111 Days

It's been another busy week in the NICU. It's been busy for our triplets, but also busy in general. There have been lots of babies coming in and out and extra flurries of activity everywhere. Although this certainly adds a lot more stress to the healthcare teams working in the NICU, it also seems to affect us as parents. We aren't able to relax as easily when we hear alarms ringing, codes being called over the intercom, people rushing about, and babies doing poorly... However, our triplets continue to grow and make small steps towards improvement. This week, we also allowed our parents to snuggle the triplets for the first time. As the triplets get older, we need to make sure they are getting enough attention and cuddles and so we have enlisted their help. However, we are still being very careful with germ control, and therefore we are still not allowing any other visitors besides close family. 

Liam Josiah:

Our biggest and oldest baby continues to have blood sugar issues. Even though he is receiving extra sugars in his food, he still is having periodically low sugars. The endocrine team had been running tests on him, but the team signed off this past week when all of their tests came back negative. The metabolic team was then called to assess our little man and their tests are now ongoing. The team discussed with us a number of possibilities, including a number of diseases or conditions that they are investigating. Everyone continues to hope and pray that these issues will self resolve so that we can chalk it up as another issue that comes with Liam's premature birth. However, the fact that Liam is having these issues come up after a few months of normal blood sugars is puzzling. Another possible scenario is that the sugar issues are connected to the jaundice issues (Liam still has high jaundice levels but they are slowly coming down with medication). The connection could be disease related. It also could be related to all the infections Liam has had in the past, which could be overworking his liver. Another possibility is that it could be related to all the IV food Liam has had in the past related to his infections. To summarize... still lots of question marks around our little sweetheart.

The doctor on Liam's team last week decided to check for another infection just to be safe. (If you recall a number of weeks ago, Taylor had low blood sugars due to a blood infection and urinary tract infection.) The tests for Liam showed a urinary tract infection. He is now on IV antibiotics to treat the infection. There is a possibility that the infection is causing the low blood sugars, yet it's rather unlikely that a urinary tract infection has been going undetected for 3 weeks.

Another change for Liam and Malachi this week is that they are being put on some laxatives for babies. This is because they both strain and push a lot, even though they are not at all constipated. This affects their sleep and comfort, but also especially Liam's umbilical and inguinal hernias. It's not at all surprising that the boys have these issues because their little digestive systems were not "supposed" to be digesting milk at 25 weeks gestation. We hope and pray that they will have some relief and be able to better relax.

In terms of respiratory support, Liam is improving! He has been weaned to a lower setting on his CPAP and the plan is to try wean him to the lowest CPAP setting on Tuesday. He also has been quite consistently staying in room air, without needing extra oxygen. However, he still has some drops in his heart rate (bradychardias) and drops in his oxygen saturation levels (desaturations).

Finally, Liam continues to grow and is now over 7 pounds! While he is still the tallest baby by far, Taylor is starting to catch up to Liam's weight, as she is also just over 7 pounds. Malachi has passed the 6 pound mark. Liam also loves to be cuddled lately. He will cry and fuss for the nurses but once we come in and scoop him up he settles quickly and sleeps deeply.

Grandpa F holding Liam for the first time

First time cuddles with Grandpa V

Taylor Joy:

Our little lady has been having a good week away from her brothers. She is currently on the lowest setting of High Flow, with the next step to try her off of all breathing support! This will likely happen Tuesday or Wednesday. We hope and pray that she will last without any more breathing support, but it is still very likely that she will need to go back on some breathing support, even after a few days. Taylor is also hoping for this... she has been pulling out her feeding tubes and even taking off her breathing tubes! Sometimes the nurses don't notice for a period of time because her alarms usually don't go off. This is because she is able to effectively breathe on her own for the most part!

We are so excited for the next steps with our baby girl. We can't wait to be able to pick her up without any breathing tubes. We can't wait to start oral feeding. We can't wait to bathe her in a tub once all her breathing tubes are off (instead of with sponge baths). We can't wait to see her face without any tubes on it. And we can't wait to start thinking about taking her home..! Yet, we need to stay calm and ready for any setbacks that might come up.

