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.



Wednesday, January 30, 2013

One month

It is such a surreal feeling when I think about Owen being 1 month old already.  Then I think back further and realize that the past (almost) 8 years since Kate came into our lives has gone just a fast.  Time as a parent really does not slow down at all.  It's too bad this time with kids races on; there is so much to enjoy in it!

With a month left of my pregnancy, I recall thinking about trying to enjoy it as much a possible.  Each kick and flutter.  Each ultrasound.  It is most likely the final pregnancy experience I will have (although we thought that with Andy, so anything is possible, I suppose!). I now look back to that date and wonder how that season is over and done AND now the newborn phase is nearly past as well.

Time surely does fly (when you are sleep deprived).

In one month's time we have... welcomed Owen with concerns of heart problems.  Spent 6 days in the NICU.  Brought a baby home on oxygen.  Had another (baby) break a leg.  Visited many doctors. "Adjusted" to our family of 6 status.

In one month's time we have...discovered the joy that is our new son. Seen the love of our children in welcoming Owen.  Witnessed the love and support of our family and friends.  Praised Him for all the things that have gone so right, despite the Down syndrome diagnosis.

There is no way to know what lays in the cards for Owen.  He has so many things on his side: no major health concerns.  Interventions and professional support to guide his progress.  A loving family that will help him become what he wants to become. But, if this first month is any indication, there will be lots of ups and downs along the way. 

This is great time to remind myself to live in the journey and not just wait to find out how it ends.  "Faith is being sure of what we hope for and certain of what we do not see."  I will keep the faith and my eyes to the future and all it holds for our family.

I know the days and months will continue to push on.  I must remember to live in the moments and be present for my kids.  As I am coming out of the newborn fog, this is key for me. 

We only get one chance at this life.   I will not waste it.

Friday, January 25, 2013

"Who told you that?"

It's been a bit, but things are still going well here. No news is good news, I suppose!

Owen is doing great.  Typical baby stuff-- eat, sleep, poop.  (Not always in that order, though.  He really prefers to poop while eating!)

The issue we are dealing with right now for him is hearing.  He has such tiny little ear canals that they are struggling to get a good hearing screen in.  He has failed the hearing screen 3 times now.  Today we took him to the ENT to determine whether he had some fluid in his ears.  He will get a diagnostic hearing test at the beginning of February, so we are hoping for some answers then.  Praying that it tells us one way or another (not a middle ground of "some" hearing loss).

Anyway, while we were at the ENT he asked what other questions we had and we asked if there was anything special we needed to do because of his absent nasal bone. 

The ENT's answer, as he squished O's little nose around a bit, "Who told you that?"  We explained about the ultrasound and that being the initial marker that led us to his diagnosis. 

Who says I don't have a nasal bone?
He said to forget about that.  He has a nasal bone.

Hilarious!  I thought he and Colton have the same nose, so I wondered the other day if Colton didn't have one either. 

Oy. Vey.

So to sum up our ultrasounds vs. Owen's reality:
  • No nasal bone present in ultrasound ---- He has a nasal bone
  • Dilated kidneys seen at 24 weeks ---- Kidneys are just fine
  • Pericardial effusion (fluid around the heart), which ultimately led to inducing him ---- no fluid seen by cardiologist while performing the echo on O after birth
  •  Thickened heart wall seen on ultrasound ---- heart wall is thickened still

Reminder for mom:
  • Medical science is not perfect.



This also really gets me going more on the topic of termination.  But I don't have the energy to focus on that right now.  All I can say is that SO many people make the decision to terminate based on the T21 diagnosis and a marker or 2 from the ultrasounds.  Clearly, this is not an exact science (as much as we would like it to be) and it makes me incredibly sad that so many babies are aborted, potentially, based on inaccurate tests.  I know this can be a hot-button topic, but walking the path we are, I feel a bit obligated to share my thoughts.  Hey, if it caused one parent to pause about a life-altering decision-it will be worth it.

Tuesday, January 22, 2013

Rolling along---literally!

The setting:  Our living room floor

The audience: The family

The event:  HE ROLLED OVER (4 times!)

video


We could hardly believe our eyes!  I was so glad that dad was home too.  (Otherwise he may have not believed me!)

The little squirt was doing his tummy time and just rolled right on over.  I am still a bit in shock since he is only 3 1/2 weeks old.  Yesterday he was on his side quite a bit and that surprised me too.

