Posted on by walkingintheshadowlands

Who is Ethan?

His Dad: His mom already wrote a wonderful post about him, but I also want to share some about who Ethan is to me. (I use the present tense because we strongly believe he is still alive; he just is not with us right now). One of the many tragedies of this loss is that there are so many ways in which we do not know Ethan because he was with us for such a short period of time. The first couple of months of an infant’s life consist mostly of eating, sleeping, and growing. Many personal characteristics do not begin to reveal themselves until several months down the road.

So, knowing Ethan involves mining bits and pieces from the very beginning because it is as much about what he means to us as who he got to show himself to be. Thus, I go back to that summer morning when my wife sat me down with tears in her eyes and told me she was pregnant. The tears were there because we had not yet decided whether we wanted to have a fourth child and so it was a shock for her to be pregnant. But even if we had not definitely decided, God obviously thought we needed more children in our family, and life ultimately is His domain, not ours. So my wife made an appointment with her obstetrician to confirm the pregnancy.

We went into that appointment expecting the same drill we had experienced 3 times before: seeing a tiny blob on a gray screen and wondering afterwards whether it is a boy or a girl. Except, this time it was anything but conventional. This time the ultrasound technician said “There are two sacs there.” And my wife responded, “You mean, like an echo or something?” And the technician said, “No, honey, as in two babies.” At that moment, both my wife and I apparently had priceless shocked looks on our faces because the technician told several people about it later. We did not really know what to say. I felt a little lost for a second, and then my next thought (which I did not articulate) was “We are going to need a bigger house.”

The next little bit was spent adjusting to the idea that we were going to have twins. After the initial shock, there was unbridled joy, tempered with a little trepidation about whether we could handle two at once. Were we ready? Of course not. Were we going to give everything to try to be ready? Absolutely.

Shortly thereafter, we made the decision that we needed to get a bigger house, and we needed to try to move before the babies were born. We also concluded that, if at all possible, the new place needed to be in the same neighborhood because we liked our church and our first child was just starting kindergarten at the local public school, which we also liked.

This was no small decision given the logistics it entailed. I will not get into all the hassles we endured in getting our house ready to sell while trying to get ready for the twins. What needs to be understood is that it was not easy, but that it ended up working out better than we could have imagined.  Moreover, looking for the right new house actually ended up being fairly easy, but only because somehow that particular house stayed on the market long enough for us to have a chance to get it. So, in both the selling and buying it seemed God had His hands under us throughout our situation.

Looking back on it now, I realize that was the last “easy” part of our lives. After that came the birth of the twins. My wife has vaguely alluded to the circumstances involved in that event. I will not add much more here because I do not want it to distract from the main purpose of this post. I will just say that they were born in the back of a moving ambulance, and Ethan was born breech. And yet he was okay.

What I think that says — and events yet to come would confirm this to me — is that Ethan is a very strong person. Yes, he seemed very fragile in appearance, but he has an inner strength nonetheless. He wanted to live, and God wanted Him to live too.

My wife also has already mentioned that Ethan struggled from the beginning to rest comfortably and to gain weight. We did not find out for a month why that was, but we knew something was amiss. Ethan would sweat sometimes. He would let out high-pitched screams. He often would get upset around 9:00 at night and need to be carried around for a long while to be calmed. To me, it seemed like he was in pain. Once his heart defect was diagnosed, the cardiologist assured us he was not really hurting, but I honestly could not square that information with what I saw.

We had to give Ethan supplemental bottles after every feeding. That was my task, and as difficult as it was — because he really did not eat much of them and he choked on them a lot — I would not trade those memories for anything. I see now that those feedings and the times I spent walking him around while patting him hard on his back as he screamed were my real “Dad time” with him because they were my chances to pour love into him. He could not understand it when I would tell him it would be okay and that I loved him, but surely he knew it all the same from those actions.

As my wife said, in his quiet moments Ethan was contemplative. His blue eyes could look right through you, just like his mom’s. After a little while he was so small compared to his twin brother, but you could never forget he was there. Holding him when he was quiet was a dream — so precious, so cute. You tried to remember that during the other times when it seemed as if he would never be quiet again.  He was the better sleeper of the two once he got to sleep — very peaceful.  And he did love being with his brother.  We like to say that Noah looked out for Ethan from the start because he prepared the way at birth by going first, and Noah’s name means “comfort,” which I think is how Ethan felt around Noah.

Those are the actual memories.  And then there are the imaginings.  We instinctively imagined more about what Ethan would be like than Noah because Noah was already growing before our eyes.  We kept wondering whether Ethan would be more like Noah after his heart surgery.  Would he become a big baby?  Would he stop being quiet and introspective and become super-active?  Would he be a late walker? Would he have more health problems? The answers to these and so many other questions painfully elude us.

