37 Weeks Gestation

It's crazy to think that babies are being born every day that are actually older than our babies, even though the triplets have been out of the womb for almost 12 weeks. Tomorrow they will be 37 weeks gestation. The triplets had a fairly busy week this week and it has been another emotional one for us parents.

Liam:

Our oldest little sweetheart has had the quietest week of the three. He finished his antibiotics for his urinary tract infection and is off of his IV again. However, he is still jaundiced and we still don't know why. On Monday morning, Liam will go "downstairs" for a HIDA scan which is a nuclear medicine scan. This scan will check to see that all of his intestines, liver, gallbladder, etc. are all working properly and not the cause of the jaundice. It is the doctors' hope and belief that Liam's jaundice is still because of his prematurity and all the time he spent on IV nourishment instead of breast milk (during some of his infections and surgery). However, they are doing the HIDA scan to rule out a significant liver disease and other types of complications. We are thankful that the other tests done last weekend and this week have ruled out other potential diseases. 

In terms of his chronic lung disease and respiratory status, Liam has come down on one setting this week. His infection set him back a bit but he is slowly improving. He is also still growing well and has recently just hit 5 pounds! He still loves his soother and loves to be swaddled with his hands by his face. 

Taylor: 

Our baby girl has had the busiest week for a change. Every Monday, all of the triplets have very thorough blood work done. This past Monday, Taylor's blood work showed she had low blood sugar. This was investigated and subsequent tests continued to be low. We also noticed that she was not her usual self. She didn't protest during diaper changes, CPAP mask or nose prong changes, and was generally paler looking. The doctors take parents' observations really seriously since we see the babies every day. Thus, she was immediately started on antibiotics. She also started a blood transfusion for low hemoglobin. After a few days, it was determined that Taylor had a blood infection, urinary tract infection, and eye infection! No wonder she wasn't herself. Thankfully, the infections were caught quite early on and did not impact her respiratory needs. Taylor started acting more like herself in a few days and has a couple more days of antibiotics left. Because all of the infections were going on, no changes were made on her ventilation settings. Hopefully we can make some steps forward this week with weaning her CPAP. 

Taylor has also continued to grow well and is approaching the 5 pound mark. She is still feisty. She is either perfectly content or very upset... there's no in-between with our Taylor! She also loves to be swaddled and likes her soother, although not as much as her brothers do. 

Malachi: 

Our youngest cutie has had a very good week in terms of his breathing support. Almost two weeks ago, he was put on a brand new machine approved by the hospital for a trial. On that day, the machine prevented him from being put back on the breathing tube, but he was switched back and forth to other machines in the following days (based on his needs). There was a period of a week and half or so where he was very close to being re-intubated. This past week, he was put back on the new machine that the hospital was trying out to see if they would buy these types of machines. This time, the ambassador for the company was around and teaching the respiratory therapists all about the machine. A new component was tried out on Malachi which hadn't been tried on him before. To put it simply, the feeding tube down Malachi's throat has electrodes on it that measure and monitor the activity of the diaphragm (the muscle that moves the lungs). Thus, the machine shows how much Malachi's lungs are working and how much support he needs. It is pretty amazing technology (and expensive!) and it has been working very well for Malachi. He was able to come off of the oscillator and is able to control how many breaths he takes. However the machine still gives him a set pressure to keep his lungs open, and then adds any amount of pressure (determined by the electrodes) that he needs for each specific breath. Since he has been on the machine, he has been able to be weaned off some pressures (although he is still on very high settings)! We are happy about this also because the high pressure seem so uncomfortable for our little man! Imagine having a very strong fan blown into your nose 24/7 that flaps your lips if your mouth is open at all. 

Although this ventilator has worked so well for Malachi, the hospital's trial ends on Wednesday. The ambassador has talked quite a bit with us and she is willing to try hard to leave the ventilator with Malachi, or at least the electrode parts so that he can use the same settings on a different machine. We hope and pray that she will be successful, as we have never seen Malachi's breathing supports so stable and low.  

