A little update on what's been going on this past month or so...
First, I guess I should start with the good news! We hit our 30 day post surgery mark a week ago tomorrow and we were thrilled! Those 30 days were stressful and scary at times, but overall I have been feeling well, have no pre-term labor signs and have basically been on bed rest to allow these babies the best opportunity to grow, grow, grow!!
Now for those that are interested (also, this is partially for me since this is a little bit of my online journal that I will look back on, so I may write a little more than maybe you all want to hear) this is a little bit about how all those appointments and weeks have gone…
Our first appointment back after surgery was the week after and we were still a mess. Although surgery had gone well, we knew there was still a good chance we could walk in to any of our upcoming appointments and not see both heartbeats. We also were really nervous to see if there were any changes at all to the stabilization of either or both babes. During that appointment the specialist told us that Baby B (donor baby) had made a pretty great turn around- a healthy amount of fluid in the sac, bladder and kidneys were looking better and besides being significantly smaller (about 30% smaller than the recipient twin- a big difference for identical twins!) Baby B was looking much better than the previous week. However, Baby A was not in much better condition. The hydrops (water in the abdomen and around the skull) had seemed to not completely go away, but definitely looked significantly less, but the effusion (fluid around the heart) was still a scary amount and that meant the heart was still struggling to do its job. The heart was significantly struggling and our doctor didn't seem too positive about it making a full recovery. We had been told by our surgeon that the heart would take the longest to heal and to give it at least 4 weeks to see any change or improvement, so even though the specialist didn't seem very positive, we still hoped that time would hopefully allow the heart to stabilize and start to function at a healthy level. Our specialist said we definitely needed to be getting in to see a cardiologist at Primary Children's Hospital to have a fetal echocardiogram done on the recipient baby. He sent in the order that day and we left again, feeling a little defeated and anxious about what the next week would bring.
Week #2 appointment came and we were back in to the MFM specialists office. We're basically on a first name basis with most of the staff at this point and have been in for about 13 ultrasounds so we're getting used to the drill. We immediately saw two heartbeats and were relieved for about 5 minutes, however after speaking with the doctor, we continually got the same message. Little to no improvements. Baby A (recipient) was still struggling quite a bit and the fluid around the heart hadn't seem to have changed or gone down at all. On top of this, the doctor seemed to think there may be some other issues including a possible narrow pulmonary artery, the right ventricle functioning little to nothing at all, and a few other big concerns but he didn't dare diagnose since he was specialized in cardiology. We were scheduled to go in to see the cardiologist two days later so he said he would be interested to see what they had to say. On our way out, he said, "well, at least if the one doesn't make it, I'm pretty positive that the other one will!"
I about died inside. I know he meant nothing malicious by that comment, but I kind of wanted to punch him and tell him that didn't make me feel ANY better at all. But thanks. It did give me that much more of a desire to prove all these doctors wrong and show them that my babes were tougher than they even knew!
Two days later we were up at Primary Children's and in for our 14th ultrasound. This ended up being a THREE hour appointment, two of it being straight ultrasound to get extremely detailed measurements, dopplers, blood flow to and from umbilical cords, blood flow from every part of the heart through each artery, etc. The tech was fantastic and kept us light hearted and laughing during the ultrasound (I can only imagine how anxious everyone in there is, and I'm sure they know that!) but let's be honest, we were nervous the whole time awaiting more "news".
The cardiologist came in a bit after the ultrasound was over to do a little looking himself, explained a few things, then told us to go ahead, get cleaned up and head into another room to chat about what they found. More sit-down chit-chats about how sick my babies are….awesome.
They took us into a room where they had a social worker prepared to meet with us. She informed us that she was there to let us know that it was okay to feel the way we were feeling and to help us through the things we were about to hear. At this point I didn't think they could tell us anything worse than what we had heard a few weeks prior, but who knew! A few minutes later in walked the cardiologist and three other researchers/doctors - basically a whole health team! He began explaining that Baby A (recipient) was clearly very sick. He said that due to the amount of stress the heart was under and the blood volume that the heart was having to pump, the heart had become very "dilated" and thick specifically in the right ventricle. Due to the thickness in the right ventricle, it doesn't function properly giving the muscle enough pressure to pump the blood up through the artery to send blood to all the parts of the body needed. This in turn means that the blood that isn't pumped through the artery is "regurgitated" back into the body creating the fluid around the heart that we had been seeing on the ultrasounds.