What I do know, beyond a shadow of a doubt, is that although the length of his earthly life was a wisp compared to most others, he etched a deep and permanent mark in our hearts. I will admit that sometimes I worry that the passing years will erase the precious details of him from my mind because we had so little time with him, and then he will be completely lost to me.  But after a while an adamant assurance overtakes those fears.

No, I will always remember his strength.  I will always remember his peace.  I will always remember that he taught me about the true patience love requires. Ethan was not an echo; he is our little boy with a big heart.  That heart had a large hole in it, but it was nothing compared to the hole his absence has left in ours.

Posted on by walkingintheshadowlands

Meet Our Ethan

His Mom: Before we get into posting about grief and loss and the bigger picture, we want to introduce you to the little boy we refer to as “our little caboose,” Ethan Walter Jones. He is our fifth child. He has a twin brother, but he was the second to be born. Known as Baby B for several weeks, he was the baby up underneath my ribcage, closest to my heart. He spent pretty much the entire pregnancy in a transverse position, so his head was on the left side and his little bottom made a lump on the upper right side of my belly. There are a few extra stretch marks right there, where I patted his little heinie before I even met him. The twins’ birth story is complicated, and I don’t want that to be the focus of this post. Suffice it to say, he was born vaginally in a breech position with no pain medication. This was a little rough on both of us (understatement). My first glimpse of him scared me – he was a little blue and quiet. He spent about half a day in the NICU before being released to my room, with regular blood sugar checks for 24 hours. He was 3 oz bigger than his brother, and his hair was a fuzzy, reddish blonde. His head seemed small to me but the doctors assured me it measured fine. He liked being swaddled, and both boys preferred sleeping together in one bassinet.

He had difficulty nursing at times, and because of the low blood sugar levels, he received supplemental bottles to start. The supplements continued after he did not gain his birth weight back appropriately. Eventually, we found out that his feeding and weight gain concerns were due to a heart defect. At his one-month-old checkup, our pediatrician heard a heart murmur and got us into the cardiologist the next day. I held his tiny arms while they did an EKG and an ECHO and cradled him close as he was given a diagnosis of ventral septal defect. Again, we might write more about this later, but it was only one part of his story. His feedings would tire him quickly – both nursing and taking a bottle left him sleepy and dribbling milk down the sides of his mouth. He required a bib with every bottle, but he never did have any real acid reflux symptoms. He also never had baby acne – the only Jones child that can say their skin was clear at 6 weeks of age.

Ethan loved swinging in the old creaky baby swing we got for $25 at a consignment sale the week before our oldest was born. He wanted to be swaddled and didn’t wiggle out like his brother. His eyes were deep blue – the color where you can bet they will stay blue. He was a fussy baby – spending so much energy eating tired him out quickly and we suspect there may have been something else bothering him. His cry was higher pitched and easily identifiable to me. We spent a lot of time bouncing, walking, shushing, and rocking. He liked to be firmly patted on the back. I would swaddle, pat, and rock while singing his favorite song, “Twinkle Twinkle Little Star,” but his daddy would pat his back as Ethan was laid over his shoulder while walking around. His older siblings would bring him “the sleep sheep” when he cried – one of those stuffed animals that was supposed to help soothe babies to sleep. His oldest brother swore that Ethan loved the sleep sheep much, much more than his brother.

During the infrequent periods where he would be quiet and alert, he would stare at your face with those deep blue eyes, looking like he was studying every detail of your face. I said that his brother had an inquisitive look but that Ethan was studious. Both observant but with different tones, if that makes sense. They each loved to look at the blinds in their room, just behind the changing table. I guess the contrast made them visually appealing. I would kiss his tiny feet while changing his clothes. He also had a sweet little button nose perfect for kissing. One of his ears bent over a little at the top. His right eye didn’t close quite all the way sometimes when he slept. He loved his fuzzy pajamas that said Little Brother on them. He did not love bath time.

I loved holding them together. I would say to myself, this is the best feeling in the world – to be covered up with babies. It seems crazy, but they really seemed to enjoy being together as well. Of course, 2 months is too young to have your first social smile. One of my deepest yearnings is to see him smile one day. I called him my Big E, which was kind of silly because he was a tiny little peanut. So tiny he fell off the growth charts, but that was supposed to change after the open heart surgery to correct the VSD. He was just growing out of NB diapers and clothing as March approached.

There is so much more I wish I could tell you – those precious moments and memories we cherish with our other children that we never experienced with Ethan. I could go on for pages listing the questions that cross my mind daily – like would he have eventually grown to love his bath? I wonder every night as his brother toddles up the stairs saying “Bah! Bah!” with such excitement. But those are some of the memories from his two months on earth with us, and we hope you feel like you know Ethan a little better as you read about him in the posts that follow.