Update: Sheridan's Heart

First, I want to thank everyone who sent us comments, well wishes, and information about their experiences. My family appreciates the support.

Second, given the technical nature of some of the following info, the post is a bit lengthy and I tried to provide pics where I could...

So, I'll get to the bottom line first, then the explaining of the various items I discussed with the cardiologist (nothing is ever black and white, right?).

Bottom line: Sheridan's heart is NOT enlarged, and his heart has not changed since the last echo in February. Hurray!

We're not out of the woods with his heart, but I was so relieved to this latest news. I think I squeezed Sheridan a little too tight when I hugged him after hearing the news.

So here is what I learned:

1. The x-ray image was likely taken at the very moment Sheridan exhaled. Remember little ones are put into a contraption that defies all things decent just to keep them in place and as still as possible. One problem: you can't make babies hold their breaths on cue for any amount of predictable time. The outcome: they breath in and out when their brains tell them to and the x-ray tech is simply not privy to that information. Thus, the x-ray tech pushed the button and Sheridan exhaled and - wallah - enlarged heart on the x-ray.

2. The echo revealed the following about his various heart defects:

The PDA and PFO are still small (again, no real change since February). The cardiologist explained he has, on a few occasions, seen a PDA repair itself after a few months and even after about one year. Key words: on a few occasions. Meaning: it's rare, not likely, and realistically it will require surgical intervention. More on that in a minute.

The VSDs...

Again, not much has changed with the VSDs. It is definitely looking like 2 relatively small holes (the February echo was the first image where the doc saw two holes separated with a bit of "heart wall" between them). One is about 1.8mm, the other around 3mm, and they are separated by a part of the wall between the two ventricles that the doc said is likely thinner than a piece of paper.

To help illustrate the rest of the conversation/information, here's the picture the doc drew for me on the exam table's paperliner (you know the long strip of stuff that looks and feels like a toilette seat cover?). Very little of the paper was left unscathed by Sheridan (he loves to pull it, wrinkle it, play peek-a-boo with it). So, I was lucky to get away with this pic (which, of course, he desperately wanted to claw at):


The two areas above that I circled in blue are the VSDs in the wall separating Sheridan's right ventricle (RV) and left ventricle (LV). The arrow shows the direction the blood is flowing through the hole (blood is flowing from his LV to RV, which in a healthy heart wouldn't happen).

The spot I circled below in orange is the paper-thin wall the doc mentioned.


So, it's possible that at birth, Sheridan had two VSDs with this "paper" wall and they just didn't see it, or it's possible that his body is generating tissue to close the one big hole and now we have two holes.

Also, the "windsock tissue" I circled in green below might be tissue that Sheridan is generating to help close the bottom VSD (or the tissue might have been there at birth).


3. The cardiologist's advice: continue our wait-and-see approach. In other words, continue on our current course of careful monitoring (he now sees Sheridan roughly every 3 months), and do no intervention right now. His advice is based on two really important factors:

First, Sheridan is eating and growing well. He is not what docs call "failure to thrive." If his heart was causing him trouble, he wouldn't eat very well and he wouldn't be chubbin' up.

Second, the pressure gradient is what it should be. Sorry, folks, I tried to find a simple definition online to link to that term, but none exist without making you read a medical journal article. So, bottom line, when a hole exists between the two ventricles it causes a certain amount of pressure. If the pressure is too great, it causes big problems for the pulmonary system. Hopefully that explanation helped?

Also, the doc mentioned that if Sheridan had a leak in his aortic valve (circled in red below), he would schedule him for surgery ASAP. But Sheridan has no such leak, thank goodness.


3. The cardiologist said that if we wanted, Sheridan could have heart surgery now. He always says, "You're my boss." He indicated that if the holes were all fixed, some of the respiratory issues might very well go away, but then again, they might not. One thing would be certain, his heart would be fixed and we wouldn't have to deal with any adverse effects (way down the line when Sheridan is older) of keeping them open to wait and see if they'll fix themselves.

He offered to take Sheridan's case to the cardiac surgeons' meeting to see what they say. But, c'mon, let's be honest... they're surgeons. Of course they will say "let's operate." These are all fixable holes with open heart surgery.

The VSDs would require open heart surgery, and the other holes would be fixed at the same time. However, if the VSDs close on their own over time, the other holes can be repaired with a catheter (as minimally invasive as heart surgery will ever get).

4. As good as all this news sounds, the key concern I brought up with the doc is this: I know that, by definition, the presence of these congenital heart defects - and the longer they remain open - means that Sheridan will likely face heart issues when gets older.

So, it's a balancing act. How long do we wait to see if the holes close, knowing that the longer we wait the more likely the holes will have long-term health implications? What is the threshold at which we say, "okay, it's time to close 'em up."

The cardiologist agreed that it is a balancing act, but said that Sheridan's holes are so small right now (and, again, not causing him any problems), that we're safe waiting for now. Close monitoring will help us determine when the balance has shifted in the favor of surgery.

5. The cardiologist noted, given everything I laid out above, that all of his heart defects taken together cannot explain the respiratory issues. In other words, if we were to take the heart issues off the table, Sheridan would likely still have the same respiratory issues. Of course, he ran down a list of reasons why this might be (e.g., people with Ds have shorter airways because the center of their faces are pushed back a bit).

