20 Weeks (and 1 Day)

The triplets are now over 20 weeks old, or 142 days. We have been very busy adjusting to having Taylor with us, while the boys remain in the NICU. It has been like taking a newborn home, even though she is technically much older! We have been learning how to take care of a baby 24/7 and dealing with a whole lot less sleep... It still feels surreal that we finally have our baby girl home with us. We can't wait for her brothers to join us one day!

Liam:

Our oldest baby boy has been slow in improvements these last few weeks. His blood sugars have still been periodically too low, yet all the tests have still been negative. The healthcare team decided to also check for an infection again, even though Liam was acting normally "clinically". This test came back positive for a urinary tract infection. Our Liam has had a number of these over the course of his young life! Next week, once the infection has been cleared through the IV antibiotics, Liam will receive a test to make sure his kidneys, bladder, and "plumbing" is all working properly. The main thought is that maybe urine is flowing backwards at times and causing the infections. Another test that Liam will undergo next week, is that if he has another low blood sugar he will receive glucagon. He will be monitored to see if this helps his blood sugar or not, which will help to narrow down the issue for the doctors. 

Liam's High Flow settings have stayed the same for a few weeks now at 8, but just Tuesday he was finally weaned down to a 7. The doctors are hesitant to wean Liam too quickly because of how quickly he regressed the last time he was nearly off his breathing support. The neonatologists working on Liam's team this week told us that he expects another 3-4 weeks before Liam can come off all breathing support. It's hard not to be disappointed considering how close he was just a short while ago..! However, we know that God has a plan for our little man and He continues to hold our Liam in the palm of His hand!

Yesterday, Liam smiled at his mom for the first time! Our little man gives lots of gassy smiles but this one was deliberate with eye contact. We are loving to see all the new developmental things that our sweetheart can do! He is getting really good at focusing on people's faces while they are speaking, turning his head to sound, and getting stronger in his neck.

Listening to Mommy

Planning mischief already

"Who is this in my bed, Mom?"

Taylor:

Our little lady is thriving at home! We love being able to interact with her and love getting smiles out of her! This whole NICU experience has given us a deep appreciation for all the little things we have never gotten to experience before now... the bathtimes, the cuddles whenever we want, picking out her clothes, stroller walks, relaxing in our room with her... it's been amazing! However, we find ourselves medicalizing everything all the time. We are always asking each other: "Do you think this is normal?" We are constantly wondering if her colour is okay, if she is working too hard to breathe, if her temperature is okay, if she has had enough mL of breast milk, etc... It's hard to relax with her after the roller coaster her life has been. 

So far, Taylor has been home 11 days and we have had 3 different follow up appointments, with at least 5 more coming up in the next month or two. It's difficult to take her out to the various appointments also because of potential exposure to germs. Taylor is the most resilient of the triplets but still more vulnerable than other babies. Some doctors have told us as soon as we entered to wait in special waiting rooms away from everyone else in the waiting room. We have not been taking Taylor to the hospital to visit her brothers too often. This is because we need to be very careful about germs going back and forth between the triplets. However, she has enjoyed a few cuddles so far and seemed to enjoy them along with her brothers! 

A nurse recently asked us if having Taylor home was easier or harder for us. Our answer is that it is easier on our hearts (but harder in other ways). It never gets any easier saying goodbye every day to our boys in their hospital beds. Many tears have been shed on the walk out of the NICU and into the elevators! 

Classic Taylor face when she is listening intently

Malachi:

Our sweet Malachi has been scheduled for a tracheostomy. His surgery will be the Lord willing tomorrow (Friday) morning. It has been so hard to come to this point and our hearts are aching for our little man. In the last week, he was unable to stay on his High Flow breathing support and had to go back on CPAP. The team had a hard time stabilizing his carbon dioxide levels in his blood and he was working quite hard to breathe. We know that he would most likely be on CPAP for many months and that this is not ideal for his development. He needs to have developmental opportunities like other babies so that he can build on these developmental milestones. At this point, we aren't sure if Malachi will be able to orally feed with a trach, and so the doctors are putting in a G tube during the trach surgery. This is basically a tube put directly through the stomach to feed him. This way he doesn't need the tube through his nose and down his throat. (Malachi and Liam pull these NG tubes out all the time, which is very unpleasant for them). 

