Close calls, the fallout, and thankful hearts

9 Months Old in Infant Toddler Unit

Originally I had journaled awhile back in thinking of the unique ways having a medically fragile child affected the family but it led me to thinking of how thankful I am I have a medically fragile child rather than a memory of a baby I had for awhile then sent to Heaven. What I mean by that is the issues Ethan has with Chronic Lung Disease, whether he was going to have them from the start or whether they came about or were worsened by his major hospitalization as a baby, could have ended his life back then. Honestly there have Been several times that could have happened but I think Ryan and I both agree that first major stay when he was on a ventilator for a month was the closest call.

So I will talk about some ways the Chrnoic Lung Disease have affected our family while keeping in mind that I am so very thankful that he is with us still.
1) Sleep issues. These are sleep issues that aren’t developmentally normal. It isn’t typical newborn wakings for feedings or even teething and ear infections of infancy and toddlerhood. We did have all of that plus the timed feedings to get him nice and heavy for his heart surgery at 6 months old. (You don’t get to celebrate the baby sleeping a good stretch if you have to go in every 3 hours or more to feed a long forced feeding.) Ethan was certainly a good sleeper, but with the blessing of home oxygen comes the monitoring equipment that beeps, sometimes very often even though we are giving him the intervention the machines are telling us he needs. Sometimes its an error like the toe probe coming of and that is even more irritating because we are losing sleep for something that he didn’t even need and let me tell you he does not always go back to sleep even at 3am!

Also he was an amazing independent sleeper, I’m sure partly due to the fact that he was in a hospital a lot and had noises going on a lot and didn’t get rocked to sleep because he was chemically paralyzed for a month in mid-infancy. Now that independent sleep is mostly gone because he needs oxygen when he sleeps so often that we have to lie down with him to get him to sleep because otherwise he will pull the nasal cannula out and pulse ox probe off his toe. That on top of baby sister being really demanding and waking a lot a couple of years ago added up to not a whole lot of evening time for mommy and daddy! but now that he hasn’t been taking naps as much he’s out faster and we have felt a little more “normal.”

2) Missing social events. Everyone who knows us knows this is part of the deal for us anyway. It’s a personal choice on how limiting you want to be at what times of years, etc Burt also doctors have advised us to limit Ethan’s exposure this year. We are hoping the g button will help with that concern and he won’t aspirate as much. It takes a toll on us spiritually to be missing so many church gatherings however we have started to go to an equppping class/ e group and got to go to a Christian marriage conference recently so that has been a huge boost! OTherwise, unlike for our daughter, any babysitter of any kind or age or knowledge is not enough for the medically fragile child. At least not for a length of time and for our comfort level for almost any length of times which will be even more important when he also has a g button. We have lots of supportive family so it hasn’t been a major issue but depending on what’s going on, it can be hard sometimes. People get sick or have things going on and we aren’t the only ones with kids, after all. If you ever want to bless some family with a medically fragile child and you are in ministry and/or have some experience with special needs kids’ equipment (like speech, OT, or a nurse) then doing a special needs parents night out or just for a friend you know is a huge offer! Our church does that night out thing sometimes and so do other churches in our area.

3)Potty training or other skills or education training-When your kid is medically complex, you spend so much time with your child doing interventions for keeping him alive or going to appointments that sometimes what you are left with you’d like to allow your child to get a say in it. So pushing them to do things is hard and if they also have developmental issues, it is extra hard for them anyway. (Not impossible, and that varies for kids with disabilities-some get it almost as soon as typical kids but for the most part its a long, long process.) But we do it all and so do other parents-because we love our kids. I will add that when your child is very ill in a hospital bed, there is not a lot of leeway for those things and you can focus on speech all you want but the other things go by the wayside. Ethan is like Bambi after each hospitalization with his gait, and we have lost a lot of potty trips in that time.

4)-White coat syndrome-He is also kind of emotionally traumized (not exaggerating) now that he is older and can think all of that though more and remember.

