happy easter.

Happy Easter to you and your family!  It’s been a great day.  We’ve gotten to celebrate that our Savior is alive– He is not dead! — at church this morning and then with our families today.  This Easter has been particularly meaningful to me.  Each one should be, but this year it hits me in a way that has whole new meaning.  I’m thankful that I have known for a long time that because Jesus died on the cross, rose from the dead, and because He lives, I have life.  Through nothing of my own, I am saved.  Because the grave could not hold Him and His power, He lives today.  I am more thankful for that now than I ever have been.  I’m more in need of His grace every.single.day. than I ever have been.  Without Him in my life, I don’ t know how I would face one of my days.  Truth be told, there have been many times in my life where I’ve sadly realized that I didn’t think that way.  That I thought I was doing life okay on my own.  I didn’t know the desperation that it was to need Him.  Desperately, deeply, whole-heartedly need Him.  This Easter, without a doubt in my bones, I NEED Him.  I need His love, His grace, His power.  I need that He is risen.

 

Several weeks ago I was having a wrestling conversation with God.  How it hurt to lose my son.  How it hurt to know my baby was going to die.  How was I supposed to live this journey knowing what was coming down the road?  And He gently reminded me that He knows everything I am feeling.  He watched His son die.  He knew His son would die.  Jesus walked His life, His entire journey knowing what would lie ahead of Him – the horrendus death He would face to save us, the ones who really deserved that death.  And I felt reassured, I felt not alone.  And then I felt sad again because I started thinking about how God got to see His son again, how they are together.  And again, He gently reminded me that I too, will get to see my son again.  I will be reunited with Gabriel in heaven one day.  Because Jesus died and rose again.  And it was in that moment that I was so thankful for what the Lord has done for us.  I realized that Easter will never be the same to me again.  And that God giving us eternal life through the death and resurrection of Jesus Christ, is truly the greatest gift we could ever be given.  And it blesses me in more ways than I ever knew.

 

So dear friends, my prayer for you on this day is that you know the Lord.  That you know His goodness, His heart, His love for us.  I pray that you bask in that today and in the days to come.  Happy Easter!

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2 months.

My due date is 2 months away.  Two months from today will be May 26th — my due date with Gabriel, what was my due date with Jack, and is my birthday.  Two months from today I will be another year older, Jack will be 2, and we will have [most likely] had another baby.  It’s exciting and it’s scary.  Truthfully, the fear of the unknown hangs heavy sometimes.  The unknown is heavy, even without any fear associated with it.

 

31.2 weeks

 

 

The part that scares me is knowing how fast the rest of this pregnancy will go.  We’ve known that Gabriel has Trisomy 18 for 11 weeks now, and I can hardly believe that.  The past 11 weeks have gone by so so quickly, and that makes me nervous for the speed of time ahead of us.  While it’s easy to get caught up in that and let fear sit and dwell, I have to remember the opportunity I’ve been given.  I’ve been given a gift of knowing time is finite.  I’ve been granted eyes to truly see and appreciate this baby for all he is — a creation from our Father in full and beautiful form right now, and for that I will celebrate him and appreciate him EACH day.  We are celebrating with him now, appreciating his personality, and every day that we are granted with him.  So while it’s very sobering to realize we are approaching the final stretch in pregnancy, I am full aware that life is here with us today and I will choose to live in that.

 

 

So teach us to number our days

that we may get a heart of wisdom. 

Psalm 90:12 

31 weeks.

Celebrating 31 weeks!  Baby Gabriel is 31 weeks, and each one is a miracle.  So thankful to have him, know him, and we so look forward to meeting him in many weeks.

 

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I celebrated 31 weeks yesterday with an ice cream cone.  Classic cake cone — Tommy thinks my choice was weird.  He says waffle cone all the way.

 

 

I hope it is warmer and sunnier where you are today than it is here.  Snow does not spell spring to me, but apparently it’s happening all over the country.  Except for all of those who’ve vacated the state for sunny Florida for spring break.  I’m super jealous at every one of those pictures that pops up on facebook of someone on the beach.

 

Happy Monday!!

the weight of fluid.

