update.

Thank you so much for praying for us today as we had a couple of important appointments.  It meant so much to us knowing that we were all being lifted up in prayer today.  And we are happy to share that things went really well.  We are so thankful that God blessed us with a smooth afternoon of appointments.  Overall I’d say the day was encouraging.  Like we knew going into today, we didn’t learn any information that changes anything.  But overall, they were positive meetings.

 

Today we went to Children’s Hospital and met with a neonatal intensive care unit [NICU] social worker.  She had arranged for us to meet with one of the neonatologists there to talk about Gabriel, play out different scenarios, and ask a bunch of questions.  It was very helpful.

 

The neonatologist was very kind.  He told us multiple times how sorry he was that this was happening.  He talked with us for quite awhile answering our questions.  We found the appointment really reassuring.  He fully agreed with all of our plans and points of view, so that was encouraging to us.  We discussed a whole range of things including what our birth plan will look like, comfort care measures, oxygen, feeding tubes, respirators, NICU stays, going home, stillbirth, and medical professionals to be present at the birth.  Oh and we talked about Jack, too.  He gave us some great insight for helping Jack handle things that we just hadn’t even thought about.  So we left that meeting very encouraged.

 

Next was our appointment with the pediatric cardiologist.  We had a fetal echocardiogram which took about an hour.  It was really fun to watch Gabriel on the screen again.  I tend to get really tired laying there for a long time in the exact same position, but I kept trying to remind myself that it was an opportunity to see Gabriel and that makes it awesome.  He was really active, so it was fun to see him doing all kinds of moves on the screen!  So thankful for his activeness.  Also thankful that the estimated weight they got for him was one pound, one ounce!

 

After the echo the cardiologist discussed Gabriel’s heart with us.  We learned that he has a 3-chambered heart, rather than a normal 4-chambered heart.  He doesn’t have a left ventricle.  His heart defect is severe, but according to the cardiologist, he can most likely live with it for a little while.  Tommy and I were afraid he would tell us that it required immediate surgery upon birth or he would die, so we  were really encouraged to hear that was not the case.  While there are a few different ways it could go with the way Gabriel’s heart is structured, the cardiologist thinks the most likely scenario is that eventually Gabriel will go into congestive heart failure.  His heart would pump too much blood and oxygen into his lungs which would lead to congestive heart failure.  And consequently death.

Now this is all ignoring the fact that Gabriel has trisomy 18.  If it was just the heart and nothing else, we would pursue some surgical interventions [probably 3 in his first year-2 years of life] to help his heart.  It could never be healed or cured because you can’t turn a 3 chambered heart into a 4 chambered one, but they could do things to help his heart operate well and get the right blood to the right places.  But considering that with trisomy 18, there is no predictability to what will be the cause of death or when, that is our bigger issue.  Not the severe heart defect.  So it is likely, although there are never guarantees, that it will not be Gabriel’s heart that causes his death, but rather another aspect of the T18.  I don’t know why, but I find that encouraging.  Although it pains every natural thought in this type A, planning personality of mine to say, I think I am learning to appreciate the unpredictable more.  Who am I?

 

I asked the cardiologist how severe this heart defect is.  Because we had been told is was very severe.  The things we’ve read online say it’s severe.  And when he first came into the room with us today, he said it was severe.  But then he started talking about how it wasn’t necessarily immediate.  I had a hard time understanding how severe didn’t = immediate danger.  Good thing I’m not a cardiologist.  But anyway, he said that on a scale of 1 – 10 with 10 being the most severe and inoperable heart defect, he would rate this an 8.  I like numbers.  I can wrap my brain around numbers.  Can all of our information be presented in numbers?  Maybe I’ll start asking that.

 

I think one of the reasons I was so encouraged today was because I heard 2 physicians talking about bringing our baby home.  Not in a definitive sense of saying that we would, but in hypothetical situations.  Even just to hear them mention that brought hope to my weary soul.  The neonatolgist said something along the lines of if Gabriel was still living after a couple of days, we’d put a feeding tube in him [if necessary] and learn what to do at home.  Oh the thought of that made me so happy.  I can’t even imagine the sheer joy of walking out the doors of that hospital with our baby in our arms.  Can’t.even.imagine.  So that also added a little spark to the fire to get cracking on Gabriel’s nursery.  The boy can’t come home to an incomplete room.  Not that he’ll spend too much time in there anyway– I’m fairly certain we’ll never set him down in his life here.

