The Waiting Game

I have never been so miserable as I was waiting for the days to pass to get these test results back.  I don’t know how people get through the 10-14 day waiting game when they don’t get offered the FISH rapid results test.  The 3 days I had to wait was beyond torturous.  As I mentioned, it was Labor Day weekend so I had to wait an extra long day due to the holiday.  After we got home from the amnio. it felt good just to do nothing but I have nervous energy and was left in my room alone so I picked up my phone and started searching everything I could about my baby’s problems and what could potentially be the outcome.  I knew that my situation was completely different than anyone else’s or any of these statistics but what I walked away with was that if the baby has a unilateral cleft (which she did) then it was less likely that she’d have a syndrome.  One thing the doc. also told us is that midline cleft are 100% associated with a fatal syndrome and this baby did not have a midline cleft.  Bilateral, or both sides, with a cleft as also associated with a higher chance of a syndrome.  This made me feel a tiny bit better and grateful for that left-sided unilateral cleft.  But the more research I did the worse it made me feel and the more worried I became.  It was all consuming.  Chad and I decided we had to make plans for the weekend ahead to fill the time so that we weren’t left totally alone because we knew if we were that all we would talk about was this baby and the “what ifs”.

So plans we made!  Saturday morning I took Emmett to my friend Michele’s house for a big kid playdate in her backyard.  She made us coffee and coconut chocolate cupcakes with a cream cheese filling.  She’s kind of the best because these muffins were incredible and I LOVE her coffee!!  She let me talk about everything and just listened but didn’t let it take over the entire morning conversation either which was a good thing.  Later that night we had a BBQ with a few families at our house which again was so nice because we weren’t left talking about this baby.  Sunday I felt the need to be in church so I left the kids home with Chad and I went to church.  We went to my parents house for a lot of the day and Monday I made plans with a bunch of friends to go to the Highlands and have lunch at the Denver Biscuit Company in a park while the kids played for the majority of the morning.  It was perfect and when I was with people I didn’t think about the baby.  It was so nice.  But then it was Monday night and the next morning we would have to face the results.  I remember laying down in bed that night and a feeling like my body was suffocating came over me.  Panic consumed my body.  I felt like I was living in a black hole and falling deeper and deeper.  Now I know why people take paper bags to their faces to breathe.  I didn’t think I would survive this.  I didn’t know how I was going to face this.

Backing up to earlier that evening Chad and I sat outside on our porch and talked.  He told me that we had two choices in this matter.  We could let everything wrong with this baby consume us and be super sad about it or we could be the people that inspire others because of what we will have to overcome.  He explained that it’s a choice that we get to make, not that we have to make.  I went on a long walk after that and thought about how drastically my life would change if we had a special needs child.  It would just be a different path than what I had set out for or envisioned.  I maybe could still be a nurse but it would just take longer.  I thought about how I could hold a position on a board of whichever syndrome my child had or how this baby would change everyone’s life around her and it would be my mission to make sure that this baby had a full life and that she would make an impact on everyone she would meet. I decided that night that this baby wouldn’t hold any of us back and that she would only add so much to our lives.  I started seeing every special needs child differently from that day forward.  Parents don’t choose this stuff to happen to their children.  No one would ever want a special needs child but dang they are the best.  These children are so incredible and this entire experience opened my eyes up to that.  These kids are so strong and have to go through so much but it’s the parents who are behind these kids.  You can either fight for your child or let them slide through the cracks and we were going to choose to fight, if it was “just a cleft” or something more extreme.  It just didn’t matter to us anymore.  It was our baby.

Now if I’m being honest, and I always am on this blog, I had panicked moments about this baby and how much she’d potentially change our perfect little life.  I was scared to do the hard thing.  I didn’t want things to change.  I liked how things were going.  I am a selfish person sometimes and I need time to myself and I need to run and I like blogging and going out with friends and going on vacation with my husband without my kids and want a career someday that’s out of the house that doesn’t involve raising kids all the time.  These things all sort of started to crumble as I thought about how much attention I’d need to give to this baby.  But then I took a step back again.  I remembered back in August before we found out about this baby and her defects that I went to a triathlon to watch my dad race in it.  I saw one of the most marvelous sights that really got to me and made me cry while we were there.  I saw people with severe disabilities doing the race with the help of other human beings.  The people with the disabilities were able to “do” the race with the help of large carriers that the other people without disabilities were carrying.  In the swimming event the people with disabilities were able to lay on rafts while the other people without disabilities swam with a rope attached to the rope pulling them through the water.  In the running event the people with disabilities sat in a large stroller looking device while someone pushed them.  In the bike event the people with disabilities go to sit in a wagon cart looking thing while someone else pulled them along and peddled.  It was inspiring and touching and also now felt like foreshadowing.  I felt a very strong pull to volunteer to do something like this some day for someone else.  I thought about it on my walk that night and thought to myself that I could still do everything I like doing but it would just look a little different than how most people do things.  It felt good to remind myself that life would still go on and we could live it fully, just differently.  And ya know what?  No one is any more or less deserving of the privilege to take care of someone with special needs.  I am not a huge spiritual person or anything of that nature but I do believe in a higher power and I did start believing that if God did give me this special person that I needed to do my best to make sure she would always be protected.  I started feeling so lucky that God trusted me enough to give her to me.