Since about 20 weeks I’ve had a worry in the back of my mind with regards to my amniotic fluid levels.  When we asked about the possibilities of what could happen in the pregnancy after we found out it was T18, one of the things they mentioned was a possible build up of amniotic fluid.  They explained that babies with chromosomal abnormalities often have trouble with swallowing, which begins in utero, so they are unable to swallow and process the fluid like a baby with no issues would.  Therefore, the fluid builds up.  This is problematic because it increases the risks of some things, including preterm labor.

 

As the weeks have passed on, I have had fluid building up.  And I find it very bothersome.  I think on some level I feel like it’s a way that I’m failing.  Even though I know it has nothing to do with me, I kind of feel like I should be better.  I’m surprised by the things that really bother me — Gabriel’s low weight and the excess amniotic fluid.  They’re things that are to be expected with a baby who has trisomy 18.  Tommy reminds me that it’s ok, it’s not any worse because of these things.  But I think for me, it’s just concrete evidence of the T18.  It’s one thing to have a diagnosis.  It’s one thing to read a lab report.  But for some reason, it’s the weight and the fluid that make me realize that his little body just isn’t working as it should.

 

At my last appointment, they measured fluid and it measured at 28.  The ultrasound tech told me that average fluid levels for 30 weeks are 14-16.  Half of where I am.  In fact, the first tech measured 28 and then asked the second tech to measure.  The second tech asked her what she got and when she said 28, the second tech said “28???!!  Yes, I’ll double check.”  You never want to hear that kind of shock.

 

I’ve not talked much about the physical stuff of pregnancy because truly, it’s not a big deal, and I’m happy to have every side effect I’ve had because it means I’ve gotten to have Gabriel.  But it’s not been an easy road.  I have a ridiculously large collection of prescriptions and pills I take.  I’m thankful for the balance of medicine because it helps me to keep my food down, be healthier, and try to gain more weight.  So while I may be a walking pill box, I’m all good there.  But lately, within the last month, the presence of the extra fluid has really started weighing me down.  I kept trying to remember if it was a normal pregnancy thing, to be so uncomfortable, but I couldn’t remember feeling that way with Jack.  I’ve come to realize that the heaviness I feel and the abdominal pain, is most likely from the extra fluid.  And it’s just uncomfortable.  Again, I wouldn’t trade it if trading it meant not having our Gabriel.  It’s all part of the process.

 

But as the weight, both physically and emotionally, of it has been setting on me heavy lately, I’ve come to realize that it’s really a deeper heart issue.  It’s more about me being consumed by it, lacking in faith and trust.  So what if I have more fluid?  That doesn’t mean there won’t still be a miracle.  It doesn’t mean that anything will be worse.  It may mean that I have to go slower and I don’t get to do “all the things” I want to do, but that’s no big deal.  Maybe that’s a blessing in and of itself.

 

So I’m meditating on the verse below.  Remembering that my focus needs to be on God and not on myself.  Remembering that I trust Him.  Remembering that He is good.  Always.  Will you pray that we are able to do those things?  Pray for our hearts as well as Gabriel, and me, physically.  Thank you!

 

 

You keep him in perfect peace whose mind is stayed on you,

because he trusts in you. 

Isaiah 26:3 

 

the fisheeees.

Jack loves fish.  Or as he refers to them — fisheeees.  We had been wanting to take him to the aquarium, so when my mom mentioned that we should go, we got the adventure going.  And you know now I count fun things we do as “Gabriel’s firsts” too, so Jack and Gabriel got to visit the aquarium for the first time.  It might have been one of Jack’s greatest days.  He walked around looking at cool fish for a couple of hours with some of his favorite people.

 

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Lesson learned — if you can’t find Tommy, look for the control room.

 

 

 

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And the valves and stuff.  He’ll be there.

 

 

 

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I love this one.  I ordered it blown up to put in Jack’s room.  He’ll love it.

 

 

 

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He just wanted to chill in this space.  You can see all of us just watching him in the reflection.  Happy kid.  Oh, and I should mention that he did start the day with matching clothes, but had peed through his pants by the time we got to the aquarium.  Probably thanks to the 20 ounces of orange juice he had on the way up.  You gotta do what you gotta do on a long car ride.

