Baby

28.5 weeks – Update

We had our first ultrasound appointment to check on baby’s growth today.  In addition to that, I got to choke down a delicious glucose drink and get a shot in my rear.  It was a great morning.

There really isn’t too much to share about the ultrasound.  My placenta and amniotic fluid were looking good, and she is now three pounds!  She is measuring in the 64th percentile, so that is awesome.  Side note – I always had a negative association with growth charts and the word “percentile”.  When Eli was a baby, my peers would talk about what percentile their baby was in, like it was a way to brag about how gigantic they were, and Eli was always barely on the chart, if at all.  It always stung because I was trying so hard to get him to eat and grow.  Maybe I was just bitter, I don’t know.  As he has gotten older, I am not NEARLY as sensitive about the charts, or the fact that he is barely on them, since we are quite sure his short stature has to do with whatever he has going on, genetically.  (He is nine years old, and not even 48 inches tall.)  Anyway, back to today.  We had an  ultrasound tech we hadn’t seen before.  Like the other techs, she seemed surprised by the fact that the baby has Down syndrome, because she doesn’t show any text book signs.  But then, like the others, she followed that with, “there is only so much you can see on ultrasound”.  Which is true.  Eli proved that to us.

So, for now, we will just continue to have our routine visits with the midwives, and have another ultrasound in four weeks, then another four weeks after that….which seems like forever from now.  I have recently decided that I am pretty much over being pregnant.  Oh wait – What I meant to say was, “Being pregnant is so joyous and wonderful, and I have never felt so beautiful.  I wish it could last forever!!”  Never mind that popcorn falls out of my shirt and bra, when I go to change my clothes, because I was shamelessly pigging out earlier that day…Or that I have to rush to the bathroom, fearing that I am about to pee my pants, only to have an ounce of pee come out.  And who cares that I woke up in a cold sweat after having a nightmare that I went to Olive Garden, and they were out of bread sticks.  Big deal!  And really – who DOESN’T want to gain 30 pounds in 7 months?  Okay, okay.  All snarky remarks aside, being pregnant is also pretty amazing.  I do love watching my belly ripple like a water bed when she is moving around, and I do love feeling like I am already bonding with her.  I am also super thankful that we have more time to prepare for her arrival.  We are SO not ready.  haha

I will post baby updates as we have appointments, but they will be few and far between.  In the meantime, I will continue to bore you with chicken life and whatever else I feel like yapping about.  Speaking of chickens – Denise’s chicks are due to hatch sometime between tomorrow and Friday.  I am currently not feeling very confident in her, because she was jostling the eggs like crazy this afternoon, and she isn’t supposed to be doing that at this point.  We will see, I guess.  I REALLY hope she gets at least a couple babies out of this.  Stay tuned!

Opening Up

I recently did something that I didn’t anticipate doing… I shared my blog on social media.  I went back and forth on this, for a couple weeks, and finally decided to do it.  This was a big deal to me, because I am a fairly private person.  It’s not like I am secretive, or an introvert, I am just the type of person that doesn’t share a lot of details about my life, unless you are one of my close friends.  I don’t like a lot of attention, so I do my best to stay under the radar, especially on social media.  My rare Facebook posts are usually surface based pictures or something involving humor.  Allowing so many people into my life makes me uneasy, for whatever reason.  So why would I choose to blog, and spew such private details of my life to strangers, rather than just journal my thoughts?

I did it because I didn’t want to repeat history.  When Eli was born, I sort of shut myself out, for a couple years.  I was emotional, resentful, and unsure about where or how to fit in, and in being this way, I created an awkwardness in my life. I was in this whole new, scary world that I knew nothing about, and rather than put myself out there with people, I retracted.  I didn’t like that it seemed like people felt sorry for me, I couldn’t relate to other new moms, and I hated the fact that I cried so easily when people asked about him.  But it was all me.  I told myself that people felt sorry for me, that other mom’s didn’t get it, (because I hadn’t yet reached out to other mom’s of children with special needs), and I shouldn’t have been afraid to show my emotions.  I am happy to say that none of that lasted.  In time, I met some friends who had kids with disabilities and it opened up a whole new life for me.  I started opening up with old friends, and new, and really connecting.  I was finding myself again, and life seemed to get better and better.  I have experienced so much growth since Eli was a baby.  I know, now, that having a child with a disability doesn’t have to be scary or lonely.  I feel like, by putting our story out there, I can alleviate some of that awkwardness I felt before.  I can let everyone know that my family is okay, so they can be okay, too.  It won’t have to be a weird “thing” like … ‘whoa, they have two kids with special needs?  I wonder what that’s like?  They must be a mess.’  Etc.  It’s human nature to be curious, or assume, and I want everyone to be on the same page as us.  The more I keep things open, the easier it will be for us to continue our normal, happy life.  Now the truth is out!!  I am ultimately just super selfish. 🙂

So, I didn’t do it for the praise or attention.  That’s not me.  However, I really did appreciate everyone’s kind words and support.  Thank you for that.

