Rest for the Weary and Hurray for Summer

The last 6 weeks have been pretty exhausting.  Not the sleep deprived kind of exhausting, but the kind where you're experiencing too many stressful things, and eventually your body starts to feel the exhaustion spilling over from your mind.  I put most of this on Facebook, but just as a recap, here were the things that happened this last month:

• Joshua's kindergarten transition meeting 
• Several check up appts, including pulmonology and craniofacial team.
• A weight check (following a weight check 3 months ago where he had lost weight and re-inserting the feeding tube was discussed if we couldn't get him to gain some weight)
• Inguinal hernia surgery
• 20 week ultrasound / anatomy check for new baby

The great news is that every single thing went as well as it possibly could have.  The school district agreed to give us all the supportive services that we feel Joshua needs.  We made it through 6 check up appointments without needing a single new test, surgery, med, or therapy (especially when seeing the craniofacial team, this is rare, but hopefully will be the new norm!).  At his weight check, he gained 3 pounds in 3 months and got back on track with his growth chart, despite still eating a very limited range of food - the doctor was very pleased and a little dumbfounded to see this kind of gain (me too, honestly, but I think he had just taken a dip and now his growth will level back to normal).  Surgery is always a hard day, but an outpatient surgery with no complications or infections and a quick and fairly painless recovery is as good as it gets.  And the anatomy scan showed all good news with new baby, including when they took a close look at the heart, jaw, and palate.  Lots and lots to be grateful for this month.

Thank you all for your support through these things.  I'm sure you get as tired of "liking" my incessant Facebook posts as I do of writing them over and over, but the encouragement that people offer (through Facebook, emails, and texts) really goes a long way towards getting me through hard days and weeks.

This month has provided several good chances to apply the memory verse I'm learning with my small group -- "This is my command - be strong and courageous.  Do not be afraid or discouraged, for the Lord your God is with you wherever you go."  (Joshua 1:9)  But now I am in need of a different kind of verse - “Come to me, all you who are weary and burdened, and I will give you rest. Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls.  For my yoke is easy and my burden is light.”  (Matthew 11:28-30)

Luckily, it's looking good that the next stretch of weeks will be restful.  We don't have any appointments (other than OT) on the calendar for the next few months.  The warm months are the preferred season of our whole family, and I'm looking forward to having more time to go to parks, wade in the Truckee River, spend beach mornings at Lake Tahoe, and take our hyper puppy for walks.  The kids and I will visit Nebraska for the first couple weeks of July and spend time with my family, which is always a fun and restorative time.  Reno has lots of fun festivals in the summer, so hopefully we'll be able to hit a few of those events.

The other really exciting thing is that Kenny's book is released on July 20th.  I will blog more about this sometime soon, but if you would like to pre-order a copy, here's the link.

Happy first day of summer!

Two Kids or Three?

This post is about our decision to have a third child.  I wrote this because I know that many of you are around the same age as me (shout out to my fellow '81 babies!) and might be thinking about adding a child.  Also because people are really excited to urge you to have your first and second child, and much more ambivalent about a family size of 3 or more children - and whether it's good or bad, we generally think harder before making decisions that go (somewhat) against our cultural norm.

I hesitated to write this blog because I know this kind of topic can be loaded for many:  people who have struggled to have kids, people who have lost kids, people who aren't in the life circumstances to have more kids; and for people who have faced this same decision and decided differently, for whatever reason.  If this post is hurtful to you, I'm sorry.

So, with those caveats in place, here are the things we thought about in expanding our family by one more child:

First, what made us pause in thinking about adding a third:

• Special needs - thinking about whether we can handle Joshua's needs while also handling the needs of two siblings; and what if we have another kid with the same needs or other special needs (can I do a good job taking care of both?).  
• We love our family the way it is now--  
• We already have 2 kids - our kids each have a sibling, it doesn't feel like anything is "missing" from our family.
• Zoey and Josh are best friends and you never know how adding another family member will shake up the entire dynamic of the family.  
• Life is just starting to get easier.  Do we really want to go through the baby phase again?
• Many say that the transition from 2 kids to 3 kids is when things really get crazy.  
• Fewer kids = better ability to financially provide for each individual child, both now and in the future. 
• Getting back to my career -- I've enjoyed being a stay at home mom for this stretch of time, but I also love being a lawyer and would eventually like to get back to that.  

What made us ultimately decide to go for it:

• Our 2 kids bring us great joy - so it seems like one more kid would bring even more joy.  (This was our single biggest consideration.)
• As they get older, they get more fun.  I'm not really a baby person (though I do find my own and other people's babies extremely cute), but as they get into the toddler and the kid phase, it's more and more fun to interact with them and watch their personalities emerge (and also, it's really fun to get back to sleeping through the night).
• I'm under no illusion that things don't get exponentially busier with each added child, but there are many ways in which we're already set up for family life - we already have the family car and family house, already eat most meals at home, already keep a schedule and choose activities and vacations that work for the kids, already have a house overtaken by toys - so in those ways, another child will be joining the lifestyle that we already have.   
• I grew up in a family with four kids and absolutely dug it - for the kids, I think it's usually the case that the more siblings you have, the merrier.  And while there must have been some very challenging stages for my parents, they are also happy (i think? haha) with their decision to have a big family.  
• You're making the decision for the rest of your life - 20 years down the line, when it's way past time to decide to (biologically) add to the family, how many people do we want coming home for Christmas?  How much of a support network do we want the siblings to have with each other?  How many people do we want to be part of our family for the rest of our life?  I've never met an older adult who wishes they had less kids, but you do sometimes meet older adults who would appreciate having more kids.