The funniest part:  Kate saying right afterwards, "I thought you guys said it would take him longer to do things?!"  Ha!  Way to make us liars, Owen!  :)

Tomorrow the physical therapist comes to check him out, so this should be fun.

I realize that O may not make all his milestones when we hope he does or think he should, so this is such a nice surprise--can't wait to see what he will do to surprise us next.  Keep us guessing little one!


Thursday, January 17, 2013

Sharing the *big* news with the kids---warning---this is incredibly anti-climatic!

Last night B and I decided that we would talk with the kids about Owen's diagnosis.  Not sure why this felt like the moment, but now that they have been around him a bit and seen that he is ok and that we have dodged so many medical issues, I felt like it was the right time.

We had bought the book We'll Paint the Octopus Red awhile ago and planned to use that to share with them.  I hadn't created a lesson plan, we just felt like we would share the book and talk about how it connected with Owen and then see what questions they had.



I knew this was going to be interesting when it took several minutes to even get started reading because little ones needed drinks and snacks and such.  

Kate asked if she could read the story, so she read it aloud as we all listened and watched.  As we got through the book, we explained that Owen was like the little brother in the story and that he had Down syndrome.  We said it might take him a bit longer to do some things, but that is why he would need our help and support and love.

Their response?  Very little.  They just kind of said ok and then went on about life. 

Andy said something, totally unrelated to our conversation, that was funny and even Colton laughed at the moment.  That is what I remember from our "talk."  Moments of normal family life where kids are unpredictable and totally unaffected by the conversation that we had.

B and I just kind of laughed.  Of course, I wasn't expecting a ton of questions at this point.  I wasn't expecting sadness because they had no preconceived ideas about DS.

I wasn't expecting much, but I was expecting something

As I thought about it the rest of the night, I reminded myself how this is really what I wanted.  I wanted our kids to not bat an eye at this.  I wanted them to take it with a grain of salt.  I wanted them to see their brother and love on him and NOT think about DS. 

That is the gift we have gotten from so many people, but most genuinely from our children.

O is their little brother.  Period. 

I LOVE that!

I am glad that it is "out there" so to speak so that if the kids hear something about it, they can ask questions. I never want this to be something we try to hide or that is taboo. 

It is a part of our life now, but it is NOT our life. 

The groundwork is laid and who knows what questions will spark along the way.  Stay tuned for more on our journey!

Tuesday, January 15, 2013

New pics


 Here are some pics of the little guys in the house.  Colton with his first and second cast and Owen with and without his tubing :)






Monday, January 14, 2013

An INCREDIBLE day!

It was a amazing appointment for Owen today with the pulmonologist. 

He spent nearly an hour with us talking, discussing and observing Owen on and off the oxygen. We have rarely had a doc spend that amount of time with us and we really appreciated it as we felt this was a big step for O.  It was clear partly into the appointment, though, that he felt Owen was doing well and would not need the oxygen any longer.

AMEN!

So we now have a little guy free of all cords and tubing!!

This is a tremendous blessing as it makes traveling with the little people so much easier.  Now a trip to drop off or pick up the kids from school does not appear to be a mini-adventure or so daunting a task. 

Also, it means that we can actually carry our son throughout the house without 50 feet of tubing trailing behind.  Phew.

Next steps for Owen include a recheck of his hearing and an evaluation by the AEA to see where we might need additional support.

We are so grateful to all who have joined us in this journey and have kept our family in your thoughts and prayers.  There have been moments of worry and fear of what the future may hold, but I truly believe that we have dodged so many of the major issues that could have impacted Owen. 

We realize that this is only the beginning of our journey in raising a child with potential special needs, but it has really been a blessed beginning as well. 

Hug you kids tonight--they really are such a miracle in our lives! 

Thursday, January 10, 2013

Still have not lost my mind...but the night is young!

Well after the last few days, I am thinking that my New Year's resolution is really being tested.

And it is only January 10.

It is most concerning when I hear the tone in people's voices or messages. They are making sure I am still partially sane and I appreciate it. I feel like a potential train wreck ready to happen. I told B tonight that this must be how Lindsay Lohan feels all the time;)

We had a good day. Grandma toted Colton around the house and he took a good long nap. He is uncomfortable, you can tell, but not screaming and generally in good spirits. B said at the ER, he even held his leg up when they splinted it. The doc said they usually have to hold kids down for that part... He is one tough little squirt and I have much to learn from him, too.


