A Memorial In The Form Of A Tree

I have amazing friends.  On Sunday, my best friends and my sister-in-law showed up at my house with a tree.  They did lots of research and decided on the perfect tree to serve as a memorial for Silas.  They picked out a "Rising Sun Red Bud" native tree that has heart shaped leaves and blooms beautiful purple flowers every February.  We picked the perfect spot to plant it in our front yard where we can see the tree every time we walk by the front door, or when we are sitting on the recliner or couch.  It was a gorgeous sunny day and it was so therapeutic to watch my best friends, their husbands and all of our beautiful children working together to dig the hole and plant the tree. It was a good day and it lifted our spirits tremendously!

We have been doing okay.  We of course have days where we are overcome with sadness and days where we are angry and question why.  But we also have days and moments where we are very thankful - thankful that Silas will never have to suffer, thankful for the 2 amazing children we have, and thankful for the very supportive and loving friends and family that surround us. We have been overwhelmed by the messages, cards, prayers and thoughtful gifts we have received.

 One of my Mom's best friends sent me this little crystal guardian angel that is now hanging in my car.  It is perfect - tiny, precious and a beautiful reminder of our little angel.

 A cookie bouquet for the kids sent by some dear friends who unfortunately know exactly what we are going through and have been full of compassion and advice.

Flowers from my brother-in-law's family that have brightened up the house all week.

And the list goes on and on....My life long best friend came over while we were still in Houston and weeded all my flower beds, stocked the house with groceries, and had a warm meal waiting in the oven after a long trip home. My mother-in-law brought us a meal that fed us for days. Another best friend came to visit and brought books for me and the kids (I am a bookworm and loved them!), lots of junk food, and several meals from members of her church who didn't even know us. We were sent a box of frozen individual meals that we just pop in the microwave when we are in a pinch from another BFF. My sister-in-law brought over a bag of our family's favorite goodies. We have also had several friends make donations in memory of Silas to CMV Foundations - a gesture that touched us tremendously. All of these acts of kindness remind us how lucky we are and continue to lift our spirits. There are no words to explain how much all of these things and each message has meant to us and how grateful we are. Our family and friends loved Silas already like we did, and have cried with us and for us.

Stuart picked up Silas' ashes this week in Houston and we plan to have a small service on Saturday.  We chose to have the remains buried in our church cemetery in Ennis in the "Baby Land" section.  I am ordering a small granite grave marker and it is a place we can visit in the future if we want.  The kids seem to be handling it okay, but we want to involve them and give them closure as well, so they each wrote a letter to Silas and we will let them release balloons at the service.

If you feel inclined, the best way to honor Silas is to spread the word about CMV.  A great website to pass along is www.stopCMV.org. Please continue to pray that as awareness spreads, a vaccine and/or treatment will come along that stops future problems with congenital CMV.

We Lost Silas

We lost Silas over the weekend.  He was delivered in Houston on Sunday night.  We are now back home. If you want to hear more of the details, you can continue to read….

I woke up on Friday morning with the feeling that something was wrong.  His movements had become very limited.  The doctor had told us that if we were ever concerned, we could go to the office to listen to the heartbeat on the Doppler, or stop by a hospital and they could do the same thing.  Stuart asked if I wanted to go, but I decided to give it a little more time.  Later that morning I felt a few little kicks, which brought some temporary relief. 

However by the next day, I had not felt any further movement and I started having some Braxton Hicks contractions.  We decided to go to our local Ennis Hospital on Saturday night to try to listen to the heartbeat and make sure everything was okay.  When we first got there, they found his heartbeat right away using the small fetal Doppler and they said it sounded fine.  I was honestly surprised….I really thought something was wrong and prepared myself for the fact that we had lost him. It then took a couple of more hours because they wanted to monitor me and were working on the discharge papers.  As we were getting ready to leave, we asked to hear the heartbeat one more time.  This time, the nurse could not find it.  She went to get the head nurse who had been a midwife for 35 years and had a lot more experience.  This nurse could not find it either.  It was hard to fathom the fact that I had already been prepared for the worst, but when we heard that heartbeat right away, we were relieved and happy that everything was okay.  Then just a couple of hours later on our way out of the door, they could not find the heartbeat.  The next step was to do a sonogram to try to see the heartbeat.  The sonogram technician let us know that he could not tell us anything and would have to give all of his results directly to the nurses.  It was maddening to lay there while he was doing the sonogram, taking some measurements, and doing whatever else he was doing.  I wanted to scream at him to just tell me if there was a heartbeat or not, but knew it would not do any good.  They wheeled me back to the hospital room and we waited for what seemed like forever for the nurses to come let us know something.  Finally Stuart went out to ask, and they let him know that they had called the “on call” doctor to come in (it was around 1am) and said that she would be there soon and did not live far.  At that point, we knew.

