Welcome to my blog!

A blog about our busy family with two amazing kids, one of whom happens to have Down syndrome!

Wednesday, December 28, 2011

32 Week OB appointment...lots of info!

Well I met with my doctor today...

My OB said I definitely won't see my due date! Baby is tiny so he wants to wait until after the next echo and growth scan to even think about a delivery. He said he thinks I'll be okay to make it to 34 weeks (2 weeks from now!!!) but everything depends on my Monday/Thursday monitoring appointments and growth scans.

If anything looks not great I'll get steroid shots to mature her lungs in case if early delivery. She's in the 9th9th percentile which is considered IUGR but not severe IUGR so its definitely safer for her to be an inside baby! He said a 37/38 week delivery will be fine so we're just hoping every NST, growth scan and echo looks perfect. He said anything otherwise will mean she'll be earlier. So we're most likely having a January baby.

Our goal at this point is to keep her an "inside baby" for as long as possible! I asked about when we would schedule the c section date and he said we're kind of playing it by ear at this point and he doesn't want to schedule anything until after my growth scan on January 12th.

We've known we'd be facing some time in the NICU but lets all hope and pray that we have a very short stay!

I start start seeing my OB twice a week starting next week. I'll go on Mondays and Thursdays. I can't believe I'm so close to meeting my daughter!!! I really hope she bakes for several more weeks, but I am so excited!!! She must be pretty excited to meet me too ;)

Tuesday, December 27, 2011

The Road to Acceptance

Notice I say "road to". I'm not there yet.

Everyone comments about how I'm holding up remarkably well, how brave I am, etc... I really appreciate the support! But somehow it seems that I've always known that Lauren has Down syndrome. Is that weird? We've known for 3 months. It's just a part of her now, the same way my son's cute little gap between his two front teeth is a part of him. We're just lucky enough to get to know this part of her before she arrives. I can't wait to see her beautiful face, to see who she looks like, to get to know her smell, her personality. All of the things ALL parents get excited for!

Here's the part I'm struggling with. Whenever anyone is pregnant, people inevitably ask, "Do you want a boy or a girl?" and no matter what the answer, somebody always throws in, "It doesn't matter, as long as it's healthy."

But what if it's not?

Lauren needs open heart surgery at four or five months old. As her mom, I can't help but feel like my baby will be born with a broken heart and I can't be the one to fix it.

It's terrifying. It's overwhelming. And frankly, sometimes it pisses me off. Most days I can accept it, I do accept it. Getting mad fixes nothing. Worry only steals the joys of today, it brings nothing constructive for tomorrow. But sometimes I am angry. I don't know if my anger is directed at God, the universe, everybody with "healthy" babies. I don't know sometimes.

Most days I'm okay. Honestly. I wouldn't change one thing about my little girl. I wouldn't magically remove her extra chromosome and make her not have Down syndrome. I wouldn't. Like I said, it's just a small part of her. But every small part of her makes up all of her, and she's mine. She's the baby I'm supposed to have. I can't wait to hold her in my arms, count her fingers and toes and tell her how long we've waited for her.

At this point, since she isn't here yet, it's easier for me to learn everything about her heart condition and the surgery she'll need to fix it. I'm a nurse, I can look at it from a clinical standpoint. But I'm scared. I'm scared because I know the minute the doctors hand me my brand new baby everything will change. I love her so much already. I can't even really explain it. I feel like Lauren and I have crossed so many hurdles together already. I can't wait to meet this little person that has changed so many lives already. The minute she's placed into my arms, she becomes my daughter.

So I consider myself well on the way to acceptance. But I'm not there yet. Maybe I will be there after her surgery. Maybe I'll make it there before, I hope so.
The point of this post is to tell you that it's okay. Maybe you're one of my friends or family members. Maybe you are an expectant mom or dad with a prenatal diagnosis. Maybe you're one of their friends or family members. Maybe you're a complete stranger to all of this. It's okay to be scared, it's okay to be angry and it's okay to admit that you haven't reached acceptance. We'll get there.

