Post - Op

I had been working on updating the surgery post and I wasn't able to upload it so I'll just start over in this post. 

On Tuesday, when Abby was moved to her room, they started getting her pain medications before the meds from surgery wore off.  She was given Tylenol and some morphine.  About an hour later, she still seemed uncomfortable so they gave her more morphine.  The two doses and whatever was left from the surgery knocked her out.  Around 4pm, the surgeon became concerned that she hadn't really woken up, yet.  She had opened her eyes for brief moments, but hadn't had any extended time where she was alert.  She also hadn't given any hunger cues.  They didn't want to try and feed her either until she was alert.  He brought a doctor from the PICU (pediatric ICU) with him to check her out.  He examined her and felt that she was going to be fine and was just taking longer to metabolize the morphine or it wasn't making her feel well.  As a precaution, they moved her to the PICU for the night in case she didn't wake up and needed extra help during the night.

Around 11pm, she finally opened those pretty blue eyes and was alert enough to eat.  Then, she rested comfortably though the night (except when the nurses bugged her!) and ate several times.  In the morning, we headed back to a regular room.  They took morphine off the list of medications she could have because of her reaction so she's been getting scheduled Tylenol and fentanyl as needed.

One of the things we didn't feel prepared for was the amount of pain she would be in.  The nurses have told us that this surgery is one of the most painful surgeries that there are.  The area around the ribs has many nerve endings resulting in painful healing.  She also has a chest tube in that is extremely uncomfortable.  When kids are able to talk, they complain about how much the chest tube hurts.  If we move her we try to be super careful because if the tube moves it sends her through the roof. 

We are waiting for the chest tube to be removed because it will make her so much more comfortable.  The chest tube has been draining fluid from that area and removing extra air.  I'm probably not going to explain this very well, but I'll try. When they removed her lobe, there was a leak that resulted.  They test for leaks during surgery so they know it's not a major pulmonary vessel leaking.  Basically, we are waiting for the leak to seal...aka form scar tissue.  The scar tissue will stop the leak.  This is pretty normal, but causing the tube to need to be in a bit longer.  : (  This leak is what's standing in our way to getting home!  We're hoping it seals up soon.

Abigail's one tough cookie!  She's been doing so well.  Yesterday, we each got one smile out of her.  Today, she's given us a few more and been interested in her toys.  Each day is getting a little better.

Hopefully, we'll be home soon!

Wednesday - Sleeping Comfortably

Thursday - Don't I look better?!?

Playing with daddy's iPhone on Thursday.

Surgery Day

There are TV screens to communicate where your child is at. Abby is at the bottom.  There are 2 screens full of kids having surgery today!

Time has flown by and Abby's surgery day has arrived. We arrived to the University of Minnesota Children's Amplatz hospital around 6:45 to check in and then went back with Abigail for pre-op. During this time, they took her stats and we were able to meet all the people that will be taking care of her. There was a team of anesthesiologists, several nurses, a family service advocate, and the surgeon.  Of course, everyone thought she was adorable. :) She did really well. She couldn't have anything to "eat" after 4:30 am so she ate right before that. You could tell she was getting hungry and a bit cranky because we weren't feeding her.

They aren't anticipating any problems so we are hoping that everything goes smoothly. The surgeon thinks this is the best age to have the mass removed because kids at this age recover quickly and seem to handle the pain better.

I'll keep updating this post as the day progresses by adding to the bottom. The nurse called at 9:10 and told us they had started 5 minutes ago and everything was going well. We're hoping to be reunited before noon.

UPDATE #1 - 11:00 am

The surgeon came to update us.  He's finished with the surgery and everything went well.  The mass was huge taking up three-quarters of her left chest.  He would expect us to notice improvements in her breathing right away. We're so relieved that everything went according to plan and that the mass is out of her body!!  Now, we're just waiting to be reunited with her in recovery. 

2 Months!

Two months on August 11, 2013! 

Abigail...

• weighs 7 pounds 13 ounces (0 percentile)  You are a peanut!  The first month you gained and lost weight and ended up weighing your birth weight at the end of the month.  We're happy that you've gained almost 2 pounds this month.

