28 week appointment - the good news with the not so good news

We are officially in the 3rd trimester!  Today we had our 28 week appointment.  For me, that meant the first time I could combine a regular office visit with our specialty care visits, which has helped with my schedule tremendously!  Lucy continues to be on track from a physical development perspective, weighing in around 2 lbs, 9 oz.

We got some great news at the beginning of the appointment - Lucy's ventricle and head size have stabilized - her ventricle measurements were similar to last appointment at 24 mm and her head continues to be about 2 weeks ahead of growth charts, which again, is the same as last appointment.

Unfortunately, the good news ended there and we found out that I have polyhydramnios, which means I have too much amniotic fluid, causing my uterus to be larger than normal.  Polyhydramnios can be caused by a variety of different things, some of the most common being gestational diabetes (negative in my case), unknown reasons, or most likely in our case a congenital defect, intestinal tract blockage or neurological abnormalities.  In our case, the doctor thought it was likely that Lucy has a neurological abnormality that has caused her to be unable to swallow the amniotic fluid properly and resulting in the excess being built up around her. 

While disappointing, this diagnosis is not completely a surprise for a baby with hydro, as we already know that her neurological development is hindered. 

This was a difficult message for us to hear; as parents, we never want our children to be unhappy, face hardships or be in pain.  However, we were reminded today that this is one of many complications that little Lucy will face from a health perspective. 

Treatment for polyhydramnios depends on how severe it is and how rapidly it progresses.  Our current course of action is to wait and see for two weeks, when my fluid levels will be checked again.  We are uncertain what (if any) impact this will have on Lucy's future development and long-term prognosis.

Your prayers are coveted as we continue to seek strength and peace throughout this time.

Staying positive

March was filled with too many dark days and I vowed when April came, that would be behind us and we would focus on accepting Lucy's diagnosis, learning more about it, and preparing for life after her birth.  Jason was home for a total of 6 days or something in March, so although we talked about what's going on, we haven't REALLY had the opportunity to talk all that much. 

We have, however, gotten much encouragement from friends and family and we know that everything will be OK.  In addition, we have the support of other who have faced similar situations and can talk about it with us.  We have been connected with another family who has a little boy with the same condition.  One of my previous co-workers has 2 little boys with health complications that were diagnosed in-utero.  

We are going to be parents of a beautiful baby girl who is already loved by many!

There are many times in my life that I have felt like God prepared me for the exact situation that I was facing at that moment.  This is no exception.  I am blessed enough to have connections to one of the top insurance providers in the industry - in fact, it was at their conference that I found out about Lucy's condition.  It is through them that I have been given a high risk pregnancy case manager to help Jason and I navigate not only the insurance hurdles that we have/will face, but also to help us research the best doctors to see in our situation and to be a constant resource to answer any questions that we.  We have already been referred to a wonderful perinatologist that practices very close to my office and have been assured that delivering at Presbyterian/St. Luke's in downtown Denver is best place for us to be. 

Much is life is not about what you face, but how you choose to face it.  We are choosing to be blessed.

Our 28 week appointment is on Tuesday, so look for our next update in a few days.

March 26, 2012 - 24-week appointment

We went back to the perinatal specialist for my 24-week appointment on March 26th. We had gotten smart and scheduled the appointment for late afternoon knowing that returning to work afterwards was emotionally impossible for both of us.

In the back of our minds, we both thought that maybe the first diagnosis would have been a mistake or that Lucy would have miraculous development in the past 3 weeks. However, neither was the case. Her development continued to be on course for 24 weeks, but her head was now measuring large - about 2 weeks ahead of schedule. Normal ventricles are around 6 - 8 mm; Lucy's were measuring around 24 mm. This is to be expected for hydro babies - since their ventricles are enlarged, brain fluid does not drain properly and just pools in their little heads. Therefore, throughout pregnancy, their heads grow at an accelerated rate - for them, it is actually a good thing, because it gives their brain room to expand along with the fluid. It is for this reason that we expect to deliver via C-Section.

Our doctor told us that we would have to deliver at a hospital in downtown Denver that has a neonatal brain surgeon on staff so that we can be prepared to have a shunt put in shortly after Lucy's birth and not have to transport her.

We again find ourselves frustrated at the lack of information about what to expect - we don't know if she'll be in the hospital for a week or a month after she is born. We don't know if she will have normal development or if she will be delayed. We don't know if she will have hearing or sight problems, like many other babies born with hydro. Our doctor told us that it is impossible to guess at her long-term prognosis at this point. He has seen babies with severe amounts of fluid have normal or near-normal intelligence and he has seen babies with very little fluid have severe handicaps.


I am comforted knowing that although no one here on earth can tell us what to expect, God knows:

Jeremiah 29:11 - For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future.

Tears and Explanations

After we learned of our baby's diagnosis, it didn't take long to settle on a name. We were going to call her Lucy. Not naming her at this point didn't seem right - we talked about her all the time and we knew that many would be praying for her over the next few months, and they needed a name to pray for.

We spent the next week after finding out crying and processing the news - sometimes together, sometimes apart. I found it very difficult to be apart from Jason and was incredibly anxious that he was coming up to his busy season of travel and would be gone for most of the month of March.

We told our families and close friends. I founds phone calls to be very difficult, because I would just sob uncontrollably and the person at the other end of the phone wouldn't know what to say. Email was much easier for me to deal with. Many people responded with emails, cards or phone calls, all of which I appreciated to no end. After about a week, I was able to talk about Lucy and her future and in a more logical, non-emotional state.

