Lucky.

Stress.

It can hinder you. It can consume you. It can become the demon that follows you wherever you go.

That’s exactly what happened to us. Back in 2019, we thought our encounter with the fertility specialist was going to relieve us of some of the anxiety we had previously experienced. As the months ticked on by, the worse it became. Every month, I was on an obnoxious combination of medications. The goddamn needles were the worst. But I absolutely DESPISED being on a time schedule. Doctors appointments on certain days. Drugs at certain times. Stab yourself with a needle tomorrow morning. Take this medication once. Take that drug only twice a day for 4 days. Ultrasound this day. Sex that day. Then, wait. Wait two weeks. Don’t take a pregnancy test until this day. Hope for the best. Call us if you have news. Call us if you don’t have news. UGH.

I had hope for it. I really did. I had hope that the drugs would work and we’d have the baby we’d been waiting for. But, we did 4 cycles and we prayed for success each time. What were we met with? Failure. It was hard on us, especially me.

After our 4 cycles, the doctor offered us another option: IVF. We found out quick that it was insanely expensive (we’re talking over $10,000 for ONE try) and the success rate was NOT great. It would’ve meant months and months of prep and putting me on an even more obscene amount of drugs (which is something I really didn’t want to do.) It would’ve meant waiting and stressing over the embryo transfer. We would’ve prayed and hoped and wondered, did it work? Then, we would find out if I was pregnant or not. If I was, would I be able to carry past 8 weeks? I had miscarried so many times that I could’ve miscarried again. Or, maybe I wouldn’t have. Who knows. We weren’t willing to take the risks. We weren’t willing to dump so much $$ into a procedure that offered such questionable success rates. We were not willing to get our hopes up again and end our IVF experience with no baby. The risks far outweighed the pros so for us, the decision to pursue IVF was quick and easy- BIG FAT NO!

The doctor made it sound like IVF was our last chance- the end of the road- but in reality, it wasn’t. For us, there was a better option, one that we had thought about for quite some time and started to seriously consider after Baby Charlie passed away: Adoption.

If we adopted, we would have to wait to be matched with a birthmother, but we knew there would be a light somewhere at the end of the tunnel. And, not only would we be making our family whole, but we would be a helping a family and a baby that really needed us.

We started researching agencies and spent months scouting through websites, making phone calls and trying to find the best fit for what we wanted. There were plenty of options- we could adopt through foster care, adopt internationally, or adopt domestically. We could choose an older child, a younger child or a newborn baby. But, we knew from the start that we wanted to experience infancy. We wanted to be up at 3:00 AM changing a blowout diaper and watch them grow up from the very first moments of life. Finally, after months of research, we chose an agency that met our needs, one that only did domestic infant adoptions. Our application was sent in and the ball was rolling. We couldn’t wait.

We knew that as were buried in the midst of the adoption process, there was a woman somewhere out there who was pregnant or would be pregnant soon. She would make the very brave decision to turn over her parental rights to another human being. She would sort through adoption books of families waiting for a child- ours would be one of them. Then, if we fit what she was looking for, she would choose us. We would then get a phone call saying we had been matched with a birthmother.

We couldn’t wait for that call.

Unfortunately, our excitement was short lived. In August 2020, we received the news that our adoption had failed.

The feeling of frustration, anger and sadness that came over me was instantaneous and overwhelming. I just started crying… and I couldn’t stop.

It’s very hard trying to explain how I felt in that moment and the days afterward. I felt absolutely defeated. Like, if I were a balloon, someone had stuck a pin in me and slowly sucked out all the air. Like, if we were at war, the planes had just come out to drop bombs on us. I just could not believe that it was happening. Neither could anyone else. Dan, who is normally the level-headed, chill husband became as upset as I was. Our parents and friends were in disbelief. We thought we had finally gone down the avenue that would make us parents. We thought THIS WAS IT. We were so ready.

But adoption had been added to the pile of shit that had been thrown at us the past 5 years. We had now tried almost everything.

We tried on our own, we tried with the regular OB and the high risk OB, we made a decent attempt with the fertility specialist, and attempted adoption. All ended without a baby. What more could we do?

ALL we wanted was to be parents and it was like parenthood grew legs and kept running farther and farther away from us.

I think the accumulating stress, pain, disappointment, sadness- I think it all caught up with me. The failed adoption news was given to us the same day my dad was taken to the hospital. The stress of both situations made a concoction of chaos in my body and I landed in the ER that very next day with some unknown freak thing that nobody could diagnose or explain.

After that day in the ER, I didn’t want to think about having kids. I didn’t want to try. I didn’t give up for good, but for the first time since getting married I just wanted to take a break. I just wanted to relax, take it easy and not think about anything having to do with trying to have a baby. My soul desperately needed it.

In October, Dan and I sat down to talk about what we wanted to do next. We didn’t want to give up but we knew our options were limited. Adoption was out of the question for the foreseeable future. We were confident we didn’t want to go back to the fertility specialist for IVF and we had exhausted all options with my high-risk OBGYN. There was nothing else they could do for us. So, we decided to try again on our own with no help from anyone.

If i got pregnant, great!

If i didn’t, it was going to be okay.

A few weeks before Christmas, I noticed I was having incredibly vivid, wild dreams. One of those mornings, my eyes flew open as I remembered the dream that I had just had. It was a dream of a pregnancy test with two blazing red lines on it, the kind of lines I had only seen one time before – with Baby Charlie’s pregnancy.

I don’t really believe in dream meanings but that morning I had an urge to look up what my dream meant. So there I was, still in bed, googling the meaning of a positive pregnancy test. The description underneath said successful pregnancy.

NAH, No way, I thought.

About a week later it was time to take a pregnancy test. I let it do it’s thing in the bathroom for a few minutes and then I went to check. I was afraid to look. As I peered over it, I noticed there was not one line, but two…and they weren’t faint. The pregnancy line was pink and I was still 5 days out from my period. I was super early to be getting a positive.

But that thing was POSITIVE.

Holy shit, is my dream coming true?

After the positive test, I didn’t make any phone calls to the doctor like I have in the past. I wanted to see what would happen without any doctor intervention and avoid any unnecessary bloodwork or appointments. If it were a chemical pregnancy, like I have had SO many times, in a day or two the line on the test would get lighter. I was banking on the pregnancy lines going away and losing the baby.

Your HCG levels are supposed to double every 48 hours, meaning the pregnancy line on your test should get darker as the levels rise. Well, patient as I am, I wanted to see what my body was doing and the very next day I took another test. I was stunned. The line was darker.

The day after that, even darker. 

And it kept getting darker until the preg test line was darker than the control line.

At that point, I had a gut feeling that things were going in the right direction.

So, after Christmas, I finally decided to call the Dr. and at 7 weeks we had our first ultrasound. An unusual thing was happening though…I still felt pregnant. My hair wasn’t falling out. I didn’t have loss of pregnancy symptoms. I felt like there was still a baby in there. Normally by 7 weeks, the pregnancy was not progressing properly and/or the baby had already died. So Was I nervous going into our appointment? Hell yea. But at the same time, feeling pregnant was unusually good for me, so I held onto hope.

