Carver and Kinnick seen their pulmonologist today. Carver has been doing well on 1/8 lt oxygen during the day. However, he has been having some strange de-sats at night. He drops his sats to the low 80's for a few seconds at a time and then returns to the mid to upper 90's. He wasn't doing this when he was on 1/4 lt. She said to put him back on 1/4 lt at night for now. She really didn't want us to make any changes until after the end of April. Carver had been on 1/4 lt oxygen since we came home from the hospital in late October. He was consistently satting in the upper 90's. I believe he was ready for the change. I'm going to put him back on 1/4 lt at night for a short while and then try again. My guess is that he just needs the break at night to make the adjustment. Once he has had time to make the adjustment, I'll try again. I'm guessing a couple of weeks to a month should be plenty of time. I asked her how you know when they are ready to lower their oxygen. She said when they are consistently satting 96% +. When I asked when you should increase the oxygen, she said when they are not able to maintain 93% + consistently. Carver met those guidelines a long time ago. Outside of the few seconds a couple of times at night, he is easily meeting these sats even at 1/8 lt. I don't want to stress his body out in the middle of cold season, so I will put him on 1/4 lt at night like she suggested - I just don't plan to leave him their till the end of April. At that rate, my child will be on oxygen for a very long time. Kinnick is still doing well on 1/2 lt. We were told that we could discontinue her albuteral treatments. She'll just do pulmacort treatments twice a day. We'll have to add the albuteral back if she shows an signs of respiratory distress.
Kinnick's tummy is still not acting right. She just looks bloated all the time. She has good bowel sounds and has been having small stools, so I'm trying not to panic. I'm hoping it's just gas. She sees her doctor again next week.
My new Home Health Care agency sent a new weekend nurse this past weekend. I really liked her. She'll be a positive addition. I'm not sure who they will send for my Thursdays and Fridays. Hopefully she'll be equally as good. Their is a shortage of nurses and an even bigger shortage of good nurses. The good nurses don't have a problem getting placed and those that have them, don't give them up. Oh...and my new agency will send nurses to my home to take blood work or give shots. I'm loving this!! A nurse came last Friday to give Synagis shots. She weighted both babies. Carver is now heavier then Kinnick. He is 14 lb 9.5 oz. Kinnick is 14 lb 7 oz. Carver had been consistently a full pound behind Kinnick. He's finally starting to look like a little chunk! I'm not sure how - he's still a little pill when it comes to eating.
Monday, January 28, 2008
Friday, January 25, 2008
January 24th, 2008
Kinnick was release to come home last night around 9:30pm. She has bad diareah, but she is still on 1/2 lt oxygen satting in the 90%'s. We're happy to have her home.
What's next?
Kinnick and Carver will get their Synagis shots today to avoid RSV. My home heath nurse called in sick today, so hopefully they will be able to send someone to give the shot today. Today is the 30th day. You are supposed to get the shot within 28-30 days of the last shot. My home health care agency failed to send last months paperwork in, so I didn't receive the shots in advance. I called to have the shots sent overnight so that I would have them today. I'm still waiting on them. Drives me crazy having to double check people's work. I have so many appts for the babies, feeds, and meds. Then, there all all of the extras - like the trip to Michigan. There is so much to keep track of that it would be nice if I could rely on the health care agency and my Kid Screen case worker to do their job without me having to call and ask if something is getting done.
I still need to schedule an appt for Kinnick's BAER evaluation for her hearing. She hasn't been well long enough to get this done.
I need to get with Carver's ENT to find out the game plan for his hearing.
I'm not sure who is supposed to help me with how I'm supposed to communicate with a blind and or deaf child. So, I need to work on this.
Kinnick and Carver will lose their Medicaid cards 3/29/08. I'm working to keep Kinnick's card. She may qualify for another year due to having a G-tube, Oxygen, and suctioning. Carver will most likely lose his unless I can find someone to help me keep his. I thought with his disabilities, he would qualify. However, it seems like even though he has a disability or multiple disabilities, the state still uses the families income to determine eligibility. If anyone knows how I can keep his medical card, please let me know.
Thanks again for all of your prayers. Please pray for my patience - it's really wearing thin. I've been so frustrated with everything lately. I wear myself out trying to keep up with everything.
What's next?
Kinnick and Carver will get their Synagis shots today to avoid RSV. My home heath nurse called in sick today, so hopefully they will be able to send someone to give the shot today. Today is the 30th day. You are supposed to get the shot within 28-30 days of the last shot. My home health care agency failed to send last months paperwork in, so I didn't receive the shots in advance. I called to have the shots sent overnight so that I would have them today. I'm still waiting on them. Drives me crazy having to double check people's work. I have so many appts for the babies, feeds, and meds. Then, there all all of the extras - like the trip to Michigan. There is so much to keep track of that it would be nice if I could rely on the health care agency and my Kid Screen case worker to do their job without me having to call and ask if something is getting done.
I still need to schedule an appt for Kinnick's BAER evaluation for her hearing. She hasn't been well long enough to get this done.
I need to get with Carver's ENT to find out the game plan for his hearing.
I'm not sure who is supposed to help me with how I'm supposed to communicate with a blind and or deaf child. So, I need to work on this.
Kinnick and Carver will lose their Medicaid cards 3/29/08. I'm working to keep Kinnick's card. She may qualify for another year due to having a G-tube, Oxygen, and suctioning. Carver will most likely lose his unless I can find someone to help me keep his. I thought with his disabilities, he would qualify. However, it seems like even though he has a disability or multiple disabilities, the state still uses the families income to determine eligibility. If anyone knows how I can keep his medical card, please let me know.
Thanks again for all of your prayers. Please pray for my patience - it's really wearing thin. I've been so frustrated with everything lately. I wear myself out trying to keep up with everything.