5)counting blessings-Something positive I could say is we do not take our days for granted because we know how dangerously close Ethan has been to death far more than I like to think about. It was mostly when he was a little baby, yes, but also when I went to see him after work in October at the children’s hospital, they told me they were worried they were going to have to put him on a ventilator the way he was moving and acting. A good deep suctioning and prayers kept that from happening! (Deep suctioning-tube going way down, not just the straight tube in the nose, but a coiled one)

To look at where I am now and where I was back then (both of us, but this memory was just me walking in)—I remember sitting at my desk as a new working mom arriving at 8am and before I made any calls or welcomed my first kid for therapy, I cut out a number 9 from construction paper and made a “9 month” card for Ethan turning 9 months so I could take a picture of him with it in the step down unit at ACH. I was so happy he was off the paralytic for that. When he turned 8 months old, he was like a sick, sad tiny Rip Van Winkle and I did not want a picture of that for his baby book. And now look-I go to work and while I know he can get sick again like that perhaps, right now he is 5 years old prepping for kindergarten and enjoying his therapies and I Pad time! I live in the town in which I work, and I get to come home to him and his sister’s smiling faces and see them wrestling together. Yes I have a lot to be thankful for.


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.

Katelynn’s Birth Story-A Second Birth vs. First Birth

Katelynn is not only our Rainbow Baby but also our almost Christmas baby..she was born just a few days after Christmas and I’m glad it ended up that way. Even though I know she will always probably feel her birthday is always a little in the shadow of Christmas, at least it is afterward and not the day of (although I’m sure that can be fun for others and we would have made it work.)

Katelynn’s birth story is so different than Ethan’s birth story (also told by his dad here for many reasons. First of all, it was characteristically faster and easier in a lot of ways as a second birth. In the weeks leading up to Katelynn’s birth I had some contractions but was still at 1cm at my previous appointment. Two nights before her birth I hardly slept with no particular reason, then the night before I had a great night of sleep! The morning before she was born was a Sunday and I had some light bleeding so I thought she might arrive in a day or so. Then I had some mild contractions but I wasn’t sure if I was really starting labor or it was more random contractions. I went ahead to church and the mild contractions continued but I went on with making my grocery list then ALMOST went to the grocerty store then after talking to my husband, I decided not to go. Just after that I had some more bleeding so I called the medical exchange to see if they thought that wa okay. They said

pic by her HP fan daddy. picture property of

pic by her HP fan daddy. picture property of

probably so, but since you’ve had it twice today, go ahead and come in to get checked. We called my parents to drop Ethan off at their house on the way up to Labor and Delivery and we were hardly two blocks before my contractions started hurting more and taking my breath away. Ryan started driving faster and I remember grabbing the “sissy bar” as my dad called it when I was a kid (and what others know it as the “oh #!%!” bar” as he whipped the truck into my parents driveway. HE turned on his emergency flashers on the interstate and he said “yea, you’re in labor” and I had to agree with that!


They monitored me at Labor and Delivery and said I was at a 3 and if I progressed to a 4 they’d keep me but otherwise they would reassess the situation. The doctor never did come in to give her opinion and I started hurting really intensely while watching Harry Potter and the Deathly Hallows on the tv in the room. I thought they would never check on me again and I wonder if the nurse heard me from the hall say “When is someone going to check on me?! I could be at a 5 for all they know!” because she came in 30 seconds later to check me and said I was at a 4. So the plan was for me to be admitted and finally I was and opted to walk to the room. I told the nurse once admitted that yes, I do want an epidural and thought awesome, I’m going to get it sooner than I did last time (because I didn’t realize I was in labor and thought the pain was some problem so I didn’t show up to outpatient until i was at a 6! And it took a LOT of laboring and sleeplessness to get there with my first baby.)

