Almost a year later...think it may be time for an update ;).
For all of you that were following this blog and were suddenly left hanging and think that we're still in the hospital...we did indeed leave. We left November 4th...a couple days short of three months in the hospital and we left with a beautiful and healthy Gianna, who of course was sporting a brand new belly and belly button!
Fast forward many months, she is now a perfectly normal and healthy 16month old who loves to walk around, touch everything, smile, and explore this very exciting new life! She's very smart and loves to learn new things. She points to everything and wants know what everything is. She counts to three knows the letters A, B, C, and D. Everyday it seems like she says some new word. She loves animals and likes to tell you what each animal says (though sometimes we get the animals and sounds mixed up...sometimes the cow says baa and the sheep says moo lol.) She loves to be outside, whether its playing with her toys on the deck or swinging on her swing. She walks all over the place now and thinks she's big stuff when she climbs up and down the stairs. She is a very good girl and generally listens very well. She likes to say belly and show you her belly button. She is such a joy and we are so very blessed with how everything turned out.
God tested our faith and I thank Him for that everyday because not only did He strengthen Dan and I, but He gave us our little miracle. We have a follow up in January with her surgeon and her plastic surgeon, but there are no complications with her. Other then a fading scar on her belly you would never know anything had ever happened. If you are a mom reading this expecting a little one with the same complication or have a little one in the hospital with an omphalocele, please keep hope because things do turn out good. Gianna is proof! I was told I had the option to abort my precious little baby. We were scared, we were young, we were first time parents who had no clue about what an omphalocele was, I thank God I didn't listen to the doctor. I know so many other moms who have had similar outcomes as Gianna's. Contact me if you need support and information!
In February we closed on our first home! We are getting all settled in and love being homeowners! God had this house all picked out for us and literally plopped it in our laps. We are two very blessed people! We love the town we live in and love our little neighborhood!
Three weeks ago tomorrow we delivered our second daughter, Madelyn Faith. She has been such a joy and it's been so wonderful to experience a newborn for the first time. Gianna was in the hospital for the first eight weeks of her life, so we never really got that experience. She is a very good baby, sleeps, poops and eats! She looks identical to her sister...I spent the entire time in the hospital calling her Gianna. She is a little peanut weighing 7lbs at birth and has tons of hair! She was delivered at 36weeks via csection and spent an overnight in the NICU due to fluid in her lungs. I was looking forward to being able to experience having my baby right away, but I have to say having her shipped right off to the NICU felt completely like the normal thing to do lol. We are so happy she is healthy and we were able to get her back the very next day!
Gianna loves her sister and is very good with her. She is very gentle with her and loves to periodically come over and stroke her head, touch her nose and occasionally poke her eyes (working on that one!) She often comes over to her and says, 'awwww, baby!' They will be best friends for life!
I have found the adjustment very easy...almost too easy??? We already have our own little routine and everyone seems happy. I am still healing and it's difficult not being able to lift Gianna, but I'm getting creative with getting her around. Thank goodness she's walking!
So our journey continues with two little blessings...stay tuned for updates and pictures!
God bless,
K.E.M.
Thursday, August 23, 2012
Wednesday, October 19, 2011
10 weeks
Sorry it's been so long since I've last updated! So this is our tenth week! As I'm sure you all are well aware of now, since my last post we have final closure! She is doing just beautifully and her belly is just wonderful!
Surgery went amazingly well. I will never forget the feeling I felt after waiting for hours seeing the smiles on Dr. Buchmiller and Dr. Labow as they walked towards in the waiting room to announce that she was out of surgery and her belly was beautiful! I wanted to run up and hug them and spin them around I was so happy! Both Dan and I felt like we had just had our first child all over again, calling everyone to announce the good news. We are eternally grateful and so blessed by these two wonderful surgeons who have given our little Gianna the chance to experience life at it's fullest! They will always be in our hearts and prayers.
Her belly looks so good. Even the nurses were surprised at how good it looks compared to other omphalocele closures they've seen. She did get a bacterial infection in the incision and we've been treating that with antibiotics. It's still slightly red on the incision, but it will heal over well. She's still on one antibiotic, which they're trying to figure out how much longer she actually needs to be on it.
