Our journey through a prenatal Trisomy 21 (Down syndrome) diagnosis and beyond

I wish it were possible to recognize at the beginning of our life’s story what an incredible journey we are truly on. If so, I would have sat down years ago and begun documenting all the ordinary and extraordinary events in this amazing life I have been blessed with. Sometimes, though, it may take just one more thing to open your eyes into the beauty of the life you have led and causes you to pause and truly count the blessings that are now so many they will never be enumerated.

If you are just joining us, please go back to September 2012 to get caught up.

Monday, December 31, 2012

Steps in the right direction!

Another good day in the NICU! There are always ups and downs, though.

** I've only called Owen the name Colton twice. :)
** Owen's feedings have increased again. He is up to (at least) 40 ml every 3 hours!
** They removed his IV!
** O is on a lower flow oxygen that is more mixed with the room air.

"Downs" -although not too far down :)
** He wasn't keeping his temp up, so they are using the baby warmer agains, although he also has on real clothes! (another up!)
** His billi levels rose a bit again today and I think he looks more jaundice. Although it is still in normal range, so no lights!
** Owen is more tired today, and taking the first parts of his feedings well, but then he is just done.

A finger snuggle

Smiles :)

Mr. Owen has been working hard today and has been resting a lot.  We have switched over to bottles because he has been having great luck with it.  And, the sooner we are eating not through the NG tube, the sooner we get to go home!

The docs are pleased with his progress and we are hoping that by the end of the week we will be celebrating 2013 as a family at home.

Sunday, December 30, 2012

Could this day get any better?!?!?

Well, the little guy is a boob man! He latched on right away and nursed for 10 minutes. We weighed him before and after and he had taken 15 of his 20 ml!! AMAZING!!

I also got to be there when the docs rounded and they are pleased with his progress. He is off the billi lights which is also wonderful because we can hold him more!! They are hoping that will also help the progress with his oxygen as well, which appears to be his remaining issue/concern.

Wow! Our prayers have been answered over and over. Prayers for a fourth baby. Prayers for a healthy little one. Prayers that his heart would be ok. Prayers that he would arrive safely.

Thank you to all those praying alongside us; it truly makes a difference.

Wonderful news!

Owen had a great night last night and is slowly weaning off the oxygen. His billi levels were also very good this morning, so his body is doing all the right things to break down those pesky red blood cells! That means less time under the lights and more snuggled.

More importantly, it means I get to try nursing again today!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

[please note the amount of exclamation points is in direct correlation to my level of enthusiasm:)]

This is HUGE because he needs to be eating well before we can blow this pop stand, so to speak.

I can't wait to see how it goes and will update later this morning:).

Here is a pic from our snuggle time this morning. Could be one of the cutest four babies I've ever met---although I am a bit biased;)

What a way to end this crazy year!

Saturday, December 29, 2012

Peace & quiet

I am learning more quickly in life that it is so much more about precious moments in time than anything else.

Tonight I was able to have some of those moments that I will remember forever. The sounds. The smells. The snuggles.

After pumping for his midnight feeding, I was able to sit and hold O for an hour. 60 minutes of him and me. In peace and quiet.

It was amazing.

He is such a sweet baby, with a bit of a feisty side when he needs it (thankfully!). I could watch him sleep all day and it occurred to me tonight that this might be the only time we get together just he and I.

So I soaked it in.

As I snuggled, I was reminded how much I take for granted in life. And not because of anything specific, but just because I get swept up in the day to day craziness of having kids and life.

I was reminded how amazing the miracle of life really is. We created these beautiful children that He planned for us to raise and get to learn so much from them each day.

I was reminded how incredible modern medicine is. And how lucky we are that all of our children have been able to move past their health issues we've faced so far.

I was reminded of my favorite verse...faith is being sure of what you hope for and certain of what you cannot see.

I realized all that I truly hope for is my family's happiness and for my kids to feel the enormous love we have for them.

I remembered back to these moments I was able to have with the other kiddos as well. With Kate, it was our first day home from the hospital alone. She was a month old after her NICU stay and I was still growing into my role as a mom, on my own with my baby (finally). With Andy, it was in the hospital after everyone had visited for the day. I hadn't ever had a baby in the hospital that could room in with me and i didn't sleep much at all that night. I just wanted to hear him breathe and watch him sleep all night. With Colton, it was also our first quiet time together, but with him it was nursing. He was the first that caught on to it and that i didn't have to pump for. The experience was more than I expected it to be and the closeness is never forgotten.

Peace and quiet.

What a gift for the soul and heart and mind.

Photo Bomb!


We just finished visiting Owen in the NICU and got to hold him!! It was a wonderful hour and we cannot wait for more snuggle time soon.

We also got to meet with the neonatologist about Owen's status. So here is where we stand...

**His hemoglobin numbers are now within normal range, so the blood/saline exchange worked to solve that issue.

**He is on billi lights to stay ahead of the jaundice that may settle in as his body works to break down the other extra red blood cells (typical of a newborn and especially with all the thickened blood from the extra hemoglobin.). This really stinks because we cannot hold him as much as he is under the lights.

**The remaining issue is his oxygen level. They tried weaning him off the extra oxygen, but he didn't tolerate it well, so he now has a nasal cannula. The doc said this can be normal for some babies as their bodies transition from circulating blood differently before and after birth. They are confident this will resolve in time with the additional oxygen support, it will just take time. I believe he classified it as pulmonary hypertension--lungs working harder then necessary.

So, in line with our current history, we wait.

I am getting better at this than I would like.

We hope he will be on the way home by the end of the week, but we just don't know.

We did get to watch him get his first "bath" and I have never been so happy to change a dirty diaper:)

All in all we are so incredibly lucky that none of the potential DS issues have arisen, especially heart or bowel concerns. He is adorable and relatively healthy and we cannot wait to bring him home!

