Deep thoughts on a Wednesday

With the Down Syndrome community in the midst of a Twittertwister over recent comments by biologist Richard Dawkins, I guess it would be remiss of me to not make a comment on it. A few days ago this guy (apparently a well-known scientist?) tweeted, in response to somebody saying they didn’t know what they would do if they had a prenatal diagnosis, “Abort it and try again. It would be immoral to bring it into the world if you have the choice.” His later apology only made things worse. Two gems: First, “what I was saying simply follows logically from the ordinary pro-choice stance that most of us, I presume, espouse.” And then, “If your morality is based, as mine is, on a desire to increase the sum of happiness and reduce suffering, the decision to deliberately give birth to a Down’s baby, when you have the choice to abort it early in the pregnancy, might actually be immoral from the point of view of the child’s own welfare.”

I want to step aside from this for a second and talk about Leah. I’ve hoped over the past year that Leah has shaped people’s thoughts about Down Syndrome the way she has shaped ours. My hope has been that if one of our friends or community members got a prenatal diagnosis of Down Syndrome that they would remember Leah when deciding whether to proceed with the pregnancy or terminate. But then I had a horrible thought – what if all they think of is how hard it has been for us? So I want to take a moment and clarify that 1) we have not regretted keeping Leah for a single moment, and 2) most of Leah’s medical problems have been about a) her premature birth, and b) her long-gap esophageal atresia, which was the reason for the premature birth in the first place. Our experience is quite typical for a family whose child has long-gap EA, but is not typical for a family whose child has Down Syndrome. And as we have discussed before, the odds of Leah’s type of esophageal atresia occurring together with Down Syndrome are one in a million.

So please, if you ever find yourselves making a decision about what to do with a prenatal diagnosis of Down Syndrome and find yourself thinking about our experience with Leah… please think about those sassy little pigtails and the proud smile on her face when she reaches a new milestone. Think about her giggles and the look on her face when we go through the car wash (oh boy, just wait for that one). I’m not telling you what to decide, because every family needs to make the decision that is right for them – just please don’t let our story influence your decision negatively!!

Now back to the substance of what this gentleman said. If you don’t like political or philosophical discussion this is the point at which to stop reading this post. SO, here we go:

I strongly disagree with the notion that a pro-choice stance automatically results in a pro-termination stance upon receipt of a pre-natal T21 diagnosis. Pro-choice means PRO-CHOICE. It means you support a woman’s right to choose what happens to her own body. I think there are actually different ethical considerations when you’re dealing with an unwanted pregnancy vs. a wanted pregnancy. With an unwanted pregnancy the moral issue is whether it is acceptable to force a woman to go through pregnancy if she doesn’t want to. But once you’re dealing with a wanted pregnancy, the choice is no longer about the woman’s right to her body – because she has already made that choice. It becomes instead a decision about what the woman (and partner, if applicable) feels is best for her child. Parents have had to make heartbreaking choices about terminating pregnancies in which the fetuses were simply not viable or would have had little to no chance of survival. It’s a crushing loss and it’s unfair to put a political spin on what these parents have been through. Personally I think you’re treading a thinner line when you are dealing with diagnoses in which a child can lead a happy and fulfilling life. But then again, who defines “fulfilling,” and is there a requirement for how long that life has to be? I mean – does one terminate for Trisomy 13 or 18? For Tay Sachs? Most children with T13 and T18 don’t live past a year, though some live into adulthood, and Tay Sachs gives a few years at most, the end of which involve some major deterioration. That’s a lot of suffering. And then what about Down Syndrome? Cystic fibrosis? A missing limb? Cleft lip? How about if it’s a girl and you wanted a boy? Where do you draw the line, or is there a line at all? I’m not asking what people should be allowed to do – just what they might consider when making these decisions. Raising a child with a disability is a big commitment. It is. You can’t do it half-heartedly and you have to know that it will change your life’s course. But that is also true if I take out the words “with a disability.” I like to hope that expectant parents who don’t feel prepared to raise a child with, say, Down Syndrome or CF would be willing to let the child be raised by others who feel differently, but in the end, it’s their choice.

Now, here’s where we get to the really cloudy ethical area – what is the doctor’s role in all of this? There are two big issues that I see coming up over and over again: poor and outdated information, and pressure to terminate. They often go hand in hand.

