Kennedy took a huge step forward this week. Thursday they extubated her!!! No more breathing tube in her mouth. She started with a nasal CPAP that has the Hudson prongs, unfortunately for her and us Kennedy did not like this AT ALL. This girl fought like Rocky Balboa for two days straight, no sleep just constant irritation and desaturations of her FIO2 levels. After the two days passed and after several size changes of her nasal prongs they decided to go to a nasal Cannula which is what you see most people who use an oxygen tank wearing, small and semi unobtrusive. After a night of wearing those her CO2 levels were bad so they switched her back to the Hudsons which require Velcro and a stocking cap to stay on her face. She struggled with them but has been doing well as of Monday afternoon. They also have been switching her feeds from continuous feeds via a pump to Bolis feedings which are placed in a syringe and slowly hand squeezed into a feeding tube in her mouth. As of Monday they switched back to the continuous feeds due to a all together good report on her bowels and colon all showing signs of good working order. They were worried about Sepsis again and took several cultures wondering why her platelets are low (she received another blood transfusion) from what we can tell they are just chalking it up to prematurity and the fact that her body is focusing it's fight on the breathing. We were very worried and sad this weekend but she has come out fine and fighting as she has since day one. We will keep everyone updated with any new news as we get it.
Thank you and we appreciate all the support.
Shawn, Katie, and Kennedy.
Monday, June 30, 2008
Monday, June 23, 2008
Update
It's Monday 6.23.08 and I am home for the first time is 14 days. I had an appointment this morning at 8 so i had to make an early trip up here. I miss my house. I miss my bed. I forgot how soft it is. It's so nice to lay on your own bed after being gone for a while even if it was only for a few minutes. Part of staying at the Ronald McDonald House is having to occupy your room every night. It's not like you have a curfew or anything, but they only have so much space and they need to keep it full or else let another family have it. So my trip home is only for a few hours. I got to see my kitties which I also missed very much but all the cat hair I could do without lol. Since the blog has been so sporadic I will just update you with the latest facts instead of trying to backtrack and keep you up on what happened daily. Kennedy still has pneumonia, she is responding to the antibiotics and has had her ups and downs. She is up to 3 pounds 14 ounces and has moved up to big girl panties (regular preemie sized diapers). She seems so huge looking at her day 1 pic. She is continuing to have problems with her stomach and has been going on and off feeds. As of last night She was getting 1cc/hour continuous with a pump through a gavage tube- still no bottles till she gets extabated. The were trying to wean her ventilator settings but the pneumonia has put that on hold. It really effects her saturation levels and the amount of oxygen she needs.
As for me, I am doing good. Ronald McDonald House has long term housing and has moved me to a duplex where I have a one bedroom apartment. It's much nicer since I have my own kitchen living room and t.v. as well as a bedroom and bathroom. It's in a quiet residential area around the corner from the hospital and is only costing an extra $5/day. Although the people in the big house were friendly and the house was nice there is something about privacy that makes the situation that much more bearable. I can now say that there is now way in H-E-double hockey sticks that I could EVER be on that Big Brother show. Now that I have the apartment I feel like a I have a home to go to rather than just camping out in a hotel style bedroom. I have been spending about 6-7 hours a day at the hospital just sitting with Kennedy. Some time I read to her and sometimes I read my own book. She just finished Charlotte's Web and we are going to start Stuart Little tomorrow. I just finished The Jungle by Upton Sinclair and I am now working on Brave New World by Aldous Huxley. I been helping change diapers and learned lots of new things like how to use the device to suction her mouth out. We have had our ups and our downs but we are hangin in there and hoping for our little girl to come home on or before her due date (July 20th).
As for me, I am doing good. Ronald McDonald House has long term housing and has moved me to a duplex where I have a one bedroom apartment. It's much nicer since I have my own kitchen living room and t.v. as well as a bedroom and bathroom. It's in a quiet residential area around the corner from the hospital and is only costing an extra $5/day. Although the people in the big house were friendly and the house was nice there is something about privacy that makes the situation that much more bearable. I can now say that there is now way in H-E-double hockey sticks that I could EVER be on that Big Brother show. Now that I have the apartment I feel like a I have a home to go to rather than just camping out in a hotel style bedroom. I have been spending about 6-7 hours a day at the hospital just sitting with Kennedy. Some time I read to her and sometimes I read my own book. She just finished Charlotte's Web and we are going to start Stuart Little tomorrow. I just finished The Jungle by Upton Sinclair and I am now working on Brave New World by Aldous Huxley. I been helping change diapers and learned lots of new things like how to use the device to suction her mouth out. We have had our ups and our downs but we are hangin in there and hoping for our little girl to come home on or before her due date (July 20th).
For Your Viewing Pleasure
Daddy Holding his girl for the first time.