We are still learning what this tracheostomy will mean for Malachi and us as parents. The surgery will take a few hours if all goes well and he will paralyzed for 12-24 hours. For a number of days afterwards he will be sedated so that the trach site can heal properly. We are so scared to see our little guy go through all of this. We also know it will be a few months of learning how to take care of the trach (cleaning, changing, dealing with emergencies, etc.) before we can even think of going home with our youngest. 

Our little all-star

Precious sibling moment

During these last 4 and a half months, we've often asked "Why God?" Why do these little babies have to go through so much suffering? Why does Liam have to get yet another infection? Yet another low blood sugar? And why does Malachi now need such a major intervention? Why can't we take our sweet babes home yet? Why such a long road..? 

We don't know God's plan for our family, and for each of these precious triplets, but we do know that He does have a perfect one. We trust that He is carrying us through this and that He loves us. He loves each triplet even more than we do. A dear sister in Christ texted us a Bible text from Lamentations: "But this I call to mind, and therefore I have hope: The steadfast love of the LORD never ceases; his mercies never come to an end; they are new every morning; great is your faithfulness..." (Lamentations 3:21-23). Please continue to pray for our little miracles, and specifically for Malachi's surgery!

Taylor's Discharge!

Usually we write each blog in order of each triplets age but this time we are starting with our middle child! 

Taylor Joy:

After 131 days in the Neonatal Intensive Care Unit, our baby girl finally came home! She was exactly 44 weeks gestation, or 4 weeks corrected.

At the beginning of the week, Taylor was nearly transferred back to be with her brothers, instead of in separate hospitals. However, weather and a few emergency calls prevented this. Towards the middle of the week, Taylor started taking all her feeds by bottle and by breastfeeding. It took Taylor a grand total of 2 weeks to learn oral feeding, which was beyond what anyone could have expected for a "25 weeker"! She is a strong and feisty little girl and we are so proud of her. Because she was doing so well and her discharge seemed close, we decided to call off the potential transfer and focus on getting her home as soon as we could. Her discharge date was delayed a little bit because Taylor was not gaining weight as quickly as she was supposed to. We suspect this is from all the new "work" she had to do to eat, rather than letting it go directly through her feeding tube into her stomach. We slept in the hospital with her 2 nights before taking her home. We were extremely anxious to have her with us without any monitors to tell us her heart rate, and oxygen saturations... we pretty much stayed awake both nights. 

Now that we have her home, the anxiety is still very much there but we are adjusting. It feels incredible and amazing and emotional to finally be able to "parent" one of our babies! It does not even feel real..! Since Taylor was a micro preemie, we will have (and already have started) many follow up appointments and specialists seeing her. It's important that her development is followed closely. Having her home has added a new level of busyness and sleeplessness to our lives, but we couldn't be more thankful to finally have her home!

  

Liam Josiah:

It has been a bit of a frustrating week and a half for our handsome little man. He was very close to coming off his breathing support again at the beginning of the week. His blood sugars had also been stable for around 2 weeks. Then without warning, Liam started needing oxygen, higher breathing support settings, and had a low blood sugar reading again. The healthcare team was not very surprised at the higher breathing support needs, since it often takes babies quite a while of "back and forth" before finally coming off all breathing support. We can't help but feel disappointed though, because he was so close to coming off before going backward a number of steps. It's also frustrating that his blood sugars have been problematic again. We hope and pray that this will resolve soon!

Our little munchkin is also showing signs that he is very ready to start oral feeding. He still loves his soother and loves to suck really hard when we put a few drops of milk on his soother. Because of his very loud cry, we are pretty sure that this triplet will be one of the first to get fed once all three are finally home! However, he needs to wait until he is off his breathing support before being allowed to start breastfeeding and bottle feeding. This is because the air blowing in his nose would blow the milk into his lungs. He also needs to wait for his blood sugars to stabilize before oral feeding. This is because he needs to have his milk given over long periods of time (currently 2 hours of feeding and then 1 hour off) so that his blood sugar stays high enough.