FYI – My next post is going to be about my chickens, so you have that to look forward to.  I know, I know.  Now you are going to lose sleep due to anticipation, but I thought I would give you a heads up, since this blog is going to be all over the place.

Coming out of the Darkness

As I left off, the first days, post news, were sort of dark.  We cried a lot, both having our moments of feeling overwhelmed, scared, sad, etc.  Somehow, we managed to alternate with this so that when one was down, the other was there to offer words of encouragement.  This is one of the perks of already having gone through this.  We know how important it is to talk to each other about what we are thinking and feeling, and we both know how the other handles this sort of thing.  Each passing day seemed a little easier.  By Monday, (four days post news), we were still off, but with a lot less tears.  We were both in the same mind set – that we needed to see how things went on Wednesday, and then take it day by day from there.

Wednesday was going to be a big day for us.  Weeks before, we had scheduled a fetal echocardiogram at Children’s Hospital, just based on the fact that Eli had a heart defect.  We had decided, with the midwife, at my very first appointment, that it would be good to rule out any issues there, since Eli was still undiagnosed.  Then, during our conversation with Eli’s geneticist, (that we had after we got baby’s diagnosis), she said she would get us in to see the Maternal Fetal Medicine team at Children’s, as well.  They called me 20 minutes after we had hung up, and scheduled an ultrasound for a couple hours after the fetal echo.  (It’s nice to know the right people in these situations.)  There, we would have an intensive ultrasound, looking at baby in a lot more detail, with a specialist.   It would be a stressful day, but obviously something we needed to do.  There is a pretty broad spectrum with Down syndrome.  Some kids are fairly healthy, while others have a lot of medical issues, especially in the first few years of life.  These scans wouldn’t tell us everything to expect, but could potentially rule out some of the more major complications.

Wednesday morning finally came, and Josh and I were both a bundle of nerves.  I can’t speak for him, but I felt like I was resisting the urge to puke all morning.  I go to Children’s all the time with Eli.  As he has gotten older, it’s really become no big deal, but today was different.  Even walking in was different… the smells, the vibe, my blood pressure.  Our first appointment was with Cardiology.  I was very impressed at how quickly they got us back, and how little wait time there was to get started, (not the norm for a Children’s appointment).    The tech told us that she wouldn’t be able to tell us much, and we would have to wait for the doc to get information, but to ask questions as we pleased.  We didn’t.  We were silent the whole time, and towards the end, she commented on it.  Josh was hardly watching the screen – looking down a lot.  He explained that we had too much experience staring at medical screens, and how not really knowing what you are looking at can put you on edge.  I cried then.  I had already had a lot of flashbacks that morning, of when Eli was a newborn, and it all just came flooding out.   I thought of things that I hadn’t thought of for years.  Not that I was suppressing those memories, I just didn’t have a reason to go back to those days in my head. She finished up about 10 minutes later and said the doc would be in shortly.  Then she came back later to say the doc would be even longer.  Awesome – more waiting.

Finally the doc came in, and gave us the news we had been waiting to hear – they found no issues with baby’s heart.  She even went so far as to say that if it were her baby, she would be very happy with what she saw.  BUT, then she said that doesn’t mean that baby girl is TOTALLY in the clear.  There is potential for a couple things to happen once a baby is born, and there is also a chance that they missed a small hole, since they can only see so much in utero.  Even with her disclaimer, it was still very good news, and put us so much more at ease.  We understood that this wasn’t a 100% guarantee, but it’s what we wanted to hear.  I cried happy tears then, and so did Josh.  I wanted to give her a huge hug, but then I thought that might be weird, so I held back.

One appointment down, one to go.

After a delicious, nutritious lunch in Cafe Children’s, we headed up to appointment number two, with Maternal Fetal Medicine.  I thought I had seen all of Children’s Hospital at this point, but turns out there is this beautiful little wing on the 4th floor, for mother’s and medically complicated babies.  It was really nice…I would almost call it fancy.   We had a 35 minute wait this time.  It doesn’t sound like much time, but my nerves spiked again, even more so than before our first appointment.  Just as I was starting to get really anxious, we were called back.

