4 Months Old Corrected

The triplets turned 7 months old on June 9th! Today on June 19th they are 4 months old corrected. This past week we looked back on some photos from when they were just born and were blown away by how far they have come! The LORD has truly worked miracles!

Liam:

Our sweet Liam has been growing and thriving these past few weeks. His head ultrasound results have come back as normal, for which we are thankful. He has another one coming up and continues to be monitored bi-weekly with head circumference measurements. He's still very smiley and starting to become more and more playful. He has been increasingly showing us that he cannot skip or delay nap time... or else a meltdown may occur! This is not the easiest issue to deal with considering all the appointments he gets taken to each week but hopefully these appointments will slow down soon. The Growth and Development team is currently monitoring Liam's neck strength, since he can just barely lift his head when laying on his belly. This means Liam has homework exercises every day.

On Friday all 3 babies got their routine vaccinations and we also found out that all the triplets qualify for the   government funded RSV needles next season (November to March). This is great news, because although technically only Malachi qualifies due to his health complications, the other triplets qualify in order to protect their brother (though they too are vulnerable). 

On that note, we would like to clarify Liam and Taylor's ongoing concerns or vulnerability because of some recent questions we have received from family and friends. Both triplets have chronic lung disease just like Malachi, although obviously not as severe. Chronic lung disease (CLD) is also called bronchopulmonary dysplasia (BPD). Taylor's is considered mild, Malachi's severe, and Liam's somewhere in between. Their lungs will grow bigger like every child's until the age of 8-11 years old. The new lung tissue will be healthy and so over the years they will have mostly healthy lungs. However, the lung tissue that is damaged now will NOT heal- it stays damaged. Because their lungs get bigger they should not "notice" the damaged tissue anymore. The severity of Malachi's chronic lung disease means that he most likely will notice it throughout his life. For example, he may have asthma or he unable to run for very long before getting winded. Until all of the triplets get bigger though, any sickness is a bigger deal for them. Any sickness will put stress on their body and make them work harder to breathe which means they could need to go back on oxygen or even breathing support. This is especially the case if they were to get a respiratory illness like a cold. For example, the Rhino virus (common cold in healthy persons) and pneumonia have been fatal to some kids with BPD or CLD. Thus, as parents we will need to be very careful for the next few years to protect our babies from sicknesses. This means lots of hand washing, "screening" our visitors to ensure they are healthy, and not taking our babies to public places where they might be exposed to sicknesses. Of course, there is the added layer that if one triplet gets sick, then the others are at higher risk. And if we as parents get sick, then we cannot visit Malachi in the hospital and will need to be extremely careful around Liam and Taylor. We hope that those around us can understand the caution that we need to take. 

1 Day Old vs. 7 Months Old

Taylor:

Our happy baby girl is still just that... happy. Her weight gain has been great these past few weeks, though her reflux is still an ongoing issue and is still being monitored. This past week, the endocrine team (essentially hormone team) said they didn't need to see Taylor again because she looks healthy from that perspective! The Growth and Development team are very pleased with Taylor's strength and development so far as well. 

1 Day Old vs. 7 Months Old

Malachi: 

Our youngest darling is growing still so quickly! This is a good sign because this means he is not burning all of his calories on trying to breathe. This past week he transitioned off of breast milk and on to formula but is still growing very well. Jodi was able to give Taylor 5 months supply of breast milk, Liam 6 months, and Malachi 7 months before it became too much to manage. 

From a respiratory perspective Malachi has not made any real improvements these past few weeks except that he has stayed on the same ventilator (breathing machine) settings! Essentially, that IS an improvement for Malachi. It seems we have finally found a "baseline" where he is able to breathe comfortably for long periods of time on his current settings on the NAVA mode. However, Malachi often has off days where he needs more support for a period of time and works harder to breathe. The first thing that the healthcare checks is whether or not he is getting sick- something that needs to be addressed quickly if that's the case. Often though, the off day can be for other reasons. One big culprit is that air gets trapped in the sick areas of lung and the gas exchange (oxygen in and carbon dioxide out) cannot happen effectively. Several times in the last few weeks Malachi has needed to be resuscitated again. Once was because too much condensation pooled in his breathing tubes and ended up starting to go down his trach and into his lungs. The natural reflex is to clamp down to protect the airway, which is what Malachi did. Malachi's lungs have low reserve, meaning that it takes a long time for him to catch his breath, or recover from any respiratory issues. He turns blue quickly and needs help quickly when things like this happen, because he goes down quickly. 

Malachi also is having issues with sores and redness around his trach and trach ties (which go around his neck like a collar to hold in the trach tube). We are trying different gauzes and dressings to help his poor little neck. 

On Thursday, we had another meeting with the healthcare team working with Malachi that week, including the neonatologist, the fellow working with her, a respiratory therapist, Malachi's nurse, the occupational therapist, social worker, and a representative from the complex care team (the team which will be following Malachi when we take him home). We know that Malachi will be coming home with his trach and on breathing  support. Once he is able to come off his breathing support, Malachi will still need his trach for a long while. This is something that he can be monitored and go back on breathing support if he gets sick or cannot handle it. We are told the trach will likely be in for a few years. 

Two big things came from our family meeting which were hard to hear. 1) The Neonatal Intensive Care Unit (NICU) has started the process of moving Malachi to the Pediatric Intensive Care Unit (PICU). This is because he is outgrowing the NICU in some ways. More importantly, the PICU needs to know Malachi well for when we come back to the hospital (when he gets sick or has any issues with his trach). It's going to be a hard move for us as parents... the NICU has become like a family in many ways to us over these past 7+ months. We know probably 99% of the staff and have come to form relationships with many of them. Further, the NICU staff have been stability for us during all these months of uncertainty and chaos. We have grown to feel okay about leaving our son every night because we know who is taking care of him. We love how nurses and doctors and respiratory therapists and other staff love Malachi and work hard to get smiles out of him... but deep down we know the move to the PICU will be good for Malachi. 2) The neonatologist expressed that she wouldn't be surprised to see Malachi still in the hospital on his first birthday... November 9th... We sort of suspected this bit of news but it still is so painful to hear it said out loud. November also means cold and flu season starting and if Malachi gets sick it would most likely cause setbacks and delay his stay even longer. It was difficult to hear, yet we also know that our God is all powerful and He is in control! So we pray hard for a miracle but also do our best to accept His Will for our Malachi and for our lives as Malachi's family. 

Malachi's New Piano Toy!

1 Day Old vs. 7 Months Old

Finally, it's a day late but Happy Father's Day to all the fathers out there, and especially all the hospital dads. We know it's so hard! 

To Nathan (it's Jodi here), thank you for everything you do. You get up early and go to work even when you're exhausted physically, mentally, emotionally... to provide for our family. You struggle to focus at work when Malachi is having a bad day and you wish you were with the family. You come home from work and we rush through supper so that one of us can go to Malachi in the hospital while the other feeds bottles, changes diapers, bathes little bodies, washes bottles... You make sure our bills are paid, you figure out what needs to be done to make our home ready for when Malachi comes home, you figure out assistance for children with severe disabilities insurance and employment insurance and the different healthcare companies and nursing companies and paperwork... You work at our house each Saturday to get it ready for Malachi. You don't sleep well because of all the worry and the stress. You love our triplets and you care for them better than any father could! Fatherhood is not what you expected and yet, you've stepped up to the plate and been a strong rock for our family. Happy Father's Day, my love!