Taylor loves her Daddy

"It's a nice day to visit Grandma" 

Grandma F holding Taylor for the first time

Malachi John:

Our sweet youngest boy has been having another week of ups and downs. Most of the downs are because he is uncomfortable with the breathing support he is on. As you might recall, he is still on the hospital trial support called NIV-NAVA (not the same as normal CPAP). He is also still struggling with collapsing nostrils and needing nasal prongs, which he hates so much. We have been continuing to give extra snuggles and skin to skin care to our little man so that he can have longer periods of deep sleep. On Monday, Malachi's CO2 levels in his blood were too high and so his pressures needed to be upped. However, the doctors and respiratory therapists are actually quite impressed with how Malachi has come down on a lot of pressures in the last few weeks. We are so thankful that we can see some improvement! At the same time, the doctors continue to warn us that we are still looking at months in the NICU with Malachi. If we go home with him any sooner, it will be because he is coming home with breathing support.

Finally, all 3 babies continue to get eye exams. Thankfully, none of the triplets need treatment for bad eyes, but they are still developing and continue to need monitoring. We are also thankful that follow up head ultrasounds on all three babies show that any cysts and brain bleeds that have shown up in past ultrasounds are mostly resolved.

A little soak in the bucket

A number of nurses have commented to us that we are running a hard and long marathon. We certainly feel this is a fitting analogy! So often we feel emotionally and physically drained, and it's often hard to keep our spirits up. We often say to each other, "Let's just take them home now!" Obviously if we were to think about that realistically, our babies would never survive if we took them home now. And so that just highlights how thankful we can be for all this technology and science, the NICU staff, and the healthcare system for keeping our little miracles alive!

In her devotional called "One Thousand Gifts", Ann Voskamp writes: "We give thanks to God not because of how we feel but because of who He is." This really resonates with us. Yes, God has given us SO many reasons to be thankful... our triplets have defied so many odds. Statistically, no one would have predicted that all 3 would have survived this far. The doctors told us multiple times that they weren't sure that Malachi and Liam were going to pull through a rough patch. 3 beautiful babies... so much to be thankful for. And yet, still so much emotional anxiety and stress and unanswered questions and uncertainty and exhaustion and suffering... We need to continue to trust and hold on to Him because of who He is- the God of grace. He is with us every step of the way, no matter what the future holds.

Happy Due Date!

Today is the triplets' due date! They are 103 days old. On Day 100, Liam weighed 6 lbs 8 oz, Taylor weighed 6 lbs 4 oz, and Malachi weighed 5 lbs 10 oz. Liam has outgrown all preemie clothing (he is so long!), and Taylor and Malachi are starting to outgrow preemie clothing as well. Our babies had a busy week this past week, and it hasn't been the easiest.

 

One of our primary nurses made "100 DAYS" banners at home for each triplet 

which even included their footprints  

Liam Josiah:

Liam's blood sugars were stabilized this past week because he has been receiving extra sugar/calories in his food to keep the numbers from dipping too low. The IV from last weekend was slowly weaned off early this week, while more sugars were added to his milk so as to have a less invasive way to stabilize his sugars. In the meantime, he continues to be poked at least once every 12 hours to check his blood sugars. On Saturday evening, Liam had another low blood sugar, even though his milk was still fortified with extra sugars. This was really disappointing, as he had been stable for a full week. The testing continues with the endocrine team monitoring Liam as well. So far, only one test has come back abnormal, and that is that his insulin levels were a bit high. We hope and pray to have some more answers in the coming week, and that it is nothing serious for our little man. It is somewhat unsettling to have not only the unknown blood sugar issues, but also the unknown jaundice issues...

In terms of respiratory needs, Liam has not been weaned down again this week. The respiratory therapists tried to turn down a setting this week but Liam needed to go back up. This was also disappointing for us, as Liam has been "stuck" on the same settings for a few weeks now. 

All the triplets had immunizations this week which was a bit hard on them. They also had their weekly eye exams, which showed that Liam's eyes have become a little worse over the past week. To put it simply, his nerves are not developing properly in his eyes, as is a common problem for micro preemies. This will of course be monitored closely, and again we hope and pray that it does not become any worse and require intervention. 

