Support

Over the past three months, we have been overwhelmed by the love and generosity extended to our family. So many of you have asked how you can help and have offered financial assistance during this difficult time of uncertainty. It is humbling to be the recipient of service, financial or otherwise, and up until this point we have been hesitant to rely on others to help us cover our expenses.

However, our travel expenses, medical bills and costs of everyday living have accumulated over the last couple of months as Vahe has taken time off work to emotionally and physically support myself and the kids - and our situation has become tight. As we financially plan ahead, realizing we will also need to cover the additional costs of either a burial or a NICU stay for Jude, I know that there is a great stress on Vahe to keep our family afloat while also taking care of our three littles at home full-time now.

If you are able, we would be grateful for your support. Any donation we receive will ease our burden tremendously as we move forward with our pregnancy, particularly in the coming months. The button below will allow you to donate directly to our account via PayPal – you do not need a PayPal account to donate. Please know that any amount, great or small is so appreciated.

I also know that there are many of you wanting to help, but may not be able to do so financially. Please, continue to keep us in your prayers – prayer is really the best gift you could give our family at this time. Another small gesture that would mean the world to myself and the girls, is to send them a little letter, hand-drawn picture or card. The hardest thing about our current situation is that I am not there to give the kids the attention that they need from me right now, especially from Kyah and Hannah who realize the difference. It is their favorite thing to receive any type of mail, and just knowing that they had a smile on their face for a few more minutes in the day would be a great blessing to me. You can contact me for our address if you would like it.

We thank you again for your continued love, prayers and support on our behalf.

Back in Denver

Only days after returning home from our last surgery and hoping to be admitted to the hospital for monitoring, Jude's shunt was no longer working. It is common that these need to be replaced during pregnancy, and so we hoped that we would be able to try one more time. However, after consulting with our MFM and surgeon, they decided that we would not be candidates to try the procedure again. Because Jude's belly has been so stretched out, his skin and muscles on his belly have become very thin, a condition known as prune belly. Our surgeon believes that because the skin is so thin, once his belly decompresses from an effective shunt, it actually closes in around it - not allowing the passage of fluid.

At first, our MFM gave us the news that we would not be able to try again - and did so in a way that left us feeling hopeless again. He told us that even if Jude was able to be resuscitated after birth that the children's hospital in Salt Lake would not be able to put him on dialysis due to his prune belly. And so, even if we made it past our first hurdle of lung function - there would be no hope going forward. Also, if for any reason I went into labor early - dialysis would not be even be an option in SLC until he was over 5 1/2 lbs. He again gave us the option to deliver at any point - assuming the outcome will be the same regardless.

Realizing that our MFM has always been extremely pessimistic, or "realistic" in terms of describing the outcome for Jude, I texted our surgeon asking him to call us so I could better understand the reasoning of why we could not try again. When our surgeon called, he described the exact same situation but instead of telling us there was no hope at all as our MFM had, he told me the opposite - that he didn't want to get my hopes up too much. He explained that perhaps there had been enough fluid around Jude following each surgery to give him the lung function he needs to survive. He also hinted that although we could not go to Denver for another surgery, that we should weigh our options as to where we would like to deliver - and gave me his confidence that the hospital in Denver would be able to offer us very aggressive treatment in terms of resuscitation and dialysis.

The decision to come back to Denver was just as easy as it was hard. We know that this is where we need to be, if only for the peace of mind in knowing that we did absolutely everything that we could. And honestly, although I will be away from beautiful kids for much of this time, it is so much easier to endure through in an environment where everyone is hopeful and fighting for Jude just as hard as we are. If Jude doesn't live, it's ok - but the hope that we have here is what I need to get through the rest of the pregnancy, rather than being back home where our team of specialists believe there is no hope at all and that we are just continuing to strain ourselves physically, emotionally and financially.

The plan now is to deliver at 34 weeks, as is standard with ruptured membranes. Vahe and the kids will be coming to visit on weekends over the next month leading up to delivery. I wish that our whole family could be here together, but Vahe needs to be back in Utah so he can work part-time while taking on the role of (the cutest!) Mr. Mom full-time. I feel so blessed to have such a wonderful, supporting husband through all of this. Just the normal emotions of this situation supplemented by pregnancy hormones have made this mama a wreck over the last few months, and in addition to supporting our family while finishing up his last semester at BYU, he has held my hand and dried my tears through it all.

This trial has become so much more than the outcome of life or death - but of heartache, guilt and uncertainty. Of course I want our son to live, but I really know that we will be okay if that is not God's plan for our family. What has been so hard for me to deal with is just not knowing. And, in that uncertainty, trying not to give in to the adversary who is convincing me that it is my fault - and allowing me to experience a darkness that I have never known. It's amazing how the atonement has started to apply so much differently in my life now. I know if anything, looking back, I will be grateful for the new perspective I have gained on our Savior's infinite, eternal, and unconditional love though this trying time and process.

