Day 44

It's been awhile since I've updated, so here I am!  Everything has been going very smoothly and we are plugging right along.  I saw the omphalocele dressing yesterday and it looked so good.  The omphalocele is getting so much smaller, granted it will always herniate out when it is unwrapped.  They are pretty much wrapping it flat at this point, well depending on her mood.  When she is upset and they try to do the dressing change her pushing doesn't allow them to push the omphalocele in effectively.  When she's mellow they're able to really get it flat. 

The big news is that she has her surgery scheduled for next week!  Sept. 27th she will be heading in for hopefully final closure.  They won't know for sure whether they'll be able to do it until they get in there and figure out if the fascia is able to stretch across.  If it's not, then they will put in the temporary mesh for a few days to stretch it out.  When it is stretched enough they will do final surgery. 

As for the recovery time, I really don't know and I don't think they do either.  It's really going to depend on how she does eating etc. I'm guessing it will be several more weeks after next week.

Gianna is really developing a personality lately.  She loves to chew on things, play with her hands and toys, be upright or stand (with help of course) and loves to go in her stroller for walks.  She's very visually stimulated and loves to watch people and anything that moves and makes noise.  We spend our days visiting the activity room where we play with different toys that make noises and light up, sit in the exerciser, and lay on the mat.  We take many walks to the garden where we watch the birds and squirrels, the fountain and of course all the people walking around.  We found a playground in on the hospital grounds and we love to sit there and watch the little kids go down the slide and run around.  Every afternoon at 4pm we go down to the lobby and wait for Daddy to come home from work where we greet him with smiles and kisses.  Gianna is laughing more and smiling more.  She is starting to respond more to her name and facial expressions.  We're working on rolling over and balancing sitting up by ourself.  She's doing such a great job developing normally! She continues to work with physical therapy a few times a week to develop and strengthen her muscles.

She hasn't thrown up for four days now and is taking her bottle by mouth a couple times a day and is on continuous feeds for the rest of the time through her feeding tube. 

Last week we had a Patriots party at the hospital where Gianna got to meet Joe Andruzzi a former Patriot's player.  He came over to her and talked with her and gave her an autographed picture personalized to herself.  Gianna loved the superbowl ring he was wearing and he put it on her hand to wear.  We got some professional pictures taken with him, which will be sent to our house in about a month that we will share with you.  We had fun that day and painted a wooden football for daddy.  We also went down to the entertainment center and watched a movie on the big screen.

We had a nice visit from Auntie Lindsay last week and walked in the garden with her and had lunch.  We had a great weekend with Nana and Bumpa this past weekend.  Dan and I really enjoyed this past weekend as Nana and Bumpa treated us to tickets to see Paul Talor a jazz sax player and Steve Oliver a jazz guitarist at Scullers in Boston Friday night.  It was LOTS of fun!  They stayed over in Boston the whole weekend and had a fun visit with Gianna Sat.  Sat night the four of us went over to the North End and had a nice dinner at the Kinsale and then walked over to Mike's Pastry where we bought some delicious cannolis and ate them over by long wharf.  It was chilly out by the water! Thank you Nana and Bumpa for a great weekend and getting Dan and I out! :) :)

Sunday we had a great visit from Aunt Kim and Uncle Jim!  Gianna got a really cute stuffed doggy from them which she loves! She also would have gotten some beautiful balloons, but they don't allow latex balloons in the hospital...it's the thought that counts!  Gianna says thank you!  Mommy and daddy thank you guys for treating us to lunch! It was great to get out and have some good laughs! You guys are a great time period! ;) Thank you!!

Could everyone please keep my mother in your prayers as she just had surgery on her hip and is not doing so well.  She is in a terrible amount of pain and is having to stay over at the hospital because of it.  We pray for your quick recovery Nana and that you start feeling better!!

I feel like I'm forgetting something....but the geeg is now awake from her nap and I must attend to the princess! Here are a few pictures we've taken recently!

Love and Prayers,

Dan Kaite and GEEG :)

Day 28

It feels really crazy saying that we've been here for 28days.  At times it feels as if it's flown and at times it feels like we've been here for much longer.  I think we'll be here for a little while longer.