The doctor came in and finally let us know that they did not find a heartbeat and that the baby must have passed during the couple of hours that we were there.  Though we knew this could happen and were somewhat prepared for it, we were still stunned.  We then had to decide when and how we wanted to deliver.  The options were to wait until Monday morning (it was late Saturday night/Sunday am) and deliver at Baylor Dallas with my OB, stay at the small local hospital we were at, or go to Houston and deliver there.  In the end, we decided to go ahead and drive the 2.5 hours to Houston (even though it was the middle of the night) for a variety of reasons:  we had received such phenomenal care there and knew that we would continue to, we still wanted to help the CMV specialist there with her studies in any way possible, and my parents and sister were both already in Houston and could watch our kids while we were there.  We packed the kids in the car and got on the road to Houston around 3am.  Once there, we dropped Samantha and Sutton off at my sisters and checked into the hospital.  As expected, the care we received there was wonderful from start to finish.

They induced me right away early Sunday morning. Silas was delivered that evening at 7:17 pm on the 17^th of February.  We had made the decision that we did want to see him and say good-bye.  We got to hold him and tell him how sorry we were.  I think it helped to give us a little more closure. He was tiny of course – almost a pound and 9.5 inches.  We both thought he looked like Sutton.

It was definitely the most painful experience of our lives.  But we find our relief in knowing that he is now at peace and not suffering.  Our biggest prayer was that he would not suffer – ever, and we believe that God must have answered that prayer.

The hospital had a child life specialist that gave us advice about how to talk to Samantha and Sutton about what had happened.  It was a huge help for us because we were unsure how to handle that.  The kids came up to the hospital the next morning and we just honestly and openly talked about it with them.  We let them know that it was okay to ask any questions that they wanted and we could talk about it anytime.  We do not want it to be a taboo subject that we don’t talk about and we also did not want them to think that anytime that they (or someone else) got sick, that they would have to worry about dying.  We explained that this was very different and that his little body was just too small to fight the type of sickness that he had and it kept him from growing properly.  They seemed to really understand and be okay, which was a relief for us.  We showed them the prints of his little hands and feet and gave them the teddy bear that was provided by the hospital.

We plan to have just a small private ceremony at our church with the kids as soon as his ashes are ready.  Samantha has asked about it a couple of times and I think it will help her to have closure as well.

We cannot say enough about the amazing staff at Texas Children’s Hospital.  It seemed like every doctor, nurse, specialist and research assistant that we met during our time there came by to visit us and see how we were doing.  I have come to believe that some nurses and doctors must be angels – they are so good at what they do and we would have been lost without them.

We are also so thankful for our friends and family who have been on this journey with us. We know we have so many people who care about us and want to do anything they can to help. We love and appreciate you and want you to know that we will be okay. Our Silas could not be in a better place and we will see him again someday.

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)

Starting the 1st Treatment

We just got checked into the hospital and are waiting to start our first round of the globulin treatments. We have had another long day of doctors and meetings, but everyone here has been amazing.

We started at 8am with a very thorough sonogram and a meeting with Dr. Fox. All of the same issues are there and we also found out that the lungs have not developed well so far. Again we were told that the baby is still very sick, and there is only a small chance that he will survive, with or without the treatments. But they agreed that we should definitely try and are willing to help us in any way possible.

The globulin treatment is a 10-12 hour IV infusion, so I have been admitted into the hospital where they will monitor me overnight.

We will come back to Houston next week for another check up and to monitor how he is doing. We are not sure how often I will need the treatment going forward, but more than likely every few weeks.