Friday, December 23, 2011

Growth scan today

Happy 31 weeks to Lauren and me!!

I had a growth scan with the high risk team today to check on Lauren's weight, anatomy and to see what percentile she is in for size.

My mom got to come with me which was amazing. She hasn't seen an ultrasound in 25 years and was shocked at all the details we could see!

I was honestly terrified about this appointment. I was afraid she'd be growth restriced, which can increases chances for a premature delivery and indicate issues with the umbilical cord and/or placenta. I was afraid duodenal atresia would pop up. I felt guilty for being so nervous and not really excited. But a fellow poster on the Down syndrome pregnancy message board I post on put it so well. She said it's because I don't have the "safety net" that most people have. You know, the feeling that nothing bad will happen to you and that it only happens to other people. My baby has to have open heart surgery. That's scary! I was so afraid of getting bad news again.

The ultrasound went well!!! Lauren's long bones (arm and leg bones) are still measuring a couple of weeks behind, which is pretty common for babies with Down syndrome. Her head is measuring right on track and her belly is a couple of weeks behind. Her umbilical cord and placenta look "beautiful". Her estimated weight so far is just over 3lbs!! That's more than I weighed when I was born, I was a teeny tiny 2lb 12oz preemie.

She's measuring in the 9th percentile, which is usually considered growth restriced. The doctors I see said that they really aren't too concerned and don't consider her growth restricted at this point because her femur (leg bone) measurements play a lot into percentile calculation. She she's just my tiny little peanut!

The doctor actually said, "We don't see anything of concern other than her heart at this point. She looks great!" That is such a wonderful thing to hear and is truly the only Christmas present I wanted this year.

I go back to see the high risk teams for a growth scan and fetal echo to check out Lauren's growth and heart on January 12th. I start twice weekly doctors appointments to monitor her extra closely next week. Hopefully all of these doctors visits make the next 8 weeks fly by!!

Merry Christmas!!!

Monday, December 19, 2011

60 Days or Less

I just realized that today marks 60 days or less until Lauren arrives!!!

I am SO SO excited!! I think I'm even more excited than the first time around since I know how amazing it is to be a mom.

I'm going to be a mom of TWO kids! Awesome! And terrifying. Ryan turned 2 yesterday and I can't believe it's possible that he's already reached that milestone, much less that he's going to be a big brother in just 2 months.

My sister and I were talking about how weird it will feel for me to say "My kids" rather than "My son". I am so excited. Greg is painting the nursery this week so we can start decorating and get everything together. My goal is to have the nursery and the rest of our house in order by December 31st so we can start the new year out with no projects on schedule!

I have a growth scan this Friday to check out Lauren's growth and estimated weight to see where she is percentile-wise for gestational age. I'm REALLY hoping and praying that she's right on track. If she's measuring too low on the charts she'll be considered growth restricted which can up our chances of a premature delivery. Please pray that everything looks great on Friday! My mom gets to come to the ultrasound this time. I think she'll be pretty surprised at how different ultrasounds are from when she had me 25 years ago! Hopefully we get a nice tech who will flip on the 3D imaging for a little bit! We'll get to see the new women's/children's hospital as well. It was supposed to open last month but they were a month behind schedule so I'm pumped to see it this time.

Also, next week starts my twice weekly visits and non-stress testing. Please pray that Lauren passes them all with flying colors.

I'll update again after my appointment on Friday. Thanks for reading!

Wait! I almost forgot to tell everyone some GREAT news! RYAN AND LAUREN ARE GETTING A BABY COUSIN!!!! Yep, my twin sister is expecting a baby in July! It's been a long time coming, praise God!

Saturday, December 3, 2011

When are you going to start working?

As most of you (if I know you in "real life") know, I recently became a registered nurse! Go me!

The plan was to try to get a job while pregnant and just take a normal maternity leave. Lauren having Down syndrome never changed that plan. The gamechanger was her heart. The doctors and social workers at the hospital said we should anticipate a 1-2 week hospital stay and that parents take off anywhere from 4-12 weeks from work after their baby has open heart surgery.