The Doc turned on that dreaded ultrasound machine. God, I hated that thing. It was always the thing that ended our happiness. But within seconds, there was a beautiful little blob on the screen. I should’ve been measuring 7 weeks 1 day and when she did the measurements it read 7 weeks 2 days. Right on target.

Then, she pointed out the tiny flickering on the screen….it was the little heartbeat. I gasped and I’m pretty sure I said “holy shit” or “oh my God” or something of that nature. It had been a long time since we had had a baby with a heartbeat.

“Everthing looks great”, she said, as she proceeded to print out some pictures and place them in my shaking hand.

I couldn’t believe it. It was growing on target. The heartbeat was there. The baby was alive and well. I had tears running down my cheeks as I left the office. Happy tears.

The weeks flew by.

At 12 weeks we had our next scan. I was closing in on the 2nd trimester and I still felt pregnant so I went into the appointment feeling hopeful, but of course, still nervous as hell.

Dan was by my side and I’m pretty sure had the tech not been talking , you would’ve been able to hear the thumping of our hearts in our chests. She talked to us as she did it, moving along to different parts of the body, taking measurements and doing her thing. The baby should’ve been measuring 12 weeks. My eyes darted to the corner of the screen where it displayed that info and the measurements read 12 weeks 4 days. Right on target.

The tech continued and then asked “Did you eat before you came?”

Yea, I had some Kashi cereal.

“Your baby is very active. I think it likes Kashi cereal.”

We all laughed and in my head I kept saying Thank you God. .

As she neared the end, we noticed she didn’t get up and run out of the room to get a doctor. She didn’t linger too long on any parts of the scan. There were no signs from her that anything was wrong.

Before we knew it she was done and she sent us to another room to meet with the doctor to review the results.

We learned that our baby had no signs of Down Syndrome. There were no signs of anything being wrong. Baby Spangler was active and healthy as far as anyone could tell.

We couldn’t believe it. We left with smiles on our faces and it’s been a really really long time since that has happened. We called our parents and everyone cried.

Despite our good news over the past few months, I am having a difficult time wrapping my head around the fact that this pregnancy could go right. In 3 weeks we have our anatomy scan. I will be a goddamn nervous disaster until that day comes. We thought everything was ok with baby Charlie until we had our 18 week anatomy scan…and then our world fell apart. For me to fathom that all can we ok right now is extremely difficult. The doctors could tell me 1000 times that everything is great but in the back of mind I’m thinking “is it?” We don’t know if the organs are in the right spot yet. We don’t know if the heart is ok. We don’t know if their limbs are the right length or if they have 10 fingers or toes.

The chance of a recurrence of CDH is very rare, 2% they said… but it’s there. The chance of other things being wrong is also a possibility. I guess I am just so accustomed to bad news, that I cannot imagine getting good news. Sad, isn’t it? We’ll find out in 3 weeks though how this baby is doing and I hope the good news keeps coming.

So what did I do differently this time? 

Not much. For one, we had given my body a break. It had been almost a year since I had been pregnant. Maybe I needed it. I also took CoQ10 religiously for a few months prior to pregnancy. It’s supposed to help with egg quality and was recommended for me to take by the fertility specialist and my high risk dr. And lastly , I started taking one baby aspirin daily from the very moment I found out I was pregnant. Who knows if any of this helped but it was worth a shot.

As I’ve looked back on previous pregnancies what’s interesting is that the only 2 pregnancies to make it past the 8 week mark were Baby Charlie’s and this one. They were the only two with no doctor involvement in the very beginning. No appointments. No medicine. No bloodwork. And most of all…NO STRESS.

We had a “let’s just see what happens” attitude about trying again and look what happened.

Maybe that was part of our problem- stress. I know it can wreck havoc on your body and maybe it did.

So here I am, almost 17 weeks pregnant with a baby I never thought we’d have. A baby that is a true miracle. My pants are starting to feel snug and I’m watching my belly grow in the mirror, week after week. I am savoring and loving every single moment of it, even when I’m up at 3am with carpal tunnel pain that won’t go away. Every few days we listen to the baby’s heartbeat on our home monitor to make sure it’s moving and grooving and healthy as can be. That psh psh psh sound of a baby’s heartbeat is still my favorite sound in the entire world.

I feel lucky to be able to hear a baby’s heartbeat again. Lucky to have entered the second trimester. Lucky that Dan and I have gotten the chance to be parents again, with a child all our own. We really thought this day would never come.

My due date is August 20th, the heart of the summer. We are looking forward to that upcoming day when I’m in labor, the day we get to hear our baby’s first cry.

It’ll truly be the happiest day of our lives.

#8

We’re living our worst nightmare. We’ve lost eight babies now. Eight.

In May we started our fertility treatments. My concoction of meds consisted of Letrozole, Ovidrel, Cabergoline, Progesterone, Estridol, Baby Aspirin and Lovenox. In addition to that, I was taking extra folate, extra B12, COq10 and DHA.

Cycle number 1 on these meds didnt result in pregnancy. I tried not to get discouraged , knowing that we could simply try it again.

So we did.

We knew cycle 2 was a success before we even saw the two lines on a the test. Why? My poor husband was getting screamed at  by his wife, the hormonal psychopath. Sure enough, two very faint lines appeared on my home pregnancy test I took shortly afterwards. We waited two days, tested again and saw the lines getting darker. It was a good sign. We were so excited. We thought the fertility treatmeat would work. We thought THIS WAS IT.

I immediately got in touch with my doctor and she told me to start the Lovenox injections right away . I was hopeful it would do the trick.

The following week, first thing in the morning, I was at the office getting blood drawn. My HCG and progesterone levels needed to be good. I spent all day at work with a knot in my stomach, waiting for the phone call that never came. So, I called them.

The nurse answered. I told her my name and that I was calling for bloodwork results. I heard silence for about 30 seconds. Then an “Ok…….” and an “Umm…”   Spit it out lady!!!!  Well, your HCG is an 87. Your progesterone is 20.”  I don’t think my heart could’ve sank any deeper than it did at that moment. I’ve done this 7 times before and I know that 87 is not high. At all. I did the math in my head. At this point in the pregnancy, my levels should be much higher than that.  She told me it didn’t look good but to come back on Wednesday to draw blood again and see what’s happening.

Fuck Wednesday, I know what’s happening.

I was devastated. Completely, 100% devastated. I tried very hard to keep it together for the rest of the work day. After work, I went on the walkway to try to relax. All I noticed were the swarms of kids around me with their parents, laughing, playing, spending time outdoors together. As I watched them, all I I could think was “We’re never going to have that. Never.”   The wind on the bridge wiped my tears for me.

I went home and took anothe home preg test. I wanted to see what my body was doing, right now. I wanted to see for myself if this was going ok (even though my gut was telling me it wasn’t ok.) I hadn’t taken a test in over a week, so the pregnancy line should’ve been a blazing red. It wasn’t. It hadn’t gotten any darker since the last test I took the week before. In fact, it had gotten a little lighter. That means my HCG levels were rising at one point and then stopped. I stared at the test and then started screaming, “Why?!??”, over and over again.  I turned into a puddle. I might’ve punched a pillow too. When you’re that upset, you can’t control it.

Our fertility treatmeant, which we were so excited about trying, which we thought was the answer, didn’t work. I don’t know why. All I do know is miscarriage looms in the near future.  Dan is always more optimistic than me, but even he couldn’t believe this was happening again. He was speechless and when he’s speechless, I’m worried.