Thursday, January 24, 2008
January 24th, 2008
We received a call around 6:30am. The Wesley Ped's doctor called to say that Kinnick was in "Respiratory distress". They said they were having to suction her so much that they couldn't even keep up. They moved her to the ICU and put her on CPAP. Unbelievable....when I left her at 10:00pm last night, she was satting 100% on 1/2 lt oxygen with absolutely no sound coming from her. Within 30 minutes of me leaving I received a call saying they were holding a feed because she had a BAD de-sat (83%). She remained on the same level of oxygen and was back to 96% within minutes. So, how does this happen? First of all, 83% when someone is taking a rectal temp isn't BAD. The 6:30am de-sats (upper 70%'s) was related to yet another rectal temp and her normally scheduled breathing treatment. They were also suctioning her at the time. I'm not sure why she was being suctioned. My guess is they heard a little mucus in her throat and thought she needed suctioned. Kinnick does a good job of coughing up the mucus in her throat, now. We haven't had to suction her since we were in Detroit. Also, I'm not sure why they continued to do rectal temps when she no longer had a temp. She was temp free at 7:00pm yesterday. Kinnick, like most chronic lung babies has no lung reserve and ALWAYS de-sats when being suctioned. So, because of this, another feed was put on hold and her stomach was blown up with air due to CPAP! When I arrived first thing in the morning, she was already on a pressure of 4 and satting at 100%. She wasn't even working to breath. They finally put her back on nasal cannula and she has done fine. She was back on 1/2 lt oxygen and satting in the 90's when I left the hospital this afternoon. The bad thing is that her stomach is full of air - making it difficult to tell if we still have stomach problems. Since they deep suctioned her several times when she was in "respiratory distress", she now has secretions. Who knows what we're going to deal with, now. She went to the Ped's unit with the best lungs she's ever had and now we've taken steps backwards. Since she now has good bowel sounds and has had a bowel movement, my doctor is going to release her to go home tonight after her 7:00pm feed. The only way she'll have to stay is if something happens due to the feed or her lung condition changes.
Wednesday, January 23, 2008
January 23, 2008
Kinnick had to return to the hospital on Tuesday due to a possible bowel obstruction. This morning she spiked a 103.9 temp. So far, the CT scan, x-rays, and blood work haven't proven that there is an obstruction. They started partial feeds tonight, but had to stop the 10:30pm feed due to some de-sats. The de-sats were in the low 80's which really isn't anything odd for Kinnick and she returned to upper 90's within minutes. I'm not alarmed by the de-sats. She still sounds great and is still on 1/2 lt oxygen. They will restart partial feeds at 1:30am. Hopefully she will get to go home tomorrow.
While my posts may offend some, I only post MY OPINIONS, feelings, and what we are going through. I try to remain as positive as possible at all times and I don't alter the truth. However, it is difficult to be positive 100% of the time when you are faced with any life altering change. My blog is not intended to debate issues with others. Everyone is entitled to their opinions. While I appreciate your suggestions, I still form my own opinions and don't need to be told what my focus should be. I think my focus is pretty clear.
While my posts may offend some, I only post MY OPINIONS, feelings, and what we are going through. I try to remain as positive as possible at all times and I don't alter the truth. However, it is difficult to be positive 100% of the time when you are faced with any life altering change. My blog is not intended to debate issues with others. Everyone is entitled to their opinions. While I appreciate your suggestions, I still form my own opinions and don't need to be told what my focus should be. I think my focus is pretty clear.
Saturday, January 19, 2008
Wesley's NICU
Someone posted a comment on my site about mud slinging Wesley's NICU. I have never had anything bad to say about Wesley's NICU. I loved my NICU nurses and Neo's. I have nothing bad to say about their NICU. I have NEVER been satisfied with Wesley's Ped's ICU. It's hard to take your child somewhere where the follow things have happened:
1.) My child once got his blood pressure taken by a cuff that had someone Else's blood on it.
2.) The Sat alarms would go off for long periods of time with no response. I stood in the room while my child turned blue and nobody bothered showing up. I was told that she was kicking her feet too much and the monitor wasn't picking up correctly. So, an assumption was being made about the reading without even checking on the child.
3.) My son was losing weight and when I checked to see how much they had fed him for the day (and this was late in the day), he had only been fed 120 cc's total for the whole day. When I asked why, I was told "they didn't have time to feed him".
4.) My daughter was put in a crib that had not been cleaned. I know this because it was the bed my son had been in 3 days earlier. His hospital sticker from another hospital was still stuck to the bed and the throw up that he spit up was still on the rail where it was before his dismissal.
5.) They continue to put my daughter's bouncy seat on the hospital floor, then the put it on her clean linens, then they lay her on the linens without changing them.
6.) When things fall on the floor, they just pick them up and throw them back in the bed or on a shelf to be used later.
7.) They left soiled linens at the foot of my childs bed (in her bed) for the entire day. The next day, I threw the soiled linens under the bed on the shelf. They remained there until I finally asked the nurse to dispose of them.
The unit feels and looks filthy all of the time.
1.) My child once got his blood pressure taken by a cuff that had someone Else's blood on it.
2.) The Sat alarms would go off for long periods of time with no response. I stood in the room while my child turned blue and nobody bothered showing up. I was told that she was kicking her feet too much and the monitor wasn't picking up correctly. So, an assumption was being made about the reading without even checking on the child.
3.) My son was losing weight and when I checked to see how much they had fed him for the day (and this was late in the day), he had only been fed 120 cc's total for the whole day. When I asked why, I was told "they didn't have time to feed him".
4.) My daughter was put in a crib that had not been cleaned. I know this because it was the bed my son had been in 3 days earlier. His hospital sticker from another hospital was still stuck to the bed and the throw up that he spit up was still on the rail where it was before his dismissal.
5.) They continue to put my daughter's bouncy seat on the hospital floor, then the put it on her clean linens, then they lay her on the linens without changing them.
6.) When things fall on the floor, they just pick them up and throw them back in the bed or on a shelf to be used later.
7.) They left soiled linens at the foot of my childs bed (in her bed) for the entire day. The next day, I threw the soiled linens under the bed on the shelf. They remained there until I finally asked the nurse to dispose of them.
The unit feels and looks filthy all of the time.
January 19th, 2008
Kinnick has made it all day on 1/2 lt and still satting upper 90's to 100%. I put Carver on 1/8 lt and he has also satted upper 90's to 100%.
