I haven’t been able to really make sense of my heart since the day you were born. I have really been trying to stay very strong for you, but there are a lot of times when I feel very sad. Even after all the time I stand with you and rock you as you sleep, the time away from you feels like aeons passing by. My heart feels so distanced from myself, and in pieces. I feel so separated from my sweet boys and I just want to hold you both and make everything alright, but I know that what we are dealing with takes time. Time and lots of strength. I am going to be strong, for you and for your brother. I am going to be strong for your daddy. God knows I am weak, but His strength will be my guide.
You have been taken back in to surgery, and it’s been several hours since we last saw you. There have been a couple of updates on your progress; a nurse called us a few hours ago to let us know that they had put in a central line IV and that they were about to prep you for your PDA division. The central line is a more permanent IV that will allow your anesthetics to flow without interruption of blowing out other IVs or them falling out. This is needed for reasons that you will still need your IV nutrition after surgery whether they are able to fix all issues or not. The PDA is a Patent Ductus Arteriosis. This is a congenital heart defect that they found during your scans, which is a condition that occurs after birth when the ductus arteriosis blood vessel does not close itself off. The PDA can lead to abnormal blood flow between the aorta and pulmonary artery. They really need to divide your PDA so that they are able to get in to repair your esophagus, but also because it could cause problems down the road for you with your breathing and growth.
You also have a right sided aortic arch, which means that your main artery, the aorta, is on your right side instead of your left. This is a very rare occurrence in about .1% of the population. With this condition, a vascular ring is in many cases present, and in your case this is true. You have a vascular ring circling around your trachea and esophagus.
Out of all these things I have told you so far, the TE Fistula that we have known was likely something you would be affected by, is the biggest issue that you are dealing with at this time. This fistula that I tell you about affects you so much, because you cannot swallow anything. Your esophagus did not form completely, as you have two parts which do not meet. Your surgeons’ plan today is to sew the two ends of your esophagus together so that your food and fluids flow to your stomach, and you are able to eat. If they cannot get the esophagus close enough together to be able to complete surgery today, they will be required to put in a gastrostomy tube (a feeding tube) through your stomach, allow you more time to grow and stretch, and try this surgery again down the road. If all goes well today and they are able to complete the surgery, you will have a tube placed down your throat in to your stomach for a whole week. Within a week, they will do a contrast study by allowing a small amount of dye to run down this tube in to your stomach. At the incision, if no dye leaks out, then they can take the tube out and allow you to start nursing. I have really been looking forward to that day.
All these words are starting to make sense to me, but I am no doctor and it has really taken me a while to picture the problems you are facing. It has been the hardest of all to sit around and wait.
I have been feeling helpless.
But we will wait. And God will give us strength.
Rest well, my love, and we will welcome you when you wake up.