Update

13.6.16

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 ;)
#18 Weeks
#19 Weeks
#20 Weeks
#21 Weeks

post signature

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
post signature
*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)

Reviewing Monat

18.4.16

So let's talk hair for a minute, because if there's anything I'm a little crazy about it, it's my hair! I'm always on the hunt for the best products for my hair to keep it full and keep the length from looking scraggly and unhealthy! Especially when I'm constantly treating my hair and abusing it the way I do with hair dye!

Nike for the win!

13.4.16

Yay for hitting my second trimester this last week and finally feeling good enough to get back to a normal life! Back to actually cleaning my house, doing laundry, and yes, working out!

A New Week

4.4.16

Happy Monday loves! 
How the heck are ya? What's new with you? I hope everyone had a fabulous last week. I can't wait to share all about our fun weekend in San Diego and…oh hey! Remember that one time that I announced we were having twins?! Oh, wow! There is so much to talk about! Since being out of town and having a crazy week I haven't been able to get much up yet, but I have so much to tell you and talk about, so that will all be coming very very soon...

SURPRISE!

25.3.16

So, I've been keeping a little big secret for a while now! I was waiting until my first doctors appointment to finally share what I thought was exciting enough just thinking it was one little happy, healthy babe… well to my surprise we have even bigger news! Not only do I get to announce that I'm expecting this October, but we are getting not one, but TWO little bundles of joy!

That's right friends, TWINS! 

A hoodie dress for the win!

23.3.16

Oh Utah weather, how you toy with me! Last week I was sweating in this comfy sweater dress in beautiful 68 degree weather, then today, snow storm! So here I am, sitting in my heavy sweater and rain boots wishing the snow away.