Wednesday, June 24, 2015

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. 

Thursday, June 18, 2015

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. 

Wednesday, June 17, 2015

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!!!

Saturday, June 13, 2015

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. :)

Friday, June 12, 2015

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.

Thursday, June 11, 2015

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?

Monday, June 8, 2015

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!

Friday, June 5, 2015

Colorado Children's Hospital - Day Five

We went in for an ultrasound this morning, I was so nervous. At this point we really didn't know what was going to happen - no fluid around baby again could mean my water had actually broken, and that we would wait for labor or even need to induce depending on the circumstances. 

Baby looked great. His heart beat was a strong 140. The night before it had been in the 190s, which they were worried about. I believe his high heart rate was due to him feeling my stress of believing we had lost him at the time. Baby's bladder was still decompressed, but did have a little urine in it - which is what they expected to see. The best part was that he was swimming in more fluid than he ever has - still extremely low levels, but enough that we could actually find a few pockets. So, for now everything is ok - baby has the fluid he needs, and it is getting out into the uterus most likely through the incision holes. 

The surgeon came in to talk with us. He said typically the incision in the belly will heal first, while the bladder takes a while longer because it is continuously contracting. Once the bladder incision heals and becomes large again they will assess attempting surgery again. 

He also told us that they are going to change the technique of placing the stent. Instead of using a 1.2 cm stent - they will use one that is only 6 mm so that they can pass it through the same instrument they use to both make the incision and that the camera is in, rather than having to take it out. I assumed this is how they did it before but I guess they had to actually use a different device to place the stent. So, even if the bladder does decompress using the 6 mm stent, they will be able to fill it back up and place the stent in one shot, eliminating a step (the one that made surgery unsuccessful last time) altogether. 

I actually feel really good about the 6mm stent - it seems big enough to do the job, and puts a hole half the size in our little man. It is a little frustrating that it is not how the surgery was initially attempted, but I have full faith and trust in our doctors and surgeons and know that they are doing everything that they can to make this successful. Because this is the first time it has been done, it is only understandable that there have been little hiccups. 

It was so good to leave the hospital with good news today - especially since we won't be back again until Monday morning. If everything goes well and according to plan (which seems like a real funny joke now) we will reattempting surgery next Thursday or Friday.

We are so grateful for the miracles, great and small, that we have been experiencing through this journey. We feel your prayers and thank you for them, it is the faith of those around us that are helping us keep ours strong. We know that regardless of when or how long baby comes into our life, that he has already been a great blessing to us. 

Colorado Children's Hospital - Post-Op

Vahe left yesterday afternoon to head back to be with the kids and get a little work done. I had not had one contraction, and so we assumed everything was ok. I couldn't sleep that night - so finally after sneaking off my compression socks and boots I nodded off around 12:30At 1:30 I woke up wet. Embarrassed, I called the nurse in - assuming my catheter had come out and spilled a bit. She checked, and told me that it was still in fine. She looked at me and I immediately knew what she was thinking - I went into shock and couldn't breathe. A great risk with these types of surgeries is your water breaking and going into pre-term labor. 

After the nurse calmed me down a bit she called in a sonographer who checked on baby, my cervix and tested the fluid. Since there had been very little fluid to begin with, even after the amnio infusion on Tuesday, they really had no expectation of what they wanted to see. There was still a small amount of fluid around the baby, which was reassuring, but again did not indicate anything. My cervix still looked good, they couldn't see any pooling inside, but the test did come back positive for amniotic fluid. They told me that my water had broken, told me that it was not my fault and kept hugging me and telling me they were sorry. I assumed, again, that it was the end.

Luckily Vahe had stopped about a half hour past Grand Junction, and so he was not as far as I expected. I called him, let him know what had happened, and he turned around to come back. I am so blessed to have such a wonderful support in him. 

While l waited for Vahe to come back, the nurses stayed with me and suggested I take an Ambein and anti-anxiety medication - that staying awake in the state I was in wasn't healthy for me or baby. I took just the Ambein and about an hour later still could not rest. So, I took the anti-anxiety and was able to doze off about a half hour after. I was able to sleep for about an hour, then woke up - still tired but with my emotions a little more in control. Vahe got in soon after, at about 6:30 am (let's just not calculate his average speed). 

Around 7:30, the doctor came in - suggesting that it could be possible that the amniotic fluid had leaked from the incision, and wasn't necessarily my water breaking completely. Again, we were given a small amount of hope after we thought all was lost. Of course, a little hope is better than none at all - but it has been so hard to begin coping, then try to regain hope for the best and face it with optimism. This was the third time in two weeks we have been told baby would not survive, then given a little hope that he might. 

They released me, on strict bedrest, and made an appointment to come back in the morning to check back in. We will continue to check in daily until we can have a better indication of how baby is doing before we talk about reattempting surgery. 

Right now I just kind of feel numb - my heart has broken so many times these last few weeks, and I'm not sure how much longer I can continue to pick up the pieces. I have stopped hoping for any type of outcome, and am just continuing to hold on to the peace I feel - it really is getting me through this. I pray that baby can feel the love I have for him, and know that we are doing all we can to fight for him. 

