"life in review" and FAQ's

I realize that over the past few months we have several new followers that may have started reading our journey in the middle and may not be too sure of what all is going on or has gone on in the past to lead us to where were are today. This is the main reason for this post, and also to write out answers to some very popular questions I have been asked lately on a regular basis.

The easiest way to do this is in a timeline format - hopefully it all makes sense! Here are a few key "players" in our journey:
Dr. Pohl - my regular OB doctor
Maternal-Fetal Specialists - high risk doctors
Dr. Videlefsky - the pediatric cardiologist
Dr. Kanter - pediatric heart surgeon

My name is Ashlyn and my husband is Josh Murphy. We are expecting our first child  - a boy! - and he is due on May 21 (I am getting induced May 7). We have been married since April 7, 2012 and are excited for our new arrival! I was over the moon excited when we found out we were pregnant back in September of last year.The pregnancy started out just as any other with a fair share of morning sickness and crazy body changes. We found out in early December that we were having a boy, and I will admit my fingers were crossed for a girl, but you all should have seen the look on Josh's face when he realized he was going to have a son :) We went in for our 20 week ultrasound with our regular OB, and this is where our lives were turned upside down. I had even had several nightmares the nights before that the doctor would enter the room and tell me something tragic - I went in to the appointment hoping these were just nightmares and nothing else.

January 4 - Our 20 week anatomy ultrasound was scheduled and the ultrasound technician took a lot of pictures and confirmed that we were indeed having a boy! Throughout the beginning of the ultrasound she was really friendly and talking a lot, but towards the end she got quiet and was taking a lot of pictures of his heart and brain. I was suspicious but thought that it was probably nothing. I mean we hadn't ever done this before so I had no idea what to expect. Dr. Pohl entered the room and said "Well, there are two areas of concern....." What he said after that is a mystery to me because I tried to keep the tears from falling and from completely losing it. There was areas of concern with his heart and we were being recommended to Maternal-Fetal Specialists. They would schedule the appointment for me and be in touch. And just as quickly as we had entered for the appointment, we left.
January 9 - We went in for our appointment with Maternal-Fetal specialists, not knowing what to expect. They did another ultrasound and concluded that they really couldn't tell me what was going on and they wanted me to see the pediatric cardiologist. They asked when we would be able to go, and my immediate response was, "today," and sure enough they scheduled us for that afternoon. They also wanted to do an amniocentesis to see if the heart problem could be genetic related. They completed the procedure, we went to lunch, and then headed to the cardiologist appointment. All the while we are still hoping that nothing is wrong with our sweet baby. Dr. V had something else to say though, and was able to give us a definite diagnosis - our baby boy has Tetralogy of Fallot with Absent Pulmonary Valve Syndrome. These are two separate issues but when combined are a very rare congenital heart defect.

(For more about these three appointments you can read more here. You can also read more about our emotional struggles after the diagnosis here or in this post).

January 23 - Due to the diagnosis our baby will have to have surgery on his heart sometime after he is born. We won't know if it will be sooner or later until he gets here and they can see how he is functioning on his own. Through Dr. V's office we had a tour set up of Egleston to meet the Dr. Kanter and get an idea of what all would happen before, during, and after the surgery. It was good to be able to tour the hospital and get a general idea of the process. You can read more about this consultation here.

We had several appointments throughout the next weeks for check-ups and everything continued to look the same, which was good. Nothing prepared me for what would happen next.

February 7 - we had a follow up appointment with Maternal-Fetal. The ultrasound technician was really nice and talked to us through the whole appointment. After she was done she said she wanted the doctor to come in a take a look, but once the doctor walked in I knew something was wrong. She said she saw some issues with his lungs and wanted us to come back on Monday to get it checked out again. I almost couldn't believe that all of this was happening again, but we scheduled the appointment for Monday and went home to wait.

February 11 - We headed back to the doctor for our follow up visit. We were told that the lungs had increased in brightness and the doctor was going to call our cardiologist's office to get their opinion. He also called his colleagues in Cincinnati who have great experience with lung issues in utero and they wanted to see us, and see us soon. We left the office and waited for them to call us and book the consultation and get everything in order to leave to go to Cincinnati not really knowing what we were going to hear. You can read more about this appointment here.

