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.
Monday, December 6, 2010
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."
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!
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!
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
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:
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
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)
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
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