Tuesday morning was approaching quickly.  So after panicking Monday night and feeling as though I was falling into a black hole that I could never pull myself out of I fell asleep and woke up to Tuesday morning.  I had all the emotions that day.  One second I was full of excitement thinking about how there could be potential good news and we could move forward with a peaceful pregnancy.  At other times I was filled with sheer and utter fear that something was drastically wrong with my baby and she may not even survive the pregnancy.  It was horrible.  So I did what I do best and tried my hardest to distract myself.  While also staying glued to my phone.  Chad told me he’d work from home and I took him up on that so that when the call came he could be right there next to me.  I threw the kids in the double BOB and went on a nice 4 mile run because running always helps me view situations in a different light.  I cried several times on that run but had to pull it together rather quickly so that the kids wouldn’t see me crying 15 times in 40 minutes.  After we got home I regrouped and the kids and I walked over to a park that is close by to be with friends.  By this point it was about 10:30am and I thought for certain I would have received the call by now.  So I did the unthinkable and left my phone at home.  I didn’t want to get the news while we were at the park with my friends and their kids.  I knew that good or bad I wanted to be in the comfort of my own home with only my family.  I knew that the call was going to come while I was at the park and I also knew that I could reach the doctor or the geneticist later.  I also sort of figured that if they were going to leave a message at least I would know immediately just by who was calling that something was or wasn’t wrong.  Either the geneticist would leave a voice message to call him or her back and I would breathe easy while dialing because I would know that everything came back fine or I would hear a voice message from the doc. and I would know while dialing them back that something was horribly wrong.  Either way I knew that there would be a voice message waiting for me when I got back to the park and I wanted to enjoy my last few moments of peace with my children and friends before receiving potentially life altering news.

So off we went.  And of course all I could think about was how I left my phone at home and how badly I wanted it back with me.  The suspense alone almost killed me!  I met up with two of my close friends and we had a really nice time.  We talked a lot about the baby.  One of my friends enlightened me big time as she used to work with developmentally disabled adults and told me that there are support groups everywhere for every syndrome and that help is always just a phone call or email away.  She told me I could absolutely live a normal life, go to school, go out with my husband on dates and raise a family while having a developmentally challenged child.  It changed everything.  I was back on the train of “we can do this!”, with a huge fist bump.  I thanked her immensely for talking to me and keeping things real.  I left the park feeling so empowered and ready to conquer any challenge that was waiting for me at the end of the voice message that was probably waiting for me on the kitchen counter.

With each step we took that got us closer to our house my heart beat got louder and faster.  By the time we approached the house Chad came out with my phone and told me there was a few missed called and some voice messages but that he didn’t listen to them.  I was completely out of breath as my heart was racing faster than it would have if I were running a marathon.  I composed myself, took the phone, and listened to the voice message.  It was the doctor.

My Amniocentesis Experience

Somehow I did manage to fall asleep because when I woke up again it was light out and Friday morning.  I was sick to my stomach and didn’t want to face the day.  I tried to keep my mind off of what was coming with my kids and house work.  I’ll be honest, I don’t even remember what we did that morning.  My dad came over to watch the older two for me so that I could meet Chad at the doc. office for the amnio.  I made my way over at around 12:30pm.  When I got there Chad was already there waiting for me.  They were running behind so it took a while to get me back there.  My eyes were blood shot and I hadn’t eaten in almost a day.  They weighed me and I had even lost 2 pounds since the day before.  I was a wreck.

After taking my vitals they walked me to a room where the procedure would take place.  They laid me down and Chad held my hand while the ultrasound tech set everything up and started checking out the baby to see where she was laying.  They need to do this in order to make sure that the needle doesn’t go where it’s not supposed to like the baby’s head.  Some babies will play with the needle or swat at it so they also like to make sure that the needle doesn’t go in front of the baby if they can help it.  The doctors came in after the ultrasound tech found the baby and they got ready.  There were two doctors, a man whom I had seen the previous day and a woman who was performing the procedure.  I was shaking and tears started running down my face.  I couldn’t help but think that this could be the last time I’d ever see my baby girl.  I tried to stay calm but the tears just kept rolling down my cheeks.  But then we all started joking around.  The thing about both Chad and myself is that when we are in tense or awkward situations we start making inappropriate jokes.  The guy doc. was really good at distracting me from what was going on.  Because we were going into Labor Day weekend he asked us what our weekend plans were and we told him that distraction was our main objective.  We asked him what he was doing and he told us he was going to Las Vegas and everything he’d be doing there.  We started joking about how lucky he was that he was a young single guy going to Vegas and how it’s not as fun to go with kids.  They found a spot on my lower middle abdomen that looked good for the needle penetration and cleaned me up with alcohol.  The needle was super long.  The doc. told me I was going to feel a pinch and that would be the needle being inserted.  I felt the pinch and watched as the needle went through my skin and into the view of the ultrasound picture by the baby’s head.  Once the needle was in the doc. pulled out some amniotic fluid which was a very pale/clear color.  She explained the coloring of the amniotic fluid looked great.  The female doc. told me it was a good thing I was skinny because it was making the procedure go very smoothly.  I told her I was anorexic, you know, a totally appropriate response to someone when you are pregnant with a child who could have potential life threatening problems…but jokes.  She pulled the needle out, threw a band-aid on me and it was over.

I think from the second I got into the room to the time they were done explaining what to look for afterwards which could cause trouble, took about 10 minutes.  I was envisioning an hour long thing but it was so easy.  They told me that the procedure had gone pretty text book and that if I were to start bleeding to give them a call immediately.  Bleeding was really the only thing that could happen or to look out for.  They told me that within the first 24 hours I may experience some pains in my uterus but that after that it’s not normal so also call after that.  I was also told not to lift things like my children, and to take it easy and lay in bed the rest of the day.  So if anyone’s asking, yes, get the amnio!  It’s a perfect excuse to go on bedrest and be completely pampered for at least 12 hours!