We also had a 2 hour echo and met with another heart doctor. The heart is still in distress and there is still a leak in the tricuspid valve, but structurally it looks okay.

There is probably a lot more to add, but it is now time for the treatment and rest. We are going to have an MRI done on the baby's brain tomorrow or next week. He has flipped positions and is now head down and facing down, so they had a hard time seeing certain parts of the brain clearly during the sono today.

We are still in the position of hoping for a miracle and are thankful for the prayers of so many. I was even told that my coworkers gathered together today during our big Sales and Marketing meeting (that I am missing) and said a prayer for me. During times like these, it is so heart warming to know how many people are supporting us!

Headed to Houston to See a CMV Specialist

Well, it is Sunday afternoon and we are on our way to Houston to see a CMV specialist at the Texas Children’s Hospital.  It has been a whirlwind of a few days.  I spent the rest of Wednesday after we found out reading everything I could about CMV, going through the studies, and exploring possible treatments.  I know that our doctor in Dallas told us that there are “no treatments” for CMV, but that is not completely the case.  As I mentioned in the last blog post, the use of globulin treatments is often used and the studies completed have all been very favorable.  I knew right away that I wanted to find a way to try to get those treatments if there was any way possible.  While it is not fully approved yet (getting anything approved for a pregnant woman is nearly impossible), it IS being done – and with good results. What exactly is the globulin?  At the time, I really didn’t care – but I have since learned that it is basically donated plasma with high antibodies to the CMV virus.  From what I understand, the treatments will help neutralize the virus and help prevent further damage from being done, but it will probably not reverse any damage already done.  The treatments can be given through an IV, or in some cases, is even injected directly into the placenta or umbilical cord.

The next day (Thursday) things just miraculously fell into place.  I sent an email early that morning to an organization called “Stop CMV” who helps put you in touch with doctors in your area who are knowledgeable about the virus and willing to help.  They immediately gave me a call and I spoke to the lady who runs the organization.  This is a cause very dear to her heart, because she had twins that went through a similar experience years ago.  She said that they would send my email on to Dr. Adler and hopefully he would contact me soon.  Dr. Adler is pretty much “the guy” for CMV and he has conducted many studies and written several papers about the virus throughout the years.  Here is a link with more about him and his pulished studies:  http://www.cmvregistry.org/stuartadler.html

Within an hour of receiving the email, he called my cell phone – even though he was in Europe on business.  He said that I sounded like a candidate for the globulin treatments, but he wasn’t familiar with any doctors in Dallas that he could refer us to for immediate treatment.  I told him that’s okay – we can travel wherever you send us!!  He said that he would find us a doctor and to await an email from him with a referral.  After we hung up, I immediately started searching the Internet on my own for a doctor who might help us.  I wasn’t sure how long it would take to hear back from Dr. Adler – I knew he must be a very busy man!  Everything I found pointed to a Dr. Demmler-Hessler in Houston who is a congenital CMV expert.  I found several of her papers, studies and blogs on the Internet and sent her an email about our case right away.  Minutes after I hit send, I got the email from Dr. Adler referring us to the exact same doctor.  He also emailed her personally on our behalf.

Minutes later I received a call on my cell phone from Dr. Demmler herself.  She had received both of the emails and agreed to see us as soon as possible.  Never in my life have I seen such a quick response from doctors – I expected to be passed off to nurses and research assistants first, but it was like everything just fell into place.  Within a matter of hours, I was sending over all of my medical records and insurance information and waiting to hear back about appointment times.  Time is ticking!

On Friday I received confirmation that we were set up for several appointments on Monday.  Starting at 8am we have an ultrasound appointment, then a genetic counseling appointment, then next a meeting with Dr. Demmler, and then finally a meeting with a Dr. Fox at the maternal fetal medicine specialist office.  Basically, they have a team approach.  Dr. Demmler will consult with us as a CMV specialist and would be the one to care for our baby after birth.  The maternal fetal medicine specialists would administer any treatments during pregnancy and manage our case during the pregnancy.