So here we were again watching Harry Potter and the Deathly Hallows , just in a different room, and it became kind of weird to watch as the pain intensified. The soundtrack from the movie seemed even more epic and motivating. Ryan looked at a loss and said “I wish I could do something to help. What do you want me to do?” and really there was nothing. I don’t even get the whole hold your partner’s hand or squeeze them to death because for a while there I was content with his moral support and clutching the bedrails sort of like I was steering the hospital bed. In between contractions, it even made me laugh a little. I was NOT laughing when I was in labor with Ethan because it lasted so long, mostly at home (the early part with no epidural) and I was so frustrated because I thought the pain would not go away for weeks as I didn’t know what it was!) This time I knew exactly what was going on and just dealth with contractions as they came and worsened…and worsened. The anesthesiologist was still not around and I was concerned that I might be rapidly progressing as these things often do with subsequent babies. The nurse apologized and said there were some emergency c sections and finally she checked me and suer enough I had been moving along but I could still get an epidural.

I started hurting more, and I started rocking from side to side as “driving the hospital bed” was not enough anymore to keep me grounded and under control. As I rocked and moaned (in a controlled, patterned action) I realized this was the same thing I remember doing when in labor with Ethan at home, rocking on our guest bed. (I wandered from beds to couches ro recliners throughout the 2 nights-mainly 1-where I was in earlier labor with Ethan.) AS time went on and I still didn’t have an epidural underway or yet in sight, I was hurting a lot and not much was keeping me feeling in control of the pain-it wasn’t out of control yet, but I was getting pretty worn out so the nurse offered something to make them more bearable as I waited. She said “it will make you feel like you’ve had a few too many margaritas.” I wasn’t sure how that felt becaue I’d only had sips of this and that, then drank a MIke’s Hard LEmonade and kept asking my friend “Am I drinking it too fast?” Yep, I’m that girl. 😉 My husband videoed me because I was being ridiculous immediately (Strong stuff!) and was laughing uncontrollably about absolutely nothing between some contractions. I remember the contractions still hurt, but I was distracted and I’m sure kind of numb. On the part of the movie where Voldemort threatens to kill everyone if they hide Harry Potter to protect him, I was giggling as a contraction ended and said “Well THAT’S what you want to hear when you’re in labor!” After Ryan videoed me I asked “Well wait…am I gonna be acting all stupid when Katelynn is born?” and Ryan teased me and said “well, yeah” and then quickly said “I’m just kidding” when he saw my crestfallen face. Then I said “oh good, I was about to cry if that was true!” then actually started crying! I was a mess. The nurse’s eyes got big when she came in and saw my immediate goofiness and it cracked me up. By the time that was wearing off the epidural was finally ready to be placed. ** Just like the first labor, the epidural made me more nervous than anything but all went well. The nurse said to let her know when I started feeling more intense pressure and I wasn’t sure how much I was “supposed” to feel. I don’t remember feeling much at all with Ethan’s birth but it was probably about the same and I was just much more exhausted going in to the hospital with Ethan. I got a tight 8 hours sleep the night before Katelynn’s birth! After feeling prolonged pressure, they checked me one last time and I was at a 10-ready to push!

There is not much to say here-it lasted all of 12 minutes! They had my feet bent up in stirrups which was a MUCH more comfortable and natural way to push than lying flat like they had me at the first hospital. They just told me when it was time to push and I did-I had a better sense of what muscles to use, probably, and had done core exercises prior to getting pregnant. (Afterward a nurse said to not do those in first trimester and I never revisited them but continued my rehabilitative hip and knee exercises.) So I think all of those things played a role in how well the pushing went! Credit goes to the good hospital staff and supportive husband as well! With Ethan’s birth, I pushed somewhere between 45 minutes and an hour-still not bad, but I do think having done it before plus the better positioning and MUCH more energy reserves from a good night’s sleep and shorter labor helped.

The only thing the doctor who examined Katelynn had concerns about was her hip being loose and said its possible she will need a corrective harness for 6 months. He said this can happen quite often if the baby is lying in the womb at an odd angle.

Everything about Katelynn’s birth was fast and thankfully, easy for the most part! While I know there are so many different complicttions and frustrating labor stories that come with any child, the main difference in our surprise diagnosis birth story (Ethan’s) and Katelynn’s was after the babies arrived, of course. I will list them numerically then probably make it a separate post.

