Changes for Ethan and our sanity

I don’t even know what this is going to look like since I opted to skip pen and paper journalist and I have had so much I have not fully processed because I’m taking care of kids/working and chugging along, but I knew I needed to journal by typing or pen and paper (cuz I’m way faster at typing than pen and paper writing, so here we are.) And I like to share some things because its hard to have time or the words on the spot in family gatherings and attempts to talk with friends. Because of all the things I am going to share is some of the reason I might come across as flaky or inconsistent in trying to make or maintain friends although traditionally I have been pretty great at that (ha)

So here we go…
What I thought was a short-term journey of getting Ethan to get “a little older and stronger…to school age” etc. has become more clearly not quite as short term as I had thought and hoped. He gets hit just as hard by illness and as we were told in May by his pulmonologist (lung doc/APN) his lungs are like “preemie lungs” basically. This to my understanding is mostly due to him being on a ventilator for a month as a baby (7-9months old in hospital). I used to say I don’t think I have PTSD, even a little bit of the characteristics (and I mean real PTSD because Im a therapist for those who don;t know, so I generally don’t throw out diagnosis labels like slang) but more and more I feel like Ethan’s illnesses and anxiety revolving around it have gotten to me more than I thought. For example, I was at orientation and doing a half day of CPR like I have for other jobs in the past, even in NICU before we could leave with Ethan we had to do CPR. Never have I felt I had to look away, have my heart beating fast, or start to cry from watching a basic, poor acting and low budget CPR video.

I am still positive and feel like overall he will do well, but it is really overwhelming to know its no longer an “if” Ethan will get hospitalized (and not just an overnight trip either. We are talking a week ast least, even with home oxygen available for the tapered oxygen end. Which is now up to 3 weeks overnight when he has a basic cold, by the way.) Those hospitalizations usually involve a stay in ICU sometimes for his history but they actually said they (experienced Picu nurses) were worried he was going to have to be put on a ventilator a few weeks ago…at age 5! for RSV! That illness is usually nothing for older kids and we were told he is so inflamed he could have another bad round if he were to get it in the next 3 months (or something like that…all that information swirls around in my head especially because I am getting it all by text and conversation usually since I started a new job.)

So here we are, trying to find a balance with Ethan’s social, educational, and medical needs (and survival) It is not us being dramatic but rather doctors telling us he does not need to be around kids with snotty noses or coughs. Well if you have ever worked in group care or at a school you know that is basically ALL winter. Last time a lung doc told us she thought he needed to be at home until he is older because of illness, we decided that if we were near a children’s hospital, we would take the bad in with the good so he could be in school/preschool while he gets therapies. Well after that scare in ICU and what even more lung docs with varying degrees of conservatism, we decided if that many of them all agreed he doesn’t need ot be around it, we would do what we could to get him to be in school in hte spring and summer (for prek) and homeschool in the winter so he wouldn’t be in a hospital as frequently. (He has not had therapies in quite awhile because if you get inpatient therapies but you don’t feel your kid is well enough to do so much being around other kids, you don’t get therapy. Which is fine, that is how it is set up. But as it stands, he is already missing a lot of school anyway from being sick and missing therapy. Sitting in a bed and suffering by feeding tube placements and suctioning. Yep it literally and figuratively sucks.

So what a crazy notion-When you think about parenthood, you aren’t thinking about how you will have to decide “If I take my kid to church, is it going to make it so he’s still hospitalized from a cold he got and we can’t go out of town to celebrate our anniversary in two weeks?” or worry about germs from Communion ( I know that’s bad but guys this is what it has done to us…) We try to not worry and everyone says don’t worry, pray, and be happy (ok not really but its like the song. 😉 ) I do believe God has reasons for things. But man this kid and our hearts have been through a lot. I do think that’s one reason Ryan is an RN. If it was up to me, there were times I would have waited to take Ethan to the ER or not gone at all. Or Ryan had to fight to get better treatment for Ethan at the hospital because he was being overlooked or the seriousness was not realized then lo and behold, he was deteriroating and needed a transfer to higher level of care. (The hospital is wonderful overall, but you do have to be on your toes as a parent at any facility.) I can watch for the signs but I’m just saying I think that is God watching out for Ethan by his Daddy being an RN, with lots of ICU experience at that.

I say ward because his room is getting to look more and more like a hospital room. Not be all doom and gloom because I am SO very thankful we have those resources. It has shaved off a day or two or more of hospital stays that he can have up to 2 liters oxygen at home (usually just overnight with colds). So while that sounds great, the flip side is this-you hear the alarms go off while you’re asleep/trying to sleep. Your kid is only 5 and likes to rip the pulse ox probe off his toe, so largely Ryan is forced to lie down with him overnight or ast least to get him to sleep. And I know that a lot of parents do that anyway, but trust me being able to choose whether to do so and have no choice are two different things. So our schedules have often been different so we can adequately keep up with Ethan’s needs and when we are both at home, we might not even share a bed for the greater part of a few weeks because of all this medical stuff. Also it went out the other day so we needed a new cord.

Another thing that might be making his room look a litlte more medical ward-ish is that Ethan might be getting a g button/tube /feeding tube whatever he ends up getting or you call it. He basically is very under height and under weight and he is scheduled to get tested for a growth hormone deficiency, but since he is also not drinking much at all (because super thickened liquids are nasty and like pudding and hard to handle…) he is chronically dehydrated and putting in a tube might be a better choice than jumping to testing, although endocrine has followed him for over a year and recommended it. It may be that malnourishment is just a simpler answer to his lack of growth problem. I cried when a doctor first mentioned it, but there ought to be a way he can still eat food but only get liquids by feeding tube. That would be fine with me at this point. We need him to grow so his lungs can grow well and he can heal and hopefully have a more inclusive life all year long. If me or ryan seem to change our minds about things we attend or don’t attend with Ethan please understand we are not being flaky and we are just trying to do what is best for him. Sometimes that might change based on what we know or even what we feel. We try to think of what Ethan would want as well since he doesn’t talk a whole lot. I know kids shouldn’t make those choices but you do think about that some when it comes to 6 weeks of hospitalizations or doctors’ visits per winter vs one per year. He likes school but he likes home too and he has become very anxious about the hospital. So much so he screamed when i showed him a little girl’s picture because she went to his school and she got sick and was even smiling in the picture. the yellow hospital gown scared him and the bed and oxygen tubing . He knew where she was.