I asked Dr. Demmler – if things go smoothly and IF you agree that I am a good candidate for the globulin treatments, is it possible that I could get a treatment while I am down there??  She said it was definitely possible and to plan on staying for a few days if necessary.  WHAT GREAT NEWS!!  My only concern was the cost of the treatments.  I had read in one of the studies that while the globulin was expensive (like $5000 a treatment), the studies concluded that the cost of the treatment was found to be less expensive than not doing them in the long run.  The CMV babies that did not get the treatment ended up needing more special care after birth that was even more expensive than the globulin.  I knew that if we ended up getting the treatments, I would more than likely need several doses, and well….you do the math!

I anxiously awaited a call from the fetal medicine office, who had contacted my insurance company to try to get the pre-authorization.  We had already met our deductible for the year just going to the specialist in Dallas, and during our last appointment we starting paying on the 80/20 plan (we paid 20% of the last charges for the specialist/sono, etc.).  My hope was that insurance would at least agree to pay the 80% and we would only have to pay 20%.  When they called to tell me that the globulin treatments would be 100% covered by my insurance, I almost fell out of my chair and had to ask her twice – are you sure?? 

This has all fallen into place so easily, I can only conclude that we are doing the right thing and our decision to pursue a 2^nd opinion and possible treatments is the right course of action.  We are fully aware of the possibility that the treatment may not work (IF we get it) and the baby could just be too sick already to fight off the virus.  BUT, I don’t think we will regret trying to fight for the baby and doing everything possible to help him – medically and spiritually.  We met with our priest this morning before church and also got the Sacrament of Anointing/Healing. 

We are eager to meet with the new doctors tomorrow and get another opinion about our little boy, how he is doing, and what we can do to help him.  Someone close to me who has been though LOTS of medical issues told me “if you don’t like the answer your doctor gives you, find another one…..you will find that they will probably tell you something completely different.”  We are hoping for that!

Thank you all for your support and love and we continue on this journey with our little “Silas”.  Yes – we have decided on a name as well!  We sat down with Samantha and Sutton yesterday and explained to them that the baby was sick and we would be going to Houston for a few days to meet with doctors who were going to try to make him better.  Samantha and Sutton both chose the name Silas out of the choices we gave them, AND it is Stuart’s choice (and original idea)….so Silas it is!

Please continue your prayers for Silas and for our family.  They mean more to us than anything else.  I will try to post an update tomorrow once we know more.

We Have a Diagnosis

We just returned from our appointment at the Fetal Care Center.  The test results did come back positive for a viral infection called cytomegalovirus (CMV).  CMV is the most common congenital (present at birth) infection.  50-85% of all adults get CMV before the age of 40 (it is that common), but most don't even know it.  At some point during the pregnancy, I was infected with CMV, and then the baby also became infected.  The doctor said I could have gotten the virus from anywhere (a child, a gas station, etc.) and that people who are infected rarely even know. 

The risk is that the developing baby becomes infected and the average transmission rate is 40%.  Of the 40% of babies who become infected, only about 10% show signs of congenital CMV, which is what we are dealing with. 

At this time, there are no known or approved treatments for congenital CMV.  We do know that our baby is trying to fight a pretty severe infection and is in that 10% category of actually showing signs of congenial CMV. 

The doctor was pretty straightforward and said that the infection could get the best of the baby and he could pass, or he can keep trying to fight it off.  If he does make it to the point of a delivery or full term, there is the likelihood that he will develop neurological abnormalities such as deafness, blindness or mental retardation.  At this point it is clear that he is still very sick.

Is there anything we can do to help him?  Basically no.  She said that trying to drain the fluid would just cause the baby more distress at this point and will do more harm than good.  Is there anything I can do to improve the situation....take medications, bed rest, eat certain foods, etc.?  She also said no to that.  All we can do is wait and see.  She said that I will come in every couple of weeks to do a sonogram.  I asked if I could come back weekly instead and she agreed.  I have learned that it is maddening to wait two weeks between appointments, wondering if things have gotten better or worse.  She said that there may be some studies that we can participate in that are testing treatments, and we did let her know we might be interested in that.

I expressed my frustration that such a "common" virus does not have a vaccine or a cure yet.  She agreed and said that they are now researching/working on it. 

