This entire experience, while one of great growth and education, is emotional. The emotions are for this baby and for ourselves. They swell inside me at different points in the day and can be very overwhelming. One thing that helps settle them is the knowledge that everything will be OK, which I truly believe, no matter what happens. We have faith that things will work out the best they can and everyone will come out better on the other side. In that faith is the understanding of the situation. An understanding that has come from many trips to the doctor, exams that, while not necessarily conclusive, have painted a clear picture of the situation at hand. One test that, according to the two people who we seemed to be trusting most with it, is  99.9% accurate, so there is a lot of evidence to base our understanding on.

Now, as I alluded to the other day, we had a very emotional trip to the doctor on Friday. It wasn’t emotional as in sad, but more emotional as in it stirred us up quite a bit.

First of all, we went to this appointment to check on baby boy’s kidneys, which in the Level II ultrasound had shown larger than normal and that was a concern. It’s also consistent with Downs, though not exclusive by any means. Quite common in fact. The big concern is that the kidneys aren’t functioning properly.

At the exam, they did another complete ultrasound, not just kidneys, including measurements and checking all the stuff that got checked originally…that seemed odd. During the exam, the technician made a comment something like “so we did the Verifi (the chromosome test that concluded the baby had Downs) and we think the baby might have Downs”. Her tone, which was very nonchalant, almost discounting the test results completely, caught me off guard.  She continued on for quite awhile examining everything, but showing us the kidneys, that weren’t in any dangerous area based on their size and were clearly functioning perfectly – she even measured again from another angle and could see the baby had processed waste through the kidneys and actually peed it out, so the entire kidney function happened in front of our eyes and was working as it should. Despite that bit of good news, I couldn’t get her tone about the Verifi test out of my head so I finally had to bring it up with her because it was bugging me. So, I said “I gotta ask you…you seemed to discount the Verifi test like it wasn’t necessarily accurate.”  She replied with a long, and somewhat personally biased response about nothing being certain til the baby’s born and some personal anecdotes about people she knows with Downs kids and such. It was pleasant and in many ways I really liked her attitude and demeanor, but was still a bit irked at her tone regarding the test as if she knew something we didn’t or just didn’t think it was truly credible.  Also, during her exam, she kept pointing out all of the things about the baby – particularly the things that are inconsistent with typical Downs babies – and making us feel like the previous findings weren’t accurate.

Some things of note were -> Our baby is measuring in the 80th percentile, certain parts in the 90s…Downs babies are typically much smaller. The nuchal fold, a hump above the neck, which is enlarged with Downs babies, was not at all an issue and we later found out that it’s only a marker up until around 20 weeks, which when we were originally checked hard for that, it was nearly 22 weeks and even then didn’t officially get into the red flag area. She also specifically pointed out the bridge of the nose and how it was sloped “normally” with a “great” long length, when typical Downs babies are humped and short. There were a few other things like this. All of it made things feel very…well, WTF?

Because of her comments, our results of the day’s tests and some other things on my mind, I asked to speak to the Genetic Counselor again before we left, which the technician said would be no problem since she was in and likely available for us after we met with the doctor.

After about 90 mins with the technician, who was super sunny and cheery, the doctor came in to talk to us and look at some things more on ultrasound.  She was a little doomy and gloomy with seemingly no reason. She saw no real issues in the kidneys, agreed they seemed to be working perfectly, but then said we needed to keep an eye on them, but for no reason other than because the Verifi test indicated DS. She, too, made casual reference to Verifi as if it weren’t all that big a deal and wasn’t necessarily accurate. “We’ll know when the baby comes out”, she said.  Also, upon analysis of our ultrasound that day and her additional ultrasound, she made a couple comments that are really bugging me.