My emotional recovery, especially since the loss of Baby Charlie last year, has been tough but at the same time has taught me how strong I am. There is no book to teach you about how to grieve or cope with this kind of stuff, you just have to get through it on your own. I thought the worst was over when Baby C passed away, but it turns out, stacks of sadness just keep getting added to our pile. I know that i’ll Be fine, but I constantly wonder how much more I can take. After hearing that this pregnancy failed, I really felt like throwing in the towel. I wanted to give up. I really did. But, in the back of mind, I kept telling myself: DON’T.

We’re hanging on to a very tiny, almost invisible sliver of hope.

 

OPTION 2

In March, after many failed attempts at getting an answer to my pregnancy issues, my husband and I decided to take the leap and go see a fertility specialist. I was scared. Scared of what they might find. Scared of what they wouldn’t find. But i knew we had to do it. I had this vision in my head of it being a long drawn-out process and of it costing an arm and a leg, but neither turned out to be true. In fact, the whole process has been the complete opposite.

We decided to go see the doctors at Hudson Valley Fertility based off a referral from a close friend who had success there. The first consultation was the scariest because I didn’t know what to expect. I walked into the doctor’s office that day, terrified of what was to come. Thankfully, sitting across from me was the most down-to-earth doctors I have ever met in my life. She was funny. She was personable. Her demeanor put me in an automatic state of calm. She started thumbing through the stack of paperwork I had to fill out about my medical history and we went over that in great detail.

As we were talking, I explained to her that I was upset with the doctor I had last seen because he wanted to start me on progesterone and Lovenox AFTER I was already pregnant and in the 2nd trimester.  I told her that “putting me on those medications in the 2nd trimester wouldn’t……”     And before I could even finish my sentence, she finished it for me.

“It wouldn’t help you.”, the doctor said.

“Yes! THANK YOU!!!” I said. Right then and there,  I knew i was in the right hands. She had reviewed my history, obviously. She KNEW what was best for me. She knew that the previous doctor had been wrong.

She proceeded to give us the list of initial testing that needed to be done on both myself and Dan. Then she said “Based on what we find from the test results, I want to start you on baby aspirin every single day, starting today. I will start you on progesterone prior to pregnancy and I will give you the Lovenox as soon as you get the first positive pregnancy test.   I smiled.

Sounds good lady. Sounds good.

Testing ensued. Dan got bloodwork and a semen analysis done. I had extensive  bloodwork, an HSG test, an SIS test and a biopsy.  For all the women reading this, be thankful that you’ll probably never have to have any of those tests done. You have to put up with the pain of it all and show your lady parts to the entire fucking universe.  It’s not fun. I”m just glad it’s over and done with.

We had to wait until all the results were in before we could schedule or appointment to go over everything. It was torture. My mind was in overdrive. What if they find something wrong and it’s not fixable? What if they don’t find anything wrong? What if there’s something wrong with Dan? What if there’s no other option but to do IVF? What happens if I’m broken?

My stomach was in my throat as I walked into the doctor’s office for the results. I was only in the waiting room for 15 minutes but it felt like 10 hours. Finally, they escorted me into the office. I sat down across from the doctor and she began rattling off the results…

Semen anaylsis, NORMAL. HSG test, NORMAL. SIS test, NORMAL. Dan’s bloodwork, NORMAL.

I started to get nervous. MY GOD, WHAT IF THEY DON”T FIND ANYTHING WRONG WITH ME? WHAT IF WE DON”T GET ANY ANSWERS?

“Now for your bloodwork.” she said. “Your prolactin levels were slightly elevated. Normal is 24. Yours is 26. I”m going to repeat that test today, but I really don’t think it’s an issue.”     Turns out, high prolactin levels can be an indicator of a pituitary gland tumor or malfunction. Because my levels are so low, she does not think this is an issue at all. But they’re retesting just in case.

OK great, so I probably don’t have a pituitary gland tumor. That’s fantastic.

“Your Killer T Cell test came back positive.”   Okkk….what the hell is a killer T cell because it sounds like something I should be afraid of.  “It is usually related to autoimmune diseases but you have had extensive autoimmune testing and nothing has come up. It could be part of your problem but the only drug to help that is usually used for people going through IVF. It’s very expensive and it’s not guaranteed to help.”    Yup, nope, not doing that. If my cells want to kill eachother, then let them have at it.

“And….your biopsy………..” She said.

There it was, that slight hesitation in her voice that indicated she was about to tell me something was wrong.

“You had your biopsy on cycle day 24. Your results came back indicating you were on cycle day 15 and around the time of ovulation.”

WHAT?  Well, that’s not right. That’s not right AT ALL.

Basically, my body is not ovulating at the time it should and/or at the strength it should, nor is my uterus ready for implantation. This means that when i get pregnant, my body is not prepared for it, hence the reason for all my chemical pregnancies and all my early miscarriages. My body just wasn’t ready to handle a baby.

A wave of fear suddenly came over me. OH GOD, WHAT IF THERE’S NOTHING THEY CAN DO.

The doctor proceeded to tell me that there were 2 options. Option 1 was IVF. THe problem with IVF is that it’s not covered by our insurance, it’s almost as expensive as buying a goddamn car, andddd….IT’S NOT GUARANTEED TO WORK.  If I had $10,000 just laying around, I’d be all for it, but that’s too much money to come up with for a procedure that doesn’t guarantee you a baby.  OPTION 2:  Give me Letrozole, a trigger shot, progesterone, baby aspirin, Lovenox, extra Methylfolate, monitor me with ultrasounds to make sure my body is doing what it should, and THEN….hope and pray that this concoction of medications and supplements helps my body prepare for and maintain my next pregnancy.

She asked what I wanted to do.     OPTION 2, doc. Let’s do this!!

So off we go. We are ready for what’s to come. Option 2 is no guarantee either, but there is a better chance of success. It’s worth a shot!

I had to go to the store after my appointment to pick up a few things, and as i walked down the aisles, I found myself smiling, not because they found something wrong with me, but because we have an answer. It feels like a weight has been lifted off my shoulders.

There is an exorbitant amount of stress and fear that comes along with unexplained fertility. I’ve spent years in a constant state of worry because of this. Now that we have an explanation and a reason behind our failed pregnancies, I feel like I can move forward. I feel like we are finally headed in the right direction.

I hope the coming months bring great news. Cross your fingers for us.

 

 

 

 

 

 

ou have a defect in the second half of your cycle.

 

 

 

 

 

 

The answer.

There was a show on tv called Ice Road Truckers: Deadliest Roads. I don’t know if any of you have seen it but I remember it being on quite a few years ago. It documented truckers as they traveled some of the most dangerous roads in the world. These people were being dealt the shittiest cards in the deck… these roads were on mountains, , had no guardrails and were littered with hairpin turns. They had to dodge cars coming from the other direction, falling rocks and boulders, and had to  navigate over steep inclines as Mother Nature wrecked havoc on them. They had to do all of this while hoping and praying one of their tires didn’t slide off the edge, because it was certain if they went off the side of the cliff, the ground below would swallow them whole. It was scary as shit.   THAT is what I feel like our road to parenthood  has turned into. We’re on a fucking highway through hell, with a million obstacles being thrown our way.  The question is: Are we going to fall off the edge? Or are we going to make it? Having a baby is on the other side of our fucking Himalayan mountain, and I don’t know if we’ll ever get to the other side. 

