old (Corrected)

Yesterday the triplets turned 3 months old corrected. Although they have been with us for over 6 months, they are now 3 months past their due date. This means developmentally they are 3 months old. 

Liam: 

Our sweet easygoing munchkin is now 12lbs and 8oz! He is good at feeding and is always much quicker than Taylor at drinking his bottle. We have really noticed him thriving at home in the past few weeks and catching up to Taylor developmentally. For example, we see this in the way he responds to us (head turning, eye contact, smiles, etc.) and the way he plays (looks more at hanging toys and hits them, etc.). It's beautiful to see him thrive at home after spending so much time in the hospital. At the same time, it is hard not to think of our Malachi and how he could thrive better at home too. 

Liam still has his head circumference closely monitored 2 times a week. His eye exam this past week went very well and his followup is now in 3 months! Much better than weekly or every other week appointments. 

Taylor: 

Our sweet happy girl is continuing to do well too. There are some concerns with her weight gain being too slow and so she tags along to Liam's appointments and is weighed twice a week. She is now 11lbs 14oz. As parents of micro preemies, it's hard not to worry and over analyze every detail with our babies, especially when they are so closely monitored in every aspect for their whole life so far. 

Mother's Day 2017

Malachi:

Our sweet precious youngest has been having a rough last week or so again. He is just on the tail end of his antibiotics for pneumonia and we hope and pray that it is fully gone. Even though he is acting mostly recovered from the pneumonia, the healthcare team has been having difficulties when trying to get him comfortably breathing. To be fair, getting Malachi comfortably breathing has been a problem his whole life. However, ever since he got the trach surgery, the team has been trying to find settings that he is comfortable in as a "base line". They want to get him to a point where he can breathe easier and grow quicker. As it is, he is working hard to breathe: sweating all the time, burning lots of calories, having significant work of breathing in his chest, flaring his nostrils, etc. Because of all the difficulties in trying to find stable settings for Malachi, a number of tests were done last week Friday. This included a chest X-ray and a scope put down his trach tube into his trachea and top of the lungs. In this scope they saw that the trachea below the trach tube was collapsing. This is called tracheomalacia. It was immediately decided that Malachi needed a longer trach to try get past the collapse in the airway. However, the size he needed was custom, since the width of the longer trach was too wide for a little guy like Malachi (for you trach minded people out there: he was on a 5.5 cuffed trach and needed to go longer). We were quite worried over the weekend because all of the specialists and regular doctors went home for the weekend and we were sort of left in limbo over what the plans were moving forward. On Monday, the team reassessed and did another scope- this time leaving the breathing support on (instead of quickly taking it off for the scope) and did not see any tracheomalacia. This could mean one of two things: 1) he doesn't have it and Fridays scope was inaccurate without the breathing support or 2) he has it but the high pressure of air blowing into him keeps his airway open and free from the collapse. Either way, he does not need any type of intervention at this point. However, something still needed to be done to get Malachi on to comfortable settings. After some playing around with higher settings, the team decided to put Malachi on a special mode of ventilation called NIV NAVA. If you have read our previous blogs, Malachi has been on this before without his trach. The hospital does not technically support or fund this technology. It was being trialed a number of months ago and Malachi responded well to the trial. The hospital has allowed him to go back on this mode of ventilation and has ordered the special (expensive!) parts for him. We are so grateful! This ventilation involves an NG feeding tube down his nose which he doesn't need because he has the g-tube feeding him through his stomach. However, on the feeding tube are electrodes reading the electrical activity of Malachi's diaphragm and providing breathing support based off of that information. It's amazing technology! The last day and a bit that he has been on it have gone well. He seems more relaxed and is sleeping a lot. His oxygen support levels have come down significantly. It's still early but we hope and pray that this will help Malachi! The idea is that the NIV NAVA will give the healthcare team the data that they need to understand what Malachi needs to breathe comfortably. At the same time, it will also give Malachi some time to grow and relax... which is crucial to his improvement. 

As parents, we have mixed feelings about it all. On one hand we are thankful and hopeful that this will give Malachi what he needs. On the other hand, this mode of ventilation is not a step towards going home as he cannot go home on this machine. We had a big meeting this past week to discuss Malachi and in that meeting it was noted that a timeline is very hard to say at this point. In our previous blog we had mentioned August as a potential home date but this is once again pushed back. We are trying hard not to be excited for when we might go home but really try to "pretend" we are home and enjoy our babies as much as possible! Yes, we have a lot to figure out and learn and prepare for now so that we are prepared and ready to take Malachi home, but we cannot look forward to that all the time. 

Another new development with Malachi is that an ultrasound has shown he has gallstones. In the coming week, we will figure out what that might mean in terms of potential treatment but we hope and pray that nothing will need to be done. 

Aside from all the changes in ventilation, our little sweetie is starting to play with a hanging toy and give lots of big smiles at certain times of the day. He is now 12lbs and 15oz! 

The other half of Mother's Day 2017

With the NIV NAVA NG tube in his nose 

As we watch our little ones growing and developing, we stand in awe of God's awesome handiwork! He has brought these precious miracles so far... The well known text comes to mind from Psalm 139:13-16: "For you formed my inward parts; you knitted me together in my mother's womb. I praise you, for I am fearfully and wonderfully made. Wonderful are your works; my soul knows it very well. My frame was not hidden from you, when I was being made in secret, intricately woven in the depths of the earth. Your eyes saw my unformed substance; in your book were written, every one of them, the days that were formed for me, when as yet there was none of them..."