Once Jude is born, we will reassess our plan as far as where we will be living. If he survives, we will likely all move to Denver as he will have a lengthy NICU stay. If he does not, then we will go back to Utah and work through the next phase as best we can. Either way, I know that the journey ahead of us will not be easy - but we are prepared for either outcome, while still hoping for the best.

I can not emphasize enough how grateful we are for your love and prayers. I was initially so hesitant to open up about our situation online. But, in the end, I am so glad that I did because it has honestly been incredible to feel the support of so many that we otherwise do not have regular contact with. I am humbled by the love so many of you have extended to our family and once again thank you for your thoughts and prayers on our behalf.

Surgery #4

I have been hesitant to post lately because honestly, I am really starting to struggle. This trial is becoming more than I feel I can handle at times. Everyone is saying how strong and brave they think I am, but I’m not. I’m fighting for this baby boy with every ounce of strength that I have, but I’m barely enduring. Most days I am ok, but there have been some very dark and painful moments in the last month. 

There is not a heartbreak or pain comparable to knowing that it is your own body that is taking away life from your child. If I could only keep fluid in for Jude, he would live – but I am failing him. Logically, I know that it is not my fault. I know I am doing everything I can to fight for him. And, I know that it is my body that is giving him life now. But as a mother, the guilt is overwhelming and the despair is haunting. The peace is beginning to slip through the heartbreak. My heart feels numb and callused, being torn so hard in so many directions.

We have been told more times than I can count that there is no possibility of Jude surviving. For a while, we 100% sure that he wouldn’t make it. Although the last thing in the world I want is to bury my baby, for a while, there was so much comfort in the certainty.

And then, just as I feel we are beginning to accept and grieve the outcome, we are given the slightest glimpse of hope again. Of course, even a little hope is better than nothing, but it is so emotionally exhausting trying to regain hope with optimism after so many failures. We have doctors and specialists on either side - some discouraging us to pursue any further treatment due to the heightening risks of each procedure, and some encouraging us that we could just save this baby.  

Last week we were given one more chance to fight. The fetal surgeons at Children’s Hospital Colorado were able to replace Jude’s shunt with the hope that my uterus had healed and would maintain the fluid inside – enough so his lungs could develop. However, after the surgery, it appeared that I was still ruptured as all of the amniotic fluid drained right out. I experienced some of the hardest and darkest hours of my life this last weekend after the surgery, realizing every time I felt more fluid leave my body, that it was a literal representation of the life I was also taking from my son - a pain that can not be described.

During the surgery they drained over 1 liter of fluid from Jude’s belly. Before doing so, the intense pressure inside had caused his heart to displace and his kidneys, lungs and other organs to contract from the intense pressure. I’m sure that he was so much more comfortable after the procedure eliminated that pressure - the doctors told me that he started stretching and wiggling after the fluid was removed. And three days after surgery, despite the leaking, we did see a few small pockets of fluid remaining outside of him – giving us hope that I may be able to retain at least a small amount moving forward.

We came home with the assumption that we would just hope for the best. As slim as the chances may be, it’s all we can do anymore. After the rough weekend that I had had, I realized after a few days of clarity that I can not even think about Jude leaving us until he does. Right now, for my own state of mind, I have to believe that he will live; that everything that we are doing and going through is to fight for and to save his life.

And if he does go, I really am ok with it. It's not what I want, but I understand and we’ll get through. I realize that it is the likely outcome, but right now the best thing that I can do to continue to face this with faith and to put off the darkness and unjustified guilt, is to believe that he will live. My baby will be okay. 

In normal circumstances, a mother will be put on hospital bedrest at 24 weeks after premature rupture of membranes (water breaking) to be on antibiotics and monitored closely for infection, while also monitoring the baby for signs of distress. We assumed that I would be admitted to the hospital today under those conditions and wait out the remainder of the pregnancy – probably delivering around 34 weeks.

However, our ultrasound this morning indicated that Jude’s shunt has either come out, or is blocked in some way again. It hasn’t even been a week. It is typical that these shunts need to be replaced multiple times – but it all just seems so surreal that it was only effective for a matter of days. I am waiting now to hear back from the fetal surgeon to see if he will be willing to try to place the shunt one more time. If so, we will go back to Denver and likely stay there for the remainder of the pregnancy, and throughout Jude's NICU stay if he survives. If another shunt is not an option, we will wait it out at home - probably with weekly appointments rather than the hospital because Jude is not considered "viable" in his current state due to his underdeveloped lungs, and no fluid to develop them further. 

Please continue to keep us in your prayers. We need every single one. 

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. :)