 

 

 

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Jack with my brother, mom, and sister.  We were missing Pops on this trip and Jack asked about him a lot.  Work just gets in the way of fun.  That’s what I’m always telling Tommy.

 

 

 

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Family picture.

 

 

 

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The penguins were a big hit with Jack Jack.  They seemed to like him, too.  They kind of gravitated towards him.

 

 

 

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This turned out blurry and not great, but it was actually a pretty backdrop at the aquarium and you can really see how big I’m getting.

 

 

 

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After the aquarium we went to the Apple Barn, which is probably one of my favorite places ever.  Solely for the purpose of apple dumplings and apple julep.  I seriously think next time I will have a meal of just those things.  I don’t care about the other food.

 

 

We had a great trip, missed a nap, but it was totally worth it.  Jack’s been talking about seeing the fisheees ever since.  It’s really fun to watch him truly enjoy something.  1

rainy monday.

Yesterday was Trisomy 18 Awareness Day.  I put that all over my social media pages and wrote about our boy Gabriel here.  I had been anticipating the day for a little while, excited to share about our baby.  But the day turned hard on me, and it ended up being a pretty rough day.  I don’t think that was in connection to it being T18 awareness day, at all.  Granted, kind words and actions about Gabriel from sweet people in our lives did bring on many tears.  But those were happy tears.

 

I started the day off emotional from a dream I had the night before.  I’ve had several dreams about him dying, but this was my first one about him living and us getting to spend time with him.  It was awesome.  But definitely set me on a more emotional page for the day.  Then I had a doctor’s appointment, and it was long and more eventful than I’d hoped.  I learned I have a bacterial infection, so I started an antibiotic.  There was also some concern about labor starting soon, which absolutely terrified me.  We’ve known for a long time now that we could lose him at any time, but now that we are getting closer to the end of pregnancy I am realizing the reality of that.  And I’m not ready.  And yesterday I was a mess from that.  Good news is that the test they did says I’m not likely to go into labor in the next 2 weeks.  And I had an ultrasound to look at some stuff, so I got to unexpectedly see my boy on the screen again.  That’s always a treat.  Unfortunately, I’m still high on amniotic fluid.  In fact, just a little more than I was 2 weeks ago, but a lot more than normal.  So for the first time, when she measured my belly I measured right on.  I’ve been measuring consistently 2 weeks behind.  Unfortunately, that’s probably due to the accumulation of too much fluid, rather than a lot of growth from baby Gaby.  I am still going to hope he is gaining a good amount of weight, but the reality is that we know there’s a lot of fluid in there.

 

 

It was raining again yesterday.  It started before lunch and rained hard the rest of the day.  There was a lot of thunder and lightning, too.  I think it rains every single time I go to the doctor.  Again, I find it only fitting.  As I sat in my car leaving the doctor’s office, the raindrops fell as heavily on my windshield as the tears did on my cheeks.  I almost lost it getting back out to my car over Gabriel’s pictures from the ultrasound.  I didn’t have an umbrella with me.  I had my rain jacket, but it’s not big enough these days to cover too much and I couldn’t bear the thought of his pictures getting ruined by the rain.  They’re all I have.  So I stood there at the office building door, trying to gently fold and cram them inside my jacket, tears streaming down my face, while others walked past me so happy, carrying their pictures, too, but carrying on with life as normal.  I made it to the car.  The pictures are fine.  And will be hung up along with all the rest.

 

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So I left there and ran a few errands before grabbing my sweet Jack Jack.  Including my current favorite lunch…

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dietitian fail.  but so good.

 

 

Today is a new day.  Today I am going to cling to hope.  Hope that we’ll be ok.  Hope that we’ll get to spend some awesome time with Gabriel.  Hope that labor isn’t just around the corner.  And on that note, could I ask for you to pray for a few specifics for us?  Would you pray that the problems I’ve been having are from the infection and that they’ll clear up quickly.  While I don’t anticipate going a full 40 weeks, I’m not ready to have this boy yet, so please pray that labor does not start up in the next several weeks.  Would you continue to pray that Gabriel gains an impressive amount of weight?  And that the fluid levels do not continue to build up.  Thank you all for loving on us.  Thank you for praying for us.  We treasure you all.

trisomy 18 awareness day.