Thank you for all your thoughts and prayers!

Friday, December 28, 2012

He is here!!

Our newest little guy has finally arrived,
We knew he'd be extra special for quite some time.
A blessing from God like all the others,
Poor Miss Kate-3 little brothers!
Join in out excitement and incredible joy,
As we introduce Owen our precious baby boy!

Owen Henry Jacob
1:04 pm
7 lbs 7 oz
19 inches

He is here!! After an appt with the peri Thursday, they noted an increase in fluid around his heart and recommended we induce to get him here so we could have him evaluated. We didn't tell many people and went in at 8 am on Friday. They broke my water at 10:20 am and he joined the world at 1:04 pm! What a couple of hours!

He is our biggest baby by a pound and has chubby cheeks and reddish hair--what a doll! We were able to spend time with him after birth and that was wonderful! He nursed right away and has great muscle tone.

They ran several tests in the nursery and he started to have some issues, so his newborn nursery stay was short-lived, though.  He was admitted to the NICU in the early evening.

Tonight the cardiologist checked him out and found NO heart issues--amen! Nearly half of all babies with DS have some problems here so we are feeling incredibly blessed.

He was having some issues with his oxygen levels in his arms/legs, however, so he was sent to the nicu. This was disappointing and nerve wracking, but he is looking great! He is on a low oxygen level mixed with room air. They believe he has extra hemoglobin in his blood which was thickening it so it was harder for him to get it moving around his body, especially his extremities. So...they did a procedure to exchange out some blood for saline to dilute his blood, essentially. I will be heading up to check on him in a few hours to see how that did.

It was a long day and I will write more about his birth story and upload pics tomorrow, but we are so grateful that he is doing well and praising the Lord that he is safely here with us!

Tuesday, December 25, 2012

Current situation :)

So I am now 38 weeks and we have made it through Christmas.  I am so thankful that I could be here with the kids to see Santa visit.  Now I am really ready for the little guy to arrive.

I went to the doctor yesterday and I am still at a 3.  For 3 weeks.  Oy vey.

I go to see the peri on Thursday, where we will see if there is anything new going on with baby.  I believe they will be doing another growth scan, so I am excited to see the guesstimate of his weight. Keep in mind our largest baby was 6 lbs 6 oz.  This could get interesting.

We did decide this week after talking with the OB that unless something changes with baby, we are not going to induce.  I am such a planner and ready to be done and love the Dec birthstone, but was nervous about not letting nature take its course.  The doc was ok with whatever we wanted, so we will see!

Will he be a 2012 or 2013 baby--only He knows :)

We are so thankful during this holiday season for our family and friends and cannot wait for 2013!

Monday, December 17, 2012

Appt with Peri - only a few more to go!

Today we had our appointment with the perinatologist again for a biophysical profile of baby J.  He scored an 8/8 again in the four areas (movement, movement of a limb, breathing practice and fluid level) so that was wonderful.  But, the fluid was still present around his heart (pericardial effusion) and the heart wall is still thickened.  Although neither seemed worse today.

So what does this all mean?  We don't know. And we won't know until he is out and about and they can perform an echocardiogram on him.  Patience.  Boo!

From the research I've done, it seems as though the thickened heart wall and fluid are each things that could be symptomatic of something else going on.   Or it could be just the way that his little body is.  Time will tell, though.

The question I asked the peri today was what is in store after he is born.  Especially in terms of the NICU.  I did not like the answer. 

We got the feeling that a NICU stay, of some length, is very probable.  Yuck.  We did the NICU for 30 days with Kate.  30 days. Not holding her much.  Not nursing.  Not being a mommy to her. 

AND we didn't have other kids at home.  I was able to spend every waking hour next to her. 

Although the NICUs have changed dramatically in 7 years, I know it will still be very hard.  Our first experience included Kate being in one of three rooms with isolettes lining the walls.  Our "private" time with her included a folding curtain that just fit around the rocking chair they would bring in. 

Now I understand babies have their own rooms where parents can actually spend the night.  I was hoping to never really see this for myself.

I am now realizing that I should really be preparing for this likely reality.  Double yuck.

We are so fortunate to have family and friends that have offered much support and love during this time and I am grateful that there are people I can count on if this comes to be. 

It is interesting how the DS diagnosis truly takes a back seat to everything else.  Yes he may look "different."  Yes he may meet milestones at "different" intervals.   Yes he may have a variety of challenges.  But he is our son and I just want him to be here safely.

The message at church this weekend was about peace.  The core:  peace is not the absence of struggle; it is the presence of love.  Whoa.  I thought I was at peace with all this because I was not freaking out daily anymore or googling or worried at every appointment.   Now I realize I was at peace with all this much sooner.  I loved this little guy with all my heart from the first moment we realized he would be in our lives.


This is the season of peace and love and I just can't think of a better way to celebrate the birth of Jesus with our kids.  Welcoming our own little one that will also teach us so much about love and life. 

My prayer is that our kids will manage this all well and that we can continue to have family time in the midst of the chaos.

My prayer is really that the little guy arrives and there is no reason for him to visit the NICU.  That we can bring him home and continue on the journey that awaits.

Saturday, December 15, 2012

Still at a 3...

Still at a 3 at my appointment Friday.  This weekend I am officially FULL-TERM--37 weeks!


Baby looked great on the NST again and I had several contractions while I was hooked up.  After getting home, I felt quite achy (like couldn't get off the couch) for about an hour.  I was "sure" we were headed to L and D, but... magically it stopped.

