Week 24-25 Adventures of Simon

It's been a while since the last blog post.  We had two appointments last week.  The first was with Dr. Drake, the perinatologist, the second with Dr. DeJong (or something like that), one of the OB doctors.  Tuesday was when we met with Dr. Drake.  We met with the genetic counselor first, who gave us our microarray results.  The microarray tells us where the deletion is on ring 13, which we found out is at 31.2 (I'll post pictures later, which will help make that number mean something).  What Simon has lost is 114 genes, which are obviously incredibly important in his development.  We set up to have genetic testing done for Ryan and I, which we'll do sometime in the near future.  We also got a copy of what Simon's chromosomes look like, which showed a clear deformity in the second 13th chromosome.  After the genetic counseling, we had an ultrasound.  My parents brought Tanner down for the ultrasound (so he didn't have to go to the before or after meetings).  They all got to see little Simon and we recorded his heartbeat on recorders from Build-a-Bear so each of the kids and Ryan and I can make a bear with Simon's heartbeat.  Our ultrasound showed Simon at 20w5d for his body and 17w4d on his head, with our gestational age at that time being 24w5d.

Dr. Drake brought up the question of how aggressive we want to be with monitoring, since at this point, we can't do anything and it's likely he won't survive the pregnancy.  I knew the conversation was coming, but I was still blind-sided by it.  I told her it's so hard when you're not on the professional side of things.  I can't count how many times I've told a patient's family that their loved one's prognosis was very poor but I've never been on the patient/family side of things.  From a medical standpoint I would advise to let nature take its course, but as a parent, it's so hard to think that's the "right" answer.  How far do you go to give your child a chance at life, but how reserved do you become so they don't hurt?  We're trying to figure out the answer, but I'm not sure we'll have it.  Needless to say, Ryan and I have been having, and will to continue to have, some pretty difficult conversations.  We're also started talking about burial vs. cremation and if we chose a burial, where we bury him.  The things we are having to think about are things I never thought would be on my mind.

I had my OB appointment on Thursday.  This was the first time Ryan hasn't been with me at an appointment since we found out that things weren't going well with the pregnancy.  I insisted he stay at work and I had a work meeting at the hospital that day so it made sense for me to go on my own.  I met with a new doctor in the group.   It started off fine and he acknowledged that this was a difficult pregnancy.  He said that Simon had trisomy 13 and I corrected him and told him he actually had ring 13, to which he replied "oh, I knew it was something with 13".  I forgave his shortcomings...until he showed more.  We started talking about what happens when things get further along in the pregnancy and if he does somehow survive to be able to be born and have a chance of living.  He stated "The baby has been given a fatal diagnosis so we won't do steroids to help his lungs or do a c-section".  Now, being an insensitive jerk is a really good way to make a pregnant lady want to kick you in the face.  That comment was coming from a fella who 3 minutes before wasn't really sure of the diagnosis.  At any rate, I don't think we'll be seeing him again by choice.  I know Simon hasn't been given a good diagnosis, but there were several more tactful ways to put what he was saying into words.

Before I get to Simon's fun adventures, I have more fun news to share.  In 21 days I will be done with my masters degree.  I must say I'm quite excited.  I don't want to wish away time in this pregnancy, however, so this is the first time I will say I hope the next 21 days go very slowly.

We celebrated Tanner's 10th birthday on Friday.  Absolutely crazy...where does the time go?!  

And...Simon's fun adventures.  He's been quite the busy guy lately (in utero as well).  Last weekend we made it out to the Carstensen farm to harvest, which is something every little Carstensen boy needs to do.  He also went to Dairy Queen (it was really Simon who wanted it...who believes me?), had Casey's pizza, went shopping with mommy, played with paper dolls, went to a water park, saw the Mississippi, saw the world's largest strawberry, had room service/breakfast in bed and had a picnic at the lake.  Simon also went hiking at Backbone State Park...which is where his dad first realized he was in love with his mom.  Obviously, it's a pretty sentimental place to us, so it was important that we could share it with Simon and the other kids, since they hadn't been there either.  It was such an amazing weekend that we spent together as a family, one that I think we all needed.  I can't even begin to tell you the number of times I looked at my kids and thought about how lucky I was that God gave them to us to raise.  I fell in love with my children time after time again this weekend, which all you parents know never gets old.  Look at them...how can you not fall in love with these sweet littles?

