Rare Disease Day

Today is Rare Disease Day.  I never thought that this would be a day that would affect me or my family.  Last month I posted about or little Jack's diagnosis of Cystic Fibrosis. You can read it here. Since than we have done our very best to stay positive for our little man.  It hasn't been easy with multiple trips to the specialist, researching, learning about the disease, testing and therapies.  There are days I find myself feeling very down but I have no time for that. His therapies are just beginning and although he takes them like a champ I end up in hysterics.  There is just something unnatural about hitting on you 7 week old baby's back. His nebulizer treatments will begin soon and will continue for his lifetime. It's hard now especially knowing I have to go back to work next month. I want to be with him every waking second.  I want to hold his hand through it all.

We may not understand the hand we have been dealt in life but we have to play the game any way. It may not be what we expect in life but  it's beautiful none the less.

Scenes From Maternity Leave

Maternity leave has been nothing short of amazing and exhausting all wrapped into one. Jack will be 8 weeks old on March 5th. I can't believe how quickly it all has gone by. I'll have to go back to work on April 1st and it is already breaking my heart. What I wouldn't do to stay home with my little angel forever. 

So far this is what maternity leave looks like around these parts:

- Somedays I don't get a chance to brush my teeth till the afternoon.

- I'm lucky I get a shower every other day. 

- I've watched the 3 final seasons of One Tree Hill on Netflix. 

- Everything is done around feedings and pumping. 

- My boobs hurt more than I could have imagined. 

- Doing things one handed hasn't been good to my floors or  carpets. My carpets see more coffee, water, juice and food than my mouth does. 

- I see the 4am hour more than anyone should. 

- I've gotten very familiar with Law and Order SVU episodes. Marathons take place every Tuesday and Thursday. 

- We moved an accent table out of the living room and replaced it with a changing table. 

 - I eat like there is no tomorrow. 

- I bought a pair of jeans and yes they are 2 sizes bigger than I'd like. 

- Most of the time I only go out for Jack's doctor's appointments. 

- We started Jack's CPT therapy for his cystic fibrosis. I cry every time we do it. 

- Jack and I read all the time. 

- I sing to him and he likes it which amazes me because I really can't carry a tune. 

- We cuddle a lot and we try to nap before daddy gets home. 

- The days just fly by. 

- I forget things constantly. Like my credit card after spending $75 at Walmart and having to run home for my card. 

- I have cabin fever so bad! 

 - There are days when I'm covered in either poop, pee, formula or puke and I do't mind. 

- I've taken over 500+ pictures of Jack.

- I look at Jack in amazement. I still can't believe he is mine. 

- The relationship with my husband has gotten stronger than we could have ever imagined. 

- My heart feels like it could explode with joy every second of every day. 

New Mommy Favorites

As a new mom I will admit I was pretty oblivious to how many items and just how much work a how much work newborn really is.  Jack is a pretty easy going baby and he only cries at night or when he isn't close to mommy.  I feel like I'm always on the move; feeding, pumping, dishes, cleaning an its usually in that cycle all day long.  Im lucky that Brian is so hands on and is able to help after work. All of this plus trying to remember to take care of myself has been tough.  Here are just a few of the items that have been helpful to me as a new mom.

Via

Pump and Save Bags have been easy to store and freeze. I started off using the Medela brand but just found the Target brand is a few bucks cheaper. Target does it again!

Via

Organic Nipple Covers- These are reusable and much better for my wallet and the environment

via

Green Sprouts Burp Clothes- Jack is a spitter. These are the best I've used. They are longer, thicker wider and are shaped better than any others I have used. 

LL Bean XL Canvas Tote- It's HUGE and is perfect for a long day out when my regular diaper bag is too small. 

Via

Medela Hands Free Pumping bra- I've found pumping to be tedious and boring. At least with this I have been able to have contact with Jack and even bottle feed him. Yay for multitasking mommas! 

Via

Quick Clean Wipes- These are always in our diaper bag. The are easy to use especially on the go.  

Here are just a few more things that have come in handy: 

- Large water bottle because it keeps the trips back to the kitchen down to a minimum.

- Trail mix, granola bars, pretzels and other easy to grab and go snacks.

- Dermaplast and Tucks pads- After the pain of a natural birth there are not too many things that make you feel good down there but these 2 items definitely helped.  My hospital supplied them but I would suggest purchasing them because I used 2 of each packages.  They were a huge help.

- Yoga pants, open front top/robe- I prefer the the roll down waist yoga pants but I pull them up over my tummy.  The open front tops were helpful when pumping and nursing.

- Nursing Cover- After Jack was born we had non stop visitors which made it difficult to pump and nurse comfortably. I also bring it along wherever I go just in case.

What are some items new moms have found helpful?

