Trending Upwards

Ramsey had his weight check this week. He weighs 18lbs 14 oz. I was worried about the Dr's reaction, because this wasn't much higher than his previous weight the month before. I stressed how he has been sick all month and just recently started showing a real appetite. Fortunately, she wasn't concerned; according to the charts he is trending upwards. I am thankful that he is feeling well and has a good appetite. Now, my hopes are that he will show an interest in some fruits and veggies and some foods that prevent his constipation. He seems to desire all the foods that he shouldn't be eating...isn't that true for many of us!

I can't sleep

My stuffy nose and clogged head have me awake and all I can do is think about all sorts of random things like Pinterest, and blogs and about the fact that tomorrow I'm going to regret being awake all night (since I'll be essentially alone with the boys all weekend). I think my scattered thoughts are being relayed into a rambling blog post. I can't be responsible for anything I might say. I'll blame the medicine.

I have some cute new photos to share of our little guy. He is getting more and more entertaining every day. He is so mischievous. He'll climb on over to the things he knows he shouldn't touch, then just turn around and smile. Any day now, he might just take his first steps.  Something about that seems to miraculous to me. I guess I'm just so thankful for the miracle of his life and excited to anticipate another milestone.

Happy Valentine's Day!

Tongue out in true Ramsey fashion

...and Daddy thinks I don't need a haircut!

I dig my new ride!

Next week, we'll return to the pediatrician to weigh Ramsey again. A month ago, she was concerned that he lost weight and asked us to return in 4 weeks. Since, he has fought a virus, an ear infection and most recently, croup. None of this has really helped the fact that we need him to gain weight. He has a disinterest in a lot of food, and promptly closes his mouth and turns his head to prove it. Most of his favorite foods are the foods we need to avoid because they are constipating. Thanks goodness for some great tips from a fellow CDH mom to help in that territory (thanks Corrine!). We've been adding an ounce of prune juice to every bottle and that has been a huge help. Also, I've starting using flax seed wherever I can to increase his fiber. His favorite? Pancakes with flax seed! Thankfully, he likes Pediasure, butter bread and buttered noodles so I hope that has helped to gain the necessary weight.

Ramsey has been going through an, "I don't want to nap" kind of phase. He will stand in his crib and scream for what seems like forever. I tried consoling him, I tried ignoring him, but nothing helps. He is harder to put down at night too, but it's not as difficult as nap time. I think I finally found a solution; leaving him a bottle with a bit of water in his crib. It's incentive for him to lay back down, and it seems to settle him. The problem with that is that we need to get him transitioned to some sort of sippy cup! I've offered him several, but he seems to lose interest in learning how to drink from them. Since we're trying to get him to gain weight, I guess I'm afraid to take on the switch from bottle to sippy at the moment.

The no nap phase had me a bit worried last week. Twice, he threw up in his crib. He seems to be regurgitating a lot too. It seems like his reflux is worse when I thought it would be getting better. I started to question if he might have reherniated. I guess these are thoughts that always remain as a CDH mom. I called the clinic at Children's. They checked his X-Ray from our ER visit a few weeks back (when he was checked for pneumonia) and said there are no signs of reherniation. Part of me still wonders what the deal is, but I guess I need to chalk it up to regular baby stuff and simply take things one day at a time.

Rooting for a Reason

During Ramsey's battle with CDH, we found comfort in sharing his story. From his prenatal diagnosis, to his NICU discharge, to his first birthday celebration, we have never ceased "Rooting for Ramsey". We received prayers, support, inspiration, and encouragement through friends, family and even Facebook and blog followers whom we never met. We found satisfaction knowing our son's story had inspired others. We found hope as we raised awareness of his condition and met families who walked a similar path.

Our wish is to offer a platform for other's to share their journey- a place to offer praise, request prayer, or just say how proud they are of someone special. We want to join in rooting for other's, no matter what the reason might be!

::   Are you Rooting for a Reason?  ::

If you have a story or blog to share, visit our new Facebook page to comment or share a photo. The more "LIKES" our page receives, the more support and prayers each posting will be honored with! LIKE us now, please :)

In addition, we hope to feature a different individual each month. A photo and brief description will be requested along with any relevant blog links. Contact Lisa Barnhart Razza via Facebook to nominate your loved one.

Updates

Ramsey went from the fever/virus, to an ear infection, to two new teeth. Despite it all, he has been pretty pleasant as usual. I think the teething has been more bothersome to him than his other ailments. I am so happy that his appetite is back now that he is feeling better!