The thing I did realize is that if something happens during the day while B is at work, I might need a ride.  I really thought my water would break, I would happily drop Colton at a friend's house and then drive myself to the hospital to meet B.  Now, I might be taking one of my buddy's up on the FB offers they are making...Be warned, friends :)

We had a family day out today and got the *last* baby item I needed, so I am really feeling like baby boy can come anytime.  Can hardly wait to snuggle him!!!!!!

Monday, December 10, 2012

BPP 8/8

Had a great appt with the peri's office today!  Baby got an 8/8 on the biophysical profile (BPP), so he is still looking great!  The blood pressure in the umbilical cord was in range, too, which was wonderful news! 

It is so nice to have happy news to report :)  More contractions over the weekend and I definitely feel as though I have "dropped."  The peri noted it too and B mentioned that my walk has changed a bit (thanks, honey!).

Feeling blessed that baby is safe and sound and cooking to the right time. 

36 weeks!!!!  

The other good news to report is that I had my final shot last night too!  B and I are both surely glad that they are done and thankful that they did their job.  I know there is some skepticism about the effectiveness of these shots, but they have worked for me.

Next appointment will be Thursday with the OB...That one should be interesting!  I love playing "Guess the Dilation" game:)

Friday, December 7, 2012

Ticking time bomb!

Well, that is what I feel a bit like; in a good way!

I asked to be checked today at my appointment and I guess you get what you ask for: I am dilated to a 3. 

 And I was having contractions during the NST.

Wow.  Glad I broke down and got the 2012 baby ornament.  I was holding off thinking that he might be closer to his due date....Ha!

Other than that, nothing new at the appointment today.  Just keep on keeping on!


Thursday, December 6, 2012

A blog-readers exclusive!

If you are family/friends and you read the blog- you get the inside scoop on this one... Now I'll really know who is reading this :)

So we have known for awhile what our little blessing will be.  We didn't want to tell the kids due to their desire to have another girl to even out the teams around here.  (Plus Kate cried a bit at Colton's ultrasound when we found out!). 

At any rate, a few weeks back the kids begged to know and so they found out, too, so really no reason to keep it a secret any longer!

Plus, I have been using a certain pronoun more often lately---so we are going to let you in on the secret...

My BBC friends have seen it on my ticker, but didn't really think about it until the other day when a comment was posted and I thought "crap!"  I am a terrible secret keeper (of my own secrets, that is) so to keep this from the general public until now is quite an extraordinary feat, if I do say so myself.

We have a few names we are tossing around, but it is HARD once you already have 2 boys! Colton's name came in the last few weeks before he arrived, so we are confident it will become perfectly clear sooner than later (we hope!). 

So welcome to the "secret circle" that really isn't too secret anymore. 

Tuesday, December 4, 2012

Not great....not terrible...

So today we met with the perinatalogist again for the follow-up fetal echo and growth scan.

Good news...
  • The heart wall is not more thickened than the last time.
  • The fluid around the heart is no worse either.
  • The baby is measuring at 6 lbs 2 oz  which is the 53%ile!!  (This is great for baby!  I am a little nervous as C was our biggest baby at 6 lbs 6 oz---This baby could be HUGE in comparison--not so great for mama;)
Not so great news...
  •  During the ultrasound it was noted that the blood pressure flow was high in the umbilical cord.  So this is apparently an issue that could cause greater problems (low birth weight, placenta deterioration, for example).  
These blood flow issues could all lead to baby coming into the world sooner than expected.  Also, if this went undetected, it could lead to a stillbirth.  WHAT?!?!  From here on out, I will be monitored twice a week.  Once at the peri's office for a biophysical profile ultrasound (to monitor heart rate, breathing, movement) and once at the OB's office for a check-up and NST. 

As far as baby's heart, the pediatric cardiologists will perform an echo once he is born.

And more so....
I am freaking out.  Finally (some would say).  I really feel like I have taken much of the past months news in stride because I knew I would have a little squirt to snuggle and love in whatever form.  But I have to say, when the conversation leads to possibly losing your child, a diagnosis like DS became the last thing on my mind.  When the doc mentioned that stillbirth was a risk, I almost lost it.  However I think I hid it pretty well until the parking lot with B.

I feel more like a ticking time bomb than ever.

We will be induced around New Year's if baby is not already here.  Hoping and praying that he will stay cooking as long (and a safely!) as possible.  We are so grateful for the amazing team at our new peri's office. 

Sunday, December 2, 2012

This week!

Things continue to go so well around here!  Last week there was a night or two that I thought we might be meeting our little one, but after thinking about it, I think I just overdid it those days.  I am trying to be better about resting while Colton rests during the day, but nesting has kicked in full gear!  I have so much I want to do, but the bag got packed this weekend, so I suppose everything else is icing on the cake at this point!

This week is exciting for several reasons...

#1. I get my last shots!! Today will be one and next Sunday the final 17P shot.  I am sure that B is tired of doing this to me and I am ready to not be a pin-cushion any longer.  BUT, I am a believer in these shots as they seemed to have made a difference in holding off preterm labor for the last 3 kiddos.  I cannot believe that this journey is almost in the next phase and will be excited to see how long it takes for labor to begin once the shots are done. 

#2. I have my appointment with the perinatalogist. I am a little anxious about this one.  I feel HUGE, of course, but I hope that baby is also growing accordingly.  I have read about babies with DS not growing much in the 30-35 week mark and therefore needing to be delivered a bit earlier for their health.  Hoping that is not the case here.  Last time little one was in the 55th percentile, so prayers that Squirt is close to that still!  Dr. D will also complete the fetal echo, so crossing our fingers that everything still looks good heart-wise.

Week 35!!!  Here we go!

Tuesday, November 27, 2012

Another update

No news is good news :)  That is at least how I am operating these days, so please forgive lack of posts and assume we are all good, which we are!

Things are going great here. I am getting larger by the moment.  The kid is an active little bug.