Malachi John:

Our littlest man had an exciting week. In the last few weeks, the healthcare team has been tossing around the idea of a tracheostomy for our Malachi. The idea is very preliminary and not at all set in stone. The team will need to assess and discuss the idea, and especially take Malachi's development into consideration. We know that babies undergo a lot of developmental milestones and we need to do our best to make sure they can have the opportunities for development while they are in the hospital and on breathing support. It is a very difficult decision to make and it weighs heavily on our hearts. With the trach in the back of their minds, the healthcare team decided to try Malachi on very high setting on High Flow. The idea is that maybe our little sweetheart is frustrated and tired of the CPAP mask, hat, prongs, etc. and that is why he needs so much support... it was worth a shot! We could tell very soon after Malachi was switched to High Flow that he was much more comfortable. The question was whether or not his lungs could handle it... It's been 4 days and so far he is doing well. Sometimes his oxygen needs go up and sometimes he starts working very hard to breathe, but so far both of these issues have been able to settle out on their own. Again, we hope and pray that he can stay on this mode of ventilation, as it is definitely a step in the right direction! 

In the meantime, we are loving that we can look at Malachi's adorable little head and beautiful squishy face! 

4 Months Old (and 4 Days)

The triplets have passed their 4 month birthday on Thursday! They are technically 3 weeks past their due date or "3 weeks corrected". It has been a really hard week for us parents. It has been so hectic and so draining going back and forth between hospitals, trying to stay up to date on each of the triplets and trying to be there for each of them. Since Taylor started breastfeeding this past week, Jodi had to be with her at specific times, since all the babies are on the hospital's feeding schedule. Emotionally it was exhausting to leave each baby, especially when they were crying when we needed to leave. As parents, we often split up so that we could divide our attention between babies, but it was hard to not be able to support each other. We also recruited our Moms to hold the boys during the times when Jodi needed to be with Taylor. Mentally it was exhausting to always be trying to schedule our time, to get used to the new hospital and new staff, and to stay up to date and active with each baby's health plan... Most nights we would drop into bed exhausted and wonder how we would get through the next day. 

On Thursday afternoon, Nathan met with some administrative staff from the hospital to discuss what Taylor's transfer meant for our triplets and the impact it had on our mental, emotional, and physical health. We wanted to advocate for future families of multiples so that this type of scenario could be avoided for them in the future, if possible. The team was very understanding and told us that they would even try to get Taylor back! As of Monday, it looks like they may be successful. We are so so grateful for their efforts and hope and pray that they will be successful in the next few days.

Liam Josiah:

On Tuesday morning, Liam came off of all his breathing support! We were so excited for our baby boy! We knew that he might not last but were still happy that he had made it to this step! And we loved to see his face and his head and get used to what our baby actually looked like! On Wednesday evening, Liam went back on the breathing support called High Flow. He couldn't quite handle breathing all by himself and needed a bit of help. On Wednesday night, Liam needed to start receiving oxygen. In the last few weeks, he had not needed any extra oxygen, but we learned that it was fairly common for babies challenged to come off CPAP to need a bit extra. As of Monday, Liam is still on High Flow and still needing a bit extra oxygen. The team weaned his settings a bit today, but it will still be at least a week before he could potentially come off of breathing support again. We shall see what our little man can do!

Liam's blood sugars have been a lot stabler this past week, for which we are so thankful. All of the tests that he has undergone have either come back negative or are still pending. The fact that he has had such a good week makes it seem very likely that the blood sugar issue is a result of prematurity and will resolve in its own. Again, time will tell. 

Early this week, Liam was moved to a different part of the NICU as a "half-graduation". He is inbetween Level 3 and Level 2 care. Malachi is still in the most intensive care which is Level 3 while Taylor has graduated to Level 2. Our biggest triplet continues to grow well. Lately, we have been inquiring about what we can use for stimulating or soothing our babies, now that they are technically 3 weeks. They now can go in swings or look at mobiles, etc. It's a fun stage for us to be in, because our babies aren't sleeping 24/7 anymore. All 3 triplets currently love to be in mamaRoo swings. We like to put them on the car seat setting which rocks them like a car ride... while we dream of taking them home in our car... 

