Day 173

It's been a long week for us as parents. It seems like a lot has happened since our last blog...

 

The cutest sight we ever did see

 

It's not easy getting three babies to smile for a camera!

Liam Josiah:

Our little man has made some big changes! Over the last week, he has been able to get to the point of oral feeding all his milk! This means his NG tube (nasal gastric) came out hopefully for good! We are so excited and so thankful for how quickly he learned to orally feed! The occupational therapist was floored by Liam's progress. She says she cannot recall ever seeing a 25 weeker with chronic lung disease like Liam ever learn so quickly. It's especially impressive because he is a triplet- which means he should be behind developmentally. We are so thankful to our Heavenly Father for giving us this miracle.

Of course the next question on our minds was.. when can we take this little sweetheart home?! There are a number of things that must happen before he can come home. First, he needs to have a number of consecutive days where he is cueing for feeds (instead of being woken up every three hours, he must wake up when he is hungry approximately every 3-4 hours), drinking enough milk on his own (deciding how much he wants instead of forcing him to have the exactly calculated amount every three hours), and gaining enough weight. So far it looks like Liam is doing very well with this step. 

Second, Liam needed to have an inguinal hernia repaired. This happened on Saturday (yesterday) morning. Everything went very well during the surgery and we are again very thankful for this. With the surgery team's recommendation, we agreed that Liam would be given a baby epidural to freeze him from the waist down. This meant he didn't need to be put totally under anaesthesia and therefore did not need to have a breathing tube put in for the surgery. We were thankful that the breathing tube could be avoided, since Liam has had a long history with breathing support and we wanted to avoid any potential setbacks or complications with breathing. While the surgery was not as intense as the tracheostomy surgery or PDA ligation (heart surgery Liam had a few months ago), it still was a surgery and gave us a lot of anxiety and worry. Liam seemed to bounce back very quickly, though, and is already off his IV and taking full bottles again. Both Liam and Taylor still have large umbilical hernias that will not be operated on because they usually are able to resolve on their own.

A third issue that needs to be resolved before Liam can go home is that the fluid in his brain needs to be assessed one more time. In our last blog, we briefly mentioned that it appeared Liam was having fluid buildup in his brain. After yet another ultrasound this past week, we are still unsure if this is a legitimate cause for concern or if perhaps the ultrasounds are being assessed and measured differently by different technicians. We hope to have some better answers this week.

Finally, our little man still has some drops in his heart rate while he is sleeping (bradycardias). The healthcare team will decide this week whether or not these are serious enough that Liam needs to stay in hospital for monitoring, or if these are not a cause for concern. 

We are starting to get more and more excited at the thought that our Liam might actually be coming home soon..! We hope he will make it home before his 6 month birthday but we know enough that this is the NICU and lots can happen yet... 

 

Our 11 pound easygoing sweetheart

 Just about to go in for surgery

Snuggles with one of his two amazing Grandmas!

Taylor Joy:

Not much to say about our sweet baby girl except that she seems to get more and more smiley!

 

 

Snuggles with  Malachi now that he is all better

Malachi John:

Our little sweetie is finally off his antibiotics for pneumonia and his urinary tract infection. He seems to be feeling much better and has started to smile more again at his parents, nurses, and respiratory therapists. We can tell though that he is often unhappy, whether from the trach or from being too warm (happens often with him) or for other reasons. We are working on being better able to take him out of bed so that we can comfort him better and snuggle him more easily. It is very difficult though, as we need to ensure that the trach and the fairly heavy tubings are all secure. The trach tube is tied around Malachi's neck, but it cannot be tied so tightly that it could never be pulled out. If it was tied this tightly, Malachi's neck circulation would be cut off. Thus, there is always the risk that the trach tube will be pulled out by accident. It is very serious if this were to happen and so we need to learn how to carefully move and pick up Malachi while keeping the trach in the right place. It is usually a two person job. 

Malachi managed to pull out his trach tube on Thursday evening. The ventilator (breathing machine) started alarming and so did the monitors so immediately a team came running to get the trach tube back in. This is not something that is very easy, since you cannot just "shove it back in". It requires the right equipment. Within moments, Malachi's heartrate started dropping and his oxygen saturations started dropping very low as well. That's when Nathan walked in for a visit... Thankfully, the team was able to work quickly to resuscitate Malachi and he is okay. However, the incident rattled us yet again. We know that Malachi's trach tube will be pulled out again as much as we try to prevent it... he is a baby and doesn't understand that he cannot pull or push on his trach and tubes. But it is extremely scary when it does come out because Malachi is so dependant on the breathing support and there is not a lot of time to put it back in. When we witness events like this, we feel the huge burden of responsibility on our shoulders for when we go home to essentially keep our baby alive. 

Further weighing down our hearts this week was when we took a CPR course on Tuesday. Discussing and practicing the emergency scenarios made us think of what we might need to do with our own sweet boy in emergency situations. How can we ever take home such a fragile little boy? How can we take care of a our sweet boy when the potential for serious emergencies is so very real? How can we perfectly respond to emergencies (without just panicking) to keep our precious baby alive? Our heads and hearts are reeling with it all... Yet, we assured by the healthcare team that we will continue to learn and become more and more comfortable over time with the trach and with responding to potential emergencies. 

Speaking of Malachi's health care team, we are meeting more and more members of Malachi's team, as we start to move towards training to take him home. We feel so blessed to be surrounded by so many professionals who will work with us to take Malachi home and to support us while we are home too... doctors, respiratory therapists, RNs, dieticians, occupational therapists... the list is growing and growing! 

 

I love my Daddy... and my soother!

 

One of our little heroes

We certainly are blessed to be so supported by the NICU team, and also by our church community, friends, family... We are humbled by the love and support for our family. And even while our faith is being stretched and refined, we continue to trust in our Heavenly Father. He holds us and our precious sweet miracles in his Hands and his ways are perfect. As Isaiah 55:9 says, "For as the heavens are higher than the earth, so are my ways higher than your ways and my thoughts higher than your thoughts..."