Day 164

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

Peas in a pod

Liam:

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

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

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

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

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

Liam's first bottle!

Happy boy

Goodnight kisses

Taylor:

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

Posing with her Easter gifts from the Ronald McDonald House

Pretty girl

Malachi:

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

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

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

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

Finally allowed back in his swing which he loves

Out for a snuggle

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

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

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