My home health care agency has been a bit disappointing. I have really only had 1 nurse that is reliable, faithful, loving, and loyal. I'm not sure what I expected. I thought that since we qualified for 16hr/day of care that an agency would take complete advantage of the hours and send as much help as possible. It's all paid by medicaid. Instead, I'm told there is a nursing shortage and the nurses make all the calls on when they will or will not work. Also, they are quick to let me know that they get paid the same whether they watch my two babies or sit all day in front of a TV and watch 1 child that is pretty self sufficient. So, if they come to my house and have to work to earn their paycheck, many say it's too much and don't want to come back. I'm not asking them to do anything special. I don't criticize. I rarely leave the house, so I'm here all day helping them. We live in a nice neighborhood and have a new home that we keep clean and comfortable. They are having a hard time with the demands of two babies. The demands that I'm talking about are the same demands a normal healthy baby(ies) would have. Out of 100+ hrs that we get a week, we were given 9 hrs of help the week before we went to Detroit. For a business that is like throwing money out the window. The hours are there and just need filled. It's crazy! So, I've hired a second agency. The hope is that if one agency can't fill my hours, the other can. We'll see how it goes.
Kinnick has really had a hard time with her G-tube (mic-key button). She got her mic-key button in October. It is now January and it has been pulled out 4 times. Twice in the hospital and twice at home. Kinnick pulled it out both times in the hospital after I told the nurses to take the extension off after every feed and to hide the extension while she was feeding. They never listened. Each time, the extension was attached and the feed was complete. At home, it is accidentally being pulled out by my nurse. Unfortunately, my crib rail does not come down. My nurse isn't very tall and when she lifts kinnick over the rail to put her in the crib, the extension gets caught between the nurse and the rail and gets pulled out. I know my nurse is always careful, but it still happens. It just stinks for poor Kinnick. Her G-tube leaks all of the time and causes her a lot of discomfort. I can't wait until she is able to take feeds orally so we can get rid of it. She was doing really good before her eye surgery. She was taking an ounce consistently at each daytime feed. Since surgery, she has refused her bottle. We'll have to start over again. I love my nurse at home and know she feels terrible each time this happens. It's just something that happens with these mic-key buttons.
Kinnick's eyes look really good. We won't know how successful the surgeries were for at least another 3 months.
Oh, and Carver found his thumb this week. Hopefully, this will help when he is crabby. He still isn't able to hold his pacifier in his mouth.
My home health care agency has been a bit disappointing. I have really only had 1 nurse that is reliable, faithful, loving, and loyal. I'm not sure what I expected. I thought that since we qualified for 16hr/day of care that an agency would take complete advantage of the hours and send as much help as possible. It's all paid by medicaid. Instead, I'm told there is a nursing shortage and the nurses make all the calls on when they will or will not work. Also, they are quick to let me know that they get paid the same whether they watch my two babies or sit all day in front of a TV and watch 1 child that is pretty self sufficient. So, if they come to my house and have to work to earn their paycheck, many say it's too much and don't want to come back. I'm not asking them to do anything special. I don't criticize. I rarely leave the house, so I'm here all day helping them. We live in a nice neighborhood and have a new home that we keep clean and comfortable. They are having a hard time with the demands of two babies. The demands that I'm talking about are the same demands a normal healthy baby(ies) would have. Out of 100+ hrs that we get a week, we were given 9 hrs of help the week before we went to Detroit. For a business that is like throwing money out the window. The hours are there and just need filled. It's crazy! So, I've hired a second agency. The hope is that if one agency can't fill my hours, the other can. We'll see how it goes.
Kinnick has really had a hard time with her G-tube (mic-key button). She got her mic-key button in October. It is now January and it has been pulled out 4 times. Twice in the hospital and twice at home. Kinnick pulled it out both times in the hospital after I told the nurses to take the extension off after every feed and to hide the extension while she was feeding. They never listened. Each time, the extension was attached and the feed was complete. At home, it is accidentally being pulled out by my nurse. Unfortunately, my crib rail does not come down. My nurse isn't very tall and when she lifts kinnick over the rail to put her in the crib, the extension gets caught between the nurse and the rail and gets pulled out. I know my nurse is always careful, but it still happens. It just stinks for poor Kinnick. Her G-tube leaks all of the time and causes her a lot of discomfort. I can't wait until she is able to take feeds orally so we can get rid of it. She was doing really good before her eye surgery. She was taking an ounce consistently at each daytime feed. Since surgery, she has refused her bottle. We'll have to start over again. I love my nurse at home and know she feels terrible each time this happens. It's just something that happens with these mic-key buttons.
Kinnick's eyes look really good. We won't know how successful the surgeries were for at least another 3 months.
Oh, and Carver found his thumb this week. Hopefully, this will help when he is crabby. He still isn't able to hold his pacifier in his mouth.
Friday, January 18, 2008
January 18th, 2008
Sorry that I wasn't able to post yesterday. The Internet at the hotel was down all day. The doctor came to see Kinnick yesterday and released her to go home. So, we are now back home in Wichita. We got back around 5:30pm. The NICU nurse that I mentioned before (Sue) came to the hotel to help me pack things up. She followed me to the car rental place so I could return my car and then helped carry everything in to the hospital. She's such an angel. We'll have to return to Detroit again in about 3 months.
Kinnick and Carver are both worn out tonight. They're both already sleeping for the night. I'm worn out, too. It will be nice to relax. These trips really stress me out.
Thank you for your prayers. We appreciate all of your love and support.
Kinnick and Carver are both worn out tonight. They're both already sleeping for the night. I'm worn out, too. It will be nice to relax. These trips really stress me out.
Thank you for your prayers. We appreciate all of your love and support.
Wednesday, January 16, 2008
January 16th, 2008
Kinnick is doing fabulous today. She has been saturating at 100% on 1/2 lt oxygen nearly all day. She's never done this before. I wouldn't be surprised if she is on a 1/4 lt oxygen tomorrow. While she was on the ironing board (face down), her cannula was above her head (like sunglasses) and she was saturating 100%. This must have gone on for at least 3 hours. Once she was turned over on her back for a diaper changing later, she wasn't able to saturate without the oxygen. Obviously, she has some sort of blockage or narrowing that is opened up while in this position. She still coughs up a lot of mucus, but she looks and sounds better then ever.
