Sunday, November 28, 2010

1st meeting with Children's

Thought I'd do a quick update...

So Dan and I meet with Children's for the first time this Wednesday Dec 1st.  It'll be a very busy day!  8:50am we'll have an ultrasound where they'll take a look at things followed by an MRI at 11am.  The MRI might be canceled depending on how things look on the ultrasound.  It was explained to me that an ultrasound gives us really good images of certain things and an MRI really good images of other things that an ultrasound can't get.  So if our ultrasound comes back looking good the neonatologist ("a subspecialty of  pediatrics that consists of the medical care of newborn infants, especially the ill or premature newborn infant") said most likely we'll cancel the MRI...if not we'll probably go ahead with it.  At 1pm we have a fetal echo which will be done by the cardiologist himself.  This will be nice as he will be able to tell us exactly what's going on with Gianna's heart.  At 3pm we'll have our meeting with the general surgeon who will be able to take all of the previous information and be able to answer our questions and be able to tell us where we're headed.  So it'll be a busy day, but I'm sure we'll be getting tons of really good information.  I was told to write down all my questions and bring them in!

I'm very pleased with Children's already.  On Wednesday night at 6pm I received a call from the neonatologist down there who called me from her cell at home just to answer any questions I may have and get a better understanding of what we know about Gianna's situation.  She told me how Wednesday was going to go and reassured me that Children's will be doing tons of homework to ensure that Gianna will be in the best possible hands and will receive the best treatment.  It's always bothered me that Brigham and Children's are across the street, but she told me they're connected by bridges and that when I feel up to it after delivery they will make sure I get over there to see her whether they wheel chair me or stretcher me over there...how awesome is that! We are very hopeful!

I'll have much more information for you on Wednesday and will keep you all updated!  Thank you again for all your prayers and I hope you all had a wonderful thanksgiving!  Dan and I had a lovely Thanksgiving with both families and feel so blessed to have such incredible support and love from you all! :) 

Until next time...

K.E.M

Romans 15:13 "May the God of hope fill you with all joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy Spirit."

Tuesday, November 23, 2010

2nd Ultrasound and pictures!

We had our second ultrasound and a regular checkup today.  Checkup went well...Gianna's heart sounded like the chug chug of a choo choo train the doctor said lol.  After that Dan met me for the ultrasound...we loved seeing your pretty little self Gianna!  It looked like you were sleeping and we were able to get some really good profile shots of you!  I don't think you liked being poked around, because shortly after you started to move around!  You were so cute when you took your hand and put it up to your mouth like you were sucking your thumb! :)  We loved looking at your cute little profile...you have the cutest button nose! :)  Your mommy and daddy are very excited to meet you and hold and kiss that cute little face!  At one point during the ultrasound you stretched your legs out completely and stretched your arms way up almost as if you were yawning lol :) You weigh 12oz and are about 15.5cm long...the sonographer said you're the size of a chubby barbie doll lol. The doctor said that your looking good and we all want you to just keep getting stronger and bigger!

We don't have anymore visits scheduled with Dr. Kaufman because he wants us to start meeting with Children's in Boston.  They are sending a referral down today and we will be waiting for them to call us with an appointment.  At this appointment we can expect they said to spend the whole day there.  We will be meeting with all sorts of doctors and probably get an ultrasound as well as another fetal echo.  We'll meet with the genetic counselors, pediatric surgeons, maternal fetal doctors, visit the NICU etc.  They said we'll probably end up in Boston for appointments once a month, and in between back up at Dartmouth for followup visits with them. 

A lot of our questions about when the baby will be delivered, whether or not it will be natural or c-section, methods of closure for the omphalocele...basically course of action and surgeries etc will be answered by the doctors down there.  So a lot of our questions are going to have to wait until we meet with them.  It is definitely the liver stomach and intestines that are outside the body, which could mean a lot longer waiting period for everything going back in after Gianna is born.  They said that it is very probable that we will be spending a significant amount of time down at Children's after Gianna is born. 

So as of right now everything has stayed the same and our next step is to meet with our team down at Childrens.  As far as her heart is concerned...we won't know much more until we have a second opinion and more pictures. The doctor said that even in just one to two weeks they'll already be able to get much better pictures as the baby grows.  He said to stick that thought about the heart on the back burner for now and wait until we can get more definite answers.  There definitely is a hole in her heart, but as far as how big and whether or not it looks it will close up on its own is going to have to wait. 