Ok this is really just venting and like purging, really, but I don’t care. Another thing that is so hard is every hospitalization is a battle, some more than others, to get staff to listen sometimes. They are good at their jobs for the most part, and some know to go with what we say because we know our child best-but because of delays or people not listening to us, he gets painfully constipated every visit.

So yea that’s why we have moved to different cities and apartments like we are running from the law (lol) because something happens that we thought was behind us and we have to make decisions based on what we currently know.

So we currently know he has chronic lung disease, is malnourished in some ways, and me and Ryan combined at least have PTSD.
Again, these are not all things kids with “just” Down Syndrome have so its really not about that. Like I’ve said in past posts, it can happen to any kid hypothetically. Some of his airways traits that can go along with DS do not help matters, but I don’t even think quite as often about the DS to be honest. At least not when we are dealing with an illness and figuring out interventions for him.

He is making progress developmentally and we will continue to work on that as we are trying to cooordinate outpatient therapies for him.
One thing for sure I know is he is all worth it.
This post/journaling is all over the place but basically it is hard to let it sink in that something is going to be around awhile and you don’t know when an end in sight is. Things have been so hard and socially isolating for us as parents that I reallly just want to kick something or lie my head down and cry. There are no simple answers and us as the parents have to come up with that. We put prayer to it and do what we feel led to do but any decision we make is scary and frankly none have come up with the outcomes we 100% wanted except that Ethan is still with us. And for that we can be truly grateful. He is maturing and putting his dishes in the sink and saying more words and being very affectionate to his little sister. He is not perfect but I’ve complained about his medical issues enough that it wouldn’t be fair to talk about other things. He’s a good kid.


You Know You’ve Spent a Lot of Time in the Hospital When..

A lot of these could apply to if you or a parent or other loved one is in the hospital, but mine is mostly geared toward things you will notice or become accustomed to if you have a child in the hospital.

1) You start to grab a jacket (even in summer), snacks, and water on the way out the door to the emergency room. Hey, you’ve done it before-you know whether a minute to grab those is going to make a difference. And you know how cold the ER is along with wait time.

2) You don’t need reassurances anymore about procedures like X Rays, feeding tube placements,or respiratory treatments because you’ve seen it all already.

Ethan and his Dad hanging out on one of Ethan's shorter, less dramatic hospitalizations (aspiration pneumonia, one night)

Ethan and his Dad hanging out on one of Ethan’s shorter, less dramatic hospitalizations (aspiration pneumonia, one night)

3)During said procedures, you go ahead and volunteer to hold your child’s limbs in place so the procedure can be done quickly and correctly without extra kicking from your kid interfering.

4) Instead of calling for a nurse for everything, you try to spot oxygen adhesive dots or IV tape and try to do it yourself before you call (if its in an open public area. Not advocating for rifling through the nurses’ personal workspaces lol)

5) You’ve had just about everything they will ever serve in the hospital cafeteria and know what is tolerable and what is just gross.

First time to hold him after heart surgery. He was there 7 days.

First time to hold him after heart surgery. He was there 7 days.

6) You have made it into at least one public service announcement or brochure for the hospital.

7) People on various units see you and say, “Now you look really familiar” or “Your child’s name is so familiar…you’ve been here before, haven’t you?” Or depending on the staff or unit, they don’t even have to think-they just run up to you betweeen patients and say, “Hey! OH, he’s grown so much! What are you guys in for again?” Or “sorry I haven’t said hi, its just been so busy. But I wanted to come over and see you guys!” Its nice to be reunited, yet  its also like “oh my…our lives.”

8) You are able to direct lost parents around te hospital better than some staff because you have been to nearly every unit as well as almost every speciality outpatient clinic in the hospital.

9)You can help other parents compare notes on who is best at finding tiny veins for blood draws and which doctors are reliable (or not).

10) You aren’t phased by holding a baby with cords. It doesn’t scare you or make you nervous, but still are annoyed by it. Its always annoying. That hasn’t changed for me . 😉


Hats off to the NICU Moms and Dads-What is REALLY different about having a baby in NICU vs. The Usual?

With lots of my friends and family having babies on the way and with my baby turning three, I have been reflecting on Ethan’s first days with us which were in NICU.I’ve already written about our experience a little, but I got to thinking about how different it really is to have a baby in NICU besides the obvious things. I am happy for those who get to have a normal experience because they will never know how “normal” it really is. I know it’s never easy to have a baby and adjust to that and let your body heal, but the moms and dads in NICU deal with so much more. (We were there only 3 weeks since it was for surgery recovery after birth, but I know n spend MUCH more time there!)

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

To help share a laugh, an understanding, and to give others perspective into what that is like for parents, I give you this post. (and a lot of it will be what the moms go through since some is about postpartum stuff and this post is written by a mom-fair warning ). Also, while I appreciate all the NICU does to make parents feel welcome, there are just some things that are tough no matter how you look at it, so please NICU nurses and staff don’t take offense if I sound like I’m complaining.

As an NICU parent (mostly mom)

1) You most likely unexpectedly are going to an unfamiliar place or an unwanted place. (No one wants their kid in the hospital right away.)

2) You walk a TON (unless you wise up and get someone to wheel you around in a wheelchair.)

3) Speaking of chairs, instead of lying your newly post-partum self on a bed or couch to feed and enjoy snuggles with your new baby, you get an awkward spinney chair, wooden rocking chair, or some other sterile chair. Sterile usually=uncomfortable! (I assume that’s the reason for the less cushy chairs. Either way, it ain’t La-Z Boy.