After the birth of Charlie , we were told we could try again when we were ready. October came along and we found out we were pregnant again. My levels were going up wonderfully, as we were excited. The day of the first ultrasound arrived quickly and I remember being  in the office as the doctor performed the ultrasound, waiting oh so desperately for good news. She looked over at me and said “this doesn’t look good Lauren.” The baby was measuring behind and the heart rate was extremely low at 50 BPM. It was the same thing that has happened with almost all of my other pregnancies. As tears rolled down my cheeks, I remember saying  to her “I just don’t understand.”  

Shortly before Thanksgiving, she sent me to see the head honcho of  the OB dept. It was a consultation to talk about if there was anything else they could do for me. I’ve done my research regarding my MTHFR gene mutation and was waiting for the right moment to ask him if he thought it was a contributing factor to all my miscarriages. So I listened to him babble on for a few minutes and then asked “Do you think my MTHFR has anything to do….”   and before I could even finish my sentence he threw up his hands and said “No! Absolutely not! There’s no research to support that it has anything to do with miscarriages.” 

DICK. 

Right then and there I decided I didn’t like the guy. Let me finish my questions, asshole , and be open to the fact that things that you weren’t taught about in Med school might be affecting me. 

I sat there, my eyes burning holes into his soul, but decided to be nice, bite my tongue and listen to the rest of what he had to say. He told me that for my next pregnancy, they would put be on a concoction of baby aspirin, progesterone, and Lovenox injections. I’ll admit, the idea of needing to stab myself with two needles a day didn’t really sound great, but hey, I’ll do whatever I gotta do! I left the meeting excited to try something we’ve never tried before. We were also under strict orders to give my body a break, and wait until I got at least 2 periods before trying again. I didn’t want to wait but I knew he was probably right. We suffered 3 losses in 2018 alone. Yea, we needed a break. 

Well, unfortunately, 2019 hasn’t been kind to us either. Recently, I went for bloodwork because I was getting faint  positives on home pregnancy tests. The Bloodwork revealed my HCG was 2 and  my progesterone was 16.    “You were definitely pregnant” , my doctor said. “But it looks like when you came in for bloodwork, your levels were already going down.”

Another chemical pregnancy.

Sigh. 

Right now, we’re at 7. Seven losses. Not one, not two, SEVEN.  4 miscarriages, 2 chemical pregnancies and a stillbirth. How the hell does this happen?!?

My doctor called on my way to work the other morning and I flat out said to her, with tears in my eyes “I don’t know what to do anymore..”   

She urged me to go for a special test. I forget the name of it but it’ll tell us if my eggs are all fucked up or not. I don’t want to have that problem, but at the same time, it would give us an answer as to why this is happening over and over and over again. 

It’s been years of no answers. Years of trying to have a family and failing every single time. It really crushes your happiness when you see that pregnancy line and are scared to get excited about it because you don’t know what’s going to happen days or weeks down the road.

When does it get easier? When? Haven’t we been through enough? I just wish we could see into our future. It would help us make the right decision about what to do next. Yea…what DO we do next? Give up? Keep trying? Adopt? Don’t adopt? Fertility specialist? What? What’s the fucking answer? Somebody please, tell me the answer.

Please. 

 

Due date.

Tomorrow was the day we were supposed to meet our litle guy.

Tomorrow was the day that we were dreading. Why? CDH kills half of the babies that have it. We didn’t know if Charlie was going to succumb to that fate. Luckily, he didn’t suffer. He didn’t have to struggle to take his first breath. We didn’t have to watch him be put on a ventilator or watch him be wheeled away for his hernia repair surgery, knowing he might not make it out alive. He didn’t have to be a NICU baby and we didn’t have to be NICU parents. He was spared from the ECMO machine, the feeding tubes, the monitors, the needles, the constant revolving door of nurses that would’ve been by his side. We were spared weeks and months of worry, wondering if his next breathe would be his last or if we’d ever be able to bring him home.

I remember hiking after our 18 week ultrasound, right before we found out how bad his CDH was. I remember stopping in the middle of the trail, looking up at the sky, and asking for God to take him soon if he wasn’t going to survive. I didn’t think I had the strength in me  to watch him die in the hospital.   I remember the next step I took, I tripped over a rock and nearly fell. I took that as a sign that God heard me. He must’ve heard me and listened, because just 6 weeks later I was in a hospital bed, giving birth to the most beautiful tiny human I have ever seen. 

Dan and I will constantly wonder what kind of person he would’ve been. What would his personality have been like? What about his eyes? We never got to see them. What color were they? Would he have grown up to be  a firefighter just like his daddy? Would he be silly or serious? A jokster like his father? Probably. Short or tall?  We’ll never know.  I’ll never get to make him his first birthday cake or take him to his first play date. I’ll never get to read him a bedtime story, help him with his homework, or put him on the bus for the first day of school. I’ll never get to watch him graduate or get married or have a child of his own. When he died, we lost our dream of raising a child, of having a family.

I know he’s in a better place now, watching over us.  I’m thankful we decided to cremate him, because if we want to see him, all we have to do is walk over to his urn and say hello. We say hello every single day and I always wonder if he hears us. If I could turn back the hands of time, I would hold him a little longer.  Really, that’s all I want. I would give anything for one more minute….

 

We love you , Charlie. Hope you’re having fun up there buddy.

 

 

 

Grief is weird.

Grief is weird.

     It’s been two months since heaven took our son.

     The day we drove home from the hospital, I cried just thinking about coming home to an empty house without him there. I didn’t want to do it. The first few weeks following his death were the most difficult. I felt lost and defeated, constantly wondering why he was taken from us, but also thankful that he didn’t suffer. Home, which was supposed to be a place of comfort, turned into a place full of sadness. I wanted to be somewhere else, anywhere else, far away. Being home made me think of him and thinking of him was torture. It provoked an ache in my heart that nobody other than people who have lost a child would truly understand.

     After my second miscarriage last year, I fell into a depression for a brief period of time and I vowed to not let myself get to that point again. The second we found out Charlie had passed away, I knew I needed to prepare myself for an emotional war.  I knew that I needed to keep my head above water and be stronger than ever. In the weeks following his death, for every 2 steps forward, I took one step back. I took that as progress, crying a little less each day. It was like was my eyes were a faucet and I was helping myself turn off the tears. Slowly.

     The only way for me not to fall backwards was to help myself. Nobody else could do it for me. So, I made a plan to continue doing the things I love to do. There I was, hiking in the mountains of Virginia one week after giving birth to our beautiful boy. The mountains are my happy place and being there with my husband, hiking desolate trails in a national park in Virginia was probably the best thing I could’ve done for myself. It was calming. It was the best medicine. Then after we got home, I continued exploring. I went on day trips, continued hiking, and even signed myself up for a meditation class. It couldn’t hurt, right? Everything I’ve done, I’ve done for mental clarity, to help heal the wounds. And let me tell you, it has helped immensely.  The most important thing I’ve learned through this grief process is to not lose yourself, because once you’ve lost yourself, you’ve lost everything.

