Optimism

Today, we left our appointment feeling optimistic.  The mass measured SLIGHTLY smaller.  The previous CRV ratio was 2.1 and today it was 1.97.  Dr. Nyholm was confident that she had consistent measurements and is also optimistic that we will continue to see a decrease in the next few weeks.  In other CCAM cases, a decrease is typically seen around 26 weeks.  (We're currently 24 weeks 4 days.) There was also no indication of hydrops.

They took growth measurements today. Baby Zins is weighing in at 1 pound 9 ounces. Besides the CCAM, everything looked great and was normal.

Once a month, a team of specialists from the University of Minnesota meets to discuss high risk cases.  Dr. Nyholm informed us that they are meeting soon and we're on the agenda.  While we wish we weren't in need of a team of specialists, it's comforting to know that a team of people with different experiences and areas of expertise are looking at our case and discussing future treatments and interventions if needed.

We never sleep well the night before an appointment.  We're never sure what news we will find out or what decisions we'll have to make.  After today's appointment, I think we both felt like we could finally breathe.  A small weight had been lifted off of us.  While we still have a long road ahead, we're thankful that some of our prayers have been answered.  If we make it through the next few weeks, I should be able to carry our little girl to term.  Because her lungs have been squished, this is the best scenario for her and the lungs to "catch up".

We can't say thank you enough for reading and for keeping us in your prayers.  Your kind words, encouragement, and support mean the world to us.

God's Blessing to You,

Scott & Sarah

Friday Appointment

I didn't get a chance to write on Friday.  After the appointment, we were busy trying to get ready to head to Fargo for my "little" brother's wedding.  It was great to see my family and so many of my friends.  At times, it's overwhelming to think about all of the people thinking and praying for us and our little one.  Thank you!

The mass was the same size on Friday and there was no sign of hydrops.  This week, we met with Dr. Nyholm for the first time. (The clinic has 3 doctors that are on rotations between being at the hospital and clinic.)  She said that at this point in the pregnancy if hydrops formed she would recommend fetal surgery to remove the CCAM rather than delivery.  We feel better about having another option besides delivery at this point in the pregnancy.  Unfortunately, we'd have to travel to Cincinnati, San Francisco,  or Philadelphia for a center that performs fetal surgeries.  Of course, if faced with this we'd have to make a tough decision about what to do.

We're thankful for each day that I'm able to carry her and she has the chance to grow.

We're back on Tuesday.  I believe they are planning on doing growth measurements as well so we should know how big she's getting.

Much love,

S & S

A Tough Day

At today's ultrasound we learned that the mass had grown.  They measure the mass by finding a CCAM volume ratio (CRV) which is found by dividing the CCAM volume by the head circumference (to correct for fetal size).  When this journey began the measurement was 1.1.  Six days later it was 1.6 and maintained that size until last Friday.  Today, the CRV was 2.1.  It was hard news to take in.  The biggest worry continues to be that hydrops (fluid in lungs, stomach, or under the skin) will form (indicating heart distress) and the larger the mass the more likely this is to happen.  At this point, if hydrops form they would want to deliver.  This scares me so much because we're only 23 weeks 4 days along.

Here's what we're praying for:

• May the heart continue to be strong and handle the stress from the mass pushing on it. (No hydrops!)
• May our little girl GROW, GROW, GROW!
• May the CCAM get smaller.

 We're back to the doctor Friday morning.

No New News...

Just a quick update today.  Everything was still the same at the ultrasound.  The mass was the same size and there was no sign of hydrops.   That makes 10 days that it's been the same.  Today marks 23 weeks into the pregnancy.  We'll take staying the same over growing, but it would be really nice to move out of the danger zone of forming hydrops.  If it could get just a bit smaller we'd move out of that range.

We're excited to have company at our house this weekend.  My college friend, Nicole, her husband, and our goddaughter are coming from Madison to visit.  It should be a great weekend full of fun and laughter.  Just what the doctor ordered.  : ) 

Our next appointment it on Tuesday.  Until then... 

Have a great weekend!  

Love,

Scott & Sarah

Ultrasound #5 and ECCO

We had two appointments today.  We started our morning having ultrasound #5.  We learned that nothing had changed since the last ultrasound.  Obviously, we wanted to hear that the mass has decreased in size, but we're encouraged that it has remained stable for 8 days.

We also had an ECCO at the University of Minnesota.  An ECCO is simply an ultrasound that can look at the heart closely.  A pediatric cardiologist looked at the images and told us that the heart looked great.  It has developed properly and is functioning correctly.  This was a huge relief.  The only abnormal part is that it's been pushed to the right side of the chest cavity by the mass.  We don't need to follow up with the cardiologist (thank goodness!).  She does want to do another ECCO when baby Zins is born.

I also met with my regular OB/GYN this week.  She encouraged us to move forward and change our plans from delivering in Maple Grove to delivering at the University of Minnesota.  We're feeling really good about this decision and have one more thing that is certain in such uncertain times.  It makes me feel comfortable to know that our baby will have the right doctors and machines available if she needs them.  

I almost forgot!  During the ultrasound, the technician switched over to 3D mode.  The picture above was taken in 3D.  She was moving around a lot so it's a little blurry.  (Scott says she looks like an alien!)  Check out her eyes, nose, and mouth.  She loves having her hands up by her face!

We're still praying that the mass grows smaller and our baby girl grows and grows.  Growth will help give the chest cavity more room even if the mass doesn't get smaller.

Ultrasound #6 is on Friday.

Much love,

Sarah

Neutral News...

