Day 173

It's been a long week for us as parents. It seems like a lot has happened since our last blog...

 

The cutest sight we ever did see

 

It's not easy getting three babies to smile for a camera!

Liam Josiah:

Our little man has made some big changes! Over the last week, he has been able to get to the point of oral feeding all his milk! This means his NG tube (nasal gastric) came out hopefully for good! We are so excited and so thankful for how quickly he learned to orally feed! The occupational therapist was floored by Liam's progress. She says she cannot recall ever seeing a 25 weeker with chronic lung disease like Liam ever learn so quickly. It's especially impressive because he is a triplet- which means he should be behind developmentally. We are so thankful to our Heavenly Father for giving us this miracle.

Of course the next question on our minds was.. when can we take this little sweetheart home?! There are a number of things that must happen before he can come home. First, he needs to have a number of consecutive days where he is cueing for feeds (instead of being woken up every three hours, he must wake up when he is hungry approximately every 3-4 hours), drinking enough milk on his own (deciding how much he wants instead of forcing him to have the exactly calculated amount every three hours), and gaining enough weight. So far it looks like Liam is doing very well with this step. 

Second, Liam needed to have an inguinal hernia repaired. This happened on Saturday (yesterday) morning. Everything went very well during the surgery and we are again very thankful for this. With the surgery team's recommendation, we agreed that Liam would be given a baby epidural to freeze him from the waist down. This meant he didn't need to be put totally under anaesthesia and therefore did not need to have a breathing tube put in for the surgery. We were thankful that the breathing tube could be avoided, since Liam has had a long history with breathing support and we wanted to avoid any potential setbacks or complications with breathing. While the surgery was not as intense as the tracheostomy surgery or PDA ligation (heart surgery Liam had a few months ago), it still was a surgery and gave us a lot of anxiety and worry. Liam seemed to bounce back very quickly, though, and is already off his IV and taking full bottles again. Both Liam and Taylor still have large umbilical hernias that will not be operated on because they usually are able to resolve on their own.

A third issue that needs to be resolved before Liam can go home is that the fluid in his brain needs to be assessed one more time. In our last blog, we briefly mentioned that it appeared Liam was having fluid buildup in his brain. After yet another ultrasound this past week, we are still unsure if this is a legitimate cause for concern or if perhaps the ultrasounds are being assessed and measured differently by different technicians. We hope to have some better answers this week.

Finally, our little man still has some drops in his heart rate while he is sleeping (bradycardias). The healthcare team will decide this week whether or not these are serious enough that Liam needs to stay in hospital for monitoring, or if these are not a cause for concern. 

We are starting to get more and more excited at the thought that our Liam might actually be coming home soon..! We hope he will make it home before his 6 month birthday but we know enough that this is the NICU and lots can happen yet... 

 

Our 11 pound easygoing sweetheart

 Just about to go in for surgery

Snuggles with one of his two amazing Grandmas!

Taylor Joy:

Not much to say about our sweet baby girl except that she seems to get more and more smiley!

 

 

Snuggles with  Malachi now that he is all better

Malachi John:

Our little sweetie is finally off his antibiotics for pneumonia and his urinary tract infection. He seems to be feeling much better and has started to smile more again at his parents, nurses, and respiratory therapists. We can tell though that he is often unhappy, whether from the trach or from being too warm (happens often with him) or for other reasons. We are working on being better able to take him out of bed so that we can comfort him better and snuggle him more easily. It is very difficult though, as we need to ensure that the trach and the fairly heavy tubings are all secure. The trach tube is tied around Malachi's neck, but it cannot be tied so tightly that it could never be pulled out. If it was tied this tightly, Malachi's neck circulation would be cut off. Thus, there is always the risk that the trach tube will be pulled out by accident. It is very serious if this were to happen and so we need to learn how to carefully move and pick up Malachi while keeping the trach in the right place. It is usually a two person job. 

Malachi managed to pull out his trach tube on Thursday evening. The ventilator (breathing machine) started alarming and so did the monitors so immediately a team came running to get the trach tube back in. This is not something that is very easy, since you cannot just "shove it back in". It requires the right equipment. Within moments, Malachi's heartrate started dropping and his oxygen saturations started dropping very low as well. That's when Nathan walked in for a visit... Thankfully, the team was able to work quickly to resuscitate Malachi and he is okay. However, the incident rattled us yet again. We know that Malachi's trach tube will be pulled out again as much as we try to prevent it... he is a baby and doesn't understand that he cannot pull or push on his trach and tubes. But it is extremely scary when it does come out because Malachi is so dependant on the breathing support and there is not a lot of time to put it back in. When we witness events like this, we feel the huge burden of responsibility on our shoulders for when we go home to essentially keep our baby alive. 