First, parents are often given an extremely bleak picture of the life of a person with Down Syndrome, and I believe that providing decades-old information is actually robbing women of their freedom of choice. Imagine that you’re told your child will lead a miserable and painful life and die in infancy or early childhood, and if they survive childhood they will never be able to learn very much or work and will probably get dementia and die in their 20’s. Now imagine you’re told instead that your child will always need some degree of support and will be more prone to some serious health issues, and it will mean a lot of hard work and patience on your part, but with early interventions and a good support system the child can lead a happy life and have friends and be beloved by their communities, and possibly even have a job or get married when they’re older. Might these two offerings lead to different decisions on the parents’ part? Maybe, and maybe not – but how can we know until doctors provide more accurate and holistic information?

Back in the 80’s, there was a child born with Down Syndrome and esophageal atresia, just like Leah. The doctors could have given the child a g-tube for feeding and then repaired the EA/TEF (it sounds like this child had the more common Type C), but instead they told the parents that the child would have a miserable life and would only suffer, and that the humane thing would be to let the baby starve to death. The parents trusted the doctors and agreed to let their baby boy starve to death. This case went to the state’s Supreme Court because there were several families that were willing to take the child in and make sure he got medical treatment, but the parents refused to allow this because they truly believed they were doing what was best for their child by letting him die, and the court agreed that it was the parents’ decision. This child was JUST LIKE LEAH. And they let him starve to death by withholding medical treatment. I realize this is a different issue because the child had already been born, but still – parents going through the crisis of learning of an unexpected diagnosis are in a vulnerable state, and doctors need to give trustworthy and current information about what that diagnosis means. Then, and only then, can the expectant parents make an informed decision about how they want to proceed.

Second, I have heard from a LOT of women that their doctors pressured them to terminate their pregnancies even after they declined abortion. Dear doctors: The freedom of choice is about the FREEDOM to CHOOSE. And if a woman CHOOSES to proceed with a pregnancy after a prenatal diagnosis, NOD YOUR HEAD AND MOVE ON. She’s made her choice. Focus on keeping mother and baby healthy and safe and preparing for appropriate medical interventions after delivery.

We feel very lucky that we did not get pressure like that with our OB/GYN providers. We had already made our choice, but it would have been very stressful to have to argue with doctors when we were already going through a tough time (especially with the suspicion of EA). What did happen is that once we had confirmation that our baby had Down Syndrome, we met with the geneticist and were handed a copy of Babies with Down Syndrome. That is the proper reading material in this situation – not some 30 year old pamphlet with little to no information about early intervention. Then we were directed to the high-risk OB for further consult and a more detailed anatomy scan. And that high-risk OB did not mention or suggest termination even once. He treated us like any other couple concerned about the health of their child-to-be, made the proper arrangements for us to deliver at the hospital where the pediatric surgeons were located, and arranged for us to meet with the surgeons – a meeting which of course never happened because Ms. LeahBug decided she was ready for the world 8 weeks early. ūüôā

I know it’s not going to get any easier for us as Leah gets older and her developmental delays get more pronounced. And things haven’t exactly been easy thus far (though largely because of the medical issues). But Leah is the sweetest, most precious little girl, and I can’t imagine our lives without her. She chose us, and we chose her back.

Can’t seem to stay away

We had another little visit to the hospital last week when Ms. Bug’s GJ tube pulled out. Earlier in the week we had begun the process of transitioning her back to g-tube feeding; we got a second pump and were gradually reducing the j feed and adding to the g feed. On Thursday the GJ came out, and Mommy and Gran put in the regular g-tube and drove Leah up to the hospital (Mama was away all day), where she was admitted in peds. The initial plan was for the GI on call (who knows Leah well and has done some of her dilations) to reinsert the GJ tube Thursday night, but Leah’s primary GI decided this would be a good chance to see whether Leah could tolerate full g-tube feeds. We stayed at the hospital for observation and increased Leah’s g-tube feed 5cc every three hours until she was at full continuous feed. And now she is back to the g-tube! Hurrah!

