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!

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 12:30. At 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. 

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.