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