Carver has also been doing really good with his oxygen. He's been saturating 100% on 1/4 lt. I have no idea what's going on with their oxygen. I just hope things look this good when we get home. Maybe we can get their oxygen needs down once we are home.
Here are some pics of my little fly.... She hates the shields. She works all day taking them off, and is getting really good at it. With everything she's been through, she's still happy.
The hospital has decided to keep Kinnick in the hospital until we are able to fly back to Wichita. Coordinating all of the equipment to my hotel and transporting her and Carver back-n-forth to see the doctor is more of a hazard then just keeping her in the hospital. Carver has so few needs that it is easy to bring him to/from the hotel.
The hospital moved a small crib into Kinnick's private room so that Carver can sleep while we are visiting. When we first arrived at the hospital, Kinnick and Carver shared a larger room that held 2 beds. Once Carver was dismissed, they moved Kinnick to a private room and put this small crib in the room for Carver. The Ped's floor is completely full right now, so we are fortunate that the hospital is letting us stay. We are also fortunate to have a private room. Otherwise, we would be sharing the room with another family.
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Here is a picture of Carver's little crib. He's pretty much head to foot in this crib - no extra room. However, it makes a big difference when it comes to nap time and diaper changes.
Tuesday, January 15, 2008
January 15th, 2008
My heart goes out to all of the families who have lost a micro preemie. I can't imagine the pain of losing a child.
Having micro preemies is like being on a roller coaster ride that never seems to end. One minute things look great and the next minute things are falling apart. It all happens so quickly. We make split second decisions without truly understanding what these decisions will mean or what direction they will take us in the future. In the very beginning, it's all about making it to the next day. Then it's all about making it home from the NICU. Once we are home, we spend many days/nights worrying about whether we are doing things right. It also gives us time to reflect on where we have been and the decisions we have made. I have made many split second decisions and I can't say that I would have done anything different if given more time to make the decisions. I can also say that even with all of the pain I've been through, am going through, and will continue going through, I thank God for Kinnick and Carver and this experience. God has opened my eyes to a whole new world that I never really thought about. I have met so many wonderful people because of Kinnick and Carver. I look at a lot of things differently, now. We didn't ask for these babies. They were gifts from God. It's hard not to think about all of the pain associated with micro preemies, but the fact that God chose us to have and to take care of these micro preemies is a huge compliment.
Having micro preemies is like being on a roller coaster ride that never seems to end. One minute things look great and the next minute things are falling apart. It all happens so quickly. We make split second decisions without truly understanding what these decisions will mean or what direction they will take us in the future. In the very beginning, it's all about making it to the next day. Then it's all about making it home from the NICU. Once we are home, we spend many days/nights worrying about whether we are doing things right. It also gives us time to reflect on where we have been and the decisions we have made. I have made many split second decisions and I can't say that I would have done anything different if given more time to make the decisions. I can also say that even with all of the pain I've been through, am going through, and will continue going through, I thank God for Kinnick and Carver and this experience. God has opened my eyes to a whole new world that I never really thought about. I have met so many wonderful people because of Kinnick and Carver. I look at a lot of things differently, now. We didn't ask for these babies. They were gifts from God. It's hard not to think about all of the pain associated with micro preemies, but the fact that God chose us to have and to take care of these micro preemies is a huge compliment.
Monday, January 14, 2008
January 14th, 2008
The power of prayer is amazing. Thank you all for your prayers. Through God's grace, Kinnick's lens was spared. She did not even need the silicone sponge or the band. What appeared to be a tear in the retina earlier was actually a couple of unique folds in a "T" shape (kinda bunched up). These folds along with a ring of scar tissue had caused the retina to detach. Dr. Trese was able to dissect (for lack of a better word) the folds and remove the scar tissue. After doing this, the retina appears to be trying to re-attach. He feels confident that the retina will attach itself. Best case for her vision will still be no better then 20/400 vision, but she did not suffer the pain of the long procedure or the pressure associated with the sponge and band. She was off the ventilator in less then 30 minutes, again. In addition, sparing the lens will give her the best sight possible. The reason her vision will be 20/400 (could be worse or could be better - you never know) is because the center of the retina has been detached. Once this happens, my understanding is that most vision will be lost. The brain loses its opportunity to work with the eye. It is still possible that the brain will work with the eye and we'll receive better vision. Kinnick has been a real trooper.
The bad news is that we can't return home tomorrow. They put an air pocket in her eye to hold everything in place. She can not fly until the air pocket has dissolved. This could take up to 1 week. Dr. Trese is going to look at her on Friday. If the air pocket is mostly gone, we will be able to leave Friday evening or Saturday morning. I'm not sure when the hospital will release Kinnick from the hospital to my hotel. It could be as early as Wednesday. Ugh. Not sure how I'm going to handle this one. The single stroller that I'm using will not accommodate. So, my job over the next couple of days will be to figure this one out. The fun never ends.
This is a picture of Kinnick after surgery. She is face down on a small ironing board with a hole cut out for her face. She will have to stay this way for 24 hours to allow the air pocket to set everything in place. After 24 hours, she will be placed in a bouncy seat. She actually likes it - or at least for now.
This is a picture of Dr. Trese...
The bad news is that we can't return home tomorrow. They put an air pocket in her eye to hold everything in place. She can not fly until the air pocket has dissolved. This could take up to 1 week. Dr. Trese is going to look at her on Friday. If the air pocket is mostly gone, we will be able to leave Friday evening or Saturday morning. I'm not sure when the hospital will release Kinnick from the hospital to my hotel. It could be as early as Wednesday. Ugh. Not sure how I'm going to handle this one. The single stroller that I'm using will not accommodate. So, my job over the next couple of days will be to figure this one out. The fun never ends.
This is a picture of Kinnick after surgery. She is face down on a small ironing board with a hole cut out for her face. She will have to stay this way for 24 hours to allow the air pocket to set everything in place. After 24 hours, she will be placed in a bouncy seat. She actually likes it - or at least for now.
This is a picture of Dr. Trese...