6.18.08
6.18.08
Daddy holding his girl for the first time
6.18.08
6.10.08
6.8.08
6.8.08
6.8.08
Sunday, June 15, 2008
Musical Hotels, Pneumonia & Father's Day
It's 6 p.m. Saturday the 14th and we just got back from the hospital. The computer at the Ronald McDonald House (hence forth know as the R.M.H.) has been broken so I am writing this on paper so that Shawn can take it home and post it using our computer.
This week has been an experience. Tuesday the R.M.H. called and said they had a room for us at an overflow hotel, so Tuesday & Wednesday night I stayed there. Thursday they had me move to another hotel. Shawn came down and we both stayed there for Thursday & Friday night. Saturday morning we got the call letting us know that a room had opened at the R.M.H. so we will be here from now until Kennedy is able to come home. It's a nice place with very kind people and they also have Sleep Number beds, so after years of wondering I finally get to find out my "number" LOL.
There has also been some excitement besides the musical hotels experience. As I wrote last weekend Kennedy gave us a scare during an E.T. tube replacement, well this week she decided to up the ante. Thursday was crazy I was holding her and during that time her saturation levels went really low but because her levels were already set at 100% oxygen we had to put her back in her isolete and try some different methods to get her stable but nothing seemed to work. it was at this time that they had to switch her to a high frequency ventilator, called an oscillator. They did lung, urine, and blood cultures and it turned out that she has Pneumonia. A manageable level is in the .oo1 to .003 range, our little girl has a level 9 (not .oo9) which needless to say is a very serious infection! It was rough being here alone and waiting for Shawn to get off work so I could let him know. They started her on some super strong antibiotics. The low point of the week was was Friday afternoon when the nurse practitioner came in to discuss the situation and tell us the course of action. Well she didn't have the most loving bedside manner and I sure could have used a little sugar-coating at that moment because she informed us that there was a possibility our little girl might not make it. To hear a doctor tell you that your child could die is surely the worse experience I have ever faced in my life. I wouldn't wish it on my worst enemy. Needless to say I lost is. I managed to keep it together until we reached the hallway where I pretty much collapsed into Shawn's arms. He had to take me into the restroom and get me to calm down so we could get out to the car and hotel. The good news is that she is doing a lot better. It will probably take a 14 day course of antibiotics before we see the pneumonia bug clear up. So far today (Saturday) she is a lot more alert and active with a much better looking chest x-ray.
Tomorrow (Father's Day) she will be 5 weeks old! It will be Shawn's 1st ever Father's Day.
Here's hoping for all the best.
Well it's Sunday and after typing all this in for Katie I've decided to write a little bit about my first Father's day. I never imagined I could love someone so much. Being a parent is something you just can't prepare for and with the situation we've found ourselves in sometimes I feel I'm in over my head. But that feeling never lasts long because Katie, Kennedy and I are going to come out of this stronger and with a different concept of family then most people ever get to experience. When we arrived at her room today Katie surprised me with a card from Kennedy that had her hand prints in it. I Loved it SOOOOOO much. Katie is such a great wife. It was hard today because they were doing some procedures, and I always have a hard time watching cause I am a big softy. But our Nurse Practitioner came in and said that things were much better and that the antibiotics have started working. Her oscillator settings were down very low and Gail our nurse was saying she was getting back to her feisty self. After I had left and driven home Katie called with great news, they put her back on the other ventilator because she didn't need the high powered one anymore. This means her lungs are working better and she is doing more of the breathing work herself. There is a minor thing with her stomach acting up again, but with preemies you take small steps forward and try not to let the setbacks phase you. I LOVE my daughter so much I could cry, and I probably will. As for now though I am smiling!
This week has been an experience. Tuesday the R.M.H. called and said they had a room for us at an overflow hotel, so Tuesday & Wednesday night I stayed there. Thursday they had me move to another hotel. Shawn came down and we both stayed there for Thursday & Friday night. Saturday morning we got the call letting us know that a room had opened at the R.M.H. so we will be here from now until Kennedy is able to come home. It's a nice place with very kind people and they also have Sleep Number beds, so after years of wondering I finally get to find out my "number" LOL.