The first was that the nuchal fold, the marker that was the one that tipped us over the line in our earlier trip to see her, was not something she would have even considered a marker – though that day when we were there, it was the one she focused on the most and the one for which she said our chances of this baby having DS was now down from 1 in 800, to a dire 1 in 4.  That was a little annoying as if she didn’t even remember her own words and didn’t really even have a firm grasp on what she was telling us, but worse was the next thing that came out of her mouth. She actually told us that based on the results of this day’s ultrasounds and the way the baby is measuring, AND with the perfect echo (heart exam from the previous week), there is nothing indicating that this baby has anything at all wrong. WTF again?

So now, other than this test confirming DS that we were led to believe is soon to the gold standard and is never wrong, both people we’ve talked to that visit have made us feel like that test isn’t all that valid and every other sign is pointing to this kid not having DS. Oddly, the other medical professionals we’ve seen in the last month seem to either not know about the Verifi test at all or don’t consider it to be anything firm, but rather another screen since it’s not technically diagnostic.

After leaving the doctor and heading in to see the Genetic Counselor, we were both a little peeved and confused.  We asked a bunch of general questions to her, but drilled in a bit on the Verifi test. She, above all the others, was steadfast that this test is never wrong, is the best there is and their physicians and hospital were especially fond of it for numerous reasons.  Then, she sorta back-tracked by saying it’s just a screen and not a diagnosis.  WTF? It can’t be “never wrong” and “not a diagnosis”, at least as far as I’m concerned. Those are sorta mutually exclusive when it comes to telling the patient, if you ask me.

Needless to say, this is very frustrating and building this completely pointless false hope. We are fully gripping the fact that we are having a baby boy – special needs or not – and are gonna love him and parent him and make his life great.  I don’t care if he does or doesn’t have DS at this point, I am just completely flummoxed by the inconsistency of our care, the complete lack of support each of the care-givers seem to have for each other’s opinions and info, or at least the manner in which they are talking to us about what we were led to believe is a certainty. Maybe they just need to cover their butts in case they are wrong and we have some grounds to sue them…that’s what this society has come to after all. It’s probably impossible to do your job as a doctor how you really want to because some schmuck could sue you for saying or doing the wrong thing.

I am choosing to still believe that this boy has DS, which I think would be the only approach to take because we have the advantage of being able to prepare whereas some parents who have DS babies don’t get that. And, if he comes out without DS, we’ll think that’s just swell, too. I am just kinda pissed about the way we’ve been handled.

Chelle and I have been discussing how we’ll proceed. Now that we know that the heart and kidneys are doing just fine, we don’t really have any major worries. If there is anything, they’ll check thoroughly when the baby is born and act appropriately then – which, frankly, is what they would have done with any of the thousands of Downs babies who are born each year with DS without any prior heads up. The perinatologist said we should start coming back in a few weeks for weekly ultrasounds which we see no value in at all. It won’t change anything and they are just gonna keep yanking us around…and the cynical side of me thinks they’ll keep getting rich from unnecessary exams…that’s how it feels right now at least. We are leaning to just play the next few months out and leave things in God’s hands. We aren’t big fans of intervention anyway. Liddy was born at a hospital 75 miles away for that reason – we wanted to do all natural birthing methods with a midwife and no intervention and it takes getting that far away to really be able to do that around here.

I’d be lying if the thought of this baby not having DS hasn’t been consuming me the last few days. I’m upset that the folks at the hospital have put that very reasonable thought in my head, especially after giving us zero reason to think anything other than DS just a month ago. I guess the overriding emotion here is just frustration. We’re also generally skeptical of doctors’ ethics and motivation in the first place and the idea of an otherwise perfectly healthy and “normal” baby needing weekly ultrasounds at the high risk prenatal clinic “just to keep an eye on things” seems outrageous and frivolous to me.

I could go on and on. This is really bugging me and it’s hard to write it down in a way to even conveys the frustration. It might all sound like a simple miscommunication or something, but I think it’s really just one of those things that you can’t fully appreciate unless you’re walking in our shoes. I’m upset that it’s getting to me and ruining my excitement for baby Parker, most of all. Hopefully I’ll wake up tomorrow and feel better about it all, but as for today and the past couple, my negative feelings about this last visit are getting the best of me.