Lastly for Liam, we had some troubling news that a recent X-ray showed 2 fractured ribs. Naturally we were quite alarmed, especially since we don't know the cause. It is likely that the fractures were during a period of time when Liam's bones were very weak due to being born so prematurely and therefore fractured very easily. This probably happened a number of weeks ago, as the X-rays show that he is healing. We feel so bad for our little boy, especially because he was likely in pain and we didn't even realize it. It does appear that he is healing well now and doesn't seem to be in any pain.

Taylor Joy:

On Tuesday morning, our baby girl was transferred to a different part of the NICU. For the 103 days that they have been in the NICU, they have been in Level 3 care, which is the most intensive care. Taylor isn't quite graduated to Level 2, but is in between these two levels in a "step down" area. We were quite disappointed because now we have to split our time more deliberately between our babies, instead of being able to hang out in one area. However, we are very thankful that none of our babies have been tranferred to a different hospital yet! This is a very real possibility in the future, as the healthcare team has recently warned us again. The team will do their utmost to keep our sweethearts together, yet it all depends on the amount of beds available in the hospital and the level of needs of the babies coming in. 

During this week, a plan was formed to try Taylor off of all breathing support next week Wednesday. We were so excited to see how she would do! On Saturday morning, Jodi walked into Taylor's bedside area and had a beautiful surprise: no CPAP on our baby girl! It was almost surreal to look at our little sweetheart's face, hair, head... was it really our baby? We hardly recognized her! We had seen her without her CPAP for short periods of time, but her face was always quite squished from the CPAP mask. We cuddled and stared at our sweet baby girl a lot that day, but in the evening Taylor had to go back on some respiratory support because she was breathing too quickly and working too hard to breathe. This time, she was put on support called High Flow, which is a tube under her nose giving some pressure or flow to help her breathe. The respiratory therapists tell us that it could be another 2 weeks or so before she will come off, but it all depends on her. In any case, it is an exciting step in the right direction!

Snuggles with Daddy

The size of Taylor's handprints and footprints on Day 1 compared to Day 100

Malachi John:

Our littlest guy also had a busy week. On Wednesday, the doctors ordered a chest X-ray to look at Malachi's lungs, since he was not having high oxygen saturations (he was not able to take the oxygen into his blood at a high enough percentage). The chest X-ray unexpectedly showed that his lungs were hyper inflated. The doctors discussed that this could be from too much pressure support and decided to try drop his pressures drastically, change the type of support he was receiving, and see how he did. This all happened in the evening and we went to bed a bit nervous... how would our little man do? The risk of collapsed lungs is something we know well with our Malachi, yet we also knew that the respiratory therapists knew what they were doing. Overnight, Malachi had to slowly go up on the pressure supports as his blood CO2 levels were too high and he needed more support. The healthcare team finally decided to try get Malachi back on the machine that the hospital trialled a few weeks ago. They ordered the parts and got him set up by Friday afternoon. Although the software is technically expiring (the trial is over), the team is doing their best to advocate for Malachi to stay on it. 

The other big issue that Malachi faced this week was that his nostrils kept collapsing while wearing the CPAP mask. He has had this problem before, but it happened a lot more often this past week. When this happens, he needs to have nasal prongs on instead of the mask. However, this makes him very upset and unsettled, most likely because he is in pain. He has had several nose bleeds from the nasal prongs already. Between the painful nasal prongs, nose bleeds, high pressure constantly flowing through his nose/mouth, getting hot and sweaty from the heated air coming through the CPAP machine, excess humidity dropping on his face from the humidified CPAP air... our hearts go out to our poor little man! He has to put up with a lot every day.

As of Sunday evening, he is much more settled on his ventilation and the doctors are happy with how he looks back on the trial program. He still loves to be cuddled and touched, and so he got lots of extra cuddles this week because he needed the extra love! 

Malachi's first time in a vibrating chair. The nurses were trying to settle him while

he had the nasal prongs in.