Our youngest triplet has still not been growing very well, so he has received some extra calories added to his already fortified breast milk. He loves his arms wrapped up when he sleeps and absolutely loves his soother. We are thankful for this because he often has it held in his mouth to help keep the air pressures in. 

This past week has been emotional, as each week is. There are always ups and downs and we seem to handle it differently each day. To add to the emotional difficulty, a baby at around the same age as our triplets passed away suddenly this week. The parents had been staying at the Ronald McDonald almost as long as we have and it hit close to home. Our hearts ache for the parents. We also heard two separate stories of premature babies who caught colds when they were home and a few months old. The colds were very serious for them, and the babies needed to be intubated and almost died. It really drove home to us how fragile our little ones are and will be for months and even years to come. It also makes us anxious to think of the great responsibility we have to protect them as much as possible from germs that are minor for the average person but very serious for them. However, we know that ultimately our Father in heaven has their lives in His Hands and they are His covenant children.

The other emotionally difficult part of this week was during our family meeting, when our doctor estimated our going home date to be even later. They estimate that it will be April before one of our triplets (likely Taylor or Liam) will be able to come home. This was hard to hear, as we were really hoping for early March. Malachi's going home date will be much later still. All of this is estimation based on what the doctors have seen through their careers, and so we hope and pray that our triplets will continue to grow and become healthier quickly.

Thank you for your continued prayers!

Day 75

Tomorrow the triplets are 36 weeks gestation. We are noticing more and more that the triplets are starting to look like newborn babies, even though they have 4 more weeks until they are technically full term babies. Taylor is especially starting to get chubbier like a newborn. However, they are all still small at just over 4 pounds and in preemie-sized clothes.

Liam Josiah:

Liam continues to do well breathing on CPAP. This past week he actually caught up to Taylor's settings but this lasted about half a day as he couldn't quite handle it. He is sometimes not needing any oxygen and breathing room air, which we are also excited about. 

In the past few weeks, Liam developed jaundice and the healthcare team was starting to do some investigations. In the middle of these tests, it was determined that Liam had a urinary tract infection and had to go on IV antibiotics again. He has a few more days of these antibiotics before his IV can come out. 

The testing continues to determine the source of the jaundice, and will continue into this coming week. He has been put on some medication to try bring down the jaundice levels as well. On Friday night, the doctors called us that one of the tests came back showing some issues with Liam's metabolism. The gastrointestinal team was called to investigate and they immediately rushed some urine and blood samples to Toronto and Ottawa to test for a potential disease. We were told not to google the disease (which we couldn't spell or even pronounce so we would not have been able to anyways) because the potential disease is very significant. Liam's was also immediately put on special formula mixed with breast milk and remains on it. We were very thankful when preliminary test results on Saturday showed that Liam most likely does not have the disease. We are still waiting for more results that should be in Monday or Tuesday. 

The questions still remain, though, what the jaundice and metabolic issues are with Liam. There is still the possibility (which we pray to be the case) that it is all simply because of his prematurity, multiple infections, multiple antibiotic rounds, and all the IV nutrition he was given when he could not have breast milk. Hopefully we can have some answers this week. 

Another relatively small issue is that Liam has a stomach hernia that has been getting bigger. Hernias are common in premature babies since their little bodies should not have to be eating, crying, feeling pain, and all that comes with being outside the womb. Our little man will need surgery before he comes home but this could still be weeks in advance yet.

Taylor Joy:

Sleeping, eating, and growing has been on Taylor's agenda this past week and she's been doing it all very well. Her CPAP has come down to lower settings again and we are trying not to get too excited about when she might come off of her CPAP... because it still could be weeks away. Taylor is still our feisty little sweetheart, and can show that she is very upset in a short amount of time. We have been noticing, however, that as parents we are able to provide more comfort to our triplets. When they are crying and upset, they immediately become calm when they are placed on our chest. This makes us so happy! 