Today, March 18th, is National Trisomy 18 Awareness Day.  The date is intentional — the 3rd month of the year, the 18th day — for 3  #18 chromosomes.  A year ago, even 3 months ago, I had no idea this day or syndrome existed.  Today, T18 has been on my mind all day long.  It is most days, but today really really so.  I found out in the beginning of March that this awareness day was coming up.  So for the past 2 weeks I’ve been thinking about what I could do to increase awareness.  Paint a bilboard on I-40 so everyone passing through Knoxville sees it?  A little far fetched.  Bake cupcakes and take them to Jack’s school?  Great idea, except he’s not even 2.  I’m pretty sure all the parents and teachers would hate me for that.  Plus, not sure how it accomplishes awareness.  T-shirts?  Some kind of t-shirt design.  And that probably would have been good, but there was no way I could get that together in a week and a half.

 

 trisomy18awarenessvia 

 

 

So as yesterday was winding down I was discouraged but accepting that I had no good ideas for spreading awareness.  So I resolved to do only what I can this year.  My scope may be small, but I decided to share with any I could around me.  So I told the nurses and doctors at my perinatal office “happy trisomy 18 awareness day”.  I spread the word on my social media accounts — sharing on facebook, twitter, and instagram about what today was and who I’m proud to speak up for today.  And so now I share here.  Today I am proud, so so proud to speak up for my son, my baby boy, Gabriel Patrick Morgan.  I will spend all my days fighting for him, spreading awareness, sharing his story.  Always.

 

 

And because today should be all about him, I want to share with you a little about our baby boy.  Here’s what we know about him so far.

 

He is a fighter! 

  • When we found out about all of the issues he has when he was 20 weeks, the genetic counselor said she was surprised he’d made it that far.  Today, I write this 30 weeks pregnant!
  • He has a severe heart defect [one that the pediatric cardiologist ranked as an 8 out of 10 with a 10 being irreparable] yet his heartbeat is always strong and perfect.
  • Despite a faulty heart and a brain that isn’t properly formed, he is so active!  It’s hard to remember, but I think I can safely say that he is much more active than Jack was when I was pregnant with him, and Jack was active.  At the last ultrasound we had, the tech said that he was the fastest baby she’d ever seen.
  • He continues to be a miracle baby and defy the odds every day.

 

 

He is a cuddler 

  • The very first ultrasound we had of Jack [at about 8 weeks], he looked like a free-floating gummy bear.  He was Mr. Independent.  The very first ultrasound picture we have of Gabriel, he is nestled in so tightly that you can barely differentiate him from my body.  We knew he’d be a snuggler from the get-go, and we’ve been very excited about that!

 

 

He responds to us 

  • When Tommy or I rub my belly, Gabriel moves in response to it.  He knows it’s us, and he is interacting with us already.

 

 

He loves buffalo wings 

  • His favorite food.  He goes crazy after I eat wings.  Like turning flips, crazy, crazy.  It’s fun.

 

 

He keeps late hours  

  • He is always moving around 10 – 11 pm.  And he regularly wakes me up during the night with his movements.  It’s the only time I actually like being woken up.

 

 

He always reassures me 

  • Whenever I get nervous that he isn’t doing well or when I’ve had a bad day, he seems to be most active.  It’s amazing how it really does time out to when I need it most.  He is going to be an encourager for our family, I know it.  Actually, he already is.

 

 

He brings out the best in me and Tommy and makes us want to be better parents and people 

  • We are so proud of him.  We’re proud to be his parents.  We feel privileged to know him.  I never really before understood how you could form such a deep bond with a baby who you hadn’t held or laid eyes on.  Gabriel has changed that in me.  I am crazy about him, he has my heart.  Tommy and I talk often about how great Gabriel is and how we just feel so blessed to know him and be his parents.  We’re crazy honored God chose us for him.

 

 

He is adorable  — we know that but can also tell from the ultrasound pictures 

 

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No matter what genetic defects he has, he is still made perfectly in God’s image.  Perfectly. 

