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.