Sunday, January 13, 2008
January 13th, 2008
Tomorrow is the big day. Kinnick's surgery is scheduled for 9:15am. I am sad that I can not be with her pre-op. Since Carver has been released, I have to stay with him 24/7. He is not allowed in the pre-op area. Carver and I will wait in the waiting room for the doctor to give us the update after surgery. The surgery could take 3 hours. Please pray that the doctor is able to spare her lens and there is no need for the silicone band. If he has less to do, the surgery won't take as long (being on the ventilator so long causes Kinnick additional lung/breathing (mucus) problems). If he is able to spare the lens, this will help her vision. If he is able to avoid the band, this will help reduce some of the risk of the eye not growing properly. Please pray that she doesn't suffer a lot of pain, that her lungs don't suffer, and that she recovers quickly.
I thank God for my beautiful babies. He has been so good to us. He is truly an awesome God.
I'm going to go kiss my little miracle, Carver. He looks so cute!
Here is a picture of Carver in the bath tub the day before the trip to Detroit. He is no longer a 1 lb 7 oz baby!
Love,
Shanon
I thank God for my beautiful babies. He has been so good to us. He is truly an awesome God.
I'm going to go kiss my little miracle, Carver. He looks so cute!
Here is a picture of Carver in the bath tub the day before the trip to Detroit. He is no longer a 1 lb 7 oz baby!
Love,
Shanon
Saturday, January 12, 2008
January 12th, 2008
My favorite MI NICU nurse, Sue, came to my rescue again. She brought a pack-n-play to my hotel room for Carver to sleep in. She has been my guardian angel. The first time I came to MI, she was the first person that went out of her way to be nice to me. I took a taxi every day to my hotel. She offered to give me rides on the days she worked - even though her work told her never to do this for people. She went to dinner with me several times, so that I wasn't always eating alone. She was good to both of my babies their entire stay. She took care of them every shift that they would let her. She sends cards to my babies for every holiday. She offered to come to the hospital to watch the babies while I return my rental car on Tuesday or to just watch Carver while I get out. She's just been a wonderful friend. I am so glad that I met her. She's such a good hearted person. William Beaumont Hospital is just so different from our hospital in Wichita. I really haven't met a nurse yet that doesn't act like they like their job. They are always cheerful and willing to help. I don't know where they find these people. I wish some of them would go to work for Wesley's Peds ICU and floor.
Carver didn't seem to have a problem sleeping with mom. Below is a picture of him all snuggled in. He looks pretty content. I don't think he even moved an inch all night. I had to wake him up at 7:30am.
Carver didn't seem to have a problem sleeping with mom. Below is a picture of him all snuggled in. He looks pretty content. I don't think he even moved an inch all night. I had to wake him up at 7:30am.
Kinnick has been getting in trouble for knocking her cannula out and her eye patch. They put "naughty" braces on her. This seems to take care of the problem. Poor girl. Guess we have to do what it takes to allow those eyes to heal.
Below are a couple of pictures from our flight. you're seeing the majority of the plane. I am seated in front of Kinnick at the back of the plane.
Kinnick
Carver
Friday, January 11, 2008
January 11th, 2008
Carver has been dismissed from the hospital and is now in my hotel room. The hospital gave me a brand new stroller to use (right out of the box). They gave me formula, bottles, diapers and wipes. They arranged for delivery of oxygen to my hotel and had an oximeter and portable oxygen brought to the hospital room. The car that I have rented came right off the car lot - 13 miles on it. How nice is that? I don't have to worry about any germs in the car or someone's leftover smoke. They even upgraded my car to a full sized - 4 door at no extra cost. I don't have a baby bed for Carver in my room. The laundry basket wasn't big enough - he's over 14 lbs, now. ha! Anyway, I made him a little nest in my bed and he'll just have to snuggle with me for the next few nights. He's such a good baby. He's slept through the night since he came home from the hospital. He goes to bed around 7:00pm and wakes up around 6:00am. The only time I have to get up is when he knocks his cannula out and de-sats. However, he seems to do pretty good for quite a while after knocking it out. I'm sure he'll be off oxygen sometime this summer for sure if not earlier.
Kinnick is doing good after her surgery. She's been acting like she has a little cold every since she got her RSV shot. The hospital did a CBC yesterday and her white cell count was up. However, today they did another CBC and her white count had come back down. So, maybe she's getting better. She is scheduled for her big eye surgery Monday at 9:30am. Dr. Trese is going to do the surgery. It seems like he always does the big surgeries. He is the top guy in the country - possibly the world. So, we're in good hands. He perfected the surgery that he is doing and trains others all over the world. I'm told that they are going to try to release us to go home the next day if all goes well. Otherwise, it is possible that Kinnick will be released to my hotel and we'll have to go into the office for a check-up within a week. That would not be fun. I guess we'll deal with that when the time comes.
We're doing good and looking forward to going home. Hopefully we'll be home on Tuesday.
Neva, I just want to thank you for all of your help with my insurance questions and the child care question. Thank you!
Thank you for all of your prayers.
Kinnick is doing good after her surgery. She's been acting like she has a little cold every since she got her RSV shot. The hospital did a CBC yesterday and her white cell count was up. However, today they did another CBC and her white count had come back down. So, maybe she's getting better. She is scheduled for her big eye surgery Monday at 9:30am. Dr. Trese is going to do the surgery. It seems like he always does the big surgeries. He is the top guy in the country - possibly the world. So, we're in good hands. He perfected the surgery that he is doing and trains others all over the world. I'm told that they are going to try to release us to go home the next day if all goes well. Otherwise, it is possible that Kinnick will be released to my hotel and we'll have to go into the office for a check-up within a week. That would not be fun. I guess we'll deal with that when the time comes.
We're doing good and looking forward to going home. Hopefully we'll be home on Tuesday.
Neva, I just want to thank you for all of your help with my insurance questions and the child care question. Thank you!
Thank you for all of your prayers.
