Tuesday September 18

     We decided we wanted to meet with the cardiothoracic surgeon before October 16, so I called Cincinnati Childrens Monday and she scheduled it for the very next day, today!! We were so anxious to speak to Dr. Morales and ask him the list of questions we had compiled for him. Dr. Morales was prepared for us. He first went over the anatomy of Brooklyn's heart and the defects that they have been able to see so far. He drew us pictures of each individual diagnoses. He made sure we understood her diagnoses before he went any farther. He also explained how he has worked with and operated on many children with Heterotaxy when he was at Texas Childrens hospital. He has also done research and publications on Heterotaxy. It is a passion of his and he takes special interest in it. He went on to tell us his plan of care for when Brooklyn comes. He went over her first surgery, will be a shunt, and also talked about the second surgery she would have between 3-9months(bi directional glen), and when she would have her third surgery between 3-5yrs(fontan). He also explained that there are still things we need to see with Brooklyn's heart, and until he feels completely comfortable with the images he has, he will not operate. He wants to be 100% when she goes into her first surgery. He did talk to us about the probability that she will go down to a one ventricle heart. A one ventricle is better than a bad two ventricle. We also talked about the likeliness of her needing a heart transplant between the ages of 15-30yrs old. He was very thorough with us and answered almost all of my questions before I even got to ask. When he finished I did take out my list of questions and he answered every one of them that I asked. We also talked about getting second opinions and he offered his help. He wants us to be completely comfortable with our decision with where Brooklyn's care will be. Dr. Morales PA also shared her story with us. She is 32yrs old and has Heterotaxy. How ironic and amazing to have her standing in front of us and be a part of Brooklyn's team!

     After leaving our meeting with Dr. Morales we are feeling much more confident about staying in Cincinnati and having Brooklyn's care with Dr. Morales. We are still waiting patiently to hear from Boston and get their opinion. Whatever path we are meant to take we will take. All we want is the best for Brooklyn! 

He is the reason we are heavily considering delivering Brooklyn in Boston and having him and his team be the ones to care for her cardiac issues

september 14th

     I picked up my records from Cincinnati Childrens hospital yesterday and sent them out Fed-Ex today. Now we just have to wait and hear back from Dr.Marx and Dr.Del Nido. The waiting game sucks!!!

september 12th

     I received an e-mail from Dr.Marx this morning. Dr Marx asked me to have Brooklyn's images from her last echo sent to him. He also talked about the probability that I would need to deliver in Boston and this would require me to be there no later than 36 weeks gestation(Nov 26). After reading his e-mail i called Cincinnati Childrens and asked if I could get copies of my fetal echos along with the reports from the Dr.'s.

september 10th

     OB and ultrasound appointment. At 25 weeks gestation Brooklyn weighs in at 1lb 9oz. She is measuring right on track  After my OB appointment Chris and I went to Cincinnati Childrens to meet with Dr. Ware(geneticist).  Dr Ware is well known in the Heterotaxy community for her knowledge and the research that she has done and continues to do. After speaking with Dr Ware we decided that after Brooklyn is born we will have the 4 gene heterotaxy panel done to see if they can find any genetic link of why she has heterotaxy. After leaving her office we kept talking about all we knew so far and what all we still needed to figure out about Brooklyn and Heterotaxy. I went to the computer and started doing more research. I stumbled across the Heterotaxy Hope Organization and The Heterotaxy Network on facebook. I put a post on there introducing myself and explaining what issues Brooklyn has in her Heterotaxy diagnosis. Replies started coming in almost immediately. I could not believe I found a site where it is full of mothers with children who share the same diagnosis(Heterotaxy) as Brooklyn. Since finding these two pages i have been connected with some amazing people. I have been able to ask questions receive input, and get advice from people who understand Heterotaxy first hand. I have only been a part of this community for a few days, but they already feel like family. After listening to other stories of children with heterotaxy and hearing about where they had their care at, we decided we wanted to see if we could get a second opinion from Dr. Del Nido. After speaking more with a wonderful group of moms who have Heterotaxy children themselves, I  sent out e-mails to Dr. Del Nido(CT surgeon) and Dr. Marx(cardiologist) on Sept 11.