So, all in all, Gary and I talked it over. It was actually a very short conversation because we thought our course of action was clear... we plan to monitor everything carefully and wait and see if our little big man can work on his own do-it-yourself repairs.

Now if we could just get information about his lungs from the pulmonologist... it never ends. :)

Why Does He Need Therapy?

[A bit of a lengthy post - make sure you have a few extra spare minutes]

We recently changed venues for Sheridan's water therapy. We're now in a small outdoor pool at a local swim school. So, when Sheridan is in the water working with PT, two other children are in the same pool learning to swim with their personal instructors.

A young girl (okay, I'm really bad at judging kiddos' ages, but I'm gonna go out on a limb and say she is about 5 years old) was really focused on Sheridan and kept asking her swim teacher, "Why is he in therapy?" She was so interested in what Sheridan was doing, she wasn't focused on what she was supposed to be doing during her lesson (I, personally, think that is totally understandable - Sheridan is mighty cute in his baby speedos!).

Let's take a moment to acknowledge something: why exactly the swim instructors felt they had the right to disclose personal, confidential information about somebody (who isn't even their client!) is beyond me. But they clearly felt it was okay to announce to everyone in the pool that Sheridan is "in therapy." Truthfully, although I value privacy (so why do I blog?!), Gary and I are very open, forthcoming, and proud (weird, huh?) of Sheridan's diagnosis (that proud part is a whole other post for a later time). Here's my aside's point: although I think most parents would have been (rightfully) upset that strangers were disclosing confidential, personal information to other complete strangers, I wasn't mad at all. I would have preferred to have been given the chance to approve of this action (I think it's just simply respectful and courteous), but honestly I didn't even bat an eye - if any of the parents/children had asked, I would have gladly told them that Sheridan has DS (or is it Ds... I see it so many different ways). Alas, my aside is over...

Now Back to My Mission

While the young girl (let's call her YG - I know I'm really not creative with these pseudonyms) was in the water, I just let her instructor handle it. I didn't want to interrupt their lesson and you could tell he was pretty annoyed that YG wasn't paying attention to her lesson.

When she got out of the water almost 30 minutes later, she continued to ask her mother over and over, "Why does he need therapy?" and "Why does he keep doing that?" (I think she was referring to Sheridan's occasional tongue thrust - she probably wanted to know why he was sticking his tongue out so often, but as you'll see from the progression of this story I never had the opportunity to find out exactly what she wanted to know).

I politely waited to see how YG's mother would handle this. After all, YG was asking her mother. Not me. I respect that. But oddly, YG's mother just started hurrying her (e.g., "hurry and dry off" and "let's go, let's go, hurry"). She never once even acknowledged her daughter's questions. Hmmmm. Ok.

YG turned to me in the middle of all this hurrying and asked, "Why does he keep doing that?" (Again, I don't know what "that" is). She caught me off gaurd because I was intently watching Sheridan in the pool - um, did I mention how flippin' cute he is?


So, YG caught me off gaurd... I just didn't hear her question (at least, it didn't register until a moment later). I looked at her and said, "What did you ask me, Sweetheart?" She repeated her question while her mother looked even more hurried and was trying to talk over YG so they could leave. I asked YG for clarification, "Why does he keep doing what?" I genuinely wanted to know, and wanted to answer her question.

"Okay, time to go," said YG's mother quite loudly, effectively ending the conversation. She scooped up YG and off they went. Hmmm. Weird.

It was plainly obvious that YG's mom was nervous about this innocent interaction. What was puzzling to me was that she appeared to be more than nervous; she appeared to be very uncomfortable. I couldn't figure out why she was so uncomfortable with the subject of children with special needs. Why she really didn't want her daughter to talk to me about it. I really could not wrap my head around that. Then, a few days later, it dawned on me:

She probably wasn't uncomfortable, and probably wasn't trying to prevent her daughter from getting the information she clearly wanted... the mom was likely nervous that it was making ME uncomfortable. It was probably the natural reaction all parents have when their children say or ask something potentially embarrassing. I dunno. But I decided to give YG's mom the benefit of the doubt...

Fast Forward One Week

YG, bless her little heart, repeatedly asked her swim instructor and mother "Why is he in therapy?" throughout her entire swim lesson. I think her mom realized that she couldn't run away this time...

Again, I waited patiently. YG, after getting out of the pool, was asking her mother, not me (and YG's mother just kept saying, "because" - the answer ALL children rightfully hate). But this time I listened so I would be ready to asnwer any question she might ask me. And then it happened.

YG: Why does he need therapy?

Me: You know how you need help to learn how to swim?

YG: Yeah.

Me: Well, he needs help to learn how to do things, too. Just like it's hard for you to do the butterfly stroke right now, with practice, you'll be really good at it. He needs lots of practice, too. Some things are just a little bit harder for him, so he needs to work on them, and she [pointing to PT] helps him.
[Note: YG is currently struggling to learn the butterfly stroke, so I took advantage of the analogy]

YG: But why?

YG's Mother: Because he has Down Syndrome... [she looks at me and asks, "he has Down Syndrome, right?"]