I am going to the doctor weekly now and it is pretty dull so far (which is great!).  At my appointments, they are completing an NST each time to double check on baby's heart.  Last week it got a bit interesting as a contraction was recorded during the first 10 minutes.  They had me lay on my side and no more were noticed, so that was good news.  We took the kids to Disney on Ice that afternoon, so I was hoping that the little one would comply ;)

I was feeling a bit different over the long weekend, but with all of us home each day, no traveling, cooking lots and decorating for Christmas, it was no wonder!  I got some rest on Sunday and can feel the difference.

34 weeks--HOLY COW!  I am in shock.  I have 2 more weeks of shots, so we will see if anything starts to shake down once that is out of my system.  With Andy, I stopped the shots at 36 week and he was here at 37.  With Colton, I did the same but he hung out until almost 39.  Who knows with this squirt?!

Other than that, it is pretty boring around here.  I feel a bit like a time bomb waiting to go off.  I am really leaning towards no drugs again this time, since I felt so much better after having Colton , but we will see. Maybe there will not be a choice again this time around?!

I am continuing to read and connect with people in the DS community.  There are so many amazing families out there and it is comforting to not feel alone.  Although, I just feel like going with the flow at this stage, I continue to gather resources and ponder the what-ifs.

This week's appointment is at the end of the week and will hopefully be as boring as the rest have been.  Next week I return to the perinatalogist for a growth check and to complete the echo (apparently there were a few parts of the heart that they couldn't visualize so well).  I am praying that all goes well again and that baby is continuing to grow on track.  Dr. Drake said last time that it is not uncommon for a baby with DS to stop growing later into pregnancy, at which point they are delivered early.  Hoping baby remains around the 55th percentile!

Hoping that everyone had a fantastic holiday with family and friends.  We missed seeing everyone but know that we will get to see our loved ones soon and be able to introduce them to the littlest Jacob around. :)

Tuesday, November 20, 2012


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?!?! 

Wednesday, November 14, 2012

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!

Tuesday, November 6, 2012

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!

Wednesday, October 31, 2012


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.

Monday, October 29, 2012

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:


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 :)

Tuesday, October 23, 2012

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. 


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!

Wednesday, October 17, 2012

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.

Tuesday, October 16, 2012


So, for anyone who knows me, this will not come as much of a surprise.  But I have been reading lots lately.  I started with blogs and such and know I have read several memoirs of families of children with DS.  The first read was Bloom by Kelle Hampton.  I really liked her blog and it was interesting to hear her story more fully.  I have read parts of  Gifts and Gifts 2 and those vignettes were heartwarming as well.  Now I am reading A Good and Perfect Gift by Amy Julia Becker.  Wow.

These women have such courage to share their most intimate feelings.  I hope that I can come close in my own writings so that others may have a deeper sense of our journey.  But reading this morning during Colton's nap caused me to stop and pause and reflect and journal right away.

In the story so far, the baby has just come into their lives with a birth DS diagnosis.  Someone commented that it was good that they didn't know beforehand because then they would be preparing for DS and not for the baby.  "I prepared for a child, a family, a gift--not a condition, a syndrome, a problem."

This really struck me this morning.  I really had to reflect and think about how I was preparing.  I think I have actually struck a nice balance. I have ordered a ton of books (thank you Amazon.com) and I read online a lot at first, but now I am chilling much more.  Most of the books and pamphlets are set for reference once we need them and that is comforting to me.  And, honestly, I started looking at them and was a little freaked out.  I will take it as it comes and the books will be there as needed. 

I am really looking for information from parents who did have a prenatal diagnosis and time to prepare.  I created a poll on the DS board that I have been frequenting as to when those parents found out about the diagnosis.  Shockingly, nearly 70% were a birth diagnosis.  (This is where the data geek in me comes out...) So out of 117 families, 82 found out at or after birth.  Only 35 were prenatal.  Hmmm...just some further food for thought. This is such an interesting adventure!

Monday, October 15, 2012

Next week :)

I got a call from the perinatalogist's office last week and they needed to reschedule my next ultrasound, so I get to see the little bug next Monday! This will be the follow-up level 2 scan to check baby over really well again.  The heart and bowels will be the focus areas, in my mind.

I am excited to get to see the little squirt, but I am also anxious to find out what might be going on.  Having faith that all will be fine and that the fluid around the heart and in the kidneys have resolved, too.  More waiting :)

Other than that, I felt much better over the weekend.  In my medical opinion, I believe maybe the little one flipped into position the other day and is now head down.  I will be extra bummed if he/she is still breech next week.  The movements feel differently and I am having familiar pressure, so I really hope this is just what happens in the third trimester to most moms.

THIRD TRIMESTER!  I forgot to celebrate that accomplishment aloud!  I am 28 weeks and have made it to the final trimester still standing (literally!).  I am trying to use Colton's naptimes wisely.  And, as much as I feel like a lazy bum, I think it gives my body the resting it needs to keep going the rest of the day.  If only I could actually nap too!  The shots are still going well and B has been such a trooper. I know he likes giving the shots as much as I like having them, but I am blessed that he is so patient and kind and gentle--my behind has not been sore much at all!

Thoughts are generally much more positive these days.  I can hardly believe that it is the middle of October. I am generally a "Christmas tornado" and finished quite early with gifts and such.  I am feeling a bit more of a crunch this year based on the "what ifs" that could occur.  I am a good portion of the through our shopping and even wrapped some things this morning! 

