Owen Ate His Wheaties!

photoWow! 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

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Poked, Prodded, and Perfect

20130411-214607.jpgWhat an adventure we had today! Our day started a little rocky but we learned that God always has a Plan B. Once again all that we had planned when we walked out the door in Palm Desert at 7:00am was flipped and turned upside down by the time we arrived in Los Angeles at 9:45am. The original cardiologist we had hoped for was on vacation in New York and they had scheduled us with someone we were unfamiliar with. Our 10am appointment was then running incredibly late and interfering with our 11am appt. We had 3 appointments scheduled back to back and needed to see all of them before returning home. Despite all the nervousness we were feeling and the hiccups we were experiencing the team at CHLA were the most compassionate group of professionals and welcomed us with the widest open arms and eased our anxieties immediately.

First, we met with the Cardiologist and Owen was on his BEST behavior! For the first time we heard a doctor say, “Wow! He’s at the perfect angle and I’m getting the best pictures!” She said multiple times that they were such great images and she was looking forward to sharing them with her colleagues at the next conference. She confirmed Owen’s diagnosis as Truncus Arteriosus. She says she will not know the exact type until he is here but pretty sure its a Type 1 or 2 so for now she is calling it a “Type 1 1/2”. After the ultrasound, she lead us to a conference room where she went over every detail of Owen’s surgery and showed us full diagrams of the repairs needed on his heart. They call this surgery a Rastelli Repair and it has a very positive outcome. She answered every question that we had in regards to before, during and after his surgery. We received detailed information on his recovery and we both feel very prepared for whats ahead. She took the time with us to treat us like humans and we were so thankful that she was our cardiologist! When the appointment was over, we walked out of the room with a huge weight lifted and no more unanswered questions!

Next we met with our new Perinatologist. He was very warm and welcoming. He did a BPP ultrasound, an umbilical doppler and even showed us the blood flow through Owen’s brain! He was very pleased with the care we have been receiving by Dr. Steiger and agrees to continue the monitoring as we have been. He confirmed Owen’s growth delay but assured us that it is common for heart babies and that they will continue to monitor it closely.

Last, we met with our new OB. She was fabulous and answered all questions I’ve had about delivery! With all that has been going on with Owen I forgot that I still have to give birth! My nerves started to get the best of me but she calmed me down before I could give it a second thought! I am very happy to have her as my coach on Owen’s birthday!

After a long day of being poked and prodded we were spent, however our OB had one more piece of information she needed to go over. Owen’s Due Date! We will be going in at 7am on May 15th to begin induction and welcome our precious miracle into this world! We are scheduled to have him naturally and pray that all goes well with the delivery and that God doesn’t change to a Plan B for that day! All in all today was a perfect day!

“Do not worry about anything. But pray and ask God for everything you need. And when you pray, always give thanks”. Philippians 4:6.

Be Still

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Today we visited our specialist, Dr. Steiger. We used to call him Dr. Dread, as every time we would see him it’s bad news. He is an incredible doctor and so gentle and kind to us. It’s not his fault that he has to be the bearer of bad news every visit! But still we have given him that nickname and unfortunately he’s earned it. It helps to add humor wherever we can.

Owen once again borderline passed his non-stress test. He has not been reaching his accelerations within the expected time period and after an hour they decided to call it and say he passed with an “ok”. We then met with the ultrasound tech for the growth scan. It was so wonderful to see Owen. It warms my heart every time we get to see his face. When the test was done the tech was concerned and needed us to meet with Dr. Steiger. We knew it wasn’t going to be good. Dr. Steiger told us that Owen has dropped to the 8th percentile for his growth. He has gained half a pound in the last 3 weeks and weighs approximately 3 lbs. Unfortunately he should have gained much more. The doctor said its common for heart babies to be small but they would like to do all that they can to make sure that his growth does not fall further behind and he is big and strong for his surgery.

I was taken out of work today and put on modified bed rest. It was the last thing I expected when I woke up this morning. I have a very difficult time being still and am not looking forward to 5 weeks of laying on my left side and “taking it easy”. I know it’s the best thing for Owen and I will be plenty active once he is here. I have a sense of guilt relaxing when so much still needs to be done and others are working so hard. As I was wrapping up my files at work today I was overwhelmed and anxious. Psalm 46:10 “Be still and know that I am God” kept coming to mind and I know will be so comforting during this next phase in our journey. It helps me to feel peace and calm knowing that once again He has placed me exactly where I need to be. He is reminding me that in the stillness he is perfecting and growing his miracle just as he has planned. So for now it’s a stack of books I’ve been meaning to read, a wedding album I’ve been needing to make, a baby book I’ve been meaning to start, and lots of thank you cards to write for all the incredible generosity we’ve received.

We are so blessed to have Dr. Steiger and his phenomenal team at Desert Regional Medical Center keeping such a close eye on our little lion heart. Our ever talented medical family is growing and our next follow up appointment is April 11th at CHLA and Hollywood Presbyterian. We are looking forward to meeting the new team and hoping to see some growth out of Owen in the coming week!