There are some moments that just completely change the entire course of your life in a big way..some we prepare for and just know they will change our lives, but them some come unexpectedly..some are even unwelcome at first. This blog is about that..dealing with the unexpected things of life. About a year ago, my husband and I found out we were pregnant! That was kind of expected, kind of not as we were trying to get pregnant. The next 8-9 months were more or less what most young couples experience during pregnancy , and I think we mentally prepared pretty well for a major life change. We knew having a child would be one of those moments that would change our lives completely-we expected that. What we didn’t expect was having a child with special needs-specifically, Down Syndrome-along with immediate intestinal surgery, a stay at NICU, and a heart defect and surgery. I wanted to go back and tell our story of expecting Ethan, then finding out the UNexpected about Ethan, and what God is teaching us through Ethan’s life. The reason for the title of the blog “Better than Expected” is that one of the first things we learned is that having a child-yes, even (or maybe especially?) a child who brought surprises and an extra emotional roller coaster in the beginning-is so much better than we expected to begin with.
STARTING A FAMILY
Anyone who knows me well at all knows I LOVE kids. Even when I was a toddler, I already found it my place to nurture younger babies. My mom likes to tell the story about me telling a baby girl just a few months younger “Come here, honey.” I doted over my baby brother at four years of age. I was the kid in kindergarten who said “I want to be a mom when I grow up. Since then, I have sought out classes and jobs centered on teaching and counseling kids
Naturally, when my husband said “Lets just do it-lets start a family” a few months before our one year anniversary, I didn’t need much coaxing. It didn’t taking too long for us to get pregnant, either. Although I can’t say I know the exact day, I certainly remember where I was standing, the infliction in my voice-everything-so vividly when I saw the two lines appear on the pregnancy test.
I was getting ready for work and Ryan was awake even thought it as his day off. I really didn’t want to get my hopes us, but when I checked the results, I gasped and said “ryan..There are two lines!” I remember our eyes got huge and we just stared at each other in stunned silence then laughed and hugged each other excitedly. We spent the day calling out of town family before work and waited to tell the immediate family who lived closer in person as we planned to go out to eat with some of them anyways (great timing!)
I was insistent on waiting to tell others until after 12 weeks when I read it is less likely to have miscarriage after this point. Having a miscarriage was the first of things I was concerned about. It was one of the reasons we didn’t want to wait too long to try to get pregnant. If I miscarried a time or two, or I was difficult go get pregnant, I didn’t want to be getting up into my 40s. This, we reasoned, would make us statistically less likely to have a child with Down Syndrome.( Ironic? Yes, but I am also reminded of the verse that “We make our plans, but the Lord determines our steps” from Proverbs. I am so glad He did.)
COOKING THAT BUN IN THE OVEN
From this point on, we talked about baby names, fun things we could do as a family, and I started my ongoing “baby research” as I liked to call it. When I am excited about something and have to wait a long time for it, I read everything under the sun on that topic. When I was waiting for our wedding day, I planned the wedding in almost all my free time, even if it was unnecessary. It was the same way with my pregnancy. I wanted to know what foods would be helpful or harmful and specifically how the baby is affected. I wanted to know what organizations were being developed in my baby week by week, day by day, whatever I could find on the Internet and books. I got into Pinterest and started pinning bazillion kid activities, nursery ideas, you name it! My husband monitored my belly to detect when he could feel a kick and was SO ecstatic when he finally did! I had already breathed a sigh of relief to make it past 12 weeks and figured this baby was here to stay.
I exercised with X box games like Zumba then walked faithfully when dancing was too difficult. I didn’t drink caffeine and ate fairly healthy. I was going to make sure I did my part to help my baby be healthy, smart, maybe even musically inclined. 😉 Just like any good parent, I wanted the best for my baby.
SIGH OF RELIEF
I remember getting nervous about my 20 week ultrasound. Of course, we were soo anxious and excited to hear if we were having an Ethan James or an Ashlyn Grace. (I even made signs for announcing the gender via facebook ahead of time.) I would not be completely satisfied and relieved, however until I was told by the ultrasound tech and doctor that our child was completely healthy and had no abnormalities or problems.
