Aug. 26 Appt. Update

Yesterday we had our first appointment with the perinatologist (a doctor that specializes in high risk pregnancies), Dr. Moore, who we will be seeing for the rest of the prenatal and postnatal care during the pregnancy.  Jeff was able to come with me (thanks to a very nice doctor he's working with to allow him to leave when an unscheduled OR case got scheduled at the same time as the appointment last minute) and my mom was here to take care of the kids. It was really nice for me to have him there and the kids to be able to have fun at home with grandma. 

Dr. Moore took a lot of time answering any questions for us and then did a quick ultrasound of the baby.  The overall prognosis for the baby is still very poor but we still have much to sing praises for.  There are really no great tests to tell us how well the kidney function is doing until after the baby is born but based on appearance, the kidneys are severely damaged.  However, despite the condition God has allowed the baby's body to function enough to produce enough amniotic fluid around the baby and the baby to appears to have healthy lung tissue. We are very thankful for that and are rejoicing! This also indicates that the pressure in the bladder may be enough to cause some fluid to leak around the closed valve which we hope will also decrease some of the pressure on the kidneys and other organs.  But, again, damage has already been done to the kidneys and the bladder is still extremely enlarged so we will be praying that if there is any kidney function left it will be preserved, more fluid will continue to leak to decrease the bladder pressure more, and the baby will continue to have amniotic fluid to move around in and practice breathing to get the lungs developed best as possible. When asked about delivering the baby early to try and preserve more kidney function vs. letting the baby go to whenever nature takes it's course Dr. Moore said our goal will be to make it 39 weeks.  Since there isn't a good way to predict the kidney function it's best for us to try and get all of the other baby's organs as developed and ready as possible so if by chance (and with a miracle) there was kidney function left the baby would tolerate any treatments.

Dr. Moore recommended that we go to the University of California San Fransisco (UCSF) for a second opinion in the next couple weeks and he will be setting that up at the beginning of next week. He doesn't believe that they will have any further recommendations or procedures but said if it was his daughter he would send her there just to get a second opinion to make sure we covered all of our options, which made us also feel good about who he is as a doctor. I will also be meeting with a nurse practitioner in the next week or two for an official new OB intake since that all kind of got skipped during all of this and to take care of the labs, glucose tests, and all other normal OB things that need to be done during this time. We will then be meeting with Dr. Moore every 3 weeks and also will have a full ultrasound on week 25, 29, 32, and 35 (we are going into week 24 now).  Dr. Moore is also arranging for us to meet with the pediatric urologist (doctor who specializes in children's kidney/bladder issues) that will be on our team after the baby is born.

We do have a proper name for this diagnosis but have chosen not to mention it in any of the updates for a few reasons.  We ask that rather then trying to search the internet for answers and possibly misleading information that you instead pray for wisdom and guidance from the doctors that God has perfectly placed in our path during this journey who specializes in it.  Since it is not a genetic disorder but a congenital disorder it will not have any effects or risks on our family members and their future offspring.  Lastly, Mikayla would like to do a surprise gender reveal so we are waiting for a time to do this when Jeff is around. We appreciate your understanding of this!

I know I have said this before but I will continue to say it-we cannot thank you enough for the prayers, emails, texts, cards, and support so many of you have given us.  Prayers are so powerful and I'm not sure we ever really felt that power as much as we do now.  God is so good and has made himself known in many ways throughout these days. With His love and strength we are able to enjoy all three of our children during this time in a way that we would've never thought possible during these circumstances.  As Dr. Moore put it, we are welcoming a baby into our family and into our arms and therefore no matter how long that baby is here on earth with us it is a really good thing...and we couldn't agree more.

With love,
Jeff & Nicole