  • For you formed my inward parts; you knitted me together in my mother’s womb.  I praise you, for I am fearfully and wonderfully made.  Wonderful are your works; my soul knows it very well.  My frame was not hidden from you, when I was being made in secret, intricately woven in the depths of the earth.  Your eyes saw my unformed substance; in your book were written, every one of them, the days that were formed for me, when as yet there was none of them.                                            Psalm 139:13-16 

 

 

 

So today, and every day, we honor our sweet baby Gaby.

 

why i canceled my heart appointment.

Yesterday, March 14th was my follow-up pediatric cardiology appointment at Children’s Hospital.  It was a date we had scheduled upon leaving our initial appointment with them more than six weeks ago.  It’s often easier to see certain parts of the heart anatomy as the baby gets bigger, and the cardiologist wanted to make sure that everything still looked the same.  Same thing as we’re used to by now with Gabriel — things aren’t going to look any better, medically-speaking, but they could look worse.

 

So at 1 o’clock yesterday afternoon, instead of sitting in the waiting room for my appointment, I was sitting in the parking lot at Chick-fil-a.  We didn’t go.

 

One week ago I called to canceled the appointment.  The woman who does the scheduling was confused and asked me to hold while she got someone else.  The nurse who got on the phone asked if I wanted to reschedule.  I told her no.  Then I simply told her that our baby has a fatal genetic syndrome and we had decided not to come to the follow-up appointment.  As quickly as I’d finished that sentence she’d said “Ok” and hung up the phone.  Maybe she was really busy…  but I doubt that was the reason.  It doesn’t matter.  We’re learning through this that it’s up to us.  It’s all up to us.

 

People have been really surprised at the options or choices we have.  How much/how little care we want.  Birth choices… up to us.  Gabriel’s care choices… up to us.  Seeing specialists… up to us.  I think it’s because we have great doctors.  Fabulous OBs taking care of us who allow us, actually encourage us, to make these decisions.

 

So Tommy and I scheduled the follow-up appointment with the pediatric cardiologist back in January.  At that time I really wasn’t sure that we would make it to March.  I was doubtful that we would still be able to look at Gabriel’s heart in March.  But as the weeks went on, and I’ve been encouraged and increasingly hopeful in the Lord, I knew we’d get to see this appointment.  We thought about it off and on, and as the date of it approached sat down to talk about it.  We found we were both on the same page — not to go.  We’re at peace with Gabriel’s sydnrome.  Do I like it?  No.  But it’s not going to change by going to another appointment.  I needed that first appointment with the cardiologist.  Needed to know how bad his heart was and if it would keep him from having a fighting chance at life.  But during that appointment my heart changed.  I realized the uncertainty of what we’re dealing with and no doctor, no specialist, no surgeon could fix our Gabriel.

 

So yesterday, instead of spending my entire afternoon laying on a table and talking to a doctor we’ve met once, I spent my afternoon eating lunch with my sweet Jack and some sweet friends.  Then I laid on the couch, enjoyed Gabriel’s movements, and took a nap.  And Tommy worked so that he could spend his days off with Gabriel once he arrives, rather than at an appointment before-hand.  Just what my heart needed.  And I’m going to guess, Gabriel’s, too.  For the work of the Lord is far greater than what any cardiologist could do for my baby.

 

 

a normal day.

People often ask how we’re doing and what we’re doing with the question of wondering what our days look like now.  How do we do each day, what do we do each day while we’re in the thick of this.  And I remember wondering that many weeks ago myself.  Wondering how we would live each day while waiting to see what happens with Gabriel.  I’ll be the first to tell you that I stink at waiting.  I’m not patient.  I’ve never been.  I do think God is molding that in me some now.  Because I truly am learning to be thankful for each day.  I do find myself wondering a lot what will happen, but much more than that I find myself really counting this time with Gabriel.  So while we are waiting for his arrival, and we are very excited to meet him, we aren’t only waiting right now.  We are enjoying our days and not just passing them.

 

So our life looks pretty normal right now.  Here are some glimpses…

 

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Going to the zoo.

 

 

 

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Thinking about Baby Gaby and praying for him a lot.

 

 

 

 

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Coloring.

 

 

 

 

 

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Practicing using those utensils.

 

 

 

 

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Waiting for spring!