As we were getting ready to leave we asked the doc. when we’d get the results back.  He told us that we should get them by Monday as the test results take 48-72 hours to culture.  I reminded him that it was Labor Day weekend and asked if they were open on Monday and he corrected himself and said we’d get the results probably sometime Tuesday morning.  This specific test is called the FISH test and gets you rapid results much sooner than the chromosome results.  Those usually take abut 10-14 days to get back so this would get us back the test results for the syndromes we were most concerned about, trisomy 13, 18 and 21.  If those came back normal then we could rest easy.  If they didn’t then we’d need to decide quickly if we were going to continue on with the pregnancy.  Again, I knew I would continue regardless but I needed to know what was wrong with my baby so that I could mentally continue the pregnancy knowing the outcome and to prepare myself for anything that was wrong with this baby.  So this is also worth a mention…The guy doc. also told me that if the genetic counselor called me with my results then it would most likely mean that nothing was wrong and the test results were normal.  However, he said if we got a call from him it would probably mean something came back abnormal and that the end result isn’t good.  I really wish he wouldn’t have told us that because it made me even more paranoid.  I asked if I could continue to breastfeed and he said yes and I also texted him several more questions later that afternoon.

As Chad and I walked back to the car we both felt so much relief.  I think it was because that part was over and if I was going to miscarry then it would be sooner rather than later.  It felt really good to know that we had taken action and had some control in a situation that was completely out of our control.  It was nice to know that in a little over 72 hours we would have so much more knowledge about this baby.  Once we got home I hugged my kids tighter than I ever have and Chad sent me up to bed for some much needed rest and some food since I had neither slept nor eaten anything prior to the procedure.  It felt good to have that behind me and for the first time in over 3 days I felt a weight had been lifted off my shoulders.  That feeling was short lived though.  I couldn’t help but hop in the computer and research more about the spot on the baby’s heart and the connection with the cleft lip which by the way was diagnosed as a unilateral left sided cleft lip and palate.

The waiting game was not a great experience.

Thursday 1pm, September 2. The Level II ultrasound.

I went to lunch before this appointment with my two crazy kids, my mom and her best friend from waaaaaay back when.  Her friend was in town for a few hours after visiting other friends before their flight took off so it was a nice treat to see her as well.  We went to one of my favorite places to go eat back in our old neighborhood.  It’s a Greek place that is both kid friendly and has excellent food and was also close to where my appointment would be.  I hadn’t had much of an appetite but I gobbled up the Greek salad I got in about 2 seconds flat.  After we ate I handed my kids off to my mom so that I could go to this ultrasound and really focus on what was going on.  I met Chad at the Maternal Fetal doc. for the appointment.  They brought us back quickly and got started.  Of course it was the same deal.  The ultrasound tech did the scan and then rather than waiting for a call the doc. came in after the scan to go over what they were looking at and the images of concern.  The ultrasound tech was nice enough but didn’t tell us anything.  The doc. finally came in.  There was no sugar coating this topic…”So how are you feeling?”, he asked.  “I’m scared of what you’re going to tell us.”, I replied.  He proceeded, “Well, this baby definitely has a cleft lip and the palate looks like it goes pretty far back too.”  As if my heart couldn’t sink any further, it did.  He asked what I knew about clefts and how I felt about having a baby with a cleft.  I could only tell him that I would be lying if I said I was excited about it and that I was actually terrified of seeing my child for the first time.  He told me that was a completely normal response to news like this and then went onto explain that this is fixable and that technology and surgeons these days do an amazing job with all this.  He reassured us that clefts in and of themselves are nothing to be concerned with and that he even had a roommate in college who had a cleft lip and palate and he went on to be a doctor.  Oh GREAT these kids are “just like everyone else” and can hold jobs and get degrees.  Whatever.  It still didn’t help.  But then it got much much worse.  The doc. was saving the best news for last.  “Now something else to mention with this baby that could be cause for concern is that there’s a white spot on the baby’s heart called an echogenic intracardia focus.  When in isolation this isn’t a big deal and up to 30% of asian baby’s have this white spot but in conjunction with another anomaly, and in this baby’s case the cleft, could mean that this baby has a syndrome, most likely Trisomy 13 (Patau syndrome), 18 (Edwards syndrome or 21 (downs syndrome).”  Never in my wildest dreams could I have prepared myself for this type of news.  My mouth dried up, I felt a panic come over my body that I have never experienced before and I felt like hyperventilating.  I really didn’t think it could get worse than the cleft and now the cleft seemed so insignificant and I would have taken “just a cleft” over anything.  I felt angry at myself for even being upset over such a silly little defect.  Now I just wanted my baby to survive longer than an hour outside of the womb.  And the best case scenario out of those 3 syndromes would be downs syndrome in which case my baby would have developmental disabilities for the rest of its life.   Trisomy 13 and 18 are fatal syndromes and best case scenario for those syndromes is that the baby could live for up to a year with the help of technology and that’s just no way to live. I didn’t know what to say or where to even begin to process this information.

The doc. knew that this was a lot of information to take in and could see the panic set in.  I asked where we were supposed to go next with this information.  He recommended we get an amniocentesis to rule these syndromes and others out that are associated with clefts.  I had very little knowledge of amniocentesis but I did know that it didn’t come without risks.  The doc. explained that the biggest risk would be miscarriage and that about 1 in 500/600 pregnancies miscarry due to this procedure.  He also went onto explain that maybe those pregnancies that ended in miscarriage due to this procedure would have ended anyways because only high risk populations get amnio. to begin with.  At this point odds didn’t really mean much to us considering that 1 in 700 kids have a cleft in the first place.  So basically if you had told me I had a 1 in 700 chance of having a kid with a cleft I would have laughed and said, “Thanks, I’ll take my chances”.  Odds?  What are odds?  All I heard were the risks. And as I was thinking about the odds in my head about conceiving a baby with a cleft, all I could think about were that my odds of miscarrying during or after an amnio. were even higher than having a baby with a cleft!  We were totally blind-sided.  He told us we didn’t have to make a decision right away but that it probably needed to happen in the next week or so if we were going to have it done.  I was in shock.  I didn’t want to have to face what could be.  What if the baby had a syndrome?  Would we terminate?  Would we keep it anyways?  How could we possibly be able to deal with this?  How would our other children be able to deal with this?  There were so many questions that no one but my husband and I could answer.  We just sat there, both of us with looks like deers in headlights.  So many thoughts and yet my brain felt completely empty all at the same time.