Further weighing down our hearts this week was when we took a CPR course on Tuesday. Discussing and practicing the emergency scenarios made us think of what we might need to do with our own sweet boy in emergency situations. How can we ever take home such a fragile little boy? How can we take care of a our sweet boy when the potential for serious emergencies is so very real? How can we perfectly respond to emergencies (without just panicking) to keep our precious baby alive? Our heads and hearts are reeling with it all... Yet, we assured by the healthcare team that we will continue to learn and become more and more comfortable over time with the trach and with responding to potential emergencies. 

Speaking of Malachi's health care team, we are meeting more and more members of Malachi's team, as we start to move towards training to take him home. We feel so blessed to be surrounded by so many professionals who will work with us to take Malachi home and to support us while we are home too... doctors, respiratory therapists, RNs, dieticians, occupational therapists... the list is growing and growing! 

 

I love my Daddy... and my soother!

 

One of our little heroes

We certainly are blessed to be so supported by the NICU team, and also by our church community, friends, family... We are humbled by the love and support for our family. And even while our faith is being stretched and refined, we continue to trust in our Heavenly Father. He holds us and our precious sweet miracles in his Hands and his ways are perfect. As Isaiah 55:9 says, "For as the heavens are higher than the earth, so are my ways higher than your ways and my thoughts higher than your thoughts..." 

Day 164

It's been a while since our last update! We have been busy, of course, between our three little sweethearts. Lots has changed, so it's high time we write a blog post...

Peas in a pod

Liam:

Our tall baby boy has changed bed spots twice in the last two weeks. The first time was to a private room! It was so nice for when we brought the stroller and we were even given a cot for Taylor to nap in! She prefers napping in Liam's luxury swing though. The room was also great because it was closer to Malachi! Malachi has also been moved to a private room for similar reasons as Liam. Malachi's room even has a window! We especially love Malachi's room because we can reduce noise or light to give him better naps. Malachi is a light sleeper compared to his siblings. 

Liam's second room change was to Level 2 care! This is way further from Malachi but it means that he is doing very well. The biggest success is that he has come off of his breathing support. Our baby boy can breathe by himself! We are so proud of him and so thankful to God for bringing our little man this far. Perhaps in correlation to this big development, Liam has started giving out way more smiles that melt everyone's hearts. He is such a sweetheart. 

After a few days off of High Flow, Liam was allowed to start trying to orally feed. We were so excited! The occupational therapist warned us, however, to tone down the excitement. She warned us that Liam would have a hard time because he was born at 25 weeks and spent 5 and a half months in the world without orally feeding. He would have a hard time coordinating sucking, swallowing, and breathing. He would likely choke often or forget to breathe or not pace himself. On April 19th on his Daddy's birthday, Liam blew us all away and took his first bottle like a champion! He didn't choke, paced himself, and breathed well! His only issues were that he was a bit inefficient or "awkward" at sucking and that he tired quickly. The rest of his feeds are given through his feeding tube through his nose (NG tube). He will need to build up endurance and strength to be able to take a full bottle one day, since this is the first "work" he has ever had to do. The occupational therapist explained that it is like running a marathon without any training beforehand. We are brought to tears of thankfulness and relief that Liam can orally feed so well already. Home seems so much closer for our little man... 

There are a few other issues that will need to be sorted still with Liam as well. First, it's possible he will need to go back on breathing support. Babies on breathing support as long as he was could easily get tired and go backwards. So far, he does have periods where he seems to tire and breathes quickly. Second, Liam experiences drops in heart rate when he is in a deep sleep that are lower than they should be. He has had a few tests already that show no results. The doctors want to rule out all potential issues before he could go home. Third, Liam's blood sugars seem to have resolved without having found a root cause. He still is pricked every 12 hours to check his sugars but it seems to be solved! Fourth, Liam's head circumference measurements have been abnormally big the past few weeks and in the 97th percentile. He has a head ultrasound coming up but the doctors are not very worried at this point... so we won't get into too many details of what the issue might be.

We hope and pray that we are in the home stretch with our oldest triplet! The healthcare team estimated it would take around a month for our 25 weeker who is now almost 9 weeks corrected to learn to take all his feeds by mouth. We don't dare to hope for sooner but so far he is doing better than expected...

Liam's first bottle!