Okay... I have to say I was a bit surprised the mom said that. First, most people, unless they have had experience with a person with Down Syndrome, don't recognize that Sheridan has DS. Second, it was really weird that all of a sudden she was down (no pun intended) with the conversation. But, I welcomed it.

I confirmed his diagnosis, and YG's mom said again, "He has Down Syndrome, so he needs therapy to help him" - a bit vague, but I'll take it!

There I was, ready to answer more questions. Ready to use this as an opportunity to educate both the young and middle-aged. Ready to use our amazing experience with Sheridan to help reduce the stigma around DS.

And Then the Stigma Reared Its Ugly Little (Big!) Head

YG's mother went on to say a number of things, just talking to her daughter about children with DS. Most of it was difficult for me to hear because she was talking so quietly at a relatively loud outdoor pool, but the few things I heard made me a bit uneasy (e.g., "can't do things on their own") - but remember, I couldn't hear her well so I'm not sure exactly what she told her daughter. At one point YG's mom looked at me and said,

"She's just not familiar with Down Syndrome. She was in special ed for a while and they didn't have any Downs kids. Well, maybe they did but they kept them all separate. You know, they need to be kept separate in school. And maybe they had their own recess and everything because it's hard for them to run with their walkers."

Okay. That's a stereotype you don't hear every day.

Again, I was caught off guard here. Clearly the mom had some experience with Down Syndrome - she must know somebody, or at least seen somebody, with DS who used a walker. How else would that be her "image" of DS?

I have to admit, I froze a bit. Was this a battle I wanted to fight? Especially because we're at the pool every week together? Or should I pick this battle precisely because we'll be at the pool together (more importantly, our children will be at the pool together)? I decided that her battle was NOT one I wanted to pursue. But that I absolutely wanted to make sure that YG had an accurate understanding of life with Down Syndrome, and Sheridan was the best person to teach her that, not me.

Before I could continue my conversation with YG, she was once again whisked off by her mother.

At our last water therapy session, YG didn't ask any more questions. I think I missed my window of opportunity.

But oddly enough her mother now thinks we're pals and she made sure to explain to me that YG was in special ed "until we realized she was gifted and that's why she was different" and then proceeded to tell me, "You just never know how things will work out for your son, he might not, you know..." [at this point she used her index finger to draw circles next to her ear, like you do for "crazy"]. "He might be able to do some normal things."

Wow.

Her misperceptions deeply saddened me. But it was a good wake up call, nonetheless. I know the stigma that exists. That Sheridan must fight that stigma as he grows up, every step of the way. Gary and I will certainly stand by his side, and most certainly we'll blaze a trail.

To some degree, her point is well taken - we can't yet know what Sheridan's capabilities will be in the future. But we do know that he is currently: beautiful, silly, funny, clever, outgoing (but does experience stranger danger on occasion!), sweet, tender, loving... and that Sheridan brings smiles, warmth, love, and PURE JOY to those who are enriched by having him in their lives.

Need proof? Here's a reminder...

Remember that one time...?

So, yeah, remember that one time I posted about our sitting & belly skills dilemma? Oh, right, that was only 48 hours ago.

Well, (clear my throat here) our Little Big Guy took it upon himself to make the decision for us.

Take One:

At the park on Friday, Penny suggested I sit Sheridan on the grass so she could take a few shots of him. I kindly reminded her that he doesn't really sit on his own. That he might be upright for a minute, maybe two if we were lucky, and that he bobs and weaves the whole time (he works SO hard to stay upright!). So, take the shot - which might be an action shot - quickly.

The boy sat up. On his own. For almost 10 minutes.

My mom was there to see the whole thing, too. I was nearly in tears.

I told Gary about the new excitement when he got home from work Friday evening... and we played with him all evening on his belly. Yup, we decided to compromise. When we want to do something or play with him in a sitting position, we'll try it (which, quite honestly, we haven't done with him since the park).

Take Two

Gary and I decided last minute to do a date night tonight. When we got home, the babysitter proudly proclaimed, "Sheridan sat up all by himself for a while. All by himself, right there on the floor!" She pointed to his play area in the living room... Gary and I smiled and were so excited for Sheridan. Babysitter than quickly whipped out our digital camera and said, "I took pictures because I wasn't sure you would believe me!" And here is the evidence:

It's so wonderful to know that everyone in Sheridan's life celebrates his triumphs. Every single one. Big or small. I love how much that boy is loved!

The moral of the story? Sheridan takes good care of us. He always has a way of reminding us that we need not worry. And that we should make sure we continue to focus on his belly skills, but feel free to play with him while sitting, too. What a good boy.

The First of Many Dilemmas

Sheridan has been working SO hard on many of his "belly skills" - he LOVES to spend time playing on his stomach. In fact, he will play literally all day on his tummy if you let him (which we often do!). He's rolling, working on the skills to crawl, etc. and he is making so much progress...

So what's the dilemma?

Sheridan's physical therapist (remember, we're calling her PT) mentioned a while back that we would be focusing much more on belly skills than on sitting skills. She explained that his sitting skills would develop naturally (and indeed they have). More importantly, once kiddos learn to sit independently, it often leads to them not wanting to spend as much time on their little tummies anymore. Makes sense... once they can sit and play and do everything else in a sitting position, they don't want to spend as much time on their tummies. Of course, that can pose a problem because it becomes harder to work on their belly skills needed for crawling, learning to transition between laying down and sitting, etc.