Jack's Favorite Baby Items

I can't believe my little man is already 6 weeks old. I've heard the saying "The days are long but years are short" and it is so very true.  In the last several weeks we have had the joy of playing with and utilizing all new baby items.  These are a few of our favorites.  

Throw Blanket- Jack loves to cuddle with this blanket. It was a gift from his aunt and uncle for Christmas. They purchased it at Home Goods. I had seen it weeks before and fell in love but didn't buy it wight he holidays fast approaching.  

Halo Sleepsack Swaddle- Jack was not the bigger fan of being swaddled and would get out of any blankets I swaddled him in. The sleep sack swaddle worked perfect for him. I felt comfortable with him sleeping in the sack while on his back. He has been a roller since birth and it scared this new mommy. Our pediatrician suggested swaddles to help reduce him rolling and it worked. 

Organic Cotton Mittens- I have a face pincher. When Jack is upset he pulls and scratches at his face. He has drawn blood several times and its heartbreaking. Although he does not like them he wears them especially on the overnight hours. 

Skip-Hop Treetop Friends Activity Mat- This is a new love for Jack. Since he started focus on things this has become so much fun for him.  He talks to his little hanging friends too. 

Baby Delight Snuggle Nest- We both love sleeping close to our little man. He's not as thrilled with it. He would much rather sleep on me or Brian. We put the snuggle nest in bed with us and its super easy and portable to bring along with us when we have stayed at grandma and grandpa's house. The nightlight and sounds are perfect when soothing him to sleep or finding his pacifier in the middle of the night. 

Weleda Diaper Cream- I had an abundance of butt paste and many other items for diaper care but when I used this as a sample I was so happy with this produce. It is pricy ($14) but all the other diaper creams don't hold a candle to this one.  

Sleep sheep- We love the Sleep Sheep. We are a fan of the whale sounds. I think my husband likes it even more than little Jack does. There are several other sound options like mother's heartbeat and ocean waves. It is very soothing for us all. 

4 Moms- Momma Roo This item is by far the best we have in our house. Jack hates sleeping on his back. Most nights he hates being in his snuggle nest and co sleeper. He loves the slope of the this and sleeps so sound when he's in it. The motion of the car ride is his favorite. Last night he slept 9 hours in his Momma Roo. It was wonderful. 

Tommy Tippee Bottles- These have been a life saver. Jack's reflux has improved greatly since investing in these. Dr. Brown's bottles have also worked well but I've noticed a big difference since using these. Plus I find these easier than the Dr. Brown's to clean. 

Boon Drying Rack with accessories- These are perfect. They take up little space on the counter but holds almost all of Jack's bottle items. Plus it's super cute. 

All photos and items found here 

Green Sprouts Burp Clothes- Goodness gracious the amount of spit up is insane! I swear there is a burp cloth with in arm's reach at all times. If not I have been caught using my sleeve and even pillow case. Have I mentioned how much more laundry we do since baby arrived? 

What are some of your favorite items?

Check back tomorrow because I'll be sharing some of my new mom favorites.  

Mommy and Me

Today Laura completely inspired me with her blog post.  

As I read her post it was like she had read my mind. The words felt as if they were pulled right from so many conversations I've had with others. As new mommies we take on so much. So many times we forget to take care of ourselves. In doing that we can feel unattractive so we shy away from the camera. Since Jack was born I have taken about a zillion pictures of him. I have taken most of them with Brian, his grandparents, friends and Bogart and barely any of me. I have to realize that down the road Jack will have barely any pictures of his mommy. That just shouldn't be. Today I am linking up with Laura and dedicating an entire post to pictures of Jack and I. No matter how tired I may look or how unattractive I feel in these pictures they are still getting posted because Jack is worth every extra pound, swollen eyes, puffy face and double chin! 

The saddest part of this post is...These are it. There are no more. My son is 5 weeks old and this is all I have and it makes me very sad. Eight pictures?!?! Reality check. I have to make a conscious choice and fix that! 

I hope you will share your pictures and link up along with me over at Little Moments, Big Moments.  

Jack- 1 month

On February 5th Jack turned 1 month old.  Seriously?!?! Time would you please slow down! I feel like we were just rushing off to the hospital. My little man  changes every day. It's amazing. What a roller coaster this last month has been. 

Weight and Height- Jack now 8 pounds 15 ounces. He was born at 8.2, lost some and has now gone back up! He is gaining weight which is an awesome sign. Considering his diagnosis of Cystic Fibrosis weight gain is huge for him. This may be a great sign in the future for treatments. Jack is also 21.75 inches. His weight is perfect for his height! 

Health- Jack continues to go back to his specialist every two weeks. We met with his nutritionist and social worker.  They are hopeful and positive that he will have a mild case. This doesn't exclude him from treatments but its something for this very scared mom to grasp onto. We will meet with his respiratory specialist next appointment to discuss treatments. Keep those positive vibes and prayers coming. We appreciate them more than you know. Jack is now struggling with some reflux issues too. 