Thursday, January 10, 2008
January 10th, 2008
Carver is going to be dismissed from the hospital tomorrow since he will not require any surgery at this time. The hospital has really tried to accommodate me. They offered to let Carver stay in his bed and use their oxygen. They even offered to lend me a small oximeter. However, this would tie me to the room. I would not be able to leave the room. I'm not sure how I would manage meals, showers, etc.... I only brought 4 pairs of clothes (since I have a washer/dryer at my hotel), so not sure how I would even wash clothes. The hospital staff could not care for him due to liability reasons. The insurance company won't allow him to stay since there is no need for him to be there. So, the hospital is going to get me oxygen and an oximeter - rentals. My other problems... I was only allowed 2 bags for both babies and myself combined. The plan was to keep the babies in the hospital till they went home, so all I have is a car seat. I don't even have a base for the car seat. I don't have a stroller, bed, formula, meds, or diapers. I have a couple of burp rags, and a couple of bottles. The head of the Peds floor said that she thinks she has a stroller in storage that she can lend me. So, tomorrow will be interesting. Right now, I'm sizing up the laundry basket in my hotel room - perhaps it will work for a bed ;O). Anyway, I'm sure we'll manage. God always seems to take care of us. As long as I have a stroller, oxygen, and an oximeter I think we'll do fine. I just hate the thought of hauling him all over the place and in/out of the peds floor.
Wednesday, January 9, 2008
January 9th, 2008
Eyes update:
We made it safely to the hospital last night around 8:30pm.
Both babies recovered quickly from surgery today. They were off their ventilators in under 30 minutes. Carver was scheduled for surgery this morning at 9:30am. We received good news on Carver. He doesn't need any more surgery at this time. The right retina is completely attached. There is very little scarring. I'm told to expect best case vision in this eye of 20/50 corrected. The left retina is attached at the edges, but not in the center. There is still fluid under the retina causing the center to be detached. The tear appears to still be sealed. The sponge is still in place and doing its job. As Carver grows, the sponge will push more against the back of eye wall causing the retina to flatten more. This should help the retina attach later. However, this could take a long time. In the mean time, the brain favors the right eye and is doing little to none with the left eye. The eye does have some vision. He will be able to see light, dark, colors and objects. However, the vision will lack clarity. His best case vision in this eye will be 20/400 corrected. This is classified as legally blind. But, it only takes one good eye to see. So, we're in good shape.
Kinnick was scheduled for surgery this morning at 11:30am. She got some good news and some bad news. The good news is that the retina on the left is 50-60% attached. The remainder of the retina is folded (dry fold). They can not "unfold" the retina. However, the 50-60% that is attached will give her vision. Not good vision, but vision. At best case 20/400 vision like Carver's left eye. Prior to surgery, she wasn't seeing out of the left eye because a membrane formed under the iris. They removed the membrane today, so this should now give her better vision in this eye. The bad news is that the retina on the right will require the same procedure that Carver went through last September. The right retina is detached and torn. The surgery will involve removing the vitreous gel (fluid that makes up 2/3 of the eye) and replacing it with silicone oil. To do this, they have to take blood from mom or dad (requires a lot of blood - the baby doesn't have enough to give for the surgery). They wash the blood for specific enzymes (this takes 3 days). Once the blood is washed, they inject the enzymes into the eye. This does something to help separate the vitreous gel from the retina. In babies, the vitreous gel is the consistency of egg whites - very sticky. It's difficult to remove the gel without tearing or damaging the retina. They will also stitch a silicone sponge to the back of her eye. The sponge and the silicone oil will "sandwich" the retina. This will help the retina flatten allowing it to heal and re-attach. Then an encircling silicone band will be sewn around the circumference of her eye. This will help hold everything together. This is not a fun procedure. Carver suffered a great deal when he had this procedure done. This surgery will take place Monday. The date had to be moved due to the time it takes to wash the blood. Please pray that she doesn't suffer much, the surgery goes well, and she recovers quickly. It's going to break my heart to see her suffer to recover from this surgery. She has been through so much. Her best case vision after surgery will be 20/400 in this eye. I know this doesn't sound like much, but this will allow her to move about without running into things.
What is the meaning of 20/50, and 20/400 vision? If your vision is 20/50, it means that someone with normal vision can see an object 50 feet away, while you have to move up to 20 feet from the object in order to see it. If your vision is 20/400, a person with normal vision can see an object 400 feet away, while you have to move up to 20 feet away from the object in order to see it. 20/400 vision is much like an unfocused camera - very blurry. Most babies start out with 20/400 vision. They gain full vision by the time they are 6 months old.
There have been so many decisions to be made throughout Kinnick and Carver's lives. Most of the decisions are very painful and you never know for sure if you've made the right choice. In addition, many of the decisions have to be made within minutes. It is difficult to tell if decisions are made out of selfishness or what is truly right for the babies. I always try to put myself in my children's shoes and ask myself what I would want done. I pray that I'm making all the right choices for my babies. It has been very difficult.
We made it safely to the hospital last night around 8:30pm.
Both babies recovered quickly from surgery today. They were off their ventilators in under 30 minutes. Carver was scheduled for surgery this morning at 9:30am. We received good news on Carver. He doesn't need any more surgery at this time. The right retina is completely attached. There is very little scarring. I'm told to expect best case vision in this eye of 20/50 corrected. The left retina is attached at the edges, but not in the center. There is still fluid under the retina causing the center to be detached. The tear appears to still be sealed. The sponge is still in place and doing its job. As Carver grows, the sponge will push more against the back of eye wall causing the retina to flatten more. This should help the retina attach later. However, this could take a long time. In the mean time, the brain favors the right eye and is doing little to none with the left eye. The eye does have some vision. He will be able to see light, dark, colors and objects. However, the vision will lack clarity. His best case vision in this eye will be 20/400 corrected. This is classified as legally blind. But, it only takes one good eye to see. So, we're in good shape.