We did another sonogram and found that all of the same symptoms/issues were still there (fluid, bowels, etc.), but she also found increased fluid in the brain and calcification spots in the brain.  We do not know what stage of the infection we are in (beginning, middle, end, etc.), but because of the additional findings in the brain since our sonogram on Friday, it appears that the infection is still taking over and it is a full body infection.

He did change positions this time and was more sideways than breech.  And there has definitely been increased movement.  I am feeling more kicks and punches than ever and on a more consistent basis.  Whether this means he is getting bigger or stronger, I am not sure.

We have a lot of research we still need to do and are still trying to process everything.  I have read about very promising experimental treatments with hyperimmune globulin - an intravenous treatment.  And I have read about lots of amazing cases where babies were diagnosed with congenital CMV and given slim to none chances of surviving and/or being normal, but they did. 

I asked the doctor if she had ever had a case like this where the baby survived and turned out normal and she said no.  She recently had a case where a baby presented with the same symptoms as ours and was born prematurely with lots of complications.  The parents opted for "comfort care" and the baby passed shortly after being born.  She mentioned problems ranging from deafness to blindness to feeding tubes, etc.

We believe in miracles and the power of prayer and refuse to give up on this baby.  While we may have to make lots of decisions at some point in the future, right now - all we can do is hand it over to God. 

We plan to research more about CMV, and are open to hearing or reading anything that anyone else knows or finds out about it.  Your continued prayers and thoughts are also still needed, and we will continue to update the blog as we continue on this journey.

Appointment Update for Echo & Sono #2

We first met with the pediatric cardiologist this afternoon, who took a more detailed look at the baby's heart. She confirmed that the heart is enlarged and still has fluid around it.  While structurally it looked okay (all 4 chambers were there), she did say that one of the valves to the heart was leaking - she explained it to us by saying that it was almost like a back flow. She also said that the baby's chest was very compressed - probably because the excess fluid in the abdomen and chest are pushing everything up to where the heart is.  She had a hard time seeing the lungs and some of the features of the heart because of the way everything in the chest was compressed.  She did make clear that the heart is in distress.

Next we met with Dr.Yost (specialist like Dr. McGee) who started the Level II Sonogram.  She looked at everything again and took lots of measurements.  She saw the same issues with the bowels, fluid and heart that we saw two weeks ago.  She also thought there was something off with the brain.  The measurements show that the baby's development is about 3 weeks behind - almost a month.  When we asked what the most concerning problem was, we expected to hear that it was the heart or fluid.....to her it was that the baby was almost a month behind in development.

She wanted to have the baby tested for "viral" issues right away, and they took my blood and sent off the rest of the amnio fluid for what is called a "Torch Panel Test".  This panel of testing will screen for infectious diseases that can cause problems with the baby if the mother contracts them during pregnancy, such as:
Toxoplasmosis, CMV (Cytomegalovirus), Parovirus, HSV (Herpes Simplex Virus), etc.

With all the symptoms presented, this doctor was leaning towards CMV because of the small size of the baby - in medical terms the "intrauterine growth restrictions".

She made it clear to us that the baby is very sick, and that it is a whole body problem - not just one symptom causing all of the problems.  There is still a definite possibility that the baby will not survive, and if he does, it will not be without complications.

We are supposed to have these tests results back by Tuesday afternoon, and we already have an appointment scheduled for Wednesday morning.  And of course there is the possibility that these results will all come back negative as well, and we still don't know what is causing the issues.  It could still be a syndrome that we can't test for.

There are not many treatment options at this point, especially since we do not know what is causing the problems.  She said that this is something that has been happening for a long while - not just the last few weeks and that a lot of damage has already been done.

One current treatment option is to try to drain some of the fluid from the baby.  That can help to alleviate some of the pressure that the fluid buildup is causing, but it does not come without risks of course.  And there is always the possibility that the fluid could just build back up within a day or two.  That will be an option that we discuss with them next week.

He is still breech and in the same position as two weeks ago, however his hands and legs were quite active during both sonograms.  Both of the doctors made a surprised comment about how active he was.

Please continue to pray for the health of our little boy, for the doctors to figure this out, for the decisions we will have to continue to make, and for the strength for us to get through this.  We appreciate all of your love and support and will continue to update you with what we learn.