Taylor:

Our baby girl has been doing really well learning how to orally feed. Currently she needs to eat 74mL every 3 hours. This is based on calculations in proportion to her weight. She is weighed on a scale before and after she eats so that the team knows how much she had. Lately, she has been breastfeeding around 40mL before she gets too tired. The rest of what she needs is still given through her feeding tube directly into her belly. She has also managed to take 2 full (74mL) bottles in the past week, but otherwise she again tires before the bottle is empty. It may not seem like a big deal to the average person, but we are thrilled with the progress she has made in only a week! The healthcare team warned us that she could take a very long time to learn oral feeding, but she has really impressed us all with how well she is doing. All that is left for her to do is to build up strength, stamina, and efficiency so that she can  orally take her milk and come home! This last week she was also taken off all of her supplements and milk fortifier (except for vitamin D), which means she is able to grow at a good rate on breast milk only. Another step.

On Saturday, we had our first "outing" with Taylor. We walked out of the main part of the NICU to a room about 3 meters down the hall without any monitors attached to our baby girl. We thoroughly enjoyed the peace and quiet (no beeping or screens) but also the "normalcy" of the moment. However, it will take some getting used to once we go home, because we are so used to the monitors telling us how Taylor is breathing, her heart rate, and oxygen saturation. It makes us anxious not to know these numbers, and the security of knowing that her vitals are okay. We will certainly need to get used to it over time.

Malachi:

Our little man is slowly but surely improving as well. His respiratory settings have come down a little bit this past week, and his oxygen levels have also been as low as 27%. This is an all time record for our Malachi! He is still not able to be on straight CPAP (a steady pressure into his lungs) but still needs extra support for each breath. As you may recall, he is no longer on the hospital's trial software called NIV NAVA but is now on something called NIV Pressure Support. He is given 40 breaths in a minute which is extra pressure above the steady pressure (aka PEEP). Over time, he can hopefully come off those extra  breaths and then, of course, have his PEEP lowered as well. It seems to us that Malachi becomes more and more comfortable as his pressures are lowered. He still has days where he cries often and is very unsettled, but he has also had some days lately where he sleeps well and is rested. We think this may be because he is more comfortable, and we hope it's not because he is exhausted. Our littlest man has also been growing much better in the last week or two! He has got round and chubby cheeks and an adorable double chin. With his big blue eyes also in the mix, we have been told multiple times that a nurse or respiratory therapist has a soft spot for our little man... 

"No more pictures, Mom!"

Psalm 145:18-19 says, "The LORD is near to all who call on him, to all who call on him in truth. He fulfills the desire of those who fear him; he also hears their cry and saves them..." Yes, He is near us here in the NICU too. Liam, Taylor, and Malachi are in His loving hands. He creates and sustains all life. What a comfort!

42 Weeks Gestation

Another busy week has come and gone for our little munchkins. It has felt like a really long week for us!

Liam Josiah:

Our oldest darling is still having random low blood sugars. We are currently awaiting test results from the metabolic team. This past week, the doctors also called the endocrine back again to reassess Liam, even though they had already done so. The endocrine team ordered a special test for Monday (tomorrow) that will assess Liam's adrenal gland and stress responses. The team thinks it possible that Liam cannot produce a certain stress hormone called cortisol. If this is the case, Liam would have a condition that would need to be treated all his life. By Wednesday we should have the results. Liam is now finished the antibiotics for the UTI (urinary tract infection) and his IV came out of his head on Saturday. We had thought that maybe the blood sugar issues would resolve once the infection was gone, yet this hasn't been the case.

With all these investigations ongoing, we still hope and pray that Liam's blood sugars are off simply because he was a micro preemie. 

While we are disheartened that Liam's low blood sugars are ongoing, we are excited that Liam was able to come down on his CPAP settings again on Sunday (today). This is the third time that the respiratory team is trying him on this setting, since he could not tolerate it the first two times. This time, he seems to be doing well! If Liam can do well on this setting, then the next step will be off of CPAP and onto High Flow (the tube under the nose that Taylor was previously on). We hope that within the next week, Liam could take this next step, but time will tell. 

