Gratitude

We have been keeping a gratitude journal here at home and it has been so fun to see what the kids write about.  They take turns each day and have such different ideas of what to be thankful for. I love it!

Each day I continue to think about how grateful I am that our little one is staying put and growing big and strong so that we can bring the little one home right away.  I have been nesting like crazy and now that my sister and niece have moved out, I am getting the basement all ready for the fun coming our way!

We are also in the process of telling more people in our lives what is going on with baby Jacob and what we have in store.  It is such a nice feeling to hear the kind words from those around us.  I feel like we have so much support and cannot wait for baby to feel the love of those around us! 

When we first received the diagnosis (almost 3 months ago!), I wanted to shout about it from the rooftops - I was not afraid of it and I could not wait for everyone to be as excited as we were about our little one.

Then, I heard a few interesting reactions.  Then I read online.  Then I read more online. Then I started to freak out and really started to think about how others might react.  Maybe we weren't having the reaction that we "should."  Maybe we weren't being realistic.  Maybe we should keep this to ourselves.

Now, rather than shouting it from the rooftops, I am letting it out as if I have a large balloon that I release a bit at a time.

After much more reflecting, we have such a tremendous sense of peace.  There have been so many signs along the way and it continues to amaze me when I feel called to share the news with someone new to our story.  Each time there is a connection or unconditional support that comes from the conversation.  And even if it isn't clear to me now, I believe many of these conversations are seeds being planted for the future.  

I am so happy to share that after telling someone this week, they mentioned that they never would have guessed that anything out of the ordinary was going on.  That encouraged me so much.  I do not want anything to take away from this incredible gift of life and I hope that all of this love and support permeates every part of being and the little one's. Not to pat myself on the back, but I am more impressed with myself lately.  I am already learning so much from this baby as I am taking things much more in stride and focusing on the big picture much more.  Life really is short and what you make of it.  Cliches as they are, sometime they are more true than we know.

This week I am excited to share with more family what is going on.  I am sure there will be varying degrees of belief and understanding, but I know that there will also be love and acceptance.  We are sad to not be traveling to spend time with family and friends this week (I can barely get to the mall comfortably in the car!), but I also see this as a fantastic opportunity to be together as a family. 

Who knows when everything will turn to chaos again here?!?! 

Weekly appts!

Well, I am now on weekly appointments, but for baby, not me this time around!

Each week they will do a non-stress test (NST) where they hook me up with the belts and monitor baby's heart for a bit of time.  I didn't know it was starting today and Colton was such a trooper while we chilled out for 20 minutes.  He is not a tv/video kid, but thankfully sat with me and watched Cars this time.  What a sweetie!

I am feeling great with the exceptions of heartburn and exhaustion.  Although, I think the latter just comes with the territory of being a parent.  We have had some head cold stuff going around here, so I will be grateful when I can breathe all night peacefully, too. 

Other than that, I not much to report on.  Which is such a blessing in itself.  I can hardly believe this is what a "normal" pregnancy is like!  Good thing it took 4 times, otherwise we might have a million kids by now :)

The only other thought I will leave those of you following this with today is a word: PERSPECTIVE.

I woke up the other night with a TERRIBLE dream/nightmare.  It was so real and vivid, it took me a bit of time to realize it wasn't reality.  B even said I was crying in my sleep.  I dreamed that we had the baby and the baby didn't make it. It was quite early and weighed 3 lbs and they did all they could.  I still can picture in my mind the moment in the dream where we just held baby and sobbed.  It was so unfair.

On the birth boards I sometimes look at, there are parents who are debating terminating pregnancies due to medical concerns.  I am still shocked at how many share they are terminating based on the diagnosis alone of DS.  No other medical concerns.  Just an extra chromosome.  I just don't get it or agree with it.  I know some who read this will not understand my perspective, and that is just fine, but my blog, my opinion, right?

This all leads me back to PERSPECTIVE.  Last year Kate lost a classmate to secondary leukemia he developed after his battle with Neuroblastoma.  Eli was a first grader and they discovered a large tumor when he 3 and a half.  I have not personally talked with his parents much, but one thing I know from following their story is that they would not have traded the time they had with Eli for anything.  I feel confident saying they would not have decided not to have him even knowing what lay ahead for their son and their family.  They believed that Eli had a great purpose here on Earth.  His journey was much shorter than I am sure they hoped for, but he accomplished incredible things here. 

The message that comes to me is this: a life has a purpose and it is not ours to decide.  Most decisions about parenthood and children do not come easy.  I believe that is on purpose too.  Our children are too important.  They deserve our thoughtful decisions and time and efforts.  They are where most of my learning honestly occurs in life and I cannot wait to see what life's lessons I am in for with this new little one's arrival.  It also scares the crap out of me because I know my many faults will surface in this time, too. (as if they don't already!)   Praying I can see it, or that some loving soul will, and I will grow too!