6 Months Old!

Wow, it is hard to believe that the triplets are already 6 months old! As parents, we feel as though the past 6 months have gone very slowly and yet very quickly at the same time. It feels like yesterday that they were born but it also feels like a lifetime ago. We cannot describe the immense gratitude we feel that we have our 3 miracles with us today. As triplets born at 25 weeks gestation, they have defied many statistical odds. We have seen the fragility of life, especially in the first few weeks and months. We have watched each of our triplets need to be resuscitated by a team of NICU staff. We have felt mind numbing fear, shed countless tears, and continue to have chronic anxiety. We have stood by while two of our triplets went through significant surgery. We’ve felt emotionally drained and mentally exhausted. We have learned lots of medical information and learned to advocate for our triplets. We feel changed… our perspectives and outlook on life, our relationships, our faith…

We have been stretched so that we thought we were breaking but also given strength from above for each day. The LORD God has carried us when we thought we couldn’t take another day. He has given us a wonderful healthcare system and an amazing NICU staff whom we have grown to cherish. He has given us incredible support through the church family/ communion of saints, friends, and family. We continue to thank and praise Him for the beautiful gifts He has given us, and we trust in Him for each new day.

Liam Josiah:

On Tuesday May 2, our sweet boy came home after 175 days in the Neonatal Intensive Care Unit! It was earlier than everyone expected, and we recognize this too as an incredible gift. There are a number of issues that still need to be addressed but this can be monitored by specialists and pediatricians. One of these issues is Liam’s brain fluid and brain size. For several months, the healthcare team was concerned that the cerebral spinal fluid around Liam’s brain was increasing too rapidly. Thankfully, the team has concluded that this is a not a significant issue. However, the head ultrasounds have demonstrated that there is a considerable amount of space between his brain and his skull. This will be monitored through regular ultrasound appointments.

The drops in heartrates that Liam is still experiencing while he is sleeping (bradychardias) have been deemed insignificant as well. Liam is having less and less of these and they always self-resolve in a very short period of time.

Our little man is healing well from hernia surgery and will also have follow up appointments for this. Finally, his eyes still need to be closely monitored through ophthalmologists to check for ROP (retinopathy of prematurity). All preemies are monitored for this disease. It seems that Taylor and Malachi are mostly “in the clear” but Liam’s eyes are still a cause for concern. We know that all of our triplets are still at a higher risk for needing glasses in the future, and that is also monitored through regular appointments. Eye doctors, hearing specialists, growth and development specialists, pediatricians, surgery follow ups, ENT specialists, the complex care team, occupational therapists, physiotherapy… there are a lot of appointments in our future!

This past week with Liam home at the Ronald McDonald House has been amazing but naturally much busier. He is an easygoing and happy baby. However, when he gets hungry (which is every 3 hours almost on the dot thanks to the strict NICU scheduling), he is very vocal and cries loudly. He is so loud that he often makes Taylor cry! It makes us laugh how loudly he can cry, especially compared to Taylor’s soft cry. We are thrilled to have our firstborn home and it still feels surreal. And now… we wait for our Malachi!

Just passed the car seat test!

In front of the doors we have walked through countless times

Washing bottles with Mommy 

Little hunk

Taylor Joy:

Our little lady is happy to have her big brother home! She mostly doesn’t notice him except for when she startles from his loud cries… but we are working on letting them get used to each other with lots of snuggles! Seeing them side by side at home makes our hearts so happy, and we can’t wait for our third triplet to join them.

Proud Daddy

Malachi John:

In our last update, Malachi was just getting over his pneumonia and finishing up his oral antibiotics. A few days later, Malachi was acting unwell and unhappy, needing more oxygen, and needing to go up on his breathing support settings. On Wednesday May 3, bloodwork was done yet again and showed that Malachi had yet another infection. After a few days in isolation as we waited for test results, it was determined that Malachi had pneumonia once again. Our hearts sank… it seems like our little man just can’t catch a break ever since the tracheostomy surgery! A skilled nurse was able to find a vein for an IV to go in Malachi’s head and he was able to have 5 days of IV antibiotics before needing to be switched to oral antibiotics. In the meantime, his breathing support settings just keep going up. There were 3 separate instances this past week where Malachi needed to be resuscitated with a resuscitator bag. He is so dependent on his breathing support that if anything goes wrong with his trach tube, he decompensates very quickly. His oxygen saturations drop very quickly, his heart rate drops, and his colour turns grey and then blue very quickly. It is very scary and tense and doesn't get easier witnessing it each time. We hope and pray that he has less and less of these episodes as he becomes more stable on the trach.

Our little man also needs a lot of suctioning through his trach tube because of all the secretions and mucous that comes up from the pneumonia. Even when Malachi isn’t sick, he still needs to be suctioned every few hours or so. This is because he is unable to cough or clear his throat properly with the trach, as most people do. We have been starting to practice trach care as we start learning things. Suctioning is one of the things we can practice. The area around Malachi’s trach also needs to be cleaned in a very specific way twice a day, which we have been starting to do with the respiratory therapists. The trach tube also needs to be changed every week (every two weeks in the future) which is a very intense and scary thing to do with Malachi being dependant on the trach tube and breathing machine to breathe. These are just a few of the things we have been learning in our classes.

The fact that Malachi keeps getting pneumonia is also frustrating in light of the fact that Malachi needs to come down on to more stable settings before he can go home. As it stands, our training will run for roughly 4 months: 2 months for trach training and then 2 months for ventilation training (the breathing support machine). This will likely bring us to August. After the training is completed and we are comfortable caring for Malachi, Malachi needs to be stable enough to come home. Our little man continues to need prayers!

Sick little man