At the end of the appointment Chad asked me if I wanted to know the gender of the baby.  We had decided prior to the appointment that we wanted to know the gender if the baby actually had a cleft because we couldn’t bare the thought of calling the baby an “it” with the defect.  So we decided we wanted to know before leaving.  The baby wasn’t cooperating but we got a decent shot of the parts and the amnio would later confirm, it was a girl.  My heart both filled with excitement and sank.  I knew it was a girl.  I didn’t need confirmation.  I wanted it to be a boy once we found out the baby had a cleft because I didn’t want a girl to have a scar on her face.  But I wanted another girl so badly so the news was a mixed bag of emotions, just like everything else that day had been.

We left the appointment completely overwhelmed and in shock.  As soon as we got in the car to drive home I knew we had to get the amnio.  There was no doubt in my mind.  We couldn’t go through the next 22 weeks not knowing what was wrong with this baby.  I also decided that no matter what the results would be, there was no way I was going to terminate the pregnancy.  I’m pro choice and definitely would have thought I would have terminated a baby who had no chance of life in the outside world prior to being faced with this situation but when faced with this it was a completely different reaction than I had anticipated.  I just couldn’t bare the thought of never meeting my child.  I didn’t want to have to be the one who made that decision.  I honestly wanted the amnio to make that decision for us.  I figured that if I miscarried because of the amnion then the pregnancy was probably doomed to begin with and that the amnio may just help speed things up.  But I also wanted to give her a chance.  On the other hand I also felt it was so selfish of me to bring a baby into this world who had a very slim chance of surviving longer than a few hours.  I didn’t want a life like that for my child and also knew that a life on tubes and in a hospital is no life at all and would be for me and only me, not my baby.  It was all just so horrible.  Of course there was also the chance that nothing was actually wrong with this baby, with the exception of the cleft defect.  If that were the case then she could go on to have a completely normal life and be just like any other kid.  But my mind doesn’t usually skip to that happy place first.  I think of the worst case scenario and only grow more positively from there.  This doesn’t work for everyone, especially my husband, but it works well for me.

Before even leaving the parking lot I texted the doctor to find out the earliest I could go ahead and get the amnio.  His reply felt like it took hours.  In the mean time Chad and I drove home both in silence and in question.  I couldn’t even cry.  I felt so numb.  Now this wasn’t just about a dumb stupid little defect on her lip, this was a potential end to my pregnancy and the end of even having a 3rd child or worse, having a 3rd child and then watching her die soon after meeting her.  When the doc. finally got back to me he told me I could get the amnio the following afternoon at 1pm.  I wanted to have it done sooner than that but if that was the earliest I told him I would take it.  The next 24 hours were absolute torture.  My mom and a very good friend of hers were at my house when we got home because they were watching the other kids for us.  That was the first time I had cried.  I saw my mom and just lost it.  I could barely speak.  I couldn’t even believe this was happening to us.

I process things by talking them out until I’m blue in the face and then I talk some more.  I research, I google, I talk to others in similar situations, I find support groups on social media.  Some people shut down but I am the opposite of that.  I need people.  So I sat on my porch swing with my mom and her friend and cried and cried and cried and talked and cried some more.  I was so scared.  I had never felt this feeling of scared before.  This was an entirely different level of scared that I somehow didn’t think I could live through.  For the next 4 hours I sat and talked and cried.  I couldn’t be left alone with my thoughts.  I was scared of the amnio. because I was scared of losing my baby girl in the next few days.  I was scared of the results of the amnio because what if it was bad news?  For the first time in my life I realized that I’m NO one special and that NOBODY is exempt from bad things happening to them in life.  We are all equal in this game called life and shit happens.  I started seeing everything and everyone around me differently.  Why would we be spared?  Why wouldn’t I have a baby with something wrong with her?  We took a chance and possibly lost or did we win because this baby would change us all for the rest of our lives no matter what the outcome was?  There were just so many unanswered questions.  I just wanted time to speed up and I wanted to know the outcome already.  Anyone waiting for a surgery, procedure or test results knows how slowly time seems to pass during the waiting period.  Time basically stopped for me the day of my level II ultrasound.

That night I stayed up way too late researching and crying with everything I found.  No amount of research was going to change the fate of this baby.  I knew that whatever was wrong with her had been there since the start.  We were just unfortunately going to find out later than I would have liked.  I started getting mad at my body wondering why in the world it had held onto a baby that could have a fatal syndrome and why I didn’t miscarry in those first 12 weeks.  But then I would remind myself that I had the second trimester sequential blood draw and it was negative so how could this baby have anything chromosomal abnormalities?  And what the hell was the point of that blood draw anyways if it were wrong or gave me a false negative!?  I also reminded myself that I had been and was so so so sick and that this pregnancy felt identical to my pregnancy with Cam so how could this be a sick baby?  Things just weren’t adding up.  But then I would do more research and it seemed that anywhere I looked that the odds of having a baby with a cleft and an echogenic focus weren’t good and that the baby would most likely have an abnormality of some sort.  The more I read the more I cried and the more sleep I lost.  I didn’t eat for 24 hours.  I was so stressed.  And on top of all that could be wrong with my baby I still had to go in for the amnio which could ultimately end it all.  It was so much.  Let’s also not forget that I was taking Anatomy and Physiology and was losing a lot of study time.  I had told myself that if there was something wrong with this baby that I would stop the course but I also felt as though life had to go on and that I couldn’t give up my dream just because of a bad pregnancy.  I wanted distractions in my life and I finally decided that it was in my best interest to continue the course even if I failed it because I needed something to take my mind off of all of this.  But, I gave myself permission to do nothing with the course over the weekend after my amnio if I couldn’t handle it.