Fetal Echo

Wow!  What a fantastic appointment today.  The sonographer was awesome.  The doc's nurse was awesome.  The doc was awesome.  I felt such a sense of relief and comfort knowing that baby and I are in the right place right now.  Incredible.

So the fetal echo (a more detailed heart ultrasound) took about an hour.  She checked over baby's growth and my other concern areas, too, which were all ok.  No more kidney dilation!  Still no nasal bone.  Baby was VERY wiggly the whole time and I felt like a bit of a contortionist as I moved into various positions so the tech could get a better look.  I can surely see why they like to do these tests earlier on--baby is just getting too big and squirmy in there!

What we found out:

• Baby is growing on track so far.  Up to 4 lbs 3 oz, which is in the 55th percentile.  This is great news and was reassuring because when Kate was born at 32 weeks, she weighed 4 lbs 8 oz.
• The structures of the heart all appear to be present. (4 chambers, inputs and outputs and valves)
• No holes were detected!
• There is a bit of fluid around the heart.
• The right heart wall is still thickened, but does not appear to have changed since the last scan.
• Baby has some hair already!!  I will upload the pic in a little bit, but the old wives tale about heartburn and hair is SO TRUE for me :)
• My cervix is incredibly boring this time around.  (much to the mother and mother-in-law's dismay.  I think they miss the cervical updates!)

Baby's hair!!

What next....

• Doc recommended non-stress tests (NSTs) on the baby every 2 weeks starting next week.  This will keep track of heartrate and rhythm and screen for any other issues that might arise.
• Doc recommended a follow-up growth scan in 4 weeks to check baby over again and ensure that all is still on track.  If there is significant growth change, this could indicate a need to deliver early.
• IF concerns for baby come up that are heart-related, I may need to deliver at our original hospital because the new hospital does not have pediatric cardiologists on staff.
• Once baby is here, they will perform many more diagnostic tests to see what is really going on and causing the thickening.

It feels so good to have a second opinion and a plan going forward.  The amount of time the doc spent going over everything and my history and the future was wonderful.  She expressed concerns about delivering late (ha ha ha, seriously!) and I told her the OB and I already discussed inducing at week 39 if baby had not arrived.  {I will be SUPER SHOCKED if that happens, btw!}.

Next week I meet with the OB to go over everything and I am so excited.  This pregnancy has been such a different experience and I am so grateful to have found this OB practice and set of specialists to support us in all of it.  It has truly made a scary and worrisome experience so much easier to handle.

It was very difficult to change medical systems and doctors for me, but it sure is proving to be the right choice!  I have a true sense of peace about all that will happen with this little one.  We have done all we can to ensure a great start for baby and are as prepared as we could be.  I really am enjoying this pregnancy and so looking forward to meeting baby!!

I am just over 31 weeks, so about 8 weeks to go!

"update"

So where are we...

I am reminding myself to be calm this morning although I am frustrated.  

After meeting with the OB yesterday, she did some digging into the previous level 2 scans at the peri's office.  It was determined that a fetal echocardiogram was not done at either appointment. This was such a disappointment to hear for a few reasons...

1. I trusted the doctors to do the testing that needed to be done and the heart and GI problems were my greatest concerns.  Also, in our research, it seems fairly standard for babies with DS.
2. We had already had a bit of questioning about baby's heart (fluid, presence of tissue or not and now the thickened heart wall).
3. Babies born with DS have a 50% risk of heart related complications. 

I know that although these tests won't be able to fix anything; I do believe that they will allow for us to best prepare for baby's birthday.

So I am appreciative that our new OB believes that we should follow-up with this.  Next week I will visit the peri in their health system and she will do an echo to check things over well. 

I am more frustrated because they said it is a bit late to be getting an echo done, so that makes me a little anxious.  I am assuming, though, that because there were no MAJOR issues seen so far, that is why the other docs did not do the further testing.  Hoping that the little bug's heart is a-ok and we get a positive report on Tuesday.

The calm...

So I had a few people ask what is up lately and why the no blogging for a bit.  The answer is simple:

Calm.

I am really feeling a sense of calm about things.  Life is going along and we will rise up to meet anything that joins us.  I have been crocheting baby hats and still pondering over names (that is our/my biggest issue currently) and not really reading up on anything.

I have been in contact with a few moms in the area who also have been through all this and they remind me to just "be."

I am so grateful that we found out about all of this so that I could work through emotions and be truly at this point to just meet that little one and LOVE.  I am as informed as I can be at this point and feel like I have an arsenal of resources ready for when they are needed.

For now I can just BE.

I can be at peace and really enjoy the remainder of this pregnancy.

I can be more present with my kids and enjoy them!

I can be confident in what I know (and what I don't know) in life.

I can be not worried about everything that may - or may not- come our way.

It has been such a nice next step in this journey.  I am sleeping better (thank you to my hubby for a new bed--that has helped a ton!). I am not reading about all the doom and gloom pieces of this diagnosis.

