BIG STEPS!

getty_rm_photo_of_mother_teaching_baby_to_walk

BIG STEPS!

That is the best way to describe what has happened over the past 2 days. It has been an eventful and good two days. Ethan has finally, after 3 weeks and 4 days, began to make progress! As of Thursday Ethan’s Nitric Oxide has been OFF, as of last night Ethan’s Dopamine has been OFF, and Ethan’s PEEP has been down to 8. The only downside is Ethan is on his belly for the time being. OH I forgot to mention Ethan is OFF his paralytic, and for the first time in almost a month we have got to see Ethan open his eyes. Granted there was a day and a half earlier when he opened his eyes before he got really sick again.

This has been the first truly encouraging news since Ethan has been here. Throughout his stay in the hospital we would take 1 baby step forward and a big step back. This feels as if the first time I have been able to say “Yes Ethan is truly getting better”. His feet are pink and warm off of his blood pressure medication, he is squirming in his bed, and he is trying to lift his head up to look at who is talking.

Ethan’s chest X-ray this morning did look worse than yesterday, but not terribly so. The radiologist read it as worsening atelectasis, and to help with this Ethan has been started on IPV treatment. THis is a machine that they hook up to Ethan’s breathing tube and it pulses, best way I can think to describe it, rhythmically to help break up the secretions and pop open the closed off areas of the lungs. They have also placed Ethan on Auto mode which allows him to initiate a breath and the machine to give the extra pressure and volume he needs. The only time the ventilator will breath for him is if there is a >10 second apneic period.

These are huge steps. Ethan has shown so far that he is tolerating these changes; however, he has also show in the past that major changes are not going to be tolerated. So please pray that Ethan will continue to do well.

Specifically pray for Ethan to be able to tolerate these changes and not have a crisis situation come up and set him back again. I hope this doesn’t sound pessimistic, but his history this hospitalization has been discouraging with big steps.

Also pray for his lungs specifically that the atelectasis will improve with the IPV treatment.

Please continue to pray for Natalie and I. While this is the best news we have heard in over a month we are tired. This has been emotionally, physically, and spiritually straining. Pray for rest, restoration, and strength for us.

God is great and has a healing hand!

Lord,
Thank you again for all you have done, thank you for giving the Nurses and Doctors and all staff at ACH your healing hands. The work they do here is remarkable. I thank you for the gift that Ethan is, and the strength that he shows. Thank you for showing your love to us through him. I pray that you would please continue to use him to bring glory to You.

amen

Also don’t forget that Easter is next week! As we head into the next week its time to party and celebrate the events that happened over 2000 years ago. The greatest love story that has ever been told came to completion 2000 years ago

By: Ryan aka Ethan’s Daddy

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21 Things You Should Know about Down Syndrome (World Down Syndrome Day is Today!)

Great book on Down Syndrome

Great book on Down Syndrome

WORLD DOWN SYNDROME DAY 3/21
21 Things you should know about Down Syndrome

1) They have 3 copies of the 21st chromosome, which is called Trisomy 21, or Down Syndrome (Hence the reason for celebrating World Down SYndrome day on 3/21!)

Down Syndrome is also known as "Trisomy 21", meaning there are 3 copies of the 21st chromosome, when there are typically only 2.

Down Syndrome is also known as “Trisomy 21”, meaning there are 3 copies of the 21st chromosome, when there are typically only 2.

2) A parent didn’t DO anything to cause their child to have Down Syndrome.

Gifts is a compilation of mothers' stories of how their children with down syndrome have enhanced their lives. Includes a lot of birth stories and finding out both prenatally and postnatally. Excellent book, easy read.

Gifts is a compilation of mothers’ stories of how their children with down syndrome have enhanced their lives. Includes a lot of birth stories and finding out both prenatally and postnatally. Excellent book, easy read.

3) People with Down Syndrome like to have FUN as much as the next kid or adult.

Having some boxing fun

Having some boxing fun

4) People with Down Syndrome (just like any other person, who has feelings-which we ALL do) do not appreicate being called “retard”…so spread that awareness around so that someday this word will be considered just as offensive as a racial slur. In fact, the header on our website at present is from the recent campaign of “Spread the Word to End the Word”, and the actors from the show “Glee” did a public service announcement on it.

5) Some actors with Down Syndrome are: Lauren Potter of “Glee” television show, Chris Burke of Life Goes On in the late 80s and early 90s. This show depicted the life of a family with a child with Down Syndrome. Chris Burke is now the Goodwill Ambassador for the National Down Syndrome Society.