4) Since you have to come to your baby, you have to get up and down off the said awkward chair with your quite possibly (A)sore lady parts (B) sore C section tummy or (C) just plain old tired postpartum self. Reasons for getting up super often in NICU include needing to go to the bathroom, needing to let someone else come back to see the baby (or letting them-needing is not really true), needing to go pump because there is a special room for pumping at the hospital and even if you somehow are allowed to use your own pump in the room, you still have to go label and put away your milk in a freezer outside the NICU. Also, I was just falling asleep while holding my son and simply had to leave for a little while. which stinks because if you don’t spend the night or can’t, you have to go back home or to a relative’s house to nap then its much more work to get to see your baby again than if you were just at home and could walk in and peek in on your sleeping baby.

5) Speaking of the practical difficulties of going back and forth while your child is in NICU, you also have the (probably more obvious) emotional baggage and disappointment after waiting so long for your child and then having such space between you and your child. The GOOD thing is, I just saw that our children’s hospital now has a way to view your child continuously via webcam or something similar. At first I was so jealous for the new NICU moms but then I wondered if that would have made me more hysterical to see my baby but not be with him. I don’t know.

6) You can’t always catch your baby awake. My kid was asleep allll day while I was there then woke up at night (I knew this because my parents would go by after they got off work.) Maybe he wondered where I was or something. Also he had slept. ALL. DAY.

7) You get to bring all that lovely postpartum stuff with you to the family locker room for NICU. Hot Dog! A “tear care” kit that takes you several minutes to get through that you put in a giant purse and use in a public restroom all day?!? Sign me up! :/ One of those things that’s not fun for any women postpartum, but you have no idea how nice you have it until you carry that “peri bottle” or whatever the heck people call it around with you into a public bathroom. (Where yes, you even have to wait your turn sometimes!)

8) Speaking to more postpartum stuff that is a special challenge in NICU is the fact that there are tons of faces in there-granted, mostly babies but often other parents and many nurses and doctors rounding. I’m sure some would think “hey, that would have been nice to have some help and guidance with our newborn. And you get to go home and take naps.” To those people I say…shut your filthy mouth haha okay kidding (kind of) but its no walk in the park to have one of the most emotional hormonal times in your existence to have an ongoing crowd of spectators. Not that they don’t mostly respect your space because generally they do.

But that’s not really the point. You don’t get the option to be alone with your child until they are discharged from the hospital. Even in a regular hospital stay after childbirth, nurses go in and out. I had to try to get over that and tell myself I wasn’t going to wait until my son was a month old to sing to him. Luckily I can carry a tune okay but even if I couldn’t, I would have said “forget it” and sung off-key for my baby anyways!

9) Another thing about the crowd of spectators: If and when you get to practice breastfeeding, they bring out a partition and I felt I was expected to cover up ( I mean, they brought a partition. Which is fine, I already felt awkward doing this in the wide open room.) I even had a visitor (female relation but still) back and ended up getting frustrated and taking my cover off for practicing once. The last night we got to room in with a private room (to make sure we felt comfortable caring for Ethan and that he didn’t require extra nursing care, etc.) I was not about to leave the room to go use the hospital breast pump room since I had my own from home. (As you guessed, the breastfeeding didn’t work out. Ethan maybe could have done it, but he had a heart defect, etc. and it was just complex so we decided I would pump) Anyways, I wasn’t about to leave the room when I FINALLY got to have a night with my 3 week old child, so I was pumping with a blanket covering me and this doctor looked at me all puzzled like “what is that sound?” I don’t know if he disapproved or was just plain confused, but he kept glancing at me and I just gave him a “I’m an NICU mama bear-don’t even try to tell me to leave this room or remind me about the hospital pumps or I will rip your face off” look (ha kidding. I’m sure I looked awkward and all sweet.) But I didn’t care if I made him uncomfortable. I had been uncomfortable and nearly depressed for 3 weeks.

10) Yes, the NICU parents still are sleep-deprived so don’t even go there-thinking if the baby isn’t with you, you sleep more. Its called A)pumping and B)parent anxiety and depressed mood and C)special medical needs. Same goes for kids with special needs/heart defects. You get up often to feed on a doctor-regimented schedule until 6 months old/heart repair (heart baby like Ethan). okay, the last one doesn’t apply until the day you room in with them, but the first two offer PLENTY of sleep deprivation, just like with any parents who got to take their child home. Many times it can be worse because of all the anxiety and depressed mood; not getting great sleep even when you can sleep.

I hope I didn’t scare anyone who anticipates having children in NICU once they are born. There have been strides to make it more comfortable and home-like across the board. They let me change diapers, give sponge baths, etc. I had many happy moments, and the best you can do is enjoy your time with your child and make it like home wherever their home ends up being for the first few weeks. I also recommend keeping mementos from NICU as you will have mostly mixed feelings about it, but with those mixed feelings will be some fond memories simply because they were the first. Here is the shadow box I did for Ethan where we included some NICU mementos.

Share in the comment section anything you would add to this list-comical or serious-that makes NICU a special challenge. I haven’t experienced a typical trip home after birth, but I don’t feel like I have to know these really are some unique challenges! I have seen other people’s birth and homecoming experiences. Much different. I’m glad they didn’t have to go through it the way we did BUT hey those babies are worth it!

If you liked this, check out other links in the “hospitalized child” category!

National Heart Defect Awareness Month 2015

Happy Heart Month! I added some cutesy hearts and a hashtag where I plan to add another shareable image here and on the Better Than Expected facebook page (Like is if you haven’t already! 🙂 )

chicks dig scars with heart stat heart month

I will share last year’s post about heart month. I will also share our story of the journey of Ethan’s heart repair when he was not even a year old!