We have several other things going right now and once that all calms down, I think my attitude and focus will be much better.  These extra stresses have really bogged down my attitude lately. Which I am not proud of as it is robbing the joy from each day.  One thing I have learned this year---goals and focus and control in one's life is so important.  I am about finished with those that lack those things and refuse to move forward and control their own destiny.  I do believe there is an ultimate plan for us by Him, but for the love of Pete, those who just sit back and complain about the life happening around them is such a joke.  Vent over:)

Friday, October 12, 2012

One of those days

So today it hit me.  Am I perfect storm for pregnancy?  I started having some aching and contractions this morning and started to worry immediately.  I had been very worried about this with the boys after our experiences with Kate, but things have been going so well that I haven't really worried about it much with this pregnancy.

Here's a quick background....During my pregnancy with Kate, I started into labor and didn't even know around week 27.  When I saw the doctor, he noticed the signs and put me on bedrest.  That lasted a weekend before I was back in the office as we thought my water broke.  I was in the hospital for a week at that point while they stopped labor and gave me steroid shots for her lungs. Anyone who has experienced Magnesium Sulfate will understand what a horrible week that was.  Many parts I don't even recall because I was so out of it.  At any rate, I was released to bedrest at home and lasted until 32 weeks when it all started again and she was delivered that night. 

She spent 30 days in the NICU coming home the day after Mother's Day.  It was a frustrating and worrisome time, but thankfully within the year, she was right on track and you would never know looking at her today that she was 8 weeks early.

With the boys, I knew much more what to expect.  I was monitored much more closely and was also given weekly progesterone shots (17P) in hopes of keeping labor at bay.  I was on partial bedrest with the boys starting about week 18, too.  This all worked as Andy was 37 weeks and Colton made it to 39. 

Fast forward to this little one.  I am no longer "working" (ha ha ha!) and have a 14 month old to chase around. I have been feeling pretty fantastic (despite the heartburn and back aches).  I have been able to keep up, for the most part, and still be a mom and wife (and housekeeper and cook and...). 

Today, though, I started to get lots of tightening.  I started to freak out a bit.  Holy cow, what if this little one comes early?!?!  How will the impending diagnosis impact any other "preemie" issues that could come into play?

I am going to lay low this weekend and hope that things chill out.  I am 28 weeks this weekend, so barring any DS related issues, baby would spend time in the NICU, but probably be just fine.  Tiny and need lots of support, but fine.  

Praying for the little one to stay put.  Praying for me to know when to say when.  Praying for my family's understanding.

Tuesday, October 9, 2012


On one of the baby boards I check out online, I noticed a signature a mom had.  (For those of you who are already lost: a board is like an online chat and a signature is included on some people's posts with identifying info for that member). 

This was on the Down syndrome board on BabyCenter.  Most of the mom's list when their little one with DS was born and/or medical complications that little one had.  This mom included that, but also included a detail about her other two children.  I cannot remember exactly what it said, but something about one having curly hair and the other having brown eyes:)  I LOVED it!

It made me think about how we all have SOMETHING that is different and unique about us.  It made me think that we all have things come up that are unexpected.  It made me think.

Here is what my current siggy (or signature) reads:

SAHM ~ most work I've ever done and loving it!
DD (2005) ~ DS (2006) ~ DS (2011) ~ (t21) EDD 01/06/13
Angel babies '03 and '05

But it could easily be changed to:

SAHM ~ most work I've ever done and loving it!  (although my house is never any cleaner, I am less "put together" and I am somehow more exhausted than when I was "working")

~  DD (2005)  born at 32 weeks, has red curly hair, freckles and is so kind-hearted
 ~ DS (2006)  born at 37 weeks, has (had?!) Eosinophilic esophagitis, a contagious smile and is seriously one of the funniest people I know
~  DS (2011) born at 39 weeks, also has very red hair, chubby cheeks and allergies to milk, eggs and peanuts; is becoming a daredevil (which frightens me just a bit!)
~  (t21) EDD 01/06/13 -- will probably arrive in late December and after that who knows?!!? We are just his/her parents along for the ride

Angel babies '03 and '05  (I miss this 2 little ones we never got to see.  It makes me wonder how they would have impacted our life.  It makes me wonder if it was God's plan for us to only have them for a short time.  These experiences help me to have a great respect for life and to remember to hug my kiddos often.)

There is so much in life we have no control over and I must always remember a phrase I heard back in grade school: let go and let God.  It is becoming easier and I feel much more peaceful because of it.

My priorities are set and my goals are in mind.  If I can stick to that, I know we will be ok.  

Sunday, October 7, 2012

Love this post!

As I continue to struggle with the perception and reality of the diagnosis in the world around us, I happened upon this article and loved it!


Saturday, October 6, 2012

Next appointments...

I can hardly believe that I do not have any pregnancy related appointments until the end of the month! Is this what a typical pregnancy is like?? Whoa!

I will be having another level 2 scan at the end of the month. They will be checking out baby again, especially focusing on potential bowel and heart related issues. It should be a good time to see everything and prepare for anything prior to birth. Not sure how many more ultrasounds we might have after that. What we seem to hear is that if there are heart issues, those will take some time to deal with. They like to wait until baby is nice and strong before surgeries with the heart. The bowel issue seems a bit different a that would be taken care of much sooner after birth. Hoping we don't have to deal with either of these issues, but only time will tell!

The other question I keep getting is how are we doing with all this. Honestly, I am at a point where I am a bit emotionally spent. I have read and researched and googled so much, that I feel a bit on overload. The one thing that I am sure of is how wide a spectrum this diagnosis can entail. That unknown is what is hardest right now because I cannot plan ahead for this and must trust and go with the flow.

There are several words that continue to plague me as my thoughts drift during the day and night: retardation and termination. There are so many things that I have been unaware of in life (truth be told, I was blissfully ignorant and wish I could be again). I have crafted several posts encompassing my thoughts around this, but am still struggling with it. All I keep coming back to is the apparent statistic that 90% of parents who receive this diagnosis prenatally decide to terminate the pregnancy. This is something that is truly eating at my core beliefs and I cannot believe it. I am so grateful that my husband and I both agree on this and we are carrying on together. I may post more later about this, if the words come.