 

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So after a lot of words about today, what we learned in short…

–  We’ll keep going down the path we have been by continuing to gather information, be prayerful over it, and talk talk talk about all of our options and thoughts

–  We felt reassured in our decision to go the comfort care route for Gabriel after he is born

–  We have to be so very specific in our birth plan for baby Gabriel that it makes a type A person look laid back

 

 

Thank you again for your support and prayers today [and always!].  I was reminded yesterday of the power of taking requests before our God, and we’re so honored that you do that for us.

 

much love,

 

lauren & tommy

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prayer request.

Dear friends,

Just wanted to drop in and ask for your prayers for all of us tomorrow.  We have a big day of appointments.  Tommy and I will be meeting with the pediatric cardiologist to learn more about Gabriel’s heart.  Then we will also meet with a NICU team at Children’s Hospital to learn more about what they do there.  We will also have the opportunity to sit with a neonatologist to ask all of our questions.

 

While we never know for certain what we will learn, we don’t expect to learn any information tomorrow that will change anything.  These appointments are very good for us, though, because they will give us the knowledge we need to make the best decisions we possibly can for our little Gabriel when he arrives this spring.

 

So would you please pray for our day of appointments tomorrow?  That things will go smoothly.  That we will be receptive to the information we learn. And that we will be wise knowing and remembering the important questions to ask and issues to address with these specialists.

 

Thank you so much for praying for us.  Thank you for loving our family!

 

 

 

thankful.

Today is beautiful.  It’s warm and sunny and perfect.  It’s the kind of day that sneaks in in January and makes you want to drop everything and just be in the day.  I’m thankful for that.  Jack is too.  The boy needs to be outside and January’s weather has not allowed him to be an outside boy.

 

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I’m thankful for this break from the normal January weather.  I’m thankful that today has been a good day.  I’m thankful that as I sit on my couch this afternoon eating a snack, what I think is that the worst thing that’s happened today is not having a grapefruit spoon to eat my grapefruit with.  I’m thankful for that.

 

Yesterday I was reminded that there is always hope for my little guy.  His heart is beating.  He is moving around.  He is with us.  I am thankful.

 

I pray you find things you are thankful for today.  For there are many.

 

And let the peace of Christ rule in your hearts, to which

indeed you were called in one body.  And be thankful.

Colossians 3:15 

 

 

what it is.

There are many daily revelations that come with having a baby with Trisomy 18.  Some of them are new, some of them are the same ones over and over that are just so hard to believe, that they hit hard and knock the breath out of me each time.  Like going to the grocery store.  Every time I have been since we found out Gabriel has T18, has been hard.  This morning I was picking out chicken when a family pulled their cart up beside me with a baby carrier and the tiniest little person in there.  I felt like I was going to throw up.  Even though that wasn’t the first time I’d realized I wouldn’t be able to take Gabriel to the grocery store, it still stung deeply.

 

Other things come in waves.  I see a friend talking about registering for their bundle of joy.  I get email updates from the Bump and Baby Center talking about which car seats and cribs are best.  And instead of us spending our evenings looking those things over, we are learning about pediatric cardiologists, methods of delivery, details on heart defects, fluid in the brain, and apnea, and talking about hospice care for our newborn.  It all stings.

 

Often times when I talk to people, I don’t know what to say.  I’m getting some rehearsed lines down.  We have a general spill that we give to people.  And the details and depth of it varies based on who we’re talking to and the situation.  But when I’m talking with someone who truly cares and wants to know, I tend to lose my words.  And I find myself just saying, “it is what it is”.  There aren’t explanations or reasonings that I’ll ever understand.  Sometimes I feel as if I’ve accepted it and others I’m lost and confused and unsure how it could be.  But I’m always thankful for Gabriel.  Every day.  I would rather have him and go through this journey than to not have him at all.  He is our son.  Always will be no matter what happens.  And that is what it is.

 

 

Be merciful to me, Lord, for I am in distress; 

my eyes grow weak with sorrow, my soul and body with grief. 

Psalm 31:9 

47,XY,+18.

These letters and numbers would have meant nothing to me a month ago.  Just randomness.  But when I was handed a sheet of paper yesterday with 47,XY,+18 on it, I knew exactly what it meant.  Our baby has 47 chromosomes, is a male, and the extra chromosome is on the 18th.  They’ve seen his cells, mapped out his chromosomes, and we have an official Trisomy 18 diagnosis.

