So Haven had a really good night last night from a stability standpoint.  Fluid is still a bit of a problem.  Yesterday she was still about 200 mL more in than out.  She actually had a good day today as well (from a stability standpoint).  So far today she is just a few mL’s negative; she’s been floating right around even most of the day.  We took another field trip today.  On our way down to the kidney scan, we made a pit stop for a CAT scan of her brain as a follow up to yesterday’s MRI results.  Haven did a good job through all of that despite the fact that traveling in her condition can be very stressful on her. 

The kidney scan results are not in yet, but we have results for the brain scan and MRI and the abdominal MRI.  Keep in mind that all three of these scans look at structure not necessarily function; however, sometimes function can be determined by structure (sometimes not).  So the scans of Haven’s head showed us that her brain is smaller than it should be and that there is a collection of fluid between her skull and her brain on her right front side.  

Since she has been so sick and in the hospital so long it is not surprising to anyone to see that her brain is smaller than normal.  There are main things that influence brain growth:  nutrition and brain usage/stimulation.  Nutrition has obviously always been far less than ideal, and given all of the limitations she has had that most 4-month-old babies do not have, usage and stimulation has not been optimal either.  We are thankful that we attmept to stimulate her as much as we have otherwise her brain would be much smaller than it already is.  At this stage in the game, her prognosis from a neurological standpoint covers a very broad range of possibilities covering everything from mild learning disabilities to severe mental retardation.  Only time will tell.

As far as the fluid in her skull is concerned, it appears to be a mixture of cranial fluid and blood.  The neurologists do not believe that it is fresh or that, at this time, it is increasing.  Because of that, they do not believe that attempting to remove it at this time (or maybe even ever) is necessary.  They do believe that it is very important to continue monitoring it with tests such as CAT scans and MRI’s to keep an eye on it in case it does change.  The fluid could be there for a number of reasons:  many children collect fluid in the skull from the birthing process and their brain eventually overcomes it as it grows; it is quite possible that fluid is there as a result of being on the ECMO support system after her initial Norwood procedure; it could be due to the fact that her brain is underdeveloped — in your skull there will be fluid where brain matter isn’t, so if her brain is not growing properly on one side fluid will be there in its stead.  It’s possible that the right side of her brain will grow and overcome the fluid.  It’s possible the fluid will always remain there.  It’s possible that the fluid may increase and need to be surgically removed.  Again, it’s hard to say at this point, but it is data.

The abdominal MRI showed us a couple of things.  Firstly, it showed us that she has a large amount of ascites (a build up of abdominal fluid usually caused by liver disease) built up on one side of her belly.  This is one reason why her belly is so distended (large and firm).  Secondly, the MRI showed us that her liver is extremely large and dark with apparent iron deposits.  The iron deposits are probably there because of the many blood transfusions she has had.  Being large and dark means her liver is sick; probably sick because of a metobolic disorder that she has that hampers her ability to process  certain components of her nutrition (fats, proteins, etc.) properly.  We are meeting with the metabolic doctor tomorrow to discuss this issue further.  Other than the fact that her liver is indeed sick, we won’t have any further details regarding her liver until after our meeting tomorrow.     

The genetics test is still out and the results are due back early next week.  The only other two tests that were discussed were the liver and muscle biopsies.  After talking with the doctors, we decided to hold off on these two rather invasive procedures because they said though more specific data could be gained in terms of a specific diagnosis, any information they obtained from them would not alter any treatment that Haven would receive.  The risks involved far outweigh the benefits at this time, but it is certainly something to keep in mind for the future.

So, what we’ve really taken away from all of this data is that other than some specific information about what exactly is in her skull and abdomen, any treatment plans will not be affected.  We presume that the kidney scan findings will yield similar types of results:  “yes, the kidneys aren’t working properly, but we’re already doing everything we can for them.”  We may have some more information regarding her underlying genetic condition sometime soon which may or may not shed some light on the subject.  Bottom line is that Haven is a very sick little baby, and we’re doing everything we can to try and make her better.  That’s going to take a good deal of time. 

As always, thank you so much for your prayers and encouragement.  As the site’s theme verse says, “God is our portion forever”.  That is so true.  We would like to leave you today with the following passage.  The bible says that the Apostle Paul is our pattern for believers today (1 Timothy 1:16), and he instructs us to glory in all things for our hope is in Christ not in things of this world:  “…for I have learned, in whatsoever state I am, therewith to be content.  I know both how to be abased, and I know how to abound:  every where and in all things I am instructed both to be full and to be hungry, both to abound and to suffer need.  I can do all things through Christ whcih strengtheneth me.”  Philippians 4:11-13