#dovr

I had a sonogram scheduled at Magee at 9:30am and a fetal echocardiogram scheduled at 11 am. Carl was not able to be at this visit with me which sucked. It’s how things seem to go with scheduling though. We seem to be getting a taste of how hectic life is with a baby who has a CHD.  I have missed more work with these appointments over that last few weeks than I ever have the entire time of working at the salon. I am lucky to work for my sister who is 100% on board with whatever has to be done for Icie. All of our family members are in this with us, and Icie is their baby as well!

The sonogram was pretty routine.  I found out Icie is measuring right where she should be and weighs 2lbs 7oz. I got more adorable 3D pictures of her and off to the echocardiogram I went. The eco was also the same as last time.  Seeing my baby’s heart moving and hearing it beat should be comforting to me, but all it does is remind me of her heart defect.  Our poor little girl.

After the eco I met with the pediatric cardiologist once again.  She had 2 new pieces of information for me. It seems every time I meet with a doctor, or sonogram tech I find out new information.  It’s becoming normal to me- and that really sucks.

1.       This visit I learned that what Icie has is technically a TOF type. The new images seen at this appointment now points to “double outlet right ventricle”.  Basically, the aortic valve if pushed more to the right than normal. With TOF the aortic valve is in the “center” of the heart.  So since Icie’s aortic valve is more to the right it’s considered DORV.  The surgery will be the same. The only variation is when the patch is placed to cover the hole in the lower chambers of her heart it will have to be brought out more into the heart so that the patch can cover the aortic valve as well. The likely hood of there being small holes around the patch after surgery is higher with DORV vs TOF just because the patch is having to be stretched further.  I was told to not worry about it if that occurs. Small holes are better than one massive hole and sometimes they close on their own. I just learned the legit name to our daughters heart defect, once again.  

2.       As babies we are all born with 2 veins running from the heart. A right superior vena cava and a left superior vena cava aka SVCs.  The left SVC degenerates and we are left with only the right SVC. Whelp!!! Guess who has the left SVC also! Bingo baby- Icie.  Normally the right side of the brain and right side of the body’s blood goes to the right SVC as well as the blood from the left side of the brain and body. With Icie since she has the left SVC,  the blood from the left side of the brain and body will be routed to the left SVC first before being routed to the right SVC. The left SVC apparently runs behinds the heart before being routed into the right SVC.  I was told this needs no intervention and can just be left alone. I was also told that people who have this are normal and nothing results from it. Having a left SVC present is considered a rare congenital vascular anomaly.  We are 2 for 2 on the rareness count! This news really didn’t shock me. I had no clue this was a thing, once again, but I think I am just so use to hearing bad news at these appointments that it is becoming normal for me to react with a head nod and ask questions without crying.  I really wished Carl was here at this point. I was scared I would fuck up relaying the information to him, and this is important information! I had the pediatric cardiologist write things down for me on her print outs which definitely helped.  

We went over what will happen after delivery, just like last time. I also-once again- was told new information. Once Icie is born, she will be wiped down and taken to make sure she is breathing properly. If she is stable Carl and I “may” have a little bit of time with her alone.  Here comes the new info. After,  she will be taken and have lines run from her belly, hands , feet and sometimes head, since baby veins are hard to find, to monitor her 02 levels.  Poor Icie will have needles jammed in her fresh little body within 15 min of being born. Makes me very angry how unfair this entire situation is. All that comforts me now is that she will never remember any of this. Carl and I will though. Our family members seeing Icie for the first time all needled up will remember too.   Then the normal information Carl and I have had beaten into our brain was refreshed.  Carl will be in charge of watching the blue wavy lines which are  Icie’s 02 levels and the main question he needs to ask is if Prostaglandin (PGE) has been given.  PGE is a medication that is used to open the arteries to help with 02 absorption. If her 02 levels are above 85 she gets to go home with us if it goes below 85 off to Children’s Hospital for surgery. If she goes home my job is to fatten her up. They like to do open heart surgery on babies who are 8-9lbs and are 4 -6 months old. Hopefully we do get to take her home and enjoy our little baby. It would be nice to have her with us and pretend things are somewhat normal for a few months before we hand her off to a surgeon.  

On the way to the genetic department, I was somewhat bombarded in the hallway by a woman who runs a study on brain development and children with CHDs’. She handed me a packet of information about what would happen during visits and all of this stuff. Normally I like studies, I think they are beneficial and are great to research but I was really annoyed by this. I have enough appointments already and I really don’t feel like adding more into the mix, especially at Children’s Hospital.  Once Icie is born she would need to go to these appointments and once again, the last place I want to be with her once I get her home is back in a hospital. Sorry science, but not this time around. I need some normalcy with my child.

After that I went to see the genetics department to basically have the visit summarized and see if there were any more questions I had. I did not have any questions and by this point Carl had joined me and he had no questions either, so off to scheduling. The scheduling nurse was really on the ball and already had dates and times that we could be seen. There were 6 appointments that had to be coordinated within a certain time frame. The next set of appointments scheduled for March were another sonogram, echo, genetics department as well as a tour of the NICU. In April I had another sonogram, echo, genetics appointment and this time meet with a high risk delivery nurse just in case the midwives change their mind on me.