This past week has been an emotional roller coaster to say the least! We've been through differing doctors opinions and difficult choices during our time here at UCLA. Last Thursday after seeing the Cardiologist, we learned that Drake's heart had gotten worse. This led the cardiologist to feel the best decision was to deliver Drake ASAP. However, our OB had a different opinion, thinking it was better to continue to wait to allow him to mature and gain more weight/strength. Thursday night, Jon and I were totally overwhelmed. The doctors had presented both sides and told us "It is up to you what you want to do." We couldn't do it, making such a HUGE decision on the timing of his birth was too much. The pros and cons seemed too brutal. The main issue was presented as whether we wanted to risk death in utero or death out of utero. Both risks are very probable. So we were faced with: Keep him in and let him develop, but risk sudden death due to an arrhythmia in utero. OR Take him out and risk complications of prematurity on top of heart failure and hydrops, therefore leading to risk of death shortly after delivery. How do you pick between those things?? We didn't. We said we wanted more time to make a decision (I guess sort of by default opting to give him more time). We asked for another appointment with the cardiologist to see if Drake's heart was rapidly getting progressively worse on a day to day basis. He happily agreed to see us on Monday. We also met with our OB again yesterday, and she gave him a good look too via ultrasound. He had not gotten any worse over the past 3-4 days. Actually, one thing, the umbilical flow to the heart, actually looked a little better!
Sooo.... all that leads to the most recent update on Drake. Which was emailed out today:
The latest news to share is that Drake will only be cooking for another week at the most. After several ups and downs and back and forths, all doctors have come to agreement it is best to not let him stay in utero much more than a week. This is due mainly to two factors 1) His condition is very poor and he is at high risk for death in utero. 2) Although my preeclampsia remains stable, it is still severe and best not to push it much longer.
The cardiologist will be examining Drake again on Thursday. If his heart looks worse on Thursday, they will deliver him via C-Section either the same day, or the next day. If his heart looks the same as it did when he was examined yesterday, they will wait until Tuesday for the C-Section.
Once Drake is born, no one is sure how he will fare. The main priority will be to get him stabilized ASAP, which means he will be handed over to a team of doctors and taken to the NICU (Neonatal Intensive Care Unit). There are no surgeries that can be preformed for his condition. We've been thoroughly counseled on the reality that his chances of survival are poor. It could be hours, days, weeks, etc. The cardiologist said he believes there is about a 1% chance he will live very long without a heart transplant.
Many of you have asked what will happen once Drake is born if he does survive. I will do my best to answer that based off what we know right now. As soon as Drake departs from the womb and is stabilized, they will examine him thoroughly to try to determine what will be most helpful to treat him. They will also begin all the steps to evaluate him for a heart transplant. If he is considered a candidate for a heart transplant, the wait for a heart will be a couple of months minimum. (Key word there being minimum, since he will be so little the wait will be long!). The prediction is that Drake will need to remain in the hospital, under intensive care, until a heart is available. We're praying that he is able to maintain his strength and keep his fighting spirit during this time.
However, as we've said before, we also know we are literally praying for a miracle. That has always been the case. So far, he already is a miracle. The doctors all are surprised he has made it this far. This leaves us all filled with Hope, and leads us to pray for a BIG miracle. Drake will have many challenges to face and many odds to beat. Of course it is our personal desire, for our baby to be one of God's miracles. This is one of those seasons of faith where it is extremely challenging to pray for God's will, because we want our baby, alive and well, in our arms forever! We know we have to put all our trust in the Lord, and that no matter what happens, he will carry us through and he will be there. We're experiencing that every day now, as we are surrounded with love and support from others. God has been so good to us. Also, the gift of being at one of the best hospitals in the country. The team of doctors and nurses have been not only brilliant, but also kind and compassionate. We are very lucky.
A few specific prayer requests in addition to what we have mentioned above. As if the above were not enough to ask for! :)
1) I (Stacy) am extremely nervous about the C-Section. I know it is a very common procedure and I'm sure I'll be fine. I'm less nervous about the medical aspect of it, and more concerned about the psychological aspect. I'm terrified of the spinal epidural procedure (phobic of IV's/needles) and also very anxious since Drake is at such high risk and I will just have to be laying there. Prayer's for Jon's as well in this regard- strength and a calm spirit as he has to support his crazy wife who will probably be completely panicking, and as he watches his vulnerable son being born.
2) Peace for the upcoming days as we await for these final milestones and decision points before Drake is born.
3) Safety and good health for our family amidst all of this. Our parents are already here and others will be traveling to be here once the delivery is a "go".
Much love and thanks,
Stacy, Jon, and Drake Peterson