Day 208

It's been two weeks since we have updated our blog and it feels like a lot has happened since. Each day feels busy, as if we are always going and going and going. Each day we bounce back and forth between the hospital and the Ronald McDonald House, have someone come to watch Liam and Taylor for a bit almost every day, often have appointments with Liam or Taylor, meetings with the doctors and healthcare team, have training sessions for taking Malachi home eventually on his trach and ventilator... not to mention the many bottles and dirty diapers and piles of laundry and Nathan's job...  triplets are busy! It also feels busy because babies change so quickly. We have been noticing so many new things with each of our babies and it is beautiful, exciting, and also bittersweet to see them growing and changing so quickly.

Our first ever family photo after 201 Days

Nathan finally getting to hold all 3 for the first time

Liam Josiah:
Our adorable oldest has been growing and eating like crazy. Liam is 13lbs and 2oz, Taylor is 12lbs and 4oz, and Malachi is 13lbs and 3oz! This past week he had a head ultrasound done to check the fluid levels around brain and his brain in general, but we haven't yet received the results. This coming Thursday we will know. In the meantime he still has his head measured weekly. Our sweet boy has really started to find his voice and loves to coo and "talk" to people. It's so cute! It also seems he has a bit of a temper starting to show... which isn't as cute! He can get extremely upset in a very short period of time. But overall, our little man is easygoing, happy, and smiley.
Both Taylor and Liam have both started a course of antibiotics this past week after we received a phonecall from Public Health that they may have been exposed to Whooping Cough. This is because there was a child staying at the Ronald McDonald House who was not vaccinated and ended up getting the Whooping Cough while staying at the House. Public Health recommended that we immediately put our babies on a strong antibiotic to prevent them. Our pediatrician agreed and gave us a prescription within the hour. We obviously do not wish to have our babies on strong antibiotics (which also have strong side effects like diarrhea) especially when they are not sick, but realize the vulnerability of our little ones. This also means that Liam and Taylor are not allowed to visit Malachi for a period of time. This is also disappointing in light of the fact that we were finally able to bring them in now that Malachi had been finally cleared of his pneumonia.

Who, me?

All dressed up for Mommy's birthday

Telling us a story

Taylor Joy:
Our smallest sweetheart is still being closely monitored for growth, especially since she is not very enthusiastic about taking a bottle. Her reflux medications seem to be helping with her projectile vomiting but it is still often a bit of a process getting her to take enough of her bottle. Yet, she is still our happy girl who smiles anytime, anywhere, to anyone! She likes to coo in a whisper voice and make bubbles in the back of her throat, but doesn't coo with her voice very often. She also sucks on her fingers, while Liam prefers his thumb.
This past week she learned to roll from her belly to her back and we are so proud! It's funny how babies can give their parents such excitement and pride over the smallest things. You would think she graduated college by the way we felt. And yet, each time they reach a milestone it is a blessing. This is especially in light of the fact that we don't know what the future holds for each of our precious triplets. We know they will have many challenges developmentally, but we don't know to what extent for each one... only time will tell. We also often reflect on how blessed we are that they are even with us today! And so we celebrate everything!

Could this smile get any bigger?

Napping in our stroller after an afternoon of appointments

Malachi John:
Our youngest baby boy... where do we even start the update on him? The situation changes so quickly and so often. On Thursday May 25th we almost lost our sweet boy yet again. This time we don't really know why, although there are a few theories. Nathan had just visited Malachi and was walking to the Ronald McDonald House to switch with Jodi when it happened. He suddenly dropped his oxygen saturations and heart rate to the point where the healthcare team started to resuscitate him with a bag (this is like mouth to mouth except it is done through the trach stoma/hole and the breaths are given with a self-inflating and oxygen-rich bag instead of a mouth). This bag has been used many many times on Malachi, but this time he also needed chest compressions to bring his heart rate back up. After a minute and a half he came back up after which the team started to do extensive testing to determine why it happened. He was immediately started on IV antibiotics because of a suspected infection, but after a few days it was stopped when all the tests came back negative. The ENT (ear nose and throat) specialists used a scope to check if there were chunks of mucous or secretions in his lungs that may have caused a blockage or if his airway was collapsing. Both looked great. A chest x-ray was done to check for pneumonia, fluid, or collapse. The x-ray showed some collapse, which was likely from during or after the incident itself. And so all the tests to show why it happened came back negative. The theory at this point is that there was a large mucous plug that was dislodged by the chest compressions and CPR. It scares us so badly to think that this could happen at home. After the incident, Malachi needed higher oxygen (around 90% instead of 35%) and his settings also needed to go higher. (If you are interested, he is on a PEEP of 14 and a NAVA level of 0.6, with his PIP fluctuating between the high 30s and into the 40s. The NAVA ventilation mode does not set a PIP or PC above PEEP because it is dependent on the electrical signals of the diaphragm). Our Malachi just keeps creeping up on his settings, which is obviously not what is supposed to be happening. The doctors tell us that they are still trying to work out a baseline for our little guy to breathe comfortably. This has been a struggle since Day 1.
It has also now been confirmed that Malachi has kidney stones, gall stones, and nephrocalcinosis (calcium deposits in the kidney). These will all need to be monitored closely through bloodwork and ultrasounds. We need to watch to see if he seems to be in pain, starts peeing blood, etc. so that the team will determine if something needs to be done.
On a brighter note, Malachi is starting to smile more and more easily for us which melts our hearts every time. All the stress and anxiety and heartache around our sweet boy melts away for a little bit when he smiles. He is still not allowed to sit up (assisted of course, or in his MamaRoo) because it makes him work too hard to breathe. We are constantly working with the Occupational Therapist to find ways to let him explore and develop, since he does not have the opportunities that healthy babies have. He likes hitting and looking at his hanging monkey toy and some other toys that we hang in front of him. He also loves to listen to music.

Malachi in his MamaRoo chair

He can't make noise but we think he wants to tell us a story too

Some days are easier but others are harder as physical and emotional exhaustion hits us. Some days we think that "we will get through this", but then the fragility of life hits us hard again... whether because Malachi is having a bad day or because of what we see in the NICU or because we are just too tired. We continue to covet your prayers, especially for our Malachi. We know the road is still long before us but we know too that our Heavenly Father continues to care for us and our precious three miracles!