     My heart still hurts, every single day, but as time has gone on, the raw pain and sadness has started to subside. His urn and pictures are on a shelf in our living room so that we are constantly reminded of the beautiful soul we had in our lives for 24 wonderful weeks. Sometimes just looking at his urn brings me to tears, but other times, I smile. Every time I hear the name Charlie now, I smile. It’s been quite a bit lately. I feel like his name is everywhere. There have been several time when I’ve been outside, thinking of him, and a feather has flown in front of me and landed at my feet. There have also been little things that happened in our house, making us question if all of this has happened because he wants us to know he’s still there. I hope he is.

     My post–partum checkup has come and gone. The nurse and the doctor gave me a hug and expressed their deepest condolences. The nurse told me a story about a patient of theirs that had 10 miscarriages in a row. The 11th pregnancy was THE one for that couple, the one that finally gave them the child they’d be hoping for. She said to me plain and simple “You’re going to try again, right?  Don’t EVER give up!” I stared at her and smiled. Of course we are. She went on to say that nobody, not even the best doctors in the world, can know what’s going on in your body every single moment of every single day. What is happening in your body now may not be what’s happening tomorrow or next month or next year. It may be something undetectable to doctors, or something that may resolve itself in time. She’s damn right. Nobody has any friggin idea what going on with me, other than my MTHFR gene mutation. (I have this gut feeling that my  mutation is the cause of our miscarriages. The more research I do, the more it adds up. The more people I talk to who have this, the more I realize how similar our stories are.) The nurses statement resonated with me. Think about it. Your body is such a complex system. How do they know? If you’re healthy, you see your doctor once a year, if that. If you’re not healthy or you have fertility issues, you see your doctor more often. But still, is a 30 minute doctor’s appointment a reflection of what’s going on inside your body for the whole year? No. Not even close. So, like she said, something in my body might change from one pregnancy to the next, and that change might be the change we need for the next pregnancy to be successful. We get a little closer each time. I made it to 24 weeks with Charlie, who’s to say I can’t make it to 40? Doctor’s are convinced that Charlie’s CDH was not genetic, which means it will not repeat itself again. Had he been healthy, they are confident I would’ve carried to term.  So with that said, Dan and I are adamant about not giving up. The next time might be THE time for us. I just hope it comes sooner rather than later.

 

 

Our angel.

        

       Baby Charlie passed away on August 3rd 2018, sometime between 7:30 am and 7:30 pm. His heartbeat was there and strong that morning. I checked it with our heart rate monitor before I left for work. I checked it again when I got home expecting to find his heartbeat easily as I had the millions of times before. I checked for 20 minutes straight. The tears started rolling down my cheeks. Where is he?!? WHERE IS HE?!??? I called my husband and I remember the first words I screamed into the phone were “I can’t find him!! I CAN’T FIND HIM!!!!!!”

      I couldn’t breathe. I was hyperventilating. I was pacing the house, frantic and crying , waiting for my husband to get home from the firehouse. When he walked through the door, we checked for Charlie again. We still couldn’t find his heartbeat. Devastated, we sat there, he held me and I cried.

     Shortly after, we made the call to the doctor. She suggested we go down for an ultrasound to verify. We each packed a bag, we threw it in the car and off we went to NYC. It was the longest hour and half drive of our lives.

     At 12:00am we were admitted to the hospital and they wheeled in the ultrasound machine. I knew in my heart he wasn’t there anymore. Sure enough, my gut instinct was right. He had died while I was at work that day. Our Charlie was gone.

      We waited in a triage room for 7 hours while they waited for a labor and delivery room to be ready for us. The nurses came in and poked and prodded me, hooked me up to machines, took blood, took blood pressure, told us about what would happen next, and left us to sleep. It was 4 am before we started nodding off. It was broken sleep. Worried sleep.

     On Saturday morning our room was ready. It was much nicer than the triage jail cell we were in earlier. As we walked into the room, I stared at the little station they had set up for the baby. It pulled on my heart strings as I knew we wouldn’t have a crying baby to put on there. At 8:30am I was induced.  Here we go. We’re gonna meet you soon Charlie.

At 1:30 I was given the option of getting an epidural. I happily accepted and let them stick my back with a needle. I wasn’t feeling any pain at that moment, but they warned me that it would come on quickly.

        Time slowly ticked by. Our families came down to spend the day with us and that helped ease our minds and pass the time. The nurses and doctors came in and out like a revolving door. Every few hours they’d check me and see if I’d dilated at all.  By 11:00pm, our families were gone and I still hadn’t made any progress.  I was upset that my body wasn’t in labor yet. I was upset I wasn’t feeling contractions. I was anxious to meet Charlie and anxious for it all to be over with as soon as possible.

        Finally, at 3:00am I woke up in intense pain. The contractions had finally showed up! By 5:00am it had gotten so bad that I was throwing up. It took 5 hours of contractions and one push. At 8:23am on Sunday, August 5th, Charlie was born. It was the best and worst time of our life.

     There he was. The baby we had had been hoping for 3 years was here. It was a surreal experience because after going through labor, you expect the baby to come out crying. Charlie was lifeless and even though he had passed away already, he was still the most beautiful thing we had ever seen.

     The doctors had made him out to be some genetically deformed monster but let me tell you, they were wrong. He had a perfect little button nose, one that looked just like mine when I was a kid. As they had suspected, he did have 6 fingers on each hand, but it wasn’t a fully formed finger and it was the cutest goddamn thing ever. His hand was tiny. So tiny. I just couldn’t stop touching it. He had adorable little legs and big ass feet just like his father. His toes. Oh those toes. They were adorable. He had blond peach fuzz on his head and the cutest little red lips.  Sometimes, it looked like he was smiling. Other times, depending on the way we held him, his mouth would open like he was catching flies.

He weighed one pound, so he fit in our hands when we held him. It was amazing and devastating at the same time.

     It’s hard to try and explain that day in the hospital. We were surrounded by family, our parents and sisters made the trip down to meet Charlie and be there for emotional support. There was so much love in that room that afternoon, and as much as it hurt, it was great seeing the grandparents meet their grandchild. Their hearts were broken just like ours but we were so happy they were there to meet him.

      After the parents left, we were hauled off to another room. Charlie came with us. That choice was ours. We could’ve let him go then, but the thought of being in that hospital room without him was painful. We knew we couldn’t let him go until we were discharged. He stayed next to us in a bassinet with a special system to keep him cool. I kept looking over at him, wishing he would move or cry or grab my finger when I held his little hand.

     I was tired of laying in a hospital bed and desperately wanted to go home but it turns out they don’t let you go home when you can’t feel your legs. Go figure. I had to stay overnight to recover. I wobbled with assistance to the bathroom, to the shower, to the bed. My back was recovering from where the epidural went in. Our hearts were trying to recover too. But we knew that would be a lifelong process, not an overnight thing. We knew we needed to sleep, too. I thought I knew what tired was, until that day. When you have a baby you hit a new level of exhaustion, one that makes you loopy, one that makes you feel like you can fall asleep standing up like a horse. I tried to rest but the revolving door of nurses made it difficult.