september 4th

     Today was our second echo after about an hour of imaging the sonographer went to turn in her report to the team of cardiologists. After waiting a short time Dr. Heydarian (cardiologist) came in to speak with us. She began to draw images on a dry-erase board of what is going on with Brooklyns' heart. She told us how they see another hole in her atrium(asd).With the other hole found in her heart from a previous echo she was now diagnosed with AV canal defect. She went on to tell us that they do not see where her pulmonary artery is connected to her right ventricle. This diagnosed Brooklyn with pulmonary atresia, which will now be Brooklyn's biggest concern. This diagnosis requires Brooklyn to start on prostaglandins immediately after birth to keep the DA(ductus arteriosis) open. The DA is a blood vessel connecting the pulmonary artery to the aortic arch. It allows most of the blood from the RV(right ventricle) to bypass the fetus' fluid filled non functioning lungs. The DA starts to close immediately after birth but for Brooklyn we need it to stay open. This is where the prostaglandins come in. Keeping the DA open is Brooklyn's LIFELINE until she can undergo open heart surgery. At this point we are not sure of exactly how many or what surgeries she will need to have. Once she arrives they will do an echo, chest x-ray, abdominal x-ray and an MRI to get better images of exactly what is going on with her. Dr. Heydarian predicted that the first surgery Brooklyn would undergo would be a "shunt" from her Aorta to her pulmonary artery. Once again we left the Dr's. office sad and overwhelmed  Yet again we were told of  more issues our daughter has and what a tough she road will face after birth.
  We scheduled our next echo for 10/16. We would then have a meeting with Dr. Morales(cardiothoracic surgeon) and also tour the CICU.  All i could do now is research and find out as much as i could about Brooklyns' diagnosis to prepare us for what is to come.
   Through my research I kept coming across the name of a surgeon at Boston Childrens Hospital, Dr. Pedro Del Nido and he is the #1 pediatric cardiac surgeon and he is also #1 for  Heterotaxy.  Boston Childrens Hospital is also  the #1 hospital for Heterotaxy. This really peaked our interest.

august 24th

     Finally, today is our team meeting!!!! We first met with a nurse from the fetal care center of Cincinnati, then a social worker, then a geneticist from Cincinnati Childrens. We then waited while everyone gathered in the conference room and prepared for our meeting. When we went into into the room we sat at a huge round table and all of the Dr's. began to introduce themselves. We met Dr. Lim  from general surgery, Dr. Kelly from neonatology,  Dr. Michelfelder from cardiology, and Dr. Hopkins from genetics. There were also a few familiar faces in the room Judy(our coordinator from UC and Cincinnati Childrens)was the there along with Dr.Jaekle (my OB).  Dr. Lim(general surgeon) began the meeting. He pulled up the images from the fetal MRI on a projection screen. As he scrolled through the images Chris and I saw the most amazing image of Brooklyn. You could actually see her whole profile, every little bone in her fingers, toes, and spine. It was truly amazing. Dr. lim showed us the images of her heart where we could actually see with our own eyes how the apex of her heart points to the right, we could also see on an image how her liver sat transverse in her body.  They showed the gallbladder on her left and they showed where the spleen should be and how there is not one that can be seen. He also showed us an image where you can only see meconium on her left side. He told us this is why he believed her bowels may be rotated. He then passed it off to Dr. Michelfelder.
    Dr. Michelfelder started off by telling us that that Brooklyns' most concerning issues are her cardiac issues. He told us they still needed to see her pulmonary side which they have not been able to see so far, being able to see this would help give a better understanding of what is else may be going on with her heart and what treatment she will require after birth.
     Dr. Kelly from neonatology also spoke for a brief minute telling us they would be in the delivery room, and would do all they can for Brooklyn, and be as prepared as they could be for her when she arrives.
     Dr. Hopkins also spoke and told us how there is a cardiac geneticist that specializes in Heterotaxy. We told him we would be interested in meeting with her.
     After about 2 hours we concluded our meeting. We left there feeling like we had a plan and had a team that was following Brooklyn and preparing for her arrival. This was a good feeling for us.