By about 2am I finally decided I needed to try to go to sleep and somehow manage to fall asleep.  I was scared to fall asleep because I knew that the morning would mean that I had to face the amnio.

The second Trimester and the day my world changed (the Anatomy Scan)

Of course the second trimester definitely didn’t mean turning a corner for this girl but it did get slightly better.  I started to workout again and I wasn’t waking up every morning with the feeling like I wanted to die.  No, that feeling happened after I got out of bed rather than happening as soon as I opened my eyes.  Some mornings were better than others and as always, working out helped the nausea slightly.  I had about 3 weeks between finishing summer school and beginning my fall semester too which was really nice.  I took that time to go to KC to visit my in-laws and the Ozarks with my family.  That was a HARD trip but I also discovered that I could drink coffee again!  Let’s not kid ourselves, it wasn’t great but because I was experiencing such horrible headaches it definitely helped to force a cup or two down in the mornings.  Nausea was still on again off again throughout the day and I was single parenting while on our trip so it was super tough on me to keep two kids entertained all day and then to put two kids down to bed every night for 10 days straight.  Most nights I just kept Em awake and would have him go to bed with me since I was still going to bed early.  We got through that trip though, just barely.  When I got back I started Anatomy and Physiology part 2 and also had my 18 week anatomy scan to look forward to.  We had decided not to find out the gender of this baby but I was still excited to see the baby anyways.  I was also feeling strong kicks by this point so that was super reassuring as well.

The Anatomy Scan

The anatomy scan was on August 31, 2015, my husband’s birthday of all days.  I went in by myself SO excited.  This was a new to me office through Kaiser so I wasn’t sure what to expect with this scan.  I chatted away with the ultrasound tech for almost an hour.  I didn’t think twice that anything was wrong but of course hindsight amiright?  The tech got almost all the parts that she needed except for one, the face.  My tech for my last two pregnancies was in a different office and she explained everything to me, even the bad stuff.  Kaiser has a different way of doing things and the techs aren’t allowed to say anything to you or reassure you that your child is ok.  You have to wait for the doc. to review the ultrasound images and then they call you to discuss everything afterwards.  Anyways, the tech had me go to the bathroom to empty my bladder and had me lay in every direction imaginable to get the baby to move out of my cervix.  The baby was super low and the tech just could not get a great photo of the baby’s face.  She worked on me for a good 30 minutes, even had me upside down on the table at one point.  I do remember her circling the baby’s lips for some odd reason but again, at the time I didn’t think that that was an indication that something was wrong.  I left with my pictures of the baby, calm and happy.

After my ultrasound I went home to meet up with Chad.  Since it was his birthday my parents watched the kids and we went out to a super nice restaurant for dinner.  We chatted about the ultrasound and dreamed about our life with 3 kids.

The next afternoon, around 4pm, I got a call.  This call went to voicemail because I never have my phone on me when I’m at home (or let’s be honest, I was probably passed out cold on the couch).  When I listened to the voicemail it was from the genetic office asking me to please call them to talk about the ultrasound.  I was happy it wasn’t the doc. because why would a genetic counselor call me if something was wrong with my baby?  I figured it was Kaiser protocol to have the genetic counselor deal with all calls about ultrasounds. So I called her back.  She started off with the usual…”everything looks great!  The baby’s brain, heart, lungs-it all looks terrific!  But…”  The ONLY think I could think was that there was something wrong with me again like the placenta previa but I was wracking my brain trying to figure out what else could go wrong with the mom if nothing was wrong with the baby.  I just remember thinking to myself, “cut to the chase lady, you are kind of driving me up the all!!”  Well eventually she did cut to the chase and it wasn’t at all what I was expecting.  “Lindsey, don’t be alarmed but the doctor thinks this baby might have a cleft lip.”  My heart sank.  I wish I could put into words how I felt at that moment but there are no words to fill the void when someone tells you there may be something wrong with your baby.  She went on to say, “now, don’t lose sleep over this.  We don’t have great images of the face so if you would like, we can offer to have you come in for a level II ultrasound to examine this further.”  I didn’t have to be offered the level II ultrasound.  I was going to request one anyways so of course I immediately said yes and booked the first available.  The genetic counselor was again very nonchalant about the whole thing and brushed it off like it was probably a fluke which actually gave me false hope.  I almost wish she would have proceeded to say something like “if this is a cleft, it’s easy to fix” or something a little more reassuring than “It’s probably nothing”.  Like I said, it was a Tuesday afternoon and the first available appointment at the maternal fetal high risk office wasn’t until Thursday afternoon aka a lifetime away.  I took it and then proceeded to go inside, because I was in the garage taking the call, where Chad was working.

