What's Next & Baby's Name

My last post was left a little vague, I have had many of you ask me what's next.

We wait. Baby will be okay as long as he is still inside. He does not need lung or kidney function, or even amniotic fluid at all to survive in utero. Our hope is that I will make it to close to term. The further we get, the greater our chances of him surviving labor are and the longer he is with us. The last month of pregnancy has always been so miserable for me - but with this sweet baby boy, I will not want to ever end. He will likely live a few minutes, potentially up to an hour after birth. His lungs will remain at around 14-15 weeks development - enough to give him a few breaths of life, but not enough to sustain his body over any period of time, even with medical intervention. I find so much beauty in the fact that as long as we are together, connected, his heart will continue to beat. 

We are really doing as well as we can under these circumstances. We have felt a tremendous amount of love and support from friends and family. We feel peace and encouragement through your prayers, there is no doubt. I feel so honored to be able to continue to carry this sweet baby - I know that Heavenly Father needs him more than we do, but is giving us this time with him now until he is called home. It is such a privilege to be trusted with a spirit so needed in Heaven, and I truly feel a special connection with him already that I pray will continue to strengthen throughout this pregnancy.

It is hard, for sure. I cry, a lot. But, I also continue to feel the peace that I have felt so strong through this entire process. I can talk about the baby in normal conversation now and actually really appreciate the questions that people ask - I don't like hiding or ignoring what is happening just because it is a hard topic.

Although it is a very different emotion than I have ever experienced, I am glad that we have this time before delivery to grieve. It may be months until our little guy is born and I hope that by the time he comes I will be prepared to be able to take in the all of the beauty and joy of those few moments that he is with us because we have already processed what is to come. 

So for now - we wait. I will continue to go to regular OB appointments, perhaps a little more often than normal to check on baby's heartbeat. With no fluid, there is a greater chance that his umbilical cord could become pinched resulting in early loss of life. We will start planning for delivery, which presents its own complications due to baby's belly size. And, when we are ready, we will start discussing the details of baby's burial. I'm not quite ready to pick out a casket or burial plot for my own baby. But, that time will need to come soon. I want to make sure that everything is prepared before he comes so that we will not have any extra stress while we continue the grieving process after he passes.

We usually don't name our babies until they are here, but this little man needed one sooner: Jude Robert Babayan. Jude, because it's the cutest little boy name. And Robert after my Papa in Heaven who I have felt has been with Jude, by his side, in all that he has already endured. 

Again, we cannot thank you enough for your love and prayers. I will continue to occasionally update this blog as the pregnancy progresses. Love you all. 

Colorado Children's Hospital - Surgery #3

It's hard to write this post, but I know many of you have called and texted this morning to see how surgery went. We were unable to have the shunt placed, because it appears my water has broken completely. They attempted to insert fluid twice and it just came right back out. Because there is no fluid, the shunt could not be placed. Even if they were able to place it - it's job of cycling fluid through would not be successful because the fluid would come out anyway. 

I do believe that miracles happen, and if I am somehow able to partially reseal and retain fluid and baby's bladder ruptures again to allow the fluid to pass from his bladder into his belly and through the existing shunt - we may be able to hold on to him a little longer. However, it is more likely that we will be sending him to his Heavenly home soon. Because there is no other intervention that can be done, we will head back to Utah in the morning as long as I do not go into labor tonight. 

Thank you all for your continued love and prayers for our family. I will write more once I have had time to process a bit. As much as my heart aches, I feel surrounded by the Savior's love and peace - and I know whether in this life or the next, we will be with our sweet baby boy. 

Colorado Children's Hospital - Day Seventeen

Our ultrasound yesterday showed baby's bladder filling again - which I was hopeful that it would show. We were not sure if the rupture in baby's bladder would continue to leak into his tummy, or if it would heal - as it appears it has. Because his bladder is full, we are able to reattempt surgery to allow fluid to pass from his bladder into the amniotic sac.

