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.