Friends,
We had our appointment at Cardinal Glennon yesterday. We were there from 8:30 in the morning until after 2PM. They were great to work with. They were very kind and gentle with us as we received some hard news. The bottom line is our boy has been diagnosed with Chronic Kidney Disease.
The good news is the amniotic fluid levels were stable so that the baby’s lungs can develope and Jessica won’t need to have any inutero surgeries. It looks like the blockage is only partial at this point so the baby can pass urine.This is important because this means there is no indication as of now that Jess won’t be able to go full term with the baby and she should be able to have a normal birth. That could still change but as of now we are hopeful.
In the afternoon we met with a Nephrologist (kidney specialist). He confirmed what already knew that the right kidney is completely non-functioning and will remain that way. That is the multi-cystic dysplastic kidney. The new bit of information we received was that the left kidney is likely cystic dysplastic meaning it partially has the same problem the right kidney as but has not been affected fully. At this point the doctor believes the left kidney will have some function at the time of birth. How much function is the question. Unfortunately we will not know the answer until the baby is actually born. Right now, the baby is relying on Jessica’s kidney/placenta to do the work (just like a normal baby) and his will not kick in fully until he enters the world and his little body will have to take over for itself. At that point the doctors will keep a very close eye on him to see how much function that little kidney will have.
The doctor gave us two ends of a spectrum where our baby could land. No matter where on the spectrum he lands, one thing that is almost certain is he will need a kidney transplant at some point in his life.
Best case scenario: The baby is born and his partially functioning kidney outperforms expectations and does the job well. This is our prayer. The baby spends a week or two in the NICU to have a catheter put in his bladder to drain fluids and also likely a surgery to remove the partial blockage, then comes home. We would continue to have regular appointments to keep an eye on things. The kidney will then eventually decline because it is being overworked at which point he will need a transplant. The Nephrologist told us that kids with this condition can go up to two decades before needing a transplant. Most likely it will happen sometime in adolescence.
Worst case scenario: The baby is born with very little or no kidney function and will need to go on immediate dialysis. We would spend many months in the NICU and eventually we would be trained how to do home dialysis which the baby would need every day until he is big enough to receive a transplant. He would need to reach at least 22 lbs before a transplant is possible. For a kid with this condition that usually takes about 1.5 - 2 years. The doctor told us that about 50% of babies reach that point. The ones who don’t make it usually die from infections or other complications.
So right now the hardest part is the waiting. Jess is about 26 weeks now which means we have over three months to wait before we will have answers. We are convinced though that God is good is constantly proving himself faithful to us. We know God will be glorified through the life of our son no matter what happens. While we wait on the Lord to teach us and guide us, we pray humbly for a miracle. We know God, who is the giver of all good things and the source of love itself, loves our little one infinitely more that we do so move forward the only way we know how, trusting in Him. We are also praying that we would grow closer as a family through this. I am not going to sugar coat things, we feel like we are in a wilderness right now.
Thank you for your support and love.
Hey friends,
We are writing you all this email to let you know what is going on with our littlest one. We really covet your prayers in the next few weeks. We went in today for an ultrasound to check on the baby's kidneys. 4 weeks ago we discovered at our 20 week ultrasound that the right kidney was multi-cystic and not functioning at all so they wanted me to come in for monthly ultrasounds to monitor the healthy kidney and the rest of the baby's development. If we understand all this correctly, a kidney becomes multi-cystic when there is a blockage of some kind and fluid builds up in the kidney which damages healthy tissue. The doctors originally thought the blockage was at the entrance to the kidney and only affecting that one kidney.
Today when we went in we learned that the left kidney now has some fluid built up in it as well. This leads the doctors to believe that there is some sort of blockage in the urethra that is not allowing the urine to pass properly. The bladder looked very full as well. This is what they think is causing the fluid to build up in the second kidney. If the second kidney is fully blocked, it will cause a decrease in amniotic fluids which are vital for the baby's development. Today my amniotic fluid levels were good so they said it is possibly only a partial blockage, not a full blockage. They want me to come back in two weeks, when I am 26 weeks, to check my fluid levels. At that point they will be able to know more clearly how serious of a situation this is. If the amniotic fluid levels have dropped then the situation could be very serious. If the levels are stable, then the prayer is that the second kidney won't have permanent damage from the fluid buildup. Regardless of what happens we will be working with a pediatric urologist and there is a good chance that I will be switched to a high-risk neo-natalogist. Some of the possibilities that we discussed with the doctor today were extremely serious and concerning so we are feeling sad and scared.
Please pray that the amniotic fluid levels stay stable and that if there is a blockage that it would miraculously be removed. Pray that we'd be able to understand what the doctors are communicating to us correctly and that we'd have wisdom as we move forward. Thanks friends. We will keep you updated.