First picture of Baby #3!

The considerations in the "pause" list are real (and for years, made us think that we were likely done having kids), but there is an answer to each of them, and the answers look like:  we'll figure out our new normal and if necessary get the help we need; we can re-arrange the budget as needed; and there are trade-offs with every life decision you make so you need to decide what your top priorities are.  The considerations in the "go for it" list seemed like the things that in the long-term are what will matter to us the most.  And in the end, it comes down to a feeling more than a pros and cons list.

I'm looking forward to meeting Baby #3, and in the meantime, I'm enjoying my sleep!

High Risk Prenatal Care

This post talks about our odds of having another baby with a chromosome disorder and the process of high risk prenatal care.

So what are the odds that we will have another baby with 4Q deletion syndrome?  Our risk of having another baby with Joshua's same deletion is unknown (kind of) - Kenny and I have not been genetically tested, so we don't know if Joshua's disorder was inherited.  If one of us carries the same deletion, then our likelihood of passing it on with every child is 50%.  If the disorder was new with Joshua, then the chances of new baby having the deletion are the same as anyone else - so 1 in 100,000 of having a deletion on the 4th chromosome (and to get Joshua's exact deletion, probably more like 1 in 100,000,000+).  But we also have good reason to believe that the deletion was a new genetic variant in Joshua and not inherited - this is true for 86% of people with his deletion, and we have no family history on either side of the type of medical or developmental issues you typically see with a 4Q deletion.  So it's much more likely than not that the deletion was new in Joshua rather than inherited from us, and if that's true, then our other children are not at an elevated risk to have this extremely rare chromosome condition.

Now, the prenatal care -- because I am "advanced maternal age" (but still occasionally get carded when buying alcohol, so don't cry for me Argentina) and have a history of baby with chromosome disorder, my pregnancy is considered high risk.  (Thankfully, my health through pregnancy and L&D has historically been low risk and healthy, and all signs point to this pregnancy going the same way.)  When you have risk factors, you see a doctor called a maternal fetal specialist in addition to your regular OB-Gyn.  In the first trimester, the specialist talks to you about your odds of various disorders (and gives lots and lots of details about what those disorders entail) and then they offer a wide range of testing.  It's amazing where genetic testing is at these days.  If we chose to do an amniocentesis, they could do a full micro-array on a 12 week old fetus.  Even with non-invasive blood testing of the mother, they can gather a lot of information about the fetus's DNA based on the how it's interacting with the mother's DNA.

Putting aside the technology-is-amazing aspect, the testing conversation is a difficult one for me because I understand the doctor's urge for early testing is partly because they want to give you time to "exercise options" if you do have a baby with a chromosome disorder (not that all, or even most, people are thinking that way when they choose to do testing - I know planning ahead can be extremely useful).  (Also, I don't want to start an abortion debate in the comments section - I'm just expressing my feelings about my personal situation.)  When you've already got a living, breathing child with a chromosome disorder, it's hard not to then take the implication a step further and wonder what they would have advised if they saw in my first pregnancy that I was carrying a child with a fairly large deletion and a series of birth defects.  And how this focus on the defects ignores everything else that the child will turn out to be, and the joy that he will bring to his family and the world.  And it makes me feel angry and sad at the devaluing of what I know, from firsthand experience, is a beautiful, wonderful life.  So that's the first trimester.

In the second and third trimesters, they do several ultrasounds with their high tech machines (i believe the ultrasounds are 4D?) and watch for specific problems where the baby has the highest risk.  For 4Q deletion syndrome, they will be watching mainly for heart problems and craniofacial problems.  This is helpful - exactly the kind of information that I want to have from the experts who are in the best position to gather it.  But this is also terrifying - instead of enjoying the moment where you get first glimpses at your new baby, you're holding your breath, hoping they're not about to announce a defect in an organ system that will mean major surgery or incompatibility with life.

Also, what we found in my pregnancy with Zoey is that, if you're looking for a problem, you're much more likely to spot one.  With that pregnancy, the doctors were looking for a recessed jaw, and they went back and forth in 6 different ultrasounds on whether she had a recessed jaw or not (with some dabbling in low birth weight and low amniotic fluid - nothing major, but while we're looking for problems....).  It turned out that she was born perfectly healthy, but we were nervous wrecks for the last half of the pregnancy and the best that the doctor could tell us was "maybe there's a problem, maybe not".  Nevertheless, it was good to know that doctor was watching and ready, should a problem arise.

That's the process for prenatal care if there is a possibility that the baby is high risk, but otherwise the pregnancy is low risk.  I would be interested to hear other's experiences with maternal fetal specialists, especially in the case where the main thing they're watching is the health of the baby.  We are hitting the 20 week mark and the first set of ultrasounds this month, so would appreciate prayers for 1) a healthy baby and 2) peace throughout the process.