"Life Goes On" television cast. Chris Burke is the actor with Down Syndrome who was popularized in this family series about life with a teen with Down Syndrome.

“Life Goes On” television cast. Chris Burke is the actor with Down Syndrome who was popularized in this family series about life with a teen with Down Syndrome.

Lauren Potter, actress with Down Syndrome who plays a cheerleader on the television show "Glee" that is still airing today.

Lauren Potter, actress with Down Syndrome who plays a cheerleader on the television show “Glee” that is still airing today.

6) People with Down Syndrome have more similarities to you than they have differences from you.

"More alike than different"

“More alike than different”

7) People with Down Syndrome (even some young preschoolers) can read, write, and carry on conversations very well. Abilities can vary as much within the Down Syndrome population as much as they vary within any given city full of typical people or classroom full of typical children.

8) In the Down Syndrome community, it is considered more appropriate to say “child/person WITH Down Syndrome rather than “the Down’s guy/baby.” Do you only see Down Syndrome when you look at a person, or are you seeing a person first? Please don’t call me “Asthmatic girl”, or “ADD girl!”

9) A Down Syndrome diagnosis is typically given soon after birth. The pediatrician will usually notice features that are consistent with Down Syndrome and will send blood work to determine whether the baby has 3 copies of the 21st chromosome.

10)Some features that pediatricians look for when determining whether a Down Syndrome diagnosis are: a single “palmar” (across the palm of the hand) crease, almond shaped, or upward- slanted eyes, sandal gap between big toe and other toes ,(just a little extra gap that makes wearing sandals less painful, I imagine!) and a larger than usual forehead. In any Syndrome, you don’t have to have all the features to have it. These are some things that you will find in some combination, in a large cross-section of babies with Down Syndrome.

Tongue Thrusting is a common feature of Down Syndrome, and I knew at least this much at the time.

Tongue Thrusting is a common feature of Down Syndrome, and I knew at least this much at the time.

11) While people with Down Syndrome generally do not have high IQs, they can be average or moderate. Part of the stereotype of people with Down Syndrome being dependent and lacking in ability probably has a lot to do with them being institutionalized in the past. Strides have been made to avoid institutionalization, which include daytime rehabilitation clinics for preschoolers (speech, physical and occupational therapies within a preschool setting), vocational training centers for adults, and jobs offered to people with disabilities, including people with Down Syndrome.

12) Children with Down Syndrome have hypotonia, which means low muscle tone. This makes it more challenging for them to do any physical task-they have to put in more work to use their muscles than typical people. Children and adults alike with Down Syndrome often have physical, occupational, and speech therapy for these reasons.

13) Speaking of speech, children with Down Syndrome can understood what is being said very well before they are able to respond. They are considered delayed in speech compared to their typically developing peers. Something that many parents have found helpful is to teach children, starting as young as under one year, American SIgn Language (or ASL.) This helps minimize frustration in knowing what parents are saying and wanting to communicate but not being able to form the words yet. ASL is to be done alongside talking and speech therapy so the child can speak clearly.

Many parents of children with Down Syndrome (as well as autism) use Baby Signing Time and Signing Time to help children who need assistance with expressing language they understand BEFORE they have the speech capability to express it.

Many parents of children with Down Syndrome (as well as autism) use Baby Signing Time and Signing Time to help children who need assistance with expressing language they understand BEFORE they have the speech capability to express it.

rachel_ilu-1024x856

Signing Time is designed for kids ages 4 and up. It uses American Sign Language (ASL) just like Baby Signing Time, and it is helpful and fun for ANY kid, not just ones with DS.

Signing Time is designed for kids ages 4 and up. It uses American Sign Language (ASL) just like Baby Signing Time, and it is helpful and fun for ANY kid, not just ones with DS.

14) Don’t be so afraid to offend people with Down Syndrome or their family members that you just don’t get to know them at ALL. More alike than different, remember? So start there…talk about normal everyday things like you would to all people!

15) Special Olympics is not limited to people with Down Syndrome, but it is a great way to get involved in acceptance and celebration of people with Down Syndrome.

16) People with Down Syndrome are now living much longer life spans than in the past 30-40 yrs. The average life span is now growing closer to that of the typical American.