• is 21.5 inches long (11th percentile)  You've grown 2.5 inches since birth!

• has a head circumference of 38 cm (41st percentile). 

• eats 7 - 8 times a day.  You never mastered nursing so you're drinking expressed milk from a bottle.  This month you started using "big" bottles rather than the small ones you used in the NICU.

• received your first round of vaccinations.  You were given three shots that contained multiple vaccines.  The nurse was very fast, but you screamed.  Mommy started tearing up, too.  For the next few days, you were fussy and didn't eat well.

• met with the pediatric surgeon and had another X-ray taken.  Dr. Hess wants to remove the CCAM when you're three months old so surgery has been set for September 10th.  

• wears newborn clothing still. (You can also wear some 0 - 3 month outfits.) It's a good thing your cousin, Brie, was small and borrowed you her clothing.  Some of your newborn PJ's are getting too short.  You also are still wearing newborn diapers.  Mommy tried the next size and it wasn't pretty when you filled your pants! 

• went to Fargo for the first time.  You slept the whole way! You took in your first Street Fair and were spoiled by grandma and mommy.   You also met great-grandma Burkhardt.  She could have held you all day! It was a fun filled weekend because you also went to Crystal lake for the first time and met some more family members.  Some of your cousins were there and they adore you!

•  loves to play in her "gym."  You stare at the hanging toys and smile and talk to them.  You are  squirmy so when your arms and legs are moving around you hit the toys. Sometimes, you even get mad when mom or dad remove you from the gym.
  
  

• smiles all the time.  You're extra happy in the morning after you've had a bottle.  You also LOVE laying on your changing table.  Here's some favorites.

• 

  First captured smile with a camera!

  

  SMILE!

   

   

   

  
  

  has a few nicknames.  We call you "Abs, Peanut, Peanut Butter, and Abbers." 

• sleeps in a bassinet next to mom.   

• snuggles with daddy on the coach almost every night.  Usually, you both fall asleep!

• loves to stretch! It's so cute to watch.

• has beautiful blue eyes.  We think they'll stay blue. 

• AH!  I can't get rid of this bullet!  It's not suppose to be here!

  
  

  
  

  
  

  
  

   
• went to Stillwater.  It was the first time mom and dad took you to a public place for the whole day.  You were a great baby and we realized we could start doing more things.
  
   
• is the biggest and best blessing in our life.  We love you so much!

Surgery Date Set

Smiley Abby!

Abby's already 7 weeks old!  She continues to be asymptamic in regards to her CCAM.  We're thankful for that!  However, after meeting with the pediatric surgeon on Monday, he would still like to remove it when she's three months old.  They took an x-ray that showed that the right lung (her good one) has been growing and developing since birth.  This is positive news because it had been smaller than normal due to it's shift against the chest wall.  They've had success removing masses with similar sizes at this age.  It will allow the heart to shift back into place and to give both lungs time to develop.  Lungs continue to develop until kids are about 7 so the more time she has the better.

I look so cute, but don't take my picture!

The CCAM is in the upper lobe of her left lung so they will remove the entire upper lobe of her lung.  The body is such an amazing thing that the lower lobe will take over and continue to develop in its place.  She shouldn't have any limitations once it's out.  The surgeon said you'll never know she had an issue.  We hope that's the case!  The surgery is set for September 10th at the University of Minnesota Children's Amplatz hospital.  She'll be in the hospital for only a day or two after surgery.  While we'd rather that she didn't need surgery so young, we think we'll feel a big relief that the mass is finally removed from her body and we won't have to worry about it anymore.

Abby's been doing well.  If you've met her, you know that she's still a little peanut.  We've had some problems trying to breastfeed.  I'm too stubborn to give up, but it's been a rough journey.  The first thing they should tell moms at breastfeeding classes is how hard it can be.  Our feeding schedule is a bit intense, but we've got her gaining weight now which is the important thing. 

We'll be sure to keep you updated the day of the surgery. 