So, we have been working on Sheridan's belly skills diligently and doing only the few things PT showed us to help Sheridan's sitting. Well, PT was right, his sitting has progressed really well. He's SO close to sitting independently... I figure he's no more than 2 months away.

So, again, what's the dilemma?

Every week PT checks to see how Sheridan is doing with his sitting. This week, she told me that if we actually worked on his sitting, he would be sitting independently in 1-2 weeks. WEEKS!

Huh?! I had no idea he was that close! I thought she was about to finish her sentence with "1-2 months."

Did I ever mention that sometimes I can be a bit of a dense mommy?

So, our dilemma: Do we work on his sitting so he can sit independently even though there is a risk that it might delay his crawling?

PT said that some kiddos do just fine working on belly skills after they can sit. Others really struggle - it's just simply difficult to make the progress necessary and crawling and creeping are delayed. You just never know which way it's gonna go.

PT did acknowledge that she has NEVER had another child like Sheridan who preferred so strongly to be on his tummy. So, will that translate to a decreased risk for crawling delays?

Gary and I have been chatting about it. We really want Sheridan to become mobile, and we know that he will crawl, he will creep, he will sit... it's just a matter of when (and a big thank you to Monica for reminding me of that).

It might not seem like a big deal to most people, but parents with a child with special needs are often faced with decisions like this. Is there a wrong answer? No, but that does not make it any easier to make a decision. As I write this, I actually feel a little silly - like I'm making a bigger deal about this than I should. The boy will sit! And, the boy will crawl! But I guess I always feel like Gary and I have to make the "best" decision for Sheridan.

So, do we help Sheridan sit independently or do we accept a longer delay in favor of not risking his crawling? Decisions, decisions. I think I need to just stop being a perfectionist... both answers are right!

Sheridan's First Party

Sheridan was invited to his first birthday party... Little Miss Gabby turned one year old and invited Sheridan to help her celebrate the big day! Even better, all of his other friends were there, too...

Gabby was beautiful (as usual!) on her big day... just look at this pose she strikes as she tries to keep her wind-swept hair out of her eyes! And Sheridan loved her mailbox toy... thanks for sharing, Gabby! It was a big hit with all your friends!


And John Michael and his family were there to help celebrate, as well. Look at John Michael cruising along... and he loved playing with Gabby's boa and mailbox, too! He even showed Sheridan how to put mail IN the mailbox (and Gary watched the boys have fun!).





Joaquin's family also came to celebrate! Like Sheridan, he was a bit tired when he got there, but then quickly joined in the fun. He, too, loved the boa (I think the boys liked playing with it even more than Gabby!)... and gave me lots of beautiful smiles.




Unfortunately, we had to leave early - Sheridan didn't take his regular afternoon nap and was having a really tough teething day to boot. We're sad we didn't get to see Gabby open her very own T21 Afghan! But we can tell from the pictures that it is just perfect for her!

All in all, we had a great time... and I think we might have to get Sheridan one of those mailboxes... or perhaps a boa?

My Very First Mother's Day

I am so fortunate to have such a wonderful husband, and to be the mother to an amazing little boy. I often don't know what I'm doing, but I'm always doing it with love!

My first Mother's Day was mellow - Gary and Sheridan even let me take a morning nap! The thing I loved most about my day? The hugs and kisses. I can never get enough of those baby kisses!


Best wishes to all you moms out there...

New Strides

I've learned a lot about child development, especially gross-motor and fine-motor development, from Sheridan's physical therapist (let's call her PT - not imaginitive, I know, but I haven't asked yet if I can use PT's first name in my blog). Babies develop everything (e.g., gross-motor skills, fine-motor skills, cognition) in a very precise, specific sequence. You know that little head lift your baby does, looking up while on his/her tummy? Or when your baby rolls from tummy to back? Each of those takes many skills that develop in a particular, precise order so that these larger milestones are possible...

One of the greatest joys of having a baby with DS is that we cherish and celebrate every little new development with Sheridan. Like rolling over, which Sheridan has been doing for some time now (you would be amazed if you knew all the developmental and gross motor skills required for a baby to do a simple roll from back to tummy)... It's funny that Sheridan worked SO hard to gain the 20 pre-requisite skills to accomplish a roll from back to stomach, and then one day it just happens. Something clicks. And then you can't stop the boy from rolling.

Just recently we had a number of new developments. It seems like they are coming in fast and furious lately! In the matter of just a few weeks Sheridan is propping himself up on his hands regularly...


He's propping to sit all by himself (it only lasts 2-3 minutes, but before we know it he'll be sitting straight up all by himself - which he can do currently with minimal assistance!).


Also, he's always loved to stand, but now he's beginning to stand for brief periods while holding on to something (like the sofa) all by himself.


And another new first... his first time in a swing by himself! I had to stuff that swing full of everything in his diaper bag (the changing pad, sweatshirt, burp rag, etc.) to help give him the support he needed to sit upright. I guess I never realized the pure bliss that can come from something as simple as a little push in a swing and your mom saying, "Weeeeeeeee!"