Unfortunately, our surgeon, Dr. Crombleholme, is in France for the next couple of weeks at some kind of Baby-Saving Conference for Incredible Fetal Surgeons, so we are not able to reattempt the stent - because it's kind of his thing based on his own experience and research. So instead, tomorrow morning we will place another Harrison shunt (like baby has going into his tummy) into his bladder as well. The fetal surgeon performing the operation was in our first surgery, but I don't really remember him well due to the sedation during the operation. He grew up in Provo though, and his mom taught at BYU for 25 years - it was fun to make that connection with him.

I am still very hopeful that everything will go well. Placing the shunt is very straight-forward and they have done it many times, so I am not worried about its success. The only major drawback to the shunt is that it will likely need to be replaced a few more times - because it can easily be pulled out by baby. It's possible that if and when we need to replace it we will have the option of the stent again at that point. However, if we make it through the pregnancy with just the shunt - we will be able to deliver at Primary Children's in Salt Lake instead of coming back here to wait to go into labor and deliver. Either way I am sure it will all work out how it is supposed to, and we can really only continue to take it one day at a time at this point. 

I am nervous for surgery tomorrow, just because that's what I do - but I do feel very confident. We will check in at 5:30 with surgery at 7:30 - which, really is the best time because I am not hangry yet but still tired enough that the sedation puts me to sleep quickly. If everything looks good after, they will probably keep us until early next week and then I can go home and see my other baby!!!

Colorado Children's Hospital - Post-Op

Last night I started leaking fluid again. It was quite a bit, but I tried not to think too much of it - last time when it happened after the first fetal surgery was one of the hardest nights for me, and everything turned out to be fine. Vahe and his friend were able to come and give me a blessing last night (a special prayer for the sick in the Mormon faith) and I was overwhelmed with peace and reassurance after. So, while it is definitely our biggest concern right now, we are continuing to hope for the best and just doing everything we can on our part (bed rest aka torture) to allow for healing.

The doctor said that the amniotic fluid could be leaking from the new incision, but its likely that it actually came from the last - which opened back up once the uterus was full again. The uterus is actually not able to heal itself, rather, its walls are made up of two different layers that can shift in opposite directions. When the incisions in both layers shift away from each other, it will temporarily seal. But, he expects the extra fluid inside could have stretched the incisions back on top of each other.

Our ultrasound also showed that baby's bladder looks like it has healed. The little goob didn't even wait 24 hours after surgery to need another one again! Because the bladder was still leaking through the rupture, they could not place the shunt all the way through - right now it only goes from baby's belly to the amniotic sac. So, for now we will continue to watch and wait. Our surgeon thinks that since the bladder has ruptured twice before it is possible that it will just continue a cycle of filling and rupturing again on its weak spot. Baby would be ok in that situation, he will need surgery on his bladder at birth regardless, but it does continue to put a lot of pressure on his kidneys every time it fills. If it does heal all the way, or at least to the point where it can maintain fluid for another surgery - then we will be back under.

I hope that this shunt will tie us over for a few weeks. As much as I just want to go home, I really hate having these surgeries so close to one another. Especially when it comes to keeping baby cooking for as long as possible, having so much done in so little time is concerning to me, for sure. But we will continue to just take it one day at a time until we know the next step. I do hope that eventually we will have the opportunity to retry the stent because it is a more permanent solution, but only time will tell at this point.

We will go in on Monday and reassess from there. There is really no expectation of what we want to see with baby, because there are really so many variations of what could happen. Our biggest hope right now is that the fluid leakage stops, which I expect it to. Whether this happens before or after I go crazy from laying down all day is unknown. :)

Colorado Children's Hospital - Surgery #2

Vahe and the girls got in early this morning. It is so good to have them here. They were in heaven over at the Ronald McDonald House - it is completely geared toward kids so they loved exploring the toy rooms and multiple play houses and little kitchens. They also have a big room with hundreds of movies and games you can check out, and lots of Disney and cartoon statues and stuffed animals all over. They told me this morning it was the best day ever. Maybe I should just tell them it's Disneyland to get that out of their system? ;)

Surgery went well today. Since our surgeon is "Surgeon of the Week" he has been on call to perform all of the needed emergency surgeries at the hospital for the week, and has been a busy man. He says the title sounds like it should be a honor, but it actually just means you have to work more. Haha. I seriously love that guy. He is the most soft-spoken, but hilarious and kind man. The first time I met him I went in for the hug (how could you not hug the man trying to save your baby?!) and now he gives me one each time he sees me - it's the best. The world would be a better place if it had more people like him around. 