The nurse that did our ultrasound was very nice, and much more chatty than the first tech.  I think she was more qualified to give her opinions of things as she went, but would then remind us that we would talk to the doc later.  She did a great job of pointing out some fun things, too, like the baby’s huge feet.  We got a good little chuckle out of that…they really were big.  She even grabbed them with her little hands, while we were watching her.  So, it definitely wasn’t gloomy like the first scan had been, and that was refreshing.  She wrapped things up, telling us that she didn’t see one thing that caused any concern.  There are a handful of markers that they check for, and our baby had none of those markers.  The bilateral EIF, that initially pulled the trigger on us deciding to do genetic testing, had even faded.  Well, the right side had…and when they only see one EIF, it’s not even considered a marker.  She asked me, before she left, if we would have ever decided to do the Verifi testing if they hadn’t seen that, and I told her no.  She thought that was super interesting because she didn’t feel like the bilateral EIF was even worth mentioning these days, (there is a lot of debate as to whether or not this should even be considered a soft marker).  It is pretty crazy how all of this worked out.  However, I am currently feeling grateful that we got the diagnosis ahead of time.  It was just such a shock and a blow when we had Eli, and got such scary news within an hour of him being born. It took away from the celebration part of the birth, and we ended up feeling a little robbed because of that.  At least this time we will feel more prepared, and so will our family and friends.

The doctor came in and we ended up having a very open, long conversation about things.  He said if he had done the scan, knowing nothing about us or the diagnosis, he would not have had any concerns.  He said that happens maybe 30%(ish) of the time – where a couple has a baby with Down syndrome, (not knowing before birth), and the professionals go back and look at ultrasound, and think – there is no way we could have known.  Everything looked so “normal”.  I told him that the midwife said we could do an amnio to be 100% certain the baby does have Down syndrome. (The test we had is 99% accurate – so we felt the amnio seemed silly, but I wanted his opinion.)  He was honest and said that if we were planning to terminate the pregnancy, based on the Down syndrome diagnosis, it would make sense to do the amnio.  Since that wasn’t the case for us, it didn’t seem necessary to take the risk.  (The risks are minimal, but pretty much all statistics mean nothing to me these days.)   We agreed with his logic, and stuck with our decision to not proceed with an amnio.  Though it is natural for your brain to go there, we are NOT in the frame of mind that this was a testing mistake.  She has Down syndrome, and that is okay.

We ended up leaving the doctor, deciding it would be fine for me to continue being seen by my regular office, as long as they felt comfortable with that, (and they do).  I will have ultrasounds every 4 weeks to keep track of baby’s growth.  This will start at 28 weeks, since that is around the time when they usually start to see a lag in growth, (if they see it at all).

So – what does all of this information mean?  At the risk of sounding negative, (which is not how I feel),  I want things to be clear for everyone.  This is all good news.  The fact that things are looking so good now is amazing, and it provided us with some relief in regard to some of our medical related fears.  But – they can only see so much at this point.  I should mention that Eli actually had an intensive ultrasound when I was around 7 months along, because he had an irregular heartbeat.  We saw a Maternal Fetal Medicine specialist at Lutheran, and she cleared him, saying everything was fine, when it wasn’t. There are a lot of things that can not be seen, and we can’t dismiss the possibility of any medical issues just because we got this good news.  There is also no way to tell us anything about her intellectual ability, if she will have major feeding issues, or whether or not she will have autism, in addition to Down syndrome.  That’s all stuff that we will find out later on, and deal with as it comes, but it’s still a little terrifying, if I am being honest.  Unknowns are always scary, but if there is one thing I have learned, having Eli, it’s that I can NOT use my energy focusing on the what if’s.  I have to take things one day at time, and try to focus on the good.  Save the fear for when you KNOW exactly what to fear, then work through it.  It all sounds so easy, right?  haha   It’s not.  Even as a veteran, I will have my freak out moments.  I am far from perfect.

These past couple weeks have been a real roller coaster, but Josh and I are currently in a pretty good place.  We won’t consistently be in that good place for the next few months, we will have our ups and downs, but one thing is for sure – this baby girl is going to be loved and celebrated, as all babies should be.  As mom, I am already feeling that love.  We are definitely going to need a lot of extra support in the coming months, but we don’t want pity.  This was not what we were expecting out of FINALLY deciding to have another baby, but we also weren’t expecting Eli, and he has turned out to be the light of our life.

Punched in the Life

I am sure you have heard it before, and maybe even said it yourself, when something bad happened.  When you got your heart broken.  When you got some news that changed your life.  When you suddenly had to face something that you didn’t think you could handle.

“…it felt like I got punched in the stomach.”