 

It’s not surprising to us.  The genetic counselor and perinatologists were so certain after their findings on the ultrasounds.  They told us we wouldn’t know for sure until we had the amniocentesis results, but they were so certain, that we knew it would be the case.  It was just a matter of confirming it.

 

It’s now confirmed.  There’s no question about it.  And while I knew deep in my bones that he had this syndrome, it’s still harder than I thought it’d be to find out for sure.  Any hope we had that maybe Gabriel just had a pile of birth defects that could be repaired and dealt with is gone.  Any hope of it not being a trisomy, a worst case scenario, is gone.

 

Hear me say this though…  

Our hope isn’t gone.  Because we know the One, we have hope.  Hope that we will get through this.  Hope that He will use this for good.  Hope that He will sustain us  and Gabriel daily until the days He has written for us are done.

 

Know that we have hope.  But the honest truth is that it’s hard to feel that now.  Hope is there– it always is.  Truth doesn’t go away just because of hard times.  And God is hope is truth.  But sometimes it’s easy to truly say those words and others it’s hard.  They’re still true, but it’s hard.

 

We found this out on Thursday, and since then I’ve felt short on words.  I’m not really sure what I’m thinking or how I’m feeling.  I think I’m just deeply saddened.  We met with the genetic counselor and our perinatologist to go over everything.  We were there for 2 1/2 hours, just talking.  They really put it in our hands as to how we want to do everything.  We talked a lot about what the big things are that we need to make decisions on.  We talked about next steps and possibilities.  We asked a lot of questions and soaked in information from the wisest, and best doctor we could have.  He was so honest and truthful with us — he told me what he’d tell his daughters if it were them.  We’re thankful for him.  He makes this better for us.  It is such a blessing that he is a friend of our family’s.  Who would have ever known 15 years ago when we vacationed with their family, that he would later be taking care of my little family and delivering our special Gabriel.

 

So from here we will go see some specialists.  We’ll see the pediatric cardiologists, and neonatologists, and team at Children’s Hospital.  We’ll gather information, but it won’t change anything.  No one can fix our baby, but we need to know some things in order to make the best decisions for him.

 

I had been somewhat looking forward to getting to this point.  I think I thought that having a plan and meeting with these people would make things better.  Like we would have some control and be able to do some things.  But I realized immediately Thursday, that while we can and should talk to these physicians, it won’t change anything.

 

 

 

We are so thankful for so much love and support.  We are so thankful for prayers for Gabriel and us.  We are so very thankful for you.

 

missing him.

Tommy used to travel a lot for work at his old job.  And he would be gone for long periods of time, too.  It was just part of life as we knew it, and we got into a routine after awhile.  But every time before he would go away, the same thing would happen.  And after awhile I started to notice a pattern.  I would pick fights with him over stupid stuff.  Getting easily irritated and upset by things.  When I realized I was doing it, I realized that it was because I was worried about him leaving.  Then I would always realize that I missed him.  I missed him before he ever even left on his business trips.  He would be sitting right beside me on the couch in our home and I would miss him, just knowing that he was going to leave soon.  It never made any sense to me why I would feel that way while he was still with me.

I feel that way with Gabriel.  He’s right here with me now, and I miss him.  My heart aches in missing him and sometimes I just cry from that.  But it makes no sense because I haven’t lost him.  He’s here.  He hasn’t left yet.  But they tell me he will, and the thought of that day coming, makes me miss him.  I’m not picking any fights with him, but I can feel the angst in my heart.  And in a similar, but really very different, way to Tommy’s traveling days, I am dreading that day that lies ahead when he leaves us.

the world keeps spinning.

One of the things that I was shocked about and couldn’t get over when we first learned about Gabriel’s conditions was that the world goes on.  While our world had stopped, everyone else’s went on.  Things looked normal out my window.  Facebook continued to facebook away.  People even kept having babies and continuing on with their normal pregnancies.  Even in my own home, the dishes were still there, the kitchen still got dirty, and the laundry continued to pile up.  But yet I was at a standstill.