How are we doing? Living life as best we know how and loving our kids. Now that I think about it, I can't imagine that will change with our new arrival!

Tuesday, October 2, 2012

Appointment updates and more signs from above

Well, I finally passed my glucose test yesterday--YAY!  SO once less thing to worry about there.

I also had my appointment with the new OB.  I liked him and we just talked about my history and current issues with this little one.  There are a few things that I need to think about and consider in switching.  It shouldn't surprise me, but it always does when I here conflicting ideas about care.  There are a few things that Brian and I need to talk about.  (Brian wasn't able to be with me yesterday because he had taken Andy to Ohio for hopefully his final scope for his allergies!  what a week!!)

The good thing is that my preterm labor issues are non-existent thus far, so really I am a "normal" pregnancy unless something changes.  It also sounds like the later that we do the next anatomy scan, the more that might be able to be seen.  As much as that is stressing me out, I would rather wait and know what we have going on, if anything.  So, we will see! (darn that patience again!)

Another amazing sign was given to me today.  I was up with Colton early this morning and a thought came to me to call a former co-worker who is involved in a MOPs group.  I has this sudden feeling that I should contact her because she would help me on my journey somehow. I got in touch with her today and just asked if anyone in her group had kiddos with special needs.  She mentioned a few things and about a woman who had an issue that was pregnant currently.  I asked if she could tell me more and got goosebumps reading her response as she mentioned chromosomal abnormalities and a missing nasal bridge.  Holy $hit!!!!!  is what I wanted to say, but I then my surprise went away.  This conversation was planted to be had by something much greater than me.   I am hoping I might be able to connect with this mama and see what role she has in my journey.

It is another gorgeous fall day here and although my heart and head have had much worry lately (I've been crafting a post that isn't on the happiest of related topics), it is moments like these that remind me to keep the faith.  Everything truly does happen for a reason!

Saturday, September 29, 2012


Well...I think the name of the game from here on out is patience (which it honestly should be with kids anyway!).

  • I am waiting until after Monday to create a care plan with my new OB. (I got in in record time thanks to my previous history and the nuances associated with this little one!)  
  • I am waiting until week 28 when they can better visualize the baby's bowel to rule out Duodenal atresia. 
  • I am waiting to share with more people until we know a little bit more about baby's health status.
  • I am waiting to join the local group Up With Down and Gigi's Playhouse and start connecting with families that have been through all this
  • I am waiting to just snuggle this little squirt!

Then, once the little one is here, we will again be waiting to see how he/she really is.  When milestones will be reached, what support might be needed, what daily life will really look like.  Patience.

So, without any alternatives, I will wait.  I hit the 26 week mark today, which is incredible.  With Kate I was, unknowingly, beginning preterm labor.  With the boys, I was already on partial bedrest.  I am starting to get a bit more uncomfortable, mostly back pain because I keep toting Mr. Colton around, but we will get through.

We toured the new hospital last weekend and now I just need to get forms filled out "just in case."  

14 weeks or less--AAAGGGHHHH!!!

Friday, September 28, 2012

After the diagnosis

(Author's note: This is where the posts begin in "real time"-- I finally have a few moments to reflect!)
Time has continued to fly by since the official phone call from the genetic counselor.  Beyond all the regular chaos of having 3 children, we have been working to create a plan for baby's arrival.

Shortly after meeting with the GC, we both had a revelation that delivering our little one at the hospital we had the others would mean an association with the pediatric specialists in its system.  It is no surprise to anyone who has known us for awhile that we were less than thrilled with the level of care that Andy received after his EoE diagnosis years ago.  We did not agree with the way our pediatric GI "managed" his care (hence many trips to Cincinnati) and decided that we did not want our little one to be in his care either. 

We are very lucky to have 2 hospitals in the area that have very good NICUs, so we began the process of switching OBs and getting paperwork ready to deliver at another hospital.

In the meantime, I had yet another pregnancy first--failing the 1 hour glucose test.  I am not sure why I was surprised. Everything seems to be different this time around! So next week I will be doing my 3 hour glucose test--Yay! 

Also next up, I will be meeting with my potential new OB next week.  This is where the story continues to be blessed, in my opinion. I asked around on FB who had an OB in the health system I needed that they loved.  I got so many emails about 2 doctors in particular and was just so surprised that there were OB/GYNs out there that were so caring and compassionate.  I never really cared for my doc's bedside manner, but he had helped keep Andy and Colton cooking to full-term, so I just dealt with it.  I knew I was meant to switch for this extra special pregnancy and get real care.

It takes awhile to transfer records, apparently.  I am sure mine took up a small truck too :) When they finally were received I spoke to the nurse 3 times in a 20 minute timeframe as she gathered information and realized I would not be a "boring" pregnancy case.  We spoke on a Friday.  After talking with the doctor, she scheduled me for Monday. 

I am so excited to meet with them and discuss what the rest of my pregnancy will look like. (never thought I'd say that about an OB/GYN!)

Blessings in disguise, yet again!  Had we not gone through the journey with Andy, we would not have looked for alternative care this time around.  Hopefully this will be the right fit for our family!

Thursday, September 27, 2012

The wait.... and the call

8 days can be a flash or an eternity.  For me, it was a mix of both, somehow.

Speaking for myself, I already knew the answer we would be getting.  There were several signs sent our way that week that may have seemed coincidental, however, I believe it was all there to confirm my thoughts so that we could continue on this journey.