I have felt this feeling before…many times.  I felt a similar sensation two weeks ago, only it was much more intense.  This time it felt more like a punch in the life.  That may not make much sense to you, but it does to me, and that’s really the only way I can describe it.

Here is the story…

On January 3, 2006, my husband, Josh, and I had our first child – a baby boy.  We were young, and excited, and expecting a healthy baby, as most people do.  But that didn’t happen.  (To tell Eli’s whole story would probably take five blog posts – and maybe someday I will tell that story – but today I am just going to brief you on his life, to show you how it impacted us as a family.)  He had many complications at birth, the biggest being a heart defect.  He had open heart surgery at 5 weeks old.  That successful surgery was followed by many other surgeries/procedures, for various issues, most of which were done in the first few years of life.  He has had feeding issues since birth, as well, which led to a gastric feeding tube when he was 17 months (that he still has) – then two stents at an out-of-state intensive feeding therapy clinic in 2008 and 2010, both eight weeks long.  He still eats only mashed foods, and drinks through a straw.  Eating has always been a chore for him – not something he desires, like most people.  All of these medical issues, and feeding struggles indicate that Eli has some sort of chromosomal abnormality, so he has been seen by a geneticist since he was five months old.  He has had every type of genetic testing possible, and still they can not find an answer, even with all of the recent advancements in genetics.  When a new type of test becomes available, the doctor lets us know, we send in his blood, and we get no answer.  Because of this, we have never been able to say, with 100% certainty, that we would NOT have a child with this same mystery diagnosis.  In addition to all of that, Eli was diagnosed with autism in 2008.  Due to developmental delay, and autism, he has been involved in several types of therapies since he was only a few months old – Physical Therapy, Occupational Therapy, Speech Therapy, Hippotherapy, and most recently ABA.  He has had a busy life, to say the least.

I’m telling you all of this not to make you feel sorry for us, or him, and not to make you think we are some sort of super parents.  I’m telling you because I wanted to paint a little picture of what the last nine years have looked like, (in the TINIEST of all tiny nutshells.  His full story is a doozy).  While it has all been fairly hard, we consider ourselves to be just a normal little family.  Our normal may not be your normal, but it’s not bad…it’s just different.  Eli’s struggles have kept us busy over the years, and made us nervous about adding another child into the mix.  The THOUGHT of having another child crossed my mind almost daily, for the last 8 years or so, though most of the time, I just felt like it wouldn’t ever happen.  I even got rid of all of our baby stuff.  I think everyone gave up hope that we would ever expand our little family.

Then one day, that changed.  I swear, it was like I woke up one day and realized it’s what we should do.  I finally felt confident that we could have another baby and everything would be okay.  Josh liked the thought of another child, but there was a lot of fear involved.  To be honest, it took some convincing on my part.  It took months of thinking on it, and letting the possibility sink in.  We HAD to be sure this is what we wanted….   and in the end, it was.  So we went for it.

January 3, 2015, I found out I was pregnant.  Yes, Eli’s ninth birthday.  I put off telling Josh that morning, because I couldn’t believe it.  Then, because he knows me so well, he called me out for acting weird all day, so I told him.  The next few weeks, we were still in shock, and didn’t really know how to feel because we were so scared, and excited at the same time.  We told our family when I was around 7 weeks along.  It was a HUGE surprise for everyone, which made telling people that much more fun.  From that point, it was easier to just be excited.  Everyone was so happy for us, and feeding off it made our fear slowly trickle away.  As our routine 20 week ultrasound neared, I was feeling very antsy.  I desperately wanted to know if we were going to have a boy or a girl, even though I honestly didn’t care AT ALL either way.  I just had to know.  I was also nervous.  I didn’t want any scares, especially since I had been doing so well with staying relaxed about this pregnancy.

The tech that did the ultrasound was quite gabby.  We had her write down the sex of the baby, (so we could do the whole gender reveal in private), and she was very good about having us look away when she was focused on that region of the body.  She checked everything that she is supposed to, and told us that everything looked great… but there was this ONE little thing on the heart that she apparently felt was worth mentioning.  Bilateral EIF.  This is not a heart defect.  Here is the explanation I found online:

Echogenic intracardiac focus (EIF) is a small bright spot seen in the baby’s heart on an ultrasound exam. This is thought to represent mineralization, or small deposits of calcium, in the muscle of the heart. EIFs are found in about 3-5% of normal pregnancies and cause no health problems. EIFs themselves have no impact on health or heart function. Often the EIF is gone by the third trimester. If there are no problems or chromosome abnormalities, EIFs are considered normal changes, or variants.