A note of caution: I had no knowledge about Staydol, other than knowing other people who had it in the past. (But didn’t worry about it because my husband is an RN and I’m just not generally one to question doctors and nurses especially if it’s something really routine like labor pain management-I’m not saying they wouldn’t tell me, I just didn’t care about asking! HOWEVER-Something to consider ahead of time is if you are offered a pain medication before and epidural, maybe think through if it will affect how still you sit when the epidural needle is being inserted. I remember being concerned that I was going to wiggle too much because I still had those drugs in my system and I did feel a little wiggly and it was hard for me to concentrate. My inhibitions were in that in between stage of having to focus pretty hard to make sure I didn’t say something stupid to the anesthesiologist like “well hey, you’re a handsome one. Much younger than the last one though…I hope you’re experienced enough.” Since I did feel like it was hard to focus on verbal directions and stay still (although not THAT hard, mind you), the incident popped into my head when I was suffering pretty horrible postpartum headaches the first week after Katelynn’s birth. (I couldn’t even sleep for a while some parts of some nights-and I was SO exhausted.) I couldn’t help but wonder if maybe I was wiggly (I don’t think I really was-Ryan and the staff probably would’ve said something.) I do remember there being a few different times the needle had to be inserted and I’m 95% sure the painful headaches were only hormone related because the epidural headaches sound MUCH worse after consulting with a bunch of women including my mother. I say all this, however, to share the possibility of drugs and movement during epidural placement that might happen, I imagine (since they do tell you to stay still, after all.) I wondered if it was the same exact stage of labor I had been in at home and thought hmmm maybe I’m a 6 now? Finally I was checked again soon before the epidural-yep, I was at a 6! So even though I showed up at a 3, I didn’t actually get this epidural any sooner than with my first baby. Oh well, some people are lucky to make it to the hospital with baby #2, right?

Review for “Born This Way” reality show-episode 1

I really enjoyed the first episode-the variance of characters with Down Syndrome as well as the parents and starting to hear tidbits of their philosophies on parenting which I’m sure we will see more about as the show progresses. I used to be a bit scared in Ethan’s first year to hear much or think much on him being an adult, but I want and need to think about it. I especially would like to see more about the community center for people with disabilities as I don’t know much about what they are like. I did work for a company that included this service, but I worked at the developmental preschool associated with it.

I don’t know how much all the young adults represent a cross-section of actual individuals with Down Syndrome, but from what I can tell from my little personal experience in having discussions with adults with Down Syndrome, they mostly seem to have adequate if not great speech skills. That is the biggest thing that seems to be hard and an obstacle for us, as Ryan and I were discussing right now. We want to have conversations with our son and seeing the adults carry on complex conversations is reassuring to us that Ethan will get there, too.

Something else I found interesting is that the one who was struggling with being associated with the word “Down Syndrome” (Elena) was the one whose mother admitted struggling to accept the diagnosis for a very, very long time especially because her Asian culture (not certain where exactly she was from-Japan I believe) was less accepting of such diagnoses than the U.S. I think our kids notice more than we think of what causes stress for us. I am in no way bashing that family, just making an observation.

I will be interested to see how the show, parents, etc. handles the young adults’ dating/sexual/marriage lifestyles. There are so many different components to consider with parenting any child and especially one with special needs. The show gave some future clips to indicate this will be discussed in future episodes. I’m so thankful that regardless of how some families handle it and whether it is how we would handle it-it gives food for thought and allows us to think through scenarios before we reach that stage. I’m all about being prepared and while I love reading and researching, there is something about watching a show that helps me learn and think through things (kind of like videos you watch in school-at the risk of making it sound like a boring task. The show is anything but boring so far!)