I sat down in the chair across from him and said, “well they think this baby has a cleft lip”.  I burst into tears and started to panic.  Of course my non judgmental, caring, thoughtful, amazing husband only responded with, “well that’s fixable, that’s not a big deal at all!  There could have been so much worse we could have found out.  Linds, this is a non issue.”  Of course he would say that.  Why?  Because he’s amazing and always knows just what to say.  And then he went on to say that we shouldn’t jump to conclusions and that we just need to wait until we get the level II ultrasound to process anything.  I knew he was right and that helped a ton to hear all that but I couldn’t help but think that if this baby had a cleft how devastated I would be.  I went from totally freaking out to calm to freaking out again all in a matter of hours.  There were all sorts of emotions that were flying through my head.  We called our families and told them what was going on.  After I hung up with my mom I had completely convinced myself that the baby didn’t have a cleft and that the doc. didn’t know what she was looking at and that they were just being overly cautious since they didn’t get a clear shot of the baby’s face.  I believed this until Thursday morning when I finally woke up and said to myself that they are doctors and they know what a cleft looks like and they definitely would not have told me this had they not seen something.  By Thursday morning I knew my baby had a cleft. I didn’t need another ultrasound to convince myself otherwise.  Chad and I use humor to lighten up situations so we were already joking about it by Thursday morning.

I had prepared myself for the final word on the cleft as well I knew how to.  One of the first things I stumbled upon while reading about clefts was a blog, Step by Step Cleft.  I read the entire thing late Tuesday night after receiving our news and cried and cried.  This family was so much like ours and the baby was CUTE!!!  I initially wasn’t sure how a cleft baby could be cute but seeing a baby who was actually adorable both with his cleft and after his repair was so reassuring to me.  This blog helped me so much.  I also looked at all.the.pictures of cleft babies online the next two days.  All I could focus on was the end result and how I couldn’t wait to have this baby “fixed” if it did indeed have a cleft.  But then I would bring myself down a notch and tell myself that it was impossible for my baby to have a cleft.  The next day I researched how this could have happened.  I think this was one of the things that I did to convince myself that this baby actually did have a cleft.  One of the ways clefts happens is through folic acid deficiencies.  I have written about my MTHFR genetic mutation on here before so this wasn’t a surprise to me.  I’m ok with the fact that I probably caused this.  I was just lucky that my other two kids didn’t end up having defects.  I’m convinced that somehow my body didn’t absorb enough folic acid, even though I was taking 5mg of the stuff 3 months prior to getting pregnant and then during the entire pregnancy.  The other preventative stuff just didn’t make sense.  I am not a smoker, I didn’t drink alcohol at any point in my pregnancy, I’m not overweight, I’m not of a different race other than Caucasian, I don’t work around chemicals or in a chemical plant all day etc, etc.  So to me, this is the only thing that even makes any type of sense.

It took forever to get to Thursday.  I tried keeping myself busy with the other kids and my class.  My class started to suffer big time as every time I sat down to even so much as read over my notes, I got distracted with all things related to clefts.  My mind became consumed with cleft everything and I hadn’t even been given the full diagnosis that my baby even had a cleft.  I feel like I became a cleft expert in a matter of 36 hours.  This is how I prepare myself though.  I needed as much information going into this appointment as possible to make sure I was armed.  For me, information is power and I needed to feel semi in control and powerful in this appointment.  Little did I know that nothing I could have done would have prepared me for what they were about to tell me at this next appointment.

 

Pregnant with Baby #3, the first 12 weeks

As I have done with every pregnancy of mine, I convinced myself that I was going to miscarry this baby.  I do this as a defense mechanism so that I don’t get too attached like I did my first pregnancy in the hopes that it won’t hurt quite so much.  I told both sides of the family by having the kids wear shirts that I made saying “Big Brother” on Emmett’s and “Big Sister” on Cam’s.  My mom saw the shirts right away and couldn’t even believe it.  It took my mom pointing the shirts out to my dad several times before he caught on.  He even read the shirts out loud and after seeing and reading the shirts only commented “Yes, that’s right, you are a big brother and you are a big sister” which makes no since at all since Cam was not a big sister at the time.  We told Chad’s family in Las Vegas at our yearly family trip the same way.  His dad caught on right away and it took Chad asking his mom if she wanted to hold Cam by holding her up and literally putting the baby at eye level for my mother in law to catch on.  His sister also caught on right away.  It was a really fun way to share our news.  I was only about 4 weeks pregnant when we shared so we hadn’t seen a doc. or anything by this point but I knew that if I did miscarry I wanted everyone to know I was pregnant to share in the sadness with me because I didn’t want to go through that pain alone.

Anyways, I didn’t miscarry.  When I got back from our Las Vegas trip I called the doc. to make an appointment and they wouldn’t see me until I was at least 8-10 weeks along which was discouraging for me especially since I was low on progesterone when I was pregnant with Em and needed to take supplements for the first 14 weeks.  This is only found out through a blood test which you need to take super early.  So what does a crazy pregnant lady do when she wants to find out if the pregnancy is viable?  She asks her nurse friend if she can come in after hours to be scanned (this certain nurse friend is at the hospital as I type this getting ready to meet her baby #3 and I am thrilled for her!!!).  But first let me just explain how I knew this pregnancy was viable.  At exactly 5 weeks and 3 days I felt nauseous, tired and pregnant.   I went on a run the morning of June 3, 2015 and I could barely make it through 4 miles.  I felt like vomiting the entire time.  Now at 36 weeks pregnant I was over this feeling completely but so early on in the game this feeling made me feel excited and happy.  The other unfortunate thing is that my summer school course started on June 1 which meant an entire summer filled with nausea while trying to take this course.  It was horrible.  That next week after I was over 6 weeks I got scanned by my nurse friend and there was indeed a little beautiful heartbeat measuring at 6 weeks and 4 days which is exactly what I had calculated.