Kinnick was scheduled for surgery this morning at 11:30am. She got some good news and some bad news. The good news is that the retina on the left is 50-60% attached. The remainder of the retina is folded (dry fold). They can not "unfold" the retina. However, the 50-60% that is attached will give her vision. Not good vision, but vision. At best case 20/400 vision like Carver's left eye. Prior to surgery, she wasn't seeing out of the left eye because a membrane formed under the iris. They removed the membrane today, so this should now give her better vision in this eye. The bad news is that the retina on the right will require the same procedure that Carver went through last September. The right retina is detached and torn. The surgery will involve removing the vitreous gel (fluid that makes up 2/3 of the eye) and replacing it with silicone oil. To do this, they have to take blood from mom or dad (requires a lot of blood - the baby doesn't have enough to give for the surgery). They wash the blood for specific enzymes (this takes 3 days). Once the blood is washed, they inject the enzymes into the eye. This does something to help separate the vitreous gel from the retina. In babies, the vitreous gel is the consistency of egg whites - very sticky. It's difficult to remove the gel without tearing or damaging the retina. They will also stitch a silicone sponge to the back of her eye. The sponge and the silicone oil will "sandwich" the retina. This will help the retina flatten allowing it to heal and re-attach. Then an encircling silicone band will be sewn around the circumference of her eye. This will help hold everything together. This is not a fun procedure. Carver suffered a great deal when he had this procedure done. This surgery will take place Monday. The date had to be moved due to the time it takes to wash the blood. Please pray that she doesn't suffer much, the surgery goes well, and she recovers quickly. It's going to break my heart to see her suffer to recover from this surgery. She has been through so much. Her best case vision after surgery will be 20/400 in this eye. I know this doesn't sound like much, but this will allow her to move about without running into things.
What is the meaning of 20/50, and 20/400 vision? If your vision is 20/50, it means that someone with normal vision can see an object 50 feet away, while you have to move up to 20 feet from the object in order to see it. If your vision is 20/400, a person with normal vision can see an object 400 feet away, while you have to move up to 20 feet away from the object in order to see it. 20/400 vision is much like an unfocused camera - very blurry. Most babies start out with 20/400 vision. They gain full vision by the time they are 6 months old.
There have been so many decisions to be made throughout Kinnick and Carver's lives. Most of the decisions are very painful and you never know for sure if you've made the right choice. In addition, many of the decisions have to be made within minutes. It is difficult to tell if decisions are made out of selfishness or what is truly right for the babies. I always try to put myself in my children's shoes and ask myself what I would want done. I pray that I'm making all the right choices for my babies. It has been very difficult.
Monday, January 7, 2008
January 7th, 2008
Well, we are set to fly to Detroit. We will leave ICT at 12:30 and should be there by 4:00pm. Both babies are doing well. Carver is up to 13 lb 7 oz and Kinnick is up to 14 lbs. They're really starting to look chunky.
We're busy packing for our flight. We're allowed 2 bags for the 3 of us. That will be fun! I'm hoping we're there 1 week, but could be as long as 3 months. We were approved for Medical transport and inpatient hospitalization. I was also approved to receive reimbursement for my hotel and meal expenses.
Please pray that they are able to save Kinnick and Carver's vision. I know we've asked for a lot of prayers, but it does mean a lot to us. Thank you all! God has worked many miracles for these babies and many others we know.
Thank you,
Shanon
We're busy packing for our flight. We're allowed 2 bags for the 3 of us. That will be fun! I'm hoping we're there 1 week, but could be as long as 3 months. We were approved for Medical transport and inpatient hospitalization. I was also approved to receive reimbursement for my hotel and meal expenses.
Please pray that they are able to save Kinnick and Carver's vision. I know we've asked for a lot of prayers, but it does mean a lot to us. Thank you all! God has worked many miracles for these babies and many others we know.
Thank you,
Shanon
Sunday, January 6, 2008
Friday, January 4, 2008
January 4th, 2008
A whole new year. Last year was quite a year....
In 2006, we decided to build a new home. Our family had grown to 7 when Hayden was born September 21, 2006. We had a nice size home, but really needed at least one more bedroom and more family space. In March of 2006, we picked a builder, floor plan and a sub-division where we planned to live. We finalized our plans in July, 2006 and the build project started in August, 2006. Our house was due to complete March, 2007. We put our existing house on the market November, 2006. We were told that due to the time of year, it could take 6 months to get our house sold. The house sold the first weekend it was on the market. So, we quickly moved our family of 7 into a small 3 bedroom duplex and would have to stay there until our new home was finished. A few days before we closed on the sale of our existing home, we found out that we were going to have another baby. This was a big surprise since we were taking birth control. I was taking a birth control that you take 3 months at a time before you have a period. So, I had no idea how far along I was. A sonogram was done to confirm a due date. During the sonogram, we learned that not only were we having 1 baby, but we were having 2 babies. Wow, the surprises didn't seem to end. I am an identical twin, but never dreamed that I would have a set of twins. I'm told that the older you get, the more likely you are to have twins. I'll be 40 in May, so guess they're trying to tell me 40 is old. I thought I was still pretty young :o). Anyway, the build project was very time consuming and stressful. We finally set a close date of March 30th. We were excited to finally have a date to move into our new home. We were going to hold off buying baby items until we were in our new home. We didn't want to store anything extra in our small duplex. We had a garage sale prior to putting our house on the market to get rid of all of our baby stuff - since we were done having children. This took place just a couple of weeks before we found out we were having another baby(ies). The rest of our equipment was donated to our daycare center and people we know. So, we now had to buy double everything. The day before we were supposed to close on our new home, I went into labor and delivered the twins nearly 17 weeks early - March 29, 2007. They were born at 23.4 weeks. This was yet another sup rise since all of my other children were term babies - mostly past due babies. We closed on our new home in my hospital room on March 30, 2007. We went from being so excited about moving into our new home to not even unpacking our house for months. The twins had so many struggles during their NICU days. There were many times that we were told Carver wouldn't make it through the night. We would be called in the middle of the night and would have to run to the hospital with our priest to pray over Carver. They asked us to sign a DNR order on more then one occasion. We just couldn't sign it. We said that if Carver wasn't supposed to live, God would take him when it was time. Until then, we wanted them to do everything possible to keep him alive. Kinnick and Carver both started their journey with PDA ligations. I had no idea how big of a deal this surgery really was. Both babies really struggled to recover from the surgery. Carver developed a grade 2 and 4 bleed after the surgery and nearly lost his life. He was put on the High Frequency Ventilator for 2 months trying to recover. He maxed out the conventional ventilator and got holes in his lungs causing him to need chest tubes to relieve the pressure. He had 2 different central lines, multiple blood transfusions, and a total of 6 eye surgeries for the aggressive ROP that he developed. The bleeds caused Carver to be profoundly deaf in both ears. Kinnick was born with a grade 1 and 2 bleed. Her bleeds cleared up pretty quickly. After recovering from her PDA ligation, she seemed to be moving along pretty quickly. We were sure she would be off her ventilator in no time. She started having feed problems and later developed NEC. She had surgery to remove a portion of her intestines. The surgery really set her back causing her to require more assistance from the ventilator. She had a hard time healing and recovering from the surgery. The incision even split back open at one point causing her intestines to spill out of her body. She was rushed back into surgery in the middle of the night to repair the incision. She remained on the ventilator due to the pressure her stomach had on her lungs. The ventilator caused additional damage to her lungs causing a lot of her problems today. She also had multiple blood transfusions including platelet transfusions nearly every other day for 3 months, 3 different central lines and 5 eye surgeries for the aggressive ROP that she developed. Both babies were in the NICU till October 23, 2007 - 7 months. 2 months of this was spent in an NICU in Royal Oak, MI getting eye surgery. Kinnick was only home 3 days before returning to the hospital with a hospital bug - pseudo mo nus. She was in the hospital another month. She lasted one month before returning to the hospital with RSV. She was in the hospital an additional 10 days. We are now preparing to return to Royal Oak, MI for more eye surgery. We are hopeful that the additional eye surgery will save Kinnick and Carver's vision. Currently, Kinnick is blind and Carver is blind in one eye. We're hoping to save at least one eye for each of the babies.