Although not a traditional developmental milestone, I think the swing experience is my favorite development so far!

Spartan Pride

True story, folks... I couldn't make this stuff up if I tried.

Today on our morning walk (a.k.a. mommy's coffee run), I was taking pictures of Sheridan when a passerby stopped to check him out. Sheridan and I both looked up at the man, who happened to be wearing a University of North Carolina t-shirt. Sheridan looked right back at me, blew a raspberry, and then looked back at the man and giggled...


That's my little Spartan! Go Green!

Speaking of raspberries... they are Sheridan's new favorite vocalization. I am often woken up in the middle of the night to the sound of raspberries coming from his room. As you can see, however, he does them everywhere...

Kung Fu Chin Grip

Poor little guy is teething... pretty intense at times. One of his favorite remedies is what I call his Kung Fu Chin Grip...



I'm not confident my chin sacrifice even helps him - and once a tooth breaks through (soon please!) I think it will end our little back-and-forth battles (he attacks with the Kung Fu Chin Grip, I counter his move with the Tickle Monster - a pretty fun game, really). I just wish I could make it all better - or at least motivate the teeth to come in more quickly!

*finally* getting on with it

I've been waiting quite a while to truly start my blog. Now it's time. He inspires me... what more can I say?


My friend Catherine once told me, "Sheridan is THE most photographed baby ever." I honestly think she's right... there's no denying it when every time the camera comes out he now tries to take creative control.

D(s)-Day

Sheridan's birth (in August '08) was nothing short of miraculous... I was able to have a completely natural labor and delivery (and if I was writing a blog about birthing it would be a great story - but that's for another lifetime)... Suffice to say that Sheridan's birth was beautiful. The best words Gary ever uttered to me were right after Sheridan's birth: "I didn't know it was possible to love you any more than I did, until I saw you give birth to our son."

The morning after Sheridan was born, he was wheeled upstairs for his first physical examination. Because I wasn't able to walk much at all (I had lost over half my blood after delivery - again, that's for a whole different blog), Gary followed Sheridan upstairs and watched as the pediatrician on call completed her examination of him. Gary and Sheridan came back to my room a while later...

Later that same morning, the pediatrician came into the room and said, "I did my evaluation of Sheridan and confirmed that he does have Down syndrome."

Her lips kept moving, but we didn't hear anything.

My immediate response was, "Okay," but I admittedly had tears in my eyes.

The doctor left, Gary and I looked at each other in shock. We looked at Sheridan in love. We didn't really say much except, "I love you" to each other and "We love you" to Sheridan.

We tried to make sense of the information the pediatrician told us (the information we didn't really hear - all we heard was "wah wa wa wah")... looking at Sheridan's ears. What about his ears? Looking at his eyes. What about his eyes? We didn't see what it was that made the pediatrician diagnose Sheridan with Down syndrome.

We immediately pushed the button for the nurse, and asked that the pediatrician come back into our room. She did and listened to our question (which really just centered around "what exactly makes you think he has Down syndrome?"). We listened to her short list of "markers" Sheridan exhibited: low ears (his ears still look just fine to us), his eyes (to this day everyone says Sheridan has my eyes), the gap between Sheridan's big toe and second toe (Gary swears Sheridan got this trait from him). We just looked at her and said, "thank you."

We studied Sheridan over the next few days... he's cute, he has Gary's cheeks (and what big cheeks they were!), he had a TON of hair, he has my eyes, Gary's nose, my lips... what exactly about this beautiful, perfect little boy did doctors and nurses think was "wrong"?

A social worker eventually visited our room that afternoon. She handed us a small, photo-copied pamphlet about "special needs" and told me she didn't know much about Down syndrome, but that she would ask a colleague for me. Thanks for that. Real helpful.

Stuck in the hospital, we couldn't search for information on our own, so we had no idea what this all meant. All we knew was that we loved Sheridan, but we were a bit scared... what did this diagnosis mean for our brand new little guy?

Fast forward a few days after leaving the hospital... after doing too much research (it's in my nature, what can I say?) - I say too much because most sites with information about DS don't discuss LIFE, they only list physical characteristics, provide a definition of Trisomy21, and talk about all the limitations by which our new baby would be hindered - I realized that I was grief stricken not over my son's extra chromosome, but over potential complications that might (or might not!) happen 25 years down the road... who needs that? Not me, not Gary, and especially not Sheridan!

We made the best decision we could have made... we simply focused on being a brand new family, and enjoying our newborn for just being a baby (and, I must admit, I especially cherished having him so close to me in the wrap - I wore that boy morning, noon, and night! - I still use the wrap, and he still loves it!).

Sheridan is more us than he is the extra chromosome - but I'll tell ya... we're just beginning to understand how amazing that extra chromosome can be!

My Pregnancy with Sheridan

FINDING OUT

I found out I was pregnant on December 23, 2007... the best Christmas gift EVER.

I decided to wait until Christmas day to tell Gary. As soon as I took the third pregnancy test (What can I say? I had to at least check the reliability of the tests, right?), I called a friend and asked if I could go over to his house to make a gift for Gary. My plan: make two stockings (we've never hung stockings on Christmas Eve before) - one would say "Daddy" and the other would say "Mommy" - hang them on the mantel on Christmas Eve after Gary goes to bed, and Gary would see them first thing Christmas morning. Surprise!