There has also been some excitement besides the musical hotels experience. As I wrote last weekend Kennedy gave us a scare during an E.T. tube replacement, well this week she decided to up the ante. Thursday was crazy I was holding her and during that time her saturation levels went really low but because her levels were already set at 100% oxygen we had to put her back in her isolete and try some different methods to get her stable but nothing seemed to work. it was at this time that they had to switch her to a high frequency ventilator, called an oscillator. They did lung, urine, and blood cultures and it turned out that she has Pneumonia. A manageable level is in the .oo1 to .003 range, our little girl has a level 9 (not .oo9) which needless to say is a very serious infection! It was rough being here alone and waiting for Shawn to get off work so I could let him know. They started her on some super strong antibiotics. The low point of the week was was Friday afternoon when the nurse practitioner came in to discuss the situation and tell us the course of action. Well she didn't have the most loving bedside manner and I sure could have used a little sugar-coating at that moment because she informed us that there was a possibility our little girl might not make it. To hear a doctor tell you that your child could die is surely the worse experience I have ever faced in my life. I wouldn't wish it on my worst enemy. Needless to say I lost is. I managed to keep it together until we reached the hallway where I pretty much collapsed into Shawn's arms. He had to take me into the restroom and get me to calm down so we could get out to the car and hotel. The good news is that she is doing a lot better. It will probably take a 14 day course of antibiotics before we see the pneumonia bug clear up. So far today (Saturday) she is a lot more alert and active with a much better looking chest x-ray.
Tomorrow (Father's Day) she will be 5 weeks old! It will be Shawn's 1st ever Father's Day.
Here's hoping for all the best.
Well it's Sunday and after typing all this in for Katie I've decided to write a little bit about my first Father's day. I never imagined I could love someone so much. Being a parent is something you just can't prepare for and with the situation we've found ourselves in sometimes I feel I'm in over my head. But that feeling never lasts long because Katie, Kennedy and I are going to come out of this stronger and with a different concept of family then most people ever get to experience. When we arrived at her room today Katie surprised me with a card from Kennedy that had her hand prints in it. I Loved it SOOOOOO much. Katie is such a great wife. It was hard today because they were doing some procedures, and I always have a hard time watching cause I am a big softy. But our Nurse Practitioner came in and said that things were much better and that the antibiotics have started working. Her oscillator settings were down very low and Gail our nurse was saying she was getting back to her feisty self. After I had left and driven home Katie called with great news, they put her back on the other ventilator because she didn't need the high powered one anymore. This means her lungs are working better and she is doing more of the breathing work herself. There is a minor thing with her stomach acting up again, but with preemies you take small steps forward and try not to let the setbacks phase you. I LOVE my daughter so much I could cry, and I probably will. As for now though I am smiling!
Tuesday, June 10, 2008
Ronald McDonald House
Last night the Ronald McDonald house called around 7:30ish as we were on our way to the hospital. They had a room available in a motel where they have over flow stay until a room opens at the house so that's where I stayed last night. Right now I am back at my house packing bags and getting ready to head back down. They have one computer with Internet access at the house, but since I am currently staying at the hotel I am not sure how often I will be able to access it so the blog may be a little slow for I bit and lacking in pictures but I will try my best to keep everyone updated with all the most current info.
Monday, June 9, 2008
4 weeks and a scare
Well yesterday Kennedy was 4 weeks old and she gave us a bit of a scare. Around 11am we were packing stuff up and getting ready to head down to the hospital when the phone rang. Shawn answered. I could tell it was someone from the hospital. As the phone call went on- longer then the usual call confirming an appointment or asking how we are doing- I watched him. All he was saying was a lot of "uh has" and "oks". I watched his face trying to figure out who he was talking with and if everything was ok. I could tell this was one of those phone calls I had been dreading. When he hung up the phone I tried to hold back tears knowing that something wasn't right. He told me everything was ok, but he wanted me to sit down. I started sobbing. The day before her saturation levels were low so yesterday morning they decided to replace her E.T. tube (breathing tube) with a larger one. This is something normal that happens between the weights of 1100 and 1300 grams. While they were trying to place the new tube she clamped down and they couldn't get it in place right away. During all this her heart rate dropped into the mid 80's (usually around 150) and they had to do chest compressions. They stabilised her and they gave her morphine to help relax her and so she could rest. He told me all of this, but I didn't hear it, or maybe I just didn't want to hear it, but he would end up going over it with me three or four times before I could take it all in at the end of the day. We immediately got in the car and Shawn drove us down to the hospital faster than I had ever seen anyone drive in my life. The whole time I was crying, but trying to calm myself down- even though she was ok I just couldn't take it all in.
We got to the hospital and stayed with her for a few hours, but after I saw she was ok the physical exhaustion from the scare set in and I was just so tired I could barely keep my eyes open. Yesterday was supposed to be the first time that Shawn was going to hold Kennedy, but we all thought it best not to attempt it. She had been through so much and needed to rest. Her saturation levels were stable while we were there and when I called later that night they had remained stable. This morning when I called her primary nurse was back on duty which makes Shawn and I both feel so much better. Kennedy's oxygen levels were a little high, but her saturation remained stable and she was doing well. She is off feedings for the moment, but they hope to start her back soon. Her weight is up to 1345 grams which is right about 2 pounds 15 ounces- more than double her birth weight and 13.25 inches long. :0)
Today I am waiting to hear from the Ronald McDonald House to see if they have a room available for us. It is right across the street from the hospital and it would make it possible for me to spend most of my day and night at the hospital with Kennedy. When I spoke to them this morning they said that there was a waiting list and that they have to wait for people to check out and they families are chosen by distance from the hospital and diagnosis. Form the way it sounded I wont be going there today and possibly not for a while, but I am glad I am at least in line for a room since it it likely that Kennedy will be in the hospital at least till the end of July.