As the weeks rolled on I became sicker and sicker and sicker with no end in site.  I saw a regular doc. on June 24 at about 8.5 weeks pregnant.  They scanned me there and baby’s heartbeat was nice and strong and they told me baby was developing beautifully.  All the parts were where they needed to be and everything looked good for an 8 week old embryo.  I was so happy.

Not a lot to report over the next 4 weeks.  Lots and lots of exhaustion and nausea and the feeling over literally wanting to die.  I even had to get Emmett into preschool during the summer because I could barely parent.  I wanted to die.  It was hard to do everything.  When the sun would come up in the mornings all I could think was “not this again”.  Some days I would go to bed at 6:30pm and not get up again until 7am the next day.  Coffee tasted horrible, brushing my teeth was a nightmare, being alive was just awful.  I lived day after day like this for the first 12 weeks.  Oh did I mention I was also taking a STATISTICS course!?  Dumb.  But hindsight.  And I’ m glad it’s over.  I proved to myself that if I can somehow manage to take a stats class while pregnant in my first trimester along with being a stay at home mom that I can do any course.

And can I just say that being pregnant in your first trimester in the dead of summer is stupid?  If I had it to do over again I could have gotten pregnant in August or September and had another April baby or a May baby because at least there would be some cooler mornings thrown in there.  Holy shit.  Having to go through the entire summer for the first 12 weeks was just a death sentence.  And of course the only things that sounded good to me were craft beers and margaritas.  The kids wanted to play outside every waking minute and I just couldn’t be out there.  So I would set up shop on our porch swing and try to watch them and count down the hours until nap time at which point I would put Cam down and go lay with Em in his room until he fell asleep.  I would say 90% of the time I would fall asleep before him and wake up in a daze 2 hours later.  It was a shit show in our house and I think we can all agree around here that we are happy to never see mama/Linds pregnant again.

One whole year

It’s been one whole year since I found out I was pregnant with Aubrey. I want to start at the beginning because this one was an intense pregnancy and unlike many other pregnancy I’m sure. I want to start writing more posts about this in hopes that I can help someone else along this journey.
I have mentioned that Aubrey had some complications and that the pregnancy was terrifying but I haven’t really expanded on that. I think partly because I didn’t really know where or how to begin. When we were going through it all it was just so raw and emotions were everywhere. Sometimes I wish I had documented everything in the moment but the second I would sit down to write the words weren’t there and I would just cry. I cried a lot. So now that’s it’s been a year and she’s here I think it will be easier to re-capture everything I was feeling and articulate it the way I had wanted it to sound. So now I want to start at the beginning and where better to start than the day I found out I was pregnant with our sweet baby #3?!
May 17, 2015: I woke up EARLY. I had to run a leg of the Colfax Marathon with some friends. Six miles to be exact. I was 8 days past ovulation and knew there was a chance I could be pregnant. I won’t go into the details of how one gets pregnant but I will say that Chad and I did the deed one time this cycle and after that one time I had a very very very strange feeling that I was for sure pregnant. I just knew. So I wasn’t surprised that I had a horrible run that morning. This was my first physical indication that I was pregnant. My legs were tired and no matter how hard I pushed my body that day it wouldn’t go any faster. I knew I could go faster because I had it in me but for some reason my body just wouldn’t go. It felt like I was putting in 100% effort and getting back only 50%. The entire run I just kept saying to myself “If I’m not pregnant than I don’t know my body at all”. After the race I just wanted to get home and take a pregnancy test. I knew it was waaaaay too early for a test result to be positive but I just couldn’t wait any longer. I was so excited and just wanted to KNOW! So when I got home my parents were actually there. I ran upstairs and pretended like I had to go to the bathroom or shower or something. I tore open a dollar tree pregnancy test and took it and waited. I waited and waited and low and behold after about 10 minutes I saw the faintest line I had ever seen while taking a test. Maybe no one else could see this line but I could see it and so could Chad. Unfortunately only time could tell whether or not this was a true line. I just knew though that this was a positive. The next 24 hours were so hard to get through because I just wanted my body to make enough HCG to show a true positive.
The next morning I took another pregnancy test but this time it was one of the expensive First Response pregnancy tests. It came up positive right away with two beautiful pink double lines. To say I was thrilled was probably the understatement of the century. Baby #3 was onboard and while the thought of miscarriage was at the forefront of my mind I really thought this one was going to take. So I continued on with my day and texted Chad a picture of the positive pregnancy test. His response? “Welp, here we go again.”

A Letter to my first baby girl close to her 2nd birthday

I know, this post is almost 2 months late but honestly I just haven’t thought about how time has passed so quickly and I didn’t even realize I have written next to nothing about Cam since her 11 month (or maybe 1 year!?) post!  I want to remember Campbell just as she is now so I have decided to share with you all a letter to my first baby girl.

Oh my Campbell Bean.  I wish I could even begin to articulate how much I love you and how much joy you’ve brought to my life…ok really our lives.  All of us.  Me, your dad and your brother and sister.  We all are totally fascinated by you.  You just complete our lives and I am in awe as to why or how I even got so lucky to be your mom.  Ever since the first day you were born I have studied your every feature and asked how you are my daughter because I don’t see a resemblance between us what so ever.  But damn am I glad you’re mine.  I have always wanted a girl and when I was pregnant with you I tried to convince myself I was having another boy so I wouldn’t be so disappointed when they told me I was having another one but to my surprise they told me you were a girl!!!!!  Cue crying for days!  I asked at every single ultrasound after that one that they told me your gender if you were still a girl and when you came out on your birthday the first thing I asked the docs was “is she still a girl!?”