2008 should be a piece of cake after everything that went on in 2007!
In 2006, we decided to build a new home. Our family had grown to 7 when Hayden was born September 21, 2006. We had a nice size home, but really needed at least one more bedroom and more family space. In March of 2006, we picked a builder, floor plan and a sub-division where we planned to live. We finalized our plans in July, 2006 and the build project started in August, 2006. Our house was due to complete March, 2007. We put our existing house on the market November, 2006. We were told that due to the time of year, it could take 6 months to get our house sold. The house sold the first weekend it was on the market. So, we quickly moved our family of 7 into a small 3 bedroom duplex and would have to stay there until our new home was finished. A few days before we closed on the sale of our existing home, we found out that we were going to have another baby. This was a big surprise since we were taking birth control. I was taking a birth control that you take 3 months at a time before you have a period. So, I had no idea how far along I was. A sonogram was done to confirm a due date. During the sonogram, we learned that not only were we having 1 baby, but we were having 2 babies. Wow, the surprises didn't seem to end. I am an identical twin, but never dreamed that I would have a set of twins. I'm told that the older you get, the more likely you are to have twins. I'll be 40 in May, so guess they're trying to tell me 40 is old. I thought I was still pretty young :o). Anyway, the build project was very time consuming and stressful. We finally set a close date of March 30th. We were excited to finally have a date to move into our new home. We were going to hold off buying baby items until we were in our new home. We didn't want to store anything extra in our small duplex. We had a garage sale prior to putting our house on the market to get rid of all of our baby stuff - since we were done having children. This took place just a couple of weeks before we found out we were having another baby(ies). The rest of our equipment was donated to our daycare center and people we know. So, we now had to buy double everything. The day before we were supposed to close on our new home, I went into labor and delivered the twins nearly 17 weeks early - March 29, 2007. They were born at 23.4 weeks. This was yet another sup rise since all of my other children were term babies - mostly past due babies. We closed on our new home in my hospital room on March 30, 2007. We went from being so excited about moving into our new home to not even unpacking our house for months. The twins had so many struggles during their NICU days. There were many times that we were told Carver wouldn't make it through the night. We would be called in the middle of the night and would have to run to the hospital with our priest to pray over Carver. They asked us to sign a DNR order on more then one occasion. We just couldn't sign it. We said that if Carver wasn't supposed to live, God would take him when it was time. Until then, we wanted them to do everything possible to keep him alive. Kinnick and Carver both started their journey with PDA ligations. I had no idea how big of a deal this surgery really was. Both babies really struggled to recover from the surgery. Carver developed a grade 2 and 4 bleed after the surgery and nearly lost his life. He was put on the High Frequency Ventilator for 2 months trying to recover. He maxed out the conventional ventilator and got holes in his lungs causing him to need chest tubes to relieve the pressure. He had 2 different central lines, multiple blood transfusions, and a total of 6 eye surgeries for the aggressive ROP that he developed. The bleeds caused Carver to be profoundly deaf in both ears. Kinnick was born with a grade 1 and 2 bleed. Her bleeds cleared up pretty quickly. After recovering from her PDA ligation, she seemed to be moving along pretty quickly. We were sure she would be off her ventilator in no time. She started having feed problems and later developed NEC. She had surgery to remove a portion of her intestines. The surgery really set her back causing her to require more assistance from the ventilator. She had a hard time healing and recovering from the surgery. The incision even split back open at one point causing her intestines to spill out of her body. She was rushed back into surgery in the middle of the night to repair the incision. She remained on the ventilator due to the pressure her stomach had on her lungs. The ventilator caused additional damage to her lungs causing a lot of her problems today. She also had multiple blood transfusions including platelet transfusions nearly every other day for 3 months, 3 different central lines and 5 eye surgeries for the aggressive ROP that she developed. Both babies were in the NICU till October 23, 2007 - 7 months. 2 months of this was spent in an NICU in Royal Oak, MI getting eye surgery. Kinnick was only home 3 days before returning to the hospital with a hospital bug - pseudo mo nus. She was in the hospital another month. She lasted one month before returning to the hospital with RSV. She was in the hospital an additional 10 days. We are now preparing to return to Royal Oak, MI for more eye surgery. We are hopeful that the additional eye surgery will save Kinnick and Carver's vision. Currently, Kinnick is blind and Carver is blind in one eye. We're hoping to save at least one eye for each of the babies.
2008 should be a piece of cake after everything that went on in 2007!
Thursday, January 3, 2008
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