We continue to be touched by the donations we've received for the Ronald McDonald House Gift of Giving! We are so appreciative that many have stepped forward to help gather donations; we wouldn't be so successful without their assistance. To everyone that has helped or has donated, WE THANK YOU!  Visit the Gift of Giving page to see the latest count.

Medical Updates

Ramsey had his annual well visit this week. To my surprise, he had lost weight. We're hoping it's because he is so active now. I am discouraged that sometimes, it's obvious that he just doesn't want to eat. Other times, he eats like a champ. I had taken him off of his reflux medication, thinking he was past that. Now, I am wondering if that is part of the reason why he turns his head to certain foods. His pediatrician said not to worry about the weight loss; she wants to see him in a month to weigh him again. We are now giving him pediasure and things like buttered noodles and buttered bread to put on the pounds.

He began coughing this week, and two nights ago, he woke up with a fever. As the day progressed, the fever became worse so we took him to Children's just to play it safe. (Why do kids always get sick on the weekend!?) They checked his oxygen and it was good. Next, they did an X-Ray which was clear. We can treat this as a standard virus and hopefully he will be better soon! He just woke now and his fever was back up to 103. It's so unnerving to hold him and to hear how hard he is breathing.

Hope our little guy feels better soon!

Gift of Giving Update

It has only been one week since Ramsey's birthday and we are already receiving a great number of product donations and a few cash donations too!  See below for a rough count of the items we've received. Also, a couple new items were added. I will try to update the "Gift of Giving" page as donations come in.

If we are able to make more than 61 bags, then GREAT...we'll do it! If we end up with extras of certain items, we will donate those in addition to the gift bags. Also, if we have extra of certain items, we will give a couple per bag.

 Travel size products:
Deodorant -   Mens 6, Womens 10
    Shaving Cream Mens 8, Womens 4
Razors Mens 22, Womens 15

Soap/Body Wash 63
    Shampoo 30
Conditioner 8
Toothpaste 14
Toothbrushes 25

Body Lotion 31

Lip Balm 10 +61 more on the way!

Brush/Comb 7

Tissue Packs 36

Hand Sanitizer 13

Notebooks 5

Pens 45

Game/Puzzle Books 2

Disposable Cameras 0

Gum/Candy 9

Slipper Socks 0

Room Decorations 0

Cards 0

Dish Soap

Sponge or Dish Cloth

 

 Other donations we've received: 

Bath Poofs - 61 are on the way

 Hand Lotion 129

Pads

Nail Clippers

Shower Caps

Q-Tips

Cleansing Towelettes

Hair Spray

The Adventures of SUPERRAM!

Celebrating Ramsey's birthday was pure joy. We invited family and a few friends to our home to commemorate the big day.  In my heart, I wanted to invite everyone- our extended family, our friends, our new CDH "family", every nurse, doctor and contact we made from Latrobe to Pittsburgh and of course, everyone who reads this blog. Still, I knew it was best to hold back. Perhaps if it was summer, I might have given in, but it's January and it's germy.  In my heart, I know each of those people are celebrating with us as they have celebrated his success the whole year through!

Before I share some party pics, I need to backtrack to Thursday, his actual birthday. I woke up feeling incredibly anxious. I'd say I fell just short of a meltdown and I really couldn't explain why. Then my friend Liz (mom of Case), sent a text message. It said, "Do you feel extra emotional today ;)". Apparently, her NICU telepathy told her to reach out to me. She said she felt the same way on Case's birthday, and she "meant to warn me", but forgot. (Thanks Liz; I'll remember that - LOL). Liz and I decided that it's not just a fluke that we both had supercharged emotions on our child's first birthday. Yes we were, and are, incredibly happy to celebrate that first birthday but we couldn't help but feel a bit out of control. If you're a NICU mom anticipating your baby's big day, don't be surprised if you feel a little off! And don't say I didn't warn you :)

Now, back to the party details. Since Ramsey is so super, we celebrated with a superhero party. The pics say it all....Happy Birthday Ramsey!! We love you.

The Invitation

Cape Kits!

CDH superhero capes!

That doesn't look like oatmeal!

What do I do with this thing?

Ramsey desperately wanted to help decorate the capes

SuperDino borrowed Reed's cape

If I stick out my tongue, maybe I can fly!

Ramsey checks out the Ronald McDonald House donations