Wednesday, June 3, 2015

Colorado Children's Hospital - Surgery, Take One

We got up early this morning, checked in and got prepped for surgery. It took three pokes and about 30 minutes to find a good place for the IV - I have always had small and uncooperative veins. After getting into the operating room, I completely lost it again. There were 15 other doctors, nurses, and specialists in the room - all playing an important role and all there to help, but so overwhelming to me - reminding me of the reality of just how important and major this surgery is. Everyone was so kind, and one of the sweet ultrasound specialists, Beth, held my hand through the entire thing - just as she did yesterday. 

Initially, they were going to give me an epidural - but we decided to go with a spinal instead. As soon as I got that, they laid me down and started the sedation. The anesthesiologist gave me the same medication as yesterday, only 50% more - they probably wanted me to just shut up and stop crying. ;) The sedation really helped me relax, but I was still completely alert and attentive (and still crying) so they gave me another dose to help me doze off a bit. I wish I could have held it together a little better, because I really am not a fan of over-medicating, but in the end I am glad they did - and I know it was safer for them to not have me in crazy-pregger hysterics too. 

I don't remember much of the procedure itself, until they moved me to a different bed. The surgeon told me in the operating room that they had not been able to place the stent, but it kind of went over my head at that point in my half-daze. About an hour later, once I was a little more alert, they came in and told me what had happened. As they went through the baby's bladder, the bladder decompressed and the fluid emptied out. Normally, this would be totally fine and even what they are attempting to achieve, but they need the pressure of a full bladder to place the stent. They made the comparison to that of an inflated vs deflated balloon. Because it had decompressed, they could not place it. One of the doctors told me that this happens about 10-15% of the time in the old procedure, where they use the same instrument to poke through the bladder.

Fortunately, this does not cause any additional harm to baby - in fact he is probably having a little dance party being able to move around in the uterus now. The only problem is that the puncture hole through his tiny belly and bladder will close up soon, and we will be back to where we started. The doctors do not seem too worried about it for now, since we eliminated the pressure on the kidneys and gave baby a little more fluid to play in and help with lung development. But, we will be keeping a close watch over when the holes heal, and then will re-attempt the stent placement. Of course, there are risks involved with each subsequent surgery, but I still feel at peace - just very impatient. The surgeons are going to reassess next Monday - if the bladder is full again and everything still looks good we will plan for surgery on Tuesday.

I am now just hanging out in my room, hooked up to monitors for contractions and vitals. It is not uncommon after a procedure like this that the mother will contract for a few hours after, but I have not had one - which is also reassuring for repeat surgeries. If everything continues to look good, they should release me tomorrow and then have me come in once a day to check on baby. 

The hardest part in all of this is being away from the kids. I miss them so much, and knowing now that we will be here even longer is so hard. These weeks are going to be the longest of my life, but I know that once I hold that sweet baby boy in my arms - there will not be a second I would have traded. 

Tuesday, June 2, 2015

Colorado Children's Hospital - Day Two

We came in early this morning to have an amniotic infusion - basically putting saline in the uterus to give the baby a little wiggle room and to assist with surgery tomorrow. Prep took much longer than expected - they definitely take their time with everything around here, but in the end it makes me more comfortable to not feel rushed and know that everything is done right. 

I wasn't too nervous about the amniotic infusion because I knew it would be similar, in pain, to the bladder tap they did on baby back at home (which was horrible, but bearable), only an hour long. I was going to be given a mild sedation, which was reassuring too. However, when we got to the operating room I got so intimidated. The room was huge with tons of equipment and tools with 8 doctors and nurses waiting. I have been trying (miserably) so hard to hold it together - just everything going on in that room made me so nervous and I totally broke down. I felt so bad, but my cute little nurse said that it is a very common reaction. Luckily, the anesthesiologist got me hooked up very quickly and after about 15 minutes I was dozing in and out. The needle pricked for a second, but apparently I fell right back asleep after.

Because there was no fluid at all, they had to create a space to put the fluid - which is very hard to do. The main doctor in charge said often times they get a small amount of fluid under baby's skin or within the uterus walls, just because there is no space in between to put the needle. He said they were able to get in near the neck and shoulder and put in about 120 mL of fluid - which was enough to put about 2.5mm around the baby. Of course they would like much more fluid to be inside, but the more they stretch the uterus, the higher the chances of me going into preterm labor are - so they are very careful to only put in as much as necessary. The doctor said that after the fluid was put in, the baby stretched out his little arms. I can't wait to see how he does once he is swimming like he should be again!

After the amniotic infusion we came back to our room and I crashed for about two hours - half-sedated sleep is the best sleep ever! I got a better rest in those two hours then I have in a very, very long time. After I woke up, we had a little lunch and waited to speak with the surgeon, tell him our final decision, and discuss the details of the surgery. We also got to see the MRI pictures - which were so incredible to see. They are going to give me the images on a USB later and I will post some. We had about 5 hours of downtime before meeting with the surgeon, but it was nice to just be lazy and take it easy for a while. The room that we are in is very big and comfortable - and the nurses here are so kind and cute.

