I realized the other day so many people are praying for baby Davis and I and yet you do not get to hear about our situation and our updates first hand. I am hoping this blog will help!
Because the situation is so complicated I am going to start from the beginning so if this is repeat information for some of you I apologize....
On June 17th I had my first appointment with the OHSU perinatology department (dept for high risk pregnancies). I was referred to OHSU because they needed to check the baby's heart since there is a risk that my heart defects are genetic and I can pass them on. During the ultrasound they discovered that not only are we having a boy but he has something called gastroschisis. Basically this means that his intestines are on the outside of his body. They are poking out through a small tear on the right side of the bellybutton (umbilical cord). They told us that this is a completely random defect and has no genetic connection to us. It happens in about 1 in 5000+ babies. From there the doctors told us all the scary things related to this defect the worst being an increased risk of still birth. They also told me that I will deliver at 36 weeks (4 weeks early...which will be mid November) and then the baby will be rushed away to start the treatment process. This is where things get a bit uncertain....
There are several ways his treatment could happen because they will have to see his condition at birth. The intestines can become irritated, swollen, tangled and even in rare cases die off before he is born. No matter what he will have surgery to repair the defect but he might need a week or more of other treatments before the surgery depending on the condition of his intestines. He will remain in NICU at Doernbecher for a few weeks to a few months depending on how things go and how quickly he recovers. Most babies with this defect struggle with feeding in the beginning so that will also have an impact on how long he stays in the hospital.
At the same appointment that Brian and I found out about the gastroschisis the doctors shuffled us into another room with a new doctor. This doctor explained to us that while she was concerned about the baby's defect she was more concerned that I would not even survive the pregnancy due to my heart condition. Her exact words were that my heart valve would "spontaneously burst" due to the added pressure of pregnancy. She made it clear that my chances of surviving were slim and she recommended terminating the pregnancy. Terminating is not an option for Brian and I no matter how things looked for me and we shared that with her. She then told me that even if I did make it to the birth my heart could not hold up in a natural delivery due to the pressure and it could also not make it through a c-section due to blood loss. After that she said that since I was not having a heart attack at that very moment they wouldn't do anything that day but she would schedule cardiology testing and appointments for me in the following two weeks. Then we were told we could go.
It was quite a bizarre experience sitting there at 24 years old and pregnant for the first time and having the doctor tell me I am going to die. What was even more terrible is that Brian had basically been told to choose between his wife and his son. After that we headed home to sit and wait.
One of the first things we did when we got home was we decided to give the baby a name immediately so people could pray for him by name...We decided to name him Davis.
A few days later I went back to OHSU for cardiology testing but no answers were given that day or even that week. We definitely didn't sleep much, but at least I was still alive!
Two weeks after my first appointment at OHSU I finally got to meet with the cardiologist. He told me that while the heart defects I have can result in death during pregnancy my heart appears strong enough to not only handle the pregnancy but also the birth (natural or c-section). He cautioned us that things can change as the pregnancy progresses so they will keep a close eye on me but at this point things look good.
This week (July 13th) I have been up at OHSU for my latest round of testing. On Monday they did a fetal echo on Davis' heart and everything looks good at this point! One of the defects I have can develop later (even after he is born) so they will continue to check him. He was a very busy boy during the echo so at least that was fun for me.
We also had his check-up for his gastroschisis this week. At this point it is not getting worse....the intestines can actually start to pull the stomach or other organs down and out through the tear as well. Right now he
only has the intestines on the outside of his body and we want to to stay that way. The new concern they shared with me this week is that they are worried I will have pre-term labor and not even make it to the 36 week mark. They will watch me for that now too.
I'm sorry this posting is SO long but things are a bit complicated to say the least! This is the update for now. I will continue to keep everyone posted! Brian, Davis, and I need and truly appreciate all of your prayers and support. We are resting in the fact that even though this caught us off guard it did not catch the Lord off guard! Besides....boys love scars and now Davis can tell all his buddies that he was born with his guts on the outside :-)
Thank you again for all your support, we couldn't get through this without all of you! My next appointment is August 12th with the perinatology department and I will let you know what we find out.