I didn't feel that it was realistic or professional to expect an employer to give a brand new employee 8 weeks off after a C section plus anywhere from 1 to 3 months off for her surgery. If Lauren has her surgery at 4 months old I would have only been at work for 2 months before needing this time off. I feel like the responsible thing as a possible employee would be to be up front about this information and the time I would need off. Lauren will be here in 11 weeks or less (yay!) so the chances of me even finding a job would be slim right now anyways.

So believe me, I plan on working. I worked my butt off for the last few years to earn my nursing degree, pass the state boards and become a registered nurse. I really enjoy the field of nursing, it's what I was meant to do. I am very exciting to start working! But it will have to wait until after Lauren has her surgery.

To be honest I am REALLY enjoying my time home! I started the nursing program I completed when Ryan was only 5 months old. I graduated when he was 20 months old. I love getting to spend so much time with him right now, especially since he won't have my undivided attention for very long! Being a stay at home mom certainly doesn't pay very well, but it is so much more FUN than I expected. I get the feeling that returning to the working world will be very bittersweet.

Thursday, December 1, 2011

She said what?!

First of all, I just want to clarify that this is not aimed at anybody in particular. A lot of friends and family have been asking about the "right" things to say.

What is the correct way to refer to a baby/child/adult with Down syndrome? How about by their name ;) It's seen as hurtful by a lot of parents to have their kids referred to as a "Downs baby". The "correct" way to say it would be "a baby with Down syndrome". The same language, referred to as people first language, actually applies to people with autism as well! Also, you probably don't want to say "She's downs". Because really, she's a person, not a syndrome. Abnormal, retarded, etc... are also not correct, for obvious reasons.

Some parents also get offended by comments like, "They're always so sweet!". Referring to all people with Down syndrome as "they" is kind of stereotypical. So is saying that "they" are always sweet! First of all, no kid is always sweet. Kids are kids. Second of all, it can take away something that a parent might assign as a personality trait and make it into something that is a trait of Down syndrome. Maybe their kid is really sweet because they're doing an awesome job parenting!

Maybe God will give you a miracle! Lauren is our miracle. She truly is. The vast majority of early miscarriages are caused by chromosomal abnormalities, which includes Down syndrome (trisomy 21 is the medical term). We are being given a miracle baby that beat the odds. Truly, I feel that way. A lot of parents with kids with special needs feel that way. Down syndrome is our miracle.

You can't really know for sure until she's here. Sure we can. An amniocentesis is over 99.9% accurate. False positives are because of human error, aka switching up of samples somehow. Lots of people claim to know someone or that they themselves have had false positives and their baby was "normal". Generally, they had screening tests, not diagnostic testing done. Screening tests such as the nuchal translucency test, quad screen, anatomy scan, etc.. can give odds and anything over baseline for age is considered a "positive screen". A CVS test or an amnio are the only way to get a positive diagnosis. Our odds based on age alone for having a baby with Down syndrome were 1:1250. Once we had the anatomy scan and lots of things were seen on the ultrasound our risk was 80% or more. That would be considered a postive screen. We chose to have the amnio and got a positive diagnosis.

So, you're done having kids now, right? Maybe. We'll re-evaluate when Lauren's a little older, which has been our plan before we even got pregnant. Our odds of having another baby with Down syndrome after Lauren are 1:100.That's 1%. Maybe those are odds we'll be willing to take. Maybe they won't be. I'm not sure yet! We want to be able to provide financially, emotionally and spiritually for any children we choose to have. The good thing is that we don't have to decide right now.

Maybe she won't need open heart surgery, you can't know that! The awesome thing about having a baby in this day and age is that there are so many medical advances out there at our disposal! The other wonderful thing is that we're conveniently located about 30 minutes away from The University of Michigan Hospital. We are being closely monitored and very special attention is being paid to Lauren's heart. Believe me, I'd give anything for my baby not to need open heart surgery. But we're accepting this diagnosis and instead of praying for her heart defect to go away, we're praying for wise and skilled doctors and nurses to take the best care of Lauren as possible.