I went to my friend's house, used Elmer's glue and silver glitter to write "Mommy" and "Daddy" on the white fur cuff (they were NOT cute - my friend's five-year-old could have done much better), and then hid the two stockings in my closet. Each time Gary left the house I would get so eager to tell him that I would hang the stockings over the fireplace and wait for him to get home. The moment he would drive up the driveway I would take the stockings down quickly and run to hide them. I just knew it would be worth it to wait until Christmas morning.

I hung the stockings on Christmas Eve after Gary had gone to sleep (for those of you who know Gary, you know just how late I had to stay up to accomplish this). I left two lights on in the living room to shine on the stockings. I was so excited for Gary to wake up in the morning.

On Christmas morning we rose early (before Sheridan was born we always had to be at least 4-5 different places on Christmas day which meant we were up at the crack of dawn). We walked out to the living room to exchange our gifts. Gary walked right past the fireplace and stockings. Spotlight and all. Hmmmm... maybe he's just tired.

We opened the few gifts we had to exchange, and I asked him if he had missed anything. He looked at me quizzically. I finally had to point toward the fireplace. "Oh!" he said. He rushed right over and immediately shoved his hand elbow-deep into the stocking. Quite honestly, I should have seen that coming.

I looked at him, stopped him, and asked, "Did you even look at the stockings?" "Yeah," he said, "they're nice."

"Did you read them?" I asked. "Ohhhhh," he said as he pulled his hand out of the empty stocking. He looked closely at the stockings. Back and forth between the two.

Then he looked at me with a puzzled look on his face, "Why do they say that?" I smiled and waited for him to get it. He got it. I nodded and told him, "I'm pregnant," as he gave me the tightest hug he has ever given me.

Later that morning we announced it to my dad over breakfast, to Gary's mom and brothers while opening gifts, and at my grandfather's house after the Christmas dinner grace (Gary asked my grandpa if he could make an announcement after grace... as soon as grandpa finished grace he told everybody to wait - very important given that everyone rushes for the food line in the Mangino house - everyone looked around in anticipation because everybody knows it's a BIG DEAL if somebody makes an announcement after grace; Gary simply raised his hand and said, "I just want you all to know that Lisa is pregnant!" - cheering and hugs soon followed).

I'm glad I waited until Christmas morning to tell Gary. And I'm thrilled Gary was able to make the big announcement after grace at my grandfather's house - he had always looked forward to doing that one day. Dream accomplished!

THE FIRST TRIMESTER

So I'll get right to the most common things pregnant women get asked: yes, I was nauseous; no, I never did throw up; yes, I was very tired; no, I wasn't having weird cravings (it's hard to crave any food item when you can barely tolerate the smell of water).

I lost about 20 pounds in my first trimester (no worries, I had enough to lose and then some). The constant low-grade nausea was awful, but I'm thankful I never had to actually throw up (which is literally my least favorite thing in the world to do).

I lived off of Trader Joe's low-fat greek-style yogurt (VERY high in protein) and fresh fruit. Poor Gary... I had an intense aversion to many foods, especially animal proteins - and chicken in particular (which was weird because it was a main staple in my diet). If I smelled chicken it would make me feel so sick. You couldn't even say the word chicken without me turning green. Gary had to fend for himself every day throughout my pregnancy - I simply couldn't cook. Being around food, prepping food, smelling food, cooking it... it all made me sick. So, when Gary decided that he couldn't live off of plain yogurt, fruit, and peanuts, he started doing all the shopping, cooking (for himself only), etc. Poor guy. I know he was secretly panicked that he would be on his own forever (he will admit that he prefers my cooking to his own).

Doctor visits were pretty uneventful in the beginning... although Gary and I originally wanted to have the baby with a midwifery practice, they determined I wasn't low risk enough and it was best that I stick with OBs. And I think that all happened for many reasons (we'll get to those)...

My OBs asked that I take the glucose test (to test for gestational diabetes) and I refused. I knew I was predisposed to diabetes and I wasn't eating sugar, so why tempt fate with a glucose test? I did, however, suggest that I test my blood sugar 4-5 times a day and work with the "Sweet Success" program for gestational diabetes (whoever comes up with these clever program names should be ashamed of themselves). Well, not long after doing this my blood sugar started to go crazy on me. I never had super high blood sugar, but it did get higher than it should and it was very difficult to control with food alone (I was on a very strict "diet" to try to avoid diabetes during pregnancy). I continued to eat the same way, and chose to go on insulin. It helped to keep my blood sugar steady and under control (fast forward 9 months and I did NOT deliver a "big baby" and didn't have any complications common for diabetic mommies).

I won't spend too much time talking about the Sweet Success program here (I could have written a whole blog devoted to that experience), but suffice to say that I dreaded my appointments, hated most of the providers I saw there, and was simply tired of being demeaned (especially by nurses and dietitians who told me they didn't know how to read and understand the latest scientific research around gestational diabetes or nutrition, and weren't sure how to help me because they'd never worked with a woman who hate so healthy before - WHAT?!). That being said, I'm sure some women appreciate that program greatly. Enough said.