Her little belly button is the cutest belly button I've ever seen! I look forward to the day she discovers it and curiously sticks her finger in there and plays with it! Every kid needs a belly button! ;)
She had her little ear tags removed, which also look great! Her tongue was clipped and she seems to be doing well enough with that.
We are weaning her off of her Ativan and are almost complete with that. She is at .3 and needs to be off of it completely before we can take her home. She hasn't really shown any signs of withdrawal, which is very good. She should be off the Ativan if everything goes well by next Wednesday or Thursday. The methadone has not been weaned at all and that is something that we'll be taking home with us and weaning her off of it ourselves.
She still has her feeding tube in, but we're really working hard to get her to eat by mouth. She really started sucking on her bottle for the first time today! I was so pleased! She also ate her first solids yesterday! We gave her a couple spoonfuls of rice cereal. She didn't hate it, but I don't think she was too impressed by it either. Today I gave her carrots, which I think she enjoyed much better! I can't wait to see what she does with something sweet! She only takes a tiny bit of it, but every little bit is one step closer to her getting that feeding tube out!
As of right now we'll most likely be going home with the feeding tube. I'm being taught how to work it and I will be taught how to put one back in if she happens to pull it out. I feel comfortable enough as I've seen it plenty of times. Of course it won't be enjoyable to see her coughing and gagging and crying as I do it, but if having the feeding tube in is the only thing that's keeping us here I'll do it! Pray she starts eating by mouth better!
She's still throwing up almost everyday, but then again the poor little belly of hers is so tight from everything being put in. I think she just has way less room now that there's pressure on her belly and she just fills up a lot faster.
Hmm, I think I covered all of the medical issues. Developmentally she's doing great. I work with her everyday trying to get her to roll over on her own and strengthen her core muscles. I put her in the Bumbo and we play with her toys and read books. She also goes in the exersaucer for a little bit a couple of times a day, which I think she enjoys. Her head gets heavy after awhile and she just lays it down on the edge lol. She likes to move her arms and legs and is starting to talk a lot more now. Her hair is getting longer and I'm able to put it in a little pony on top. She probably weighs close to 17lbs now! She is just such a love!
As for our departure time....well earliest it could be end of next week or maybe the week after that. So excited to go home! It'll be different as we've been here for so long now. Gianna has spent more time here then she has at "home." In a way this has become like home lol. We'll miss all of our wonderful nurses and the doctors. They definitely have become family to us and they will all be missed!
I'll post pictures soon...my little muff muff has just woken up and is looking for mommy!
Thank you for your support and prayers! We are so blessed!
Love Dan Kaite and Muff!
Surgery went amazingly well. I will never forget the feeling I felt after waiting for hours seeing the smiles on Dr. Buchmiller and Dr. Labow as they walked towards in the waiting room to announce that she was out of surgery and her belly was beautiful! I wanted to run up and hug them and spin them around I was so happy! Both Dan and I felt like we had just had our first child all over again, calling everyone to announce the good news. We are eternally grateful and so blessed by these two wonderful surgeons who have given our little Gianna the chance to experience life at it's fullest! They will always be in our hearts and prayers.
Her belly looks so good. Even the nurses were surprised at how good it looks compared to other omphalocele closures they've seen. She did get a bacterial infection in the incision and we've been treating that with antibiotics. It's still slightly red on the incision, but it will heal over well. She's still on one antibiotic, which they're trying to figure out how much longer she actually needs to be on it.
Her little belly button is the cutest belly button I've ever seen! I look forward to the day she discovers it and curiously sticks her finger in there and plays with it! Every kid needs a belly button! ;)
She had her little ear tags removed, which also look great! Her tongue was clipped and she seems to be doing well enough with that.
We are weaning her off of her Ativan and are almost complete with that. She is at .3 and needs to be off of it completely before we can take her home. She hasn't really shown any signs of withdrawal, which is very good. She should be off the Ativan if everything goes well by next Wednesday or Thursday. The methadone has not been weaned at all and that is something that we'll be taking home with us and weaning her off of it ourselves.