Everyone said things like, "It's going to be OK." And while I wanted to believe them, part of me wanted to scream, "Nothing is ever going to be ok again!"

March 5, 2012 - Confirmation of the Diagnosis

If you remember, when we found out that our baby's ultrasounds was abnormal, Jason and I were about 1000 miles apart - neither one of us at home.

I was able to get an appointment on Monday with a perinatal specialist that I was referred to and Jason was able to change his flight home to join me at my appointment.

We sat in the ultrasound room with the ultrasound tech for a very long time looking at our baby on the screen and wondering if she was ok. She took us through a lot of measurements and told us a lot of things that it didn't look like our baby had. We were feeling pretty optimistic until the doctor came in. He sat down, looked at the monitor for a few seconds and declared that although the baby's development was on course at this point, she had a "severe case of fetal hydrocephalus." He then proceeded to point out a black mass of fluid in her head where her brain should have been.

The doctor asked if we had questions - which we really couldn't wrap our minds around. He outlined options for us - terminate the pregnancy, more test to rule out other birth defects, etc. I was prepared for the question of terminating the pregnancy; Jason was not. I had read about it on several blogs over the weekend. However, terminating the pregnancy was not an option in our minds. We initially decided to opt out of more tests at that point and take a wait and see approach. Most of the tests offered were to discuss causes and try to get a clearer picture of her possible prognosis. However, since none of these would change my prenatal care at this point, we did not feel the need to pursue.

We held most of our tears until we made it to our car. I will never forget what Jason said as we struggled to pull ourselves together: "She may not be perfect, but she'll be perfect for us." And he's right.

We knew that we would need an inordinate amount of strength to get through this journey and that we could not do it alone.

Isaiah 41:10 Fear not, for I am with you; be not dismayed, for I am your God; I will strengthen you, I will help you, I will uphold you with my righteous right hand.

What is Fetal Hydrocephalus?

We are by no means experts, but have read a lot about it. The best place to go online for information that we have found is www.fetalhydrocephalus.com. There is some great information about the condition, research and many stories of families just like us, who have a baby with hydrocephalus. I've stolen their definition of hydrocephalus to use here:

The brain is constantly producing fluid (known as cerebrospinal fluid or CSF) as part of its normal daily routine. Under normal circumstances, this fluid is drained from the brain into the spinal canal and is reabsorbed by the body, keeping the amount in the brain in a constant balance. When normal drainage does not occur, or for some reason the brain is producing too much CSF to be able to drain through normal means, the CSF builds up in the ventricles of the brain and causes pressure. This condition is known as hydrocephalus. The most common form of fetal hydrocephalus is Aqueductal Stenosis. There is a narrow channel which connects the third and fourth ventricles of the brain to allow CSF to drain. This channel is called the Aqueduct of Sylvius. When this aqueduct is blocked, or was never properly formed, the CSF cannot drain properly and this condition is called aqueductal stenosis. Blockage of the aqueduct can be caused by a malformed aqueduct, a tumor, swelling due to infection or intraventricular bleeding. This blockage results in the enlargement of the ventricles. This type is generally not caused by chromosomal abnormalities.

The treatment for fetal hydrocephalus is typically a shunt shortly after birth. Brain tissue is much like a sponge in that it can compress and expand as the pressure changes. The key is that once the shunt is put in and the pressure is relieved you can start to watch how much the brain tissue expands. If it expands to something nearing normal volume then there is an 80% chance of normal or near normal brain function. If the tissue has been severely damaged and does not expand, then the outcome will be severe. There is no way to know in which category your child will be until the shunt is placed.

...and that is the most difficult part of this diagnosis...the necessity to simply "wait and see" with not confirmation of long-term outcomes.

February 29, 2012 - The Phone Call That Changed our Life

Typically, there is something exciting about February 29, right? It's Leap Day - and extra day in the year to spend doing something fabulous. February 29, 2012 found me in Austin, TX for a Health Care conference and Jason at the airport, on his way to Des Moines, IA for a wrestling event. I had just had my 20 week ultrasound 2 days prior.

I checked my phone between sessions and found a message from my doctor on my voicemail. I called Jason and told him I was a little bit freaked out because typically the doctor doesn't call - it's the doctor's office staff. I never understood the statement, "my life changed with a phone call" until I called her back.

She told me that the ultrasound results looked "abnormal." Of course, I wanted to know what that meant. I could tell the doctor was hesitant to tell me over the phone, but she told me that she wanted me to see a specialist - a "perinatal" - to look more closely at our baby's development. She was especially concerned with the size of the ventricles of her brain.

"What is that an indication of?" I asked.

And then she said the life-changing statement that still haunts me... "We think your baby has fetal hydrocephalus."

After hanging up, I googled hydrocephalus on my phone and read all sorts of extremely scary things about it. I called Jason shortly after and told him the news. I think we were both in shock and weren't sure what to do or say to eachother. The fact that neither one of us was home and that we were so far apart from each other made the situation even more difficult and we both suffered in silence for the next several days until we could be together and confirm the diagnosis.

Background

Greetings! We are happy that you found your way to our blog. Whether you are visiting because you know one of personally, or because you heard about our story, or because you are going through a similar situation, we hope that you will find it informative and encouraging.

Jason, Abby and Baby Lucy