On a sunny side, it’s -40 degrees wind chill today…wait…that’s not positive either.

Yesterday was Michelle’s birthday! That’s positive. She’s the best mom and wife in the world and works harder than anyone I know to make our life great, so this annoying and frustrating situation was not welcome the last couple days, so I am mostly sorry that it came around her b-day and the holidays. We’ll get over it and move on in no time, but sometimes you just need to rant and vent and bark like a dog. RUFF RUFF!

-CH

I have a lot to say about our trip to the perinatologist yesterday, a trip that was a huge mix of emotions, many of which I am still processing and all of which relate to the gigantically different info we seem to be getting from one care-giver to the next and one visit to the next…that’s a story for another day.

As promised, we have a name picked out for the baby! It was deliberated a lot and since going into this whole thing, we were fully expecting girl, it’s all fresh and new, but we decided…well, Liddy decided.

Liddy’s new favorite book is called “Penny Loves Pink” about a girl who loves girly stuff and pink is her color. In the end, she has a new baby brother. His name is Parker! We happen to really like the name and Liddy has dubbed our little guy Parker and there looks to be no turning back.

I think it’s a really strong name and the one rule I had was to choose a name that didn’t sound like a little kid forever (Tommy, Joey, etc.) cuz I think people tend to treat Downs folks like kids forever and I didn’t want to further that with the wrong name.

Parker is gonna be amazing, he’s gonna have one amazing big sister and he’s gonna get all the love we have to give him. Can’t wait!

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Baby boy is getting great gifts…helpful, too, cuz we have a zillion girls clothes but nothing for boys, so this is a nicely timed holiday for him! I’m feeling really happy today, Christmas Day, knowing that out lovely little daughter is genuinely grateful for her gifts and we are doing something right with her. After opening her gifts this morning, she ran up to both of us and thanked us and hugged us and said “Merry Christmas”. She gets it.

Today is a busy day with Christmas celebrations and I am curious if anyone today will bring up Baby boy’s DS. So far in all of our interactions this holiday season with dozens of people, not a word. I get that it’s weird and taboo, but you can talk to us about it. To be fair, we haven’t really brought it up much, but I’ve slipped it in there a couple times just to let people know it’s ok to talk about it. I’m taking it easy for now cuz I know a lot of people are still figuring it all of and what it means to them, but I’m thinking that January is gonna be the month people will get sick of me talking about it :-) I just want the elephants in the room to disappear and everyone to be really comfortable with it.

Maybe as a result of being in the holiday spirit and seeing what this holiday means to kids, I’m extra excited about bringing baby boy into this world so he can share in the magic of the holidays. It’s gonna be next Christmas in no time, right!?

Lastly…gonna hold out on the baby name for another day. Today is about baby Jesus, not baby H.

Merry Christmas!

-CH

It’s been a crazy few days of holiday madness and Santa’s not even here yet. We’ve celebrated a couple times and also had a fun day ringing the bell for the Salvation Army. Probably from that specific event and the generally sub-zero type weather, Liddy has a bad cold and I’m starting to head that direction. It’s not hurting our holiday spirit by any means, just means we won’t be trying to stay up too late and meet Santa.

We have a full day tomorrow with Chelle’s folks followed by her extended family on her mom’s side in the afternoon which is sounding like a crowd upwards of 40, so that should be quite the scene…come one over, no one will notice :-)

On the baby front, we have a name picked out and some seriously cool plans for his bedroom. Maybe as a Christmas Day present, I’ll divulge all of that top secret info.

In the meantime, leave out the milk and cookies and hope you made the “Nice” list! We wish you a happy Christmas and really appreciate all the love and support over the last month or so.

Cheers!

