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
Wednesday, January 5, 2011
Tuesday, January 4, 2011
This New Year will bring great things!
So it's been awhile since I've updated this blog. Everything has continued to stay the same. Tomorrow we meet for the first time with Brigham and Woman's as well as Children's Hospital. At 9:30am we'll be having a follow up fetal echo to make sure nothing has changed with Gianna's heart. At 11am we'll be taking a tour of the NICU at Children's. I'm really anxious about both of these appointments. I'm not sure how I'll handle seeing the babies in the NICU and I just feel like reality will really hit. It is comforting know what good care these babies are getting and I just have to keep reminding myself that Gianna's condition is completely different from these other babies and that God is in control. He knows that we can handle this.
At 2pm we start back up with Brigham and Women's, which is connected to Children's by a bridge...one of the reasons I chose it. We will be having an ultrasound over there and then meeting with the doctor at 3pm. Another really long day, but hopefully full of good and positive news. I really hope to find out when our Csection is being scheduled. They said they wanted to deliver her around 37-38 weeks, which puts us around March 19th. I'd love to do March 19th because its St. Joseph's feast day as well as the day I was baptized. We have a very strong devotion to St. Joseph. So hopefully we'll find out tomorrow. It'd be nice to have a "due date" and be able to plan a little bit better.
I have had my normal appointments with the Hitchcock that have all turned out fine. She's definitely growing and a very active little girl! I feel her kick a lot more now. :-) My belly is definitely looking very pregnant now as well! I'm curious as to how she is going to look on ultrasound tomorrow! I can't believe we're already at 27weeks!
I hope you all had a very nice Christmas and New Years! Dan and I were with lots of family and had a surprise visit from Dan's older brother Tom and his wife Mary and son Damien who we haven't seen in years since they've been stationed in Hawaii! Love having you guys living back in the states...we might have to make a trip out to VA to visit sometime!
Dan and I were also able to spend a nice weekend away this past weekend at the Marriot in Fitchburg MA. It was nice to spend quality time away from everything with each other! :)
In a couple of weeks Dan and I will be celebrating our first year wedding anniversary! I can't believe it's already been a year, but in the same sense only a year! I feel like so much has happened in this past year! We've been so blessed with such a wonderful first year of marriage, good jobs, a comfortable home, such supportive friends and family and our biggest blessing Gianna! 2011 is going to be a good year!
I will be updating again with the results from my appointments tomorrow. Continue to keep us in your prayers as they have been giving us so much hope and consolation! We are so grateful for all of your support!
Until next time...
K.E.M
At 2pm we start back up with Brigham and Women's, which is connected to Children's by a bridge...one of the reasons I chose it. We will be having an ultrasound over there and then meeting with the doctor at 3pm. Another really long day, but hopefully full of good and positive news. I really hope to find out when our Csection is being scheduled. They said they wanted to deliver her around 37-38 weeks, which puts us around March 19th. I'd love to do March 19th because its St. Joseph's feast day as well as the day I was baptized. We have a very strong devotion to St. Joseph. So hopefully we'll find out tomorrow. It'd be nice to have a "due date" and be able to plan a little bit better.
I have had my normal appointments with the Hitchcock that have all turned out fine. She's definitely growing and a very active little girl! I feel her kick a lot more now. :-) My belly is definitely looking very pregnant now as well! I'm curious as to how she is going to look on ultrasound tomorrow! I can't believe we're already at 27weeks!
I hope you all had a very nice Christmas and New Years! Dan and I were with lots of family and had a surprise visit from Dan's older brother Tom and his wife Mary and son Damien who we haven't seen in years since they've been stationed in Hawaii! Love having you guys living back in the states...we might have to make a trip out to VA to visit sometime!
Dan and I were also able to spend a nice weekend away this past weekend at the Marriot in Fitchburg MA. It was nice to spend quality time away from everything with each other! :)
In a couple of weeks Dan and I will be celebrating our first year wedding anniversary! I can't believe it's already been a year, but in the same sense only a year! I feel like so much has happened in this past year! We've been so blessed with such a wonderful first year of marriage, good jobs, a comfortable home, such supportive friends and family and our biggest blessing Gianna! 2011 is going to be a good year!
I will be updating again with the results from my appointments tomorrow. Continue to keep us in your prayers as they have been giving us so much hope and consolation! We are so grateful for all of your support!
Until next time...
K.E.M
Subscribe to:
Comments (Atom)