Trust me, I've learned an insane amount of anatomy during this whole process!
It's all very confusing, but basically, the heart is inflamed, it's not doing it's job, and it doesn't mean good things for a fetus when only half the heart is functioning (and even that half is still under stress!) Fortunately, at this point, this was not actually the worse news we had heard, we knew it wasn't good, but again, had heard much worse and kind of had an idea of what was going on. We still hoped that the body would do miraculous things and allow the heart to return to a healthy enough state to give our babe a chance! I specifically asked the cardiologist at the point his honest opinion of whether or not Baby A would make it. He was honest in saying that had he not known where we came from two weeks prior, he would have looked at the baby and said it wouldn't make it, however…knowing the severity of what we had dealt with, knowing that we had the surgery and knowing that there had been even slight improvements like the lessening of the fluid in the abdomen and head, he was hopeful that it would continue to start looking up and that even if there were issues at birth, that they would be things that they could perform surgery for. He did say it was still about a 50/50 chance Baby A would make it to delivery and there was really nothing they could do medically to help with the inflammation of the heart, it just had to resolve on its own. They wanted to continue watching things each month and that we would hopefully have better news next month.
We left feeling about the same as usual.
Week #3 appointment for the MFM specialists rolled around again. The tech started us off, found two heartbeats and did the usual ultrasound. When the doctor came in, he placed the wand down and immediately found Baby A. After finding the chest and heart on the ultrasound his face dropped and he said, "Oh no, do you see that?" Both of us stared at the screen at our little baby with barely no heartbeat. It had slowed to almost a stop and for about 10 seconds (which seemed like a lifetime) we watched and thought we may literally be witnessing the worst thing we could imagine right in front of us. The doctor moved the wand a little and then came right back to the heart as we noticed it pick right back up to a normal speed. We were in shock…seriously, WTF just happened?! Our doctor then explained that even in completely healthy babies, sometimes they will hit a nerve or push too hard and it can cause the heart to do that exact thing. Once the pressure is off, the heart returns to normal. He felt terrible once he realized how bad he scared us and that I was physically shaking and apologized saying that he shouldn't have said anything and had watched it before mentioning it. He kept saying it truly was completely normal and didn't mean anything, even though we were a little bit of a wreck the rest of the appointment.
In the end, things looked stable and although not much different, our specialist seemed slightly more positive this time around (even with our scare!). He said that although there aren't giant improvements, the fact that Baby A was staying stable was a good sign and it gave him more hope that they would make it to delivery.
Wait, what?! Did they just say something positive to us?! Mind. Blown.
Week #4 appointment was our most recent appointment. It marked our 30 days surgery and I was more anxious for this appointment than any previous appointments. For some reason I had a pit in my stomach that felt the size of Texas and I couldn't put my finger on it but I kept thinking for some reason that something would be wrong. We had come so far and I was almost prepared to be devastated.
The doctor came in and found two heartbeats (yay!) and did all his usual measurements. He said everything was looking pretty stable and similar to past weeks, however he was noticing some slight improvements in the blood flow to the liver as well as possibly a slight less amount of fluid around the heart. He said the dopplers were showing a little less "regurgitation" which meant the blood was flowing a little better. Those tiny improvements were enough to make my mama heart burst! Because I had been so nervous about the appointment, I was so overly grateful to know that my sick feelings were all in my head and that these babes were continuing to fight so hard! He again told us that he was glad to see stability and even slight improvements. Still a lot to be concerned about, but that we were at least slowly heading in the right direction.
I honestly left this appointment feeling more positive and blessed than I ever imagined. The second I got home I dropped to my knees (carefully ;)) and thanked my Heavenly Father again and again for these two little miracles. I know that at this point we are in no way "in the clear" with these two, but the fact that we have made it as far as we have and seen our little fighters make it week to week, I am so hopeful for a positive outcome! Either way, I take so much comfort in knowing we have done all that we can and that this is truly out of our hands. We will take what comes our way and always stay faithful that it is meant to be!
I am continually floored by all the love, thoughts and prayers coming our way from all of you! I have had so many people reach out and take time to let me know they were thinking and praying for my little family. I can't describe how incredible it feels to know that people truly care about us and these sweet babes! Thank you again from the bottom of my heart! Love you all!
These are just a few "bump" photos over the last few weeks to show it off ;)