Much love,

Scott, Sarah, & Abby (and Max - he's been feeling a bit left out) : )

C'mon, mom!  Enough with the pictures! 

Newborn Photo Shoot!

Abigail had her newborn photo shoot at 10 days old.  Get ready for her cuteness!

 Thanks to Elyse Rethlake Photography for capturing Abigail so well!

Too good to be true...moved to the NICU

On Wednesday the 12th of June, when Abigail was less than 12 hours old, an x-ray was ordered to look at the CCAM in her chest.  When the results came back, we received a call from the doctor.  They found pneumothorax.  It happens when air leaks into the space between the lungs and the chest wall.  While I was still on the phone with the doctor, a NICU nurse was in the room ready to take Abigail to the NICU for observation.  The urgency of all of it was the scariest part.  We weren't prepared for this complication, but it was most likely related in some way to the CCAM.


Abigail was hooked up to different monitors to observe her oxygen levels, heart rate, and her respiration rate.  (This had been higher than normal as well.)  They also put an IV in, which is the splint looking thing on her hand.  Eventually, they also put in a feeding tube through her nose. Because they thought she was working harder than normal to breathe, they didn't want her to be breastfeeding.  She was still able to get my milk through the tube.  The first 24 hours they basically monitoring everything.  She had blood taken several times to check her gas (oxygen and carbon dioxide) levels.  She never needed any assistance breathing so that was a good thing!  She also had several x-rays to monitor the pneumothorax. She was able to resolve this on her own as well and didn't need any interventions to fix the problem. 


While Abigail was in the NICU, we were lucky enough to get a boarding room in the hospital.  It would have been so hard to leave the hospital without her.  It also made it easier to get her the milk that I was pumping and to feed her when I was allowed to breast feed again.  We were shuffled around quite a bit, but it was worth it to be able to be near her.

Her last hurdle in order to go home was feeding.  She was on a three hour feeding schedule and had to take in a certain amount at each feeding.  The nurses would remove everything from her stomach via the feeding tube to see what she hadn't digested from the last feeding.  Then, I would breast feed her.  When Abby was done feeding, they would remove the breast milk to see how much she had taken in.  They would put it back in her and then either gave her milk I had pumped or formula to make up the difference.  I hated watching it because it seemed like it would be so uncomfortable, but Abby didn't seem to mind it.

I graduated to a crib and was allowed to wear clothes!

Finally, we were allowed to room with Abigail again.  We had to show that we could feed and care for Abigail with limited assistance from nurses.  During this time, we could feed ad lib, but did have to meet a certain intake amount every 12 hours.  The feeding tube had been removed so now to monitor what she was eating, we had to weigh her before and after feedings.  Between breast feeding and bottle feeding, we were able to meet the intake amounts.  On Monday, June 17th, we were able to go home.

We're thankful that Abigail had such great care and was monitored closely, but we were so happy to be home!  She'll be continued to be monitored closely in the next few months.  We'll go in often to see her general pediatrician for weight check ups and we'll also see the surgeon on a monthly basis. 

Speaking of the surgeon, he decided that he would like to remove the CCAM when Abby's 3 - 4 months old. With masses the size of hers, they have had great results removing at this age. (Babies go home a day or two after surgery!  I can't believe it!)  The mass is in the upper left lobe of her lung so he will remove this portion of the lung.  Lungs develop until children are 6 -7 years old.  Hopefully, this will give both of her lungs more time to develop and get bigger.  Her right lung is small because it was compressed against the chest wall due to the size of the mass.  We're also hoping her heart moves back into the correct position. 


I hope to continue to update the blog in a more timely manner.  Abigail is so precious I just have a hard time not cuddling her up all the time!  I rarely have my hands free.  : )



Thanks for keeping us in your thoughts and prayers as Abby made her grand entrance into the world.  It was a time of uncertainty and we're so happy to be home with a "healthy" little girl now.


Please keep all of the other babies and their families in the NICU in your prayers.  It's a stressful place to be and many of the babies are facing major health challenges. 


Love,


Scott, Sarah, and Abigail

Welcome to the World!