She still has her feeding tube in, but we're really working hard to get her to eat by mouth. She really started sucking on her bottle for the first time today! I was so pleased! She also ate her first solids yesterday! We gave her a couple spoonfuls of rice cereal. She didn't hate it, but I don't think she was too impressed by it either. Today I gave her carrots, which I think she enjoyed much better! I can't wait to see what she does with something sweet! She only takes a tiny bit of it, but every little bit is one step closer to her getting that feeding tube out!
As of right now we'll most likely be going home with the feeding tube. I'm being taught how to work it and I will be taught how to put one back in if she happens to pull it out. I feel comfortable enough as I've seen it plenty of times. Of course it won't be enjoyable to see her coughing and gagging and crying as I do it, but if having the feeding tube in is the only thing that's keeping us here I'll do it! Pray she starts eating by mouth better!
She's still throwing up almost everyday, but then again the poor little belly of hers is so tight from everything being put in. I think she just has way less room now that there's pressure on her belly and she just fills up a lot faster.
Hmm, I think I covered all of the medical issues. Developmentally she's doing great. I work with her everyday trying to get her to roll over on her own and strengthen her core muscles. I put her in the Bumbo and we play with her toys and read books. She also goes in the exersaucer for a little bit a couple of times a day, which I think she enjoys. Her head gets heavy after awhile and she just lays it down on the edge lol. She likes to move her arms and legs and is starting to talk a lot more now. Her hair is getting longer and I'm able to put it in a little pony on top. She probably weighs close to 17lbs now! She is just such a love!
As for our departure time....well earliest it could be end of next week or maybe the week after that. So excited to go home! It'll be different as we've been here for so long now. Gianna has spent more time here then she has at "home." In a way this has become like home lol. We'll miss all of our wonderful nurses and the doctors. They definitely have become family to us and they will all be missed!
I'll post pictures soon...my little muff muff has just woken up and is looking for mommy!
Thank you for your support and prayers! We are so blessed!
Love Dan Kaite and Muff!
Tuesday, September 20, 2011
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!
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 :)
Sunday, September 4, 2011
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."
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!
Love and Prayers,
Dan, Kaite and Gianna
Monday, August 29, 2011
Day 22
Time for an update!
We're now situated on 10east in a beautiful room (you know you're at the hospital too much when you describe the rooms as beautiful lol) which overlooks part of the Boston skyline. Behind those buildings in the front is the Prudential building.
It's really nice to have a view for a change! It makes such a big difference having such nice natural lighting. The bathroom as a huge window in it as well with the same view! :) You can also see the helicopters who land on Brigham medflighting people.
So miss Gianna has been having difficulty eating her formula. She has thrown up the past six days in a row at some point or another. She has only been able to eat maybe at most 3oz (I think that was only one day) and at the end of the day she threw it all up. Today Dr. Buchmiller came up and ordered her an xray of her lower abdomen to make sure there are no blockages. We went down around 10am for her xray and are now waiting the results. She's still having bowel movements so I'm thinking that is not the case. Dr. Buchmiller thinks that it might be due to how the omphalocele had been dressed the past few days, which brings me to my next update.
Apparently the the binder (the girdle like thing that is around Gianna) was not on properly and was puting pressure on the omphalocele smooshing it down onto her skin. One flap of the binder goes across the top and one across the bottom leaving a small slit in the middle that I believe was tugging at her incision line from when she had that minor proceedure done. It's not split on the incision but it's pulling it apart. So needless to say I think that instead of moving forward this past week we've had a little bit of a set back. Dr. Buchmiller will be coming up everyday now to dress the omphalocele herself, which I'm very happy about.
She is tolerating her weans fairly well, unless her vomiting is due to her withdrawals. It's so hard to tell since there are so many little things that come into play here. They have her on methadone and ativan and have recently switched both to oral instead of iv, which is considered a wean in itself since it doesn't go directly into the bloodstream. I had never really thought of this whole weaning and withdrawal process. Unfortunately we'll have to go through it again after her surgery. My poor muff muff!
So that is all for updates on Muffin. Just continuing to get things moving with reducing the omphalocele, weaning her off her meds, and we're holding off on feeds for now. She's getting all of her nutrition via IV.