Sleep- Jack is a great sleeper. He does not laying on his back and will wake up a few times a night. He slept through the night 3 times this month.  

Crying- Jack barely cries. He likes to be held but I'm sure that is my fault. I can't help but holding him the majority of the time. His daddy is also guilty of this. He picks him up the minute he gets home from work and doesn't put him down. 

Clothes- Jack is still in newborn. He doesn't seem to be growing out of them anytime soon.  

Feedings- Breast milk. Breastfeeding has been difficult for me. It is painful so I pump and nurse. He is using Dr Brown's bottles and he is taking in about 2.5 ounces but we break them up over time. He also sits upright for 20-30 minutes after feeding to reduce the reflux. 

Routine- It took some time but we are in a routine. Mommy feeds him and pumps every 2 hours. The 2 of us nap around 3:30 each afternoon and wake up around 5 when daddy gets home. Our night time routine is great. He gets in the bath and it wakes him up nicely so he is tired by the time we go to sleep. This is usually around 11 or 12. 

Social- Not much going on socially just yet. He is focusing a little more on mommy, daddy and my mom's voice. His best friend is Bogart so far. Bogart LOVES him. I think Bogart thinks Jack belongs to him. He looks out for him and is also close by. When the baby cries so does Bogart or he runs around to us looking for what we think is help for Jack. It's a beautiful thing. 

Jack loves: 

- Being held close to mommy's heart. 

- Being naked. He will fuss when I try to dress him. 

- Gumdrop pacifiers. He is obsessed. These are the brand he got in the hospital and he has refused all the others we have offered him.  

- Taking showers with mom. He loves the warm water on his body. He also really likes the bath.  It is very soothing for him. 

- Car rides! 

- Laying on his activity mat. 

- Piano music on Pandora.  It soothes him so nicely.  

- Taking walks.  

Jack dislikes: 

- Getting dressed. 

- Burping

- Mittens

- Gripe Water

-  Farting

- Laying on his back

- Lossing his pacifier although he pushes it out for attention.  

Look how much he has changed 

Fresh from the womb

1 week

2 weeks

3 weeks

4 weeks

(This is one of my favorites.  He looks like he wants to rage!)

Reflecting...

Reflecting back on there last 4 weeks I am still shocked at what has happened in our lives. Don't get me wrong we prepared the best we could for 9 months but no matter how much you prepare I don't you could ever be ready for bringing home baby and all that it comes with. I remember thinking to myself on our release day from the hospital "Are they just going to let us leave with him?" I cried when we left the hospital having no idea what was next. Plus, I had found myself feeling so connected with our nurses. They basically saw me at my worst, nearly delivered my son, helped me in the bathroom, served my husband coffee and all around cared so well for our family of 3. I would have never thought I could feel so connected with people I only knew for 3 days. There are a lot of things I had never thought I'd feel but emotions and hormones are a crazy thing. So many things have surprised me since Jack had entered our lives. These are just a few of the unexpected things I've felt in the last 4 weeks.

First off, the love for my little nugget is so immense. It has taken over my body, mind and soul. I love him so much I cry about it almost daily. When his eyes well up with tears because he has gas or he's hungry I feel his pain. The joy I feel makes my heart so happy. I am so overjoyed and overcome with love, hope, dreams and even lots of fears too.

I didn't have a clue I would have such an emotional connection to labor and delivery. If you read Jack's birth story you know that I was not as prepared as I should have been. I just thought I'd go in, get an epidural and POOF BABY! That did not happen. Every time I think of my labor, my coaches, and how it all happened I get so emotional. I always felt as if labor was means to an end. I was so wrong. Labor and delivery were truly so much more amazing than originally thought.

I was very surprised that I felt so great after delivery. I was up and moving not long after Jack was born. The next day I was doing laps around the labor and delivery wing. I was showering and even put on some make up.  About an hour after Jack was born I was even asking if my husband would get me a bagel.

I'm amazed at how well I function on such little sleep. I must say Jack is a great baby. He sleeps well and at night and usually wakes up only 2 times a night around 3:30 and 5:30. When I was pregnant I would always wake up between 3-4am too. I tend to get about 5 hours of sleep each night. Which is what I would get towards the end of my pregnancy too. I've decided not to pump religiously every 2 hours at night. I do during the day but I've made the choice that the extra sleep is much more important for me. I take the nights during the week and Brian takes the weekend nights when he is off so I am left with most of the overnight duty.  

Breastfeeding...Ugh, I never really knew how hard it would be. So much harder and more stressful than expected.

Most of all I am surprised that I miss wing pregnant so much. I love having my little man so close to me and holding him in my arms but I really miss being pregnant. Even in those final months and weeks of heartburn and discomfort I really miss being pregnant. I enjoy being Jack's mommy so very much but I'm not ashamed to admit I'd love to continue to build our little family some time soon!