Abigail Rae Zins

On Tuesday, June 11th at 8:07 pm, Abigail Rae Zins entered the world weighing 6 pounds 2 ounces. The most beautiful sound we've ever heard was her little cry.  We knew it was a good sign if she was able to do that!  She was so alert for the first few hours of life.  Her blue eyes were wide open taking in everything.

We began our day at our usual Tuesday appointment.  There was a possibility that we would need to be induced so we were prepared with our bags.  The doctor decided that it was time to meet baby Zins and we were sent over to labor and delivery.  (My amniotic fluid continued to get lower with every appointment.) I was apprehensive about being induced because of the possible complications that can come along with it and how long it can take (for some people days!).  However, it took only 2 doses of Cervidil.  My contractions started really picking up around 4 pm and by 8 she was born.  Labor progressed so quickly!

We were thrilled when the NICU team checked her out after birth and said she looked great.  They didn't even think it was necessary to bring her to the NICU for observation.  We never expected to have her room with us so it was a wonderful surprise. 

Our prayers were answered when Abigail entered the world safely.  We were feeling so blessed to have a beautiful daughter that was able to breath on her own.  Little did we know that the next day we'd be facing another unexpected complication...

We Made It...

to full term!  Technically, a baby is considered full term if they reach 37 weeks.  We're feeling blessed that the "bun has stayed in the oven!"  Especially after thinking we were going to have to deliver at 20 some weeks.  (A doctor even told us he didn't think we'd make it past 22 weeks.)

We have no real news to report, but thought I'd do a quick update.  Baby Z continues to do well.  In the last few weeks, the mass has been stable. It doesn't appear to be getting smaller, but is staying the same.  The CRV has been measuring between 0.40 - 0.60.  (It has gotten smaller, but the ratio has gone down because her head has gotten bigger, too.) The doctors tell us the last baby to be delivered with a mass about this size came out screaming and is doing well.  That's what we're hoping for!

Every week, we see her continue to practice her breathing.  This is our biggest concern so it's reassuring.  Since our hiccup with her heart rate, that has been normal as well.

This weekend, we worked some more on her room.  It's coming together!  We've got such generous friends, family members, and co-workers that have helped us get ready for her arrival.  She's already a spoiled little girl! 

 

 We continue to pray for strong lungs and a safe arrival. 

Thank you for being part of our journey.  We're almost to the end!  

Scott & Sarah

Another hiccup...

On Tuesday, we went to our weekly ultrasound in Maple Grove.  It was our last scheduled appointment there as our next ones are all at the U of M.  We've had so many ultrasounds that we know what normal is so when the tech was doing the heart rate readings and they came out at 175 or higher, we knew something wasn't right.  At this point in the pregnancy, her heart rate has been around 150.  It would be okay if it was spiking and going back to normal, but they were concerned that it had been high for a prolonged period of time.  Plus, the amniotic fluid was lower than normal (still in the normal range, but lower than it has been).

After the ultrasound, they hooked me up to a fetal non-stress monitor.  They put two belts around my belly.  One belt measures the baby's heart rate and the other belt measures contractions.  (I wasn't having any!)  Her heart rate continued to run high so they decided to send us to the labor and delivery at the U of M to be monitored further and to have blood tests run. They wanted to be sure that I didn't have an infection that was affecting her heart rate.  Everything during the ultrasound looked good so they were concerned that there was no explanation as to why her heart rate was running high.

Fetal Non-Stress Monitor

We spent the day watching this monitor.  By the time we got to the hospital and were hooked up, her heart rate was back in the 150s.  It was normal nearly all day.  There was another 20 minute period where it was running high, but then went down again.  Dr. Prosen said her heart rate was text book and exactly what they would expect.  She discharged us around 6:30 pm and wanted us to go back to the Maple Grove clinic on Wednesday to have things checked again.  They are being extra cautious because of everything else that this little one has been through.

Today, everything was back to normal.  The heart rate was in the 150s again and she scored an 8/8 on the biophysical profile.  This looks at her heart rate, muscle tone, movement, breathing, and amniotic fluid.  Dr. Nyholm said that when she watched the clips from Tuesday's ultrasound, she noticed that the baby was doing a lot of practice breathing.  That could have been part of the reason for her increased heart rate.  We'll never know for sure!