Dan and I are doing well. This past week was a much better week. I was able to get into contact with another omphalocele mom to kind of "vent" about some emotions that had been bottling up inside and it was soooo nice to have reassurance from someone who has gone through the same exact thing. Her little girl just had her final surgery! Wahoo! Thank you Brooke for your support! It has definitely put me on a better path this past week and the weeks to come!
Dan and I have been trying to get out at least once a week for a little date night. This Friday we ended up down in Brookline to get hair cuts! We then headed over to a Chinese place for some vegetarian shrimp delight and shrimp lo mien...always a treat to go out on a date and reconnect!
Sat. and Sunday were spent at the hospital with muffin. I came down with a cold Friday night so Sat. am my wonderful husband and the best daddy let me sleep in and headed over to the hospital to be with her for the morning. I think it helped to sleep it off a little. I think you just wear your system down so much being here. I'm still sniffling and sneezing, but I feel good otherwise. I joined him around noon and we were able to take Gianna in the stroller for a walk around the hospital. She looooves to go in the stroller. She sits perched upright like she's a little princess looking from side to side taking everything in. You do know how she loves to get about and see all her fans!
Yesterday we went to Mass in the morning and when the priest came out he was by himself without any altar servers. I think the storm kept a lot of people at home. So Dan got up and went out back and served for Fr. It was so cool to see him serve again...he did SUCH a good job! :) Father really appreciated his assistance! We just hung out at the hospital...everyone took naps including Dan and I...Gianna slept for 4hours! :-o Pretty relaxing day...pretty lazy actually. To end the day we took Gianna down in her stroller to the chapel where Our Lord is kept and prayed the rosary together. :) Perfect way to end the weekend!
Our room is right next to the activity room and we were able to go in there the other day and she laid down on the mat and played with a whole bunch of toys...she thinks this vacation is great! Definitely a 5 star resort! ;)
The Child Life specialist who heads up all the activities etc. informed me that every week they have a parent relaxation event...massage chairs etc. I didn't partake in last weeks as it was that Reiki....not really into that kind of stuff lol
She also told me to help myself to the craft closet...I've been doing some scrapbooking stuff, which has been so much fun! I made her a little nap sign to hang on her door and I did her foot prints and made a picture with them. :) I think she has the best door in the whole hospital! But of course...we ARE talking about Gianna!
Aunt Chrissy and Great Uncle Fred are coming for a visit today! They should be here shortly...definitely looking forward to seeing them! I should be able to take Gianna out to the garden with them :) It's a beautiful day outside...it'll be nice to give her a little sunshine and fresh air!
She just woke up from her nap...they'll be doing some blood work in a few min so I should sign off here. Hope everyone survived Irene alright...we didn't get hit that badly thank God! :) Have a wonderful Monday and I'll update as news comes in!
Thank you for your prayers and support!
Love Dan Kaite and Gianna
We're now situated on 10east in a beautiful room (you know you're at the hospital too much when you describe the rooms as beautiful lol) which overlooks part of the Boston skyline. Behind those buildings in the front is the Prudential building.
It's really nice to have a view for a change! It makes such a big difference having such nice natural lighting. The bathroom as a huge window in it as well with the same view! :) You can also see the helicopters who land on Brigham medflighting people.
So miss Gianna has been having difficulty eating her formula. She has thrown up the past six days in a row at some point or another. She has only been able to eat maybe at most 3oz (I think that was only one day) and at the end of the day she threw it all up. Today Dr. Buchmiller came up and ordered her an xray of her lower abdomen to make sure there are no blockages. We went down around 10am for her xray and are now waiting the results. She's still having bowel movements so I'm thinking that is not the case. Dr. Buchmiller thinks that it might be due to how the omphalocele had been dressed the past few days, which brings me to my next update.
Apparently the the binder (the girdle like thing that is around Gianna) was not on properly and was puting pressure on the omphalocele smooshing it down onto her skin. One flap of the binder goes across the top and one across the bottom leaving a small slit in the middle that I believe was tugging at her incision line from when she had that minor proceedure done. It's not split on the incision but it's pulling it apart. So needless to say I think that instead of moving forward this past week we've had a little bit of a set back. Dr. Buchmiller will be coming up everyday now to dress the omphalocele herself, which I'm very happy about.