Our biggest triplet is now 8 whole pounds! He has been getting quite a lot of breast milk lately (still with extra calories and sugar) in order to try keep his blood sugars stable. Liam also has a really loud cry. Often when we are walking into the NICU we can hear him from far away down the hallway. He loves his soother and loves to be taken out for cuddles. Lately he has also been having more periods where he is awake, during which he likes to be held in a sitting position while listening intently to us talking to him. 

Taylor Joy:

We were overjoyed when Taylor came off her High Flow on Tuesday and has since remained off of any breathing support! Our baby girl can breathe all by herself! We are so proud. In the days following she was allowed to start non-nutritive breastfeeding. Essentially, this is practice breastfeeding without getting any milk. It is very important that we take this all very slowly because there is a very high risk that Taylor could get milk in her lungs. She needs to learn how to suck, swallow, and breathe at the same time. Another issue is that she will need to build up endurance and not use up all her energy to feed, since she has never had to orally feed before. Her feed has always been given through a tube that goes through her nose and into her stomach. The healthcare team has warned us many times that it could take weeks for our little micro preemies to learn how to orally feed. It will take many small steps and lots of patience to get there. 

On Saturday late afternoon, the weekend doctor approached us and told us that there was a chance Taylor would be transferred to another hospital, as the hospital is currently very full. Sure enough, late Saturday evening Taylor was transferred to a new hospital. We were naturally very upset about the situation... how would we be able to divide our time between the boys and Taylor? How could we stretch ourselves even thinner, when we already feel that some days we are at breaking point? And how would Jodi be able to learn breastfeeding with Taylor while still being there for the boys? So many new stressors, yet we know that we will need to make this work. We hope and pray that our baby girl will learn how to orally feed soon so that we can take her home! 

Today, Taylor had her first attempt at breastfeeding for 10 minutes and did very well. It was an emotional and beautiful moment that we waited nearly four months for. We stand in awe of God’s design for human life! Taylor is also continuing to grow well. Another good development is that she is starting to wake up every three hours and show that she is hungry. This is very good, because she is showing interest in feeding. She also likes to watch us while we hold her and talk to her, and sometimes gives us a smile! 

Malachi John:

Our littlest sweetheart has had some changes to his breathing support settings this past week. He had to go up on some settings early this week when his C02 levels in his blood came up too high. However, otherwise he was doing really well on his settings. On Sunday, however, the respiratory team tried Malachi on CPAP (which has a steady amount of pressure coming into his lungs to keep them inflated, rather than having extra pressure with each breath he takes). Malachi did not do well because he started to work harder to breathe, had higher C02 levels in his blood, and needed more oxygen. Thus, he was tried on another two different types of breathing support before staying on a setting that gives him a baseline air pressure blowing into his nose as well as a set amount of breaths (extra pressure). We are still waiting to see how he will do in the next few hours. If he does not tolerate this type of breathing support, then he will be switched back to the special hospital trial support that he came off of this morning. The hospital will also need to purchase more parts to let him continue on it. In the meantime, we continue to try make Malachi as comfortable as possible on his high pressures and periodic nasal prongs. This means lots of snuggles and skin to skin care!  

(Not recommended to ever wrap your baby like this at home... he is attached to a lot of monitors to make sure that he is breathing well. This is often how the nurses need to keep his soother in so that the breathing support pressure stays in his airways and lungs without leaking out of his mouth.)

We continue to covet your prayers and support, especially as we transition to having the triplets in two different hospitals. It's not just that we need to make sure that our babies are getting their cuddles. It is making sure that we are involved in their care and know their needs. It's making sure that we are involved in the decision making for their health so that we can advocate for them if need be. It is being their voice when we need to be, because we know their history and their needs and their likes and dislikes the best. It's making sure we understand our babies intricately so that we can notice if anything is wrong with them, whether that be infection, sickness, or breathing support needs. It's also making sure that we understand the technology and health plans for each of our triplets. It means meeting with doctors, nurse practitioners, lactation consultants, occupational therapists, nurses, social workers, and respiratory therapists to make sure we are all on the same page and up to date with their health plans. And it means trying to soak up the precious moments we get with each of our sweet babies...

It's been an exhausting road so far, but we wouldn't trade our sweet little triplets for the world!