One of the hardest things here in the NICU is how we cannot be there for our babies the way we want to be. We aren't allowed to pick them up without a nurse, and it has to be at specific times when we are allowed to. We generally can't take them out when they are in the middle of a feed, which are over 1.5 or 2 hours every 3 hours. If they are sleeping, we have to leave them alone so that they can grow as much as possible. It's sometimes hard to feel like good parents or that we are even making a difference in their little lives. We try very hard to plan around their specific feeds and schedules (such as ultrasounds, eye exams, x-rays, etc.) so that we can hold all three babies in one day and bond as much as possible. We can't wait for the day when we can scoop them up and kiss them all over without having to carefully plan with a nurse. However, this has really made us treasure each time we get to hold them and we feel as though we will never take the cuddles and "normal parenting" for granted!

Malachi John:

Our smallest sweetie is still hanging on to his CPAP ventilation. We have had multiple times this past week where he was nearly put back on his breathing tube. Today, too, the doctors warned us that he may be intubated sometime today. It is emotionally difficult to always be worried about whether or not he will be intubated. Although Malachi is on an oscillator which gives him little puffs of air all the time, he often tries hard to breathe above the machine. This may be because he is not able to get the gas exchange he needs. It also is likely why he is not gaining weight as quickly as he should be, as he is working so hard. Chin straps and soothers have also been used on Malachi to try keep the high air pressures from leaking out his mouth rather than pushing into his lungs. 

As we start this new week, we again look to the LORD for our help and our strength through all the ups and downs. Psalm 121 reminds us to lift our eyes to Him! 

January 14, 2017

The triplets will be 35 weeks gestation on Monday and are currently 9 and a half weeks old. Time has gone very fast and very slow all at the same time!

Liam: 

Our Liam's recovery from surgery has been incredible. We praise God for the huge improvement we have seen in our little man! In the first few days following surgery, his heart rate was quite low and a cause for concern. However, on Sunday night it returned to normal and the cardiologist was no longer needed to assess Liam. It's possible that the pain medication was the culprit and it took a while for the medication to leave his body. On Monday afternoon, Liam's breathing tube was pulled out and he was put on CPAP! The respiratory team usually tries to start with the lowest type of CPAP before moving up to higher support levels and different types of settings. We were so happy when Liam was able to stay on the lowest form of CPAP (which is what Taylor is on)! This means he is breathing on his own while the machine gives a constant pressure to keep his lungs open a bit, so as to reduce his workload. The constant pressure he was receiving was a little higher than Taylor's but still very impressive for a little boy who had been intubated for so long. On Friday, they were able to wean the pressure down a little and he again responded well. He is steadily moving towards breathing in room air but still needs some extra oxygen for now. We are so incredibly thankful that the surgery has helped Liam so much and that his recovery has gone so well! Our God has answered many prayers! 

One concern that has been ongoing in the last couple of weeks is that Liam has some jaundice. This is not the same kind of jaundice that can be fixed under phototherapy lights. Instead, it has to do with the functioning of his liver, kidneys, and gall bladder. The doctors believe that it could be from all the infections Liam has had and the surgery on top of everything. They expect it to clear up soon. However, if it hasn't cleared up by Monday, then he will start some testing to check that everything is working as it should.

We are back to enjoying snuggles with Liam since he can come out of his incubator again. After the surgery, he did not gain weight, but has started to gain again in the last few weeks. 

Taylor:

Not much has changed with our baby girl. She is still on the same CPAP settings as last week. The respiratory team did try to wean her settings a bit lower this past week but her breathing started becoming much quicker and so they put her settings back to where they were. She is still doing very well, though, and is usually breathing room air without extra oxygen support. Sometimes she needs a bit extra for various reasons. 

In conjunction with her reflux, Taylor has quite a bit of air in her belly which causes her to spit up and feel uncomfortable. Air in the belly is quite common for babies on CPAP since they are getting air pushed through their nose all the time. However, Taylor's belly was measuring even bigger this past week and so they have been keeping a close eye to make sure that nothing else is going on with her (such as an infection). So far it seems to only be air from the CPAP. 

Taylor has been growing well. She also has come out of her incubator a number of times again this past week to snuggle with her Mom or Dad and sometimes with Malachi. Both siblings do very well when they come out together.

