Welcome to my blog!

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

Sunday, April 29, 2012

Puppies and Rainbows

Want to know what's cuter than a 2 year old singing Old McDonald Had a Farm?

NOTHING!!! Ryan serenaded us on the way to church this morning and it was hilarious!

Now for the puppies and rainbows post...

Some people might find my blog to be too "puppies and rainbows". You know, all things cute, snuggly and sometimes unrealistic. I know I write about positive things about 99% of the time. I truly am a super positive person, I prefer to live my life this way. Worrying about tomorrow only steals the joy from today. I'm not a particularly anxious person. I don't worry about the future all that much. Because I can't control it. It's not up to me. Sure, I can do things that will impact the future and make (most of the time) responsible decisions so my family's future is as bright as possible. That's why we have way more doctors appointments for Lauren. And why she'll get therapies from Early Intervention to help her learn.

But I'm not unrealistic. Believe me, I know Lauren will face challenges that Ryan will never face. She most likely won't meet developmental milestones at the same time as her typical peers. But the reason I don't usually post about it? I don't care.

I'm sure I'll feel some disappointment or sadness when Lauren takes a bit longer to walk, talk or whatever. I know I will feel rage the first time (and probably every time) she is picked on. Hopefully as a society we are raising our children to value the lives of people who are different from us. But I can't worry about that. I can make sure that WE raise OUR children to respect everybody. But I cannot control the actions of others. And we choose to surround ourselves with people who love our daughter almost as much as we do. And we choose to rejoice in her accomplishments, whenever they may happen.

So while my blog is "puppies and rainbows" for the most part...so am I. I love puppies, they're pretty darn cute. And while rainy days suck, who doesn't love rainbows?

Friday, April 27, 2012

One month post-op

This is probably my favorite blog post I've ever written. Wanna know why? I'll tell you.

Lauren's one month surgery anniversary is Sunday. And guess what we did today? We went to Walmart, went for a walk, hung out with my sister, went to Downtown Plymouth as a family, got ice cream, walked around, Ryan played in the fountain, Lauren slept in her stroller and Greg and I watched a movie. You know what that means?

Life is...normal. I never ever thought this would be our life. I was envisioning a life that was SO different from what I consider normal. When we found out Lauren would be born with Down syndrome and a heart defect I thought she'd be always sick. I thought our lives would revolve around Down syndrome. I thought I would feel so different as a person. In some ways I do. I feel more mature. Sometimes I feel like I'm 100 years older than people born the same year as I was. You don't get through open heart surgery on your 6 week old baby without feeling that way just a little bit. But I'm the same me. And to be totally honest, I kind of like myself so I'm pretty happy about it!

Our life is honestly exactly the same as it was before we had her, except for that now there is one more family member. We're the four muskateers instead of the three muskateers. We don't do anything differently other than we have a pink diaper bag and a really cute baby with us. We need more space at restaurants. It takes us a little longer to get out the door if we're going somewhere because there are two kids to get ready instead of just one. I have a distinct feeling that this is the same for pretty much every family when they choose to add another child to the barely controlled chaos that is parenting.

I just feel so free. Free to enjoy my family, free to love both of my kids so much it hurts sometimes, free to be me. Free to be normal!

Thursday, April 19, 2012

All clear from the surgery peeps!

Yesterday we had Lauren's follow up with the surgical nurse practitioner. Lauren is basically amazing, but you already knew that!

She's doing awesome, her incision area looks great, chest x-ray was perfect and she weighed in at an even 8lbs! They'd like to see her gaining weight a little faster so it looks like there will be no sleeping through the night at this house for the time being. Dang it! I think she'd do it too, if I was able to let her. They're fine with me leaving her NG tube out which is great, I really thought they'd want me to put it back in!

We also had a weight check at her pediatrician (nothing like 3 appointments in one day, right? Surgical visit, x-ray, and pediatrician) and we got to see my favorite pediatrician! We've been seeing her since our son was born so I'm thrilled that she's available to see Lauren too. I love this woman. She never even really mentioned Lauren having Down syndrome. She just said, "Lauren may need a few more specialty appointments than Ryan but everything else can be managed here." We got referrals for Early On (our state's early intervention program) and for Lauren to see a pediatric opthamologist in a few months.