Lately we have been receiving a lot more requests to come visit and hold our babies. We really understand and appreciate the care and love for our babies! However, we again want to stress that babies born at around 25 weeks have immune systems and development in general that is very much behind other babies. While they are now full term, they are not nearly as resilient as normal full term babies. All of the triplets also have chronic lung disease at varying degrees (Malachi, of course, has severe chronic lung disease, while the other two are not as severe). In all their cases, sicknesses for our little ones are way more serious than a "regular" baby. Yesterday, a nurse told us that if Malachi catches a simple cold or influenza virus at this stage in his life, he would most likely need to be intubated for a minimum of a month before starting the whole CPAP journey from the beginning again..! We have also heard many scary stories of other micro preemies getting sick during the first few years of their lives. 

All of this means we have to be germaphobes to protect our babies' lives. Constant hand washing and hand sanitizing, clean clothes, showers, and limiting our visitors are all ways that we need to protect them. Some doctors and healthcare professionals recommend no visitors or trips to public places for months, if not years after we go home... So we hope that you can understand why we turn down most visiting requests. We would love to "show off" our adorable triplets, but it is simply not an option yet. One day, the Lord willing, they will catch up developmentally to their peers. We are told that this will take a number of years but generally before they go to kindergarten.

We are forever grateful for your prayers and your support! We are so often reminded of our wedding text: "Trust in the LORD with all your heart and do not lean on your own understanding..." (Proverbs 3:5-6). We are entirely dependent on our Heavenly Father in every moment.

3 Months

The triplets turned 3 months this past week! It is so crazy to think that they are already 3 months, and yet they aren't even at their due date yet. This past week, Nathan was still recovering from a cold and it was 14 days before he was finally able to come back into the NICU and touch the babies again... today was his first day that he was able to hold a baby and it was emotional for him! Another very emotional moment this week was when the nurses and respiratory therapists arranged for Jodi to hold all three babies for the first time ever. This took a lot of coordination and work in order to keep all the babies on their ventilation and stable but it was very successful. Jodi wasn't the only very excited person in the NICU, and many people from the healthcare teams popped in to take a look. 

Liam:

Our oldest little guy had a bit of a rougher week. On Monday during his standard weekly blood work, he had a blood sugar reading that was low. The team started to monitor his blood sugar every 3 hours and did more blood work to check for infection. The infection markers came back negative but every so often Liam would have low blood sugars again. Some sugar was added to Liam's breast milk, but later in the week, his sugars were still periodically quite low. On Saturday, his blood sugar was so low that he needed an IV inserted in order to give him sugar intravenously. More blood work has continued to be done but so far no answers have come up. This is a bit stressful for us as parents, as we would like answers. However, the doctors assure us that it could be "flukey" and isn't necessarily something serious. On Monday, the endocrine specialists will examine Liam to rule out a few more possibilities. 

In the meantime, Liam continues to grow and is still our biggest baby at over 6 pounds! His respiratory supports have not improved this past week, which is to be expected considering all that he has went through this past week. On Friday, the triplets also had another RSV needle to protect them from getting cold viruses. This also is hard on them and they usually have a rougher day- particularly in terms of higher respiratory support needs. On Monday and Wednesday of this week, they are also due for different needles. On Tuesday they are due for their weekly eye exams. All of this will make for a difficult few days for our little sweethearts, but we know that it's all important for them to go through.

Taylor: 

Our sweet little girl is still growing well too, and has also passed the 6 pound mark! She has started to have different types of cries, other than just an "angry cry". It's exciting to see little developmental differences in our babies, although her "sad cry" tugs at our heart strings...

In terms of her respiratory needs, Taylor has not been able to come down on her CPAP settings either this week. It has been frustrating that both Taylor and Liam have stayed the same in the past two weeks, but the healthcare team assures us that this is what often happens with micro preemie babies who have chronic lung disease, as all of ours do. Further, when the babies have any tests, needles, eye exams, etc. during the day, the healthcare team does not try to wean their respiratory settings. The general rule is that the babies should only have one thing happening in a day. Today, the respiratory therapists are trying again to turn down one of Taylor's settings, but it's too early to report whether or not she is tolerating it. 

