Hardest Day Yet

Today was a tough day. We had an appointment scheduled at Stanford (actually the Heart Center at Lucille Packard Children's Hospital) for a fetal echocardiogram. The procedure is done by ultrasound but it has to be done at Stanford because they don't have the fancy machine here in Santa Cruz. The echocardiogram is performed to rule out a heart issue as the cause of the cystic hygroma and the swelling in the body of the baby.

After the ultrasound tech spent what seemed like forever looking at the heart from about 20 different angles, the cardiologist came in and told us that the baby's heart is quite normal. She can't find any problems with the heart. We were relieved to hear this.

I don't remember exactly how she made the transition, but somehow the doctor transitioned the conversation from "your baby has a normal heart" to the subject of "fetal hydrops," which is the medical term for the swelling that has moved into the baby's body cavity. Although Dr. Taslimi had not actually used the term hydrops with us last week, I was suspicious that what he called "swelling" is also known as hydrops. I have read about hydrops but since I wasn't sure that our baby has hydrops, I didn't want to jump to conclusions and cause unnecessary stress for any of us.

So when this doctor mentioned hydrops, and in fact, said that our baby has "profound hydrops," it was overwhelming for us. For Juan this was new information and for me this confirmed my suspicions, but for both of us it was heartbreaking. After mentioning the hydrops, the doctor wanted to make it clear that we understood that babies just don't survive hydrops. It could be caused by many things (infections, anemia, chromosomal abnormalities, etc.), but generally it's not survived.

Our hearts are breaking, and the thoughts and feelings we are experiencing are difficult. All the doctors say, "We could see a miracle," but you can see sadness behind their eyes. I wonder what it must be like to be in their shoes, to have seen people in this situation over and over again, and to have to talk to us when we are going through it for the very first time. We would love to have a miracle baby, but it just seems like the odds are against us at this point. And while we do believe that God could heal our baby, we also know that He doesn't have to.

And even though our hearts our breaking, we still have hope. We know that our hope lies beyond our current circumstances. We still believe that God has allowed us to be on this journey, and we believe that He will take care of us no matter where this road takes us.

Update after our last appointment

Yesterday, we had an appointment scheduled with Dr. Taslimi for the amniocentesis test. We went in bright and early at 8:40 and got in pretty quickly to see the doctor. As usual, they did an ultrasound right away and we could see the baby moving around, but other than that, our untrained eyes didn't notice anything unusual.

Dr. Taslimi came in a few minutes later and told us that the swelling is still there and, in fact, it has now also gone into the body cavity, which means that there is swelling in and around the baby's organs. He did not come out and say anything too blatant, but everything he said indicated to both of us that this is pretty serious and not a good sign at all. He did say, "we can still hope for a miracle." I thought that was an interesting choice of words coming from a medical doctor, but I also inferred from the statement that a miracle is what it would take for the baby to do well (or maybe even survive?) under these circumstances. At this point, I had started crying, but Juan was there holding my hand and the doctor, ultrasound tech, and genetic counselor (who were all in the room with us) were very kind and supportive.

Next we transitioned to the conversation about the amniocentesis procedure. The doctor said that the inner sac still has not expanded to fuse with the outer sac, so the procedure is still a bit more complicated than normal, but he also did not see any benefit in waiting to do the procedure. They left Juan and me alone for a few minutes to discuss this, and we decided to go for it. We had discussed the benefits of the procedure at length during the previous week and believed that the results could provide information that will help us in the pregnancy, delivery/birth, and early days of life for this baby, so we thought it would be best to go forward with the test.

The procedure went fine - it only lasted about a minute, and it did involve a little bit of pain, but mostly it was a very unusual sensation. I know that Dr. Taslimi is a very experienced doctor and I felt very comfortable with him performing the procedure. We won't get the results for 2 more weeks (as long as everything goes well with the cells growing more cells), and we already have an appointment scheduled on July 30 for another ultrasound and checkup and to discuss the results of the amniocentesis. (We also have an appointment on July 23 for a fetal echocardiogram.)

This was easily the most difficult appointment we have had in this process. It seems like hope is rapidly decreasing. Statistically, there is very little chance that the swelling will go down at this point, and there is also a very good chance that the baby won't survive the pregnancy.

We have had a pretty good weekend since the appointment. I am supposed to lay low for 2 days following the amnio procedure, so Juan has been taking good care of me AND Olivia. I've got lots of rest and a few "sitting down" things done around the house. Friday was a tough day emotionally, but slowly we are starting to feel a sense of peace again as we once again are reminded that God will take care of us and provide what we need, no matter what happens with this baby.

Oh...one more thing! I forgot to mention that we did ask Dr. Taslimi if he could tell the gender of the baby, and he said (close your eyes if you don't want to know...) it's a girl! It's exciting to know that it's a girl, and soon we are going to choose a name. We'll definitely post the name on the blog when we decide. Any suggestions???

Tomorrow at 8:40 am is the test...

So as tomorrow approaches I (juan) begin to feel a little more nervous and scared. I have really been asking God to reduce and completely remove any trace of the cystic Hygroma and tomorrow we will find out if there has been any change. We've had many good days and a few bad times in between. As I think about it I am not sure if all the good days are because we don't think about the baby's situation or if it's because we have truly come to accept God's gift in whatever form He chooses to give it to us. I am excited about the new life and I can't wait to find out if the baby is a boy or girl so we can choose a name. This will be a short post from me. We will post an update tomorrow sometime after the test. Please pray for the baby and us. - juan

Just for Fun Post!

Since lately all my posts have been pretty serious (and appropriately so), I thought I would do a post just for fun.

And speaking of fun, our family has been having LOTS of fun lately. It's summer at Mount Hermon which means lots of things: Juan BBQs at the Family Camp BBQ most Sunday nights (for about 600 people!), Olivia and I go to "parent and baby" swimming lessons 2-3 dyas a week, and we have a "Family Group" of summer staff who we get to hang out with once a week. Generally there are just people just about everywhere we go, and we are definitely staying busy and having lots of fun!

Here are some recent photos of Olivia having fun at home this morning:

Amnio Postponed

We went in to see Dr. Taslimi this morning, and after an ultrasound and a few questions, Dr. Taslimi, Juan and I decided to postpone the amnio procedure for 2 more weeks. Other than the minor scheduling issues, we've decided this is for the best because there is a possibility that if we had done it today, we might have to do it again in 2 weeks. This is because the possibility exists that the baby's cells in the amniotic fluid would not be developed enough to grow more cells to perform the test. In another 2 weeks, this is not very likely.

So...we wait again. While I'm confident that this is a good decision, I am a bit frustrated that it came about in this way. But I trust that there must be a reason. I'm trusting that God is in control, and whatever the outcome, He will provide what we need to continue on.

Thanks for your support and prayers. Our new amnio date is July 16, and in the meantime we have an appointment with Dr. Lawson, our ob/gyn. Pray for peace for us and for healing for the baby.