Malachi:

Last week and weekend, Malachi was just extubated and put on CPAP. This was due to a round of steroids, which he finished on Tuesday.  For a number of days after he was put on CPAP, he was just hovering around the point where he would need to have the breathing tube put back in. We were constantly worrying and waiting for the phone call. The doctors explained that the steroids seemed to have helped but not as much as they could have. It seemed that Malachi would have gotten much worse if he hadn't had the round of steroids... they had only been preventing him from getting worse rather than helping him get much better. Finally on Thursday, it seemed Malachi would need to go back on the breathing tube. His oxygen levels were very high and his settings were also very high. The healthcare team tried so many different options such as changing the position that he was laying in, trying different size masks and nose prongs, changing his settings... We met with the neonatologist on Thursday afternoon and he told us that they were trying one last option before putting the tube back in. They also wanted to try a type of steroids that are inhaled. These steroids are similar to an asthma puffer and have very low risks compared to the steroids he was on before. The doctors explained that if our little man would be intubated again, it would likely mean months before he might eventually be well enough for CPAP- not to mention the months of CPAP after that. In the meantime, an echocardiogram was done to check Malachi's PDA and make sure that wasn't an issue that had reappeared. Malachi was by no means stable enough for surgery, yet the doctors wanted to know in case we had to resort to surgery if Malachi's breathing got bad enough and there were no more options. Thankfully, the results showed that his PDA was still almost closed. As we stood by Malachi's bedside with the team who were doing their best to keep our baby extubated, a respiratory therapist suggested to try a breathing machine that had literally just been approved that same afternoon by the hospital to be used in the NICU. Praise the LORD that this was the answer at that time for our Malachi! His oxygen support levels started coming down, the carbon dioxide levels in his blood started dropping (they had been too high for a long time), and his breathing became a lot more stable. On this form of CPAP, Malachi is breathing on his own with a set pressure in his lungs to keep them inflated. This pressure is very high, especially compared to Liam and Taylor. In addition, the CPAP detects when Malachi takes a breath and adds extra pressure to help him inflate his lungs further. He needs a chinstrap to keep his mouth closed to try and keep all the air pressure from leaking out of his mouth. We were so relieved and thankful after such a close call, although it was hard to stop holding our breaths after all that. We were still concerned that Malachi would tire from breathing on his own and need more support again. The respiratory therapists were confident, however, that they had more options now that Malachi was stable. Malachi was also able to go back to a machine he was already on before, now that the team knew what worked for him. The timing of how everything worked out was truly miraculous and we praise God for it! If Malachi is able to stay on CPAP, it will still be a long road and he will likely stay in the hospital much longer than his siblings. However, it is a shorter road than going back on the breathing tube and having his lungs continue to be damaged. 

All of this has also led us to questions about Malachi's future. We know that he has chronic lung disease which means his lungs are very sick. These lungs won't heal anymore, as the damage is permanent. However, new lung tissue will continue to grow as he gets bigger until around age 8-12. No one knows how his damaged lungs will affect him in the future. It could mean asthma, lots of respiratory sicknesses like pneumonia, or being unable to run without getting winded... but it could also not bother him at all. Time will tell. However, we do know that with Malachi especially (but also very much the same with his siblings) we must do our very best to help him avoid getting sick in the first number of years of his life. Even a common cold could affect our triplets way worse than a normal healthy baby. This obviously means that as parents we are doing our best to avoid getting sick ourselves and also being careful with having visitors.

Our nurses made these posters- one for each triplet!

At the end of another long week, we praise God that we have three beautiful triplets who are all 4 pounds each and on CPAP of some form! We have still got months in the hospital and we are way behind a lot of other babies at the same gestation as our triplets, yet we have lots of reasons to be thankful. "Bless the LORD, O my soul, and all that is within me, bless his holy name!" (Psalm 103:1).

Day 60

This week has felt very long to us. It seems like a lot has happened... although maybe it's because it has been emotionally very tiring.