 

Now I’m getting back into the swing of things.  I didn’t see earlier how I ever would.  And I’m sure I’ll still have days where leaving the house or fixing dinner seems overwhelming.  But I think part of walking this journey is the continuing to live every day.  How could I ever have a “normal pregnancy” for the rest of our time with Gabriel if I never did anything normal?  This is all so different, but as life goes on I’m learning to adapt.  Learning how to be a mama to Jack, be a wife to Tommy, take care of our home, do all the things [or in reality just some of the things] while living each day focused on God with an intense love and passion for Gabriel.  Living every day life with intentionality.  I’ve never been very good at that, and now I see the extreme importance of it.

 

So as I worry about my sweet baby and wrestle with the uncertainty of it all, the words I’m remembering today come from the Lord.

 

The Lord will fight for you, and you need only to be still. 

Exodus 14:14 

Thank you for being here and reading.  Thank you for your prayers!!

two weeks later.

What a difference two weeks makes.  It was two weeks ago today that we learned something was wrong with our precious little baby.  How could that have only been two weeks ago?  It feels like it was a lifetime ago.  I feel like we’ve been walking this journey for awhile, yet I hope and pray that we are just at the very beginning with many, many weeks ahead with Gabriel.

 

Today was a special day for us.  We got to see Gabriel for awhile when we had a 3D ultrasound done.  This was a “fun day” — no diagnostics, no discussing of decisions, no medical terminology that is way over our heads.  Just Tommy, me, and baby Gabriel.  And the sonographer, too, of course, but I kind of forget about her and just imagine it as time two desperate parents got with their baby.

 

We got some great pictures of our baby boy.  He is truly beautiful.  He’s a little guy for his gestational age, which is to be expected, I suppose.  But we just got to look at his little face a lot.  We also got to see some really cool images of his hands, which was important to me.  His hands are one of the markers of Trisomy 18.  His hands are clenched into fists and his fingers are crossed.  At first we really didn’t understand this, thinking that he would just open his hands up when he felt like it.  We later realized that his hands are formed that way; it is the way he is made.  So it was precious to me to get a close up, 3D view of his left hand, to be able to see the way his fingers were crossed.  To see what they’ve been telling us for myself.

 

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gabriel22wks

 

 

 

 

Our little one really likes to have his hands and his arms up by his face.  We’ve seen that several times now.  They tell me it’s the syndrome, but I say he’s a fighter.

 

We had the same sonographer today who we had 2 weeks ago.  The one who first found problems with Gabriel.  I had told Tommy before we got there that I really hoped it wasn’t the same woman.  So when my name was called and I looked up and I saw her, I turned to Tommy and said “well, crap.”  Not that there’s anything wrong with this woman.  In fact, we learned a lot more about her today, and she is a wonderful person.  But I think I was nervous about the same place, same time, same person who broke bad news to us before — nothing personal about her.

 

But turns out, I am so thankful we saw her again.  She was so personal, so talkative, and so kind to us.  She really went the extra mile taking pictures for us and getting me information I asked for.  She told us what she believes God can do and said she’ll be praying for us.  It was actually good to hear her talk about what she was thinking two weeks ago.  She talked about how she wasn’t sure what to say but that she knew right away that there were serious issues.  That’s why she was quiet.  She’s never actually seen in a patient with the heart defect that Gabriel has.  She’s never seen a trisomy before either.  In all her years of practice.  She told us we were her first.  She said it was like all of the things you learn in school in case you ever see them but you never really do.  But with us, she did.  She said her friend, who’s also a sonographer, has never seen a heart defect like Gabriel’s either.  We had a lot to talk about.  It kind of felt like talking with a friend, and I am thankful for her.  I’m thankful that she took the time to find Gabriel’s hands so I could see them better, because she knew it was important to me.

 

When we were leaving the office, the women at the front wanted to see Gabriel’s pictures.  I felt like a proud mama, showing off pictures of my baby.  And that’s exactly what I am and exactly what I did.  I am so proud of Gabriel.  I’m proud of the image of God that he bears.  I’m proud of the way he’s making an impact.  I’m proud that he fights so hard.  I’m proud to be his mom.

 

We walked out the door and to the elevator and broke down.  He’s just so beautiful.  He looks perfect.  I miss him, and he’s still here.  I just want him.

 

Tommy and I went by the grocery store on our way home to Jack.  We had to quickly leave.  When we turned down one aisle we could just hear the cries of a baby — a newborn it sounded like.  I was thinking of the ache in my heart as I heard those sweet noises.  Tommy just leaned over to me and said “lucky”.  We grabbed what we needed and bolted to the checkout.  It’s hard to hear those things, see those things, knowing we likely won’t have that with Gabriel.

