A Big Week!
"Behold, I have engraved you on the palms of my hands; your walls are continually before me." - Isaiah 49:16
I don’t
think I deeply appreciated Christ being our advocate before Veya was born. For eight months (almost nine now)
I’ve had someone’s name or a team in my notes to call or visit with daily to
get updates and strategize what the next best steps in her care are.
Advocating
is the relentless application of unconditional love. It requires a dedicated mind and an
unwavering selfless heart. Most importantly, it requires you to fully know
someone – their passions, dreams, fears and challenges.
I didn’t
fully recognize how much effort Christ puts into getting to know me and
relentlessly fighting for me. I did not
appreciate the scars the Savior kept in the ways I do now. If I had a chance to wipe away my internal
scars that come from this experience, or Veya’s physical chest scar from her
heart repair, I would never. The scars
we both carry…I like to see them now as evidence of the love, determination,
fight, willingness and strength that God gave to us. I’m grateful for a Savior who keeps His scars
for me. Isaiah 49:16
When I read
“my burden is light and my yoke is easy” it sits with me differently. Christ has the hardest job ever. He built the world, suffered for our sins,
and still actively comes to our aid. “Light” and “easy” don’t sound like the
best words to describe our Savior's role. Walking through NICU, CCU, PICU etc.
etc. were undoubtedly the most challenging months on this journey. However, I
would describe the burden as “light” and “easy”.
Yes, I was
pushed to my limits. Most days I felt
like I couldn’t do it. Yes there was a
lot of suffering and heart ache. A lot. Yes, I would do it again. My love (and Jer’s love because I’m speaking
for both of us here) for our daughter Veya is SO much greater than our desire
to avoid discomfort and personal pain.
I imagine our Savoir feels a similar way. His role isn’t one of comfort and ease, but His love for us so clearly outweighs all of the negatives – so much so that His burden is light and His yoke is easy. Most of all both Jeremy and I are grateful to love the way Jesus does (of course though we are not without sin, and our Savior is) We have four beautiful children that we love so dearly, we wouldn’t just die for them, we would live for them too. Our Savior loves us so much He didn’t just die for us, He lives for us. Every day He is actively there for you and for me protecting, preparing and providing.
And this
week He has continued to provide for Veya and has even prepared a way for her! In
more ways than one! Veya was reintubated
and underwent another MRCP procedure earlier last week which confirmed that the
large gallstone has indeed passed which we are so thankful for!
We also met
with a new team called the Respirology Team. Oddly enough they have just been brought on
board to assess Veya’s lungs because she has been stuck on the same settings
with her heated high flow for the last number of weeks, unable to wean any
further on her O2 support. They want to
repeat a CT scan because her last one was done in February which was prior to
her having gone through pneumonia, severe pulmonary hypertension and pulmonary hemorrhaging. They want to compare the imaging to see if
there is any permanent lung damage or lung disease. They will also put Veya
through a sleep study to assess her oxygen needs for at night. It’s hard to say yet what her O2 needs will
be for when she goes home. If she
requires higher pressures from a CPAP or BIPAP machine, then we will have to
have a night nurse with Veya to make sure she doesn’t aspirate during her sleep.
However, in
typical Veya fashion…. she heard the plans they had for her and was like “watch
this everyone” and she successfully weaned to low flow oxygen the following day
and she has been doing great! To think
that the last time Veya was on such minimal O2 needs like this was when she was
two weeks old and tomorrow, she will hit her one-week mark of being on the low
flow! We are so thrilled and thankful
for this big step forward and we pray that the sleep study can show her lungs
strong enough to be able to continue with the low flow during the evenings so that
it can make the transition to home easier.
We also have connected with the Sick Kids Down Syndrome Clinic here and their Abilities Team. They are currently carrying out their assessments on Veya and seeing where they can best support her and help us as a family get our names onto some wait lists for the therapies she will need once she’s home that are more local to us. They are also going to request that Veya has another eye and hearing test done while she is here. From their bedside assessment that said that Veya, even though almost nine months old, is more developmentally at that of a three-month-old, which they aren’t concerned about given all this time she’s been in hospital.
Aside from celebrating the big win with Veya’s wean to low flow this week, we are also happy to share that Veya is finally going for her long-awaited liver biopsy…which is happening right now as I type this! They were able to line up all the necessary teams quicker than they anticipated! Please pray with us that this long-awaited biopsy may provide the answers that her team needs in carrying out the best ongoing care for her liver. Once the biopsy is completed and Veya shows stability, the teams will discuss with us when they will plan for her G-Tube surgery.
We want to
express our thankfulness to all our family and friends again! The amount of love and support we have
received over the last eight months and continue to receive is beyond
words. We have so many amazing people
who are invested in our family who are praying constantly and pleading with God
for the best possible outcome for our daughter’s health complexities. We feel so carried and strengthened by your
unwavering love and prayers.
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