My hope is that I haven't offended anyone by writing this. None of this applies to anyone in particular. Nobody can always know the "right" thing to say! I'm sure I've said a lot of this stuff to or about people because before we jumped head-first into the "world of Down syndrome" we had no idea about anything. So thanks for reading and feel free to ask any questions, either here or in person. I mean that! If I don't know the answer, chances are I should and I WILL find out for you!

Wednesday, November 23, 2011

It's Thanksgiving Eve

Tomorrow is Thanksgiving! I'm sitting here thinking about how much I have to be thankful to God for this year and it's over whelming.

I have a wonderful husband, the most awesome little boy ever, a great house, a sweet cat (I know, I know. I'm a crazy cat lady) and we're expecting a perfect little girl. I have everything I could ever want this year.

Our families and friends have shown us such wonderful support. We are very blessed that everyone in our family has taken Lauren's "designer genes" in stride, I know not every family is as accepting.

We are blessed.

"Giving thanks always and for everything to God the Father in the name of our Lord Jesus Christ" Ephesians 5:20

I hope you have a wonderful Thanksgiving and are able to spend it with the ones you love!

Monday, November 21, 2011

Making Progress

We're finally making progress on both kids' rooms! Ryan's new bedroom is totally empty and we (by we I obviously mean my wonderful husband) will probably paint this week! We chose a light blue/grey for Ryan's room. His furniture is dark cherry wood. Once he switches to a toddler bed (not for a while) we're going to put some Disney Cars stuff in his room and we're getting him a Cars road rug for his toy cars for his birthday next month. I'm so excited to see it done!

For Miss Lauren's room we chose a light grey paint. I think it will look awesome with the white nursery furniture! We're planning on simple pale pink bedding, provided I can find what I like within our budget. I'm finding I have expensive taste, haha.

It feels so great to be getting things done! And a huge thank you to my wonderful mother and father in law for coming over to help us so much over the past couple of weeks!

I'll try to take some pictures (why do they never turn out?!) once both rooms are finished!!

Friday, November 18, 2011

Day at U of M

I promised more about Lauren's heart condition, so here we go!

Lauren has what is called an AV canal defect or AVSD or atrioventricular septal defect. What it means is that she has a hole in her heart. Imagine the heart as a box. Draw a horizontal line and a verticle line, creating 4 small boxes. The small boxes represent the 4 chambers of the heart. Imagine a hole right at the center of the four boxes, where all the corners meet. This is where the hole is in Lauren's heart.

She will require open heart surgery between the ages of 4 and 6 months, earlier if her symptoms dictate. Symptoms of heart failure will start to appear at around 4 weeks old, most likely. "Heart failure" is kind of a misnomer in this situation. In reality, her heart will be working very hard to make sure that in spite of the hole in the center, blood is pumped into the body and the lungs. This results in the majority of her calories to be spent by her heart trying to pump blood to her body and lungs. Her symptoms will most likely be feeding issues. Since the majority of her energy will be spent on pumping blood, not a lot of energy will be left over for eating. So according to the surgeon, she'll probably be slow to grow until after her surgery.

We met with the surgeon who will be performing Lauren's heart repair. He was a great guy, explained and ton and answered a lot of questions. He also immediately asked if we had a name picked out and referred to her as Lauren, instead of "the heart" or "the baby" the whole time. I really appreciated that he right away was calling her by name, rather than seeing her as another surgery on the books.

He said he does this particular surgery a couple of times a month and actually has one scheduled for Monday (let's all pray for the doctor, the baby and his/her family)! It's a common heart defect in people with Down syndrome. One of my questions was if the fact that our Lauren has Down syndrome would affect her recovery in a negative way. The surgeon said he actually finds the opposite! He said in his experience kids with Down syndrome tend to have an easier recovery than typical kids with this type of surgery. We're looking at 10-14 days in the hospital for her surgery and recovery.