I was eventually sent for an ultrasound to do some of the early diagnostic stuff OBs like to do. Cool. Gary and I sat in a dark room while some lady pushed on my belly with a goopy wand. I knew something was up when she continued to go back and re-image the same thing over and over again. Every time she moved on to something else ("Oh, look at the hands!" or "Oh! Look at the feet!" or "Oh! Look at the heart beating"), she always moved back to re-image and re-measure something in the baby's head. I knew she thought something was wrong.

After the appointment the technician disappeared saying that she wanted to have someone look over the ultrasound before we left. We waited and waited and waited. During that time Gary announced he knew we were having a boy - he saw boy parts in the ultrasound. The technician said she couldn't tell the sex, so how is an amateur going to see anything in that fuzzy black-and-white image? It could have been the umbilical cord (of course, Gary was vindicated at the next ultrasound when the tech and Gary - at the same time! - saw Sheridan's little boy parts).

So, back to the waiting... eventually, the tech came back and said, "You will be receiving a call from your OB about the results of today's ultrasound. She will likely call you this afternoon." Never a good sign. Doctors never call right away like that if it is good news, and technicians certainly don't disappear into back rooms for good news...

Well, I didn't wait for my OB to call. I called her. Bottom line: they were concerned about the size of the left and right ventricles in the baby's brain (where the spinal fluid pools and then recirculates through the spinal column). They thought they looked a bit enlarged and my OB asked that I see a perinatologist for a follow-up ultrasound. And thus begins lots of testing, and refusal of tests...

After the specialist did the follow-up ultrasound, she explained that the baby looked like he had ventriculomegaly (enlarged ventricles) but she wasn't sure why. She even specifically looked for "markers" of Down syndrome - her thinking was that sometimes babies with Down syndrome have ventriculomegaly (but the enlarged ventricles could be due to many, many factors, not just Down syndrome). The ultrasound showed nothing unusual, so we knew we would just continue to monitor everything throughout the pregnancy.

The perinatologist and my OB requested that I do a series of tests (particularly blood tests and an amniocentesis) to help them identify what was going on with the baby. Gary and I both explained to them that we would not be doing any invasive tests, and we had planned to not do the typical blood tests (e.g., AFP screening) to determine if the baby had any "problems." We told the doctors that an amnio was out of the question - it carries a risk of miscarriage that is greater than the risk of something being wrong with the baby. More importantly, we told them...

The results of any tests will not change our minds about the pregnancy. Test results won't impact our decisions. Gary and I even mentioned to a few friends that if we have a baby with special needs, then we have a baby with special needs. I can't remember how many times we said that to doctors and the few friends we told about the potential ventriculomegaly complication.

We did agree to one blood test because the docs kept hounding us - the possibility of a genetic disorder bothered the doctors more than it bothered Gary and I. So, they took my blood, results were negative, Gary and I were happy to be done with this, and the docs still insisted on an amnio ("you still have options" they told us - the only option for us was to have our sweet little Baby Holiday - that's what we called Sheridan when he was in utero). But the docs asked us if we wanted to have an amnio at every appointment (until the end of my second trimester).

Nope. Not gonna happen. If we have a baby with special needs, then we have a baby with special needs. It became our mantra. We had no idea that being this accepting early in the pregnancy would make a world of difference after the baby's birth...

Don't get me wrong, initially Gary and I were concerned about what this meant for our baby. For a brief moment I let myself be sad at the prospect of something going "wrong" (one possible outcome of ventriculomegaly is mental retardation) - and my poor friend Cindy who called me right at that moment got an earful of tears... but Gary and I truly accepted our baby for who he was going to be.

THE SECOND TRIMESTER

So, I was finally able to branch out and eat more than yogurt and fruit, and slowly started to gain steady weight. I still battled with the Sweet Success program. I still refused further testing. And by the end of the second trimester I finally stopped commuting to Monterey (oh yeah, did I mention that I'm a Visiting Professor at the Naval Postgraduate School and I was commuting 4 hours - one way! - to teach a class in the Graduate School of Business and Public Policy? - it wasn't too bad given that I could stay in the Bachelor Officers' Quarters during the week to avoid driving every day).

The second trimester was just more of the same, but I was less nauseous.

More ultrasounds were done to monitor the baby's ventricles. Nothing much changed at all. The ventricles still looked slightly enlarged, everything else looked normal. No need to get excited beyond the usual "we're having a baby!" excitement.

One day it dawned on me that we needed to take a birthing class. I remember thinking, "I guess we should figure out how to have this baby" - especially given that I really wanted to have a natural birth and Gary was very supportive of this. But I know I didn't know what I was supposed to do, so how was Gary supposed to know how to help me?

We happened upon a fantastic birthing class (The Bradley Method) taught by a great, down-to-earth, not-too-granola, straight-talking, postpartum doula. Michelle kicks ass, and it's too bad that she's not teaching any classes right now. She is very good at it - but I'm happy she is following her dream to go to school to be a nurse (and ultimately she wants to be a lactation consultant - and that field needs her).