Ethans flexing and tough face 2 years post open heart surgery (av canal defect)

Ethans flexing and tough face 2 years post open heart surgery (av canal defect)

Interestingly, Ethan’s echocardiogram (like an ultrasound of his heart) is in February, just after Valentines Day. Praying all is well!

Ethan’s Birth Story-From the Dad’s Perspective

first family photo edited with watermark

July 2, 2012 has forever changed our lives. This seems an obvious statement to any who have had children, but our experience was different than a majority of births out there. Ours was both joyful and heartbreaking at the same time. For 9 months my wife and I prayed for the health of our son, that he would be strong, and be a light for our savior Jesus. Each night before we went to bed we prayed that God would use our sons life to reach those who don’t know about him.

I can now say that he most certainly has done just that, but in a way that was most unexpected. It reminds me to be cautious about what I pray for because it just might be answered in a way that I didn’t see coming! It taught me to be prepared to serve the Lord however it is he calls me to, and be ready for whatever circumstances that it surrounds.
The day Ethan was born was interesting from the start, but to get a full picture I want to go back to July 1st, my wife’s birthday. We had traveled from Conway to Sherwood, about a 45 minute drive, to celebrate Natalie’s birthday. She was having pain that we thought most likely was just due to a uti as Ethan was only 36 weeks along. Natalie has had several uti’s by this point and we just thought this was a rather bad one. We finished celebrating my wife’s birthday and drove back to our house, and this is when we began to suspect something might be amiss. Granted I didn’t think she was in labor, and we will get to more on that later. Every time we hit a small bump in the road Natalie would groan with pain. I thought to myself man that is one heck of a uti we had better get her to the Doctor tomorrow morning asap. We got home and promptly went to bed. Natalie was having quite a bit of pain still so I slept in our spare bedroom so that she could have free reign of our bathroom, and bedroom if she needed it. At one point she comes in saying “I’m hurting really bad”, and me being the brilliant nurse that I am said “It’ll be ok sweetie we are going to the doctor in the morning” not realizing that she was in labor! In my defense we had already made at least 1-2 trips that week to labor and delivery suspecting that she was in labor.

I believe that later that night Natalie’s water broke, but again we attributed this to Natalie having a uti and not her water breaking. I think even Natalie would agree that her description of her labor pains did not subscribe to typical labor pains. We got up early the next morning, or rather I did as Natalie informs me that she didn’t really sleep, and went to chick fila and got us some breakfast and proceeded up to the hospital. Fast forward an hour or 2 and Natalie is now in a room and we are waiting on the Doctor to come in and check her. As soon as the doctor walks through the door she notices Natalie looks pretty rough and decides to check her to see if she is dilated. Come to find out at this point Natalie is 6 cm dilated and we will be having our healthy baby boy today!
Words cannot describe the excitement we had. We had waited 36 weeks to meet our child. All our ultrasounds showed Ethan would be healthy and by all means what we experienced in the pregnancy did nothing to change that. We were so excited and called our parents and texted our siblings that there would be the first Grandchild in our family today July 2, 2012.
Natalie got settled in and got her epidural and finally rested for about an hour or 2 before having to start pushing. By this time my parents and Natalie’s parents are at the hospital and our siblings are making their way to Conway to be present for the baby’s arrival! At 7pm Natalie begins to push, and push and push. I’ll never forget her wanting to panic and stop she wasn’t sure she could do it. She was so tired that she couldn’t stand it any more she hadn’t slept in over 24 hours and was now trying to deliver our son. An hour passes by and Natalie has delivered Ethan. I was expecting to be elated to see my son come out and crying and seemingly healthy with no problems. As soon as I saw Ethan my heart sank into my gut. I thought something didn’t look right. Ethan’s neck was to short and thick, but I quickly chastised myself saying in my head “Its nothing, all babies look weird when they are first born Ethan was just in the birth canal weird that is all”. So I kept trying to reassure myself that nothing was “wrong” with Ethan.

The Nurses within the delivery room quickly took Ethan away to do his cleaning and apgar scoring; however, I noticed they were surrounding him to much, blocking my view for slightly to long, and talking to each other quickly and quietly. I walk over to them and ask if everything is ok, “Is Ethan alright”. They quickly, almost to quickly, assure me that Ethan is fine they are just cleaning him. So I snap a quick picture of him and text it to my family saying “Ethan is here!” all the while thinking he doesn’t look “right”.
I walk back to Natalie and show her Ethan’s picture and comfort her while she rests. The rest of the evening is all jumbled together so if I get the sequence of events out of order I apologize. Next we let our parents come back to get a quick look at Ethan, and after they leave I walk out to go get our siblings to see Ethan for the first time in person.
When I got back to the room I entered first to make sure all was ok and Natalie was decent. As soon as I walked through the door my world shattered, I saw a pediatrician sitting on a chair, Natalie crying, and I thought “Ethan is dead, there was something wrong, I have lost my son… I didn’t even get to know him or feed him” I stop our siblings from coming in and told them to wait outside the door. It wasn’t until later that the Doctor suggest the siblings wait in the waiting room. It feels like an eternity walking to Natalie’s bed, sitting down, and letting the Doctor deliver the news I surely thought meant my son wasn’t alive.
The Doctor looks at us calm, but sad and begins to say “I am sorry to tell you this, but I think there is a 50% chance that your son has Down Syndrome…..You can yell at me, cuss me, if you want I understand. I am sorry to bring this news to you. We are going to run some tests, and this could take several days to get back and know for sure. Ethan has some of the physical characteristics, but not all for Down Syndrome I am hopeful he doesn’t have Down Syndrome”

