Owen Ate His Wheaties!

Wow! and Thank You is all we can say! I was so anxious to go to our appointment and receive Owen’s new weight and growth report yesterday. Every appointment gets the butterflies going but this one got me especially nervous. At the end of this week I am 37 weeks and Owen is considered “full term”. He can make an appearance at any time. Knowing he had not been growing at the expected rate and that he was more than a pound below the required surgery weight of 4 lbs 4 ounces or 2 kilos had been rocking my world! Feelings of doubt that everything will be okay and overwhelming emotions that I was failing were consuming my daily thoughts. My goal has been to eat lots of protein, calcium (aka ice cream), and try my hardest to relax (which anyone who knows me, knows that this is a HUGE challenge for me).  All I have to say is it worked! Owen weighed an estimated 5 lbs 2 ounces (+/- 7 ounces)! That is not a auto correct error folks, that’s FIVE POUNDS TWO OUNCES!!! He demolished our goal and proved just what a lion heart he is! Watch out world in 18 days this little champ will be here! In that little bit of news, he took all 5 lbs and smashed my fear and doubt and said “Mama we did it!

As always, we met with several doctors during our visit. There will be about 10 people in the delivery room including Jeff and I and we are getting to meet all of them prior to the big day. We started our morning meeting with our Perinatologist. A Perinatologist specializes in the care of the fetus in high risk and complicated pregnancies. The doctor began with an ultrasound to check everything. Owen’s femur and body are still measuring small. He also may have 3 kidneys! This is the first time that we have been advised of this. The doctor did not seem too concerned with it and said that they all look to be functioning. They will look closer when Owen is here and see if this will cause any issues and if 3 are in fact present or if his right kidney is just oddly shaped and causing it to look like 2 kidneys in the ultrasound. My amniotic fluids look great and he is still head down and in the perfect position to have a vaginal birth. They then gave us the greatest news of his weight! I’ll say it again, 5 lbs 2 oz!

Many people have asked me why we would opt for a vaginal birth over a cesarean section knowing that Owen has a heart condition. We have been told that the natural process of giving birth is best for the fetus and the mother. The process of labor prepares the baby for taking his first breath when he arrives. When a baby is in the womb the lungs are filled with fluid. The stages of labor trigger the baby’s lungs to change and harden to get ready to take their first breath. A c-section can effect this process. Some healthy babies can have problems with breathing after a c-section and this can be an even bigger problem for a baby with a heart condition. The doctors would like me to try for a vaginal birth and if at any time the baby or I show any signs of distress they will do a c-section.

After the Perinatologist we met with the Neonatologist. A Neonatologist specializes in the immediate after care of a newborn, especially with ill or preterm newborns and are in charge of the Neonatal Intensive Care Unit (NICU). The Neonatologist sat us down in a conference room to go over what it will be like immediately after he is born. With the information they have on Owen’s condition, at this time the plan is, when he is born they will take him and clean him up and check all of his stats. They will then put him on a warming bed and wheel him over to me before taking him to the NICU at Hollywood Presbyterian. The whole process will take roughly 5-10 minutes. My husband will go with him to the NICU and I will go to recovery. I will be taken into a private hospital room to recover. The room will be cleared of a bassinet, diapers, and all things a Mom would need when rooming with her newborn. The hospital has taken much care for mothers of heart babies to be sensitive to the moments that you are away from your spouse and brand new baby. If I am able to have a vaginal birth I can be discharged in as little at 24 hours. A c-section will have me there for 48 hours. Owen will be transferred via ambulance (next door) with his new Daddy to CHLA several hours after birth. If all is well they will be able to wheel him to my room for me to see him one more time before he goes. This will be one of the hardest parts of our journey. We will be a new family but not yet be together. We are so grateful for the whole team to provide us with all of the information so we can prepare our hearts and our minds. We have been able to grieve our perfect birth plan and get ready for the mountain ahead!

The Neonatologist and the Perinatologist also spoke with us for quite sometime about possible genetic issues. While I believe in my heart of hearts that there is nothing to worry about, it is still a possibility and they are preparing us for everything. We had opted out of first trimester screening (nuchal translucency test) and decided not to do an amniocentesis because of the risks to Owen. Since Owen shows several markers for chromosomal abnormalities (ie. heart condition, small femur, single umbilical artery, and kidney issues) and we did not do the testing we can not rule these abnormalities out. Owen still has a 0.5% chance of having down syndrome and 30% of children with Truncus Arteriosus have DiGeorge Syndrome. DiGeorge Syndrome is a spectrum disorder. The medical problems commonly associated with DiGeorge syndrome include heart defects, poor immune system function, a cleft palate, complications related to low levels of calcium in the blood and behavioral disorders. A full genetic screening will be done on Owen when he is born to rule out any chromosomal abnormalities. The doctors have encouraged us not to worry and continue to take it a day at a time and “roll with the punches” as they come.

Lastly, we met with our OB. We have two so that we know both of them and are ready with whoever is on call when Owen is ready to come. They are both the most professional, calming, and educated women I have encountered in this process. They provide me with an incredible sense of peace and a sincere trust that everything is going to be okay. They told me that everything looks great as far as my pregnancy is concerned. They have moved the induction date to May 14th at 9:00am to make sure that the surgeons are available and that Owen can have surgery as soon as possible should any issues arise when he is born. They would like me to be in the Los Angeles area the week prior to his induction date just in case he decides to come early. I am so grateful for my brother and sister in law for their hospitality and allowing me to take up residency in their guest room and on their couch during this time!

After all of our appointments, we were headed home and my husband decided to celebrate with a surprise date in downtown Pasadena! Dating at 9 months pregnant is much different than dating was before. There is no wine, no staying out too late, or sexy little outfits. However, there is shopping at baby stores, an awesome lunch outside, delicious strawberry lemonade, and shared dreams about what life will be like when we are a family of 3!

I know we end every post with our sincerest thank you but we feel we can not express it enough. Our heart family continues to grow and we are so comforted by the thoughts and sweet notes we receive on a daily basis. We’d like to give a special thank you to all of the medical staff we have encountered in the Desert, Riverside, and Los Angeles. The early detection and constant observation has given us a peace of mind and let us know that we truly are in the best care and Owen is going to be okay. We feel so blessed to have this time and to have found out his diagnosis early. Many families are not provided the time to process and plan for this. Additionally, we want to thank all of the family and friends that are helping to get me to appointments, keep me company on bed rest, make us dinner, house sit for us when we are at the hospital, take care of our plants and most of all take care of our first born, Jaxon! As we said in the beginning, it takes a village. Knowing that our home and our pup are being taken care of with so much love means the world to us! We are forever indebted to your kindness.

1 Corinthians 13:13 “And now these three remain: faith, hope and love. But the greatest of these is love.”

Please note: My husband and I are NOT medical professionals and are communicating this information after very long and intense appointments with a lot of information. We try our best to do research and relay the facts the best that we can. If you are a heart family reading our blog and utilizing it to help make decisions please be sure to consult with your medical professionals as well. The posts on this blog contain information we have received specifically for Owen’s care and may not be appropriate for everyone. Our hope is that our blog can encourage you to ask questions, find comfort and support, and to learn more about congenital heart defects.

For more information on DiGeorge Syndrome visit http://www.mayoclinic.com/health/digeorge-syndrome/DS00998