 

We’ve poured over Gabriel’s pictures from today.  Watched the DVD.  We love him so.  Today was a blessing to us in many ways.

 

Tommy and I laughed that our questions were probably very different from the questions she usually gets at 3D ultrasounds.  I imagine people usually ask for pictures of certain things, but instead of that I was asking if there was fluid building up around his heart, how big his ventricles were, and his growth and size.  Oh how our life has changed.

 

The only negative from the ultrasound was that I asked her to measure his ventricles in his brain.  I know it’s not nearly as precise or accurate as what they can and will do next time we’re at the high risk group, so I’m not getting upset about it, but it appears that there is more fluid in his brain than there was 2 weeks ago.  Not a good thing.  We should know more specifics this week or next week, as to whether that’s the case and what that means, but for now, I just ask will you please pray for this?

 

We are so thankful for all of your prayers!  So thankful!  It means more than we could ever say.

 

Here are our specific prayer requests:

–  Please pray that more fluid is not accumulating in Gabriel’s brain!  We are hopeful that it will not be worse than we saw 2 weeks ago.

 

–  Please pray for guidance and wisdom for us and our doctors as we learn more information this week.

 

–  Please pray for us as we learn how to handle this all with Jack.  He’s so perceptive and knows and understands far more than I thought he did.  I want to handle it well, and just because he’s young, doesn’t mean he doesn’t know.

 

 

 

Thank you for the love, support, comments, and prayers you give to my family.  We are grateful with all of our hearts.

snow day.

Thursday we got a bit of snow here — a lot by Knoxville standards.  I think we had a whopping inch or inch and a half at our house, and I was so thankful for it.  We had the best time getting out in it and playing.  It was a nice break… a change of pace.

 

This was not the first time Jack’s seen snow, but it’s been over a year since he has, so big difference this time.  Watching him play in the snow was so much fun.  It was like he was discovering a whole new aspect of life, and I loved getting to watch.  At first he was excited, but cautious as he took it in– which is totally his personality.  Before long he was running and yelling, wanting to play with all the big kids on the street.

 

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The round cheeks with the red nose… ohh it gets me.

 

 

 

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There was a lot of water from all the rain we’ve had.  As soon as Jack discovered these puddles, it was all fun splashing.  He couldn’t have cared less how wet and cold he was.  Boys are so fun!  Thankful I’m having another.

 

 

 

hope is in the air.

I know I have written about the rain several times.  I just cannot get over the connection between the weather and where our lives are now.  We found out that something was wrong with Gabriel 11 days ago.  It has rained for the past 8 days, and it rained the day after we learned the details of Gabriel’s health.  So nine out of the eleven days that we have known about our baby boy’s health and prognosis, the skies have opened and it has poured out.  We’ve had 8 inches of rain in 8 days.  That’s not just “crazy weather”.  I mean it is crazy weather, but I do believe that there is a connection between that crazy weather and the state of our hearts.  I can’t remember a time when it’s rained so hard for so long.

 

People will often times equate trials in life to rain.  There are many songs that talk about “bringing the rain”.  We’ve been soaking wet.  We’ve been drenched when we walk outside, cheeks tear-stained, and hearts heavy with sadness on the inside.  But today the rain has stopped.  Not this trial in our life, not the hard that is our new life, not the tears we cry, but the rain falling from the sky has stopped today.  I see sunshine and the promise that comes with it.  There is something about the sun, especially after a very hard rainfall, that brings hope.

 

I wrote a couple of days ago about how I had quickly lost hope.  And then I was so thankful for how quickly the Lord allowed me to see that was happening.  It’s funny because today I woke up and my devotional was about where our hope is.  One of my favorite bloggers posted about the hope of spring.  Yesterday I had great hope that we would see snow.  And as I looked up out my window yesterday afternoon, I saw it.  The snow that I so eagerly waited for was falling.  I had hoped with deep longing to see snow yesterday.  It may be a silly thing, compared to what else I hope for now, but it reminded me that God fulfills hope.  God shows up.  And as I looked up and saw the snow falling, I started to cry.  Partly because that’s what I do these days.  But mostly because God shows up.  And He showed me, He reminded me yesterday, with the gift of snowfall.

 

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Thank You God for snowfall.  Thank You for always showing up.  Thank You for signs of hope today through reminders from others, through Your creation, and through Your sunshine.