We made an appointment to check in tomorrow morning at 5:30, hoping to begin surgery at 7:30. 

After leaving the hospital, we headed straight to our hotel to try to get some rest for the morning. On our way into the lobby to check in, we were called by the hospital's McDonald house letting us know they had room for us. It was such an incredible blessing and came literally seconds before we needed it. $100+ a night on a hotel adds up fast, and the McDonald house offers a long-term stay at a fraction of the cost. Everyone here has a patient at the children's hospital, so there is this special bond among everyone - just knowing we are all facing some type of trial of the health of someone we love so much and doing our best to get though it. We have been so blessed by small miracles through these last few weeks - and I am so excited to witness our big miracle tomorrow!

Monday, June 1, 2015

Colorado Children's Hospital - Day One

Today did not quite go as expected, but everything is still looking good for baby.

Our first appointment this morning at the Colorado Children's Hospital was for a fetal MRI. I don't like small spaces, but have never really been afraid of them, so I didn't really expect the MRI to be a big deal. For some reason it really freaked me out though - it took me a while to calm myself down once I was in the machine. In the middle of the scan I started getting really intense hot flashes and pinches in my nerves which made me panic for a minute too - but I guess that is normal. I'm sure just my overall anxiety didn't help much either.

After the MRI we went in for an ultrasound. It took a while to measure what they needed to since there is no amniotic fluid around the baby right now. Then we went and did a fetal echo - basically just an extensive ultrasound of the heart. 

All of the scans showed pretty much what they were expecting- an enlarged bladder, swollen kidneys and no amniotic fluid. The heart looked good.

We then met with the surgeon and a few other specialists and talked about the options available to us. One, is to terminate the pregnancy. We could also just let the baby die on its own. Neither of those are options for us, though. Then he explained three different options for intervention. The first is to use a laser to try to zap through the obstruction. There are many risks associated with the laser procedure - mostly that is is just not effective on its own. He recommended that if we wanted to try that - that we also back up with another procedure. 

The next option is to place a shunt from the baby's bladder into the amniotic cavity. The shunt is 1mm wide and allows for passage of the fluid - but still with considerable strain on the baby's kidneys. This procedure has been done the same since 1981. While successful in some cases, babies who have had this done still suffer immediate consequences at birth and are usually on dialysis until they are able to get a transplant. He said about 60% will survive birth, and about 35% make it home - most deaths due to underdeveloped lungs. 

The last option is to place a 1.2 cm stent through the baby's bladder - similar to the shunt, only much wider - eliminating back up and pressure on the kidneys. A 3mm puncture is made - then a small balloon inflated inside to stretch it to the right size, where the stent is placed. Another advantage to the stent is that it cannot be pulled out by the baby. The shunt actually coils both inside of the bladder and outside of the baby to prevent it from coming out - but it very flexible, and can easily fall out on its own or be pulled out by the baby. However, the stent is made of gore-tex and cannot be moved. The shunt needs to be replaced an average of 2.5 times per pregnancy, while he does not anticipate the stent needing to be replaced at all. Of course, there are still many potential risks - but he feels like the stent will be much more effective. 

However, the major drawback to the stent... is that it has never been done before on a human. It has only been tested on animals. Knowing that our baby would be the first to undergo this type of procedure definitely makes me nervous. However, the surgeon has been doing bladder outlet obstruction operations for years, and I trust his experience beyond my two weeks of google searching on the issue. We really feel good about going the route of the stent. It helps me to know that if I am brave, we could potentially help save other babies in the future, too.

After our meeting with the surgeon, we set up an appointment for tomorrow morning to come in and have fluid injected into the amniotic cavity and to draw blood - in case I need it during or after the operation. The amniotic fluid will help them see more on the ultrasound, and is necessary for the operation as well. The surgery will more than likely be on Wednesday, Thursday at the latest. 

I am just feeling so overwhelmed right now. Vahe and I both feel really good about the outcome of the surgery, but now all of the long-term details and uncertainties are really stressing me out. I think a lot of it has to do with the anticipation of having the surgery today, but now waiting at least two more days. The surgeon also told me that after a 24-hour monitoring period post-op, I would need to stay an additional week and come in once a day for an ultrasound. We had hoped that we would be home on Thursday or Friday, so the additional week is definitely going to be an emotional and financial expense we did not expect. I already miss the kids so much, it kills me to know I won't see them until late next week. I know they are in the best hands possible with Vahe's parents - and I am sure they are having so much fun, but I just wish that they were here. My heart is breaking not being with them, but I know in the end when this is all behind us, it will have been worth it. 

The surgeon also suggested that we plan on moving here around 30-32 weeks so that I can deliver here. He anticipates a preterm labor, and would prefer us to be here - especially being the first to undergo this type of surgery. The baby will likely be in the NICU for at least a few months, so that means we would be in Denver at least 3 months. I am just trying not to think about that yet, and just get through these next few weeks. I don't think I have gone more than a few hours without crying in the last two weeks, and I am just so drained beyond anything I thought I could handle. I have so much hope for our little baby boy - which really has brought me so much peace. I just wish we had a little more hindsight to push us through.