The hardest part of this time was how to deal with it.  I am a talker.  My husband, thankfully, understands this and was fabulous, especially during this wait.  We didn't really want to share what was going on with anyone, but did tell a few people.  I didn't want people to worry.  I didn't want to have them drawn into this craziness until we knew for sure.  I didn't want looks of pity or sympathy, depending on the outcome.  This was our baby, either way, and we never considered otherwise.

I believe that everything happens for a reason as a part of God's plan.   This baby was ours and if God intended us to go down a different path, He would take care of it. Several people knew about the my ultrasound and what we were going through, many by happenstance. I am so blessed that I had genuine ears to listen and support us.

I did have a small number of conversations that I drew back from quickly.  They were the conversations that I expected more of.  Those more of sympathy and sadness about the potential diagnosis.  About God's will not being this for children, or anyone.  These are the conversations I had dreaded.

I was not proud of how I just listened to those speaking in this way.  I wish I had been strong enough to assert my beliefs.  I wish I had reminded them of the will I believe God has for us all.  I wish I had walked away.

In retrospect, I have learned a valuable lesson here.  I will stand up for my kids and beliefs and develop a much thicker skin.  I have worked to advocate for my kids, but with this upcoming diagnosis, that will be tested, I'm sure.  What a powerful way for Him to remind me through other "believers."  I have so much to learn!

I spent many sleepless nights that week.  I found support online through Down Syndrome Pregnancy and Birth Boards.  I searched and searched about absent nasal bones.  The more I looked, the more confident I felt that our little one would have "designer" genes as one mom put it.  

September 12, 2012  4:00pm
The call came.  Exactly 8 days after drawing blood.  The genetic counselor asked whether I wanted to talk about the results in person or on the phone.  I had a sense of calm as I verified my information so we could talk over the phone.  I knew what I was about to hear and prolonging the inevitable was not going to change anything.  She explained that the test results were indeed positive for Trisomy 21. That would indicate our baby has Down syndrome with 99% probability.  She explained about the test and what this would mean for our pregnancy and life.  She offered a meeting to go over things, so we set a time for the following week.

As I got off the phone, I breathed out a breath I didn't realize I had been holding. I dialed Brian at work and the tears began.  Although, this time, they were much more of relief and of contentment of knowing, rather than fear or worry.  I am sure Brian loved to have this conversation on the phone, but I could not hold the information in. I had to let it out and let it be real.

The next day (I think) we called our moms to let them know as they had been patiently waiting with us.  Their love and responses were so crucial in the process of acceptance.  They were with us.  This was their family too, and they were more ready to meet the new little arrival.

I honestly wasn't sure how to fill the other people in that knew.  Their prayers and thoughts that week truly gave me the strength and patience I needed.  I just couldn't bear the thought, just yet, of having the conversation over and over.  I drafted this note, Brian edited it :), and I sent it out with the subject: update.  

We found out this week that our new little bundle of joy will likely join our family and teach us about what an extra chromosome means.  

Although we are opting for no further testing, we believe that our newest little person does have a diagnosis for Down syndrome.  Since our initial markers came up, I have really felt that this is God’s plan for us.  And, even though I am worried about health complications that may arise in the future, I am reminded that each of our children has brought a new set of challenges and worries and I don’t believe that will ever stop as long as I am a parent.

Next week we will meet with additional doctors and create a care plan for the rest of the pregnancy and support beyond. I feel you were brought into this part of our story for a reason.
I didn’t share this with many people, but I am truly grateful for the support and prayers for patience and strength over the past weeks (I imagine those might still be needed in the years to come!).   I am so appreciative to be able to share this with others as the joy builds to the little one’s welcome at the end of the year.

One thing I am really looking forward to is seeing the love and acceptance from our kids on baby’s birthday.  Unless some medical concerns arise over the next weeks, we do not plan to really share this news.
Our biggest concern is that our own kids (one in particular who is like her mother :) would worry so much about the baby for the rest of the pregnancy, and really there is nothing to worry about.

Brian and I are so excited to meet this new little one (once he/she is full term, of course!) and learn so much more about love and life and we thank you for the continued prayers for baby’s health and support on this journey!  I can’t wait to meet that little one!

“Now faith is being sure of what we hope for and certain of what we do not see.” Hebrews 11:1

The responses and calls I received were overwhelming and I was so grateful for those that were brought into this journey to support us.  The ride is just beginning!

Follow-up with the specialists...

Waiting is not a particularly strong suit of mine.  I am learning, ironically through my children, about patience, but man, it is HARD sometimes!

In the time between appointments I really had a sense of calm.  Although I was anxious to go, I was more looking forward to some answers and moving forward from there.

September 4, 2012

That day Brian was able to come and we walked in ready for anything.  The tech doing the ultrasound was also very detailed and talked us through much of what she was doing and seeing.  Parts and pieces were all still measuring on track, so we were pleased about that.  She took a looooooonnnnnnnggggggg time looking at the heart.  I kept giving Brian the "oh no!" look and we waited while she went to got get the doctor. We did get to see baby in 3D, too, which is always incredible to me!

When the doctor came in they spent some time together looking at the heart and discussing quietly what they did/did not see.  The tech was unsure whether there was tissue between two of the heart chambers, but the doctor believed that he did see tissue, so he said that was nothing to worry about. Phew!  We knew from our research that heart defects can also be more common in babies that have DS.

The doctor then showed us the areas of concern.  They also did not see a nasal bone, which was the strongest marker.  In addition, they saw a bit of fluid around the heart and a dilated kidney.  The last two markers, he said, would not be of any concern typically- in an ultrasound he wouldn't even mention them- however, they are both soft markers for DS too.  Together, the puzzle was coming together.

He let us know that these are just screenings.  An amnio would give us a definitive answer, but we were unwilling to take that risk and lose the baby.