Her pediatrician decided to do another hearing test, even thought we see the pediatric audiologist in October. Lauren passed!!! People with Down syndrome tend to be a little more prone to ear issues due to small ear canals so that's why we'll see an audiologist. I had hearing loss as a kid (and had tons of ear infections, tubes in my ears finally fixed the problem) and it sucked, so I'd like to be on top of any of hearing issues as much as possible.

I also ventured out for the first time today on my own with both kids! We went to MOPS at church and get this....we were ON TIME!!! It was wonderful to see everybody and I loved getting to introduce Lauren to so many women who have prayed for her since before she was born. I also got to play with Ryan outside since the weather was gorgeous. It was an awesome day!

Sunday, April 15, 2012

Full OHS post

It's about time I wrote a full post about Lauren's open heart surgery. As a disclaimer, there are pictures included and some may find them graphic.

The night before surgery Greg stayed overnight at the hospital with me. I was so happy to have him there. I held Lauren most of the night, I was so afraid to let go and a big part of me was terrified that it would be the last time I got to hold her. I think I slept about 2 hours that night, if even that much.

The morning of surgery the nurse came in and told us they'd want to come get her around 7:30am. Greg and I took turns holding her and talking to her. I told her how much I loved her, how much she was wanted, how in only 6 weeks she'd already shown me so much about life, love and being a mother. I told her that I was the lucky one, how I'd waited my entire life to meet her. I hugged her close, inhaled her sweet baby smell, memorized her face and committed those last moments to memory. I was afraid, afterall, that they would be our last together.

We walked with her down to the pre-op area and held her until they came to get her from us. Handing her over was absolutely terrifying. I have never felt fear, sadness and grief like that and I wouldn't wish it on anyone.

We got a few updates throughout the course of surgery. One when bypass had started, one when the procedure itself was complete, one when she was off bypass and one when surgery was totally over. It was about 2 hours after the last update until Greg and I could see her in the ICU. Here are some photos:

Close up of Lauren with all of her tubes and wires:
More tubes and wires:
All of her tubes, wires and other fun accessories are her breathing tube, a tube to inflate her stomach a little, heart monitor, respiratory monitor, pacer wires, chest tube,IV, central line, pulse oximeter and blood pressure cuff. I might be missing a few.
It was such a scary day for our whole family and our friends. But it was also the day that saved Lauren's life. We had no idea that she'd go into heart failure at just 3 weeks old and need surgery so soon. I am so thankful for and to all of the nurses, tech's, doctors, med students and hospital employees at U of M for the wonderful, competent and compassionate care Lauren received.
She is doing SO well. She yanked out her NG tube on her own on Thursday and I haven't needed to place it again. She's growing bigger and stronger. I am thankful for every minute I get to hold, cuddle, rock and care for her.
Thank you so much to every single person who reads this blog and thought of Lauren, prayed for Lauren and for Greg and I in the weeks leading up to her birth and surgery. We felt so loved, supported and encouraged throughout this whole experience. Thank you to my friends at MOPS and all of the girls at my table. Thank you for taking the time to pray for us and taking time away from your families to bring us meals and give us a care package. Thank you to all of the girls in my bible study for the prayers, encouragement and visits. We loved and appreciated every single visit, card, thought and prayer. Thank you for loving our little girl almost as much as we do.

Monday, April 9, 2012

Guess who's HOME?!?!

Lauren is home from the hospital!!! She celebrated by drinking her whole bottle and not needing any through her NG tube! She also celebrated by pooping through her diaper, onesie, outfit and blanket! I had to literally cut the onesie off of her because I couldn't make myself pull it over her head!!!
It feels SO good to have our little girl home with us. Our family is finally together after 5 weeks in the hospital (11 of those in the ICU), open heart sugery, sepsis and a collapsed lung.
Happy Easter everyone!