He reviewed our last echo of Lauren's heart and says that he doesn't anticipate needing to do it any earlier than 4 months old. That really is great news because the heart valves of newborn babies are like tissue paper. We want to be able to give them enough to time to become stronger before her surgery.

We feel very grateful to be located so close to one of the top pediatric cardiology programs in country. Lots of families end up traveling for surgery and we're very blessed that we don't need to leave our "comfort zone" (at least geographically) for our baby to have open heart surgery. I'm sure it's tough enough without being away from home.

The good news: I had another fetal echo today as well to look at Lauren's heart. Everything has stayed the same! Her valve leakage is definitely on the mild side and has been for the past 2 echos. Now I don't need to go back for another echo until January! I'll still have monthly growth scans, but really, who doesn't love another chance to take a peek at their baby?!

Thank you all again for your prayers and support. It means more to me than you'll probably ever know.

Sunday, November 13, 2011

Getting ready!

We've finally started getting ready to make room in our house to become a family of four! We're doing a bedroom switch-a-roo. Our son, Ryan, will get the spare bedroom (it's bigger and he's older, it's only fair!) and we'll put Lauren in Ryan's current bedroom.

Guess what the best part is? I get to redecorate 2 rooms out of the deal!

The spare bedroom is plain beige currently. We're painting it probably a light blue and will keep Ryan's dark furniture for his new room. I can't wait! The nursery is currently an awful shade of green (I admit, I have terrible taste in paint colors) with a really cute brown cow theme. We're redecorating completely. We bought white furniture (I love Craigslist) and will paint the walls a very light pink.

Today we finally started clearing out the spare bedroom to get started on Ryan's new room! We moved the computer into the living room. Luckily my in-laws came over and helped us decide how to rearrange the furniture and helped us a ton. I love how it looks. We got rid of a ton of junk and found proper places for some more junk. I'm a bit of a packrat and it's really hard to keep everything when we don't have a basement.

Next on the list: Finish clearing out the spare bedroom and closet. Repaint. Move everything from Ryan's old room into his new room. Then we'll paint and set up Lauren's room!

We still need to reorganize our pantry, linen closet and our bedroom closet. I need a fairy godmother. Luckily I have hardworking husband, which is next best thing.

Our goal is to have Ryan sleeping in his new bedroom by Thanksgiving weekend and to have Lauren's room ready by Christmas. Yikes!!

Wednesday, November 9, 2011

Great baby check-up

I had my 25 week appointment today. It was only the second time seeing my OB since getting our diagnosis by the high risk team (all anatomy scans and amnios are done by the high risk team at the main hospital).

Last time he was overwhelmingly negative about the fact that our baby has Down syndrome. He was honestly awful and I was dreading having to see him for the duration of my pregnancy and delivery. He was also an hour late, which immediately made me think he was Googling Down syndrome right before he came in!

Today he was WAY better! So nice. He said he'd been thinking of me and asking how I was holding up. I said, "Honestly, I'm fine. We're fine. We've known that she has Down syndrome for over a month now. It's our new normal. We're just worried about her heart." (More on the heart issue later, I promise.)

He wants to see me every 2 weeks from here on out, until he moves it up to weekly. Starting next month I go monthly for growth ultrasounds on top of the monthly fetal echos I have to monitor her heart. I also start next month getting non-stress tests (or NSTs) twice a week. As my doctor said, "We'll be seeing a lot of each other." The great news is that he will do the NSTs in his office, so I don't have to travel to U of M Hospital twice a week!

He did say that he feels the frequency of visits is "overkill" but it is standard in our situation and we'd ALL rather be safe than sorry.

Overall it was a really good appointment. Baby's heartbeat was in the 140's, which is perfect. I feel pretty good, for being over half-way through my pregnancy.

Life is good.

Tuesday, November 8, 2011

My kiddo is a trooper!