17) Children with Down Syndrome are often born with congenital defects as part of the chromosomal abnormality. For example, my child had an AV Canal Heart Defect..there are several different kinds of heart defects that children with Down Syndrome may have, and most involve having holes in the heart. Some require surgery, and some holes close over time or can be left alone without causing harm. Advances in medicine have played a major role in the life span of people with Down Syndrome.

18) Many children with Down Syndrome are VERY flexible. I remember the genetic doctor telling us that some kids with Down Syndrome will get off the floor in a way that seems more difficult to typical people. Some kids pick things up with their feet, when this would not occur to typical kids normally. I have witnessed this with my own child getting his leg way up to his head and while seeing other kids in pictures sitting in ways that make them look like little acrobats!

Showing a little of his super-flexibility. I've seen some pictures of older kids with Down Syndrome doing some pretty amazing stunts as well!

Showing a little of his super-flexibility. I’ve seen some pictures of older kids with Down Syndrome doing some pretty amazing stunts as well!

19) Kids with Down Syndrome experience a range of emotions, just like anyone. They are happy, but they are not happy ALL the time as is the common misconception. They get mad and cry…and they can get spoiled just like typical kids, so check yourself parents and grandparents! (Myself included, my kid is still not 1 !)

20) Once a child with Down Syndrome has only been out of the womb for a minute, he has survived a Herculean task of survival. First of all, most babies from the very beginning do not survive past those first 12 weeks if they have Trisomy 21. These babies are at the embryonic stage, and most become miscarriages. Second of all, if a mother suspects she has a child with Down Syndrome and opts to have amniocentesis, a procedure to check for disabilities by sampling some amniotic fluid, the mother often chooses (and is often even pushed by doctors, sadly) to abort the baby. So babies with Down Syndrome are strong survivors and deserve some credit!

An organization that supports choosing life for kids with Down Syndrome specifically is ISDC for life http://www.theidsc.org/

21) People with Down Syndrome have a life worth living. The best way to get this point across is to share the fun, inspirational things you have learned about people with Down Syndrome with others around you. If you have a loved one with Down Syndrome, its to show your loved ones’ pictures and let the world know how cute and handsome they are, and how proud you are of them. How much you love them and others do, too. I think too many people get scared to carry a child with Down Syndrome to term because they have believed the lie that the child would be better off not living, the child would be miserable, and the child would be a burden to them.

Another precious gift from God

Another precious gift from God

Let me tell you first of all that, kids are a burden! Bet you weren’t expecting that! ALL kids are! It’s not an easy task to raise children. It can be scary as heck. Don’t forget , though, that some of the most precious things in life come with a lot of sweat and tears, but immeasurably overflowing joy. If you have any questions, today or ever, please ask. 🙂

Written by: Natalie (Ethan’s mommy 🙂 )

Update (my new most hated word)

So here is where we are as of now. Ethan is having lots of trouble with his left lung. This is the lung that has been giving us trouble all along. He has pseudomonas pneumonia (and one other bacteria) they have stopped the clindamycin and started tobramycin in its place. They are still doing merrem as well.

They were concerned about his adrenal function on Sunday. His cortisol level was lower than it should be with how sick he is. They did a cortisol stimulating test which showed his adrenal function is ok, but just wasn’t able to keep up with how sick he is.

They were going to attempt to turn ethan from supine to prone every 8 hours, in order to help break up secretions within his lungs. With that they are doing sodium bicarbonate lavages down his endotracheal tube to help clear the secretions. Ethan has had trouble with the turning and lavages so they are holding off on the every 8 hours turns, but continuing on with the lavages.

Ethan has been having a rough night so far. He is having trouble with his oxygen saturation. He has been requiring anywhere from 50% to 100% FiO2 depending on his needs. The past 45 minutes (it is 1217 as I am writing this) have been rough on him. His oxygen saturations have been lower, and his Ppeak have been high (basically the pressure it requires to give him a breath, if I am wrong on this all my nursing buddies can correct me). The respiratory therapist gave him his chest physiotherapy and lavaged his lungs which helped initially, but now he is requiring 70% FiO2.

The resident has ordered for Ethan to get a chest Xray as I am typing this to see what his left lung looks like, to see if there is another pleural effusion. This will hopefully give them a better idea of what is going on.

These past few days have been increasingly hard on us. I am tired but can’t sleep at times. It is hard to feel that Ethan is getting worse when he should be getting better. It is hard to see him so sick for so long. He has been sedated now for over 3 weeks and paralyzed a vast majority of that. As time goes on we get sadder. We are trusting in the Lord to bring Ethan out of this, but this is getting harder and harder. Please continue to lift us up. It hurts so much seeing Ethan ebb and flow through this sickness. We want so badly to get him babbling to us again.