So, because he was so busy we got started a little late, around 1:30. I actually only had a minor meltdown in the operating room this time, I was much more anxious leading up to it - probably half because there was so much anticipation in waiting so long,and half because I was a seriously starving pregnant lady. I get a little irrational with the combination of high hormones, low blood sugar and without my morning Diet Coke. 

I was hoping that the anesthesiologist would let me skip the spinal this time and just up the sedation instead. The pain really doesn't scare me at this point, it's just the high anxiety of the risks, the survival of our baby, that makes me so emotional each time. I suggested it, and he actually said he wanted to do a spinal-epidural combo, which I wasn't too excited about. But I trusted his advice and went with it. 

The anesthesiologist tried to place the epidural twice in the operating room and couldn't feed it in (not the highlight of my day) and so ended up just going with the spinal - which I think he wasn't the best at either because I completely felt the needles going in both my belly and uterus, just had numb legs. I'm sure it took the edge off, but I don't think it was really worth it in the end. He also didn't give me as much sedation, probably because I was a little more in control - but I remember asking him every few minutes if the baby was okay. So, I'm pretty sure he was tempted to slip a little more in my IV when I wouldn't stop talking. 

The surgery itself went as anticipated. They were able to do the amnio infusion and place the shunt in the same incision. Baby's belly was so incredibly massive this morning before surgery, I wish I had the ultrasound to post. It was so big that it filled the uterus to nearly the size it should be - but, with no surrounding fluid at all, just all in his tummy. After placing the shunt, the surgeon said that his tummy decompressed very quickly and the fluid easily went out into the amniotic sac. I can't wait to see him on the next ultrasound, I can only imagine how much happier and more comfortable he is now. I have even felt him kick a few times - which I very rarely have before because he has had no room to move. 

It was so nice to come back to the room with the girls here, I have missed them so much. They had colored me all sorts of pictures while in surgery, they both have the cutest little gestures of love. I was still pretty drowsy coming back to the room, but just having them there waiting for me made all the difference.

So now, another waiting game. There is a tremendous amount of stress lifted now knowing that, even if temporary, baby has everything he needs to thrive for now. Because the bladder walls have thickened so much from the stretching, it's possible the rupture will never heal in utero. If this is the case, the current shunt could tie him over until delivery. However. If his bladder does heal, or is the shunt comes out, which is likely - we will be in again for another operation. I'm hoping that the current shunt will do its job for at least few weeks though so both baby and I can have time to heal - and maybe if everything is looking okay I can even sneak back home for the weekend for Arie's first birthday and Father's Day. I miss that baby boy more than anything. 

Thank you does not seem adequate for expressing my appreciation for your love, support, fasting and prayers. It is hard to explain the feeling, but I really have felt the prayers said on our behalf and know that angels have been surrounding us, reassuring us with peace at this time of uncertainty. I believe that these sweet babies have such a special and intimate connection to heaven still, and I know our baby boy has felt that love through each prayer - strengthening his fight to come to our family. Thank you for giving him that courage through your faith. Please continue to keep us I your prayers, I know that this journey is far from over for our family - but am hoping the heartbreak is behind us. Love you all.

Colorado Children's Hospital - Day Eleven

God is certainly teaching me that this is all in His hands, and in His time. All I feel is left to do is just trust in Him, I have absolutely no control other than choosing to fight for this baby boy.

