Monday, January 30, 2012

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.

Monday, January 23, 2012

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!

Thursday, January 19, 2012

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

Monday, January 16, 2012

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

video

Friday, January 13, 2012

A Birthday Visitor

This weekend we're having a party for Ramsey so we kept Ramsey's birthday pretty low-key.  As much as I wanted to invite everyone and anyone, we decided a party at home with family and a few friends was the best option. Tonight, however, Ramsey had a visit from someone special- ELMO! Thanks Gina, I mean...ELMO, for the surprise visit.

Special props to Reed for letting go of his fear of costumed characters! After all, he was right when he said, "I am are 4 so why should I be afraid of Elmo?"



Thursday, January 12, 2012

Happy 1st Birthday Ramsey!

Look how old I am- one finger!
It's hard to believe a year has passed. We are so thankful God's plan led us to this day...Happy First Birthday Ramsey. We are so proud of you! You've accomplished so much in one short year.

Ramsey's Top Twenty Achievements (because 10 was just not enough):
20.   Rolling over, both ways
19.   Improving an already perfect smile with 4 beautiful teeth
18.   Beating your first viruses
17.   Battling reflux
16.   Learning to crawl
15.   Pulling to stand, and "shuffling" along the table
14.   Babbling hints of words like mama, dada, and even santa
13.   Eating- first formula, then nursing, then moving on to solids
12.   Pooping
11.   Enduring the helmet which rounded out your head
10.   Surviving that first rough day and those that followed
9.     Waiting patiently to be held by mommy and daddy
8.     Avoiding ECMO
7.     Handling CDH surgery with flying colors
6.     Teaching others what really matters
5.     Melting our hearts
4.     Inspiring hope
3.     Smiling through it all
2.     Breathing
1.     Surviving

We're honoring Ramsey's birthday with a collection for families staying at the Ronald McDonald House of Pittsburgh. Want to help? Read more here.

Wednesday, January 11, 2012

Help Us Honor Ramsey

In Honor of Ramsey’s 1st Birthday, Help us Support the Ronald McDonald House of Pittsburgh.

Ramsey spent 61 days in the NICU following his birth on January 12, 2011.  Thanks to the Ronald McDonald House, we were able to be with him each of those 61 days. We had a place to call home. A place to share with our oldest son Reed when he was lucky enough to visit. We wish to honor Ramsey by helping others who call the Ronald McDonald House their temporary home.  Our goal? To create 61 welcome bags in 61 Days. 

Families facing the weight of a child's illness are often so busy taking care of their child; they forget to take care of themselves.  Some families arrive unexpectedly with just the clothes on their backs. We'd like to prepare packages to help other RMH families feel welcome and remind them there are people who care.   

If you would like to help us in honoring Ramsey, visit the page "Gift of Giving" for more details!

Monday, January 9, 2012

Follow-Up at Children's

Ramsey had an awesome appointment today with his surgeon. His X-Ray looks much like the last one...there are no signs of herniation at the diaphragm! We discussed a plan to repair the hernia on his stomach (not to be mistaken with his birth defect). When Ramsey was born the hole in his diaphragm allowed his stomach and bowels to migrate into chest. After the repair of his diaphragm there wasn't quite enough room in his belly to accommodate them so a patch was used. This has resulted in a hernia. It bulges most of the time and is worse when he cries. Recently, his constipation has become an issue of concern. I tried my best to alter his diet, but that didn't work. I finally resorted to giving him MiraLAX and even that leaves him crying as he pushes. Once the hernia is repaired, we are hoping that he might be able to go more easily because the muscles in his stomach will become stronger and more symmetrical.

The plan is to return in the spring for another X-Ray and to schedule the surgery for June. We could do it now, but there are so many viruses this time of year, they don't want to risk him getting sick as he recovers from the surgery. The incision will be in the same spot as his previous one. There will likely be extra skin that the surgeon can pull taut and possibly clean up his scar a bit. Although, I have to say the scar already looks fabulous!

Three days until the big day!! Ramsey is turning ONE! Watch the blog for an announcement of our plans to honor him.

Thursday, January 5, 2012

Sorrow and Joy

I have been anticipating the new year for months. I had this perception that I needed a fresh start. I waited for January 1st hoping 2012 would bring easier days. Ramsey's birth and the prospect of losing him was the start of a rough year. Other difficult times followed. I remain thankful for the gift of his life, and for the countless ways we've been blessed amidst trials. Still, I just wanted to start over.

Then came my newsflash: life isn't about starting over. Life is one continuous ride. It's a journey complete with ups and downs. The good times make us smile. The bad times make us stronger. Often, we take the good times and those we share them with for granted. Difficulties leave us thankful and often surprised by the support we're given and the strength we're provided.

Ramsey's birthday is only a week away. It's the special day I've been waiting for, more anxiously than I've waited for January 1, but my joy is juxtaposed with sadness. Sometimes the ups and downs happen too quickly. The good and the bad occasionally merge. This week they've collided.

I am in complete shock and heartbreak for my brother as we mourn the loss of his fiancé, Elaine. I can't think of another person more equally beautiful both inside and out. She was compassionate, sincere, loving, complementary and non-judgmental...and that's just to name a few of her strong qualities. Her death is untimely. We can only hope that one day, we might understand why it had to end. We know that despite our sorrow, we must seek good...like the organs she has donated. Like the families at the Ronald McDonald House who will benefit from memorial contributions made in her name. Like the example she made each time she spoke the words, "I Love You" because she NEVER forgot to say them.

Don't wait for a new year. Appreciate each day, each hour, each minute. If you love someone, say it. Life's not always easy but we should never take it for granted.

I love you, Elaine and I miss you already.