Today we took him to the orthopedic doctor and it was really good news!  No break through the bone; it is a "buckling" of the bone.  That means he only needs the cast for 3 weeks and should be as good as new!  What great news!! 

The funny part is when the tech was wrapping the new cast...She said she would probably see us back before then because the little guy might wiggle out of his cast!  He is really scooting around and on the move again, so I won't be surprised to soon find him in one place and his cast in another!

We also had Owen's 2 week check up today.  It was relatively uneventful, which I was grateful for.  I am also grateful for a doctor who is thorough and checks on things.  We had a great conversation about Owen's start to life and where to go from here.   She even had a list of questions for me!  It was wonderful to feel heard and understood. 

So all in all, I have not lost my mind (yet).

 I even got a shower today.

Thanks for all your prayers for the little guys in the house. I keep hearing the phrase "this too shall pass" and I really know it will!  We are really so lucky and blessed that all we have encountered recently has turned out very well.  Instead of complaining about not showering or napping, I could be complaining about preparing for open heart surgery, orthopedic surgery or worse...Praise Him that is NOT the case for either little guy! 

Perspective is a glorious thing and an easy gut-check for me lately.  We are incredibly lucky and blessed.

This too shall pass.




Wednesday, January 9, 2013

Another day. Another challenge.

So just when you think things are going swimmingly.  Bam.  Another test.

B just called me from the ER, where he took Colton tonight.  His leg is broken. 

Are you freaking kidding me?

They are waiting to speak to the ortho doctor and getting a splint before heading home. 

I still wonder how this happened when he was literally right in front of me.  We were in the bathroom (one of the joys of being a mom--never using the bathroom alone!) and he was on the step stool.  He started to fall backwards and I caught him.  Grabbed him before he hit his head, so I thought I saved the day. 

Apparently not.

Right afterward he screamed in pain.  And I knew something was not right.  He has had far worse bumps and bonks and hardly made a peep.  This time he had real tears and held his foot/leg.  He wouldn't put any pressure on it and just wanted to be held.  There wasn't any swelling or signs of a problem, just his obvious pain and discomfort.  Gave him some Tylenol and B got him to sleep. 

I planned to take him to urgent care in the morning, but he woke up and was still in pain.  B took him to the ER and, sure enough, broken. 

My poor little buddy. 

So now on top of O and his O2 fun.  I will also be toting around a 17 month old in a cast.  Not that we are going anywhere ever anyway. 

Grandma to the rescue!

My mother in law will soon regret saying we could call her at anytime for help.  I am sure she didn't mean at 2:30 in the morning.  She may be changing her number soon.

I am so thankful that my husband took him tonight and pray that he can make it on his business trip tomorrow on very little sleep.  That man continues to amaze me in the way he selflessly cares for our family.  I only hope that our children see what a fine example of a man, father and husband he is and that they can work towards that in their lives. 

Praying the little guy heals quickly and is back to tearing through the house with his big brother soon!

Tuesday, January 8, 2013

Just eating bon bons all day and watching the soaps

Ha!

Someone asked the other day (I think jokingly) why I hadn't been blogging as much.

Well, it is just these little people that keep getting in the way.  :)

While it is WONDERFUL being home, I haven't had the "free" time I did at the hospital.  Pesky things like cleaning and laundry keep me busy during my "free" time now.  And it is great.  Really.

We are on day 2 of me by myself with the kids since the grandparents and dad have left us during the day. It is actually going really well.  Except my little boys cannot coordinate their naps yet, how dare they?!

I did get a 15 minutes cat nap yesterday, so that was heavenly.  And B has been AWESOME at night and feeding Owen while I pump, therefore requiring me to be alert only half the time I would have to be.  Love that man.

O is doing great!  Yesterday (I think it was, at least) he was kind of lower in his SATs all day and night. We (I) was worried, but last night and today he is doing fabulous.  It occurred to me about 3 am the night before that we had gotten a Rock n Play sleeper and it was still tucked away.  Those are miracle-workers for our babies--they sleep like a log in them!  So 2 nights of good sleep, in baby increments of course, and I feel like a new woman.

Now, if only I could get a shower...