     We were discharged the following day. We opted to have Charlie cremated so he could be home with us all the time. The funeral owner came in and we signed all the paperwork and picked out his urn. We picked the best they had for the very best son: a white porcelain urn with a Blue teddy bear on it. The guy was taking Charlie and another baby that died at the hospital to the crematory. He was leaving soon.

       It was time to say goodbye. The funeral guy stepped out to give us a few minutes with our son. The tears flowed like faucet water. I honestly don’t think I’ve ever cried so hard in my life or have ever felt such agony in my heart. I can’t even begin to explain the pain we felt in that moment.

      We held him for as long as we could. We stared at him for as long as we could too, in between cascades of tears and “I love you’s”. We didn’t want to let him go.

      Before I knew it, the time had come. The nurse came in and unhooked his cooling system, said she was sorry for our loss, and wheeled him out the door. It was the last time we would ever see him. That thought made me feel weak. I was inconsolable.

      Soon afterwards they came with my discharge papers. I couldn’t sign them quick enough. We hauled ass outta there, grateful to be on the road home and hoping to never have to go back to that hospital ever again. We left empty-handed and it has left a permanent hole in my heart. In a span of 24 hours we had gone through two major life events: a birth and a death. I wouldn’t wish such an experience on anybody.

       Thankfully, we have a huge support system that has helped us get through the last two weeks. Our friends and family (and every in between) have helped us get back up after we’ve been knocked down. I’ll be honest with you. This is,by far, the most difficult thing I’ve ever had to deal with. I have days when i don’t feel like getting out of my pajamas. Other days, I feel good enough to do the things that make me happy. Sometimes, the littlest things trigger a wave of tears. A picture. A memory. A wish that he was still here.

      The day he died a piece of me died with him. A piece of my heart is permanently broken but I’ve got strength in there somewhere. The strength to keep moving and keep living and keep trying. We are going to keep praying for that family we want. Charlie’s up in heaven now and we’re hoping he will be our guardian angel for future pregnancies. We hope that one day, we can tell our son or daughter that they have a baby brother in heaven. Until that day comes, we will hold tightly onto hope.

Charlie,

We love you. We miss you.

You will always be on our minds.

Rest in peace, sweet angel. ❤️

Living nightmare.

We bought a house a few years ago with 3 bedrooms (and an extra room that could made into a 4th, if needed). We wanted the space because we were going to start a family. Those extra rooms were going to be for the kids. 

Years later and the extra rooms still stand empty, void of any tiny humans and filled with meaningless crap and furniture, desperately awaiting the arrival of their tiny young tenants. 

The first room on the right was going to be the nursery for Charlie. We tore down the wallpaper and patched up all the holes. We were waiting until August when I had two weeks off work to rip up and replace the carpet and put on a fresh coat of paint. As soon as we found out Charlie had CDH , we decided we weren’t going to do any extravagent decorating or buy anything more than a crib and the bare necessities, because we didn’t want to come home in November to a baby’s room with no baby to put in it. Given this week’s  turn of events, we aren’t sure if that room will ever be a nursery. We aren’t sure if we even want to paint. We aren’t sure about anything anymore. 

Stillborn, they said. The word sent chills down my spine. 

The high-risk specialist was very nice,  compassionate and left a very good impression on me. But that word, god that word…..stillbirth…. just ruins your soul. 

She sat there explaining how our son is now struggling. On top of everything else that he has going on, his umbilical cord is no longer supplying him with the right amount of blood or oxygen that he needs to grow. He is severely growth-restricted, weighing only half of what he should be at 24 weeks and measuring weeks behind. 

The ultrasound showed that he is in the worst catergory they can put him in.  “In most cases, this severity of growth restriction leads to stillbirth”, the doctor said.  I went numb.

The doctor browsed through my medical history, saying she was very sorry that we may have to go through this after having 4 losses already. She said Charlie could  pass away at anytime. It would happen suddenly. One minute his heart would be beating, the next it wouldn’t be. It could happen tomorrow, 2 weeks from now, or closer to full-term. She couldn’t tell us for sure. She said she has seen a rare miracle, where kids like him make it to term. But it’s rare. Extremely rare.

She told us we have two options. Option 1: They could admit me to the hospital immediately. They would monitor me closely. Once they saw the baby was about to pass, they would perform a C-section and do their best to save him. I would have to stay in the hospital from now until the baby is born. Option 2: I go home and let nature take it’s course.

“If you were my daughter, I would tell you to go with option 2.”, she said.

I don’t know about you but the thought of staying in a hospital bed from now until November was nauseating. I HATE hospitals and there’s no way in hell I was going to spend  my days and nights there. Nope. No way Jose. I wanted to be home.

So off I went. Home. 

Now we play the agonizing waiting game. We wait to see what happens to him. We bought a fetal heart rate monitor a few months ago so we could listen to his heartbeat. We had been listening every night before bed. Now, we are going to be listening all the time, desperately hoping to hear the beautiful thump of his heart beating, making sure he’s still there, still alive. 

The doctor told me to pay attention to his heartbeat and to his movements. If either cease, we have to call her immmediately. I would go down to the hospital. They’d induce labor, give me an epidural and I’d be go through all the pains of delivery. I’d be giving birth to an angel, a thought almost too tough to bear. Going through a miscarriage is hard enough, I can’t even fathom what it would be like to give birth to a human so tiny and so beautiful but whose heart is no longer beating. Dan and I have been pretty tough cookies so far, but I honestly don’t know how we would even begin to cope with that kind of loss. I really don’t. It’s something I don’t even want to think about, but have to. We have to prepare ourselves for a nightmare, but hope for a damn miracle, however minuscule that chance of a miracle may be. 

We’re a CDH family now.

Today, I came home from work to a big box. My husband asked what it was and I shrugged my shoulders. I hadn’t gone on any Amazon shopping sprees lately, so I really i had no idea. Curious, we opened it, and inside were dozens of baby items, clothes, books, etc, donated to us from an organization we joined called CHERUBS, a community of CDH families from across the world. I held up the hat and the onesie and couldn’t help but almost cry.

I wouldn’t wish CDH on any child or any family. EVER. It is truly a living nightmare. But, despite all this, we have found that CDH is not as rare as we thought. We have joined two support groups for CDH and have talked with families from all over the country who have been through or are going through the exact same thing as us. There are 1000’s of families out there and they all bring love, support, and information to the table. It is so damn comforting to hear their stories, to hear about how their children fought against this awful birth defect, to hear them say “everything is going to be ok.”   We are not fighting this alone.

Last Monday we went back down to Morgan Stanley.  We had an MRI, a repeat Echo and a repeat ultrasound scheduled. First was the MRI. The tech came out and made me drink two apple juices and eat two packs of cookies at 8:15 in the morning. For real, lady?  She told me the sugar rush would cause the baby to be really active for a few minutes and then go to sleep. Sleep is what they wanted so that they could get the proper pictures of his diaphragm. So, after putting me in a very loud claustrophobic tube for over an hour, they finally got me out and said to me, “Did you eat breakfast this morning? He was REALLY active! You need to put him in football as soon as he comes out.” That made us laugh. God, i hope we get to put this kid in football. A few hours later we received the results and it wasn’t what we wanted to hear.  One lobe of his liver was now in his chest (along with his bowels and his stomach).  The thing about the liver is this: if a child has CDH and his liver is down (where it should be), his chances of survival are greater than a child who has a liver that is up (in the chest cavity). The liver being in his chest is just making less room for everything else to grow, most importantly, his lungs. I felt defeated. This is bad. Really bad.