 25 weeks

 Combining at the farm

 More harvesting fun

 Room service/breakfast in bed (not all of those plates were for me and Simon)

 Visiting the Mississippi River

 World's largest strawberry

 Hiking at Backbone State Park

Making memories

Last Tuesday, we had our appointment with the perinatologist who was nervous that Simon wouldn't survive the pregnancy.  On Friday, we had a meeting with the perinatal palliative care program which consisted of a nurse practitioner, chaplain and child life specialist.  It was a good meeting, I think, for both Ryan and I.  They brought to light the way we are going to cope with everything and that it may be different for each of us.  We talked about stress relief and how we're going to take care of ourselves in this whole process.  We talked about ways to help Tanner with any of this.  We talked about the possibility of Simon not surviving and what we do if he does survive the pregnancy.  It was a long two hours but I feel like both Ryan and I came out having thought about things that neither of us had considered.

One of the most important things we talked about (I think) was making memories.  Since we don't know if Simon is going to ever be here with us, making memories now is what is important.  Sure, we may have him, but if we make the memories now, we won't have to live with the regret that we didn't make the most of the time we had with him.  So, that's what we're going to do.  We're going to live our lives and we're going to do things with our Simon that we would want him to do.  We're going to read him our favorite books, play our favorite music, dance, play and love him.  So we started on Friday and are going to continue.  There's talk of a possible trip sometime soon in the future but we're not sure if I'll be able to go and where/when we'll do it.  So until then, we'll just keep on doing things with Simon and making memories with him and our family.

Here are some of Simon's first adventures, in pictures of course (I might actually have to start looking decent all the time if Simon and I are going to have spur of the moment memories in pictures!)

Simon celebrates Mommy's birthday at Hickory Park

 Simon with a new Corvette

 Simon with a Lamborghini

 Simon with a Viper

 Simon makes chocolate chip cookies

 Simon does a corn maze

And...Simon visits an apple orchard!

 

 So, there it is...the beginnings of the adventures of Simon!  He must be quite excited about all these memories (and the lovely apple cider we got from the orchard) because he's been flipping around like crazy the last day or two. 

Perinatal appointment

I'm mentally and emotionally exhausted today, so this will be brief and to the point.  We had our perinatal appointment today with Dr. Drake.  I've met Dr. Drake several times over the years as we have had mutual patients in the ICU, but never did I think I would be one of her patients.  She recognized me and had no idea that the person whose file she'd been reading was mine.  I do have to say that being in her care makes me feel good as I would never hesitate to send a family member to her.  

Today they did a detailed echocardiogram (heart ultrasound) and looked at baby's anatomy.  We got some "good" and bad news.  Here's what we learned, in order from the most worrisome to least: 

1. Growth retardation:  They have used our first ultrasound date to reset our due date to February 6th, which put the pregnancy at 22w5d today.  The baby is only measuring in at 19w5d so baby has a pretty significant growth restriction, which we knew.  Baby's head is only measuring at 16w6d which is a result of the brain defect.  Dr. Drake seemed to think this was likely the most worrisome problem as many babies with such severe growth retardation don't survive pregnancy.  She told us she was very afraid we would come in some day and not find a heart beat.  We've known this whole time that losing him before birth could be a possibility but we still have to carry on. 

2.  The brain defect (encephalocele) is fairly large and does contain some brain tissue (which isn't a good thing).  There are abnormalities with baby's brain, too, likely due to the encephalocele.  The mortality rate for encephaloceles is 30-45% but our baby has a likely worse prognosis because there are so many defects. 

3.  The heart, from what she could see, looked like it was just the small hole between the ventricles.  She wasn't too concerned about this because 80-90% close before birth and if they do stay open to birth the defect isn't usually symptomatic.  She did caution us that the heart is still small so she couldn't see everything and the possibility exists that there could be more but as of now, it looked like there was the one defect only.