-CH

As most of you know, I played college baseball at the University of Iowa (Go Hawks!). Recently, one of my teammates has been in the news for what could only be labeled as a tragic story.  However, it’s really been more of a powerful story of love and life, than sadness and loss. I heard about his wife’s struggle with cancer earlier in the year, but this news of their child being born through a surrogate was very uplifting and a great reminder about what lives can really be, but also the beauty of legacies that can live on through children.

Our situation, though different in so many ways, is similar in the simple fact that it’s about love through difficult times, unknowns and sadness. One thing that really resonated with me in this story was how Nate describes Laura’s attitude through her battle as being so positive that no one around her was able to be negative about it. That’s the exact way I have been trying to be about baby boy’s DS.

Love is powerful. Happiness is powerful. Positivity is powerful.  The opposites of all of those are equally as powerful, and could be the emotion that others join you in if you let them. I’m so impressed with everyone I’ve ever met who has had struggles like Nate has dealt with, but has been able to truly stay positive and loving throughout it all.

Nate’s going to have times where he has difficulties being a single dad, but there is so much power in having the right attitude and his love for that little girl will power him through even the toughest moments. I know that our love for baby boy will be that fuel that gets us through anything.

Take a few minutes and read the story and watch the video here. It’s a special story.

Nate and his daughter.

Nate and his daughter.

It’s certainly not without some level of fear that we’ve been telling people about baby boy and his DS. I can think of only a couple people where I was truly confident about telling them. It’s a difficult thing to say, even when we are as fully accepting of it as we are, because each person has their own predisposed ideas of what DS is and what it means about the baby and us, as parents. I’m starting to not really care what others may think, because I want to change their perceptions anyway and starting really educating anyone I can on what this all means and what DS really is. I’ve already corrected a few people’s misinformation and I know, through this blog, I’ve been helping some others learn more and more everyday about DS and the differences…or the samenesses.  It got me thinking about what it really means to me as a parent for a DS kid and how it’s gonna be different from Liddy, if at all.

I literally jotted down a list of things that I was thinking about as it relates to parenting this little fella, vs Liddy. It goes something like this.

  • Infancy – same….sleep. poop, eat (ok, DS babies tend to have a little tougher time with nursing, but we’ll figure it out).
  • Smiling/Laughing – I’m HILARIOUS, how could this kid hold back? Downs isn’t gonna stop raw emotions of happiness, so that’ll happen a lot.
  • Crawling/Walking – he’s gonna have more trouble with it, sure, but that just means he’ll be snuggly that much longer!
  • Talking – will be slightly more challenging, but I have a feeling when he gets the hang of it, this kid won’s shut up, either :-)
  • Learning – I’m thinking we’ll be shocked every single day at how much he’s learning…so – same.
  • Loving – we’ve got a lot to give, so does he. Shouldn’t be a problem.
  • Making Friends – shouldn’t be a whole lot different in the early years – playdates, etc. He’s a kid and other kids won’t see it any other way.
  • Making Enemies – that’s probably more of an issue I’ll have. I already know I’m gonna hate anyone who stands in this kid’s way of doing anything he wants.
  • Music – it is the best thing that Liddy and I share, we sing and play every day and it’s the happiest memories I have of her life so far. I need at least 2 more members for a legit family band, so this boy has no choice but to participate. I have a pretty feeling he’ll love it.
  • Family – You don’t get to pick ‘em, as they say. But, you DO get to choose how much you care for each other and that will be an easy one. Our family is going to be really special, really different and really fun. We’ll make sure we don’t try and be anything other than who we are and things will be fantastic, I just know it.

There’s more and this is a growing list, but I am really finding that my nerves and worries are the same as they would be for any other kid. Our lives aren’t really gonna change any more than they would have…internally, at least. Externally, there will be different looks from strangers and different experiences for us that we wouldn’t have otherwise had, but I’m prepared to live our life in the way we would have always intended – vacations, car-rides, snowmen in the winter, Wiffle ball in the summer, etc.