Scott was freezing all day!

Scott refers to the day as our practice run to the hospital.  He got to see some ladies in labor that were waiting to be admitted to a room.  He left our room to find himself some food.  When he came back, he told me how there was this lady out there who did not look like she was doing well.  ; )  Labor will do that to a gal!  We also know what we should bring with us to be more comfortable.  Hopefully, we will not return to the hospital until the big day.

A few people to thank...

**My co-workers!  They have been so supportive through all of this.  Yesterday, I was not planning on being gone and they took over my class and planned the day for me.  THANK YOU!
**The staff at the Maple Grove clinic.  It takes special people to work with families that have high risk pregnancies.  Thank you for always being so kind and caring.


Thanks for reading and thinking of us.  We hope this girl decides to stay put for a few more weeks and quits giving us scares!

Scott & Sarah

PS: The Zins' family hosted a shower on Sunday.  It was full of fun and laughter.  They were so generous to baby Zins.  She's lucky to be joining such a great family.  Jane (Scott's aunt) blogged about it if you're interested in seeing some pictures.  She's so crafty and creative!!
Check it out at:
http://pathleadinghome.blogspot.com/

6 more weeks...

I missed posting an update last week.  (My Master class meets on Wednesdays.  I finished another class last week, but had a presentation to work on so I didn't get around to blogging.)  However, there wasn't much to report.  Our appointments have finally become pretty routine and uneventful (Thank God!).

For so many weeks, we were focused on the CRV number.  Now, the measurements aren't as important for several reasons.  One of the main reasons is due to the shrinking of the mass.  As the mass regressed, the shape changed so the points they had been measuring from are no longer in the same place.  It's hard to compare the current measurements with the old ones when the data points are different.  The main thing is they can tell it's getting a LITTLE smaller each week.  

As she continues to grow, the mass is getting harder to see and measure clearly and accurately.  Her ribs have gotten bigger and create shadows over the area.  She's also practicing breathing a lot.  To do this, she uses her diaphragm and as it goes up and down quickly it pushes against the mass.

Each week, they are checking to be sure she's not in distress and that she's doing all of the things that babies at her gestational age should be doing.  Everything has been looking great!

They did growth measurements again today and she's weighing in at 4 pounds 4 ounces.  The doctor did say that was smaller than most babies at this age, but that compared to her last measurements she was growing appropriately. It's looking like she'll be a little peanut unless she really starts packing on the pounds.  She's been pretty consistent at gaining 1 pound every 3 weeks.

CCAM on 3/19/13

As I was going through our medical records for her, I came across a CD that they made for us to take when we visited with the surgeon.  I hadn't looked at the images, but they were all of the mass.  This was from an ultrasound on March 19 (27 weeks gestation).

Can you tell what you're looking at!?! I'll do my best to explain. This is her chest cavity. The bright white on the left side is the mass.  It's marked with yellow lines that make an x across it.  This is how they measured it.  The black part to the right of the mass is the heart.

Weeks before this picture, it was even larger and the heart looked so small because it was crushed against the chest wall.  When we see images now, it looks like the rest of her organs fought it back and started to take over.  It doesn't look SO big and scary anymore.

Thanks for praying for us and our little girl.  Blessings have been raining down upon us.

Much love,

Scott & Sarah

No News is Good News

We're hoping our theme for the next 8 weeks is No News is Good News.  Hopefully, we'll have some pretty boring posts on the blog for the next few weeks.  : )

Our ultrasound today showed that the mass was measuring the same as last week.  Of course, we always want to hear that it's gotten smaller, but we'll take staying the same as long as it's not growing.  Baby Zins is doing all of the things that babies at her gestational age should be doing such as moving around, taking practice breaths, etc.