The other two tests didn’t reveal anything new. No news is good news, I guess.

Our final appointment of the day was with the pediatric surgeon. As soon as we shook  his hand, we knew we weren’t going to like him. He didn’t have the bubbly personality like most of the doctors we had already met. He was cold. He was TOO honest. His bedside manner was not our cup of tea. He sat there and explained to us that Baby Charlie would need to go on a ventilator as soon as he’s born. Then, if he survives that, he will most likely need to go on ECMO to keep him alive. ECMO is a heart-lung bypass machine that can support our boy for weeks, if needed. It’s basically life support. It comes with it’s own risk of complications, but if it will save his life, we’ll do it. If he responds well to ECMO, they will schedule surgery to repair his hernia and remove all of the organs in chest cavity. The surgeon continued on, telling us that he’s never seen a child with such a severe case survive. He also mentioned that he can’t say with confidence that I will make it full-term. Bedside manner is important people. When someone is very blunt in the way they deliver awful news and doesn’t really display a reasonable amount of compassion, it makes me hate you. I hated him, mainly because I thought he came off as an insensitive douche, but also because I didn’t like what he had to say. Basically, he told us that baby Charlie is going to die.  I can’t tell you how fucking heartbreaking it is to have someone say that to you.  I left his office crying, hoping he’s wrong. I hope Charlie proves this guy fucking wrong. Don’t tell me my son is going to die. Tell me you’re going to do whatever it takes to save him.  JERK.

We’ve been trying to process that news ever since. The support groups we joined have been wonderful in helping us cope. Parents of children with severe CDH reached out to us. Doctors also told them their son or daugher wouldn’t survive and they sent us pictures of their kid, thriving!  Others reached out to tell us that there is hope, but the doctors might be right.They sent us pictures of their angels in heaven. CDH is a spectrum and we really aren’t going to know how Charlie is going to do until he’s born. That’s the scary part. The TERRIFYING part.

In the meantime, we were waiting on a call from the genetics team and the final results from our amniocentesis. The first round of results were all negative, so we were hoping the last part would be negative too. They were testing for over 150 different genetic syndromes, abnormalities, etc. We waited anxiously all week long. Friday came and we finally we got the call. EVERYTHING IS NORMAL!!!!  He also has all 46 chromosomes, with no broken pieces, duplications, or deletions. His genetic makeup is as good as can be. They also tested for a special protein in the amniotic fluid that would indicate if there was a hole somewhere on his body (we did this for his spine issue, as the doctors thought it was protruding through his skin.) That test also came back normal.  HORRAY!

Amnio is not all-inclusive. It’s impossible to test for every genetic issue know to man, so our son could still have something wrong with him, but we’ll probably never know.  The only other testing they can do is after birth and the results take 3 months to come back. FUCK THAT.  The results of our amnio is now in the doctor’s hands. They told us that if there was something genetic going on, his chance of survival would drastically decrease. We’re hoping that this will give him a better chance of survival. We’re hoping he’ll fight harder.

PLease baby boy, fight hard.

 

 

 

 

 

 

 

 

Fight, baby boy. Fight.

We waited 3 long years for you little boy and we are NOT giving up on you.

      After my 3rd miscarriage in January, I switched doctors. I needed someone that was going to listen to me and be proactive in getting us answers. I found a high-risk specialist who turned out to be absolutely wonderful. She listened, thoroughly went through my entire medical history, and then told me to go for blood work in two weeks to test my HCG level and make sure it went down to 0 like it was supposed to. If it had , she said she would order a bunch of tests to be done. She wanted to repeat some tests just to be safe, and run some tests that should’ve been done by my previous doctor but weren’t.

     Two weeks passed and my HCG had dropped to 7. My doctor said that was sufficient enough and we could go ahead with testing. I went to the lab, where they took 16 vials of blood out of my goddamn body. It was so many tests that the phlebotomist actually turned to me and said “I hope you’re ok”. Yea me too, lady. Me too.

      Everything came back normal except for one thing. Turns out, I have two copies of a gene called the MTHFR gene. To you, it’s just a gene. To me, it’s the “motherfucker” gene. There’s no way to know if it played a role in my previous miscarriages, but it could’ve. It  can inhibit a person’s ability to absorb folic acid properly, which is essential for a healthy pregnancy. It also has ties to Vitamn b12 deficiency, which i have.

I had done my research on this gene prior to my miscarriage. I was desperate and was trying to find ANY way to help myself so I switched from your general run-of-the-mill prenatal to a whole-food organic prenatal vitamin that had FOLATE in it , not folic acid. If it helped me, great. If it didn’t, i burned a hole in my pocket but at least i tried.

      The same day that my bloodwork came back, the nurse also called and told me that

my doctor wanted me to go back to the lab and repeat a test.

“What test?”, I asked.

“Your HCG level”

“I don’t understand. Dr. H  just checked it again a few days ago with all the other bloodwork results. Why does she need me to come in again? This is ridiculous”   I was irritated.

“She just wants you to repeat it because your HCG went up to 12.”

     I was baffled. Why the hell do they want me back again? Have they not jammed my arms with needles enough? How can it be going up? It doesn’t make sense! There must be some mistake.

     But as the doctor ordered, I went back a few days later, got the bloodwork done like an unhappy little camper, and then called that afternoon for the results.

     The nurses next words buzzed in my ear. “Hey Lauren, congratulations, your HCG went up to 500.”

“500?!? What the hell?  I’m pregnant?!?”

“You’re pregnant!”, the nurse said.

Holyyyyyy shit.

     I didn’t believe them. I honestly didn’t. I went home that night, desperate to see if it was true. In between smiles and tears, I asked my husband if it was possible. He just shrugged his shoulders and told me I should take a test. I scavenged the bathroom closet desperately looking for a pregnancy test. I knew I had one somewhere but I couldn’t find it so I hauled ass to the store on my way to work the following morning, peed on a stick in the bathroom (yea i know, i’m not proud), and waited impatiently for 2 whole seconds before the blazing positive showed up on the test. It was true. The doctors weren’t liars. I was pregnant again.

     Completely shocked,  I went back for more bloodwork a few days later and my levels were over 3000, the highest it had ever been in any of my pregnancies. The nurse told us everything looked great and all I kept thinking was that nobody had ever told us things looked great. Those words were so nice to hear.

     My first ultrasound was scheduled shortly after. She wanted me in early for dating purposes because we had no clue how far along I was. Given our history, we were nervous wrecks. I was expecting everything to go as it had the 3 times before. We would go in.We would be told there’s no fetal pole or no heartbeat. We would be told the baby was measuring behind, just like it always had. The ultrasound tech stared at the screen and spent what felt like an eternity pushing buttons. Then, she printed a picture. I glanced at my husband with eyes that said “Wow! Nobody has ever printed us a picture!”

      The tech wasn’t allowed to tell us how far along I was (which I think is just plain stupid) but she pointed to a tiny date in the corner:  6 weeks, 5 days. We stared at the a tiny speck on the ultrasound picture for what seemed like forever. There it was. Our little bean who surprised us all. We couldn’t stop smiling.