Our ultrasound this morning showed that baby's bladder has still not healed, there is no amniotic fluid around the baby, and his tummy is full of a massive amount of fluid, or ascities (a fancy term for fluid in the belly). There is so much fluid in his belly right now that it is actually displacing his heart. The bladder shows urine inside, which is good and indicates kidney function, but it is escaping into his body through the bladder rupture. The bladder walls are so thick from being expanded that they are not really sure if the rupture will even heal at all- which, isn't necessarily a bad thing, just another unknown.

The sonographer also pointed out baby's oblong head shape today - which I had noticed before, but assumed that was just the normal shape of the head this early on. She said that it is normal for low fluid, and chances are it will round out before he is born, if not after.

So, at this point - we are going in tomorrow for surgery #2 of who knows how many. Because the bladder is still decompressed, they cannot place the stent all the way through. So, for now, they will place the 1mm shunt just through baby's belly to allow the fluid to drain out. They will first do another amnio infusion (squirting a small amount of fluid into the uterus) to give them a little wiggle room to move once they are inside. Otherwise, his skin is literally right on the uterus, and they need to be able to have that space to adjust their position slightly once inside. Last time they did the infusion the day before, but because the risks are getting higher each time they disrupt the uterus, they are going to just do it in one shot this time.

It's possible this could be a permanent fix until birth, but it is more likely temporary. The shunts need to be replaced an average of 2-3 times per pregnancy, and if baby's bladder does heal - we will need to go back to Plan A and place the stent all the way through. 

So, for now we will have a temporary fix to push fluid out of baby's belly into the uterus. It will still take a little pressure to push it out, but as long as we can decrease the ascites, baby should be ok. The good news is the kidneys are still doing their job - and since there is no back-up in the bladder, they should not be negatively affected any further. 

We will likely still be here another few weeks to few years. I've stopped trying to guess. At this point I honestly wouldn't be surprised if we were here until delivery, and then who knows how much longer after in the NICU. It truly is a blessing that we are even here, that we are given the chance to fight, and I know we are in the best hands possible. 

Vahe is bringing the girls tonight, I can't wait to see them. I have missed them so much - they both bring so much love and joy to our family. Arie will stay home with Grandma. Just over FaceTime I feel like he has doubled in size over these last two weeks. His first birthday is on the 21st and I can't believe I will probably be missing it, it kills me. We might just have to have a very belated birthday party for him - he won't know the difference, right?

Colorado Children's Hospital - Day Eight

Not much to update, which I suppose is a good thing. This weekend went well, we met up with my cousin that I haven't seen in years on Saturday. It was great to meet up with him and catch up a bit. Then on Sunday we went and had dinner at one of Vahe's old mission companion's house with his family. They have the cutest two kids ever, it was fun to be able to talk princesses and tea party for a bit. ;)

This morning we had an ultrasound and everything looked how we expected it to. Fluid levels are dropping again, but there is still enough that we were at least able to find a few pockets. It seems as though the incision in baby's belly has healed - there was a lot of fluid in his tummy, but the bladder is still small - suggesting the bladder itself, either from a rupture or from the incision, still has not healed up.

We will not go in again until Thursday - hoping at that point to see baby's bladder filling again so we can plan for reattempting the surgery. The more I think about it the more frustrated I am that the first surgery failed. With each procedure, the risks grow much higher, not to mention just the time and stress of waiting. It's just hard for me to think that if it had been successful last week, I would be back home with the kids in just a few days and have so much less to worry about. But at the same time I know that our doctors and surgeons are doing all they can to give our baby a fighting chance, just like we are. It was our choice to opt for this new surgery, and while I still feel it's a much better alternative, its hard to be the guinea pigs!

We are guessing that if all goes well, that we will be reattempting surgery next Monday. If so, Vahe may go get the kiddos over the weekend and bring them here. At first we were hesitant to bring them in case the outcome does not turn out as we expect - but, even if the worst happens - I can't imagine any better healing than to have them here. Of course we are still very hopeful and feel everything will go ok - in any situation I just can't wait to squeeze them! I know that anticipation will help me get through this week so much easier!