Tuesday, July 29, 2008
Thank you! Thank you! Thank you!
First let my apologize for for taking so long to say this thank you. Since I am not home much I don't have access to email so I am kind of in the dark as to the day to day happenings of the blog and paypal account. I just checked my donation page and was surprised to see we have had some donations. I would really like to send a big thank you to all of you who have donated so to Pam C., Glenn M., Donna W., Bree P., and Penny C. Thank You! Thank You! Thank You!
Monday, July 28, 2008
Sunday July 27th
Today when we arrived in the NICU our primary nurse met us in the scrub room. She came to explain to us what was going on in the room next to us (which you can see into and hear from our room) and make sure that if we wanted to spend time with Kennedy we should now exactly what was happening in the next room. They were taking a baby off of life support, we both decided that we say hello and return later mainly because we knew some of the heartache but couldn't comprehend the complete grief and sorrow that would be in the NICU at that moment, I don't even want to imagine the pain that come with making the decision to take your child off of life support, watching them breathe their final breaths. My heart goes out to that family whoever they are. Everyday in the NICU you see joy and sadness, hope and disappointment. The NICU is a strange world and it has been our home for 77 days. Today made us realize just how lucky we are and how far we have come. We have skated past so many of the challenges that were possible to us. We still have our problems to over come and I am sure more will present themselves but we truly have been blessed. Each day Kennedy continues to show progress. She is up to 8CC's per hour on her feeds and is only 5 CC's away from having her TPN discontinued. Today her bloodgas was so good they took her off the NIPPV and put her on CPAP and after the switch she was doing so well they decided to take her off the Hudson prongs and try her on a Nasal Cannula again. Hopefully her blood gas will be good enough in the morning to leave her on them. Shawn and I are thankful for every small victory that brings us one step closer to coming home.
Friday July 25th
Another week has gone by and Kennedy is a little bigger and a little closer to coming home. She is up to 5 lbs. 10 ozs. and measures in at 18 inches long. She has been doing well with her feedings and on Thursday (24th) they started to up her feeds a full CC per hour rather than a half CC every other day. She now is at 7 CC's per hour continuous through her feeding tube (goes directly into her lower bowel). She is still on the NIPPV but they started lowering her settings in hopes to wean her down to the CPAP. She is getting to be a lil chunker. She has adorable little rolls on her thighs and neck!! Her eyes are still blue, but a little darker than mine. Her hair is eithier blonde or light brown depending on the light. Shawn is trying cut gas costs and miles on the car (not to mention the physical aspect) so he is only coming down Thursday through Sunday. It makes for a lonely 3 days, but it also makes me look forward to Thursdays so much more. Thanks to some very generous donations we will be able to stay in the R.M.H. through the end of August. Hopefully Kennedy will come home around then or before.
Thank you everyone for all their love and support.
Thank you everyone for all their love and support.
Sunday, July 20, 2008
Dear Carrie & family
Dear Carrie,
Even though we have never met in person, and I wouldn't know you if we bumped into each other in the street I consider you to be an angel. Tonight (Thursday) Shawn and I arrived in the NICU and were told we had mail. The 1st card I opened was from Maddy and I almost immediately started to cry. The cards from you and your family are SO SPECIAL to us!!!! I am so touched by the kindness and generosity that has been offered to my family by someone who I have never even met. I thank you so much for your thought and prayers and I can't wait to meet you when Kennedy comes home! With deepest appreciation Katie Clayton.
Shawn's Letter.
To Carrie and her whole family.
I'm just in awe of you and yours! What an awesome thing for you to do for us, and I'm not talking about the gifts (which we loved too), I'm talking about the caring words and deep thought that so obviously went into what you've done for us. I have some friends that haven't even called me once during all the events that have occurred with my daughter and to think of what you've done just leaves my jaw on the floor. When I opened those cards from your daughters and parents I just couldn't do anything other then stare blankly with my jaw hanging open. YOU ARE A WONDERFUL PERSON AND MOTHER and if my daughter turns out half as special as yours I will be a happy dad. Thank you so much for all that you've done for us in this time of need. We will never forget you & your families extreme kindness.
Even though we have never met in person, and I wouldn't know you if we bumped into each other in the street I consider you to be an angel. Tonight (Thursday) Shawn and I arrived in the NICU and were told we had mail. The 1st card I opened was from Maddy and I almost immediately started to cry. The cards from you and your family are SO SPECIAL to us!!!! I am so touched by the kindness and generosity that has been offered to my family by someone who I have never even met. I thank you so much for your thought and prayers and I can't wait to meet you when Kennedy comes home! With deepest appreciation Katie Clayton.