Are the steroids working?  The CCAM didn't get bigger, but it didn't get smaller either.  Right now, it's holding steady.  The steroids will continue to work for the next two weeks so we're hoping this is a sign that they are trying to do their job, but just need some more time to work.  (The last shot was  given on Wednesday.)  We're praying that the mass has plateaued and is going to decrease.

The current size of the CCAM is on the border of being very severe.  In other cases, with a CCAM this size or larger there is a higher chance of the developing hydrops (fluid around other organs). Most often this is a sign that the heart is in distress. This would not only be dangerous for the baby, but also starts becoming dangerous for me.  In some cases, the mother's body starts to mirror the babies and develops fluid as well.  They want to monitor us both closely so we'll be in for ultrasounds twice a week until the CCAM decreases out of the danger zone.

The MRI results were also discussed.  They confirmed the doctor's diagnosis that it is a CCAM.  The only "new" information was that the size of both lungs are very small.  (Not a big surprise.)  We really need the mass to go down so the lungs have room to grow before she makes her big entrance into this world.  

We discussed so many "what ifs" today with the doctor.  The range of what could happen is gigantic.   It's hard, but the only thing we can do is wait.  We're 22 weeks along.  In other cases, the CCAM starts to decrease on it's own around 26-28 weeks. 

So now we just wait...and pray. 

Our next appointments are on Wednesday.  Until then, thanks again for reading and keeping us in your thoughts and prayers.

S & S

Small Spaces and Shots

Our day started at the University of Minnesota Children's Hospital where they performed a fetal MRI.  I was quite anxious about how it would go.  Repeatedly, nurses asked if I was bothered by small spaces.  The only small space I could think of that I had been in was a tanning bed!  Tanning doesn't require you to lay perfectly still or last very long though.

It ended up being fine.  I just closed my eyes and concentrated on my breathing.  Of course, the baby wasn't sleeping during it (Not that I blame her with all of the noise coming from the machine!) and was moving all over the place so it took about an hour to complete. 

We haven't gotten the results back, yet.  Basically, our doctor ordered them so she could see the baby from all angles.  During an ultrasound, they only can see from the front side of my body.  Hopefully, we'll hear the results tomorrow and they will confirm what we already know.  The best part of this appointment was seeing the images.  They were so clear!  Our little girl was sucking her thumb today.

Our second appointment was an ultrasound at the Specialty clinic in Maple Grove.  The ultrasound showed that the mass (CCAM) had grown a few millimeters.  The doctor's fear is that if it continues to grow it could start to affect other organs by causing a fluid build-up around them. This would not be good.  Right now, the other organs look great.  There is no worrisome fluid anywhere. Today,  I received a steroid injection that will pass to the baby in hopes that it will stimulate the growth of good lung tissue.  The doctors hoping if the lung grows it will "take over" the mass. 

Tomorrow, I go in for another steroid shot.  Friday is another ultrasound to see if the steroids worked. 

Thanks for reading!  We'll keep you posted.  We feel your love!

20 Week Ultrasound

The baby's profile.

Baby foot!

Our 20 week ultrasound was on January 28th.  It was really exciting to "see" our baby.  However, we were not prepared to hear that something might be wrong with our little one.  The information given to us at this appointment was very vague.  We could sense that they were hesitant to tell us much.  Super frustrating!  We were referred to a speciality clinic to have a higher level ultrasound.

On January 30th, we went in for another ultrasound.  It's incredibly amazing the technology medical clinics have.  This ultrasound was able to detect blood flow.  Again, they performed a full body ultrasound to look at everything.  We were told that a doctor was watching the ultrasound in another room as it was being performed.  The frustrating part is the technician can't tell you if anything is abnormal.  The worst part of the appointment was waiting to discuss the results with the doctor.

The doctor informed us that when our baby's left lung was developing, it skipped a step and formed a mass of lung tissue that will never function as lung tissue.  (A lung has also formed.) The mass is known as a CCAM.  The CCAM is causing the lung to swell, which has caused the heart to be displaced.  Normally, the heart is located in the left side of the body, but because the lung is so large it has pushed it to the right side of the body.

In most cases, the CCAM decreases in size on its own. This is the best scenario.  Then, around 2 years of age, they would remove it using a minimally invasive surgery.  As it grows, it could put the other organs in danger because they won't have enough room to develop properly.

If you're interested in reading more about CCAMs, I found these sites to be helpful.
Boston's Children's Hospital
CHOP

What are the next steps?  For the next 9 weeks, I will be going in for a weekly ultrasound to monitor the size of the CCAM and make sure it's not affecting other organs.  I also have to go to The University of Minnesota's Children's Hospital for a fetal MRI and ECHO.  Our original plan was to deliver at the Maple Grove Hospital.  If things settle down, there still is a possibility that can happen.  Otherwise, we'll deliver at The U of M Children's Hospital where there are pediatric surgeons and machines that can help the baby breathe if needed.

This is certainly not what we were expecting to go through.  It's very scary, but we're trying to stay positive.  We'll take it one week at a time and pray that the CCAM gets smaller and the baby keeps getting bigger.  We're so grateful to have good doctors and are comforted that our baby is getting the best care possible.

We did find out some exciting news at our second ultrasound....its a GIRL!  : )

Keep our little girl in your prayers.  We have appointments tomorrow and will update the blog as soon as possible.

Baby Bump!

Check out the baby bump!  January 25th put the baby at the halfway mark of 20 weeks.  It also meant that we would soon be having an ultrasound.  It was exciting to think about being able to "see" our little one.