Liam:

Our little man finished his antibiotics early this week and was fully recovered from his pneumonia. On Wednesday, the doctors received his echocardiogram results (from Tuesday) and confirmed that Liam was still a candidate for heart surgery to close his PDA. We signed the consent forms and were told that Monday was most likely surgery day, although if anything sooner came up they would try slot him in. That night we received a phone call in the middle of the night that Liam's surgery would be the next day (Friday) in the afternoon. Usually, babies are brought down to the Operating Room for surgeries, but Liam couldn't go because of his oxygen level supports. Thus, the OR needed to come up into the NICU to perform the surgery. No one was allowed in the NICU during the surgery and so we anxiously awaited a phone call outside. After about an hour, the surgery was over and we were allowed back in to see our sedated little guy. The doctors were very happy with how the surgery went. Although there were a number of potential serious complications, the doctors felt that so far everything seemed well. As of Saturday night, Liam continues to do well. His pain medication has slowly been weaned and he seems to be comfortable, though still quite sleepy. We were told before his surgery that his oxygen supports would likely go higher immediately following surgery, before going down in the next few days. We are very pleased that this has not been the case and instead, Liam's breathing support levels have gone down! It's still early to say, but it certainly seems as though the surgery is improving his lungs and breathing. Hopefully in the next week, he can come off his breathing tube and move on to CPAP. The one issue post-surgery that remains to be of concern, however, is that his heart rate is quite low. A number of tests have already been run and haven't revealed any potential reasons. The doctors have contacted a cardiologist to assess his heart, which will likely be tomorrow. 

Liam still remains our biggest triplet at over 4 pounds. This is double his birth weight! We can't wait to hold our sweetheart again soon! It has been so hard to feel entirely helpless as we watch our little baby go through so much...

 A few hours post-surgery

Taylor:

In this past week, Taylor has switched back and forth a bit on her breathing support levels but overall is still doing very well. The doctors feel as though the main reason why she fluctuates a bit is because of reflux. This has been an issue that Taylor has been having for a number of weeks. She is still growing well, though, and has passed Malachi in weight. She is 3 pounds and 5 ounces. We have enjoyed some more hands-on care with Taylor, such as little sponge baths and learning how to swaddle her (around all of the monitors and probes of course). 

A quick glimpse of Taylor's face during a bath

All bathed and dressed by Daddy and Mommy

Malachi: 

Our youngest and smallest sweetheart started steroids last weekend and they have certainly made an improvement on his lungs. On Wednesday, he was able to come off his breathing tube and put on CPAP! We were thrilled and thankful. His support settings were great at the start. Over time, however, the doctors noticed the carbon dioxide levels in his blood were rising too high. To compensate, Malachi needed to come up higher on his breathing support levels and eventually was put on an oscillator again to try improve the air exchange in his lungs. As of Saturday evening, Malachi is still on CPAP but has quite high settings. We are nervous that he will need to be re-intubated in the next week, especially since his steroids are being weaned. However, we are thankful for each day that he is remaining on CPAP so that his lungs can continue to heal from the damage that the breathing tube causes on the lungs. We are really enjoying our snuggles with our little man since it is way easier to hold a baby on CPAP rather than a baby on a breathing tube (this is because the breathing tube needs to stay in the exact same spot so it doesn't go too deep into the lungs or come out too far). 

Malachi has not been gaining a lot of weight lately. Some days he loses weight. We are guessing this might be from his high activity level. He loves to look around and move around in his incubator. He seems to be awake a lot more often than his siblings. Hopefully he can start growing and gaining some weight a bit better! On Thursday, Malachi met his sister Taylor for the first time since birth. A number of weeks ago, Jodi was able to hold Liam and Taylor together when they were both on CPAP. This time, Malachi and Taylor got to snuggle together! They seemed to really enjoy it and slept soundly together.

Malachi and Taylor bonding for the first time

We want to express our thanks again for all of your prayers and support! We have felt so uplifted and encouraged by you all. What a blessing it is to be among family, friends, and the communion of saints both near and far. 

January 1

Happy New Year from our family to yours. May our Heavenly Father be with each of you in 2017 and grant you His blessings. 

