Wednesday, May 7, 2014

Update from Monday

Many of you have been asking about Monday's meeting, and so now that the kids are back with grandparents, I (Alan) suppose I should update.

It's a little hard to update from the meeting, so I'll kind of describe the format and be a bit vague on the details if that is okay.  The meeting was about 10 minutes of describing Chloe's current condition and path forward if she continues to be stable (which is really the best case scenario at this point).  The rest of the 2 or so hours was a discussion of what if scenarios.  Obviously some of these what if scenarios were much harder to hear than the others.

Let me start with her current condition.  At this point, they have determined that there is one kidney in the wrong place sitting on top of her bladder.  That said, the one kidney is functioning and picking up in function as she goes.  This is a good sign and is encouraging for the future.  That said, it is also entirely possible that there is another kidney somewhere else (after all, this one is in the wrong place).  At this point, the doctors don't really want to subject Chloe to any more tests, and the nephrologists and cardiologists are cautiously optimistic proceeding with future surgeries with one kidney.  The neonatologist did say that if at any point they need to perform another MRI, she will have them scan the whole body so that we can get a full picture.

Her heart is balancing well on its own, which is a wonderful thing.  There's a delicate balance between too much blood to the lungs and not enough to the body, or visa versa.  If there is too much blood to the lungs, they will need to perform a restricting surgery, called a pulminary artery band.  If there is not enough blood to the lungs, she will need a BT shunt.  Of the two, the pulminary artery banding is a less major of a surgery, but our prayer is that her blood would continue to be balanced.  The goal is to get her to 6 months, when they will perform the first of two necessary surgeries, the Glenn procedure.

To perform the Glenn procedure, her kidney needs to be strong enough to withstand heart surgery.  Also, her airway would need to be intubated (ventilated) to perform any surgery, and with her differences-the way her neck is formed, that procedure in itself would be extremely high risk.  They would likely need to use fiber optics any time they would need to intubate her. Please be in prayer that if emergency intubation would be needed, that it would be successful as we've been told there's a chance it would not work based on how she's formed.

The major focus of this meeting was a discussion of kidney and heart and the interaction between the two.  The what if scenarios were frankly exhausting to hear, and I won't go through them all.

Chloe's other differences were quite a bit less discussion, as each of them will require intervention in the future, but are not life limiting differences.  Not remembering what I've talked about and not talked about, I'll try to just walk through them one by one so I don't miss anything.

Chloe has two club feet.  One of her feet can be corrected with physical therapy, and so the PT folks are visiting her once every two weeks to work on range of motion.  The other foot will need a cast at some point in the next month or so (preferably after she's grown).

Chloe failed her initial hearing test, but this isn't a final test, and many babies fail their initial hearing test.

Chloe has differences in each of her eyes.  Her left eye has a smaller optic nerve.  We're not really sure what this will mean for Chloe, and the opthamologists were not at the meeting Monday.  Her right eye has more differences, somewhat akin to a severe cataract.  She will need surgery at some point to correct this difference.

Chloe has both a cleft lip and a cleft palette.  Typically they would perform a surgery at 6 months to fix the lip, and then another 2 after a year to fix the palette.  The Glenn heart surgery will trump this surgery, so the clefting schedule will all get pushed back a bit.  Because of this clefting, before Chloe can go home, she will need surgery to put in a G-tube to feed her.

If you were counting, you'll note that in the best case scenario, Chloe has a lot of surgeries in her first year, and the bigger she is, the better for each and every one of those surgeries.  This means that our first and biggest prayer concern is that she would grow.  To get there, her upcoming milestones will be to get off of the oxygen cannula (they took out the cannula today, so pray that her CO2 levels would be normal tomorrow morning so that she can stay off of it).  Then, they will take her out of her "box" and put her in a crib when she proves she can regulate her body temperature on her own (the purpose of the box is to regulate her temperature).  Her weight will fluctuate for one more week as her kidney gets used to its function, and as they increase her feedings (in the past 2 days, they have more than doubled the amount she gets with each feeding), and then starting the 12th, they will want her to gain 20-30 grams (a little less than an ounce) each day.  To put the feeding tube in, they want her to be 6 or 7 pounds (or even a little more).   This means that our timetable revolves around her weight gain and continued stability.

I asked the dreaded question in the meeting about how long the doctor thought she might be in the NICU before she can go home.  Putting up all kinds of reminders about setbacks and things that can change the schedule, the doctor thought we might be thinking about going home in the latter part of June.  That said, do you all remember when the plan was to have Chloe on Monday, the 28th....?

I have said through this that apparently God is really focused on teaching us that we really are not in control of this (or any) situation, and so we're trying to not form expectations at this point, but simply trust God for the timing.  He has not been shocked by anything thus far.  When we were told in December that our baby had major deformities, and would die any day, God knew that we would be sitting here in the NICU holding her in May.  When the doctor told us in February that we weren't going to even talk about delivery because the likelihood was so high that she would be stillborn, the Lord knew that she would be delivered safely at 3:08 p.m. on April 25th.

Jodie and I both have been doing a lot of meditating on Psalm 139 over these days, and I am particularly struck by verses 13-16, "For you formed my inward parts (the Hebrew word for kidneys); you knitted me together in my mother's womb.  I praise you, for I am fearfully and wonderfully made.  Wonderful are your works; my soul knows it very well.  My frame was not hidden from you, when I was being made in secret, intricately woven in the depths of the earth.  Your eyes saw my unformed substance; in your book were written, every one of them, the days that were formed for me, when as yet there was none of them."

Over the last couple of days, we had our oldest two, Isaac and Abi here with us to meet "Baby Chloe."  What amazing ways God has blessed us.  What a blessing you all have been.  We continue to be told by people that we have never met before that they are praying for us and for our little one.  Some might think that you all are strangers, but each one of you are family, brothers and sisters together in the Body of Christ, and for that we are blessed beyond words.


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