I can and can’t believe you are two now.  I’m not going to go through the cliche questions of “how on earth did this happen?!” because I know how it happened.  We have lived every day to it’s fullest and so life has literally sped by at lightning speed.  You are my little spit fire.  You have always been a super intense child but as you grow the intensity has manifested in different ways.  When you were a baby you cried non stop for the first 3 months.  That was intense.  When we tried giving you a bottle or pacifier you flat out refused every.single.time.  That was intense.  When I tried handing you off to your dad so that I could get some stuff done around the house you SCREAMED your head off.  That was intense.  When you didn’t and still don’t want to do something you are very assertive and just won’t do it.  That’s intense.  You love hard and you hate hard.  It’s hilarious and scary in the best of ways.  You make us laugh all the freaking time.  You share so well and yet you know what is yours and if someone takes something that’s yours you let them know it’s yours but never are physical (unless it’s with Emmett).  You just simply state that it’s yours until that person gives it back.  You have a smile that lights up every room and a laugh that’s contagious for days.  You are the sweetest little mommy I have ever seen to both your dolls and your baby sister.  You are constantly hushing your babies and feeding them to sleep and if your little sister is crying you are the first to let me know that “Aubrey is cy-ing mommy!”.  You will rush over to her with the first bottle you can find and shove it into her mouth or find a pacifier from when Emmett was a baby and put that in her mouth.  You are quick to give her all the hugs and all the kisses too.  She is a bit terrified of you but you mean well every single time.

You LOVE your sleep.  I have never seen a kid who actually asks to go to sleep like you do.  You know when you’ve hit your limit and will take my hand and tell me you want to go “nigh nigh” and get “blue bunny”.  You have climbed out of your crib once but haven’t done it since and will stay in there for hours in the morning until we are ready to come get you out.  I’d love to transition you to a big girl bed but you are just so dang happy in that little crib of yours that it breaks my heart to think about moving you.  You are just about as sweet as they come but also as sour as they come.  You remind me of those sour patch kids commercials actually where they do sweet and sour things in the same 2 seconds.  You will beat your brother up if it comes to it but you guys seriously can’t live without each other either.  You guys mimic each other so much.  It’s super fun to watch.  He does everything you do and vise versa.  How I have kids who love each other so much isn’t really beyond me but I also knew it could have turned out a lot differently too.  I hope Aubrey fits into your little clique.

You get yourself dressed most mornings and are very particular in which shoes you wear for the day.  Unless I force you into your carseat shoeless and bring along the shoes I want you to wear, you will pick them out and that’s that.  You also love people.  You love being the center of attention and you aren’t the least bit shy.  You love going with me to Emmett’s preschool because you get to play play play until we have to leave.  My favorite is watching you find dolls and put them in a mini grocery cart and push them around the room like they are in a stroller.  I was a bit worried about you when you were 1 because you flat out refused to go to childcare at the gym but you have really come out of that stage.  You still prefer me above anyone else and I’m the only one who can put you to bed if I’m home.  If I’m out your dad or anyone else can put you to bed just fine but if I’m home cleaning up or something I have to drop everything I’m doing so that I can put you to bed.  Your dad actually wishes he could put you to bed just once but we have tried that a few times and it totally blows up in our faces.

Oh my bean, there are just so many things I love about you in this stage right now.  I love your smile.  I love your laugh. You get the biggest kick out of the smallest things.  I love that you will hug Emmett out of nowhere or kiss Aubrey on the cheek or hug me on the leg.  I love how soft your skin is and I love the sound of your voice.  I love that you can sing songs in perfect pitch.  I love how you’re willing to play just about anything and everything your brother wants you to play.  You guys have this game you play out in the car called “pusser lever” and it’s a place you guys have made up to go to when I let you play in my car in the garage.  You are constantly asking Emmett if he wants to go to “pusa levea”.  I love that you always ask to hold my hand either while getting ready to go to bed or while we are driving in the car.  I love that you will sit in a stroller!!  I love how much joy you have brought to our lives.  I love that you love sleep.  I love that you are so particular about so many things.  I love that you love swimming and baths and all things water.  I love watching you run.  I love watching you try new things.  I love how easy it is for you to make a new friend whether that friend is 5 months or 75 years.  I love that you make make anyone laugh.  I love that you say the funniest things like “See so tiny” or “See so pretty” when you see Aubrey.  My Campbell Bean, I could go on and on and on because really I just love everything about you.  Even the things that I hate (like tantrums and biting) I love about you.  I try not to laugh when you do something you’re not supposed to because inevitably your brother will follow you and he knows he’s not supposed to do 1/2 the things you do because he knows better but you make it so hard not to laugh.  You are a true ham.  Quick story about that: We all were out to eat about a week about with your great Aunt Kim and you and Emmett were making a royal mess.  You guys had decided to take a water from the table and mix in everything you could find from salt and pepper to hot sauce and sweetener packets.  It kept you guys busy but it was super gross.  Anyways, somewhere along the time we were there you kicked Emmett or something because he immediately started telling me about what you had done to him.  I asked you to say you were sorry to him and you immediately looked straight at him and said “sooooo-RE EM”.  I could barely contain myself.

Thank you for choosing us as your parents.  I ask God everyday how I got to lucky to be your mom.  You have so much personality and so much to offer this world.  I can’t wait to see where these things take you as you grow up.  It’s definitely bitter sweet to watch you start to leave the baby phase and now to the toddler stage and soon to the preschooler stage but it’s so fun.  I remember my mom asking a friend of hers who had grown up children, probably in their 20s at that point, when my brother and I were in grade school, which stage had been her favorite and she told my mom that it just gets better and better as they grow.  I understand that 100% now because so far I would not want you as any other person than the one I have right now and I’m sure it will continue to be that way. You are the light of our lives and bring our stress levels down about 1,000 notches because of your zest for life.  I love you with all of my heart beannie.

-Mom