It seems like an eternity ago that we were loosing sleep because Ethan was keeping us awake at night, or waking up early. It feels like forever since I have gone to the kitchen exhausted trying to clean Ethan’s bottles. I mix his formula up and shake it hours ahead of time so he won’t get gas from the bubbles. I miss those days. I miss being tired because I am feeding my son at 5 in the morning, or 11 at night. I miss hearing him spit his baby food all over his high chair.

All these things that I never thought a parent would miss I do. I have learned that it is the small things that you love, and miss when you don’t get to do them anymore. It is the small things that hurt. Its amazing how much I WANT to get to change a poopy diaper, and jokingly say “DAAANG Ethan thats rough” all the while he is smiling and babbling to me.

If there is anything you take away from this I just want you to spend time with your babies. Enjoy the sleepless nights, and hug and kiss them goodnight every night. 😀

Lord God,

Time is hard, and life has been tough. We feel as if we are walking through the valley with the shadow on our backs breathing hard. We know you are sovereign and in control. We know you hold our baby in your hands. Please strengthen us to have faith in you. Let me depend more on you. No matter the future I know you are in control and have the deepest love for our son.

Thank you so much God!

Please pray that Ethan begins to heal. It feels like so long since he was having more good days than bad. Pray that we make progress soon. Pray healing over his lungs from the pneumonia that he has. Pray for healing over his body!

Pray for our strength, not necessarily my strength physically, but my strength to trust God. It is hard to see all of this and not wonder where God is going. Pray that I don’t look for where it goes, but rather trust God to guide my every footstep.

Also pray for Natalie’s health. she has been feeling crummy.

 

By: Ryan aka Ethan’s Daddy

Heart Surgery Journey

(one post-op picture included at bottom of post)

We found out about Ethan’s heart defect while he was recovering from his surgery for duodenal atresia. I don’t think we understood at the time what the nurses were telling us ( or I didn’t) because I was just so overwhelmed from all the information we already had been bombarded with, from waiting on Ethan’s blood work for the final Down syndrome diagnosis to him being med-flighted to the Children’s Hospital.

When we had more time to digest it all, however, a cardiologist rounded while I was with Ethan in NICU and gave me a pamphlet on the type of heart defect she thought he had at the time based on his echocardiogram. As soon as the word “surgery” was mentioned, I clued into the fact that this was a big deal. I called Ryan, who had to go back to work at that point, and we were all flustered again. We calmed down soon, however, as we were told they would probably wait about a year to see if the hole closed on its own.

We celebrated getting to take our little one home and set aside worries about his heart.

Ethan had to have increased calories in his formula/breast milk mix, and he had to be on a diuretic twice per day. This was our little routine for quite some time.

Fast-forward to his cardiology follow-up in October, just before his first Buddy Walk. We knew on this day, a decision would be made based on his echo whether the surgery could wait, or if he would need surgery sooner, before the onset of flu season. We were disappointed (at the time) to hear that he was going to have open heart surgery because the hole was so large, it was unlikely to close on its own and waiting for flu season to inflict its ravaging toll upon Ethan’s poor little heart would be far too risky. Before this appointment, we discussed how the weekend’s Buddy Walk would either be a celebration of the hole in his heart having closed, or it would be a time of much-needed support from friends and family. It ended up being the latter.

We had a great turnout for Ethan's first Buddy Walk!

We had a great turnout for Ethan’s first Buddy Walk!

The walk was a nice way to get some moral support on our upcoming scary moments!

The walk was a nice way to get some moral support on our upcoming scary moments!

So then we found out the surgery wouldn’t be until the first week in December and were told to protect Ethan from germs so he wouldn’t catch an early flu bug. Thus began another stint of germophobic parenthood!

We went the day before the surgery for a day-long pre-op visit, where we signed consents, discussed scary, albeit unlikely, scenarios that could occur and end in death. I remember the anesthesiologist asking if I “needed a minute” because I started crying while he was talking-I just couldn’t help it. Ethan went through so much that day-getting blood drawn twice, an echo, and getting an X-Ray (which he hated even more than the blood draws!) We were all so emotionally and physically worn out at this point and just ready to get this surgery OVER with!