Anyway, the class was great, although deep down I always questioned whether or not I would be able to go through with a natural birth. Some of the things moms-to-be are taught to help deal with labor are things like visualization (imagine yourself floating down the river and you see a red canoe with one oar in the water, you hear the calm waves lapping at the shore, gently shaping the smooth river rocks you can see beneath your feet through the crystal-clear water...). Yeah, visualization was NOT for me. Whenever Gary would practice it with me I would get so annoyed (why does the canoe have only one oar in the water? why do I care about waves lapping anything? and where the hell is this river taking me anyway?).

But visualization is the not crux of the Bradley Method... the goal is husband-coached child birth. Gary was to be my coach and help me through the labor as a true partner. Unlike how Kimo helped his wife by taking a six-hour nap in the hospital while she labored away. Catherine, you are a saint for putting up with him.

So, Gary and I attended child birth classes. I continued to watch what I was eating (although by now I was on insulin because it was the best way to keep my blood sugar under control and steady, no matter how well I ate). And we continued to look forward to the birth of our son.

THE THIRD TRIMESTER

Throughout my pregnancy I had some back troubles (threw it out pretty bad a couple of times) that only seemed to get worse as the pregnancy progressed. I ended up on bed rest quite a bit during the last trimester... but I continued to work (did I mention I had eight jobs throughout most of my pregnancy?) and we continued to attend our child birth classes.

I have to mention here briefly that my mom threw us the most kick-ass baby shower ever... it was co-ed (and although most of the guys initially dreaded the idea of going to a shower, they all had a great time), it was not your typical baby shower, had a great brunch buffet, had super fun nontraditional games (thanks, Aunt Dianne!), and a diaper challenge throw-down between me and Gary (Gary challenged me to a diaper-changing contest - he researched how to change a diaper on the internet, he'd never changed a diaper before in his life). Needless to say, I won the challenge (but not by unanimous decision - my mother-in-law voted for Gary despite the fact that his baby's diaper was falling off - but I wasn't bitter!). It was SO much fun and we are very grateful to my mom for putting together such a fun and memorable event to help us celebrate Baby Holiday's pending arrival.

At around my 36th week, I remember standing in my grandfather's kitchen, vacuum sealing pasta we made just a few days prior. My stomach started to hurt really bad and I felt like I was coming down with some kind of GI illness. I couldn't stand up, had to sit down. My grandpa finally looked at me and said "I think you need to go home and rest. Get off your feet." Smart man that grandpa.

On my way home, the pain got more intense and I really had a hard time driving. I finally got home and called my OB's office to talk to the advice nurse - I was really worried that I had food poisoning or some severe illness coming on that might hurt the baby. The advice nurse was gone for the day so I was told to come into the maternity wing of the hospital to be evaluated by the doc on call (so I could avoid the ER).

Man, I could barely get myself to the hospital (and it's only a few blocks from our house), and was grateful that the hospital room they put me in to triage me had a private bathroom. I called Gary at work to let him know I was going to be checked out, told him not to leave work, nothing to be worried about, I'll call you later when I know more... He was standing in my triage room in under 10 minutes. So much for him not worrying.

They hooked me up to a machine, strapped something on my belly, and the nurse laughed as I told her about the GI pains I was having. "Those are called contractions," she told me. She showed me what they looked like on the little computer print out. Hmmm... so that's what a contraction feels like. And they kept coming. And they kept hurting. And then I realized, "oh yeah, I'm supposed to relax during the contractions." Sounds counter-intuitive and nearly impossible to do... but trust me, it works.

So, I was a couple centimeters dilated, I was having contractions. "It could be any day now, or two weeks from now," the nurse said as she sent me on my way.

I had contractions on and off for weeks. Sometimes keeping me up all night. I walked like crazy all day long (walking is supposed to help move things along). All I had to show for it was loss of sleep and contractions day in and day out.

Meanwhile my OBs and the perinatologist had been after me to agree to be induced at 38 weeks (they'd been trying to get me to agree since the beginning of the third trimester). Why?! All they could tell me was that it's better for a diabetic woman to be induced at 38 weeks. They were willing to give me an extra week because my blood sugar had been so well controlled. Also, the ventriculomegaly resolved itself and all ultrasounds were now "perfectly normal" to use their words. So, again, tell me why you want to force my baby from his current home before he's good and ready to come out on his own?!

Gary and I struggled with this idea of being induced. We didn't like it. Not one bit. For many, many reasons... I never agreed to it. Every time the docs brought up the induction, I would tell them that my husband and I were thinking about it. Truth is, we didn't want to do it unless they had some data to show that waiting truly put the baby at risk. They could not provide us with any data - "well, it's just an international guideline - everyone does it but we don't have any data per se that this is what's best, especially for a woman like you whose blood sugar is so well controlled." Hmmmm... they didn't exactly make a great a case for evicting my baby early. Gary and I decided we would just wait things out, get closer to 38 or 39 weeks, and make a decision if we needed to based on what was going on with Baby Holiday. Oh yeah, forgot to mention, we (meaning me and the baby) were being monitored multiple times each week at this point (baby's heart rate at rest, during activity, back at rest, and ultrasounds - I absolutely HATED this process and skipped some appointments so I wouldn't have to be harassed, but kept most of them so I would appear to be "compliant" and could avoid worse harassment).

Funny thing is, Sheridan was born exactly at 38 weeks. Precisely on the day the docs wanted to induce me, but they never got the chance! Sheridan knows how to take care of himself and his mommy...