She is tolerating her weans fairly well, unless her vomiting is due to her withdrawals. It's so hard to tell since there are so many little things that come into play here. They have her on methadone and ativan and have recently switched both to oral instead of iv, which is considered a wean in itself since it doesn't go directly into the bloodstream. I had never really thought of this whole weaning and withdrawal process. Unfortunately we'll have to go through it again after her surgery. My poor muff muff!
So that is all for updates on Muffin. Just continuing to get things moving with reducing the omphalocele, weaning her off her meds, and we're holding off on feeds for now. She's getting all of her nutrition via IV.
Dan and I are doing well. This past week was a much better week. I was able to get into contact with another omphalocele mom to kind of "vent" about some emotions that had been bottling up inside and it was soooo nice to have reassurance from someone who has gone through the same exact thing. Her little girl just had her final surgery! Wahoo! Thank you Brooke for your support! It has definitely put me on a better path this past week and the weeks to come!
Dan and I have been trying to get out at least once a week for a little date night. This Friday we ended up down in Brookline to get hair cuts! We then headed over to a Chinese place for some vegetarian shrimp delight and shrimp lo mien...always a treat to go out on a date and reconnect!
Sat. and Sunday were spent at the hospital with muffin. I came down with a cold Friday night so Sat. am my wonderful husband and the best daddy let me sleep in and headed over to the hospital to be with her for the morning. I think it helped to sleep it off a little. I think you just wear your system down so much being here. I'm still sniffling and sneezing, but I feel good otherwise. I joined him around noon and we were able to take Gianna in the stroller for a walk around the hospital. She looooves to go in the stroller. She sits perched upright like she's a little princess looking from side to side taking everything in. You do know how she loves to get about and see all her fans!
Our room is right next to the activity room and we were able to go in there the other day and she laid down on the mat and played with a whole bunch of toys...she thinks this vacation is great! Definitely a 5 star resort! ;)
The Child Life specialist who heads up all the activities etc. informed me that every week they have a parent relaxation event...massage chairs etc. I didn't partake in last weeks as it was that Reiki....not really into that kind of stuff lol
She also told me to help myself to the craft closet...I've been doing some scrapbooking stuff, which has been so much fun! I made her a little nap sign to hang on her door and I did her foot prints and made a picture with them. :) I think she has the best door in the whole hospital! But of course...we ARE talking about Gianna!
Aunt Chrissy and Great Uncle Fred are coming for a visit today! They should be here shortly...definitely looking forward to seeing them! I should be able to take Gianna out to the garden with them :) It's a beautiful day outside...it'll be nice to give her a little sunshine and fresh air!
She just woke up from her nap...they'll be doing some blood work in a few min so I should sign off here. Hope everyone survived Irene alright...we didn't get hit that badly thank God! :) Have a wonderful Monday and I'll update as news comes in!
Thank you for your prayers and support!
Love Dan Kaite and Gianna
Tuesday, August 23, 2011
Day 16
So this past weekend was a little trying...miss Gianna wasn't handling her weans very well and was experiencing withdrawals. She cried the majority of Friday. Dan surprised us both and only had to work a half a day and walked in unexpectedly at noon. Definitely put a smile on my face! She was extremely fussy and finally around 4:30pm she fell asleep and we took that as an opportunity to go out for a bit. I felt rather guilty leaving her knowing that if she woke up she'd be fussy, but I think we both needed a break! Being in four walls all day can really make you feel stir crazy! A little fresh air did us both good! We took the T over to government center and walked down to The Black Rose for a drink. We hadn't had anything to eat for quite awhile and seeing as how it was Friday and we don't eat meat on Friday's we really couldn't order food off of their very Irish menu. So needless to say after 12oz of my Harp UFO beer on an empty stomach I was feeling verrrrrrry relaxed and happy! We were both hungry so we decided to head over to the North End for some pizza. (I had to leave 8oz of my yummy beer behind because if I finished it Dan would have been carrying me out!) We were worried about our muffin and I was feeling particularly guilty about being out so I decided to call our nurse to see how she was doing. The nurse said she woke up and was fussy and then had a bowel movement...the first one in 12days! She said she felt sooo much better and went back to sleep and told us to please stay out because Gianna was sleeping and happy. That made my night knowing that Gianna was happy and sleeping and had pooped!