I think I mentioned previously that Leah caught a little cold last weekend. The good news is that she doesn’t seem to have pneumonia yet. The bad news is that the cold is thickening her secretions and making her gagging and retching much worse. She also developed a bit of an infection in her g-tube stoma, probably around one of the sutures, and the docs put her on antibiotics. On Wednesday night, we had what we might call an epic poopsplosion that reset the scales for epic poopsplosions. Leah was in her jumperoo and Mandy glanced over and noticed that she was awwwwwfully happy. Why was the baby so happy? Well, the antibiotics had caused a giant poopsplosion that had leaked out of her diaper and onto the floor, and Ms. Bug was kicking her feet around in it and having So. Much. Fun. We did not have so much fun cleaning it up, but we were still laughing pretty hysterically through the whole ordeal. Ms. Leah went straight to the bath.

SO – when we got to the hospital on Thursday, we let them know of this incident and they decided they wanted a stool sample since they continued to be loose on Thursday. They sent us home Friday, but on Saturday they called us back to tell us that the sample tested positive for c-diff. Oh boy. We have had a pretty confusing couple of days. They said it wasn’t clear whether she had an actual infection or was just colonized, as many hospital frequent fliers are. I left it up to the GI on call to decide whether or not to treat, and he said she should go forward with the specific antibiotics that kill this bacteria. But her regular GI called me yesterday and told us to stop the antibiotics – he did not feel it was appropriate to treat it at this time because it didn’t sound like a full-blown infection. I guess this strain is particularly resistant to antibiotics, so when you go on antibiotics, the good bacteria get killed and this one can get stronger and take over, causing infection and lots and lots of icky poopsplosions. But the antibiotic can itself cause the same reaction, and that’s what the GI thinks is happening. So he wants to wait a couple of days and see if it clears up on its own before attacking her body with 14 days of strong 4x-a-day antibiotics.

In brighter news, we have started mixing Liquid Hope into Leah’s breast milk feeds. This was a compromise with the doctors because it is very difficult to do blended feeds with a j-tube, and this formula is made completely of whole organic foods. She seems to be tolerating it well! We actually won a case of it in a Facebook drawing by the manufacturer, which is super-awesome and helps us out a lot. The best news is that they are coming out with a pediatric formula, which means we would actually be able to feed it to her without diluting it. Right now there is too much protein so we can only give her a small amount each day. At some point soon we are going to transition her to a fully blended diet, but it will still be nice to have the Liquid Hope pediatric formula when we are out and about and the logistics don’t allow for a blended feed.

I’m working on the next round of photos (LOL – the month of July), but in the mean time, here’s an exciting video. ūüôā

An actual update

Since we last wrote…

Leah got out of the hospital on July 29. I’m pretty sure my favorite non-Buggy moment in the hospital was from when the GI was in the room talking with me about options going forward. Remember how I said the stuff Leah was spitting up was absolutely foul? The doctors didn’t seem to grasp just how vile it was and I kept trying to find the most descriptive words possible but it didn’t seem to be getting through. At some point the GI doc¬†was concerned that there might be¬†milk in the tube and offhandedly said to the nurse, “Is it milk? Smell it.” AND SHE SAID NO. HAHAHA. I don’t remember which one of us invited him to smell it himself but he did, and he maintained¬†an impressive poker face. Absolutely classic. I would have said no too! She knew what it smelled like. We all did. It was awful! Why put yourself through that deliberately? I was seriously still replaying the scene and giggling to myself for days. “Smell it.” “No!” I’m smiling as I type the story. I hope at least one of you finds the humor in this situation. I swear it wasn’t hospital delirium.

This was my other favorite moment:

SO – yes, Leah came home July 29. She continued to spew yuckies for maybe a week,¬†and then it seemed to be tapering down – but then it got bad again. At this point she doesn’t even always bring something up – just chokes and gags and retches. It’s so frustrating to watch, and I remember how it feels to throw up multiple times every day. It’s exhausting. Exhausting is not even a strong enough word. This kid goes through so much.

On the bright side, here are some exciting things LeahBug has done since she got out of the hospital, in chronological order:

-Sent postcards to Cool Aunti Staci at camp.

-Learned to bang objects together – yay!!!

-Is consistently bearing weight on her feet when we hold her hands! She gets the “LOOK WHAT I’M DOING! I’M SO PROUD OF ME!” face and laughs, just like she did when she learned to sit. It’s so precious you can’t help but laugh with her.

-Listened to her Cool Auntie Erin’s band’s EP in the car.

-Wished a happy birthday to a couple of¬†SuperBaby friends and a “welcome to the world” to a SuperBaby friend who finally busted out of the hospital for the first time¬†since his birth 10 months ago.

-FaceTimed with her six-year-old second cousin for the first time.