In other news, I won my way with an amazing furniture purchase for the baby’s room with an outstanding leather rocking chair and I have also won my way to do a few unique decorating things for his room. That is no small feat considering Michelle is an expert interior designer. I have, however, proven myself both handy and trend-setting when it comes to home decor, so I think I’ve earned this opportunity.  Pics to come!

-CH

 

 

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Well, after what seemed like a million trips to the clinic or the hospital and leaving with bad news, today was different. Today we had our echocardiogram, a thorough examination of the baby’s heart. The results were that the heart is perfect! No sign of defect, no holes, growing well, working properly!

It felt great to get some uplifting news and even better because that takes away the last true remaining worry about this pregnancy. Things going forward should be routine, or at least as routine as any other pregnancy. Had the opposite results come back, we would have had to prepare for immediate heart surgery when the baby was born.

Another nice thing to feel was being on the happy side of the odds. In this case, 2/3 of Downs babies have a heart defect requiring a procedure, so to be in the minority this time was actually to our favor. Can’t lie – it feels good.

Obviously things can happen in any pregnancy and we aren’t worry-free completely, but this is a good morale boost.

The best thing is that it frees us to create a birth plan that doesn’t limit us to a doctor at the hospital. If we want to do another all-natural birth with a midwife like we did with Liddy, we can do that without worry. That’s a nice bonus.

Thank you to everyone for your prayers and thoughts over the past few weeks, we appreciate everyone’s support.

-CH

Down Syndrome folks have a number of characteristics. Many people obviously associate the physical attributes with Downs because they are easy to see. Some of the others are less noticeable to the eye.

One of the common characteristics that is more hidden is issues related to the heart. In many cases, during gestation, baby’s heart grows slightly irregularly and has holes between the chambers that causes clean blood and contaminated blood to mix. This can be dangerous for obvious reasons. Something like 60% of kids born with DS undergo heart surgery. It’s something we are certainly preparing for.

During our Level II US, they saw some abnormalities in the sizes of the chambers, though didn’t see the cross-contaminated blood, but it was enough of a concern to schedule us with a cardiologist for a echocardiogram. That’s coming up on Monday.

Fingers crossed that everything will be fine. The fact that it’s so common does mean the surgeries and procedures are pretty standard and success rates are extremely high, so there isn’t a lot to be scared of, but it still scary when newborns have any procedures, especially open heart surgery!

There’s certainly a chance that there are no issues and we are in the clear, but since we’ve received unexpected news a few times now, we aren’t baking on anything :-)

In other news, Chelle and Liddy are headed to Minneapolis today with cousins, Grandma and Aunties to go to the Holiday display at Macy’s. Should be fun!

I, on this day, am celebrating the 4 year anniversary of giving up alcohol. In 2009 I made a commitment to health and cut out anything that I didn’t need, sugar and alcohol most notably. Alcohol has never really been something I struggled with, but I have “the gene” and it has played a very negative role in both of our lives, so that was an easy one for me to give up. That health kick, by the way, resulted in a 60 pound weight loss and a lot of good habits solidified. Proudest of all, though, was nixing booze all these years and still being the life of the party. I think a lot of people would be surprised how much fun you can have and how much fun you can be as a teetotaler.

Cheers on this Friday!

-CH

This week ESPN is celebrating Jim Valvano, the storied college basketball coach who led a very underdog North Carolina State team to the NCAA championship in 1983 and later became a popular broadcaster. Jimmy V died of cancer 20 years ago already, but in his last years, he dedicated himself to living his life to the fullest and creating a foundation to fund important cancer research. Shortly before his death, he received an honorary award at the ESPYs and gave a very memorable speech. His motto, and that of his Jimmy V Cancer Research Foundation, is “Don’t Give Up. Don’t Ever Give Up.”  That’s a great message, but I’ve always remembered one part of his speech that night:

“To me, there are three things we all should do every day. We should do this every day of our lives. Number one is laugh. You should laugh every day. Number two is think. You should spend some time in thought. And number three is, you should have your emotions moved to tears, could be happiness or joy. But think about it. If you laugh, you think, and you cry, that’s a full day. That’s a heck of a day. You do that seven days a week, you’re going to have something special.”