Needless to say Natalie and I were utterly devastated. We didn’t know what that meant for our child. We never got a report that something looked wrong with him on ultrasound, and that he may have a disorder that in our current frame of thought would doom him to a life of inadequacy and loneliness. We wept for him, for us, and for the child we thought we had. We lost the idea of a healthy child that would grow up in our minds “normal”, no challenges, and all the friends in the world. This is the thought, the idea, that we lost and it was a devastating loss. It felt like the loss of our child. So we cried for what seemed like hours, but was actually only a few minutes. After we collected ourselves I knew I would need to go and tell our families what we were just told.
I made sure Natalie was ok for me to leave and talk with our family, and left for the waiting room. I kept wondering what I would say, how I would keep my composure, and what the reaction would be. I walked out and saw all our family waiting. I walked up to them and just fumbled it out “The Doctor thinks Ethan could have Down Syndrome.” The effect was immediate, everyone was shocked, everyone was sad, and everyone was worried. I knew this would be the reaction, and I thought I had prepared myself. I was simply in shock or I would have broken down right then.
I excuse myself back to the room, and wait for Ethan to be brought back to us. After we finally get to see him again we prepare to let the family come back. Once back everyone made an effort to dote of Ethan, and try not to mention the Elephant in the room. They made sure to show they loved him no matter the challenges that he would come to face, and smiled, laughed, and took so many pictures. They were so happy to see him. It made me feel that everything just might be ok.

I walked down with my parents and siblings so I could get out of the hospital for a minute. We got to their car and I just started crying and asked them “who is going to watch over him when we die, who will be his friends, what is his life going to look like?” There were of course reassurances but to me there were no answers.
After everyone had seen him and dispersed back home we decided to try and get some sleep. We had Ethan at our bedside, and lights off. At this point all was quiet but Ethan. I kept hearing him spit up, and I knew that this wasn’t normal but I thought maybe it won’t keep happening. It did Ethan continued to spit up bile. I finally decided that we should call the nurse and tell her what was going on. By this time it is nearly 10 o clock at night, and they took Ethan for an Xray of his stomach. He was gone for nearly an hour when the Pediatrician came back a second time and I knew there was no escaping it. The Pediatrician sat down again and said “I think Ethan has duodenal atresia which means his stomach is either not attached to his intestines or there is a membrane separating the stomach from the intestines. We cannot treat that at our hospital, and I have called Arkansas Children’s Hospital to come and get Ethan and they will most likely need to perform surgery. When the physical Characteristics and duodenal atresia are present together it is near 100% chance that Down Syndrome is present as well. I am now certain that Ethan has down syndrome. We will of course be sending off the blood studies to confirm it but I do believe that Ethan has Down Syndrome. The med flight team for children’s will bring Ethan to the room before he needs to depart, and once he arrives at Children’s the attending NICU Doctor will call and update you on Ethan’s status and answer any questions you might have.”

He again apologized and left, and we were left alone knowing soon our son will be at Children’s away from us, and away from anyone who could care for him for the time being. It was only a few minutes 10 to 15 tops before ACH flight team arrived with Ethan in our room and I asked if my wife could please hold Ethan just 1 more time before he was flown to ACH. I am so thankful to the flight nurse because they unhooked Ethan from all the monitors and brought him to Natalie to hold for a few fleeting minutes while they prepared the paperwork to go.

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

They informed us that Ethan would be inflight for about 15 minutes and that the Doctor would call just as soon as he gets settled into his bed. They then took Ethan and left leaving us feeling alone. I encouraged Natalie to try and get some sleep I would let her know when they called, because by this point Natalie had not slept in almost 36 hours but she wanted to wait until she heard from ACH.
I called my parents and asked if they couldn’t come back up to the hospital and stay with us until we hear from ACH and so they did. They prayed with us and when the doctor called they left to give us privacy. The NICU doctor informed us that Ethan had made it to the hospital safe and sound, was doing well, and did almost 100% certainly have Down Syndrome. He delivered all this news with kindness which I am thankful for. He then went on to say “Ethan will need to have surgery to repair his stomach so he can begin to get nutrition into his body. Without this repair then there is no way he can get food. The surgeon will call in the morning to go over plans for surgery”
After the call with the doctor we were finally able to lay down. I encouraged Natalie to try her best to sleep, but even so I could hear her crying every once in a while. I lay awake the whole night wondering if it was my fault. Wondering “Is God punishing me for something I did? Why is this happening to us? Haven’t we been through enough?” I asked all these questions all night long. Finally around 5 am the obstetrician comes in and says that she is sorry for the news, and that she is going to discharge us early so we can get to Children’s as quickly as possible. I knew that Natalie hadn’t slept any and that someone should be with Ethan while I took Natalie home to rest. So I called Natalie’s parents and asked that they please go be with Ethan until we can get there as I needed to get Natalie home to sleep for a few hours.

After being discharged from the labor and delivery unit, we went home and got showered up and laid down to try and sleep while we wait to hear from the surgeon. Once completely alone in the safety of our home Natalie and I hugged and simply cried for a solid 5 minutes. The previous night was just to much to take in, and so we cried. We didn’t talk or reassure each other we simply cried, and after we let go of all that built up emotions Natalie was finally able to sleep, and I felt like the mourning period was over and we could be hopeful for a change. It seemed a turning point for us and our view on Ethan’s so called “problem”. I was so relieved I couldn’t sleep so I left Natalie in our room and went out to the living room and watched TV until the surgeon called.
The surgeon called to get consent to do a surgical repair of a duodenal atresia repair and also informed us that Ethan had a medium to large Ventral Septal Defect in his heart, but they felt they could still do his gastric surgery safely and it was important enough that they needed to proceed on with his surgery so I gave consent over the phone for his surgery and felt some comfort knowing that Natalie’s parents would be with Ethan while they took him to surgery and we would be there when he was done.

After 3 weeks in NICU, we got to take Ethan home! Here he is with his Daddy.

After 3 weeks in NICU, we got to take Ethan home! Here he is with his Daddy.


As we all know by this point Ethan made it through his surgery fine, spent 2 weeks on the ventilator post op during which point he earned a flat spot on his head that would require a helmet to fix, and we found out the day before he was discharged that the “medium” sized hole in his heart was actually rather large, and there was also a atrial septal defect that would probably need surgical repair in the future. It turns out at 6 months old Ethan would undergo extensive open heart surgery to repair not a Atrial septal defect and a ventricular septal defect but a Atrioventricular canal defect that took 6 hours to repair.