In this past week, Jodi was finally able to go into the NICU on Wednesday and Nathan on Friday. We were emotional and amazed to see the changes that had occurred in the 7-9 days we hadn't seen them. It's incredible how growing a few ounces can make such a difference in such tiny babies. 

Liam: 

On Monday, Liam was showing signs of infection yet again. Tests showed that he had pneumonia. This is most likely from the breathing tube. The doctors have mentioned a number of times that the breathing tube as well as IV lines and other "foreign objects" going into our babies are all potential sources of infection and so it was not a huge surprise to them when Liam contracted this lung infection. He immediately started a specific antibiotic for the pneumonia. Liam also had a few other symptoms such as diarrhea that led to more testing and being put into isolation for a few days but all of the tests came back negative. We are thankful that he seems to be pretty well over the infection although he has a little while longer yet on antibiotics. We are fervently praying that he does not get sick again but can stay well so that he can go for his heart surgery on the PDA if he still needs it. He will be reassessed this week to see if surgery is still needed, and if it is then the surgery will likely happen this week.

Liam has been growing well overall and is still our biggest baby. He likes to try and look at whoever is speaking around him and tries hard to focus. At this stage, the triplets cannot see very well and cannot even see colour but he sure is trying hard! 

Taylor:

Our baby girl is finally past the 3 pound mark! We had a pleasant surprise this week when Taylor was switched to the lowest form of CPAP and did very well. This form of CPAP does not give Taylor any breaths. The only thing it does is put some air pressure into her lungs to keep them inflated a bit. This is so that she doesn't have to work quite so hard to take in each breath. The pressure that she is being given can be weaned down a bit before she can graduate to the next form of breathing support which would no longer be a mask. While this will be the eventual goal, the doctors will not push Taylor to the next stage but will keep her here for a while. She is where she should be for her gestational age (33 weeks tomorrow). For now, she needs to stay on this breathing support, stay warm, take in lots of breast milk, and just grow, grow, grow! At around 34-36 weeks, babies are typically ready to start feeding orally, but they need to be off of all breathing support before they can start. This will be the next goal in conjunction with lowering the breathing support once Taylor seems ready. While all this makes us excited and optimistic, the doctors have warned us that: a) Taylor likely will go "backwards" a number of times and need more breathing support for various reasons and b) premature babies often have a hard time learning how to orally feed for a number of reasons as well. These reasons include getting tired easily, not knowing how to suck, swallow, and breathe at the same time, and not liking anything in their mouth because they think it will hurt (at this point they have had many painful or uncomfortable medical interventions in their mouths like breathing tubes, suctioning of secretions, feeding tubes, etc.) Time will tell how each of our little ones will do!

Taylor is allowed to start wearing little clothes!

Malachi:

Our youngest triplet has been staying the same in the last week aside from some issues with low sodium levels. However, the doctors started noticing that his oxygen support levels were slowly being increased. They began to express this concern to us and started discussions about a third round of a higher and longer dose of steroids. After much discussion and prayer we decided to start the steroids on Saturday. The hope is that in around 5 days, Malachi will be able to come off the breathing tube and put on a form of CPAP. We pray that the steroids will have this desired effect! However, steroids have a lot of potential risks or side effects. Of particular concern is the risk of problems with brain development. We know that each of our triplets are at risk for a lot of different issues with development such as difficulties learning, difficulties with muscle development or stiffness (cerebral palsy), and other developmental issues. These issues will begin to manifest as the triplets get older and they are simply because they were born way too early. With Malachi, however, the risks are significantly higher because of the steroids. With both Liam and Malachi, the risks are also significantly higher because they have been intubated and on a high amount of breathing support for so long. Again, time will tell! 

Malachi often smiles in his sleep.

As parents, we don't want to dwell on whether or not each of our triplets will have developmental issues in the future because we want to love them and enjoy them in each moment, rather than worry about the future. At the same time, we need to be prepared so that we can care for each of our litttle ones with their specific needs. As we move into this new week and this new year, we take comfort in Psalm 46:1 which says, "God is our refuge and strength, a very present help in trouble."