Shawn's Letter.
To Carrie and her whole family.
I'm just in awe of you and yours! What an awesome thing for you to do for us, and I'm not talking about the gifts (which we loved too), I'm talking about the caring words and deep thought that so obviously went into what you've done for us. I have some friends that haven't even called me once during all the events that have occurred with my daughter and to think of what you've done just leaves my jaw on the floor. When I opened those cards from your daughters and parents I just couldn't do anything other then stare blankly with my jaw hanging open. YOU ARE A WONDERFUL PERSON AND MOTHER and if my daughter turns out half as special as yours I will be a happy dad. Thank you so much for all that you've done for us in this time of need. We will never forget you & your families extreme kindness.
Saturday, July 12, 2008
Donation Button
Ok so you may have noticed we added a new page element. On the right hand side of the page is a donate button. It will take you to a paypal donation page. We are really having a hard time keeping up with the cost of gas and the Ronald McDonald house so if you would like to help by sending us a donation we would really appreciate it. Also please pass along the web page to everyone on your email list. Even one dollar will help. Thanks so much!
Some more recent photos
Mommy holding her girl. 7/7/08
Some more recent photos
Mommy holding her girl. 7/7/08
Here she is with the Hudson prongs. 6/23/08
Friday, July 11, 2008
Home
7/6/08
It's the little things you miss when your away from home. I miss my bed. I miss being able to sleep next to my husband every night. I miss being able to go to the cabinet and get the nail polish I want. Now I have to call Shawn and try to describe to him the exact color pink I am looking for among a sea of pink polish then wait for him to bring it down on his next trip. I miss having immediate access to all kinds of things like my hair straightener. I dread having to pack all this stuff up again so I make do with out a lot of it. I miss my Kitchen Aid mixer and my food processor and my blender. Don't get me wrong- I'm glad I am able to be down here close to my daughter. I get to spend 8 hours a day with her and I don't have to feel so far away from her when I go back to the apartment at night. The long term housing from the Ronald McDonald house has been a godsend but it doesn't make being away from home any easier. It's been ok till now, but today I am a little down thinking about the road ahead. I was talking with our daytime primary nurse Gail about Kennedy's feeding issues and how long she really thought it was going to be before we could bring her home. She says another 2 months. September- two more months away from home for me if we can afford it, and 4 months after Kennedy was born. When I left my house it was still spring and when I get to go home it will be fall. Crazy. Ok, well enough of my pitty party- How about what you really came for- The news on Kennedy.
Kennedy has been doing pretty well. She is low on her vent settings so she is not requiring too much extra oxygen, only 28 to 35%. (room air is 21%) She has been NPO (no food) for the last few days. She is still having feeding issues so they are trying to get the surgeons to consult on her; they being my primary nurses. Thanks to my primary making a huge fuss they are letting her start on .5cc every three hours (that's almost 8 days before she would bet a full ounce of milk) Its not much but we take what we can get around here.
7/11/08
Today Kennedy is 2 months old. 9 days from now will be her original due date. Well a lot has happened in the last 5 days. Kennedy was doing so well the put her back on a regular nasal cannula last Saturday but yesterday they had to switch her back to the Hudson prongs again since she has been having a rough couple days with her oxygen needs (around 60-70% sometimes as high as 100%). We thought that they were finally going to give into our fighting and have the surgeons do a consult on Kennedy, but they decided to try something new first and put her feeding tube down further. Now instead of being in her stomach it goes past the stomach and into her small intestine. They have her on .5cc/hour continuous feeds to see how she does with it. If that doesn't do it then I don't know whats next. They have to get this girl to eat. She is developing cholestatic jaundice from being on TPN for so long so they are giving her Phenobarbital which is made to treat people who have seizures, but its off-label uses include the treatment of cholestatic jaundice. One big milestone happened on Thursday this week. She moved from her isolette into an open crib. Miss Kennedy is a big girl now and can even be swaddled. One of the nurses taught me how so now I love to wrap her up. She is getting much bigger, but is still so tiny when you try to wrap her in a blanket. As of Tuesday night she weighed about 4 pounds 10 ounces (2100 grams).
