Ari’s Journey Earthside {A Story of Down Syndrome}

by mamabearbri on September 12, 2013

Ever since I can remember, I have known that I wanted a natural birth.  My mom had me naturally and presented a positive outlook on birthing and our ability to birth un-medicated, as women have done since the dawn of time. Through the years, my image of birth began to look, more specifically, outside of the typical hospital setting.

With the help of an extremely informative and wonderful movie, “The Business of Being Born,” my husband, Tim, was on board, solidifying my decision that this was the best option for us.  We researched and found the only freestanding midwifery center in Colorado and, with great anticipation, got signed up for our March birth.

My pregnancy progressed normally, though I had a high HCG (pregnancy hormone) level right off the bat and was asked to have an early ultrasound at 8 weeks to see if I might be carrying multiples.  Tim and I were relieved to find out that wasn’t the case as we didn’t think we were up to the challenge!

Because of the high level, I was tummy sick all the way to 16 weeks, losing weight in the first trimester. Thereafter, I began to put on the weight–one lb. over the suggested maximum weight gain by 39 weeks.  At 12 weeks, we traveled to Greece on vacation and dreamed of our baby, spending time finding the perfect Greek dress (we were convinced we were having a girl).

Our 20 week ultrasound rolled around and we were so excited to find out the sex for sure and to get confirmation that our baby was healthy and growing properly. When the doctor announced that we were having a boy, the look exchanged between Tim and I was priceless…something I will never forget.  We were shocked, but so excited!

The rest of the ultrasound went perfectly and showed a very healthy baby.  The weeks rolled on, taking what seemed like a lifetime.  Our baby, who we decided would be named Ari, which is Hebrew for “Lion,” continued to grow and get better at his acrobatics!  I savored the special moments with him in my tummy, spending lots of time sitting in the big comfy glider in his nursery, dreaming of what it would be like to have him in my arms!

From our birthing classes I knew to expect a slow early labor, even days long, so when I began having more regular contractions (about an hour apart and fairly painless) in the middle of the night on March 13, I thought little of it.  Of course I hoped it was the real deal but I didn’t want to get myself too excited and instead tried to sleep as much as I could . I decided I would reassess in the morning.

When I finally got up for work, having slept very little all night, the contractions slowed down, as I had anticipated, so I decided to go to work and see if anything changed through the day.  Indeed, around 10 am, the contractions got closer together, every 20-30 minutes or so, and gained intensity.  My coworkers kept telling me go home, but I really didn’t feel the need to.  They all decided we would go to lunch as it might be my last one before the birth of my sweet boy.  Through lunch, the contractions were painful enough that I needed to stop talking through them.

Luckily, I was leaving work early that day for a planned check up with the midwives.  I checked in and told the woman at the desk, also the teacher of my birthing classes that I thought I was in labor.  She asked me a few questions and I took a seat in the waiting area.  As I closed my eyes and held my seat through the next contraction, I felt eyes on me from the front desk.  When it let up, she was staring at me with a look that said “oh, you weren’t kidding!” and quickly offered me a seat in one of the back rooms–I was probably scaring the others who were waiting.

I was seen for my appointment by midwife and owner, Tracy. She checked my cervix and found that my baby was very low and I was very effaced.  I don’t remember how dilated I was, but I don’t think it mattered.  From how low he was, she suggested that the on-call midwife Laura would be seeing me that night or she, herself would see me when the shift change happened the next morning.  She told me to get something to eat and to try to rest up as much as possible.

I went home around 4 pm and told Tim what was happening.  I sat on the wood floor in our living room, where a patch of sunlight was beaming in through the window, and soaked up the warmth while my contractions gained in intensity. I was so excited that this was really happening and that we would get to meet our son shortly.

He had been very active in utero and I felt so connected to this amazing being inside of me. I would often lie in the bath and cry watching my belly move and tell him I couldn’t wait to see him, but that he should take his time if he needed it.  I had been a little worried that I would go past the 42 week mark and not be able to deliver at the birth center, as is their policy. Now, I sat in the light of the descending sun, one week before his due date and felt thankful he was ready to come into the world.

Tim decided to pick up some Chinese food and I tried to take a nap while he was gone.  It wasn’t happening.  The pain was increasing steadily and I didn’t feel good lying down.  I needed to sit through every contraction for the rest of the night.  We went downstairs and watched The Hangover 2, a terrible movie.  Luckily, I barely made it through 10 minutes before we needed to begin keeping track of times between, and length of contractions, which we used a phone application for. I tried to eat some food, but I didn’t feel hungry or interested in it at all.

The pain was steadily increasing but the contractions weren’t very long and were too far apart to call the midwives.  We did call the on-call midwife, Laura, and give her an update so she knew that she would probably be seeing us soon.  She suggested that I try to slow everything down so I could get some rest.

She said sometimes taking a bath will calm the contractions.  I got in the bath and had some of the worst contractions yet, needing to grip the sides of the tub to get through them.  I couldn’t relax and lay back and nothing was slowing, so I got out, which was extremely difficult.  I remember standing up being just terrible.  Every time I stood, I would end up falling forward into a wall or to the floor to get through the contractions.

