Children's Hospital Update

Sorry it's taken so long for the update!  It's been really hectic!

So things at Children's went really well.  We started the morning off by talking with one of the nurse practitioners.  She went over some anatomy and explained the plan for the day and who we'd be meeting with.  She was so nice and made us feel so comfortable.  After waiting for quite a bit we finally got in to our ultrasound.  We got some really good pictures of Gianna that I will attach to this so you all can see.  The tech wanted to know if we wanted some 3D pictures...we said sure!  Its so incredible to see her growing so much every week!  They had an intern social worker and intern genetic counselor follow us all day to make sure we knew where we were going and made sure we got our questions answered.  We just felt very well taken care of.

The ultrasound got interrupted and we got taken right down to the MRI.  Children's has such a neat set up!  The MRI machine was done up in a jungle theme and they had a soundtrack playing with jungle sounds...it was great for little kids!  I was so tired from getting up early to get into Boston that morning that I fell asleep through the MRI!  So I can't tell you how that experience really was lol...but the MRI came back beautiful and we got another really good image of our little Gianna! 

After the MRI both Dan and I were starving!  We went down to the cafeteria, which was a huge and busy place!  It was really interesting to sit there and eat watching OR doctors coming in and out all garbed up trying to get a quick bite to eat.  I can't imagine eating after the stuff they do and see!

It wasn't long before it was 1pm and time to go get our fetal echo.  The tech was great and had a really good sense of humor!  Miss Gianna had a mind of her own and tried to be very modest and kept her hand and arm over her heart for quite a bit.  She cooperated enough with us in order to give Dr. Obrien some good pictures.  When Dr. Obrien came in she took some more pictures and then met with us afterwards for a mini consultation as to what was going on with Gianna's heart.

Gianna has the hole in her heart (VSD) which is not small but not large.  Hopefully it will heal on its own.  Dr. Obrien does NOT suspect Tetrology of Fallot which is wonderful!  She thinks the reason that the other echo showed possible signs for Tetrology of Fallot is a minor chest wall defect Gianna has.  The chest wall "caves" a little over the right side of her heart which is putting a minor compression on that side.  She would like to do another fetal echo in three weeks to make sure the heart is still growing properly due to the compression.  Apparently it is common for babies with omphaloceles to have this kind of a defect.  The other thing to keep an eye on is a small leak in one of the valves.  She suspects the leak is from the hole which is right next to it.  She didn't seem too concerned about that.  So there are several minor things to keep an eye on from here on out.  In about three weeks we will be going back in for a follow up echo.  I'll be setting that up tomorrow.

After the fetal echo we got to meet with Dr. Terry Buchmiller, the pediatric surgeon.  What a wonderful doctor!  She did such an amazing job explaining everything that was going to be taking place and the course of action.  We will be having a C-section scheduled around 37-38 weeks.  I will be delivering at Brigham and Women's at which our whole intensive care team from Children's will come over and be present at the delivery as well as the Brigham team.  After the baby is delivered they will do a head to toe check...make sure she is stabilized etc.  We'll have about an hour with Gianna before she is taken over to Children's which is connected to Brigham and Women's via bridge.  From that point on they will stabilize her in the ICU making sure her heart, lungs etc are stable.  This babies run a high risk for heart problems and lung issues because their chest size and lung capacity are smaller than normal babies.  They will put a feeding tube in if need be and put her on a ventilator if need be.  Dan will be able to go over and get pictures etc. and I will be able to go over once I'm recovering. 

Dr. Buchmiller said we will be doing the "Paint and Wait" method.  They will be painting the omphalocele with a diluted beta dine solution to keep it moist and clean.  It is already sterile because it is in its own sterile sac.  They will make a prostetic cast which will stabilize the omphalocele preventing any blood vessels to get "kinked" which could later cause liver damage etc.  They chose to do the paint and wait method because the omphalocele is large.  She didn't classify it as a Giant omphalocele but it is large.  Since it is large they can't do surgery to put everything back in because there isn't enough room.  It would cause her to have breathing problems etc. This is a better more natural approach allowing the body to grow and allow room for the omphalocele to go naturally back into place.  There will be some compression to ease it back in.  It is a much longer process obviously and Gianna will be in the hospital they said most likely a min. of 3-4 months. Could be longer could be less...it'll all depend on what she comes out like and how she handles things.  There's no rushing this baby! I can't say it was any surprise to hear all of this.  This is exactly what I was expecting them to say.  Dr. Buchmiller sounds extremely caring and very knowledgeable having had done many of these surgeries previously. 

We are very hopeful!  It is going to be an incredibly long road but we will get there! It was so overwhelming that night on the way home and we were mentally exhausted but we both know that when the time comes we'll just adapt and it'll be like second nature.  We'll most likely stay down there in the special housing they offer a couple blocks down the road for a little bit and then get used to the commute back and forth into Boston. 

So the next step is for me to get established and registered with Brigham and become one of their high risk OB patients.  We will then do what they tell us go down there for ultrasounds etc. and we'll probably meet with Dr. Buchmiller at 28 weeks for a final visit.  They all work very closely together which is very comforting.

I'm sure that I've forgotten many questions you all have so please feel free to ask!  I'll get the pictures put up tomorrow...too tired to scan and upload tonight!

Keep those prayers coming!

Until next time...
K.E.M

Psalm 59:16
But I will sing of your strength, in the morning I will sing of your love; for you are my fortress, my refuge in times of trouble.