Ethan was only in the hospital for 1 week after this, but the real challenge was still ahead with the flu which Ethan barely made it through. If Ethan had gotten the Flu 9 week earlier he would have died. The only reason he has done as well as he has was because he was a heart baby and his heart was repaired. If he had not been used to lower oxygenation things would have been a lot worse than they were. We were so very close to loosing him, and we are so thankful that God timed it just right so that Ethan could survive!

This post is one of the hardest ones I have ever written because it reminds me of the hopelessness and loss we felt on the night that Ethan was born. We were so ignorant of what true blessing Ethan would be in our lives. We have come to understand Down Syndrome better than we every could had we not had a child with it. It is normal to feel utter devastation when you get a new diagnosis of DS and have no idea what is out there. There is so much community support present now that we have no fear that Ethan will have no friends, the developmental care Ethan receives is top notch, and Ethan himself is the most amazing, driven and talented child I have ever laid eyes on.

Nothing has come easy for our son. His very life has been put into jeopardy, he struggles with what would be easy for us physically, and he struggles to talk. Yes all these things are difficulties that he has to overcome. He may cry when we make him work on something he struggles with, but he never stops working towards it, he never gets angry at his challenges. He laughs and moves on, and when he gets it he gets it. He isn’t worried by what he can’t do, but enjoys all that he can! He is stronger than any I have known. He is so full of love, joy, and kindness even at age 2 and a half it astounds me. I learn from him to love others, and to be better about wanting to persevere even in a situation that seems impossible.

I am so beyond thankful for Ethan being who he is. I wouldn’t change a thing about him. Ethan is who he is, he is not his diagnosis. I encourage everyone to please look at children and people with Down Syndrome as PEOPLE. Don’t look at them and be scared because what you see is Down syndrome people that are so very different from you. That is so wrong, People with Down Syndrome are more alike than they are different. Where Ethan can’t talk and express what he wants with words as easily as a “typically developed” 2 year old Ethan signs what he wants and conveys it just as easily and quickly as anyone else. When he struggles to get something off a shelf because he has trouble walking or crawling he would invent new ways to get there. He is more alike to us than he is different no matter his delays. I am so proud to call him my son. I am so thankful that Ethan is the way he is. I couldn’t ever be happier and more proud of my son. Thank you Jesus for him.
Ethan and his Dad hanging out on one of Ethan’s shorter, less dramatic hospitalizations (aspiration pneumonia, one night)[/caption]
I also wrote this post for you Father’s out there who are hearing this diagnosis for the first time. I want you to know its ok to be angry with God, its ok to be devastated, and its ok to mourn the loss of what you thought you were going to have with a child. However, don’t get lost in this remember that your new child will bring you just as much joy and pride as any other child could or would. Take heart in knowing that your child will get to live a mostly normal life! Fall in love with who your child is not what they have.

God Bless,
Ryan (Ethan’s Daddy)
To see Ethan’s Birth Story from his mother’s perspective, click here.

Ethan’s Newborn Shadow Box..Consider Keeping NICU mementos!

If your baby starts out in nicu, you may not think you want anything to remind you of that time. my suggestion is keep mementos anyways then decide later! I'm proud of all Ethan has come through, so I chose to put his ear buds from the medical helicopter flight to commemorate this.

If your baby starts out in nicu, you may not think you want anything to remind you of that time. my suggestion is keep mementos anyways then decide later! I’m proud of all Ethan has come through, so I chose to put his ear buds from the medical helicopter flight to commemorate this.

Did Ethan’s newborn shadow box today! I may or may not add a picture of him in his homecoming outfit..or a tiny one from NICU. Feel like its pretyy full already, we will see!

I bought the shadow box from Hobby Lobby regular price, around $40. It has burlap backing and has a magnetic door that just opens if you need to add something. Also, I used floral (or “corsage” pins from Michael’s) to pin the items to the burlap.

Tips for Parents of the Toddler Tonsillectomy Patient

Similiar to our post about tips for hospitalizations in general this includes more tips that can apply to any hospitalization but is mostly specific to hospital and home care for the tonsillectomy and adenoidectomy patient. Our son was two years old and mostly pre-verbal when he had this done, and he also had a Microlaryngoscopy and bronchoscopy (MLB) procedure done to detect airway abnormalities that can be common in children with Down Sydrome

The way I’ve structured this is longer descriptions up front, so if you want a Quick Tip List, you can scroll down! I liked reading more detailed descriptions when I was trying to see what the process was like for others and how they coped, but they are summarized in the list QUICK TIPS near the bottom of this post.


Playing on his nabi jr In pre op room

Playing on his nabi jr In pre op room

Something I absolutely recommend for children who will be having to stay still and waiting a lot in the hospital or otherwise having a lot of wait time in which you want them to stay put is the Nabi Jr. tablet. Ethan’s grandparents got it for him for his second birthday, and it has been a big help when he had to stay put and wait in the pre-op room as well as post-op when he wasn’t feeling good enough (mostly days later) to do much else. (Also, he needed to stay still in his hospital bed soon after the procedure so he didn’t rip his IV out from bounding around the bed! (day 2) It already comes with flashcards with sounds, games for matching and animal sound recognition, music dozens of books, and puzzles.


First of all, we were told Ethan has Laryngomalacia and Tracheomalacia, but both are mild airway abnormalities that he will outgrow (somewhat common in Down Syndrome, especially boys with Down Syndrome/boys in general, so I hear). I don’t know much about them and didn’t concern myself too much with that at the time because it sounds like he will outgrow it and we can’t do anything about them anyways. It sounds as though they may be playing a role in him aspirating on thin liquids and therefore needing thickened liquids.