We met doctor #6 today.  I think we only have one person left in the practice to meet.  This doctor isn't typically at the Maple Grove clinic, but we'll probably see him at the U in the coming weeks, too.  He was familiar with our background, which was nice.  Even though it's preferable to see the same doctors,  we don't know who will be on service when we actually deliver so there is a plus to meeting all of the whole crew.  He was very pleased with where baby is at so that made us feel good.

We'll continue to go in once a week (recommended by this doctor) to be monitored.  We don't expect any complications to arise, but they want to be extra cautious, which is fine with us.

Hopefully, winter will leave by the time she arrives!  We're waiting impatiently...

At least the sun shined down on us today,

Scott and Sarah

NICU

Look at my cute nose and lip!  My cheeks look like they'll be good for squeezing, too.
Today, I'm 30 weeks 6 days. 

We were back at the University of Minnesota today for an ultrasound and a meeting with the director of NICU as well as a tour of the NICU.

At our ultrasound, the nurse told us that we had a new doctor and it was his first day at the clinic.  I'm not sure what our faces looked like, but they must have had a "Seriously?!" expression because she quickly added that it wasn't his first day as a maternal-fetal medicine doctor, but that he had just joined the practice.  Baby Zins was in a weird position today where the left side of her body was facing my spine so they couldn't get a very good view that wasn't shadowed.  He didn't share any measurements with us, but everything regarding the baby not being distressed was fine.  They did growth measurements again today and she's now 3 pounds 6 ounces.  She's gaining almost a pound every three weeks.  The doctor also said we could probably move our appointments further apart, but we decided to keep our appointment in Maple Grove next week with the doctors we're familiar with and see if they think the same thing.  (We know he is more than qualified, but we're hesitant as we're not familiar with him.)

We also met with the director of the NICU ( a neonatologist) and discussed possible things that could happen after birth.  All that we know for sure is that she'll be evaluated and monitored in the NICU shortly after birth.  They'll keep close tabs on her breathing, oxygen levels, etc.  Dr. George gave us the spectrum of possibilities we could be facing at birth.

The best case scenario would be that she's able to breath on her own when born and her oxygen levels are good.  They would still monitor in the NICU for at least 24 hours, but if she was still doing fine she would move back to the nursery for healthy babies.  She would come home with us when they discharged me.

A more likely scenario is that she'll be able to breath on her own, but might need some assistance to reach adequate levels of oxygen or to help slow her breathing down to a normal rate.  Then, they would work to get her breathing on her own.  He estimated that with a scenario like this she'd be in the hospital for 1 - 3 weeks.  While they don't have rooms to board in with the babies, they do have places to stay in the hospital so we can stay nearby.

The worst scenario would be that she has major problems breathing on her own and needs ECMO to support her. ECMO is similar to a heart and lung machine, but for infants.  Basically, it takes over the function of the lungs. If she was having major problems she would need surgery, too.  This would extend the hospital stay.

The main goals when we're in the NICU will be to get her to breath on her own and to feed well.  Once we can do both of those things, we'll get to go home.

There is no way for the doctors to predict how her lungs will react when she's born so we just have to be ready for any scenario and hope and pray for the best.  I think we're all feeling good that the worst case scenario has a low possibility of happening if we carry to term.  

People often comment that we have such positive attitudes about all of this.  I think we owe a lot of that to all of you.  You're positive thoughts and comments have helped us keep our heads above water.  Thank you for helping us through this difficult time.

Until next week,

Scott & Sarah

Feeling Good...

We had a full day of appointments at the University of Minnesota today.  Our day began with an OB visit for me.  I had been going to another clinic for my OB care, but they'd like to take over now that we're in the home stretch. I failed my first glucose test and had to do the three hour test on Friday.  We were relieved that I passed and we don't have to worry about that. 

Then, we had an ultrasound done.  The mass has continued to shrink.  Our last ultrasound was a week ago and we could see that it looked smaller today.  The heart looks SO much bigger.  We're truly blessed that after being scrunched for so long it was able to keep functioning properly.  On the right side of the chest cavity, we're also starting to see more of the lung. The CRV was at 1.02 today!  We haven't gotten any new photos lately so I was hoping for one today, but baby didn't want to cooperate.  She was hiding behind her hands AND feet today.  Maybe next week...

