Eli's long day!

Before I share an Eli update from today's Spina Bifida clinic, I want to share two quotes that have recently made a big impact on my life.

1) "God permits what he hates to achieve what he loves."  by Joni Eareckson Tada

2) "Some fears surface over and over again, especially fear of the future.  You tend to project yourself mentally into the next day, week, month, year, decade; and you visualize yourself coping badly in those times.  What you are seeing is a false image, because it doesn't include Me.  Those gloomy times that you imagine will not come to pass, since My presence will be with you at all times.

When a future-oriented worry assails you, capture it and disarm it by suffusing the Light of my Presence into that mental image.  Say to yourself, "Jesus will be with me then and there.  With His help, I can cope!"  Jesus Calling by Sarah Young


If the truth were told, I have been dreading today's date on the calendar since Eli was in the NICU.  The day he was discharged we met with the Spina Bifida Coordinator and several appointments were already scheduled for us.  Today was one of those.  For those not familiar with a "clinic" it is where you go in an exam room and all the doctors who are involved with your child's care round to you.  Its benefit is to help coordinate appointments so that you spend less time a the doctor's office.  In practicality this is great, but I find it to be somewhat overwhelming. 

Today following clinic Eli was set to have his yearly Urodynamics exam.  This is a test to check Kidney's, bladder, pressures, etc.  He will have it once a year for the next 7 years.  I have been worried about this test because he'd only had a kidney ultrasound at birth...you know and those kidney's are pretty important little organs!!!  It is that whole fear of the unknown thing....the standing there waiting for the big punch, the knock-out, the dreaded news.  Thankfully, the exam went really well.  Kev and I got to go into the procedure room with him.  The test det. that his kidneys looked good and that his bladder can empty completely on it's own.  There is no need at this point to catheterize or begin any meds or antibiotics.  He will have another kidney ultrasound in 6 months but for now we are good.  We were so thankful.

Earlier this morning prior to the Urodynamics test we saw the Neurosurgeon's NP.  Eli's little (somewhat large) head did another jump on the growth chart.  He had a MRI scheduled for next Thursday, but they decided to see it they could work him in today.  I have been dreading this MRI.  The thought of handing my baby over to some random nurse or tech for anesthesia is enough to cause my heart to flop.  It may not sound too bad until you go there in your mind with your own child....then it is just terrible. 

So we found out about the change in MRI this morning at 9:30 just as Eli was ready to eat his second meal of the day.  Then they told us the MRI wasn't until 2:00pm and that of course he couldn't eat until after it was over.  I knew it would be a very long day.  He was honestly such a trooper and cried some, but he handled it far better than I expected.  So, about 30 minutes before the MRI the NP came out and said that he would have to be admitted if they sedated him.  He had just met the 54 weeks from gestation requirement as of TODAY to not have to be admitted following sedation, but the anesthesiologist said he would still have to admit him(sorry if this is utterly confusing).  We found this out after waiting all day.  We opted to try our luck at an unsedated MRI and if not to sedate him as planned and just be admitted.  Eli was very tired at this point and had given up on eating...poor guy.  They let Kev go back with him and get this...they let him get on the table and go in the MRI with Eli.  Can you believe that?  No scary tech taking my baby off, no sedation, no needles, no overnight hospital stay.  They immediately sent the pics to the doc. to make sure they got just what they needed and they did.  We left quickly and I did my best to fill that little belly after about 10 hours without eating.

So, in talking with the Neuro NP this morning she said she would be really surprised if things were okay.  They saw the enough of a jump on the growth curve that they had been looking for and although they hoped things were stable, she said she was doubtful.  They even wanted to tentatively schedule us for surgery tomorrow!!  Kev and I said no, that even if it was needed we had to look at all of the options.  They were very sweet and accommodating. 

So about an hour after we returned home they called with the MRI results.  Kev took the call because I am not good with waiting for the news.  Good thing he was outside or I would have been saying, "what, huh, ask this, wait, are you sure," kinda thin... the whole time he was trying to get the information.  So as of now Eli's ventricles "look good."  Apparently he has extra axial fluid around the outside of the brain, but not in his ventricles.  This has caused the rising head circumference.  The hope is that his body will take care of it on it's own as he grows, if not he may still need a shunt for this, but at the time it is okay.  Talk about thankful!!!!  I feel like I experienced yet another miracle today.  I am thankful and still hopeful that we can avoid a shunt and so thankful that nothing needs to be done right here at Christmas time. 

What does God hate (not sure if God hates, but if he does I am sure it is the hurt, pain and suffering in the lives of His children), but he permits it because he loves (His glory being displayed on blogs, on facebook, through testimonies, and in the daily lives of weak and ordinary people.  Thank you Lord for getting us through this day.