Welcome to my blog!

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

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!