The rest of my time at home was spent in the baby’s nursery on the big gliding chair.  Tim, who was tired and not feeling well (he had a cold), turned out the lights and laid (layed? lain? :)) on the floor.  We decided that we would try to rest between contractions. I was able to rest slightly and the contractions started to space out a bit, but each one was still very painful.  This is when I remember letting out the first loud moans.  I got to a point where I was frustrated at the timing not lining up just right, because I felt like we should go to the center soon.

We turned the lights back on and suddenly; the contractions began lining up with the exact correct time.  We were supposed to wait for the timing to line up for a solid hour, but after 30 minutes, I said I thought we should go now.  I told Tim that I thought I was in transition (the worst contractions, right before pushing), and if it wasn’t transition, then I didn’t think I could do it!  We called our midwife and doula and got ready to go.  Getting out of the house and down the short walk to the car was one of the hardest things I have ever done!  I had to stop and bend over several times…good thing no neighbors were around to witness it!

I labored loudly all the way to the birthing center and was greeted at the entrance by my doula, Amy. I was happy to find out that I was already 8 cm dilated and was relieved to be able to get right into the birthing tub after I was examined.  The water felt fantastic, but of course my focus was on getting through the contractions.

Ari3

I felt the urge to push very soon after getting in and was encouraged to do so.  Amy, Tim, and Laura were all such amazing supports for me, telling me how strong I was and what a fantastic job I was doing.  Within minutes, the top of Ari’s head was visible.  Tim got in the tub so he could help support me and help to catch his son.  I don’t really remember the last push, just being handed my baby by my midwife and my husband.

I’m at a loss for words when trying to describe seeing my son for the first time.  I can’t convey the joy and love and amazement that comes from seeing the life you have connected with for 9 months materialized into the world, taking his first breath.  He reached up his straightened arm and pressed his hand into my chin and let out a big cry and I couldn’t quite believe that this was happening.  I felt stronger than I ever have; so accomplished, feeling that if I could do what I just did, I could do anything!

Ari2

Ari William Hochman

Born on March 15, 2012 at 2:21 am

5 pounds 7.5 oz, 18 inches

Ari6

Tim eventually cut Ari’s cord and Ari was taken to the hall for a weigh-in.  He was very small; something the midwife took note of even before he came up out of the water.  She was concerned that he may have trouble recovering from labor, but he had done just fine.  She did say she was going to contact his pediatrician to see if we should go in that day just to be safe.  We hung out on the bed and attempted our first latch…he did okay!

Ari5

Tim and I talked about the fact that he looked different than we had expected.  We had assumed Tim’s genes would be prevalent, but he looked just like me as a baby, blond and blue-eyed.  Tim said he thought his eyes looked funny, but I said that newborns always look different and that he was fine.  I thought nothing more of it and I thought he felt the same.  He went to the other room to lie on the couch and try to rest, while I stayed with Ari and ate a yogurt and a bowl of oatmeal.  At some point, our nurse took Ari to the end of the bed to take all of his measurements.  Everyone seemed very quiet and I assumed it was just because it was early in the morning after a long night.  The water was being run in the bathroom so Ari and I could have our long-awaited herbal bath before going home. Unfortunately that never happened.

I remember everyone leaving the room and then Laura, our midwife and Melissa, our nurse; returning with Tim and telling us they needed to go over some things with us.  Laura began by saying that they had found some things while doing Ari’s checkup.  His ears were a little low, his fingers a little short, he had a gap between his first two toes, single palmer creases on his hands.  I listened in a daze, wishing she would get to the point, not having a clue what that point would be.

Before she got to it, Tim interrupted and said, “does he have Down syndrome?”  I was shocked to hear him say it, like he had been suspecting it all along.  I found out later he had gone to the restroom after mentioning his eyes to me, and googled images of babies with Down syndrome.  I couldn’t see anything different in him, so I was taken off guard. Laura answered by saying, with tears in her eyes, “Mama, I’m not telling you that your baby has Down syndrome”, and explaining that only a genetic test could confirm that, but that the markers they found all point to this being the case.

Both her and Melissa cried and tried to comfort us by telling us that he was going to be the most loving and wonderful child.  I don’t actually remember her saying this, but I talked with her many months after and she recalled the events of the day with me.  They told us that we need to be transferred to the hospital because he would need to have his heart checked and that an ambulance would come to transport him in the warmer. I don’t remember crying, just staring into nothingness and feeling completely numb except for the burning knot in my gut.  The ladies left the room and shut the door and Tim and I hugged and cried.  I remember very clearly that he drew me into a hug and he said to me through his tears, “I love you so much.”

The ENT’s entered with a cart to take Ari out in.  The next shift had just begun, so the owner, Tracy, came to help us get to the hospital.  Tim and I were to drive over separately while Ari went in the ambulance.  I remember Tracy saying how handsome Ari was and I feigned a smile and didn’t go to him before he was wheeled away.  I didn’t recognize him as mine at that moment and it felt so awful.  We drove over in silence (or did we talk?) and I sat in a wheelchair at the hospital entrance while Tim parked the car.