Hopefully today Shawn will be able to hold Kennedy and we can get some new pictures up.
We got to the hospital and stayed with her for a few hours, but after I saw she was ok the physical exhaustion from the scare set in and I was just so tired I could barely keep my eyes open. Yesterday was supposed to be the first time that Shawn was going to hold Kennedy, but we all thought it best not to attempt it. She had been through so much and needed to rest. Her saturation levels were stable while we were there and when I called later that night they had remained stable. This morning when I called her primary nurse was back on duty which makes Shawn and I both feel so much better. Kennedy's oxygen levels were a little high, but her saturation remained stable and she was doing well. She is off feedings for the moment, but they hope to start her back soon. Her weight is up to 1345 grams which is right about 2 pounds 15 ounces- more than double her birth weight and 13.25 inches long. :0)
Today I am waiting to hear from the Ronald McDonald House to see if they have a room available for us. It is right across the street from the hospital and it would make it possible for me to spend most of my day and night at the hospital with Kennedy. When I spoke to them this morning they said that there was a waiting list and that they have to wait for people to check out and they families are chosen by distance from the hospital and diagnosis. Form the way it sounded I wont be going there today and possibly not for a while, but I am glad I am at least in line for a room since it it likely that Kennedy will be in the hospital at least till the end of July.
Hopefully today Shawn will be able to hold Kennedy and we can get some new pictures up.
Thursday, June 5, 2008
I changed my first diaper!!
I changed my first diaper!! No really- the first ever.
Last night I got to change my first ever diaper and it was on my daughter. Shawn got it on camera so I will include the video. I also helped with the bath so that next time I can do it on my own. Its just a sponge bath for now, but once she no longer has an IV and all her wires hooked up then she gets a full on tub bath. So yeah it was nice to be able to do some more mommy type things. She also got her milk increased to 1cc/hour and her weight was up to 1140grams or 2 pounds 8 ounces.
Ok- the video upload is being dumb- so check back later to see if its up :0)
Also before I go- I know people want to help, but might be unsure of what they can do so if your one of those people what we really have a need for right now is gas gift cards. With gas being $4.32 currently we could really use some help in that area. Even if it's just a $5 card it would help tremendously.
Thanks everyone!
Last night I got to change my first ever diaper and it was on my daughter. Shawn got it on camera so I will include the video. I also helped with the bath so that next time I can do it on my own. Its just a sponge bath for now, but once she no longer has an IV and all her wires hooked up then she gets a full on tub bath. So yeah it was nice to be able to do some more mommy type things. She also got her milk increased to 1cc/hour and her weight was up to 1140grams or 2 pounds 8 ounces.
Ok- the video upload is being dumb- so check back later to see if its up :0)
Also before I go- I know people want to help, but might be unsure of what they can do so if your one of those people what we really have a need for right now is gas gift cards. With gas being $4.32 currently we could really use some help in that area. Even if it's just a $5 card it would help tremendously.
Thanks everyone!
Tuesday, June 3, 2008
3 weeks
Sunday marked Kennedy's 3 week birthday. We took rice krispy treats in for the nurses and also brought in the bear from the flower arrangement Dan and Elizabeth sent. We can't leave stuffed animals in the issolette, so we just brought it in for pictures so she can see how small she was compared to the bear when she grows up. She has been doing really well. First let me correct myself- I thought she was getting 1 cc of breast milk and it was actually .2 cc, but she got upped to .5 cc as of yesterday. They are also turning down her ventilator setting and trying to wean her from it so they can switch her over to a CPAP that will still give her the positive air pressure to help keep her airways open, but is a step closer to being able to breath on her own without any equipment. This will be fantastic because they can remove the breathing tube from her mouth and switch to a nasal cannula and we might actually get to see her whole face including that elusive top lip that is always covered with tape. She has been as fussy and feisty as ever and has been opening her eyes a lot but Daddy and I are still trying to see what color they are. She has also started to use a pacifier. Its preemie size, but it is still huge next to her. Gail , our primary nurse, decided to give it a try after Kennedy kept sucking loudly on her breathing tube during one of our kangarooing sessions. She loves it. As of yesterday She weighed 1100 grams which is a little over 2 pounds 7 ounces ( a full pound over her birth weight!) and she measured 14 inches long. Oh yes and her diaper fits now!
Kennedy compared to the bear
Kangaroo time
Kennedy is getting bigger!
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