She and the midwife both said that it’s a tough thing to explain.  When seen bilaterally, it is technically considered a soft marker for Down syndrome, but usually only if it is seen with other markers.  So, they feel obligated to mention it, but can’t really tell us anything more.  Since everything else looked so good, they reassured us that it was just a normal finding, and said not to worry.  We left the doctor’s office, and went to grab some lunch.  We brought it home and opened the envelope with the baby’s gender before we ate.  The picture she enclosed said ‘GIRL’!!  Just as everyone had suspected.  We would have been excited with either gender, so we were mostly excited to finally know.  No more referring to baby as “it”.

That afternoon, I couldn’t shake my uneasy feeling.  I was sort of obsessing over the mention of the bilateral EIF, in my head.  I woke up in the middle of the night, and was up for 3 hours, thinking about it.  I decided to call the midwife the next day to talk to her about it.  She told me I should consider doing the Verifi test, just to put my mind at ease.  (The Verifi test is fairly new.  They take mom’s blood, separate the baby’s DNA, and test for a few of the more common types of chromosomal abnormalities.  It’s 99% accurate.)  I went in the next morning to do just that.  It takes about 7-10 days to get results…. so we waited.

One week and one day later, I got the call.  It was a midwife I had never met that called to give me the news.  She introduced herself, then started the next sentence with “unfortunately”.  I don’t even know exactly what she said.  All I remember is that she told me our baby girl had Down syndrome.  I didn’t cry right then.  I actually almost laughed.  This was totally unexpected.  Was this really happening?  I mean, the chance of having another child like Eli was always there, but a child with Down syndrome?  A DIFFERENT syndrome?!  What were the odds of that?  I hung up with her, feeling like I had just been punched in the life.  Like my world was spiraling downward.  I could physically feel it.  A feeling I hadn’t felt since Eli was born, and they told us that something was wrong.  But I had to call Josh.  I couldn’t lose it just yet – not over the phone.  I calmly asked if I could come by his work, and he asked if everything was okay.  I tried to say that we could talk when I got there, but he knew something was wrong.  He called back 5 minutes later and made me tell him.  As I drove to see him, I completely lost it.  I called my best friend, and lost it AT her, sobbing and spewing out every thought that entered my mind.  I know that probably doesn’t seem safe, since I was driving, but I couldn’t help it, and I desperately needed to get to Josh.  He was waiting for me outside, when I got there.  We immediately embraced each other, and cried together.  After several minutes of hugging and crying, we mostly sat in silence while we soaked in this news.  We were at a loss for words.  I had to get Eli from school, so I left a little while later, and shortly after, he left work for the day.  That afternoon I contacted Eli’s geneticist, and she called to talk to us.  She said that she was certain this diagnosis has nothing to do with Eli.  We had just as much chance of having a child with Down syndrome as anyone else…. Eli or no Eli.  It was all by chance.

The next few days were pretty dark.  We tried our best to keep things normal for Eli, but we pretty much just holed up for a few days.  We broke the news to our family and close friends, and received SO much support and love (and chocolate) – but everyone kept their distance.  We just needed some time to process, and everyone understood that.

To be continued…

I will continue the story, and bring you up to date in my next entry, but I wanted to take some time explain our initial reaction to this news, since it comes across as negative.  Having already gone through so much with Eli, and being submerged in the “special needs world” over the last 7 years or so, is somewhat of a double edged sword.  We know how incredibly rewarding it is to raise a child with a disability, but we also know how scary and hard it can be.  All of the medical issues, (surgeries, doctor appointments, hospital stays), therapies, behavior issues, special ed, IEP’s, and don’t even get me started on thinking about the future.  It is not easy.  And when you get news like we got, that is the first place your brain goes.  All of the fear, the what if’s, the mental/emotional stress, the damage it can do to a marriage.  Eighty percent of marriages fail when the couple has a special needs child. ONE child.

So you see?  Our initial reaction of tears and sadness were not because we were thinking we weren’t getting something as good as a “typical” child.  We went into this thinking that we would get to experience both worlds.  That we would get to see what it’s like to raise a typical child.  Don’t get me wrong.  We are not naive.  We know that we could THINK we have a typical child, then things come up later in life… like autism, for instance.  That is always a possibility, especially for us, since we already have a child with autism.  But we still held a lot of hope of seeing that other world that we hadn’t yet experienced.  I feel like that’s important for everyone to understand.  I assure you that this blog, even the next post, will not be all doom and gloom.  It will be from time to time, but that’s just reality.  So I hope that everyone can read about our experience with an open mind, and maybe learn a thing or two… about a thing or two.  🙂

Until next time.