(As an aside, I would like to point out that we would have loved and kept little Ethan even if we had been told he would have a heart defect, duodenal atresia, and Down Syndrome. We believe the words in Psalm 139 that say “ You knit me together in my mother’s womb..when I was formed in the darkness. I am fearfully and wonderfully made.” We believe Ethan was planned and loved by God, even if we don’t understand yet why Ethan has these extra medical problems and challenges. We may never understand, but God is sovereign, so we will always choose to keep our children.)
Nevertheless, no one can honestly say they are not relieved when they are told their child does not have any abnormalities-after all, isn’t life hard enough being a typical person with a regular number of chromosomes and organs all in working order? We would agree. So when the ultrasound tech mentioned Ethan having short legs, I flinched inside, thinking “she is noticing something out of the ordinary-uh oh.” The tech went on to ask if anyone in his family had short legs, and this calmed me as I supposed Ethan inherited this trait from some of the “shorties” in my husband’s family. 😉 The tech assured us that it wasn’t “short enough to be considered abnormal”, so my husband and I felt we could finally relax and focus on Ethan arriving!
THE FINAL COUNTDOWN
I went into full-on nesting mod, focusing on the nursery, “baby bucketlist” and what to expect from labor. We couldn’t have been happier.
When it was getting onto my third trimester, I had a lot of false labor. They lasted for so long and were so regular that I ended up going to the Labor and Delivery Triage not once, but twice- both times no baby, not even effacement.
This may be part of the reason I did not recognize real labor as real. It hurt at the time, of course, but it did not feel like I was contracting as I understood it was “supposed” to feel. Now I find it comical that I did pelvic tilts, went on walks, took a bath, etc. to relieve pain that I thought was Ethan being on my sciatic nerve. I started to think I may have another UTI, since this caused one of my long bouts of false labor.
I called to be worked in at my OB to be checked for a UTI and told my husband I needed to get up and walk while I wanted in the waiting room. (We were both off work that day..)Sitting was getting very uncomfortable and luckily, my name was called right as I started pacing the halls. I was weighed and was told “Oh, you are probably just getting stretched out is all.” The doctor came in to see me lying down, exhausted instead of sitting up and smiling as I usually greeted her. I told her “I have only slept four hours in the last two days. I’m really hurting” so she said “Ok, well let’s check you” as calmly as she would to say she was going to do a cursory temperature check. She took a moment and I thought “She’s going to say I’m not even effaced and all this pain was for nothing” when I saw her eyes go really wide and she quickly said “Okay, you are dilated to 6, so don’t move, we’re gonna get you a wheelchair. I don’t want you to have the baby on the way.. You guys are gonna have your baby today!” in a startled, forced cheery tone as an afterthought.
And so Ethan started to make his grand entrance into our lives to change it forever in a beautiful and heart-wrenching way all at the same time. We wouldn’t change this day for anything!
ETHAN’S ARRIVAL-LIFE CHANGING MOMENT #1
After I was wheeled in a wheelchair to Triage, I was hooked up to a monitor and signed paperwork for my epidural. (Getting the epidural scared me more than actually giving birth. I kid you not.) Ryan called our families and texted our friends to let them know Ethan was on his way. We were so giddy and I was so sleepy. I felt so good after getting the epidural and was kind of sad when the nurses turned it off so I could effectively start pushing. I was so exhausted from all the sleep deprivation that I looked at Ryan at one point and shook my head as though to say “I can’t do this..can’t I take a nap then try again?” It is hard work! Finally Ethan came-kind of all at once, he was so tiny. We joke about him “shooting out like a bullet.” I will never forget the moment I saw his sweet face. He didn’t make a sound, and I saw little bubbles coming out of his nose and mouth and he just stared with his eyes open wide like he was just as exhausted and shocked as I was.
Unfortunately, I didn’t get to see him up close for several minutes because the nurses were examining him and cleaning him. Ryan was such a proud dad, taking pictures and walking over to me to show me a close up picture of our son. I kept crying and said “He is so perfect..so beautiful.” I didn’t notice much at the time, but the nurses didn’t say a thing, or even smile at me. I learned why later. Ryan was finally able to hold him and carry him to my side to get a good look at him and hold his sweet little hand. When my OB was done tending to me, I got to finally hold the precious son I had felt kick relentlessly in my belly for all those months. It was so wonderful, and it was a beautiful moment to share in with my husband.
