Happy Easter!

All smiles for our first outing this year

The last few weeks have been a bit rough around our house. First Andrew got sick with a nasty cold and then hope came down with a cold. At that point we had weaned her to the point of being off of the ventilator all day. Unfortunately the cold knocked the wind out of her sails and she needed to be back on the ventilator full time. She even got to the point of needing some extra oxygen to help her keep her oxygen levels up. Based on our past experience we were pretty well resigned to the fact that hope was likely going to wind up hospitalized because of this bug, however, her vent team at U of M was amazing! We kept in contact with them by phone and email and they advised us as to what to watch for and how to help Hope through this. Thankfully Hope DIDN'T need to be hospitalized! She is feeling much much better now and we are in the process of weaning her off of the vent again. This time it will be a much faster process than it was before because she has already been down that road (we are adding an hour each day rather than each week)

We hope that everyone had a nice Easter. Unfortunately daddy is sick again so he didn't get to go with Hope on her first outing of the year. As you all probably know we keep Hope on "winter lockdown" during cold and flu season. With her compromised respiratory system we just can take the chance of her catching something. This lockdown also includes not going to church with mommy and daddy on Sundays. Easter is the first time that Hope gets to get out and go to church again. She was all dressed up in her easter dress and very excited to see everyone. Everyone at church was very happy to see her! Since she wasn't on the ventilator she sat in mommy's lap for a few minutes but then since Aunt Emily was visiting she quickly snuggled in with her and took a nap through church.

After church Hope went to Grandma and Grandpa Robinson's house to have lunch. After lunch Hope dressed up in her bunny ears. Grandma Robinson had a bunny teeth sucker for Hope to dress up with too. The ears went over well..... The bunny teeth sucker? Not so much.

I haven't looked back through the old blog posts in a while now but I knew we had a post of Hope on her first Easter. I thought I'd post this picture just to show how far Hope has come. This was Hope's first Easter, two years ago...

Easter & Doctor Updates

Hope in her Sunday Dress

All Smiles

Surveying the Easter Bounty

Cuddling with Great-Grandma Anderson

Hope has had a wonderful couple of weeks. Now that we are coming out of RSV season (cold and flu season to the rest of us) Hope is able to get "out and about" more. She celebrated her "freedom" by making a trip to church on Easter Sunday. Everyone was so happy to see her and she was so happy to get all of the attention :)

After church Hope headed up to Great-Grandma Anderson and Great Aunt Dawn's house to see what the easter bunny had left for her there. After surveying all the colorful eggs E.B. brought she headed home for a nice long nap.

Hope had so much fun at church on Easter that she wanted to go back again this past Sunday, so she put on her pretty white dress and her most sparkly shoes and headed back to church. The easter bunny didn't come to visit her again this week, but she was okay with that because she got some good cuddle time in with Great Grandma Anderson instead. Both Hope and Great Grandma were so comfy that they dozed off and tried to skip lunch.

In doctor news.... Hope's latest trip to the pulmonologist was VERY successful. They lowered the amount of some of the medications she is getting and they have begun to lower her ventilator settings. This is the first of many, many small steps to getting Hope off of the ventilator and eventually without the trach. So far Hope has tolerated the changes VERY well. She has to go in for lab work this afternoon to make sure that everything looks good. Hope doesn't like having blood work drawn :( Hopefully the technician will be very nice and gentle.

Daily Dose: Easter Sunday, April 12

Hope & Grandpa R's hand: look how big she's gotten!!

Hope and her own personalized blanket!

The family

Hope's Easter Dress

Hope's Easter "play" outfit

Hope's fuzzy bunny butt!

Happy Easter to everyone!!!

Hope had a good day today. She was surrounded with family as we celebrated Easter. Hope's day started out with a visit from the Easter Bunny (not a real bunny but a surrogate). The nurses in the NICU hid little eggs around the unit for the parents to find, it was very very nice of them. Then Hope got a special surprise! Hope's favorite RT, Peggy, brought Hope a personalized blanket (shown above). Peggy embroidered Hope's name and date of birth on the blanket. It was so thoughtful and Hope LOVES it!!!

The next big move for Hope today was changing into her very own Easter dress!! Aunt Em came yesterday with plenty of new outfits, including an Easter dress. Hope LOVED the new item of the Hope Collection. It had no ruffles (Hope doesn't like ruffles) and it was very classic and stylish. Classic chic even.

After a nice family picture, with Hope sitting up working on her neck muscles, she had some snuggle time with Mommy and some successful "non-nutritive" feeding. Then it was time for the wardrobe change....

Next, Hope was sporting the "Happy Easter"/fuzzy bunny butt ensemble, also a new feature from the Hope Collection. Hope liked this outfit, minus the difficulties in getting it on. She especially liked the cute little fuzzy bunny on her butt.

Hope is getting very close to 6 pounds, so we are waiting for that big milestone. She was looking incredible this weekend, even when she wasn't always behaving. She is quite the character and such a cutie!!!

Daily Dose: Saturday, April 11

Hope had another overall good day today. As you can see, she got her daily bath and then decided to snuggle up under a blanket before getting her clothes on. Isn't she cute and "filling out"? (she is very sensitive about her weight so I'm not allowed to call her pudgy or fat)

Hope had a bit of an interesting morning. She is still learning how to multitask. She had problems remembering to breathe this morning, and it turns out she was making quite the diaper for mommy & daddy to change during all of this. We are glad that she is so "productive" but still reminding her to breathe through things.

Hope worked on her "non-nutritive" feeding today, but turns out it was quite nutritive. She ended up getting 15mls out of her "non-nutritive" feeding, so for her evening feed she only got 30 mls instead of her full amount.

Hope is really turning out to be quite the competitor in the Biggest Fatty competition. Weighing in today at 2650 grams, which is nearing the 6 pound mark!!!

Grandma & Grandpa R. returned from their brief hiatus to Michigan today. So they were very happy to see Hope and how well she is going. Aunt Em came down to celebrate the Easter holiday as well. And Aunt Em brought some presents from the Easter Bunny just for Hope! These presents will be viewable on tomorrow's blog... but I warn you... prepare yourself for complete and utter cuteness!!!!