I am so grateful to those who are helping us out right now.  Friends are driving the kids to and from school this week so I do not have to deal with the oxygen and pulse ox machines in the van.  That has been a wonderful gift this week.  Many others have offered support and help and we are really appreciative for that.  (they may live to regret it though, when I call for help!)

What is in store next??

We have our 2 week check this week with the pediatrician.  Not thinking much will come out of that as long as he is gaining weight and such.  Then next week we meet with the pulmonologist to discuss the oxygen.  Anxious for that one; but would much rather that than an appointment with the cardiologist! 

Here is how I found Mr. O yesterday... Clearly he is a big fan of the nasal cannula!


And not to be outdone, Colton has already learned that while I am feeding baby, he has a bit more freedom.  From his pants, at least.

And not to leave the other lovies out.  Here are Kate and Andy holding Mr. O! Kate is obviously impressed that I am taking more pictures! And this is the first time Andy is holding O.



Well, that is the newest information from here.  And since this post took me nearly all day to get together, please assume that no news is good news :) 

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

Sunday, January 6, 2013

A song that keeps coming into my life


Laura Story - Blessings


We pray for blessings
We pray for peace
Comfort for family, protection while we sleep
We pray for healing, for prosperity
We pray for Your mighty hand to ease our suffering
All the while, You hear each spoken need
Yet love us way too much to give us lesser things

'Cause what if Your blessings come through raindrops
What if Your healing comes through tears
What if a thousand sleepless nights
Are what it takes to know You're near
What if trials of this life are Your mercies in disguise

We pray for wisdom
Your voice to hear
And we cry in anger when we cannot feel You near
We doubt Your goodness, we doubt Your love
As if every promise from Your Word is not enough
All the while, You hear each desperate plea
And long that we have faith to believe

'Cause what if Your blessings come through raindrops
What if Your healing comes through tears
What if a thousand sleepless nights
Are what it takes to know You're near
And what if trials of this life are Your mercies in disguise

When friends betray us
When darkness seems to win
We know that pain reminds this heart
That this is not, this is not our home
It's not our home

'Cause what if Your blessings come through raindrops
What if Your healing comes through tears
And what if a thousand sleepless nights
Are what it takes to know You're near
What if my greatest disappointments
Or the aching of this life
Is the revealing of a greater thirst this world can't satisfy
And what if trials of this life
The rain, the storms, the hardest nights
Are Your mercies in disguise

Whoa.

I forgot what it is like to have a newborn in the house. They sure can be night owls!

I also did not consider how often his pulse ox monitor would erupt in the middle of the night.

Sleep is so not overrated.

We are managing a few hours each night, though. And I even got in a shower today!

It's the little things in life to celebrate!

Mr. Owen had a follow up check yesterday for his billirubin (jaundice). Thankfully his number was down, so that means we do not need a billi blanket or light treatment! Woo-hoo!

The car ride was interesting and I was grateful Brian could come with to help. I am also incredibly grateful for friends who are going to help transport kids this week so I do not have to tackle the oxygen tank exchange several times a day for school.

Settling in to the new normal!

Friday, January 4, 2013

We are HOME! new pics :)

After a busy morning yesterday following up with the doctors and specialists, we were discharged and home by lunchtime!  AMEN!

What an amazing feeling to have all our little ones under the same roof and have the stress of missing someone while we were either home or at the hospital gone.  Although it didn't compare to the 30 day stay in the NICU with Kate, it was a loooonnnnggg week for our family.

Now the chaos can set in for real :)

The kids are excited to have mom and dad back and, with the return to school yesterday, settle back into a routine of sorts.  All the kids were asleep by 9 last night and it was wonderfully peaceful to know they were all snug in their beds while B and I sat up chatting and relaxing in front of the TV.  It was those moments I had been craving!


Now begins the next steps in our journey.

We are thrilled to be home, but the oxygen tank situation is a bit of a hassle.  We are going to do some reorganizing today so that he can be in his crib tonight and I might possibly in my own bed (although it will be a mere hour at a time, probably.). 

I know it will all get worked out, hopefully sooner than later.


SO happy to just be HOME!

Wednesday, January 2, 2013

The roller coaster day :)

I often wonder about coincidences. But it seems so many things in my life have come full circle and I have later been able to put the pieces together to see the big picture.