      Over the next few months, I had a few ultrasounds and the baby continued to surprise us all. His heartbeat was a strong 165. He was growing right on target. We were happy as pigs in shit and at the same time couldn’t really believe that this was actually happening for us. For the first time in 3 very long years, we had made it into the 2nd trimester. My belly was growing and it was the most beautiful thing I had ever seen in my life.

      Our happiness and joy lasted for 18 wonderful weeks. Then last Tuesday, our entire world came crumbling down on us. I had my anatomy scan. We were nervous but excited at the same time. We were going to find out if we were having a son or a daughter. We were  also going to find out if anything was wrong. All i could think about were our good friends who found out that their daughter had a major heart defect at their anatomy scan. They brought us into the ultrasound room and the tech began. She moved through his body rather quickly, telling us along the way what body part she was looking at. I tried to decipher what blob was what, but its really hard to figure that out when you’re just  a regular human and not a trained professional. It was amazing to see all his features and how much he had grown since the last ultrasound.

     Then…. she stopped, lingered a little too long on a blob on the screen and said to us, “he has 6 digits on each hand.”  She explained that they see it pretty often and it usually runs in families, but neither Dan or I could think of anyone in our families who had such a thing. That’s when the panic and worry started to set in.

      The tech continued on for a few more minutes and then lingered again around his heart.

“I do have one concern. I don’t see his stomach”

:You don’t see his stomach?” I said in a panic-stricken voice. “Well where is it? Is it not there at all or is it somewhere else?”

“It’s there. It’s just not where it should be”she said. “I’ll be right back. I’m going to go get the doctor”

    Dan and I have been through enough of these scans to know that when a tech hustles out of the room to get a doctor, the news that follows is never good.

     I think at that second my eyes welled up with tears because I knew something was very , very wrong.

     30 seconds later the doctor was in room, telling us our son had something called a Congenital Diaphragmatic Hernia, a condition as rare as cystic fibrosis and that cause a multitude of issues, including breathing problems, feeding problems and even death.

    “I’m going to send you to the very best. I’m referring you to Columbia. They will know much more about this diagnosis and will be able to help you much more than we can.

      One week later we were at Columbia. They repeated the anatomy scan which took two long agonizing hours to complete. They were extremely thorough. Afterwards, they brought us into a conference room to discuss their findings. The doctors explained that he did indeed have a severe left -sided diaphragmatic hernia. They use a lung to head ratio as a guide for how severe the hernia is and what the outcome will be after birth. The lower the number, the worse it is. They wanted to see a number above 1. Our son’s was 0.4. His left lung is severely underdeveloped. His stomach and some of his intestines are up in his chest cavity. Those organs are pushing his heart to the right side. The y also use a growth scale to determine how big he is which also plays a role in CDH patient’s survival rate.  They wanted him to be above 10%. He is 2%.

     I was already crying buckets as they told us all of this. The room got silent for a moement and then they told us that they had other concerns.

     You’ve gotta be fucking kidding me.

     His profile was off. His upper lip is pronounced, enough for the them to notice it. He also has an issue with his spine. His tiny little tailbone looks to be protruding the skin or close to it. The 6 digits on both hands is a concern. They think he may have a heart abnormaility. He’s is small. Very small.

“We think his CDH along with all these other findings are a cause for greater concern. We highly suspect that this is all a result of a genetic issue.”

      I felt dead inside. I did. My heart shattered into a million pieces. The family that we’ve been dying to have for  years was finally happening and now these people are telling me my son will probably die and has so much more going on. Where the hell is GOD right now? WHERE THE FUCK IS HE?!

       They kept throwing information at us but we were in a fog. I couldn’t think straight. I couldn’t focus on anything. I just wanted to get the fuck out of there. NOt because I was mad at them but because I wanted to cry and scream and I knew that I’d look like a lunatic if i did it in front of them.

      They sent us home shortly after that and we spent the rest of the night in an emotional nightmare.

      We got a call shortly after we left the hospital that they wanted us back the following day for an echo of the baby’s heart and an amniocentesis. So we made the trip down there again yesterday.

     The amnio was done to reveal any genetic disorders that he may have. They can test for hundreds of them. A geneticist told us in private that she suspected he had an extremely rare genetic condition called Pallister-Killian’s syndrome, which would cause severe developmental and intellectual delays on top of the CDH. She said it was the only syndrome she could think of that tied all of his issues together and that we should have the results of that test and a few others within  a day. She sent us down to the procedure room, where they prepped me,stuck a needle the size of Texas into my belly and took out 40 CC’s worth of amniotic fluid. I was watching the fluid fill the tubes, amazed at how much they could find out from some watery looking liquid. Our future, our son’s future, was sitting in those tubes. It terrified me.

     After the amnio they sent us down to get the echo. For an hour we watched our son’s heart on the t.v screen as the doctor performed the scan. She was silent. I was es expecting horrible news. Then finally, she got up, turned on the lights and told us that his heart, as far as she could tell,  did not have any major defects. He had four chambers, all his valves, and everything seemed ok. The problem is that because his stomach and  intestines are up there, his heart is squished, and she couldn’t see everything she needed to see. They want us back in 2 weeks to repeat it.

     We left Morgan Stanley yesterday feeling slightly relieved that there are no major defects with his heart. It was the only good news we had gotten in a week.

     This morning at work, I attached my phone to my hip, anxiously awaiting the call from the genetics team. At 1:30 my phone rang. The first round of testing was back. To everyone’s surprise, he doesn’t have Pallister-Killian’s syndrome. He doesn’t have Down’s Syndrome. He doesn’t have Trisomy 18 (Edward’s Syndrome) or Trimosy 13.  He has all 46 chromosomes and they didn’t see any issues with any of them. I think I actually smiled. A tiny itty bitty smile. A wave of relief came over me and I immediately picked up the phone to call my husband. He was just as happy as I was.

     This doesn’t mean we’re out of the woods. The second round of testing will be back within 2 weeks. They’re digging deeper into less common genetic issues to see if he has any of them. So we’ll see what happens.

     In the meantime, we have to take this day by day. We have to hope that our baby boy will be born strong in November. We hope that he will beat the odds.

      I can’t even begin to tell you how overwhelming this is. It so hard to sit there and listen to doctor’s tell you that your son might not make it. It is even more difficult to sit there and listen to them suggest, over and over  and over again, that you should think about terminating the pregnancy. How could we? Do they not see what we’ve already been through? Do they really think that we’re going to give up on him? Even if he had a 1% chance of survival, he could be that 1%. He could live. We can’t give up on him now. I don’t think we could ever give up on him. He’s our son. Our beautiful son. With a beautiful beating heart and a beautiful face.

***.       I started this blog years ago as a way to vent about my miscarriages and find comfort in the words of others. I expected to not have to write again, but it seems that  i’ll be continuing this blog into parenthood. WRiting about CDH has already opened a lot of doors. We have gotten in touch with other families who have children with CDH and we got to hear stories first-hand. Thanks to our loving families, especially our parents and siblings, who have been by our side since day 1. Thanks to our wonderful group of friends who have checked up on us and have also been by our side through it all. To the rest, just know that your thoughts & prayers, your texts and phone calls do not go unnoticed. We love of all you and thank you for going through this journey with us. We really couldn’t do it without you.*****