4.  Cleft lip: It seems baby has a cleft lip, we are unable to tell at this point if there is a cleft palate as well because baby is so small.  This is a pretty minor concern as it can be dealt with and isn't life threatening. 

5.  The right hand seems to possibly have some abnormalities in positioning, but again, baby is so small at this point that the images are hard to see.

6.  Dr. Drake told us that if at any point I'm in danger because of the pregnancy and I start to get sick, then we deliver baby to protect me since baby's prognosis is so poor.  She didn't think that I was at danger but also stated that chromosome disorders are sometimes unpredictable.

All other things were talking about referrals to Iowa City, where we go from here and how to proceed the next few months.  If at any point I don't feel baby for 24 hours we have to go in to make sure baby is okay.  Dr. Drake also wanted to make sure we were okay emotionally, as much as we could be, and it meant a lot that she addressed that with us and not just all of the medical jargon. The plan at this point is to do ultrasounds every 2 weeks right now and at the next appointment on 10/22 we'll talk about a referral to Iowa City. 

And the most fun thing about today.  We found out a couple weeks ago that we're having a baby boy.  He is our little Simon Leo, one we're so in love with already, the little boy so many have been praying for.  Tanner is quite excited that he is finally getting his brother.

The roller coaster continues for us at this house.  Hopefully some more answers this week.  In the meantime, Baby C is growing!  Last Friday marked 23 weeks, here is the 23+2 (and first public belly) picture. 

The Waiting Game

The last few days have been rough.  I was off yesterday and had a playdate with a couple of work friends.  The drive there, the drive home and the evening that I spent alone (Ryan worked until 9:30 last night) were torture.  I am having a hard time with the waiting game, not knowing what is going to happen and I drive myself crazy thinking, researching and planning for outcomes that I don't know will happen.  There are several things we are waiting on and I'm afraid none of those answers are going to come soon or provide us any black and white answers.  The first is the further chromosome test.  They started running it last Wednesday and it's a 10-17 day test.  That test is looking at the 13th chromosome to see where the deletion is which can provide some insight to how bad this is.  We're also waiting on the fetal echocardiogram which will tell us if our baby has any further heart defects other than the ventricular septal defect.  If baby has more heart defects, it's not good.  We also have to find out about the encephalocele, the opening at the back of baby's skull.  The encephaloceles have many different outcomes, all the way from stillbirth to normal functioning. In the best case scenario, our baby has a small encephalocele that contains CSF only but it is likely that it will contain brain tissue. 

My heart wants to believe that God is going to create a miracle with our baby.  I've prayed over and over that He will fix our baby.  My brain knows that He has a plan that is already in place and we may not witness a miracle with our baby.  I'm so afraid to hope for a miracle because I think that will just make it so much harder if our baby isn't okay. My mind wanders and I think of our baby grown telling stories of how he/she is "normal" against all medical odds, living proof of the miracles our God can do.  I know this isn't likely, but I am not sure I can give up that hope.  Not yet.

We have several appointments coming up.  On Tuesday, we meet again with the perinatologist.  They'll do the fetal echo to look closer at the heart and they'll look at baby's anatomy again.  I'm hoping they can tell us more about the encephalocele and how good/bad it looks.  We'll also find out how baby is growing (we were 4 weeks behind on growth so I'm hoping baby hasn't fallen any further behind).  I feel baby quite a bit now and Ryan and his sister have been able to feel the baby too.  I'm hoping baby can keep growing and get strong.  My preceptor told me last week that I was looking bigger that day.  Now most pregnant women don't want to hear that but that made my day :)  If I'm getting bigger, baby must be too, right?!  :)  Grow, baby, grow! 

Next Friday we meet with the perinatal palliative care program with Blank Children's Hospital.  I think this will be a good thing for all of us.  They'll help us with whatever the outcome is and help us with the referrals we may have to do.  They'll help us with the kids too, and talk to Tanner to help him cope with all of this.  Leah doesn't have any idea what's going on obviously, but they'll help her, too.