Tuesday Dr. Buchmiller came up to do the dressing change and I was able to kind of get a sense of this weeks plan.  She said that she'd be coming up to wrap it everyday and that she wanted to give it until next Tuesday where we would reassess. If we don't make the progress she wants to see by doing compressions she was talking about possibly sending her back down to the ICU to put her back out and suture in that mesh material around the omphalocele and hang it like we did last time gradually forcing things back in.  She said that would probably take three to four weeks to do.  She said if it did make progress this week then we would continue what we're doing until the omphalocele reaches skin level.  Fortunately she has made such good progress this week. It's not skin level but it definitely looks so much better than it did. The fellow that works under Dr. Buchmiller has been doing her dressing changes this weekend and said that Dr. Buchmiller will be so impressed with the progress it has made. We'll see!

Right after these pictures were taken she threw up...a little too much pressure on the old belly.  They had to loosen things up a bit.  It's definitely trial and error! 

You might notice her lovely feeding tube is back in.  She wasn't eating enough or able to keep her food down taking it by the bottle so they put the NG tube in.  She is now up to full volume via feeding tube and is now off her alternative nutrition via IV.  Nice not having all those extra wires hanging off of her. Definitely makes it easier to hold her! She still throws up occasionally, but we think it's primarily due to too much pressure or withdrawal from her Ativan.  Last night they had to give her a rescue dose of Ativan because she was withdrawing.  She got really sweaty and then had the dry heaves.  Poor lil muff muff.

So lets back track a little bit.  We had a great week with lots of visitors! Last Sat. Grandma, Grampa, Great Grandma and Great Grampa came in for a visit! We had lots of fun visiting! Gianna looooved the attention! She's definitely a little show off with that coy little smile of hers! Thank you Grandma for the yummy zucchini bread! We have been enjoying it! :)

Monday Auntie Chrissy and Great Uncle Fred came in for a visit and Auntie Chrissy took mommy and Uncle Fred to lunch....thank you so much! It was great to get out and enjoy that beautiful sunny day! It was like old times with Fred...all that was missing was Jess and Pam!

Tuesday Auntie Lindsay came and we had a great visit out in the Prouty Garden.  Gianna slept for the most part, but that gave Auntie Lindsay and mommy some time to chat! Auntie Lindsay also taught mommy how to crochet! I'm ready to start whipping up blankets, sweaters, and scarves...HA riiiiight. It's a knotted mess!  Thursday Nana and Bumpa came for a visit...Bumpa surprised us! We had lots of fun playing with Nana and Bumpa and mommy enjoyed her time out with Nana and Bumpa at Souper Salad :)!  Gianna says thank you for the cute pink outfit and mommy and daddy thank you for the yummy meals!  You can see Gianna giving Nana "feel yoops!"

Friday Uncle Joe and Aunt Sara came to visit and brought Gianna some really nice flowers and yummy chocolates.  She liked showing off for her Godfather Joe...standing, smiling, and talking.  Thank you to Joe and Sara for taking us out for dinner!  We had SO much fun!! They took us over by the Prudential to an awesome restaurant "Atlantic Fish" where we had lots of laughs and great seafood! Thank you guys...it was great for us to go out like that with another couple!

Sat. Aunt Pam and Uncle Fred came back in to visit and we had a great time laughing and visiting! We really miss coming down to visit you on the Cape and can't wait until we can bring Gianna down there for a visit! We always have such a good time with you!  Thank you for lunch at Boloco's! 

So we've had a great and busy week!  Here are some extra pics taken throughout the week.  I will make sure to update you all on Tuesday when we find out what's happening.  Everyone have a great Labor Day! Yay for long weekends! :)

We love to read books together!

 Nothing better then a little nap with Daddy!

 "Um mom could you please put down the bloggie and push me!"

 "Lily this is what you're supposed to do!

 "Well I guess I see what you mean about not wanting to sleep very long...too much to see!"

 We loooove our catapiller!

 "Um Dad...you missed my mouth! I want ice cream!"

 "I can't believe he forgot to give me ice cream mom!"

 "Hmm...how can i get some..."

 "Oh it's too exhausting to figure out!"

 "Heeey what are you doing in my crib!"

 "Well since you're here you wanna play!"

 "Um, Sara you forgot to flush out my line...I'll do it."

Love and Prayers,

Dan, Kaite and Gianna