Now, not to say that we are all rainbows and ponies all the time, but a current life stress we have also been dealing with for many months is also coming to an end.  We are also ready for that chapter to be completed so that peace can return to our home for us all.  It has been a year of ups and downs within my extended family and I just continue to have hope that my family can find happiness and contentment in their own lives as well.

30 weeks... Less than 10 weeks for sure. My guess is that this little one will join us sometime late in December, rather than my due date.  My initial feeling was December 28th, so we will see...

Hope you are enjoying this Halloween time of year--can't wait to see my little Superheroes all ready to trick or treat tomorrow night :)

Anti-climatic appointment

So.... I was really hoping for more out of our appointment yesterday with the perinatalogist. I am 29 weeks--woo-hoo-- and we were thinking we would get some good info.

The tech did her thing and then she went to get the doc. She measured several things and looked at the heart a bit. Before she got the doc, I mentioned the "goals" of the appt were to check out the bowel for blockages and recheck the heart. She nodded and went to get the doc.

He came in and took a look at the heart again and mentioned that the right side was a but thicker, but everything was functioning properly. I asked about next steps and he said that we didn't need to do anything about it and they would do an echo on the baby after it is born. Then he mentioned about switching providers and asked where we would be delivering.  After that, I got the feeling that they were kind of just brushing us off because of the health system provider switch. 

ugh.

Not really what I envisioned from the appt today. They didn't even mention anything about the other markers from before. Here is sweet baby's face :)

 

I should be grateful that there were no "real" issues that came up, but I am frustrated.  I have my appointment with the OB next week, so I plan to ask about all this then and see if they feel I should see the Iowa Health peri instead.  I also have Colton's 15 month check up with the ped next week, so I will ask her opinion too.

I really despise the medical part of life sometimes.  You really must be your own advocate and be on top of everything.  This makes me a bit nervous for what may come ahead.  But until we know more, we will continue on!

Serving joyously

Serving joyously

My favorite line from "a good and perfect gift" so far.

One of the most interesting parts of this journey so far for me is re-evaluating my life's goals and my goals for our family and children.

Before this, I would have said my goal for my kids was like that of my goal for my students all those years that I taught - to create happy, well-adjusted goal-mnded independent citizens who contribute to society in a worthwhile way.

I wanted to create little people who would be independent thinkers that went out to do good.  
They would not become a drain on society.
They would not conform to others' thinking.
They would be individuals.
They would have a sense of focus and goals.

I think my time at home and "out of the work-force" has caused my thinking to change a bit.  I really want for them to have the life that makes them happy.  I hope that all we instill in them will encompass the other list, but truly without happiness, it will all be lost.

I LOVED my job. It was my calling.  To teach and guide and watch learning happen.  I thrived on it. Especially in my last position where I worked with adults working with kids.  Having conversations that mattered about the teaching and learning process with students and teachers was AMAZING.  Then fold in the professional development and data - well, I am just too big of geek to go into that here, but I felt it was my calling and the way for me to be a servant leader.

Then we found out Colton was on the way.  I must say, that this was the God wink that I had needed.  I loved my job, but I LOVED my family.  I was getting caught up in the craziness of working mom life and I needed peace in my heart and soul and mind.  I really believe that Colton was God's way of saying "It's ok to walk away from this role.  I have a more important calling in mind for you right now."  And boy did He.

I have found other ways to keep my toes in the waters of education.  Helping with curriculum at church (I am such a geek, but I love it!), teaching small groups at church, teaching online courses. I can remain as involved as I would like and this has been a nice balance for my teaching/learning soul.  I am able to do these things and with joy.

Does this mean I am still working towards my goals?  Yes and no.  My own personal goals have shifted.  I completed my second masters in Administration 4 months after Colton was born.  I had planned a career in working with curriculum and development.  Plans change.

My new goal is perfectly summarized in those words "Serve joyously."

I want that for my kids.  I want them to choose a life path where they can use their gifts and talents to impact society in a positive way.   I want them to find ways to serve joyously.

That allows me to accept part of this diagnosis that bothered me.  "What will my child's future look like with a the road blocks that Down syndrome might cause?"  My new outlook:  As long as he/she is serving joyously, does it matter whether or not he/she completes schooling after high school?  Does it matter if she/he lives at home much longer that expected?

My answers are no. If this kiddo (or any of them, for that matter) find a way to contribute to society in a productive way that allows them to use their gifts/talents and serve joyously that will mean a lot.

I feel this might become my mantra for a while.  Who knows, maybe it will help while cleaning bathrooms (which I despise), or cooking on a night when I am worn out, or taking the time to snuggle when I am DONE for the day.  I will serve my family joyously.  They deserve it.  I deserve it.  He deserves it.

Life could be infinitely worse than I could ever paint it to be.  It is too short to not live with JOY.