nothing new

They continue to tap Morgan's head daily and will skip tomorrow (Sunday) and see how Monday's ultrasound looks.

First Tap

The neurosurgery nurse came in this morning and removed the bandages from Morgan's head- it actually looked a little better than expected.  Poor girl already had her first hair cut/shave (which they saved for us in a bag). She showed me how they insert the needle into the reservoir (just a bump under the skin with stitches around it) and pulled out the fluid.  They plan to tap this daily until they get to a "normal" level of CSF in the ventricles.  They cannot remove all of the excess fluid at once because the ventricles could collapse causing the brain to pull away from the skull.  The hope is that after we get to this baseline point her head may start to drain some on its own because as they tap the CSF it removes much of the blood clotting in the fluid which potentially could be what is "clogging" it.
The nurse also showed me how her soft spot became soft after they tapped- sort of felt like a water balloon- which we have never felt before since the fluid build up made her soft spot feel hard.  She also showed us how her soft spot was several cm's from the edges of her skull bones and explained how it should look in a non-hydrocephalic baby.  This is the first time I realized how enlarged Morgan's head really is- its hard to notice since it grew to this point so slowly and the fluid build up just caused it to continue expanding.

Recovery from Reservoir

The day after her surgery Morgan is recovering well.  She only received one dose of morphine early morning and then they were able to take out the vent later that morning and put her back on CPAP(she was fighting the vent with her breaths which is a good thing).  The major downside to requiring surgery (other than the obvious need for a reservoir to drain the CSF) is that it sets her back from the progress she has made with her breathing and eating.  They had to have the CPAP set higher and feedings started again later that evening but back to 2ml per hour and have to build up to 6 ml again which is where she was at prior to surgery.  It will likely take a couple of days for her to be back to where she was. 

Since some fluid was taken out of her head during surgery they will not tap the reservoir today. 

Surgery Day

Started the day early to prepare. 8am they had to stop Morgan's feedings and switch to clear liquids/saline.  She had to receive another blood transfusion this morning also before surgery since she was borderline anemic - I really don't like this unless absolutely necessary but they assured me it was.  The Neurosurgeon came to speak to Pat and I - he explained the procedure, how it will help and is required now before the fluid build up causes further brain damage.  We signed all of the forms and he was on his way.

Waiting for surgery for several hours is the worst.  To pass the time away we each did kangaroo cares (held her skin to skin) with Morgan since we probably wouldn't be able to hold her after surgery for a while.  The anesthesiologist came in to explain how they would re-intubate her and the localized anesthesia she would be given.  Depending on how she did they may extubate before they bring her back up from recovery or might have to leave it in for a while until she is breathing again on her own.  Then I just sat by her isolette and talked to her "coaching" her on how to breathe strong when she is done & hopefully not require heavy pain medications and sedation afterward so she can start eating again soon!

OK I lied, waiting for surgery to start isn't the worst, waiting for her during surgery is!  The procedure itself I believe took only about a half hour and we waited about 2 hrs from when she went down to when she was brought back up from recovery to her NICU room. The surgeon came out to the surgery waiting room after it was completed and let us know it went "very well".  Whew, what a relief.  The rest of the evening she was on Tylenol & morphine and slept peacefully.  She was still intubated and IV in so looking very fragile again but doing great. 

I realized this evening what a sense of relief I am feeling.  I think I have worried and hoped and prayed so much for the hydrocephalus to resolve on its own and now that the reservoir surgery is done we can accept this as a solution and move on to focus on her growth to get her healthy and home. 

Reservoir Surgery Scheduled

Met with the neurosurgeon this morning and asked them more questions about the procedure, how it works, where they will place it, etc.  I requested they complete another ultrasound before we proceed with it.  This afternoon we received the results back and the fluid build up didn't look worse but it definitely wasn't better either.  I was told that sometimes the Decadron (a steroid they gave her an extra dose of to mature her lungs faster to prepare for surgery & intubation) can reduce the swelling and that could be why it is not getting worse.  Surgery is scheduled for this Wednesday afternoon at 2:45pm :(

More fluid and swelling

ugh...another head ultrasound today which showed further fluid build up and swelling in her head.  My heart drops as the doctor informs me.  Was a long wait this afternoon to see what the neurosurgery team will say.

Peter came in and informed me that the surgeon was out right now but we should go ahead and put her on the surgery schedule for next week- it is unlikely it will resolve and they will need to relieve the pressure of the fluid build up.  The plan is to wait until next Monday to complete another ultrasound and Dr Nagib (neurosurgeon) can review results again and determine if this is the best approach. He drew us a picture of what the reservoir looks like and how it goes into her ventricles, etc. and answered a couple of our questions.   The procedure to place this involves drilling a small hole to place a thin tube through the skull into the ventricles which leads up to a reservoir (looks like a half of a small white hollow ball) which sits right underneath the skin on her head.  They would then be able to tap into this reservoir with a needle to draw out excess fluid (CSF).  I find that I feel like a zombie listening to him and I think still a bit in shock so didn't come up with more questions until later of course.

We are urging the doctors to wait as long as possible before they complete surgery to place the reservoir.  Time to let God heal her and make her bigger and stronger if surgery is required (weigh only 2 lbs today) but understand it is not a good idea to wait too long because the pressure on the brain can cause further damage. 

Follow up ultrasound

Tough day again.  Follow up head ultrasound was this morning and the doctor came in this afternoon to let us know that the results were not good- the fluid in her head was building up and causing her head to swell so the neonatologist has referred us to neurology team.  The area where the bleed occurred in the brain matter is already starting to look cystic (which is expected as it heals) which she said is somewhat unusual to happen so quickly (usually they see this taking about a month) but really doesn't mean much - other than somehow either you heal quickly or the bleed occurred prior to birth (not likely). 

Later in the afternoon I met with Peter from the neurosurgical team.  He did not seem so optimistic which was very hard to hear.  He confirmed the bleeding in the brain occurred in the area that would control motor skills and to expect the brain injury will likely result in some motor function disabilities and possibly cognitive as well.  This is so devastating to listen to again.

He also explained that if the build up of fluid does not resolve soon they would have to place the temporary reservoir (Rickham reservoir) via surgery and they would tap fluid off of this until either your head starts draining or you are big enough to place a permanent shunt.  In general this is difficult to take in but might be necessary.  It is also unfortunate because surgery will require them to stop feeding you for a while, re-intubate, etc. and sometimes it is difficult for such small babies to recover from- typically quite a set back as it is explained to us.

Will keep hoping and praying...