Happy boy

Goodnight kisses

Taylor:

Our little princess continues to do very well and grow at home. Although she is the smallest triplet, she is still just over 10 pounds while her brothers are nearing the 11 pound mark. The nurses love it when Taylor visits her brothers, since they all remember her well. We often have family or other friends or church family babysit her while we go to the hospital, and she loves all the snuggles she gets from them! She is a social baby who loves to be cuddled and give smiles.

Posing with her Easter gifts from the Ronald McDonald House

Pretty girl

Malachi:

Our youngest munchkin has had a rough few weeks. Last week Wednesday, the triplets had immunization needles. That night, Malachi spiked a fever and started acting a bit unwell. We all thought it was simply from the immunizations, as this can sometimes happen. However, as Jodi held him on Thursday we started suspecting something else was up. Tests came back positive for pneumonia. Our hearts sank... only two weeks post surgery and he already is sick... can he even handle it? We were told that the pneumonia was somewhat "unpreventable" in that the trach hole is an easy way for infection to happen, even through common bacteria that lives normally on skin. Hopefully Malachi's immunity can continue to improve so that he doesn't catch things as easily, but the fact remains that he is extra vulnerable with the trach. A few days after the pneumonia was discovered, it was also discovered that Malachi has a urinary tract infection (UTI) as well. Our poor little man. By this afternoon, Malachi had "run out of veins" to put IVs in. His IVs don't last very long because he is an active baby who kicks and waves his hands around, and the antibiotics are hard on his little veins. Even the ones in his head have not been lasting very long... He has been switched to oral antibiotics (less effective than IV antibiotics) to allow the veins to heal. In the meantime, his breathing support settings and oxygen needs have gone up while he has been sick. We hope and pray that his breathing support needs will improve as his infections are overcome.

Malachi's trach hole (stoma) has been healing well. We have been having a few issues with air leaking around the trach tube (in his trachea). At one point, the respiratory therapists put a new trach tube in with an inflatable cuff (can be either water or air) that can inflate once inside the windpipe (trachea) so as to minimize the leak but it has since been replaced with a cuffless one. Malachi still doesn't seem to like his trach and acts like it is uncomfortable at times. He gives smiles rarely and cries a fair amount when his trach is cleaned and moved. It's heartbreaking to see him crying but not hear any noise coming from him... or to watch him sneeze or cough and hear nothing... 

But, he still loves his soother and loves to look around at everything and everyone. He is very curious. It's still a big deal to take Malachi out of his crib for a hold and takes a nurse and respiratory therapist to do it. As his trach heals more and the hole becomes more established, it should be easier and easier to take him out and even play with him. 

As parents we have been very busy starting our training and education for Malachi's tracheostomy care and G-tube care. We have extensive training to do before we can take our little man home safely. We have sit down classroom training each week and also informal hands on training as well. It is estimated that it will take around 3 months of training before we can take our little man home but it could be more or less. It's stressful to think about how dependant our little man is on his breathing support. It's a huge responsibility to take him home with the trach and breathing support machines. We are being trained extensively in emergency situations and also need our infant CPR certification. We are so incredibly thankful that both of our moms have started training with us and we would welcome anyone else who would be willing or interested to train with us. Malachi will need to be watched 24/7, so we know that we will need support. 

Finally allowed back in his swing which he loves

Out for a snuggle

It's an intense new chapter of education for us! It's not just about learning new information, but it's also about learning how to keep our son alive and well. We have been feeling the weight of this and it makes us emotional. We see how fragile life is every day in the NICU. We also worry about what it will be like taking care of Malachi with his high needs on top of our other triplets.

We have been feeling emotional also about the potential for Liam to come home! We can't wait until we can all be together under one roof. 

Our pastor texted us a Bible text from Isaiah 40:11 "He will tend his flock like a shepherd; he will gather the lambs in his arms; he will carry them in his bosom..." We continue to trust in our Father's Almighty care!

5 Months Old (and 1 Day)

The triplets turned 5 months old on Sunday! They are 7 weeks corrected. Liam is well over 10 pounds, and Malachi and Taylor are 9 pounds. Taylor is the smallest triplet again, just like when she was born. Liam has always been the biggest. He is going to be tall like his Daddy!

Photos from a generous and talented photographer named Lisa MacIntosh 

who takes pictures for families at the Ronald McDonald House

Arms full but heart fuller

Liam:

Our little big Liam has been making some improvements! His blood sugars have remained stable for the past while, which has allowed his feeds to be given over shorter periods of time. This is good because it prepares him for orally feeding. The plan is still to have a VCUG test this week to check for kidney reflux. 