To end my little review, I’ll throw out my favorite quote from the first episode: “I feel like I’m the Matt Damon of the bunch.” haha Check it out! I watched it free on

The Rainbow Baby-Miscarriage and Life Beyond It

While this is a very happy time, its another one of those things that did not happen the way we thought it would. This baby came unexpectedly after lots of tragedy and disappointment in the form of two miscarriages while we were trying to get pregnant with our second child. The first one (several months prior to seeing the current pregnancy’s positive test) was a very early miscarriage-what is typically referred to as a “chemical pregnancy”-and we only knew we were pregnant for about a day until we realized that one was a failed pregnancy. It was such a high and low within one day and we hadn’t even told anyone yet, so it was like a quick slap in the face. We weren’t even sure if it was a true pregnancy or a rare false positive somehow, but later the doctor said that it was most likely a chemical pregnancy.

miscarriage blog post photo


The most recent tragic event, however, was the miscarriage that happened at about 7 weeks along. We knew about it for a few weeks and had told our parents, all our siblings, and maybe one or two friends we happened to be around at the time. We bought Ethan a t-shirt about being a big brother to tell my parents about the news. Close to 7 weeks along, I thought it was just some similar bleeding to when I was pregnant with Ethan, but as time went on I knew it wasn’t normal. It was just an awful feeling, calling my parents to watch our 2 year old (Ryan was at work) so I could just lie down and feel and see it all unfold-one of my first nightmares of parenthood from back before I had kids. I really wasn’t sure for a while WHAT was going on and it was the weekend so I couldn’t run up to the doctor or anything and the doctor on call said there’s really nothing to be done except rest and wait to see what is going on.
She said she really didn’t think I was having a miscarriage, but I think she was trying to make me feel better because it really was still up in the air based on my symptoms. My fear was not misplaced, though.

I couldn’t believe after ALL we had been through with Ethan’s surgeries and illnesses and adjustment to our firstborn having Down Syndrome that we had not only one, but two failed pregnancies in a ROW. We started to wonder if something was amiss since I had yet to have any typical pregnancies (while Ethan made it, I don’t consider it a typical pregnancy because he doesn’t have the typical number of chromosomes.) I did the usual panel of blood tests doctors do if someone has had three miscarriages in a row or suspect something unusual. All tests came back normal, and we had no immediate plans to try again. We wanted to have a vacation (with our extended family as planned) as we have yet to have more than a couple of days out of town (if that) since before Ethan was born. We thought we would wait at LEAST six months to try again. We wanted to have some emotional healing, some time alone, some time away, etc. As you know, that’s not how it happened!


Just two months after the second miscarriage, I decide to take a pregnancy test since I was late-negative. I waited a few more days and while I was on a walk I just thought something seemed off and I should test again for obvious reasons (Ryan kinda pushed me to, though. I’m really cheap when it comes to pregnancy tests for some reason.) Then bam-with a faint line, but two lines nonetheless, I holler down the stairs to Ryan, “um…there’s a second line.” Not as much the Hallmark moment as the other times we’ve had positive pregnancy tests but when is a surprise and after such stressful and depressing events, who could blame us? We started getting excited over time and tried not to worry. One of THE most rewarding moments of my life was that first ultrasound at 8 weeks when we were told “strong heartbeat, 159 beats per minute..and measuring just like he/she should!” It was on the same ultrasound machine they used to confirm everything had “passed” after the last miscarriage, so going into that room was scary and depressing at first. What an amazing relief it was! We even got to see AND hear the heartbeat, and it was just one of the sweetest sounds I’ve ever heard. It was one of the biggest reliefs of my life, almost up there with being told Ethan’s heart surgery was successful and we could come back and see him.

