Our daughter was diagnosed with Truncus Arteriosus around 20wks gestation. Means: " Truncus arteriosus (TRUNG-kus ahr-teer-e-O-sus) is a rare heart defect that's present at birth (congenital). This means that one large blood vessel leads out of the heart. Normally, there are two separate vessels coming out of the heart. In addition, the two lower chambers of the heart are missing a portion of the wall that divides them. As a result of truncus arteriosus, oxygen-poor blood that should go to the lungs and oxygen-rich blood that should go to the rest of the body are mixed together. If left untreated, truncus arteriosus can be fatal. Surgery to repair truncus arteriosus is generally successful." Having Truncus Arteriosus is a 1 in 2,000 babies a year. We had her around 39wks and at Children's Hospital of Wisconsin, on October 5, 2013 at 3:33am. Her original due date was October 12, 2013 but because of the distance from our home to the hospital we had to be induced earlier. I was scheduled for a regular delivery. The last 3 months of my pregnancy I had to much amniotic fluid so she had a lot of room for flipping and turning around. Having the extra fluid made it hard to move, walk, or do much of anything. When it came to her inducement day she did not want to be head down, so they had us wait 15hours before they would try to do another ultrasound to check her position. She finally went head down, so they began my inducement, I went from 1cm to 3cm in a couple hours and the contractions were constant and getting closer. Unfortunately she was flipped in the wrong position again, so the doctors decided to we needed to do a c-section. When she finally came out they rushed her out and started ventilating her to get her breathing. After about 10mins or so went by and they brought her back in and I got to see her for the first time. My heart melted, she was beautiful and she was worth every last hard part of my pregnancy and Labor. On October 8th we got back one of her test results saying she did test postive for VCFS (Velo-Cardio-Facial Synrome) related to DiGeorge syndrome. http://bjp.rcpsych.org/content/179/5/397.long -- a link to a web page to explain more. For a baby to have this is 1 in 2,000 babies. We are still waiting on a couple more test results to see what else she may have. She will have a long hull through out her life. (October 14th). On October 10th, 2013 Emmalynn had her first Open heart surgery. They took her back to the OR around 7:45am but the surgery did not start tell around 10:30am. Finally, around 7:30-8pm they were pulling Ems out of the OR. Now at this time we are able to stand in a long hallway up against the wall. The OR team walk her up to you and you get to give your baby a kiss. I have to say I know they said she did great and she is going to be good. But seeing your baby lay in this bed eyes closed not moving your heart drops, your mind wanders else where. My husband and I struggled with seeing her like this. We have two older girls as well, both healthy and waiting impatiently to meet there baby sister. We are all separated and it is hard day by day only talking to my girls on the phone. We are hoping for a speedy recovery but we are not sure when exactly when we will be all back at home together under one roof. She did extremely well with recovery from her open heart surgery and it may of took her a couple days but she began eating from her bottle again. We were able to home Oct 28, 2013. Emmalynn has had a lot of different tests and appointments since being home. So far her heart is doing good and we have no concerns as of today Feb 1, 2014. On January 27th Ems had tubes put in her ears to make sure they drain the fluid that hadn't been draining since she was born. She had failed her first hearing test in the hospital so they did another hearing test and she is 100% hearing impaired. Which means she can hear low tones but can not process what the sounds are. She will be getting hearing aids in March to hopefully allow her to hear and process different sounds around her. With out hearing aids she can not learn to speak or what things are. She has some delays in her physical abilities, she does not open her left fist as of now Feb 1,2014. She works hard to get her right fist open most of the time and she tries to hold things in that hand. She can get her finger to her mouth and really tries hard to suck her thumbs but she can not keep her finger in her mouth very long. As of January 12, 2014 we were added to the birth to three program and is now working with a physical, occupational, and speech therapist. Soon we might be working with some specialist from Milwaukee that help with babies with hearing complications. As of April we have been added to the CCHD group (for deaf and hearing disabled children). April 3rd she had her surgery to remove her extra digits off of both her hands. She also got an echo done where they found moderate blockage in her artery. As of right now they are not to concerned about the blockage. The following week she received her first set of hearing aids. Mid April we received the OK to start her on solid baby foods. Most of April was just baby rice and green beans. As of April 29th her speech therapy through birth-3 has been canceled because Ems has shown so much progress with her eating from the bottle with out regulating it and no problems eating her baby food. May 5th 2014- Ems had her first eval from head to toe to see how her development is going. She was found to be behind in every area besides motor skills. When it comes to her speech, responding and listening (or turning to the person speaking) she was between 1-3months. June 2014- we have begun working with the cchd to help Ems get caught up on her learning & communications.. She is now working with cchd teacher & cchd speech as well as continued work with her physical and occupational therapist. We have constant appointments weekly but she is showing a ton of improvement.
9/9/2016 ---- I just realized how far i have let this section of Emmalynn's page go.. I am going to try to update a little below this comment of the major changes or happenings since June 2014.
~~Michelle (Ems mommy)
So on April 1st 2015 Emmalynn had her second open heart surgery because of her 1st conduit failing. By November 1st of 2015 Emmalynn was in for her 1st cath procedure because her conduit was failing again. So that bought us some time to make it to June 9th of 2016 for her 3rd open heart surgery. Now she has a pig conduit instead of the human cadaver conduit and it seems to be holding pretty well. In August of 2016 Emmalynn was diagnosed with Juvenile Idiopathic Arthritis. in September the swelling in her right knee and left ankle still didn't go down so they had to do a sedated injections (9-9-16) and removal of the fluid surrounding those areas. I am currently waiting for her to wake up to see how she is doing. Sept 6th 2016, ems had her first eye exam and although they did not find any swelling around her eyes.... they did find her vision is not the best 20/60 and she has a astigmatism in both eyes but left worse then the right. We ordered her 1st pair of glasses on 9-7-16 and we are hoping to have them by her birthday.