December 6, the long-awaited, and also dreaded day

The week leading up to Ethan’s surgery, I would hold him in the rocker and cry because as much as i trust that God would see him through this surgery, it was scary to think about. Furthermore, I knew at the very least, Ethan would be sedated and unable to be held for a while after his surgery. Ryan and I both were in knots. Thankfully, Ethan wasn’t old enough to know at all what was coming. We woke up around 4 am to get packed up and to leave to the hospital.

The long wait once we were there made our nerves even more raw, and Ethan was growing hungrier by the minute. (He couldn’t eat prior to the surgery.) Finally, it was time to walk down the hall with the anesthesiologist. Up to this point, Ryan and I had taken turns holding him, but on this walk through the halls before handing Ethan off to the doctor, Ryan wanted me to get to carry him. I was so reluctant to hand him over, yet I knew Ethan needed this for his health.

How many people have a picture of the single hardest moment of their lives? I do! Handing Ethan over to the anesthesiologist.

How many people have a picture of the single hardest moment of their lives? I do! Handing Ethan over to the anestisiologist.

It was a very sobering moment for me, and it really felt a lot like handing Ethan over to God Himself, because I was entrusting Ethan to be taken care of by someone else for something that was a very fragile procedure-open heart surgery. I prayed, “God, I am handing him over to the anesthesiologist, but really, I am handing him over to You.” Ethan was asleep at this point, which I was thankful for. The man nodded respectfully, turned, and then the door closed.

I was relieved in a way, that we were getting this process moving forward.

Next, our four parents (Jim, Melody, Mom (Carol), and Dad (Vic) ) accompanied us in a small surgery waiting room where a nurse would come give us updates throughout the procedure. I’m so thankful they do this at the hospital. Our siblings waited in the main waiting room, and we texted them and sometimes ran out to tell them throughout the procedure. I knitted to keep my hands busy and to keep from going crazy! I highly recommend some sort of activity like this for anyone expecting an experience like this! It was such an emotional rollercoaster, waiting to hear how Ethan was handling the anesthesia, then how the surgical procedure was going. When they told us they were at the stage of “it (the heart) being completely open” I wanted to faint. It was incredibly stressful knowing my baby’s heart was stopped and on a bypass machine. I was so thankful for the friends and family who donated their blood for Ethan so I could at least feel good about knowing where that came from for his transfusion. One less thing to worry about.

We prayed, we read Scripture, we updated friends via Facebook. We waited. And waited. For more updates from the staff. When we didn’t get one right on the hour, we squirmed a bit in our seats. The nurse came in and breathlessly apologized for the delay and said the doctor was having a little bump in the procedure. He said the heart defect was “more complex than we had thought based on the echos.” He told us that there were two holes, one a very sizable hole that needed a space to create two valves. Instead, he told us, it was one large valve and was causing mixing of blood. He said the mitral valve was leaking “severely” as the surgery was in progress, but he was going to get it “as close as possible to not leaking”. He could not tell us if this would mean future surgeries, and this made us feel sick at our stomachs. I couldn’t imagine another gut-wrenching few hours, not to mention the months prior to this day.

Finally, we received word that he has “fixed it enough to be satisfied and not be concerned about fooling with it too much.” (These might not be exact quotes, by the way. I’m sure he sounded more professional than that. Haha!) We breathed a sigh of relief when the surgeon himself came in and said a “moderately leaking mitral valve” is considered a big deal. It may need surgery over time, it may not. It could get better, it could get worse.

I was so relieved when his little fixed heart was beating on its own again and we were told to come on back and have a look!

This was slightly a shock to see, but the main reason I included this photo is that I wasn't QUITE as upset when I saw it because I had already seen a similar post-op picture on a another parent's blog post about heart surgery. This way I had time to mentally prepare. I was so glad his heart was fixed so well and that he was on the road to recovery!

This was slightly a shock to see, but the main reason I included this photo is that I wasn’t QUITE as upset when I saw it because I had already seen a similar post-op picture on a another parent’s blog post about heart surgery. This way I had time to mentally prepare. I was so glad his heart was fixed so well and that he was on the road to recovery!

I was blown away by how many medicines this child was on! Thank goodness for smart medical people!

I was blown away by how many medicines this child was on! Thank goodness for smart medical people!

Our boy and our God once again blew all the staff out of the water at how fast he recovered-7 days is all he spent in CVICU, and we were outta there! It was time to celebrate Christmas!

chicks dig scars with heart stat heart month

I have even heard of a family who celebrates the day their daughter’s heart defect was repaired. They make a cake and everything, like on a birthday. Very cool. We are thinking about taking on that tradition. Because December 6th will always mean something to us. ❤

By: Natalie aka Ethan’s Mommy

Ethan’s Birth Story (from the Mom’s Perspective)

This is how we told the online world about our baby being a boy.