My son had to have minor surgery to have his tongue clipped. They had to put him out for it, so I was a nervous wreck. He bled a little more than they were expecting so he needed a few stitches. Luckily they will just dissolve. Here's a picture of us in recovery right after his surgery. He's giving me "thumbs up"! He was back to his normal self after naptime.

Sunday, November 6, 2011

The Beginning.

Well, I figure a good way to start out this blog is to explain a little bit about how we found out our daughter has Down syndrome.

We went to our anatomy scan ultrasound at 18 weeks on September 26th, 2011. We had already had a "pretty good guess" that our baby was a girl at around 15 weeks, and Greg and I were so excited to find out if it was true! I, of course, had already started shopping for baby girl clothes. I didn't have any "gut instinct" on the sex of our baby this time around. With our first I knew right away he was a boy and I was right. So we couldn't wait to find out what God was giving us the second time around.

We went into the ultrasound room and the tech asked right away if we wanted to know the sex of the baby. We did! She looked around and finally said, "It's a baby girl." At the time I thought she didn't seem too excited, but what did I know? Maybe she gets sick of telling people what they're having all day. After all, I'm sure it's more exciting for the patients. She then said that she had to go review the ultrasound with the perinatologist (a high risk OB doctor) and that he'd come talk to us "if anything is wrong". I've been through this deal before, I know they don't get the big guns unless they see something different from standard.

The doctor came in after what seemed like an eternity. He was really nice, which we greatly appreciate. He said they saw a few things that were of concern. They saw shortened long bones (arm and leg bones), thickened nuchal fold, bright spots on the heart and a heart defect. Right away, I was the one that said, "You think our baby has Down syndrome!" I remembered a ton of that information from nursing school.

"Yes". I cannot even tell you how much I appreciated the lack of sugarcoating. I am a straightforward person. I don't appreciate beating around the bush, especially when it comes to medical information. They right away had us speak with the genetic counselor on staff, Carrie. She was so great! She let us use her office to cry, hug and talk about whether or not we wanted to have an amniocentesis to confirm the diagnosis. One of the big questions we had was, what if the amnio is negative? We were told that if the amnio was negative we'd be dealing with something 'very similar to Down syndrome'.

We decided we wanted confirmation. We made it VERY clear that were NOT considering termination and didn't want it brought up. The whole team was very respectful! Then we went to the ultrasound room to start the procedure. They inserted a HUGE needle through my abdomen into my uterus to get a sample of amniotic fluid. This was guided by ultrasound so they could make sure baby was safe during the procedure. The odds they gave us that our baby had Down syndrome was about 80%. We opted to have the rapid results, known as the FISH test, so that we'd have results within 48 hours.

Carrie, the genetic counselor, called us 2 days later (from home, on her day off!) to give us the news that baby Lauren DOES have Down syndrome. We cried some more, but to be honest, we did a lot of soul searching in the 48 hours it took us to get results. I don't think either of us did more than cry, sleep and research Down syndrome online. We were in a better place to "accept" the diagnosis by the time we got the call. But to be honest, even the week or so after was hard and filled with lots of tears, at least for me.

We are now in a place where we are 100% okay with the fact that our daughter has Down syndrome. Down syndrome is also known as Trisomy 21. A "typical" person has 46 chromosomes. 23 pairs. One set from Mom, one set from Dad. A person with Down syndrome has 47 chromosomes. There are 3 copies of the 21st chromosome instead of the typical 2 copies. I like to think Lauren has 23 chromosomes from me, 23 chromosomes from Greg, and 1 straight from God. We truly do feel that Lauren is a gift from God. I'm not sure what we did to be so deserving of such a gift, but we are so thankful for her!

We know that raising a child with special needs will be challenging. But as parents, we already know that raising a child is challenging! She will have delays. She will probably walk, talk and speak later than her peers. That's okay with us. Our job as parents is to ensure that she reaches her full potential and has a happy life. Isn't that the same job of all parents?

Welcome to our corner of the world. I'll probably talk about Lauren, my pregnancy, my many doctors appointments. You'll hear about our amazing son Ryan, my husband Greg, our families. Hope you enjoy!