This week, I am seeing some of the purpose of our experiences with Kate in the NICU so many years ago. As hard as it was, we gained a lot of knowledge about all this baby stuff. And it has surprisingly come back to us quickly. That has been huge when dealing with all this. We can ask better questions and our learning curve hasn't been as steep.

The day has been more like the NICU days we had with Kate.

Up and Down.

He had a great night with eating and such. They took out his feeding tube!!! They also tried going without the oxygen again. He ate really well and was keeping up his SATs, so we were hopeful he may not need the oxygen.

Then they did his carseat test.

Before kiddos leave the NICU, they must be able to be in their carseat for an hour without dropping their SATs.. Owen's pulse ox dropped several time in the first 20 minutes.

Then while he was sleeping later, they dropped again when he was in a deep sleep. It took some prodding to get it back up.

These two events this morning mean that he is just not quite ready to be off the oxygen yet.

So...

We will get to take him home tomorrow, but he will be on oxygen. We are not sure what this all entails yet, but we are THRILLED that we can have him home with us.

Then the real chaos begins:). Here is a pic I took when he was tubeless for a bit this morning!

Tuesday, January 1, 2013

A REALLY happy new year!!

So far, 2013 is a kick a$$ year! Pardon my language, but I think you may just agree in a moment.

I went home a bit early last night to spend some time with the kids and get some rest. It was a great decision as Colton almost acknowledged me for 10 minutes and snuggled me. I got to ring in 11:00 pm new year with miss Kate and I got some things organized. A productive evening indeed!

When I got to the hospital this morning I was pleasantly surprised to see Owen in a crib!! That means he is keeping up his temperature and no longer in need of the warmer. Another step closer to home!

He did a great job with bottles last night and has done great this morning too. He is getting closer to ad lib feedings, which mean he gets to eat when he wants, what he wants. Another step closer to home!

AND IT GETS EVEN BETTER!!!!

When the docs rounded, he took off his oxygen to see how he handled it. His pulse ox stats went a bit lower than he liked, so he still needs the oxygen support a bit longer to help his pulmonary hypertension. They turned it down pretty low, .1 flow, and he is doing great still! They said it could take a week or 2 for this to remedy itself, which can be related to the DS, but that was NO REASON to keep him here. So...

It looks like as long as he keeps maintaining everything else, he could come home in a day or two on oxygen!!! This would be such a great blessing for our family to be together. Being that today is a holiday, the home health care is not available to hook us up with the oxygen support until at least tomorrow, so we pray that we get the ok tomorrow and get to bring him home tomorrow night or Thursday. YAY!!!

As I sit and type this, my emotions are finally begin to take more hold. You know how when faced with something you sometimes just push through and then it hits you?? Today is that day.

I look at Owen and think back over the journey since his diagnosis and just want to drop to my knees at all the good news we have received. There could have been so much that clouded his arrival. There could have been ago many issues that have arisen.

Could is my new dirty word.

I knew this adventure would be a great learning experience for me and I am realizing this might be the greatest gift to date: I need to worry less and trust more.

I have had reminders to do this for years from those close to me (that may even live with and be married to me) for years, but I think it must be like anything else, until you recognize it yourself, you cannot do anything about it.

My name is Jen and I am a worrier.

I worry about things that I have control over. I worry about things I have no control over. I worry about things that could happen. I worry about things that may never happen, or even be possible.

I *think* that could possibly be stealing some of the joy out of my life. (duh, ya think?)

I do not like resolutions. I never keep them. But this may be different this year. It is more high stakes than any other resolution AND it could positively impact those most important to me.

I will live in the moment and prepare for what I need to prepare for, but I will do so in a realistic manner. I will not allow things to consume me. I will live for the joy. I will trust that the plan for me and my family is in good hands. I will keep perspective.

Yikes. That last one is a bit dangerous. I will need help with that. I am sure someone at home will be happy to hear that they are getting permission to hold me accountable to that one for myself.

2013 will be a powerful year for our family and I can't wait for us all to be together in our little house and start living it together. Praying that will be sooner than later!

Many thanks to those who have offered kind words and support over this time. All of the people in my life that I thought I could count on have proved themselves and more. We are overcome with the love and support and I hope to be able to repay favors and kindness soon.

I know we are just embarking on this next part of the journey and it will not always be easy, but I will keep my eye on the ball, perspective on reality and hope and faith that the plan set before us is well worth the journey and our blessings will continue to be great.

Love to you all and best wishes for an amazing 2013!