Day 293

We thought we would start off this blog with sharing a few photos that the very talented Kelly Linde Photography took for us while Malachi was still in the NICU (about a week before his move to the PICU). We are so grateful to her for generously offering to take these photos for us. We will treasure the beautiful video and the photos, as we can look back and remember the everyday experiences of the NICU life. 

Since our last blog update, we have been very busy with preparing for going home. Between completing our training, ordering equipment, preparing our house, buying the necessary non-medical items we need for Malachi, booking lots of tests and follow up appointments, speaking to lots of different health care professionals, contacting and setting up new outpatient services, and practicing our skills on Malachi (extra trach tube changes, using the rescusitator bag daily, practicing getting him ready for a walk, hooking him up to our own home equipment, etc.)... each day ends up being quite packed with activities. We now have a tentative home date of Thursday September 28th! This date is a moving target, especially since we need to have trained home nurses lined up before we are allowed to go home. We are discovering that this could be difficult to line up in time but we are staying hopeful! We qualify for the maximum amount of covered nursing, which is 5 shifts of 8 hours a week. We are hoping and praying to have these 5 shifts at night, so that we will "only" have to stay up 2 nights a week. 

A trained person has to be awake and watching Malachi 24/7. This is largely why the hospital will not allow us to go home without nursing lined up. We would burnout in a matter of days, since Nathan works full time. This is also why we are currently in the process of hiring a nanny. We need to have 2 adults in the house at all times because one person needs to be watching Malachi and the other two triplets still require a lot of the normal baby attention and care. 

It's overwhelming to think about juggling it all. Sure, there will be times when all 3 babies are sleeping and calm. But there will also be those times where one baby is hungry, the other has a poop explosion and needs a bath, while the other is pulling on his tubing and needs to be distracted with a different toy. (We can't even imagine what it will be like when they start crawling! We will need to be following Malachi constantly with all his machines to make sure he stays connected! Not to mention how Liam and Taylor already try grab at Malachi's tubes and cords and put them in their mouths...) 

It gives us such deep and overflowing joy to think of all 5 of us under the same roof. We can't WAIT to be together and not need to be constantly missing either Malachi or Liam and Taylor or each other. We can't WAIT to relax together instead of always bouncing back and forth between the hospital. We can't WAIT to be alone in our own home and around our own table and in our own bed... (goosebumps just writing about it!) The joy and anticipation is extreme. But just as extreme is the fear and nervousness over taking Malachi home. We are quite confident in his everyday care and even trach changes are getting less scary. But ultimately it's the intense fear of an emergency situation. We are "trained" many different types of emergency scenarios but we have never had to take control in a real emergency. Will we panic and forget everything? Will we be able to remember what to do and when? Will we react quickly enough? Will the ambulance arrive on time? As going home becomes less of a concept and more of a reality, the weight of responsibility feels heavier and heavier. We know Malachi's life is in God's hands ultimately, but we know that his life is medically fragile and dependent on medical equipment and machines. It's our responsibility to ALWAYS be on guard and paying attention. It will be mentally exhausting and draining. 

But he is 1000% worth it all (and that extra zero is not a mistake). 

So on to the updates on each triplet...

Liam: 

Our little man continues to show quite the personality more each day. When he's happy, he lets everyone know it by shrieking loudly and laughing out loud. When he's upset, he lets everyone know it too by complaining and sometimes having very loud meltdowns. He concentrates quite intensely on toys and smiles very easily. He is so fun to play with! This past week he started solids and caught on pretty quickly to it. He's also close to sitting by himself. We haven't had appointments lately with Liam and Taylor because we are trying to book them in with Malachi's appointments shortly after discharge. 

Taylor:

Our sweet princess is still our smiley and happy girl. She smiles with her whole body like she just can't contain her joy! She still loves to whisper but is starting to coo out loud a bit more. She's very quiet and rarely cries. Like Liam she is close to sitting and has also started solids. She's not a fan at all of rice cereal, and we have some great footage of that! 

Malachi:

Our youngest sweetheart has become more and more smiley in the last few weeks. He has huge smiles for us when we come in to his room and it melts our hearts the way he recognizes us. It makes it harder to leave (if that's possible!) now that he knows us. 

He has been very stable and has even come down on some ventilator settings recently again. We are SO thankful! His settings are considered safe for home, but we are still hoping to keep getting them lower before discharge. Once we go home, the "weaning" process will take a lot longer because he does not have 24/7 medical supervision. So every step forward is an extra bonus before home! 

We feel badly about all the practicing we have to do on our sweet boy between all the trach changes and using the rescusitator bag and switching him onto different equipment and circuits... but we know it's for his overall safety in coming home.

A few weeks ago Malachi failed his left ear hearing test for the second time so we will be following up with that. We are also following up on his kidney stones and gallstones before discharge. Eye follow ups will be after discharge. ENT will put a scope down his trach before discharge to check his trachea and top of his lungs. His heart has been monitored already with an echocardiogram this past week that looked improved. We are setting up an occupational therapist, speech therapist, and dietician for home. Half his equipment has been ordered for us to practice on but more will be coming in the next weeks. What else..? We are probably missing things but you get the picture. Lots to do and plan.

When the triplets were first born, the hospital life consumed us and rightly so. All of our energy and attention was dedicated to our triplets and their health. It was so overwhelming and mentally enormous that it was all we could handle (and even then, we couldn't handle it and broke down repeatedly). We could not even listen to the news or hear someone tell us about their average day. It was too much to handle. It was like our brains were "full". We let in some close family but we could not handle visitors or phone calls. Maybe it could be called "survival mode". When something so traumatic and life changing happens, it's all you can handle. 

But over time we have noticed that it has improved. Nathan was forced to overcome it quicker than Jodi because he had to go back to work. That was a hard transition that took multiple attempts before he was back to full time. For Jodi, the hospital life continued full time and still does, and so it is taking longer to be able to handle the normalcy of everyday life outside of the hospital and the triplets. Even things like small talk or hearing the news (there's a world outside the hospital!) or going to church are difficult to do mentally and emotionally, but we are slowly improving. 

It's a hard thing to explain, but talking to others we have found that others have experienced this too. When the church community and family and friends reached out to us, we felt encouraged and uplifted by all the texts and emails and cards, etc. But we also felt badly that we said "no" to so many visitors and did not answer many of the emails and texts and cards. We know that some of you have faithfully prayed for our family and still haven't met the triplets. (Part of that is for germ reasons, too, since we are very careful with having visitors over). So here's our attempt at an explanation as to why we were so closed off. And once again, a heartfelt thank you for all the prayers and the reaching out to us even when it wasn't reciprocated. It was SO appreciated and still is! 

God has truly blessed us with a loving support network that is even bigger than we could have imagined. We couldn't have done without. And it is our prayer too that this experience will be a blessing to us in the future so that we may know better how to support those who are going through a mentally overwhelming and life changing time.