A little, actually a lot, about our last month...

1.6.16

Oh, boy. Where do I even begin…
I'm sure you've all noticed that I've been a little sparse with my posts since finding out I was pregnant a while back, then even more so once we found out we were expecting twins! It's been a good eight weeks of crazy news and a little mental/emotional chaos around here. Although finding out we were expecting twins was crazy news, we had no idea what else we'd be in for. We received more news that dramatically changed our lives this last month and this is the first time I've been able to try and put it into words without breaking down into a pool of tears so I figured I'd fill you all in on what's been going on...

I was headed in for my first MFM (Maternal Fetal Medicine) appointment on May 2nd. My OB had informed me, once we found out that there were two little munchkins in there, that we would most likely be seeing the specialists along with him throughout my pregnancy just to keep a close eye on the babes and continually watch their growth. Pregnancy alone can be unpredictable, but every time you add another baby into the mix, it just gets that much riskier, so this news was super comforting and welcomed to know that we would have multiple doctors continually checking on our special little babes.

At this appointment the tech came in to do the ultrasound, check babies growth, size, weight, the whole nine yards. She had been walking me through everything we were looking at and explaining as she went, after a minute she got quiet and a little more serious as she continually took measurements. After a few minutes she got up and said she needed to have the doctor look at a few things and left the room. Leaving me to wonder what in the world was going on, I just hoped nothing was too serious and that it was just an extra precaution. The tech came back in after a few minutes and said the doctor needed a few more photos of specific things, continued the ultrasound, then left again and said the doctor would be in shortly to speak with me. Of course, at this point I was building it up to be pretty terrible.

When the doctor entered the room, I immediately noticed the serious look on her face as she set her clipboard down, looked me direct in the eyes and said "We have some very serious things that we need to discuss about your babies". She went on to inform me that we were expecting identical twins, however our sweet tiny little babies were diagnosed with TTTS - Twin to Twin Transfusion Syndrome. TTTS is apparently a pretty rare disease that only affects identical twins that share a placenta and it is usually fatal to both babies if not treated. In TTTS, one baby is giving all of its blood/nutrients to the other baby through shared blood vessels that connect the twins. While the twin giving all their nutrients begins to get smaller and weaker with time and won't usually make it due to malnutrition, the other twin receiving too much is being overwhelmed with the amount of extra blood/fluid it's getting and the heart can't handle it. This sweet baby will eventually go into cardiac failure and won't survive as well. 
The doctor said not only is this disease very serious but that being so early in my pregnancy it was an extra scary sign that neither baby would be likely to make it (I was only 15 weeks 6 days at this time). She mentioned the possibility of a surgery that could possibly fix the TTTS, however we were not meeting criteria for the surgery yet and it was unknown whether we would end up being eligible for the surgery. Our only other options were to terminate the pregnancy (not an option for us), or wait and allow nature to take its course, and from what this doctor had told us, it could be days, it could be weeks, but our chances weren't looking great to keep one or either of our babies.

Hearing these words my heart fell, my world stopped. Everything felt like it was crashing down around me and there was nothing I could do about it. The feeling of helplessness as a mother and not being able to save my children or protect them killed me. My hubby and I were truly heartbroken and left our appt feeling completely hopeless. The next 24 hours straight were filled with nonstop research, contacting any and every doctor who would talk to us about TTTS and reaching out through Facebook groups and online resources to find others who had dealt with this issue and do everything in our power to find a way to fight this terrible disease.

The day we heard the news and the following few days were probably the worst I've ever experienced, but we continued to read success stories and hoped although our case was early and not ideal, we may end up being one of those success stories. The MFM specialists wanted to monitor me every three days because the disease can decline so quickly that it could be any day that it would be serious enough that we would have to rush for surgery. That Thursday things hadn't gotten any better, but also hadn't gotten much worse. Our smaller baby was losing fluid and the little bladder was not visible during the ultrasound. These are signs of TTTS, when the donor baby is continually transmitting all their fluid to the other, the bladder doesn't fill and create amniotic fluid which is what the baby lives in. If the bladder isn't filling and creating fluid, it starts to shut down, which leads to kidney failure, which leads to fatality. This was not great news, however we still weren't meeting all requirements to get the laser surgery done at this point. We went home and suffered through the weekend hoping our babies would make it a few more days until the next Monday appointment.

Monday finally came (literally, days feel like years these days) and we headed in for our appt at 9 AM that morning. After doing his detailed assessment on each baby, the doctor had me sit down for the results. He explained things had gotten progressively worse very quickly. We had gone from a Stage 1, borderline Stage 2 TTTS, to full blown Stage 4 TTTS in a matter of days. He informed us that "it was time" and we needed to get to LA as soon as possible to have laser ablation surgery done. We were informed that our recipient baby's heart was going into cardiac failure and it was a matter of possibly only days at that point. Within the amount of time it took for the doctor to call the surgeon's office in LA and let us know we could get the surgery done, we had found flights, informed our family that would be keeping Olivia, and were ready to go. We were able to get to LA quickly and head straight from the airport to the office in LA all within that same day. By the time we had arrived to LA, had another intensive ultrasound, and met with the surgeon himself, things had progressed and become even a little worse for our sweet babies. We were told surgery was the only option at that point to even think about saving these babies and we hoped they could make it through the night to get to the next morning at 5 AM for surgery. 

The next morning came, we headed in, had another ultrasound and there were two heartbeats! Surgery was performed and I was monitored in the hospital overnight. The doctor informed us that the surgery had gone as well as it possibly could have, however he also informed us that although surgery went well there was still a chance that the babies may not make it through the next 24 hours. He said if we could get through the next 24 hours we would have gotten through the biggest hurdle, the next milestone would be hitting 30 days after surgery, then making it to a "safe gestational age" for the babies to be born. Basically, even though we had just been through hell getting to where we were, we were nowhere from being "in the clear" and had a long way to go. 