If you have never heard the term “rainbow baby”, it is what women who have had miscarriages call a successful pregnancy that follows a pregnancy loss. I looked at a forum about miscarriage support on and saw it mentioned and I thought it a very appropriate term. I know, sadly, not everyone will get a “rainbow baby” and maybe not so soon after a miscarriage like we did. I don’t understand why some seem to have it easy while others struggle to get pregnant and still others get pregnant easily just to lose their pregnancies before they can share it with the world. There are so, so many things I just don’t get but I know that doesn’t change that God is good and He has a plan for our lives. While He doesn’t cause all the horrible pain in the world, He does use what we have gone through to a greater purpose (and sometimes things we can find within our own lives). I hope that is what He can do with our story-about miscarriage, about trusting God in all these extreme highs and lows and unexpected twists and turns in our lives. Our experience in having children has certainly been that way! Regardless of the hard times, we have mostly great times lately. We love our sweet 3 year old and all his uniqueness and hard work he puts in to everything. We also already love our little Rainbow Baby Bean on the way very much.

Abortion and Down Syndrome-Why it bothers me and how you can help change the trend

Abortion is obviously a very controversial topic and its no secret that I am and always have been pro-life to those who know me, but I wanted to say a few things about Down Syndrome and abortion specifically. While there are so many complexities that go into finding accurate statistics for how many parents choose to abort their baby when they find out he or she has a Down Syndrome diagnosis (and/or related heart defects, etc.), there is no question that a very high percentage of people do in fact choose abortion upon getting a prenatal test-whether amniocentesis or the newer less invasive prenatal testing for trisomies (which include Down Syndrome). I consider anything over, say, 50% to be quite high especially considering the parents often were wanting the child to begin with. The reasoning for these abortions is the Down Syndrome diagnosis, which is very sad to me.

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People are telling themselves it will be okay to choose abortion in this case, because the family and the baby is better off to just not live his or her life. I think some people truly do believe this, although some of it is admittedly selfishness in reality. I have read stories from parents who were planning to abort their child but just could not go through with it. Later, they evaluated what they were justifying and admitted they really think they were telling themselves it was for the child’s own good or the family’s own good, when in reality they were just scared and embarrassed about the diagnosis.

Lets say we could look into any of our children’s future, that all issues whether emotional/mental health, social, health issues that would develop later, etc.: Do we as decent human beings really believe that if you can find out there will be a certain struggle to be dealt with, then that person should just not live at all? How many of you readers have a perfect life with no struggles? I think you would be hard-pressed to find anyone who wouldn’t qualify for some kind of diagnosis, some need at some point if not all points in life. So just because these kids with Down Syndrome or other trisomies are just more up-front about it, or I should say medical advances have allowed us to see more up-front what some of the struggle will be, then the chance to live life is just done for that child? Who do we as mere humans think we are to decide what people are worth at 10 weeks gestation (because that’s how early we can tell now with the new test)? What measuring stick are we using to find worth in people anyhow? All questions I’m not convinced doctors and patients/parents consider what to do with a prenatal diagnosis.

My husband and I have also been disappointed to see that some national spokespeople for Down Syndrome not only do not speak against such lack of value and consideration with prenatal testing for Down Syndrome, but that they mention abortion as a “reason” for getting prenatal testing. While they do not likely mean it as an encouragement to go get your baby with Down Syndrome aborted, its concerning that we can’t even count on some major stakeholders to stand up for the worth of those with Down Syndrome. Yes, it does say something about what you think of children and adults with Down Syndrome.

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So lets see, what are we to do about this…I think it means we are to stop acting like we feel sorry for families who have kids with any kind of disability..Really, stop! While those of us with kids who have extra challenges are entitled to an occasional breakdown from being overwhelmed from complications that might arise, we are first and foremost parents. When you become parents, you are in it regardless of what happens. Your child is your child, and you love them. (I hope.) You do what you have to do for your kid. I used to feel sorry for people in a way when I saw a parent with any kid with a disability, but now I know better. I can be wrong about some parents, but I no longer assume that they wish things were different or don’t find joy in their children. (I’m not saying I always thought that, but the view is different from this side now that I have a kid with Down Syndrome.) I get when people say that our kids with Down Syndrome will bring us happiness and what not, but hey you don’t have to tell me! He is bringing me joy now, from his first breath ( or really from the time we got a positive pregnancy test over 2 years ago!)

Please share this post as it is an important topic that is often discussed too late.

-Natalie, Ethan’s Mommy

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.