-Had a play date with her best friendcousin at the Farmer’s Market.

-Started getting a blended-food formula through her j-tube in addition to her breast milk.

-Went to the Griffith Observatory and slept through the planetarium movie.

-Danced to the new Jason Mraz and Raining Jane album.

-Attended her very first birthday party for kids.

-Served as a Flower Baby in the beautiful wedding of some dear friends to whom Leah led us just before she was born.

-Became a toddler.

-Caught a cold.

That pretty much catches us up to today, which was another long day up at the hospital complex for doctor visits. In addition to what appears to be a cold, Leah also seems to have a bit of an infection of some sort at her g-tube site. They are putting her on antibiotics, which of course turned out to be a variety that can’t be fed through the g-tube, which we didn’t know until we got home. Tomorrow will involve some phone calls… Leah is also getting a second feeding pump and we are going to make an attempt to transition her gradually from j¬†feeds to g¬†feeds. Wish us luck – getting Leah back on g-tube feeds will put us back on the right track moving forward.

Re: toddlerhood… up to this point Leah has generally only really cried when something was physically uncomfortable or painful. But I’m pretty sure that she realized the effectiveness of The Wail while in the hospital, and now we are getting that whenever she gets upset about anything. She is still a very cheerful baby, but in addition to The Wails she has also been whining for long stretches each day. It’s very frustrating because it’s clear she isn’t comfortable but we don’t know what to do for her – mostly it seems like she is a) hot because of the weather and we do what we can to mitigate that, or b) tired and yet adamantly refusing to nap (see video above for a highly-subdued version). The latter is where she has really entered into the realm of toddlerhood, and it contributes to the former because she works herself up into fevers from crying.

In brighter news, would you believe her viral picture reached 1.4 million “likes”? It seems to be tapering off now.

More pictures coming soon.

Probably the most overdue photoblast ever.

These are super late, but I owe you all pictures while I’m busy catching you up. Remember when I had time to blog every day? I guess I should be grateful – pretty sure that only ever happened in the hospital. These pictures bring us up through the end of June.

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Deep Thoughts by Leah Buggy.

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Buggy the Vampire Slayer

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“What is it?” asked¬†the dog.

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Mommy made a hat!

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Baby ate a hat!

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“Here, let me hold that knot for you.”

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Pony Face

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Just some light reading for the weekend.

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Celebrating Father’s Day with Grandpa and Great-Grandpa!

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Great Grandpa!

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“ET PHONE HOME, Grandpa Bill!”

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Lobo tempting fate again.

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Mmmm, carrots! (Clearly before her last surgery)

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Silly selfies with Mama

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Mama loves the BabyBug, Baby loves the MamaBug

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Dilation day! “I’m so hungry – if I could just eat this chin, please…”

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Leah’s buddy Wesley decided to wear his LeahBug shirt that day. He and Leah must be on the same page – he didn’t even know she had a dilation scheduled!

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Hospital gown for breakfast!

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“Mr. Ducky, I have to have another dilation today.”

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“Maybe you could be my breakfast?”

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“Oh dear.”

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“Well shucks. If I can’t sleep, I might as well nap.”

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A bird’s-eye view of said nap.

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Wakey wakey!

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I just love this face. Don’t care if the pic is blurry.

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Her very favorite sleeping position

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Taking the whole “navel gazing” concept literally

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Geeeeentle with the kitty!

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Presh.

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A first! Swimmy time!

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We like it!

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We did not particularly enjoy the part where Mommy dipped our hair underwater. That was not cool. It was COLD.

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But it’s okay. Water is fun, because…

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…water has duckies.

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BabyBug doesn’t get to play outside every day, but when she does, she makes sure to enjoy a nice nap in the grass.

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Baby pushups

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For our 7-year wedding anniversary we took BuggyBug to the beach. It wasn’t her first trip but it was the first time we actually sat down and watched the waves. She loved it!

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She was not, on the other hand, particularly impressed with her bib.

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WHEEEEEE! We are silly!

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Cool Baby is cool.

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Family selfie

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I know it’s blurry but I just love this sheer joy.

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I wish I could tell you what was so funny but I have the oddest feeling it was my face.

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Caption, please.

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Come on. Just come on.

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Working hard in PT

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More JOY

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“Still wondering where my¬†service pony is…”

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“… But it’s okay.¬†I¬†can wait.”