This is how we told the online world about our baby being a boy.

THE NAME
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!

We could not wait to meet our little man!

We could not wait to meet our little man!

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.

first family photo edited with watermark

"He's perfect" is the first thing I said, and I never was wrong about that even though I didn't know about his diagnosis yet.

“He’s perfect” is the first thing I said, and I never was wrong about that even though I didn’t know about his diagnosis yet.

Love him and his beautiful almond-shaped eyes (yes, that is a feature of Down Syndrome as well)

Love him and his beautiful almond-shaped eyes (yes, that is a feature of Down Syndrome as well)

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.

I already knew tongue thrust was a common feature for Down Syndrome, but I didn't really put it together yet in all the excitement. I just worried it would interfere with nursing at the moment. Didn't imagine he would keep doing it.

I already knew tongue thrust was a common feature for Down Syndrome, but I didn’t really put it together yet in all the excitement. I just worried it would interfere with nursing at the moment. Didn’t imagine he would keep doing it.

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…

#2 CURVEBALL
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.

HELICOPTER RIDE
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.

So many emotions..I hadn't got to hold him much and off he went..

So many emotions..I hadn’t got to hold him much and off he went..

Ethan in his pod with his ear protectors for the helicopter ride to the children's hospital

Ethan in his pod with his ear protectors for the helicopter ride to the children’s hospital

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!

As I say, being a parent is even better than I thought it would be! We made it to the monkey cage at the zoo like I'd dreamed about when passing the zoo on the way to see him at NICU! Kids are kids, they are more alike than different! Down Syndrome or no Down Syndrome, they all enjoy a good zoo trip (especially that zoo train!)

As I say, being a parent is even better than I thought it would be! We made it to the monkey cage at the zoo like I’d dreamed about when passing the zoo on the way to see him at NICU! Kids are kids, they are more alike than different! Down Syndrome or no Down Syndrome, they all enjoy a good zoo trip (especially that zoo train!)

“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

Missing Ethan

These are some poems I wrote when I was horribly saddened by Ethan being sedated and chemically paralyzed while in PICU when he got the flu. I wrote this on the 12th night of Ethan being in the hospital. I think it was also so hard on me because this was his 3rd hospitalization in his first 8 months of life. The first two were from surgeries.

think I’ve written maybe 5 poems ever, and its usually when I’m feeling very sad.

sleeping ethan in PICU

sleeping ethan in PICU

“Child, Wake Up”
Child, wake up
I can’t bear to see your face, unaware and far away.

Wake up-
What fills your dreams?
When I talk, do you understand anything I say?

Wake up.
I miss your laughs, the way you move, the way we play.

Chld, will you show me a sign? How long will I have to wait?
But it’s not you that bothers me-it’s time.
God, when will it speed up?

“A Letter to my Ethan, having a long winter’s nap”

I almost held a pillow today. That’s how much I miss you.
The weight of you in my arms;
your tiny fingers scratching,
scratching,
scratching.

That quiet stillness in your eyes just before a grin
creeps into your face.

The way that smile turns your whole body into one giant, nothing-to-hold-back grin.

Ethan being a ham

Ethan being a ham

And your baby lotion. I smelled it just the other day and cried. Because it just
expresses your sweetness, back to the first day I put it on your skinny legs.

Your little clothes, tiny new shoes
waiting to be tried on.

And you will.
We can’t wait.
We won’t want to put you down for a month!

Love, Mommy

Better Than Expected-Behind the Title

imageThis blog is co-written by myself (Natalie/Ethan’s mommy) and Ryan, Ethan’s daddy. Ethan is our baby, who was around 8 months old at the start of this blog. It will have a lot to do with him and Down Syndrome, as he was born with Down Syndrome. The title “Better than Expected” is NOT because we were expecting horrible things when we heard his diagnosis and discovered it wasn’t “that bad”; life with Ethan is even better than expected than what we had in mind BEFORE we knew his diagnosis. He is such a joy, and God has taught us so much through him! We want to share experience and knowledge about Down Syndrome with others using this site. Any reader can relate in one way or another, though, so be sure and follow us and tell your friends about it.

my two loves

my two loves

A cause I learned about in the past year that I think is amazing: donating money for those who want to adopt children with special needs, specifically Down Syndrome