I (Brandon) am writing the post tonight while Mandy sleeps :)
of you read Mandy's previous post sent this afternoon. We were in the
middle of moving from UNM to Presbyterian when she posted it. Mandy
asked for you to pray for Jude's transition to go well, for his
incision not to begin leaking CSF again, for heart surgery to be
scheduled soon and for a few other things.
excited and apprehensive about the move. It was a step forward in Jude's
overall progress and care. Being back at Presbyterian meant that
Jude's first heart surgery could be just around the corner. We were
also apprehensive about the move back to Pres. Jude began leaking CSF
for the first time ten days after his craniectomy. It had only been
three days with no leaks at UNM this time and we were making the trip.
the newborn transport team was taking Mandy and Jude from UNM to Pres, I
was hurrying Jude's toys, some food, and a few other things from our
room at UNM to our van. During that time by myself, I was asking the
Lord over and over again for Jude's incision to not leak. Our cute
little man is pretty fragile now and I knew that the trip could be hard
for him even though it's less than a two mile drive from one hospital to
I made it to Jude's new room at Pres
before the transport team. In a few moments Mandy, the transport team
and Jude rolled in. Our nurse asked us to go to the family waiting room
while they transitioned Jude.
Within ten minutes a
nurse came into the room to give us a quick update. Curious about
whether the CSF had leaked, we asked how his incision was doing. It was
hard to hear from her that, yes, his incision had leaked a significant
amount of CSF. The nurse continued to talk about other things related
to Jude. I eventually told her that we were having trouble hearing her
because we were stuck on the fact that his CSF had leaked again. We
were stunned and just sat there praying off and on until another nurse
came 20 minutes later to bring us to his room.
The rest of our evening consisted of:
1. Finding out that his head was wrapped tightly again with Coban to stop leaking.
Realizing that Jude looked puffier than when we left UNM. He had
actually gained another 1/5 pound of water weight during the transition.
3. Meeting with a doctor to find out what our next options were.
4. Jude getting another echocardiagram and an ultrasound for his abdomen.
the rest of the evening I wrestled with the things we had asked of God
that He did not give us, particularly the request of Jude's incision to
not leak in the transition. That was difficult. It's always difficult
when we ask for something specific and we do not get what we asked for.
What do we do when God says "No" to what we ask of Him? And how do I
respond this time?
What continued to come to mind for me
was Jesus' prayer on the last night before he was killed. Jesus
pleaded with his Father to "take this cup (of judgment) from me". He
asked his Father three separate times to let it pass. The request on
Jesus' part of being allowed to escape his imminent suffering and death
was followed by Jesus saying, "Yet not my will, but Your will be done."
wanted the will of his Father, which would lead to the salvation of
many, more than release from his suffering and subsequent death. Do I
want the will of the Father, however heart-breaking and confusing it may
be, more than anything else? Do I want His plans more than my plans?
Can I say, "I will continue to ask You, Lord, for what I want but, more
important than what I want, I will trust that You will choose to bring
about what is best even if it doesn't make sense to me right now." Even
as I write this I am torn between my desires for Jude and submitting to
my God who knows the end from the beginning. I am realizing that when God says, "No", just as was true of Jesus, His "No" is never the end of the story. He doesn't walk away but keeps saying, "Just wait on Me a little longer."
help me trust You. Help us all trust You. Help us to plead with you
for Jude's healing and at the same time plead for Your will to be done.
Teach us, Oh Lord. We need You so desperately!
we met with the doctor earlier this evening, we found that our journey
may take an unexpected turn. The challenge of Jude's neurological
surgeons being at UNM and his
cardiothoracic surgeon being at Pres have led the doctors to believe
that having all the surgeons in the same building will be best for his
future care. The trips back and forth between hospitals have been hard
on Jude's body as well. Therefore, it's possible that Jude will be
transferred to Denver Children's Hospital (or another hospital) in the
We will most likely find out tomorrow if
our insurance will allow for and pay for this transfer along with
whether the neurosurgeons and cardiothoracic surgeons in Denver are
willing to take Jude.
We'd love for you to pray for the following things...
1. That we would be able to go to Denver.
2. That Jude's swelling would decrease significantly.
That our other little guy, Caleb, would have an incredible 5th birthday
on Wednesday even though his mommy and daddy won't be there.
4. That Mandy would feel deeply refreshed tomorrow. I think she was asleep by 10pm!
5. That, more than anything else, we would ask God for His will to be done.
you so much for your incredible love shown to us. We are amazed
everyday that so many people are loving Jude and us through prayer.