February 13-15 - We left to drive to Cincinnati on the 13, and all of our appointments were scheduled for the 14th. Talk about a nice Valentine's day gift! Luckily they did not find anything separately related from the heart so we were sent back to Georgia to just continue our monitoring here and also deliver baby M in Georgia. You can read more in depth about this trip by reading this post.

Since these few specific dates we have just continued along with the monitoring. I am measuring about 8-9 weeks ahead in my fundal height (measurement on the outside of my stomach from the top of my uterus to the top of my pelvic bone. This is due to having extra amniotic fluid and baby M is measuring about 4-5 weeks ahead on the growth ultrasounds. I currently have about 3 weeks to go until they are inducing me at 38 weeks and I am seeing the doctor twice a week! Below is a list of FAQ's about or situation that should hopefully help clear up some things for most people.

Frequently Asked Questions:

Q - What heart condition does baby M have?
A - Baby M has a rare heart condition known as Tetralogy of Fallot with Absent Pulmonary Valve Syndrome. You can read more about the condition at this website. It does not go in to great detail but can kind of give you a relatively basic understanding of what this means.

Q - Will you have to have a c-section?
A - As of right now the cardiologist thinks it will be best to try and delivery him vaginally. He is measuring ahead on the growth ultrasounds so if he gets closer to an 'estimated' weight of 10-11 pounds before the induction we may discuss having a c-section so we don't run the risk of him getting stuck during the delivery. I will, however, be monitored very closely during labor and they will intervene if he goes in to distress or heart failure at any time.

Q - When will baby M have his surgery?
A - We are not sure when the surgery will be because it all depends on how sick he is when he gets here. We are praying that he is well enough to come home and gain as much weight as possible before having his first surgery around 4-6 months of age.

Q - Where will he have his surgery?
A - The surgery will take place at Egleston in Atlanta.

Q - Will you have to deliver at Egleston?
A - No! I will actually deliver at Gwinnett Medical and they have a great NICU team that will be in the delivery room and take care of baby M once he arrives.

Q - Why aren't  you sharing his name?
A - When we first found out we were pregnant we almost didn't want to find out the sex of the baby. We gave in and decided to go ahead and find out what we were having, and with all of the extra tests we would have had they would have told us the sex anyways. Throughout the whole process we haven't had much control of anything, except for his name. This is one of the only things that just Josh and I know and are able to keep private. We also have complete control over it and are able to keep it our little secret. I know everyone is DYING to know his name, but this is the reason we are just keeping it between us and will reveal the day he is born!

Q - When can we come visit you in the hospital?
A - This is a tricky question. At this point in time we don't know when we will see visitors because we don't know what life after birth will be like. At this time we just ask that those who come to the waiting room respect any decisions we make in regards to having visitors. We do know baby M will be taken to the NICU right away and Josh will be going with him. As soon as I am able they will take me down there to be with Josh and the baby. We really won't have much time to see people in the room, especially since baby M will be in the NICU and not with us and we will be in the NICU as much as possible for however long he is in there. This isn't a "normal" birth where you generally go see the mom and baby soon after birth, so please don't expect that it will be this way. We do know that our close friends and family will be in the waiting room praying over the delivery and also waiting on the name reveal!

This post only took me about a week to write! There are still a lot of unknowns with the situation and I wish I had all the answers, not only for myself, but so I could answer everyone's questions. The best thing right now is that people continue to pray for us and baby Murphy as we get ready to begin the journey with his birth. I am always open to answering questions but I can't always promise that I will have an answer for you. I desperately wish that this situation was very different and as time gets closer and closer it is becoming more and more of a reality. Not that it wasn't real from the start but I could try and put it at the back of my mind because he is still safe and secure while inside. The real fears are of when he makes his arrival and we can see exactly what we are dealing with in regards to his heart condition. Please pray that the delivery will be smooth and they are able to get him stabilized and do an echo to get a clear picture of his heart. Please pray for wisdom of the doctors and nurses that will be taking care of our precious baby.


We have another doctors appointment tomorrow and I will update afterwards about both yesterday and Tuesday's appointment!

Ashlyn