Dr. Nyholm also took us up to labor and delivery for a quick tour.  Apparently, over the past few days there were lots of babies born and all of their normal rooms were unavailable so we saw a room that they only use for overflow.  She talked us through what will happen after baby Zins is born.  She feels that we will be able to let nature take its course and deliver naturally when the baby is ready to come.  Unless something goes wrong with the delivery, she expects that I will be able to hold her and have skin-to-skin time after she's born.  I was relieved to hear this because I've been imaging her being swept out of the room right away.  Then, the NICU staff will do their thing and we'll have a bit more time with her before she's taken to the NICU.  Even though it means a lot of people in the delivery room, we were once again reassured that she will have every person and piece of equipment that she may need in the room as she enters the world.

Our last appointment was with the pediatric surgeon.  One of the first questions he asked us was if we knew if the baby was a boy or a girl.  When we told him it was a girl, he commented that girls always do better in these situations. : )

We went into the appointment thinking she'd probably need surgery within the first few days of her life.  While that might still end up being the case, we're feeling more optimistic that won't happen. When we first learned our diagnosis, the best case scenario was that the removal of the mass would happen using a minimally invasive surgery during the toddler years.  He was optimistic that could still be the case. After babies with a CCAM are born, their masses usually continue to shrink.  As long as she is able to breath (even if she's using one lung), her heart is not affected, and she doesn't have problems with respiratory infections, they will leave the mass in. The surgeon said we'll become good friends and she'll be monitored closely by him.  

Once again, we were so impressed with the doctors at the U of M.  When arranging our visit, they were sure that doctors we had seen at the Maple Grove clinic were on duty so we'd see familiar faces.  Then, Dr. Nyholm took time to give us the tour.  We were also super impressed with the surgeon.  We're in such good hands.

Our journey has been a roller coaster ride.  The first trimester started out great and we were excited to share our news.  The second trimester was filled with so much fear and worry.  The third trimester has started out with good news and we're feeling optimistic.  We're praying it continues.

We can't thank you enough for all of your prayers.  God is so good!

Much love,

Scott & Sarah

Catching Up...

I didn't get around to blogging after Friday's appointment so I'll start there with a quick update.  The mass measured about the same size, but the ratio was 1.3.  Remember, the ratio involves the head circumference and the size of the mass.  She's growing more rapidly so that helps the ratio go down.

At today's appointment we received similar news.  We hadn't seen Dr. Nyholm for a few weeks.  She said she could really tell a difference in size since the last time she had seen it.  She continued to see regression in the area that surrounded the heart.  That was all good news.  The ratio today was 1.12, the lowest we've had since we started this journey.  More good news!  Because the ratio has measured below 1.6 consistently for the last few appointments, the danger of hydrops is much lower and we're able to go down to once a week appointments.  Super good news!

At both ultrasounds, Baby Zins took a few practice breathes.  We could see her diaphragm going up and down.  A perk to having so many ultrasounds is seeing these developments.

Our next appointments are a week from today.  We're going to the University of Minnesota to have an ultrasound, an OB appointment, and meet with a pediatric surgeon.  Hopefully, we'll get a better idea about possible scenarios for removing the mass.

Wishing you a blessed Easter,

Scott & Sarah

It's all about the heart...

Okay, not entirely, the lungs are also a concern.  However, she doesn't need her lungs yet so the main concern has been about the heart and possible failure due to the mass pushing against it.  The mass had gotten so large that it had pushed the heart all the way over to the right side of the chest cavity where it was being squished. (If you're not familiar with anatomy, the heart should be on the left side of the chest cavity, closer to the midline of the body.) Even our untrained eyes could tell during the ultrasound today that we could see more of the heart.  The doctor confirmed this and even said that the heart wasn't being squished against the right side of the chest cavity and had moved slightly towards the midline. (Huge relief!)  Hopefully, this continues.  Then, the lung on that side can have some room to grow, too.  The CRV ratio was at 1.6 today.  This was higher than Friday. Again, the mass is hard to measure because they're finding a volume and the shape of the mass is irregular. Depending on baby's position and measurements taken there is that margin of error.

