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!