The procedures took no more than 45 minutes to my recollection, and we were able to go to the recovery room soon after. Ethan woke up very confused and making sounds with his throat. I’ve heard some say their children bled from their nose, but this wasn’t the case with Ethan. He drank a few sips of thickened apple juice then cried from the pain. We were encouraged to keep trying to get Ethan to drink liquids while in the hospital. Many children go home the same day, but his ENT wanted him to stay at least one night. We were crossing our fingers that Ethan wouldn’t get dependent on oxygen as some kids with Down Syndrome can when hospitalized. He did end up requiring a small amount of oxygen once asleep, but it was able to be removed after a few hours and the nurse attempting to wean him off. Something to keep in mind, however, is that you may need to remind the nurse or ask if your child can be weaned off on a trial basis if they are requiring a small amount. My husband is an RN in an adult ICU and he was the one who thought to have me speak up to the nurse about it, although she indicated this was her intention but she hadn’t done so yet. Definitely speak up and be an advocate-sometimes surgical floors can get busy and you may have to bring something up more than once. Normally we have diapers in the room ASAP during hospitalizations, but I had to tell one or two people before we were able to get him some diapers this time, probably because it was a Friday in a post-op floor. (We had a few of our own diapers, but since I knew they would be provided for the overnight stay I planned to use those when our few had run out/the diapers showed up.)

He really does like playing with his flashcards, I'm not that militant! Enjoyed quiet play of taking cards in and out of his backpack.

He really does like playing with his flashcards, I’m not that militant! Enjoyed quiet play of taking cards in and out of his backpack.

Ethan was still tired from the anesthesia but was later quite alert. The next morning, he tried to rip his IV bag off the pole by reaching through the crib bars! It was pretty hard to get him to drink, but he finally drank enough to be allowed to go home. (Again, this was a stipulation that everyone may not have. Do keep in mind, however, that many children have to return to the ER for dehydration because it is quite hard to get kids to stay hydrated when their throats are so sore. (especially young ones you can’t reason with) Ethan’s ENT does not prescribe any pain medications for going home, which is a change from the past practices I have been told. He only ended up getting oxycodone after being admitted to the ER for mild dehydration on day 6.

The first night home post-op, Ethan slept a TON. He slept from 7:30pm to 9:30 am the next morning! Then he was so tired that he was only awake two hours before taking a nap from 11:30am to 1:30pm, then he was so exhausted that he had to go to bed around 6pm.

The next day, he was lethargic and pretty much laid around wanting to be held and watching copious amounts of Elmo’s World and Mickey Mouse Clubhouse! (Oh yeah, DVDs are also a great gift for the hospitalized and home-bound child!) This evening, he slept a normal amount, following his usual schedule.

Poor thing laid around like this for several days when he wasn't being held and cuddled. Not like him to lie down!

Poor thing laid around like this for several days when he wasn’t being held and cuddled. Not like him to lie down!

NIGHT 4-Ethan woke up crying, even though he was being given round the clock alternating Tylenol and Motrin. He calmed down and accepted a Popscicle made of Thickened Milk after receiving pain medication-Motrin.(For dysphagia-safe Popscicles with Simply Thick beverage thickener–just mix up your liquid and pour into a Popscicle mold (always ask your doctor first-a friend’s doctor told her about this way)-We found a set of molds at Kroger. Ethan enjoyed the Yogurt Popscicle as well. You could make your own pudding Popsciccle as well. He got to watch some Daniel Tiger’s Neighborhood on Netflix to chill out and allow Tylenol to work.

DAY 5-During the day, Ethan was very still and quiet, not his normal self at all. He seemed to find comfort in lying on the floor with his right ear against the floor, whether we were in the kitchen or on carpeted living room. He also wanted to be held all day. This was the case for the first days of recovery, too, but he felt worse on this day. His nose was hurting, which I could tell because he was pushing toys against it and shoving his nose into my shoulder. His breath also got worse, which I believe is due to the scab forming over the incision site (lovely, right?) People were NOT kidding when they warned us of the “foul breath.” It was BAD. I don’t even have a very good sense of smell, but I had to cover my nose with my shirt while rocking him to sleep on this night. Glad he isn’t old enough for that to make him feel self-conscious! On the 5th night, Ethan woke up a lot crying-screaming-and the poor thing had a hard time calming down. It was this night that we finally had suppositories, I think. I highly recommend that because it seems like his throat hurt worse at night. I have read that this is mostly due to the throat getting dried out and it hurting the scab more. It became very difficult to give medications by mouth, and he was hurting so much at this point in the recovery that it was VERY important for him to get ALL of each medication dose on time, every four hours. He had breakthrough pain which we couldn’t do anything about at this point. It was sad. 😦 The pacifier and Daniel Tiger’s Neighborhood show on Netflix is what we had to use for comforting and distraction until the Tylenol took effect. (I don’t usually recommend television to comfort, by the way, but it can be a wonderful distraction when little ones (or at least my little one) is in pain.)

It was extremely challenging to get Ethan to drink anything on the 5th day, even after pain relievers should have taken effect and the drinks were chilled. (We chilled the drinks during the entire recovery.) Unlike some kids, Ethan doesn’t like sugary drinks or snacks at all, so it was mostly “milk or bust” for him during his recovery. I think he drank hardly over 10-16 oz that day, maybe less. I know he only had 8 oz up until bedtime then wouldn’t drink anything the next morning.

