Friday, October 19, 2012

Staying in Cincinnati

On Tuesday Chris and I had another fetal echo done at Cincinnati Childrens and we met with a CT surgeon. Cincinnati confirmed Dr. Patels dx for Brooklyn. Brooklyn has infradiaphragmatic TAPVC. She also has obstruction but they are unclear at this time of how severe the obstruction is. She also has pulmonary atresia. These two together make her an emergent situation. Due to this I will deliver at Cincinnati Childrens Hospital. Only the most severe cardiac cases deliver there. Brooklyn will undergo immediate open heart surgery. She will get a shunt for pulmonary atresia, and a repair on her pulmonary veins for TAPVC. We are told this will be an all day surgery. 15yrs ago it was a 95% mortality rate, but things have come along since then. Knowing my baby girl will go straight from me into surgery just breaks my heart. We are staying as positive and as strong as possible. Brooklyn is a fighter. She is going to come out and show the world just how tough she is. We were set on going to Boston and thought nothing could change our mind but on Tuesday after the 8hr appt. we left there confident in Cincinnatis ability to care for Brooklyn. Dr. Morales will be Brooklyn's surgeon. He has had much success with heterotaxy patients during his time in Texas, but he is now in Cincinnati and has had success with the few heterotaxy patients he has see here as well. I want to thank everyone for all the support we have received and continue to receive everyday. It means so much to us. My goal for at least the next 7-8 weeks now that we have our plan is to figure out how to keep Brooklyn in as long as possible. Thanks again to everyone for all your love and support. Brooklyn has an awesome crowd rooting her on ♥

Friday, October 12, 2012

Sitting her writing this with tears strolling down my face. I talked to one of the Dr.s in Boston this morning. He once again wanted to tell us how guarded Brooklyn's prognosis is since being diagnosed with Infrdiaphragmatic TAPVC with an obstructed vertical vein that drains into her liver. The fact that she also has pulmonary atresia makes it even more guarded. A pediatric cardiologist will be present at birth so Brooklyn will get an immediate echo and most likely go straight into surgery once she is transported to Boston Childrens CICU. We are told she will for sure have surgery within the first 24hrs. PLEASE PLEASE PLEASE pray for us and our baby girl

Tuesday, October 9, 2012

Yesterday was a very long day!! We started our day at 8am in Cincinnati and didnt make it back home until 12:30am. Brooklyn weighed in at 2lbs 12oz yesterday. 

We had a good appt with my OB and then headed to Akron Childrens to meet with Dr. Patel for our fetal echo. 

We spent over 3hrs with him. He was amazing! He saw all 4 of Brooklys Pulmonary veins. She does have TAPVC with obstuction. He also told us that her whole entire heart is on the right, not just the apex pointing to the right. He spent more time with us yesterday and was more thorough than Cincinnati was with both of the echo's they have done combined. In Cincinnati we always have a tech do the echo and then a cardiologist will talk to us for about 20mins. Our whole appointment yesterday was with Dr. Patel!!!!!! I cannot thank Kristen Spyker enough for helping that appointment happen ♥ We are 100% Boston bound. We will leave Thanksgiving weekend. Brooklyn's guarded prognosis just became more guarded. As we are scared for Brooklyn we know Boston will be the best place for her. Brooklyn has a very tough road ahead of her. Please keep our family in your prayers ♥
                                                            Brooklyn is waving HI!!!!!

Monday, October 1, 2012

28 weeks today!

Today we had our 28 week appointment. Today I had polyhydramnios so I have to cut out my sugar and carbs :( They had to buzz Brooklyn to get her to practice her breathing. She did not want to cooperate. Besides that everything looks good. 11 more weeks until she is here <3
On Monday October 8 Chris and I will be going to my regular OB appointment and then traveling 4 1/2hrs to  Akron to get another opinion from Dr. Patel. He is a cardiologist that has been very highly recommended to us. He will be doing another fetal echo. We are very excited for this appointment! I will also get to meet Kristen. Another mom whose son has Heterotaxy. Kristen has been great to us and very helpful.

Check out the blanket that the momma cave made for Brooklyn. Here is the link to her page. She does amazing work!!!  I cant wait for Brooklyn to use it. I absolutely love it <3

Saturday, September 29, 2012

Please help support a little girl (Brooklyn) who will be born with a disorder called Heterotaxy on December 17, 2012 by buying a T-shirt. The shirt is purple, and it comes in any size starting with youth small. All proceeds benefit Brooklynthebrave. If you are interested in buying a shirt please contact me (Amanda) @ Cost is $15 for adult S-XXL $18 for XXXL and up Youth $10, cash, check or paypal.

Wednesday, September 26, 2012

2nd opinion from Boston

Heard back from Boston a couple minutes ago in an email. This is what was said-
Maggi I have had the opportunity to review the images and it does appear to be a CAVC, DORV with Pulmonary atresia. I was not sure but I do suspect the baby might have anomalous pulmonary venous connections.
Now we need to make decisions and decide what is best for Brooklyn. Please pray we can make the right decision no matter what it is.

Monday, September 24, 2012

                                                                        27 weeks

                                                                    Nose and Lips
Had my 27 week appointment today. We got to see some close ups of her. We just love seeing her! 12 more weeks until we get to meet our baby girl <3