I think that's all we have to report right now.  I'll make sure I keep you all updated!  Everyone have a wonderful Thanksgiving...this Thanksgiving Dan and I are eternally grateful for this beautiful little girl that will change our lives and the lives of others forever.  We are also so thankful for the tremendous support from family friends and complete strangers...your prayers mean so much to us!

Gianna, daddy and mommy love you very much and we're doing everything we can for you...keep fighting as we are fighting for you!

Until next time...

K.E.M

Thessalonians 5:18 In every thing give thanks: for this is the will of God in Christ Jesus concerning you.

Look at that cute little button nose!
 The bottom right her finger in her mouth!

Saturday, November 20, 2010

20 weeks :)

So Friday we hit 20weeks :) Little miss Gianna has been moving around a lot more especially at night when I'm laying down.  She gets rocked all day while I'm on my feet at work and I don't think she appreciates at night when I stop ;). 

My belly is getting bigger...my jeans keep telling me that lol.  I don't think I can put off buying maternity pants anymore!  I'm happy to see that she's growing though...keep getting stronger Gianna!

People are starting to notice that I'm pregnant and not just fat now lol.  Patients keep asking when I'm due and what I'm having.  It's kind of a difficult question still for me to answer.  Obviously I'm overjoyed I'm pregnant, but once you answer the first question its followed by tons of others which eventually leads to me having to say "Well we're having a complicated pregnancy" and then you could just cut the air with a knife from the awkwardness lol.  The fact that someone might be having a complicated or high risk pregnancy really is the furthest thing from someones mind when they see a pregnant woman.  It gets easier everyday as reality sinks in and I accept the fact that this is what it is and there is no changing Gianna's situation.  Why should I deny Gianna and not talk about my pregnancy and daughter like everyone else does.  I'm not afraid to explain our situation and make people aware of what's going anymore, which relieves a little stress off of me.  My advice to those out there who see a pregnant woman is just to be aware that their situation may not be normal to be happy for them but not to pester with too many questions too soon...let the new mom talk to you. 

Thank you again for all of your support and prayers...I will update everyone on Tuesday with news from the doctor and some new ultrasound pictures!

(btw-isn't the song Miracle by Celine Dion such a sweet song!)

Love you all!
K.E.M

Wednesday, November 17, 2010

19 weeks Fetal Echo

So we just got back from our first fetal echo.  After laying on the exam bed for over an hour and trying to make out some of the pictures they were looking at of the heart, the doctor told us Gianna has  Ventricular Septal Defect ...layman terms a hole in her  heart.  There is a rather large hole in the muscle tissue and membrane that separates the left ventricle and right ventricle.  Obviously not what we wanted to hear, but she did say that sometimes the hole repairs itself with monitoring and medication.  In other cases where the hole is too large and after a period of months the baby is not responding to treatment they will go in an surgically repair it.  The other questionable thing she saw was what could POSSIBLY be Tetrology of Fallot :
The classic form of Tetralogy includes 4 defects within the heart structures:
  • Ventricular septal defect (hole between the right and left ventricles)
  • Narrowing of the pulmonary outflow tract (tube that connects the heart with the lungs)
  • An aorta (tube that carries oxygenated blood to the body) that grows from both ventricles, rather than exclusively from the left ventricle
  • A thickened muscular wall of the right ventricle (right ventricular hypertrophy)
Little miss Gianna wasn't being very good and the doctor was having a very difficult time getting some good pictures of her heart so she would like us to follow up with either Boston Children's Hospital for another fetal echo or if not with them again with her in four weeks.  She is e-mailing all of her pictures and reports to her colleague at Children's and we will wait to hear from them.  Next appointment is scheduled for next Tuesday with our OB for a normal checkup followed by an ultrasound to see how things are developing with the omphalocele etc.

On to some happy news...Dan and I both have felt Gianna kick!  It was so entertaining watching my stomach twitch and move as she pressed against it.  Dan came over and I had him put his hand on my stomach and as soon as he did she kicked right against his hand!  She loves her daddy :) 

Trying to stay very positive!  God already knows the outcome and knows that whatever happens we will be able to handle.  It is very comforting knowing that we have so many people out there praying for us and little Gianna...keep the prayers coming!

Until next time...

(Isaiah 41:10) Don’t you be afraid, for I am with you. Don’t be dismayed, for I am your God. I will strengthen you. Yes, I will help you. Yes, I will uphold you with the right hand of my righteousness.

K.E.M