Round 1 Treatment Complete - Follow Ups Scheduled

We finished the 1st round of globulin treatment around 1:00AM on Monday night. It only took about 5 hours because the dose/amount is calculated based on my weight.  So towards the end of a pregnancy, the doses usually get larger and take longer.  They monitored me very closely during the treatment, checking my temp, blood pressure and pulse constantly.  They also gave me benadryl to help combat any possible allergic reaction, but all it did was make me very sleepy.  We were discharged the next morning after Dr. Fox and Dr. Demmler both stopped by to visit with us.

I cannot say enough about what an amazing facility and wonderful doctors they have there.  We met with so many doctors, nurses, research assistants, clinical coordinators, etc., and they were all so thorough and treated our baby with the urgency we felt he needed.  Even though they are 2.5-3 hours away, we will definitely be driving to Houston for care throughout this pregnancy and beyond if we need to.

Though we are taking things one step at a time, it is very important to us that this baby is born in Houston if he is able to keep fighting the virus.  Dr. Demmler would care for him after birth and is one of the world's top CMV experts/doctors.  She has spent 30 years treating CMV babies and knows exactly what antivirals to give them, what medications help with things like the hearing development, and exactly what options to present to us.  It would be really difficult to trust another doctor with him, especially because there are not many in Dallas who are familiar with treating CMV.  There is one - Dr. Pablo Sanchez at UT Southwestern Medical Center - that I am keeping tabs on in case we do have to deliver in Dallas.

We had the opportunity to ask Dr. Demmler questions about CMV. She said that the death rate for CMV babies is pretty low - about 8%.  I read another stat that said about 400 babies pass away every year from CMV.  As awareness grows, that number will probably also grow.  But 400 babies out of the millions of babies born each year is really pretty rare.  As we have been told over and over though, our Silas is in that "rare" category of being very sick and very symptomatic already.  She said that the globulin treatment is certainly not an experimental treatment and that while it is clinically accepted, it is not yet considered the "gold standard" of treatment.  She also surprised us by saying that the globulin has at times reversed effects that the virus has had on the baby. When we expressed frustration over the fact that our specialist in Dallas did not even present it as an option, she said that part of what she is trying to do is educate more doctors about it. I know it would have made a huge difference if we could have caught this and started treating it much earlier.  But all we can do now is take it one day and one step at a time.

We let her know that we want to help her cause and aid in her research in any way possible.  What she is doing is so very important to parents who find themselves in situations like this, and I feel that all parents should have hope and believe in miracles and advancements in medicine.

We have a follow up sonogram in Houston next Thursday to check the status of the baby, and then are scheduled for an MRI of the baby's brain.  The next round of globulin will be in another 3 weeks, and they also want to do another echo of his heart at that time. They want to keep a very close eye on Silas, so we will plan on going down to Houston for checkups about once a week.

We have had a lot of questions about how we are doing.  Really, every day is different.  We have so many frustrations about CMV in general, about how our specialist in Dallas handled our case and about why our poor little boy has to suffer through this.  That being said though, we are trying to stay very positive and are really thankful to now be treated by an amazing team of doctors. We know that we are doing everything we possibly can, and the rest is up to God.  No matter what happens, HE must have a plan - even though it is difficult to sometimes accept.  We are so blessed to have two beautiful and amazing kids already, and the support of so many loved ones.  The messages, calls and cards I have received from friends near and far helps to lift our spirits and reminds us how truly lucky we are.

(Thankful to be getting our 1st Globulin treatment at Texas Children's Hospital in Houston)