So after dinner we walked over to Mike's Pastry and got some yummy desserts and brought them over to Long Wharf and ate them as we watched the sun set. It was such an enjoyable evening and we definitely needed some time away from the hospital and time with each other. We headed back to the hospital and stayed with her for a little bit before heading back to Yawkey for the night.
Sat was a whooooole different story. She cried for 99% of the day. I thought we were going to loose our minds! I felt so bad for the poor thing who obviously was upset or uncomfortable. It was so horrible not being able to console her or do anything for her! Being her parents you feel like super heros who naturally make everything better and to not be able to do that for her was such a helpless feeling! That night they finally determined that she was withdrawing and not handling her wean off of her sedation medication well and they finally went back up on it. After a little while she calmed down and her nurse had only her for a patient that night and assured us that she would hold her all night if that's what kept her happy. So after a very long and upsetting day we left the hospital. That was a bad day and night period lol.
Sunday was a much better day and she was a lot calmer. Nana and Bumpa surprised us after church and showed up to watch her for a bit so Dan and I could go out for a walk. That was very nice! We had a nice lunch with them and came up to visit muffin for a little bit before going out for a walk. Thank you nana and bumpa!
Yesterday was a really good day and she was so happy and smiley! I went down to the center for families and picked out some new books for her to read. I also picked up The Lion the Witch and the Wadrobe after Jess made a comment on her blog about reading that with Lily I thought that it was a great idea! She loves hearing me read and most of the time it puts her to sleep! So we read, played with some of her toys, she watched her show and took a three hour nap!
Dan and I have been going down to the chapel every night before we leave the hospital and we pray our rosary down there. We found out from Fr. Bob that the blessed sacrament is down there in this little box in the wall with a sanctuary light on top of it. It's nice for us to end our day in prayer together in front of Our Lord.
Dr. Buchmiller came in this am to take a look at the omphalocele. She was so shocked at how much had gone in over the weekend. She thinks it's making great progress. We're wrapping it a little differently right now and working on weaning her off her medication. We've taken her completely off her sedative and have replaced it with Ativan, which is given directly through her IV. The morphine is slowly being weaned off since she didn't tolerate it very well over the weekend. So the plan is to get her off her meds, get her up to the floor, and continue to do reduction and compression to get it truly at skin level. At that point we will reasess. Dr. Buchmiller
She's eat more now. She's taken 2oz for me around 10am and I tried to feed her around 1:30pm and she threw it up. It was actually kind of scary. I put the bottle down and she started to look like she was going to throw up so I sat her up. She then froze like she didn't know what to do with it and started to turn blue. I had to yell out for someone to come in. This doctor came walking in and she then proceeded to throw everything up. We gave her a little o2 and she was fine after that. Not sure if it was withdrawl symptoms, her tummy is tighter now or she choked a little...too many little things going on right now. lol
Gianna was in such a good mood yesterday am when I called at 8am and she was napping the nurse told me not to rush in and to take the morning off and take a break. I had to go to the grocery store anyways so I took a nice brisk walk down into Brookline to the Stop and Shop to pick up some of our groceries. My little cart kept accumulating things until it dawned on me that I would be lugging all of this home. Needless to say I was very particular about what I put in the cart. On my way home I decided to go a different way that I've walked before a couple of times and is a lot more scenic. Weeeellll I did in fact end up taking the "scenic" route because I got a little lost. Well not lost lost but didn't end up going the way I had intended to lol. I ended up heading the right way but then ended right back to where I had started....oops. For all of you who I know are reading this worried about my safety and getting lost by myself in Boston....it's million dollar neighborhoods and I can't even tell you how many people are walking the side walks in the morning so I feel really safe walking around this area. Plus all the nurses have told me this is a great area to walk around.