They also did growth measurements today and Baby Zins weighed in at 2 pounds 7 ounces.  The doctor was very pleased with her growth and said that everything else was developing appropriately for her gestational age.

Overall, we had a good day at the doctor!  : )  I thought the picture above was appropriate.  Her heart must be super strong to handle all of the stress the mass has been putting on it.  We'll keep praying that it gets some relief and is able to move back to it's correct place because the CCAM is shrinking.

Thanks for praying with us,

Scott & Sarah

A Quick Update

It has only been 2 days since our last appointment so we weren't expecting to see much change today.  Things were similar to Wednesday.  The ratio measured at 1.4 today so it was nice to see it in the same range. 

We also set up an appointment to tour the NICU and meet with a pediatric surgeon in early April.  We'll be about 30 weeks along when we meet so it certainly won't be a definite plan, but will at least give us a better idea of what to expect on the day of her arrival.  

Enjoy the weekend!  We're (okay...Scott) is hoping to paint the baby's room.

We're back to Tuesday and Friday appointments next week.

Until then,

Scott & Sarah

Remaining Strong at 27 Weeks

I had to include a few pictures from our trip to San Francisco.  We had a great time exploring the sites and eating at local restaurants.  Scott's high school friend, Ajay, was our tour guide one day.  We saw many great views of the city and bay that we never would have found on our own.  It was great to get away for a while and to have some FUN.

Scott enjoying seafood cioppino at Taddich's Grill, one of the oldest restaurants in San Francisco.

A vista point overlooking the Golden Gate Bridge.  What a view!

This morning we were back at the doctor.  Today, marks 27 weeks and we're still remaining strong.  Dr. Nyholm (also known as the optimistic one!) thought things were looking good today.  The mass wraps around the heart and today it looked like that area had regressed some.  The ratio measured at 1.46 (compared to 1.9 on Friday).  The difficult part about the ratio is that different people are performing the ultrasounds and may not always use the exact same points to measure so there is an error margin.  Hopefully, we'll continue to see numbers around this (or lower!)

This picture is a cute shot of her arm and hand.  She's always awake when we have 8 am ultrasounds and moves around a lot.  She makes the technicians work to get good pictures of her.  This morning, she had the hiccups so now I know what that feels like, too.

As always, thanks for reading, thinking and praying for our little girl.  God has certainly made her a tough little one and she's blessed to have so many people in her corner.

Much love,

Scott & Sarah

Thankful for Another Week...

Today left us with more of the same, which isn't necessarily a bad thing. Every appointment that goes by with no hydrops is a good one. The doctors think the mass has plateaued. We are hoping that it will shrink and allow some room for her lungs to grow, but it will take some time. As we go forward, we will make plans with the prenatal doctors and surgeons at the U of M on what needs to be done for Baby Z when she is born. There are so many variables though we holding off until we know more. For now, every week she stays where she is a blessing as she gets bigger and stronger.

If everything goes well on Friday's appointment we are heading to San Francisco for a little relaxation. Hopefully this will be the last post until next Wednesday's appointment.

Thanks to all for reading and sending prayers and good karma our way, it means the world to us!

-S & S

- 0.16

Our little girl has to be one of the most photographed babies in utero.  Her little hands are always up by her face.  She's starting to get more fat on her so she looks more like a baby each time and less like an alien.  : )

We had more good news on Friday.  The CRV ratio was at 1.97 on Tuesday and measured 1.81 on Friday.  A difference of 0.16 in three days!  We're hoping to continue seeing the decline next week.  It would be great if it would decrease enough to hit below the 1.6 mark.  Once we get below that mark the chances of hydrops forming is minimal. (I think it would also mean going back to once a week ultrasounds!)

We're thankful for your prayers.  Eighty percent of CCAM cases that have a CRV ratio above 1.6 have hydrops form.  So far we're feeling very thankful to be in the 20% that do not have hydrops form and hopefully, very soon, we can officially be part of that 20%.

Until Tuesday....

Scott & Sarah

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.