"it depends"

I don't even know where to begin with this post, but I am warning you that this is raw emotion and very real to what I am feeling and experiencing right now. We had a consultation with Dr. Leigh at Gwinnett Medical, he is the neonatologist that I posted about in an earlier post. I knew going in to this that we would be getting much more information in regards to baby Murphy's diagnosis, and much like our appointment with the maternal-fetal specialists, I went in not really knowing what to expect. My mom, Josh and I met with my aunt Deedy and Dr. Leigh around 6:45 PM tonight in the NICU at Gwinnett Medical in one of the "mother's rooms". Nothing could have prepared me for what Dr. Leigh was about to explain to us, nor how I would feel after it was all said and done.
   Dr. Leigh is a great doctor who really put things in to lamens terms for us, and I will try to do my best for you who are reading this. We had a few good laughs while interacting with each other, I think they were more for me to hold back my tears. Dr. Leigh ranked baby M's diagnosis (Tetralogy of Fallot with Absent Pulmonary Valve Syndrome) on a scale of 1-10 - at a 9.5 in regards to severity. He had read my file from Dr. V (with my permission) and discussed some of the things that would happen after he was born. I think based on our preliminary appointment with Dr. V I was somewhat under the impression that this would be fixed with one surgery and that would be the end of it, but not so much. Dr. Leigh explained that there were several serious risk factors associated with ToF APVS. He also said that it can go several ways after birth, but there are some things that just could not be corrected if they occur. There are only few things we can know for certain based on the in utero ultrasound on his heart, but many that are unknown, and when I ask questions about them I get the response "it depends". (Words can't describe how tired I am of hearing this answer).
   There are several things that we will have to wait until after the baby is born to look at, and they literally start looking at him RIGHT after birth. I mentioned before that I wouldn't get to hold my baby, but there is a pretty big chance I may not even get to see him at all before his is whisked to the NICU for testing and everything else. Josh and I also have to decide if he will stay with me or going with the baby to the NICU. This makes me so so sad, but I know it is the best thing for the baby and that is what I am clinging to at this point. One of the main concerns is the pressure that will be put on his trachea by the swelling/enlargement of the pulmonary artery. If the pressure is too much he will need to be intubated and be on a breathing machine to keep his trachea open despite the pressure. There are other issues related with this - if the pressure is on the main bronchos there is not much they can do at that point. He will also need to be on a constant IV of medicine to keep a hole open in his heart that normally closes after birth in 24-72 hours for healthy babies. It is PERTINENT that he get the medicine ASAP to keep this hole open before it closes so he can get oxygenated blood to his body. The timing of surgery and which surgery will all "depend" on when he is born and what the initial overview looks like. They gave me different scenarios but I am not listing them out here. 
   After Dr. Leigh left my aunt Deedy explained things a little bit better, and for the most part I was able to hold it together. I am not sure what we were talking about but there came a point where I just lost it. I want to know why this is happening to me. I want this to all go away. I want to know beyond a shadow of a doubt that my baby is going to be okay, and that he is going to live. I want them to give me the answers to exactly what is happening. This fear inside of me is growing and I am just so numb. I don't know what to feel or how to deal with this mix of emotions.
   Let me say something - I have very much appreciated everyone reaching out and praying for us. I do ask that over the next few days you do not say that "it will all work out" or "it will be alright". I know it comes from an honest heartfelt place but I am not at a place to accept and deal with with this statement. Because right now I don't feel like that, and it does not make me feel better to hear other people say that - sometimes it makes me feel worse. I apologize in advance for not responding to calls/texts/etc, but I just need some time to be by myself and with Josh. I need time to, again, sort through these emotions. This week is going to be especially tough. We meet with the surgeon on Wednesday, talk about a double whammy. It took me two weeks to be able to discuss anything after our last appointment when we received the initial news, and now the information we are presented with is more in depth and more serious than I really was ready for. And now I have one day to collect myself and get ready to be hit with it again. 
   I will be real here - I am struggling to trust God with all of this. I know He has a plan, but I don't like this road I am on to get there AT ALL. I am glad He has surrounded me with a wonderful husband, family and friends because I cannot do this on my own. I am so broken right now and I just want to be okay. I just want everything to be okay. It's hard to feel like no one really understands what you are going through, but I hope this has put it somewhat in to perspective.
   I am thankful that Dr. Leigh took the time to meet with us. This information was just so overwhelming. He made the comment " we do this in stages" or something like that. I understand because I would not have been able to handle this at the first appointment. But I am also frustrated. Frustrated because I have no control. Frustrated because we just DON'T KNOW. Frustrated because it almost was made out to seem "not so serious" initially. Frustrated about everything.

Thank you all for your prayers and I ask that over the next few days you pray specifically for peace and comfort for Josh and myself. Also strength, strength to hold on and strength to see the light at the end of this dark, very dark tunnel.


"with a mighty hand and outstretched arm; His love endures forever." Psalm 136:12