1/5/10 update

We received some very good news today!  We went in for our follow up fetal echo at Children's, which went very well!  The hole in the heart has closed up some or may have even closed up all together.  The cardiologist was having a very difficult time seeing the hole and thought that it has either closed up some or it may have just been the position Gianna was in that was blocking their view.  He doesn't see any threat of a compression on her heart any more and does not see any leaks anywhere.  One of the valves is deformed and not normal, but he said that it doesn't pose any threat as it is still functioning properly.  So everything with the heart is looking very good!  We'll have another follow up echo in four to six weeks to make sure everything has stayed the same!  God is good!  Keep those prayers coming!

After our echo we took a tour of the NICU, which went very well.  I thought it would be difficult to see, but it really wasn't.  It was nice to see how comfortable the babies were and what a calm setting it is.  Each baby has their own little "plastic" case that they're in, but each family has brought in blankets, stuffed animals etc that really make it so personal.  They encourage you to bring in family pictures to put next to their beds so that the whole staff gets to know you.  I'm really happy to have seen the NICU and can put my mind at ease now.

After lunch we went over to BWH for an ultrasound and meeting with the doctor.  I have to honestly say I was not impressed with BWH.  The majority of the staff that we met with were short, curt, and just rude.  I didn't feel any empathy and just felt like a Medical Record number...not a person going through something very difficult.  Luckily we won't be spending a whole lot of time over there and Gianna will be over at Children's. 

During our ultrasound they found that Gianna's kidneys are slightly larger then they should be.  The doctor at Brigham told us that this could be associated with a syndrome called Beckwith-Wiedemman; "classified as an overgrowth syndrome, which means that affected infants are considerably larger than normal (macrosomia) and continue to grow and gain weight at an unusual rate during childhood. Growth begins to slow by about age 8, and adults with this condition are not unusually tall. In some children with Beckwith-Wiedemann syndrome, specific parts of the body may grow abnormally large, leading to an asymmetric or uneven appearance. This unusual growth pattern is known as hemihyperplasia."

I didn't get many of my questions answered about this syndrome with the doctor at Brigham and felt very upset leaving their office.  We had to go back to Children's before we left to pick up some paperwork and drop off the disk with BWH ultrasound.  They are so wonderful over there and Linda the Nurse Practitioner that has been dealing with us sat us down to answer our questions and even got Dr. Buckmiller in with us to explain things to put us at ease.  She reassured us that she did not think Gianna has this syndrome as it is more common with a smaller omphalocele and Gianna has a rather large one.  She also said that she hasn't seen any of the more common features that these babies with this syndrome have...protruding tongue, pushed back jaw etc.  She said our chances that Gianna has this syndrome are extremely rare.  Phew!  She is so nice and just takes so much time to explain everything to us in terms we can understand.  We weren't even supposed to meet with her but she came in just to put us at ease and explain things.  We're so very pleased with Children's Hospital!

We finally wrapped up down in Boston around 4pm and were on our way home.  Didn't even hit much traffic which was very nice!  We were home by 5pm and are now sitting at home feeling very blessed that things went so well and thanking God for taking such good care of us!

We weren't able to get any pictures today because miss Gianna is in a breech position and would not show us her pretty little profile!  We'll be meeting with Childrens and BWH in four to six weeks for another fetal echo, meeting with Dr. Buckmiller, ultrasound with BWH and a meeting with BWH doctor again.  This will probably be scheduled around February 16th. 

The doctor at BWH wants to tentatively schedule our Csection for March 31...that puts us at 39weeks.  I think Dr. Buckmiller would like to have us come in a little sooner, more like 37weeks so we'll see how that pans out.  They said not to settle on that date as it can change as we get closer.  At least it gives us a ball park figure.

I'm sure I've forgotten to mention something, but at least this keeps everyone pretty much up to date!

Thank you again for all the support and prayers...we appreciate them so much!

After a long long day I'm going to go relax with my hubby!
Good night and Until next time....

K.E.M

"Pray, hope and don't worry"-St. Padre Pio