Our other option was a blood test.  They were newer on the scene, but would tell us with 99% accuracy whether there were issues with the top 4 chromosal abnormalities. The test we were offered was called Verifi.  It was non-invasive, just a blood draw for me.  We would know results in 8 days.  We decided to go ahead with this test, so that I could have peace of mind for the remainder of the pregnancy.

8 days.

The ultrasounds

When I went for my first ultrasounds with baby 4, I was so focused on cervical lengths, that everything else was secondary.  We had seen the little one a few times and the heartbeat.  I had a doppler at home and listened to the heartbeat daily.  It was all about the cervix.

The 12 week ultrasound recorded a cervical length of just under 3.  Not good.  I relied on data from the KeepemCookin' website to guide the numbers and this was not looking good.  I decided to go ahead again with the 17P shots in hopes to prevent preterm labor again this time around.

At 15 weeks, before starting my shots, I had another measurement done and it was nearly the same, not worse.  Things were looking up!

August 21, 2012
This being baby 4 and not having major issues, I didn't reschedule my 20 week anatomy scan when I found out Brian had bids that morning.  I had already waited 2 extra weeks to schedule once the kids were in school and we were seasoned parents. I skipped off to my appointment anxious to see the little one moving and grooving around.

The tech I had that day was my favorite of the two at the office.  She was always very friendly and informational.  She checked my cervix first and measured it at 3.5!  I was thrilled--it was longer than the first times and that was great news.  Then she moved on to check out the little one. We (I) decided that we would find out the gender, but keep it to ourselves this time.

 ***sidenote: With Colton, we brought the kids that day so that they could find out when we did.  Kate cried when she heard/saw it was a boy.  We did not want any tears this time around and thought finding out and seeing the baby at the same time would be best***
The tech was wonderful as she measured and checked all the pieces and parts of baby Jacob.  She talked to me as she worked and printed out many photos for me to bring home.  I was on cloud 9 knowing that all the parts were there and breathed a huge sigh of relief that I didn't even realize I had been holding during the scan.  

I waited to meet the doctor and continue to plan for the rest of the pregnancy.  I waited much longer than I believed I would and my stomach dropped a bit when I met the doctor's eyes as he walked in.

He asked me a few questions and then asked me to join him sitting down.  I won't soon forget his words, "These are difficult ultrasounds to go over and share."  At that moment I felt like I was watching myself from afar or on television. I felt like I was listening in on the conversation as a third party.  The doctor continued to show me the images from the ultrasound and assured me that all the baby's functions looked good and is healthy.  Then he stopped when he got to the baby's face and profile pics.  He talked about the baby missing a nasal bone and how this was a marker for Down syndrome.  He assured me the tech was quite qualified and usually saw things clearly. (I remembered back to the scan as she struggled to get a "good" profile pic and had me move around a bit.  I never noticed anything off, but it was odd that she looked for a long time.) He went on to show how everything else looked just fine; no other markers. 

As he finished, his other comment still remains in my heart, "You will need to talk with your husband and decide what to do."  I listened as he talked about a referral to a perinatalogist for a level 2 ultrasound and possible amniocentesis for a diagnosis.  I left the office and cried on the way out to the car. I was so worried about all the medical and social ramifications of what I had just heard. I had planned to go to the store and pick up a cute gender-specific outfit to share the news with daddy. Now I just wanted him to hold me.  I drove the 40 minutes to his office, praying he wasn't on a job site and called him to come out to my car.

I felt such a heavy heart as I shared with Brian that our baby may or may not be "perfect." My emotions overwhelmed me and my husband comforted me through. We talked and he reminded me of several things:
  • We always opted out of testing because we would never terminate a pregnancy
  • I do not need to worry about "what ifs"
  • Our baby was healthy
  • We will get through this
I decided at that moment leaving his office, that we indeed would be just fine.  This baby was meant for our family in whatever form it took and we would welcome it just as we had the other babies.  A little retail therapy was called for and after buying a few cute outfits, I was ready to face what was headed our way.  Don't get me wrong, I had a billion questions and doubts, but I also felt a sense of calm that we would all be ok.

I called that afternoon and scheduled an appointment with the specialist.  It would be 2 weeks of waiting and googling and reading and researching.  The nasal bone was a "new" marker to look for in scans and it was often hard to detect.  I was sure that this was the case and that our follow-up would show a nasal bone and I could go back to worrying about my cervix as usual :)

Tuesday, September 18, 2012

Number 4 is on the way!

After the beauty of the positive pregnancy test, for me, the worry sets in. It is a constant barrage of questions in my mind:
  • Will I miscarry again?
  • Am I spotting?
  • Do my boobs hurt?
  • Will I make it to term?
  • What will my cervix do this time?
  • Will I get shots?
  • Will I be on bedrest? 
  • What about the other kiddos?
The list in endless, but in this pregnancy, started off much earlier.  As in the other pregnancies, I started spotting at 6 weeks.  I made an appointment and went in for an ultrasound.  The tech was quick and quiet and my heart sank.  As I waited to see the doctor, I knew I had not seen a heartbeat.  I googled in the waiting room what a 6 week ultrasound might look like.  Our little pics looked nothing like what I saw. I was sure of my dates, so I immediately thought the worst.  In meeting with the doc, she ordered a follow-up ultrasound in a week's time, but also did not give much hope.  Either my dates were off or this was a miscarriage.  I prepared for the worst.

That was a long week (and maybe a sign of things to come).  We went for the follow-up ultrasound expecting to see nearly the same thing.  However, this time I noticed something immediately-A HEARTBEAT!  It was unmistakable to my novice eye and we were so thrilled.  For now, the little one was right on track and beginning to grow into our newest baby.  We crafted a plan of attack beginning at week 15 with shots and a few cervical checks along the way.  I couldn't wait to see more pics of the little one soon.