Egleston consultation

   Today we had our consultation at Egleston with Dr. Kanter. He is the surgeon that will be performing the surgery on baby Murphy. I went in to the appointment not really knowing what to expect - but hoping there would be more clarity for some of the confusion/questions I still have in regards to, well, pretty much everything. I think I left just as confused as when I had first walked through the door.

   The day started as we (my mom, Josh, and I) headed down to CHOA Egleston around 2 PM. We pulled in the parking deck and saw signs that the parking deck was full (we were already cutting it pretty close to our appointment) and we had to drive around for a good 5-10 minutes before we were VERY lucky to find one relatively close to the elevators. Once inside there were TONS of people everywhere and we had to find our way to the Cardiac Outpatient Services (floor 2). We waited a few minutes on my aunt Deedy - she was meeting us there from work - and we were told we had to go back to the first floor for registration... so there we went. Upon getting to the registration table we were told they were so "busy" because the kids were coming down for a meet and greet with Justin Beiber. Not a huge fan - but pretty cool that he was right around the corner! Also, while we were registering we got to hear his private concert through the door of the room we were in - pretty neat. We then headed back upstairs to start our appointment and were taken to a little room to wait on Dr. Kanter.

   Let me start by saying this: this is my interpretation of the appointment based on all my emotions that are still running pretty high from previous appointments and the still newness of this diagnosis. Dr. Kanter came in and introduced himself and started talking about the surgeries that baby M will need - and guess what... it all depends! Both surgeries are open heart and depending on how his bronchi are affected the recovery time is up in the air because, you guessed it, IT DEPENDS. (This phrase still isn't growing on me...). Basically, if he is born and his airways are severly affected he will need surgery rather quickly and may even have to be transported to Egleston the DAY he is born (that hasn't really sunk in yet), but if his airways are not too affected he could possibly have surgery 5-6 months after birth. This means we would take him home after his is evaluated and we are discharged from the hospital. Many of you probably think I should be jumping up and down about this - and while it is relieving he may not need surgery right away, it SCARES me to death to take him home. Can't he just stay at the hospital and be monitored? What if something happens? Based on our meeting with Dr. Leigh on Monday it seems that the earlier surgery would be more than likely based on what they can see right now, but we are meeting with the pediatric cardiologist next week to hopefully get some answers to some pretty specifc questions we have come up with and also see how baby M’s heart is looking since we last went a few weeks ago.  We didn't really get any new information in regards to baby M but more of the information about the surgeries and what they entail.

   I left the meeting with Dr. Kanter pretty frustrated. His "bedside manner" was terrible in my opinion and he made it seem as if this was "just another baby with ToF APVS", but it isn't just another baby. THIS IS MY BABY. He just didn't personalize anything to our case, and openly stated he didn't view the echo that Dr. V (the pediatric cardiologist) had sent over ... well, okay then. I guess I expected that he would have spoken more in relation to my baby's condition and the report that Dr. V wrote up (like ALL the other doctors we have seen have done). I do trust his ability as a surgeon, but I think at my current state I was really hoping he would have been more caring and personal, and he really just wasn't. He is very confident in what he does, and I appreciate that, it really just rubbed me the wrong way today. After our appointment we were able to tour the CICU (Cardiac Intensive Care Unit ) and the Cardiac Stepdown Unit with a nurse - I think her name was Karen, super friendly. The CICU is where he will go immediately after surgery for 1-2 days (and where he will be monitored prior to surgery), and then he will be transferred to the Cardiac Stepdown Unit with his own room and we will be able to stay there 24/7. His time frame for going home depends on what I stated earlier, how affected his bronchi are from the pressure they were under in utero and the time out of utero before the surgery. It was nice to see everything and be prepared; we were even able to see a baby who had just had surgery. A little overwhelming because that will be baby M before too long, but I know he will be taken very good care of by the nurses/doctors/etc. 

   Over the next week I am going to take it easy and relax. Take some time to let everything soak in and go in to next week’s appointment with clear questions that we want answered. We got all of the nursery bedding and furniture this past weekend so I am hoping we can finish registering and pick out paint this weekend! My mom’s birthday is also this weekend and we are all going out on Saturday to a “secret location” (not sure why she is the one surprising us?!). I have several fun things to look forward to and I am going to try to keep my mind distracted for the most part.

   I am so overwhelmingly thankful for all you – all of your prayers, support, kindness and love. Baby M is loved by so many already and he isn’t even here yet! While the future is unknown for us and what exactly we are facing, I feel confident that you are all going to continue to surround us in your love and prayers and for that I am thankful. I am thankful for Josh. While I have been freaking out and overly emotional he has kept a level head and been the shoulder for me to cry on throughout all of my downs. I am also thankful for my mom – she has been by our sides at all of these appointments and has helped me keep a level head at times. I am thankful for my aunt Deedy for her willingness to come and listen in on all of these appointments and ask the questions that I sometimes forget. I am thankful for the friends that have reached out with their kind words of encouragement. I am thankful for the people, who don’t really know me, have reached out because they have dealt with a similar experience. I am working on getting back in touch with everyone, still taking some time to think about everything, but very thankful that so many people are willing to lend some advice and encouragement from their own experience.

   I will continue to update as time and appointments continue, and I will update from this weekend with a “positive post” and maybe some details about the nursery! So much negative deserves a positive post – both for all of you and I need it for myself as well. Over the past two days I have been drawn to this song:

Not For A Moment – Meredith Andrews

And every step every breath you are there
Every tear every cry every prayer
In my heart at my worst
When my world falls down
Not for a moment will You forsake me
Even in the dark
Even when it's hard
You will never leave me
After all

After all You are constant
After all You are only good
After all You are sovereign
Not for a moment will You forsake me
Not for a moment will You forsake me
Not for a moment will You forsake me

  I encourage you to listen to it if you can. I still have my questions and my fears as to wondering why this is happening to us, but I know God has such a great plan for Josh, Baby M, and I that this is what I cling to in my darkest of hours. God will NEVER forsake me, and He is ALWAYS by our side throughout everything. Psalm 27:1 “The Lord is my light and my salvation— whom shall I fear? The Lord is the stronghold of my life— of whom shall I be afraid?” It is a struggle to stay positive and let go of fears, but something I am working on. 

   Additional Prayer Request – I have been able to connect with a very sweet girl, Lacy, through this whole diagnosis and since posting my blog. Her son also has a heart condition, different than baby Murphy, that will require surgery. He was born today! Since the delivery they have taken him over to Egleston. I am asking that you lift Lacy, her husband Anthony, and their baby Josiah up in your prayers throughout the next few days as they prepare for his surgery and recovery. 

Love to you all,

Ashlyn