THE UNEXPECTED UNFOLDS
Next a nurse talked to me about nursing and gave me some pointers on positioning and so forth. I remember being bothered that Ethan kept sticking his tongue out.
Thrusting is a common feature of Down Syndrome, and I knew at least this much at the time.[/caption] and I worried that this would cause problems with nursing. He did better than I thought for just a moment, but we opted to try again later and let the grandparents come and meet little Ethan. They all four came in crying tears of joy and smiling bigger than I have ever seen them smile. It was so sweet to see. I had no idea that at that moment they all had worries of their own when they saw Ryan’s text of Ethan’s first picture.
Next we planned on having all our siblings who were in town come to meet Ethan. I waited while Ryan rounded them up in the waiting room, and at the moment Ethan was back in the nursery. I can’t remember why he was in the nursery at this point, but I’m sure there were a lot of things going on behind the scenes we didn’t know about anyways. This was our first child, so we didn’t have that many expectations about Labor and Delivery units.
I sat very blissfully and tired but without caring in my hospital bed when I heard a knock and saw a friendly-looking middle aged doctor at the door. He introduced himself as “Dr. M”, and I remembered this being the doctor my cousin recommended that we listed as Ethan’s pediatrician. I thought “Oh that is nice. He is coming to introduce himself since he is working here tonight.” Dr. M looked pretty somber, though, and I started to have a sinking feeling as he slowly sat down in a chair near my bed . He talked slowly as though he was very carefully choosing his words….”The nurses noticed…some unusual features..” As he started saying those words, I knew where he was going with this and his head started to seem like it was floating and blending in with the wall behind him as I felt fear creep into my body. I felt helpless as Ryan wasn’t even in the room to hear this. Right at that moment, Ryan walked in with an unmistakable look of joyful pride with a group of our siblings grinning behind, peeking into the room to see their little nephew. I looked at Ryan with a look of panic because he was going to hear this unexpected news after me, which I hated, and I didn’t want our siblings to hear at the same time as my husband, Ethan’s daddy. Ryan could tell instantly when he locked eyes with me that something was wrong, but before Ryan could ask or usher our siblings out of the room, Dr. M politely but firmly said “No visitors right now, please.” Our siblings quickly retreated into the halls, then Ryan came back in and took a seat as Dr. M continued.
“He has some unusual features the nurses noticed..his forehead is a little larger, but when I came to examine him myself, a lot of that has already shrunk back down over time” (from being in the birth canal). I really can’t remember what else he said, but I’m sure he mentioned the tongue thrust because I even noticed that. I do remember, however, tears silently rolling down my cheeks as there was now a possibility that Ethan was not “normal” and may have extra challenges, get ridiculed, get dismissed, and a million other things I had not even considered because I thought we were “in the clear” as far as abnormalities went. I recall the very sweet nurse who came to assist with nursing positions handing me tissues as she quietly stood by to show support.
I remember Dr. M saying he was ordering a blood test because he had “features of Down Syndrome. Since we are coming up on the Fourth of July holiday, it may take until next Tuesday to get the results. Now, we may find out later that he does not have it, and you can cuss me later, but I just think as the parents you should know why we are ordering this blood test.” I really appreciated him keeping us in the know, and I tried to convey that and felt guilty for crying.-because I loved our son so, so much-no matter what. Dr. M also said “Especially now that I see his head has gone down, I am leaning toward “no” on him having Down Syndrome because he doesn’t have just a lot of the features. Some of them are also common in premature babies.” (Ethan came a few weeks early.)My husband was very quiet but then said “I know you can’t say for sure, and we won’t hold you to it-but about what percentage would you say you feel he does not have Down Syndrome?” Dr. M paused thoughtfully then said “I would say 60% that he does not have it.” Dr. M had several long respectful pauses to allow us to digest what he was saying and allow us to ask questions, which I very much appreciated.