Liam's High Flow settings have come down again to 5 litres. This means that the next step is to try him off of breathing support. We are getting so excited to think about the next step of learning to orally feed! At the same time we are hesitant to get excited because we know it could still take weeks before he is ready to come home... 

We are, of course, enjoying him in the meantime. He absolutely loves to be cuddled. If he is fussing or crying with his loud voice, all he usually wants is a) food or b) cuddles. He likes to look around and study faces. It's hard to get smiles out of him so far, but he has given a couple! 

Sweet dreams

Making Mommy work hard for smiles

Taylor: 

Our sweet Taylor is happy and healthy at home.  She had her last RSV vaccination of the season a few days ago and is booked for her second round of immunizations this week (same day as her brothers). She also graduated from weekly eye exams and gets two months off before her next one. This means her eyes are developing well despite her prematurity. Lots to be thankful for.

Milk dreams

Malachi: 

Our youngest triplet is recovering well from the tracheostomy surgery. Because of the emergency trach change on the day of the surgery, the plan was to wait for 2 weeks before changing his trach (usually it is 1 week post surgery).However, the healthcare team noticed a leak around Malachi's trach as the swelling went down. They decided they needed to change his trach to a bigger size even though it was only a week post surgery. After this trach change, they told us that the surgery site looked good! They are happy with how he is healing. Malachi's g-tube also looks great and is healing well. We are so thankful but still very nervous about the trach especially. This week we hope to start training on the trach so that we can work towards going home with our little man! 

Malachi has been waking up and becoming more active as his sedation medication and painkillers are weaned. Hopefully by tomorrow evening, he will be off all his sedation and IV painkillers. He will stay on Tylenol for a while but his IV can come out if he tolerates it well! Jodi was able to hold Malachi for the first time post surgery on Friday (7 days after surgery). Malachi seems a lot more relaxed with the trach than with CPAP, although he is still a bit sedated. He has given his Mom some big smiles and likes to study faces. We imagine it's quite different from having the CPAP on his face and the constantly blowing air and humidity...

A few days post surgery

Beautiful smiles from our little man

This last week has been really hard. Part of that was from the post surgery anxiety and stress. The other part was because Nathan had a nasty cold which meant he needed to stay apart from Jodi and Taylor. Nathan has not seen our boys in over a week. We are back together as a (half) family finally and are so thankful for this! We need each other for support... practical physical help but emotional support particularly. 

We are also so thankful for the nurses in the NICU. By now we know most of the nurses that have our babies, although sometimes we don't know a casual or part time nurse. We love knowing who is taking care of our babies- it gives us more peace of mind when we walk out those doors. We love that we can build relationships and learn from the nurses and healthcare team. Their compassion and kindness towards our babies and toward us as parents has been important for our survival these past 5 months. We are so incredibly thankful for the NICU staff! 

We also appreciate all the support that we continue to feel from all of you. Your prayers and messages and cards and texts... thank you all! Our gracious God has blessed us so richly through all the supports we are given! 

Malachi's Surgery

We just wanted to give a quick update on Malachi's tracheostomy surgery that happened last Friday morning. We apologize to those who were waiting for this update!

The surgery to put both the tracheostomy and the g-tube in went well. Malachi went down to the OR around 7:30am and was back in the NICU by 10:30am. He started to wake up and look around as we walked upstairs with him alongside the healthcare team.

As the team was getting Malachi set up in his new bed spot, Malachi suddenly started turning blue. He stopped breathing and his heart rate started dropping rapidly. His oxygen saturation probe was not yet set up, but when it finally was set up it was close to 0 (it should be high 90s). The team called a code pink (cardiac arrest) and people came running from all directions to help resuscitate our son. We watched in shock and horror while our worst nightmare came true. The new trach was pulled out of his throat and an airbag was used to give him breaths through the hole. After about 2 minutes, Malachi started to turn pink again and return to normal. The operating team came rushing to the NICU from the OR and worked on putting a new trach in Malachi. They used one that fit a bit differently. 

When all was said and done, it was determined that Malachi was not sedated enough after the surgery and was moving around too much. This made the trach slip out a bit and was pushed back in to the wrong spot. The operating surgeons put a new trach in that they felt was a better size and made it more secure. Malachi has been sedated more heavily since so that the trach hole can heal. He has been stable since the new trach was put in and the healthcare team is happy with how he is now doing. 

We are so deeply thankful that it was not God's timing to take our Malachi from us yet, however, we often wrestle with the “why” questions. We are still very shaken and coming to terms with everything that happened and we can't wait to hold our little man again once he has healed a bit more.