DAY 6-Ethan was very lethargic and was starting to get a dry tongue from mild dehydration and still wouldn’t drink anything, even when trying to pour some in with a cup (it worked earlier in the recovery to get him started drinking for one bottle (He is still in the learning process with cup drinking, so it’s mostly bottle drinking we were having to encourage during recovery.) We didn’t have to wait much at atll in the ER because it was early on a weekday, and since he was only mildly dehydrated, he was given a pain medication mixed with Benadryl and Maalox (with equal parts, 2.5 ml and 2.5ml) as a numbing throat rinse. *Although this remedy was helpful to us, we were given instructions from a doctor based on our child, and you should always talk to your child’s doctor about giving medication first. Something to also keep in mind is that most kids are not given anything for pain once at home from what I understand. In the past, our son’s ENT (and other ENTs) would prescribe strong pain medications after tonsillectomies, but that isn’t the case anymore. The only reason we were given a small amount of this pain medication is because we was almost on the verge of needing IV fluids and hospital admission. *The doctor said the throatwash was meant to coat the throat and allow him to feel good enough to drink. A friend had told me about that but I wasn’t sure of dosage and couldn’t see how we would get it down him. We were concerned about Ethan aspirating, too, seeing as he choked down the Motrin we forced down him two nights before. He was surprised enough to accept it from the nurse in the ER, however, and drank nearly 8oz of milk about 20 minutes later. We were given a prescription and went home thinking things would be easier.

In a way, the drinking came easier, but the recovery was not necessarily “easier.” What became the most stressful for everyone involved was giving the numbing throatwash to Ethan. It hurt him and scared him, and he put up a BIG fight each time. It was quite traumatic. When he was better and Ryan and I were watching Harry Potter and the Halfblood Prince movie, I said, “Oh, this is exactly what it was like giving Ethan that medicine” during one of the end scenes where Harry has to make Dumbledore drink from the basin with the seashell when trying to get the Hoarcrux. It’s hard to convince a toddler something that is uncomfortable will make them feel better in the long run! Ethan would calm down after getting the throatwash, though, and would accept his pain reliever better after that (at first, we tried combining but that didn’t go as well so we gave them separately. Seems like the Motrin burned the most from his reactions.) Then SOME of the time we could get Ethan to drink a little afterwards, but it was still rather challenging and he would often put off drinking all day long then finally drink almost an entire bottle just before bed. Poor thing must have been hurting but parched.

Things do get better, but rather than scaring people whose kids will have tonsillectomies, I will just skip ahead and say that the next few days were kind of blur because we were tired and there was lots of screaming and forcing medication going on! The nice thing was that after going to the ER, we could give the pain medicaiton for breakthrough pain between Tylenol and Motrin doses. We always did Tylenol suppositories (never more than what the allowed dosage is for 24 hours, though) at night and encouraged fluids.


1) Plan for a two week recovery. The doctors did tell us this and said “keep child at home two weeks” but didn’t go into detail about how much children wake up in the night (I’ve heard this from other parents too). Which leads to that next tip which is..
2) If possible, have someone trade off night shifts with you so everyone can stay as sane as possible! Another way to stay sane is..
3) Have some good indoor (quiet) activities for everyone because even if you are a stay at home mom like me, not having the few little errands or usual routine to leave the house for can be difficult! We asked my parents to come so we could go on a walk, but poor Ethan had to just be inside, hurting. Even once he felt better we kept him inside just to be sure he didn’t get infected or the heat didn’t make his throat swell. So once feeling better, new or not as often used toys and low-key activities work great!

When he was feeling better, we made a "little and big" folder with big and little animal stickers that we had on hand. One of those things to pass the time and learn! Being cooped up so much, he needed something different to spice things up.

When he was feeling better, we made a “little and big” folder with big and little animal stickers that we had on hand. One of those things to pass the time and learn! Being cooped up so much, he needed something different to spice things up.

4) Keep pain relievers on time…really! Even if asleep. (suppositories!) If your doctor says its okay, the Benadryl/Maalox combo mentioned above (see Day 6 summary) may be enough to help you force some fluids down once your child’s throat is numb!

Once he felt a little better we still had to get playfully creative to let us come near him with a liquids syringe !

Once he felt a little better we still had to get playfully creative to let us come near him with a liquids syringe !

5) Play close attention to fluid intake and numbers of wet diapers or trips to the bathroom as well as condition of mouth. Also pay attention to signs of constipation if your kid doesn’t want to drink juice..not being on the usual diet can mess things up. It did for Ethan.
6) Use toothbrush or other means to remove thick saliva as it makes drinking and swallowing more difficult and painful. It’s also more stinky if it hangs out in your kid’s mouth I’d imagine!

7) If your kid has limited means to tell you what will help him/her feel better, do some research on what hurts and what helps!

Something that helpful that I read from other young tonsillectomy patients (like young teens) was that putting icepacks on ears, jaws, etc. could be helpful. Since kids said chewing gum helped, I let Ethan have his pacifier as much as he wanted to have some relief as well. I often held ice packs to his ears (which I could tell hurt by how he started shoving toys against them later in recovery), prior to giving a bottle. I read that swallowing makes the ears hurt as well. Since my child is mostly pre-verbal (although he signs quite a bit), it was hard to know how much he hurt, where he hurt, etc. and reading older patient’s tips online was very helpful.

8) To help with weight gain during recovery, you could give your child some Boost or Ensure to drink if he/she will accept it.

On the last few days of receovery, Ethan needed less and less pain reliever and we didn’t give it scheduled anymore. At night, however, he still woke up around 1:30am (same time everynight pretty much) crying even though he felt great during daytime it seemed like. We still kept doing Tylenol suppositories scheduled around 1 am for the last few days of recovery once we realized that pattern held true regardless.

Since I am writing this in the end stages of his two-week recovery, I can’t say yet whether I feel like this surgery has helped with sleep apnea (especially since the apnea was mild to begin with), but I haven’t heard him snoring the past night or so! (It’s normal for kids to snore post-op anyways).

I hope this was helpful and that it doesn’t scare anyone out of tonsillectomies…I have heard it can be very helpful for those who need them! It got so bad we wanted to rip our hair out, then it seemed like all of a sudden there was a calm over our home and the “weeping and gnashing of teeth” left.

Our next adventure is bed-training, or removing crib and getting Ethan to eventually stay put while sleeping on a mattress. We will have to move the tall unstable dresser first. Wish us luck! 😉 I’ll probably say a few words about how that went because I like to see others’ experiences myself.