After our questions were answered (although we really just had one or two related to his opinion and when we would get the results of the blood test) I wanted to just be alone with my husband to attempt to begin to digest all the joy as well as the worry we were now experiencing. The very sweet nurse, however, decided to stay and talk to us..She wanted to know our reactions and encouraged us that “He is your little boy. Don’t let this ruin your day. He is so adorable.” “Don’t let this ruin your day”…those words were very helpful, and I did my best to set the worries aside. It was hard, though. I was upset that we had to wait so long to find out if our son actually had Down Syndrome. My husband asked if I wanted the families to come in, and I really did want them to, especially since our siblings had still not had a chance to meet Ethan, but I was afraid how I would react if they were all crying. I decided to have only one set at a time-the Carrolls and the Nutts- to minimize the feeling of a crowd of people. While a few siblings did look a little teary-eyed (which I thought was appropriate in light of the change of a new life entering the family-Down Syndrome or no Down Syndrome), they were all just dying to meet their little nephew. That was the beginning of the healing to me, to see that others accepted our son, even though we may find out in a few days that he for sure has Down Syndrome. They were affected by the news of the suspicions that Ethan had Down Syndrome, which Ryan had told everyone, but when it came down to it, that had waited to meet their nephew and it was evident that they were ecstatic to meet him. And the grandparents did not love him any less or show disappointment in him the second time they came to meet him. They all came in grinning, playfully fighting over Ethan, and snapping pictures, just like I had hoped in the first place. Even if the whole world wouldn’t accept Ethan, his families did- and that made all the difference in the world to us.
When the families left, however, the room was quiet, Ethan went back to the nursery so we could get some sleep, if at all possible, and we were left in the cold, dark hospital room with our worries and joy all mixed together in a confusing emotional rollercoaster.
I just wanted to feel prepared and know what exactly we were dealing with. Were we in for surprises and lessons on feeling “prepared,” as if you really can be…
We decided to let Ethan sleep in the nursery so we could get a little sleep. (After all, I had only slept four hours total in the past forty-eight-plus hours and birthed a child!) Before we slept, however, we discussed the news of the “forty percent” estimate of our son having Down Syndrome for just a few minutes…”Who will he play with?” Ryan asked shakily. I had the same worries and said “I just don’t want people to make fun of him. I was already hoping that wouldn’t happen because it seems like almost every kid is bullied at some point, and I just can’t stand thinking about it. And now he may be someone a lot of kids already make fun of just because of how he was born.” We cried a little but were also exhausted and knew we would have to worry about that later. We wouldn’t know if he had Down Syndrome for several days, anyways, we thought.
We were also slightly concerned because Ethan had been spitting up a little even though he had hardly eaten anything. The nurses didn’t show much concern at this point, however, so we somehow fell asleep, happy to have a son but also teary-eyed with worry and exhaustion. About two hours later, we saw our hospital room’s light turn on and saw Dr. M walking into our room again. He had that same respectful but somewhat pitying look that comes before bad news is delivered. “Oh no..” I thought. I waited for the worst. “Your son has been spitting up quite a bit…” I panicked and thought “he is coming to tell us our baby is dead. Ethan is dead.” Dr. M went on before I could get too worked up..”.its that yellowy color, too..that means he is not really digesting and I think he most likely has duodenal atresia. It could be one of three things, but if it is duodenal atresia like I suspect, his intestines are not attached..there is a gap. It can be fixed fairly easily with surgery, so we have called on the helicopter from Children’s Hospital to come get him, and he will leave in about an hour, then have the surgery tomorrow morning.” He paused for a moment to let that news sink in and then said, “Now, if it is the duodenal atresia, which I think it is, I am now pretty certain-probably 90 percent-that he does have Down Syndrome.” Dr. M got quiet and just waited for our questions, our shock, our grief and disbelief to settle in. Ryan said absolutely nothing from what I recall, and I thought “He must be trying to not cry.”
I felt like I should say something and once again felt guilty for not crying this time. (So I felt guilty for crying the first time, then for not crying the second time-I needed to ease up on myself!) I was still relieved he was not dead but was also so beyond exhaustion and shock that there literally were just no tears at first. So I finally said…”Oh…poor little guy.” Now I really just wanted all the medical staff to leave and for Ethan to come back to us, and leave they did after they knew we were not wanting to ask questions. I felt like I had been dropped from a height-which in a way I had.