Shawn and I would like to thank everyone who continues to help us out. We would especially like to thank my Mom and Dad who have been there for us and helped us with everything from feeding the cats to emotionally and financially helping to support us. Also since I know many of you want to help but aren't sure how, we are in need of grocery gift cards. The only stores I have found so far are Stater Brothers, Food 4 Less, and Costco. Also since it looks like Kennedy is going to be in the hospital for a while longer if you would like to help us to stay at the Ronald McDonald house a little longer you can send check made out to either me and Shawn or directly to the Ronald McDonald house. Its $15 a day and $105/week so even a check for one day would be very helpful.
Thank you again to all of our family and friends for all of your love and support!
Katie & Shawn
It's the little things you miss when your away from home. I miss my bed. I miss being able to sleep next to my husband every night. I miss being able to go to the cabinet and get the nail polish I want. Now I have to call Shawn and try to describe to him the exact color pink I am looking for among a sea of pink polish then wait for him to bring it down on his next trip. I miss having immediate access to all kinds of things like my hair straightener. I dread having to pack all this stuff up again so I make do with out a lot of it. I miss my Kitchen Aid mixer and my food processor and my blender. Don't get me wrong- I'm glad I am able to be down here close to my daughter. I get to spend 8 hours a day with her and I don't have to feel so far away from her when I go back to the apartment at night. The long term housing from the Ronald McDonald house has been a godsend but it doesn't make being away from home any easier. It's been ok till now, but today I am a little down thinking about the road ahead. I was talking with our daytime primary nurse Gail about Kennedy's feeding issues and how long she really thought it was going to be before we could bring her home. She says another 2 months. September- two more months away from home for me if we can afford it, and 4 months after Kennedy was born. When I left my house it was still spring and when I get to go home it will be fall. Crazy. Ok, well enough of my pitty party- How about what you really came for- The news on Kennedy.
Kennedy has been doing pretty well. She is low on her vent settings so she is not requiring too much extra oxygen, only 28 to 35%. (room air is 21%) She has been NPO (no food) for the last few days. She is still having feeding issues so they are trying to get the surgeons to consult on her; they being my primary nurses. Thanks to my primary making a huge fuss they are letting her start on .5cc every three hours (that's almost 8 days before she would bet a full ounce of milk) Its not much but we take what we can get around here.
7/11/08
Today Kennedy is 2 months old. 9 days from now will be her original due date. Well a lot has happened in the last 5 days. Kennedy was doing so well the put her back on a regular nasal cannula last Saturday but yesterday they had to switch her back to the Hudson prongs again since she has been having a rough couple days with her oxygen needs (around 60-70% sometimes as high as 100%). We thought that they were finally going to give into our fighting and have the surgeons do a consult on Kennedy, but they decided to try something new first and put her feeding tube down further. Now instead of being in her stomach it goes past the stomach and into her small intestine. They have her on .5cc/hour continuous feeds to see how she does with it. If that doesn't do it then I don't know whats next. They have to get this girl to eat. She is developing cholestatic jaundice from being on TPN for so long so they are giving her Phenobarbital which is made to treat people who have seizures, but its off-label uses include the treatment of cholestatic jaundice. One big milestone happened on Thursday this week. She moved from her isolette into an open crib. Miss Kennedy is a big girl now and can even be swaddled. One of the nurses taught me how so now I love to wrap her up. She is getting much bigger, but is still so tiny when you try to wrap her in a blanket. As of Tuesday night she weighed about 4 pounds 10 ounces (2100 grams).
Shawn and I would like to thank everyone who continues to help us out. We would especially like to thank my Mom and Dad who have been there for us and helped us with everything from feeding the cats to emotionally and financially helping to support us. Also since I know many of you want to help but aren't sure how, we are in need of grocery gift cards. The only stores I have found so far are Stater Brothers, Food 4 Less, and Costco. Also since it looks like Kennedy is going to be in the hospital for a while longer if you would like to help us to stay at the Ronald McDonald house a little longer you can send check made out to either me and Shawn or directly to the Ronald McDonald house. Its $15 a day and $105/week so even a check for one day would be very helpful.
Thank you again to all of our family and friends for all of your love and support!
Katie & Shawn
Thursday, July 3, 2008
Well I came home for the afternoon and finally had a chance to check my e-mail and update the blog. The last couple days Kennedy has been doing really well the past couple days. So far all her blood cultures have come back negative and she has settled into the Hudson prongs for the CPAP. They are trying some special formula to see if they can digest it better and if she does ok with that then they will put her back on the breast milk. Kennedy was doing so well that last night when Shawn and I went to visit her he was able to just relax and enjoy his daughter for the first time without having to worry about watching monitors and hearing alarms. She was alert and looking around like she could tell what was going on. It was great.
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