I picked up my phone to call my mom, who had been waiting anxiously ever since Tim texted out a picture of our new family after the birth.  It was the hardest phone call of all that I had to make, but she was the first person I thought to call.  I needed my mom!  She answered excitedly and I told her we were at the hospital.  She asked why and I told her they needed to check his heart because they think he had Down syndrome.  She was in disbelief but told me that he was going to be okay and that she would get off work for the day and be over to see us as soon as possible.

We were directed to Ari’s room in the NICU and I was propped up in a chair by one of the nurses, who then handed me my boy, hooked up to a million wires.  He had been lying under a warmer in just a diaper and she said he was cold so I should try holding him skin to skin.  She helped tuck him inside my shirt and told Tim and I to try to get some rest.  She turned off the lights and closed the door.  I remember closing my eyes and leaning back in the chair, willing myself to sleep.  I was convinced that when I woke up, this nightmare would be over, and I could go back to the time before he was born.

Tim sat in the chair off to the side of me and we were quiet for a long time, though I don’t believe either of us slept a wink.  I don’t know how much time went by, but the nurse came back.  They had found a room for us to sleep in that wouldn’t cost us anything, but it was quite a ways away.  We decided to leave Ari for a short bit to try to rest.  Tim wheeled me to our room and we each took a hospital bed and curled up into balls.  I began to fall into sleep, but Tim was sobbing and I couldn’t sleep without trying to comfort him first.

I curled up behind him on his bed and we cried hard together.  He told me that he did “not want this.”  He didn’t want to be a “special needs parent.”  I said I didn’t either, but what could we do?  He told me his heart was broken and it broke me to hear that.  We have never gone through something so emotionally trying and I hope we never will again.  I had thoughts in that room, thoughts I don’t like to admit.  We felt at times that our life was over. But I told myself that he was my baby and I loved him, even if it felt like he wasn’t mine, or at least he wasn’t the baby I had expected.  I told Tim that he was just a baby and he needed his parents.  All we could do was be there for him and love him.

My mom arrived, and with her arrival, she brought an instant love for her first grandbaby and a positive energy that I was sorely in need of.  She had been focusing all her prayers on Ari’s healthy heart and arrived just in time to sit with me through his exam.

Luckily Ari’s heart only had some minor concerns, nothing of which needed to be dealt with right away, though he did have low Oxygen and was jaundiced.  We ended up staying in the hospital for five days, everyday melding seamlessly into the next.  With no windows in the NICU, it truly felt like an eternity.  There are many details I could go into, but I will sum it up.

We had family and friends visit and tears shed, lot of them, but there was such an outpouring of love in that place as well. Once my dad and brother arrived, there was a moment when just my immediate family was in the room.  My dad said a prayer, the gist of which was asking for Ari to have a great, healthy, happy life and to bring light to ours.  We all cried big heavy sobs and bonded as a family like never before. It was a moment I will never forget, and I am sure my family feels the same. I believe the grieving was a very necessary part of our experience and inevitably led to healing.

We got the final word on his genetic test results and though we were expecting it, it was still hard to hear.  We also had hoped he might have Mosaic Down syndrome, where only some of the cells are affected, since he didn’t show all the characteristics one might normally see in a baby with Down syndrome, such as low tonality.

One of the first mornings I recall, I was holding Ari after a feeding, I was in the NICU room alone with him.  I sang to him and cried.  I whispered to him that I was sorry. I was so, so, sorry that I couldn’t give him a better life.  Tim came in shortly after and found me crying.  Most of the time until then, I had kept on a brave face to help support him in his sorrow and it seemed like that morning the roles reversed.

Of course they continued to ebb and flow as the weeks went by.  It was one thing I think we both took from the experience that we were able to hold each other up when the moment called for it.  We grew stronger as a couple in those first trying days.  By the end of the five days, we were more than ready to go home.  I was convinced that once we got home, we could find a way to get on with our lives.  We finally got cleared to leave and my brother came to help us pack everything up and get us home.

Things definitely started to get better once we were home and able to get in a better routine.  I spent one feeding a night in Ari’s room, to let Tim sleep, and I usually fed him his bottle with one hand, propped the pumping cones up on my legs and used the other hand to flip through the pages of the book “Gifts.”  I would usually be sobbing, sad, tired and in a generally bad way, but I made it through to the other side eventually.  Those first weeks were the absolute hardest of my life thus far.

I remember sitting on our bed holding Ari- I can’t recall exactly when, but I started on again about how sorry I was and that he wasn’t going to have a very good life, when it hit me– he was going to love his life! And we were going to give him every opportunity.  He may not have the exact life that was in our heads, but it wasn’t about us anymore.  It was about him and his happiness.  99% of adults with Down syndrome report being happy with their lives.

I can’t imagine that number would be anywhere near as high in the general population.  This was just the beginning of my acceptance of our situation and the rest of our story is still unfolding.  What I can say right now is that I couldn’t love my son more if I tried.  He brings me joy tenfold and brightens my days.  I truly believe that he will do great things in his life; he has already given my life so much more purpose.  I am not the same woman I was one year ago and I am thankful for every bit of it.

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