Malachi:

Our smallest and youngest and sickest little man has been tried on two new types of respiratory machines since the hospital's new machine trial has ended. We have been keeping a close eye on Malachi to ensure that we would advocate for him to go back on that machine if he went "backwards" at all. This was a bit stressful, as we really have to learn the different types of machines in order to keep up and know what exactly is going on. We also had to ensure that the new nurses, respiratory therapists, and doctors were filled in and up to date with the details of Malachi's situation (they usually are). The healthcare team was on board with us to advocate to the administrative team for Malachi (to buy to the new parts needed to put him back on the trial machine). At this point, Malachi is on standard CPAP just like his siblings, which means he controls every breath. His settings, however, are much higher than his siblings. Malachi is doing very well on this so far and his oxygen levels have come down a bit. He still sounds like a wind tunnel and needs a soother to keep the air pressures inside of him. 

Malachi has been growing slowly and is still behind his siblings a fair bit. He is awake way more often than his siblings and quietly looks around with his big blue eyes. We are so thankful for his mostly laid back personality, as he has to put up with a lot! He also likes to snuggle. All of our triplets are starting to really follow sound with their eyes and turning their heads when they are awake and hear us talking.

Thanks for your continued prayers and support for our family! 

38 Weeks Gestation

Tomorrow the triplets are 38 weeks gestation and on Thursday they will be 3 months old! They have had a fairly quiet week. We are thankful it wasn't a busy week because we have both had colds this week and have been unable to go in to see our babies. Nathan got a cold last Sunday and is just starting to get over it... hopefully he can see them again sometime this week. Jodi got her cold on Monday and is finally totally better. Generally, if one parent is sick, the other should not touch or hold the babies either. This makes us both desperate for the other to get better too. It is so hard and frustrating and sad to not be able to see or touch or hold our babies!   

Liam:

Our Liam graduated to a crib this weekend! This is because of a number of criteria were met. He weighs enough, has had his RSV vaccination (RSV is basically a cold), and can maintain his temperature well enough. He looks so big in his crib, athough the cribs in the NICU are smaller than normal cribs. It is easier to interact with babies in cribs, so we are excited about this new step. Liam now weighs 2645 grams, which is over 5 pounds! 

Liam's respiratory needs have stayed the same this week and he was not able to come down on any of his CPAP settings. However, his jaundice levels have come down this week. They are still much too high but moving in the right direction with the help of medication. The test results have all come back negative for diseases or serious issues, so at this point we are assuming it is from prematurity and "normal" issues for premature babies. We will need to wait to see if his jaundice levels will return to normal. 

Taylor:

Our baby girl also moved to a crib this past week! She weighs in at over 5 pounds as well- 2550 grams.

Taylor's CPAP settings have also remained the same this week. The healthcare team did wean her settings down once, but she needed to go back up on her settings when her respiratory rate average went up. The team will likely try again in the next week to challenge her. We are trying very hard to remain patient because Taylor's settings are fairly close to coming off her CPAP. This could mean going on low flow or high flow (a tube under her nose), or no respiratory support at all! However, we know that it could still be weeks to get to this point. Patience is not only a virtue but also an absolute necessity in the NICU..!

Malachi:

Our youngest sweetheart is falling a bit behind his siblings in terms of weight. He is 2230 grams, which is not yet 5 pounds. He often loses weight, rather than consistently gaining. The dietician has been continuing to monitor this. Malachi is not quite eligible for a crib yet. This is because his respiratory needs are so high, that his tubes cannot be disconnected momentarily (which needs to be done in order to take him out of a crib). However, he does meet the other criteria and the incubator is often too hot for him. 

Malachi's respiratory supports remain high and were unable to come down at all this week either. However, we are happy that he has not gone backwards or needed more support. We are continuing to correspond with the company representative for the machines that the hospital was trialling. At this point, Malachi remains on the same respiratory support, and the plan is to keep him on it. This means that the hospital needs to buy the special feeding tubes that have electrodes on them to measure Malachi's diaphragm activity.

 

We are thankful for the nurses who have been understanding while we have been sick. We have been asking them to snuggle our babies so that they can still have that human interaction in our absence. The nurses have been more than happy to do so, and often have time to snuggle them for an hour or more during the night shift. We even have been emailed and texted photos of our little sweethearts! A small silver lining this week has also been that we could have some time to get some errands done, since we weren't able to be in the NICU. We even set up cribs in our baby room! 

The emotions continue... yet we are comforted also through our pastor with the words of Colossians 3 verse 15: "And let the peace of Christ rule in your hearts, to which indeed you were called in one body. And be thankful..."