I was able to take a little walk at lunch today and ate my lunch out in the Prouty Garden. Eleanor Prouty set up a trust fund to keep the garden as long as Children's Hospital is in existence. She protected it so much legally that no one will ever be allowed to build on it or remove it or move it. It has enough money in the trust fund to have two full time gardeners until like I said CHB is no longer in existence. It's always soooo beautiful and it's so delightful to go out there when I get the chance. I can't wait until Gianna can go out there with me! :)
She's been sleeping good at night too! Most of the nights she sleeps straight through they've told me! Keep it up G! She's also been taking her am and pm naps, which she is currently doing. :) I have her Jewel Lullaby cd playing and most everyone who comes in here says "It's so peaceful in here!" I like to keep some sort of music playing as I feel it makes her comfortable. I also went to CVS and picked up the JJ Bedtime lotion that she wears at home. She smells so good! The lotion they give you here doesn't have any smell to it and is so watery...she smells like my lil muff muff now. :)
So we're doing really well trying to take every day as it comes. We had a little bit of a rough weekend, but just trying to make sure we take care of ourselves as much as we're taking care of her. I have to remind myself that the nurses and doctors aren't thinking I'm a bad mom for taking some time out of the day to get out and get some fresh air or taking some time for Dan and I to both get out together. They encourage us to get out actually. I can see why they say that the divorce rate is so high for parents with children who have long stays at the hospital....not that Dan and I are having any issues, but that's because we're making sure we make time for eachother keep open communication and keep reminding ourselves that if we don't keep us strong we can't keep her strong. We're a team. We each handle things so differently and have to constantly remind ourselves that just because we each have a different approach to dealing with the stress of this all it doesn't make his way or my way bad, but we have to be respectful and understanding of eachother's way of dealing with things. This time around has been so different and so much more stressful for us. I really haven't been handling things that great and its a constant game of figuring out how to handle things...what's going to make this work. Each day gets a little easier. For anyone reading this that may be going through the same thing or may be going through this in the near future, just know that there are other people out there going through similar situations that you're a good parent and that it's ok to not be physically present at the hospital 24/7. I wish I knew some other parents going through this right now and I wish they'd tell me the same thing lol. The guilt is the worst part of this whole thing!
I hope you're all doing well! Will keep you updated!
It's actually much smaller then this...this was probably last Friday...it's much closer to the skin now.
first time i got to hold her
first time daddy gets to hold her
i got my eyes on you!
this is the life!
So after dinner we walked over to Mike's Pastry and got some yummy desserts and brought them over to Long Wharf and ate them as we watched the sun set. It was such an enjoyable evening and we definitely needed some time away from the hospital and time with each other. We headed back to the hospital and stayed with her for a little bit before heading back to Yawkey for the night.
Sat was a whooooole different story. She cried for 99% of the day. I thought we were going to loose our minds! I felt so bad for the poor thing who obviously was upset or uncomfortable. It was so horrible not being able to console her or do anything for her! Being her parents you feel like super heros who naturally make everything better and to not be able to do that for her was such a helpless feeling! That night they finally determined that she was withdrawing and not handling her wean off of her sedation medication well and they finally went back up on it. After a little while she calmed down and her nurse had only her for a patient that night and assured us that she would hold her all night if that's what kept her happy. So after a very long and upsetting day we left the hospital. That was a bad day and night period lol.
Sunday was a much better day and she was a lot calmer. Nana and Bumpa surprised us after church and showed up to watch her for a bit so Dan and I could go out for a walk. That was very nice! We had a nice lunch with them and came up to visit muffin for a little bit before going out for a walk. Thank you nana and bumpa!
Yesterday was a really good day and she was so happy and smiley! I went down to the center for families and picked out some new books for her to read. I also picked up The Lion the Witch and the Wadrobe after Jess made a comment on her blog about reading that with Lily I thought that it was a great idea! She loves hearing me read and most of the time it puts her to sleep! So we read, played with some of her toys, she watched her show and took a three hour nap!
Dan and I have been going down to the chapel every night before we leave the hospital and we pray our rosary down there. We found out from Fr. Bob that the blessed sacrament is down there in this little box in the wall with a sanctuary light on top of it. It's nice for us to end our day in prayer together in front of Our Lord.