Ryan asked the pilots from Children’s Hospital if I could hold Ethan for a few minutes before he was med-flighted over for his surgery. The pilots were very gracious to let me hold Ethan for not just a few, but for about 15 minutes, and did not rush me. It was a tearful time.
After Ethan had to be taken, the strange feeling I’m sure every new mother feels of the sudden emptiness in an empty abdomen, an empty womb..suddenly felt MORE empty. Not only was I adjusting to not feeling Ethan constantly kick, but now my new bundle of joy had already acquired two serious diagnoses and was taken away from me, after only 45 minutes of bonding. The next morning, after my early discharge from the hospital, Ryan’s parents drove us to our house to get a few hours of sleep before we went to the Children’s Hospital to see our little boy when he returned from his surgery and was admitted to NICU. It felt so empty walking into our house, to the almost complete nursery, suddenly even more incomplete because we walked into our home empty-handed. Ryan and I cried and held each other for a little while, then got a few winks. We called and heard all was going well in surgery. My parents held Ethan while waiting in the pre-op room so Ethan wouldn’t be alone. We wished we could have been there, but I really needed rest, and Ryan wanted to be there to support me. We really needed each other. Ryann’s parents took care of us, got us food and a breast pump since we were in a daze. This deep sorrow and daze didn’t last long, though, because as the Scripture says, “Though the sorrow may last for the night, His joy comes in the morning.”
A DREAM THAT DIES CAN BLOOM INTO A REALITY THAT IS BETTER THAN YOU CAN IMAGINE.
During my pregnancy, especially after the “sigh of relief” after the 20 week ultrasound, I had this excitement and thoughts of having a smart, witty, musical, and athletic little boy who would have asthma at the worst. Yes, that dream and expectation were altered when all of Ethan’s diagnoses unfolded (and continued while Ethan was undergoing his open heart surgery when we heard it was a little worse than originally expected.) All the while, our love only deepened for Ethan. He is our son after all! For people who think maybe they wouldn’t be able to handle having a child with Down Syndrome or medical issues, you can. You will because your child is your child no matter what. Without relying on God, it would be more difficult I would imagine. I don’t know how we would have gotten through the worries and stress without His promises and comfort. I think it is important to remember that a child is a child, and it shouldn’t surprise us how much love we are capable of for our children, any children-no matter the IQ or personality. That love for your child and your Father’s love for you will keep you going to give your children what they need.
I just can’t imagine Ethan looking and acting any different than he is. He has extra challenges, but they are part of who make Ethan, Ethan. His tongue sticking out most of the time, his extra room between his big toe and the rest of his toes-are “features of Down Syndrome”, true-but they are also things that I will always remember as the cuteness that is my little boy. I accepted Ethan having Down Syndrome pretty early on for the most part, but I remember one point in time when Ethan was a few days old that it finally clicked for me in a big way how more alike Ethan is than he is different from other children (to use a popular phrase from the Down Syndrome community.)
THE “ZOO REVELATION”
I was passing the zoo on the way to the hospital to visit Ethan and said “We get to take Ethan to the zoo! He is going to get all excited about the monkeys and ask why he can’t throw food in the cages..just like the other kids! We are gonna look at Christmas lights with him. We are gonna play in the yard with him, and play Mario with him. I can’t wait! It will be SO much fun!” Soon after this zoo revelation, all the things I had hoped and dreamed for my child before I met Ethan face to face, before the surgery and the diagnosis, all seemed very possible again. There were mostly things added to my previous expectations, rather than taken away. Now we will have a lot of therapy sessions…that’s okay. More doctors appointments and IEP meetings…we can do that. As long as I can play with my child and do all those fun kid things and watch my child experience them for the first time with that excited look on his face, then that is all I ever wanted. These thoughts helped me move on to not being quite as concerned as to how having Down Syndrome will affect Ethan’s childhood. He is going to have an awesome one!
And here is Ethan on his first zoo trip!
“He is one happy boy! Despite all the pain of hospitalizations, he is the biggest joy of our lives aside from Jesus!
By: Natalie, Ethan’s Mommy
To read Ethan’s Birth Story from his Dad’s Perspective, click here