That next 24 hours after surgery was another one of the longest days I've experienced where I felt it dragged on for weeks, but we made it to the next morning and when they wheeled in the ultrasound machine I felt like I didn't breathe for the next 10 minutes that followed. They immediately found two heartbeats and I felt like the weight of the world had been lifted off my shoulders. The relief and gratitude that came with hearing that this doctor had saved our babies when nothing else could be done was overwhelming. During the ultrasound they found that the smaller (donor) baby had already started to show slight improvement overnight and there was hope that both babies may still make it. We were discharged that morning and headed back to Utah within a few hours. A whirlwind of a trip but so incredibly worth it!

The next few weeks that followed surgery up until now have been nothing less than a continuous roller coaster. At every MFM appointment each week we are anxious and scared of what we may see or hear, however, we have a couple of little fighters that haven't given up yet and are doing much better than most doctors thought they would be a month ago! I may do another update with some of the other things that have been going on post surgery, but for now, I would at least share why I've been a little MIA and let all my incredible followers in on this crazy, but hopeful, journey that we are on. 

Through these hardships and feelings of grief I have learned so much already. I am so truly grateful for an incredible husband who has been my rock through it all, for an incredible family that has done nothing but rush to our side for support and love, and the sweetest little girl that has kept us smiling throughout all this chaos. We have already seen miracles happen and believe we will continue to see them happen right before our eyes. I have found so much peace and comfort in knowing what I believe and my faith and I am so grateful to be so blessed in countless ways. Thank you all for your love, support and prayers and I am truly grateful for all of you as well!

XOXO

These are just a few photos from our trip. It wasn't something we documented a whole lot about, but there were a few pictures that we took in hopes of looking back at it as a successful trip!
This was right after we had our 3 hour appt with the surgeon in LA and this was the "X" that marked the spot for where they would enter for surgery the next day. Oh, and hey little 16 week baby bump!
 5:30 AM we were at the hospital and within an hour were prepped and ready to go for surgery. 
 As insane as it sounds, these are actual photos of inside the womb of our babies. They used a tiny camera to navigate for surgery. I was able to watch the majority of the surgery since I wasn't completely put under and it was pretty incredible! You can tell the top photo is one of the babes' hands and the very bottom photo is one of the babes with their hand up by their face.
Those 24 hours spent in the hospital were pretty brutal, but I did get to meet sweet Maisy. She was a service therapy dog that came to visit me and totally lifted my spirits. It was such a cool service they provided for patients that had recently had surgery <3
 Dr. Ramen Chmait was our surgeon that performed the laser surgery that saved our babies. This man may never quite understand the incredible amount of gratitude we have towards him and what he's done for us!
Finally, my mom took this sweet picture of Olivia and I once I was home from surgery. It is one of my favorites! We all love these babies so much already and hope they make it to us safe and sound <3
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*If you are at all interested in learning more about TTTS or about the surgery we had performed, here are a couple of links that explain it much better than I ever could!

TTTS Foundation Page
LA Fetal Therapy (Dr. Ramen Chmait)

14 comments:

  1. Wow Robyn, I was crying through this post! You and your family are so amazing! Thank goodness for modern technology, and what a miracle and blessing it is. That picture at the end is so so sweet

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  2. Oh Robyn, I am so sorry for all that you are going through. Heavenly Father knows who you are and knows all that you are capable of. Even if you don't. You and your little family are in my prayers. And although we have never met, thank you for sharing your story.

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  3. You are pretty incredible and I couldn't imagine what you are going through. Of course I cried reading this, but your love for those little fighters is amazing. I admire your strength and will keep you and the little ones in my prayers.

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  4. Thank you for sharing your story-- praying for a safe pregnancy for you <3

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  5. Oh Robyn, I can't imagine what you have gone through... having identical twins myself, (you know them I think, Colt and Clint??) just the thought of losing one or both of them would have been life changing. I will pray for you and your sweet babies..

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  6. Thank you for sharing your story Robyn, I'm sure that was not an easy thing to do but you are a fighter just like your sweet babies. We are thinking about you and sending lots of love and positive energy to you and your family.

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  7. Oh this is so crazy! I'm sorry you guys have been going through all this, but you and your sweet babies are definitely in our prayers and our thoughts. I'll be sending nothing but good vibes your way.

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  8. Love you sweetheart. You may be able to help someone else with your information and courage. Have a good day and keep taking good care of my grandbabies. Mom

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  9. Omg Robyn I totally ugly girl cried at this whole post. My family is thinking of you and your family and praying. How incredibly scary. I can't even imagine.

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  10. I'm so sad and sorry you're going through this but am hopefully that everything will turn out well. I actually saw you and your hubby at the airport (without your daughter) and wanted to say hello but got a weird feeling I shouldn't (it was May 9th) so I wonder if thats when you were headed to LA. I'm glad I didn't say hello though with such a heavy thing on your shoulders. My thoughts and prayers are with you and your family!

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  11. Sending positive vibes your way! Thanks for sharing..

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  12. wow, what a crazy adventure you have been on. my heart goes out to you and your sweet family. you guys and your cute twin babes will be in my prayers! good luck with everything -- grateful for the update!!!

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  13. I'm so happy to know the surgery helped! I can't imagine what I would be feeling in the same situation! Every step in a normal journal is already stressful, thinking if everything is ok. Hopefully the worst is gone and your babies will welcome the world safely

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  14. You have cute family and love of pup with you is great.
    http://www.ootdchannel.com/

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