Now, those of you who know me, know that I am a bit of a BS’er and taking things seriously is quite hard for me. In cases where it’s emotional or difficult, I find that humor is particularly helpful in helping me avoid getting caught up in sad or heavy emotions. So, definitely because of the weight of our situation, I’ve found myself laughing a lot. The best part? Chelle has been leading a lot of our laughing. She’s definitely coming around and seeing the really awesome things ahead for us, and we are keeping things on the up with some chuckles.

Given all the new information we are absorbing everyday, the new discoveries we are making and all of the emotions processing, we spend a lot of time in thought. Almost too much, probably, and that makes things like shoveling snow, or moving furniture particularly wonderful because they require so little thought. But thinking is certainly a big part of our days.

Our emotions have certainly moved us to tears a lot lately, too. The first couple weeks, they were tears of sorrow and pain. Combined with the shock, it was sad days coming to grips with things. But, lately, I’m finding my emotions getting the best of me thinking about love. I can’t control how much love is building up inside me for this little guy. I just want so much for him and I know we can give him all of it if we just love him as much as we can. The other love is the love i’m feeling from others. The last several days we’ve been slowly telling our friends. Each one has been amazing and so loving. Every single one has pledged their support and offered to do anything they can. I know they all mean it, too, because we’ve been really lucky to surround ourselves with great people.  Many of them have mentioned that they were brought to tears with our news and I know why. It’s not because they are sad for us, though sadness is a real emotion that is part of this. It’s because they love and care for us and don’t want us to be in pain. That means the world to me. It’s not always easy to feel love, but we’ve been feeling it a lot lately.

If you haven’t seen the Jimmy V speech, or even if you have, it’s worth 12 minutes of your day. There is a funny little rambling sports story in the middle about motivation and leadership that I actually find funny, but the really good stuff is sandwiched around that where someone nearing their end is still finding a way to energize and lift the spirit of everyone around them.

So, make sure and laugh, think and cry today. I’m 2/3 of the way there and it’s only lunch time!

-CH

It’s 11:51pm on Saturday night. I’m rocking Lydia who woke up screaming a little bit ago. It’s been a rough couple of days with her being sick, tired, cranky and not quite herself.

These few days of struggle and lots of snuggling got me to thinking about what “normal” means. That’s a word that most people probably would say is the opposite of Down Syndrome.

Lydia is amazing. She’s gorgeous. We literally get stopped by strangers all the time telling us how beautiful she is and how she should be a model or something. She’s also brilliant. She talks like no one near her age does. She picks up on things in an almost scary way and is so far ahead of other kids her age in so many ways. None of these things, by the very definition of normal are, in fact, normal.

Why, then, if baby boy is going to have DS would we care if he were “normal” if Lydia is anything but. He’s going to be talking and learning and reaching some other milestones at a pace unlike most other kids. He’s not going to look like a lot of other kids. So, essentially he’s going to be exactly like his big sister.

We’ve been talking a lot about what it will be like with him being so different from Lydia. I actually think him having DS is better for the simple fact that we can have expectations and set goals to exceed them. If he was “normal” we would (stupidly) expect him to do everything exactly as Liddy did and on the same timeline. That certainly wouldn’t have happened and it probably would have been frustrating or difficult to deal with.

The beauty of humanity is that we are all really different in so many ways. Regardless, baby boy was going to be very different. Down Syndrome is certainly going to make him unique and amazing. One thing it won’t make him is “normal”. I’m not even sure what that word means when it comes to kids, I just thank God Liddy’s not normal and am thankful baby boy won’t be, either.

Now…I would prefer if Lydia was a better sleeper, but you can’t have everything :-) Typically, Downs kids tend to be mellower and that probably translates to being a decent sleeper. I guess we’ll see. I’m excited to have him here and find out.

In other news, we think we’ve arrived at a name…stay tuned!

-CH