Dr. Buchmiller came in this am to take a look at the omphalocele. She was so shocked at how much had gone in over the weekend. She thinks it's making great progress. We're wrapping it a little differently right now and working on weaning her off her medication. We've taken her completely off her sedative and have replaced it with Ativan, which is given directly through her IV. The morphine is slowly being weaned off since she didn't tolerate it very well over the weekend. So the plan is to get her off her meds, get her up to the floor, and continue to do reduction and compression to get it truly at skin level. At that point we will reasess. Dr. Buchmiller
She's eat more now. She's taken 2oz for me around 10am and I tried to feed her around 1:30pm and she threw it up. It was actually kind of scary. I put the bottle down and she started to look like she was going to throw up so I sat her up. She then froze like she didn't know what to do with it and started to turn blue. I had to yell out for someone to come in. This doctor came walking in and she then proceeded to throw everything up. We gave her a little o2 and she was fine after that. Not sure if it was withdrawl symptoms, her tummy is tighter now or she choked a little...too many little things going on right now. lol
Gianna was in such a good mood yesterday am when I called at 8am and she was napping the nurse told me not to rush in and to take the morning off and take a break. I had to go to the grocery store anyways so I took a nice brisk walk down into Brookline to the Stop and Shop to pick up some of our groceries. My little cart kept accumulating things until it dawned on me that I would be lugging all of this home. Needless to say I was very particular about what I put in the cart. On my way home I decided to go a different way that I've walked before a couple of times and is a lot more scenic. Weeeellll I did in fact end up taking the "scenic" route because I got a little lost. Well not lost lost but didn't end up going the way I had intended to lol. I ended up heading the right way but then ended right back to where I had started....oops. For all of you who I know are reading this worried about my safety and getting lost by myself in Boston....it's million dollar neighborhoods and I can't even tell you how many people are walking the side walks in the morning so I feel really safe walking around this area. Plus all the nurses have told me this is a great area to walk around.
I was able to take a little walk at lunch today and ate my lunch out in the Prouty Garden. Eleanor Prouty set up a trust fund to keep the garden as long as Children's Hospital is in existence. She protected it so much legally that no one will ever be allowed to build on it or remove it or move it. It has enough money in the trust fund to have two full time gardeners until like I said CHB is no longer in existence. It's always soooo beautiful and it's so delightful to go out there when I get the chance. I can't wait until Gianna can go out there with me! :)
She's been sleeping good at night too! Most of the nights she sleeps straight through they've told me! Keep it up G! She's also been taking her am and pm naps, which she is currently doing. :) I have her Jewel Lullaby cd playing and most everyone who comes in here says "It's so peaceful in here!" I like to keep some sort of music playing as I feel it makes her comfortable. I also went to CVS and picked up the JJ Bedtime lotion that she wears at home. She smells so good! The lotion they give you here doesn't have any smell to it and is so watery...she smells like my lil muff muff now. :)
So we're doing really well trying to take every day as it comes. We had a little bit of a rough weekend, but just trying to make sure we take care of ourselves as much as we're taking care of her. I have to remind myself that the nurses and doctors aren't thinking I'm a bad mom for taking some time out of the day to get out and get some fresh air or taking some time for Dan and I to both get out together. They encourage us to get out actually. I can see why they say that the divorce rate is so high for parents with children who have long stays at the hospital....not that Dan and I are having any issues, but that's because we're making sure we make time for eachother keep open communication and keep reminding ourselves that if we don't keep us strong we can't keep her strong. We're a team. We each handle things so differently and have to constantly remind ourselves that just because we each have a different approach to dealing with the stress of this all it doesn't make his way or my way bad, but we have to be respectful and understanding of eachother's way of dealing with things. This time around has been so different and so much more stressful for us. I really haven't been handling things that great and its a constant game of figuring out how to handle things...what's going to make this work. Each day gets a little easier. For anyone reading this that may be going through the same thing or may be going through this in the near future, just know that there are other people out there going through similar situations that you're a good parent and that it's ok to not be physically present at the hospital 24/7. I wish I knew some other parents going through this right now and I wish they'd tell me the same thing lol. The guilt is the worst part of this whole thing!
I hope you're all doing well! Will keep you updated!
It's actually much smaller then this...this was probably last Friday...it's much closer to the skin now.
first time i got to hold her 
first time daddy gets to hold her
i got my eyes on you!
this is the life!
Love and prayers to all!
Dan, Kaite and Gianna
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