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!