Update on Baby Ricky

People are always asking me for information on Baby Ricky and I finally have some new pictures and news to share.

Ricky is doing very well - he weighs in at a whopping 10 pounds 6 ounces. Babies with Trisomy 18 - even when they survive and reach the age of 1 or 2 they rarely get over 11 or 12 pounds - the fact that at 4 months old he is over ten pounds is a miracle!

Ricky was in Hartford Hospital for 2 weeks to have a G-tube placed. This would allow him to get more food in a much easier manner than the Nasogastric tube that he currently has. Unfortunately, Ricky underwent testing and it was decided that if they were to intubate him to place the G-Tube (A tube that goes straight into the abdomen for feeding rather than through his nose and into his stomach) he would never be able to be extubated. So he continues to pull his NG Tube out and Casey and Rick continue to feed him constantly because he gets so little through the tube.
Ricky smiles and coos all the time. His personality is clear the moment you see him. In the hospital he had charmed every nurse and doctor there to the point where they were having their spouses come in to meet him. He is just amazing to behold!

On top of everything else, Ricky contracted the flu while in the hospital. It took them a few days to test him for it and by the time they did he had fought off the fever and symptoms himself and was on his way to recovering. This is virtually unheard of for Trisomy 18 babies. The flu is most often fatal and this little trooper managed to get rid of it all my himself. Ricky is on oxegen all the time now and requires quite a high percentage to stay saturated. That being said - as you can see - he is nice and pink so it is working and Casey and Rick are very happy with that.

The doctors in the hospital finally realized what it takes for Casey and Rick to care for Ricky each day - one is always awake and watching him in case he has a blue spell, feeding takes 1 1/2 hours and by the time things are cleaned up and his tubes are clean it is time to start again and he gags on his own saliva and needs to be suctioned out often - sometimes 6-8 times an hour. The doctors have now managed to get Rick and Casey and nurse for 8 hours a night so they can sleep and not worry about the baby. The nurse bathes the baby, feeds him and monitors his breathing. Casey said that it is the best thing that ever happened but she still wakes many times a night to check on him. Casey and Rick both feel that since their time is limited with Ricky it is hard to go to sleep and possibly miss precious time that they have with him. That being said they are planning a move to Ohio in the spring and are exhausted with all of the work they are doing. Casey, Rick and Ricky are going to move in with Rick's mother so that they have more support and have an easier time financially. I am bummed that I won't be able to see my little guy anymore but this is truly a great thing for Rick and Casey and Baby Ricky. I feel so blessed to know this family and to know Ricky - he is such a miracle! So enjoy the pictures and remember to keep them in your prayers!

GNM - ILY!

Everyday is a dress up day in our house!

Grammy and Papa are coming home soon - the kids are already making signs and getting ready. In the mean time, though, we asked Molly to watch the little girls and she decided to have a fashion show. All we could hear was them giggling in the baby room and finally Molly let us in to check things out! It was so much fun seeing what they had come up with!This came home from school with Molly on Friday - my beautiful goddaughter made it for me and I thought it was just beautiful! Hopefully Brigid doesn't mind that Julia sent it home for me - sometimes she does that and then I find out she was supposed to bring it home. Smores and the opening ceremeonies of the Olympics - so much fun but we were up too late!Ellie didn't just have on a costume - she had a costume and a flower wrapped around her.My beautiful, gorgeous Ellie Bean - I love that smile!The Best big sister ever! She made herself an angel to watch over the other girls.Monkey Baby!Lizzie was a pirate with a cow skirt on.I love those big blue eyes! Ellie was becoming unamused with her get-up. Annie had just woken up and was a little slow to get into the act.As you can see from her serene pose her pink eye is so much better!Now she's all dressed up - my beautiful girl!My little monkey! Lizzie in her flower hat - Molly kept calling her her "little daisy"!My girl - the leader of all the fun with the girls in our house! She is amazing!She looks a little like a banker in this one - too cute!Then Ellie got all Gangsta thanks to Molly!Lizzie trying out her big sister's Cleopatra costume!

Molly and Lizzie loving on each other. We have lots of cute surprises for the kids tomorrow for Valentine's day - heart shaped pancakes, candy and a special necklace that Bob got for Molly for being his oldest daughter! I'm sure I'll have more pictures to post tomorrow! Tonight we had a great time with Auntie Kate, Colin, Meg and the kids - we ordered pizza and watched the UCONN game - Auntie Kate brought pie and ice cream and then Auntie Kate took the 2 oldest girls to KK's house to visit. I am always in awe of how very lucky my kids are to have such loving and wonderful people around them - they are just surrounded by people who teach them love and compassion and want to be with them - what a gift! So Bob and I are going to watch Survivor and wait for our girls to get home. Happy Valentine's Day to everyone! GNM - ILY!

H-W's on sugar!

The kids had a snow day yesterday but the snow came so late that they barely got to go out and play. We also had a lazy day - stayed in pajamas - ate - drank - made cookies, sang, danced - all of those wonderful things that you get to do when you are all home all day with nothing to do! Right in the middle of the snow day the mailman delivered a big package from Auntie Beth. It had LOTS of candy in it and the kids got good and crazy from it!

Molly wearing her Hawaii sweatshirt from Auntie Beth's package.
I was trying to get a picture of Annie with her pink eye!


It was not really pink eye but an infection in her eye from putting Molly's lip gloss on her eyes - you remember the adorable pictures I posted a few days ago - well - this is the result!

I couldn't do it justice but needless to say her eye was red and swollen and looking pretty nasty. Good thing she is a cutie!

Lizzie was indulged in some serious chocolate from Auntie's package and she loved it! Molly took this picture and Lizzie just wanted to get down and run around. She was on a defintie sugar high!
Grammy and Papa are coming home from Florida at the beginning of next week - we can't wait! The kids are already making plans - little do they know the enormous amount of work that Grammy and Papa have ahead of them to fix up the house once they get home!

Every morning we have some fun before the kids go to school. Sometimes there are wars and other times we just have a blast and then the big kids run out to the bus and we spend the rest of the day missing them. This was a video of this morning - all of the kids were dancing but no one was having as much fun as Annie Bananie who is doing a cross of her Irish taught to her by Molly and her Miley imitation which is slightly scary to Bob and I. Make sure you notice Molly and Peter fighting in the background and Lizzie and Ellie sitting at my feet trying to get attention - I love these kind of mornings!

GNM - ILY!