Stories of Hope - Jodie's Story 9

We had a long wait that day and I’d be lying to you if I said it wasn’t the most stressful time of our lives so far.  But I can’t stress enough that we were so full of hope, so sure that all was going to be fine.  We spent a great deal of time sitting around and waiting that day.  We definitely worried but we also planned...oh the boy toys we would buy in pairs Geoff said.  And oh the cute little outfit I had seen at Children’s Place would look so amazing bought in a matching set.  An identical pair of adorable little boys... we were so very lucky!

The surgery happened at 5:00 that afternoon.  I did not respond well to what was going on and had problems with anxiety attacks throughout as I drifted in and out.  I think I was just so overtired that my body was rebelling.  Because of this I needed additional mediation to keep me calm and still.  And because of that the entire procedure to this day is really a blur to me.  But Geoff was right there the whole time, holding my hand, reassuring me and watching everything that was going on.  The amazing thing about this procedure was that Geoff could see our boys inside of me.  He got to meet them before they were even born.  He watched them move and kick and even better he got to see them interact with each other.  Part of the procedure that ended up being done that day was completely unplanned.  Dr. Ryan, in order to disconnect all the vessels they shared in the placenta, had to make a hole in the membrane that divided their sacs.  This membrane was very thin and broke away.  At that time the coolest thing happened and I often wonder if they remember it?  Our stronger and healthier donor baby reached through this hole towards our sicker twin, his brother, his friend, who was definitely looking more and more sick.  Geoff said it was like he wanted to comfort his sick twin.  To this day when he tells this story he tears up… it was a life changing experience for him and bonded him forever with both of his twin sons.

After the surgery Dr. Ryan came to speak to us.  He told us that he was very confident that he had gotten all of the affected vessels and that there were, in fact, quite a number of them.  Dr. Ryan went on to tell us that when he had checked our boys at the start of the surgery that the fluid pockets had increased again and that our recipient baby’s abdomen was completely full of fluid.  This meant our TTTS was at Stage 4 and this was very concerning to Dr. Ryan. TTTS does not usually progress at such a rapid rate.  Usually you see this kind of affect when it TTTS has been present for a much longer time…when fluid levels are MUCH higher in the recipient and when the donor baby is much smaller than the recipient.  He said that this baby’s heart was also much sicker than before and because of this he would be sending me for a fetal echo cardiogram the following morning.  Even though he did tell us that our baby was very sick we continued to feel optimistic about their future.

I often have wondered what that whole procedure was like for my boys.  Could they see the scope, feel the pressure.  Did they know how worried their mommy and daddy were?  More than that, I’ve often wondered if our little recipient baby A felt as tired and sick as Dr. Ryan told us he was.  Was there pain in his chest, pressure, tightness?  And our little baby B, was he as worried about his twin as the rest of us?  Most of all did my sweet little men know how much their mommy and daddy loved them, hoped for them, prayed for them?  Did they know how much we wanted it to be okay, for them to be okay, for this horrible disease to never have affected them?  I know told them this over and over but I wanted them to know how much I loved them and how much I wanted them to be in my life.  I know I was pretty nervous at the start and couldn’t imagine my life with two little babies.  Now I couldn’t imagine my life without both of them.   Thankfully this surgery had eliminated so much of our medical issues and we were hopeful that we would go on to have an uneventful few months.

We returned to our room quiet and subdued.  I was uncomfortable and in a bit of pain…and so very stressed out. They had given the boys some medication to sedate them during surgery so that they would not move too much and interfere with the procedure.  This meant that they weren’t really moving inside of me and this was a feeling that was very uncomfortable to me.  I just wanted to feel my boys move, to know that they were okay.  

We spent time that night making more plans for our family.  We talked about how handsome these boys would be, how strong, how noble.  They had already endured more than many people do in a lifetime and this was sure to build strong character. 

Eventually we drifted off to sleep holding hands and once again I prayed that God would heal my sons and thanked him for the miracles that this amazing doctor and his team had performed that day.