Friday, April 6, 2012

My wonderful husband

It has recently been brought to my attention that I never talk about my husband. The picture above describes our relationship perfectly....just kidding!

Seriously, Greg is an awesome guy. I'm one of those extremely lucky people that got to marry my best friend :) He was the one who was strong when we found out that Lauren had Down syndrome when I was pregnant. Right away he said she's ours, we love her, now lets learn everything we can to help her. He was my rock at that time and has been a wonderful father since we had our son Ryan almost two and a half years ago!

He is funny, sarcastic, hard working, kind and supportive. He made sure nothing got in the way of me graduating nursing school and becoming a RN. He is a great partner. We've been together for over 10 years now! Don't worry, I promise I was not a child bride.

I can honestly say I am infinitely more in love with him now than I was when we got married 3.5 years ago.

(See, I do talk about you!)

Wednesday, April 4, 2012

Why Me?

When we found out that Lauren would be born with Down syndrome, I admit that I felt a lot of "Why me?" or "Why us?" I wondered what the heck we did to deserve it. I wondered why WE were the ones being stuck with a "broken" baby when drug addicts and complete morons are given healthy children.

Then I moved on to "Why not me?" and "Why not us?" We are no better than anyone else and that's just the way the cookie crumbles. Some people just get the short end of the stick.

Now I can honestly say I'm back at "Why me?" and "Why us?" but for completely different reasons...

Why me? Why us? What in the world did we do to deserve a living miracle? What have I done in my life that makes me worthy of such an amazing child to raise? We are no better than anyone else. So why did we get so damn lucky?

Lauren is barely 7 weeks old and has overcome a long hospital stay, sepsis, a collapsed lung, open heart surgery... How could anyone believe...how could I believe that she is somehow "less"? Less than what I deserve, less than what I need, less than what I wanted, less of a person, less mine. Lauren is so much more than anything I could've imagined for myself. So much more than I thought I wanted in a daughter. She is a living miracle. She is perfect.

Every time I look at her I am overcome with pride that she is my daughter, that I get to be her mom. I am so proud of her accomplishments. I am proud of every breath she takes.

Monday, April 2, 2012

Update over the last few days

The last few days have gone really well! Lauren hasn't had any fevers or anything and there is no sign of infection. They've been able to wean her morphine from 80mcg/kg/hr (micrograms per kilogram per hour. Just the dosage info!) to 15mcg/kg/hr! That's really great and she's been very comfortable. I even got a little hint of a smile today when I was holding her!

Unfortunately her left lung collapsed after she came off the ventilator (I promise that sounds a bit scarier than it really is) and she's now on a machine that blows high pressure oxygen into her lungs to open up the alveoli (small sacs in the lungs that actually hold air!). She's done really well with it and her lung is definitely getting a lot better! It definitely adds time to our ICU stay which is a bummer but slow and steady wins the race :)

I actually got to help with giving her a bath today! It was such a normal mommy thing to do, I loved it. So did she! She's like a mermaid the way she loves water. I cannot wait until I can give her real baths again and she can be fully in the water! It's very calming for her, she loves it. It was so great to get to bathe her and hold her on the same day!

We don't really have any type of timeline yet as to when we'll be out of the ICU and when we'll get to bring her home. But the nurses have been mostly awesome which helps a lot! There isn't really a great place to sleep in the ICU because the area we're in is a big open space with curtains separating the beds so I've been going home at night. Which has actually been great because I'm spending more time with our awesome 2 year old! I have really missed tucking him in at night and waking up with him in the morning and I know he's missed it too. He's been such a trooper! He got to visit his baby sister today in the ICU and was very happy to see her!!! (For about 2 seconds, he is a two year old afterall)

I'll try to update every few days and I have pictures to add at some point :)

Best day ever

I GOT TO HOLD HER!!!!!! Words cannot even explain the physical ache in my arms over the past four days. Not being able to hold and comfort my daughter as I told her how incredibly thankful I was that she is alive was torture. I feel so complete that I am lucky enough to be able to snuggle both of my children. Just think how awesome it will be when I can snuggle them at the same time!!