Well, we have been truly blessed this Christmas. On Friday night (12/23/05), Kayla's Pulmonologist stopped by the house to visit Kayla and decided that Kayla was strong enough to begin trials off of the ventilator. Jeff and I were completely stunned by the news since just 3 weeks earlier he thought that we would have to wait until the spring to start taking her off. He said that he was so amazed at how strong Kayla was and how much she was moving that it was likely that she would do really well since her lung muscles were probably getting stronger as well. He also mentioned that her weight gain seemed very good and that would help to support her while she’s off of the ventilator burning more calories than normal. Kayla weighed in today at 14 lbs. 8.5 oz.
We started taking her off of the ventilator for 30 minute spurts a few times a day. Today we took her off 3 times. If she handles her trials well, then we can increase the time by 15 minutes every 3 days. So far Kayla has handled her first few trials well so we are hopeful that her progress will continue. The only changes that we see are in the amount that she needs to be suctioned when she is off of the ventilator. We are so ecstatic to have a chance to take her out of her room for these trials that we usually spend the time walking her around the house and showing her different parts of the house. It has been fun introducing her to the dogs who stay downstairs most of the time. When she sees them her eyes get so wide with curiosity. The dogs seem to understand what is going on and are very calm and sweet when she’s around them too.
Kayla has been moving more everyday and has really started to make meaningful movements with her hands. We bought her some ‘Brainy Baby’ toys for Christmas that light up and play music and she has learned how to hit the keys to make them play. It’s so amazing watching her learn and grow. What a little miracle baby!
We need to run but will write more later.
Have a Wonderful New Year,
Lisa
Friday, December 30, 2005
Tuesday, December 20, 2005
Kayla's Made Her First Sound
Well, it’s unbelievable but we have already been home with Kayla for over a month. So much has happened since we left the hospital. It has been pretty overwhelming getting settled into our new routine but it has been wonderful to finally have Kayla home with us. Kayla is improving by leaps and bounds each day. We have so much to be thankful for and both Jeff and I feel so blessed to have Kayla in our lives.
Kayla arrived home on Tuesday, November 8, 2005 at 10:30 a.m. by ambulance. It was so incredible to finally see Kayla outside of the hospital. She looked so beautiful the first time the sun hit her sweet face. I rode in the ambulance with her while Grandma Jane and Jeff followed us in the car. I was overcome with emotion on the ride home and cried most of the way there. Coming home by ambulance wasn’t quite what we had imagined for her homecoming but it didn’t really matter at that moment, she was finally coming home.
Kayla began to show immediate changes the first day she was home. She was awake all day and was checking out her new environment with total amazement. Jeff’s brother Mitch and our nieces, Shelby and Lindsay, arrived that day for a visit from the East coast. They spent several days helping us out and loving Kayla up. It was so great to have them here with us to help us get settled in. Both the girls fell madly in love with Kayla, it was so sweet. Jeff and I really miss having them here with us but Kayla especially misses them!
Since Kayla has been home, she has been growing like a little weed. She has surpassed the doctor’s expectations in so many areas already. What an amazing little girl. Kayla was 10 lbs the day she left the hospital and today (12/20) she weighed in at a whopping 14 lbs, almost 10 lbs more than her birth weight. She is finally starting to put on a little baby fat and is filling in her long tall frame. Kayla is nursing like a champ. Her suck has gotten stronger every day and the doctors have begun to reduce her tube feedings slightly to keep her at the proper weight. We are hopeful that she will eventually feed solely by breast during the day although she will continue to be tube fed throughout the night for the time being. It is so amazing that she is able to eat by mouth while on a ventilator. What a little fighter she is! Kayla is now over 2 feet tall (25 inches to be exact) and is in the 97th percentile for height. It looks like she definitely got the tall genes from Jeff and me.
Kayla’s ventilator settings have not been changed since we have been home and her pulmonologist does not want to make any changes until the Spring. We are hoping that she will eventually get off of the ventilator but for now we are just focusing on getting through each day. The doctor isn’t sure yet when she will have her trach removed but it could be years so we are trying not to think about it too much.
So many of you have asked what life is like for us now that we are home. It is so wonderful but is still not completely “normal”. Kayla spends most of the time in her room and only is able to leave when several of us are available to relocate her equipment to another room. We sometimes move her to the TV room especially when we have to watch her overnight. We have been able to take Kayla out of the house 5 times now for doctor’s visits. It is quite a task to get her out of the house but it is so great to be mobile. In order to leave the house we have to take 5 different machines with us and an emergency kit so we have to be incredibly organized to successfully get out and be on time to the doctor. We have to take her ventilator and tubing, a backup battery (37 lbs), a suction machine to keep her lungs clear, a pulse oxymeter to measure her oxygen saturation and heart rate and a feeding pump to feed her. We purchased a special stroller to hold everything but didn’t realize just how heavy it would all be so we are looking into some other options to make traveling a bit easier. Kayla has 9 different doctors at the moment and then also has several other services such as speech therapy and physical therapy. One of Kayla’s doctors generously makes house calls and both her speech and physical therapy will be coming to our home for visits as well. We are trying to limit her exposure to sick kids so we are grateful to the doctors who make house calls or follow her by phone. The doctors have warned us to keep her healthy during the winter months so that we don’t land back up in the hospital again. They have also cautioned us that if she gets sick, she may not have the ability or strength to fight it off so we are being very careful with her.
Kayla made her first real baby sounds on 12/2. One of the hardest parts of having a baby that is intubated or that has a trach is that they can’t cry or make baby sounds. Kayla’s trach tube is placed below her vocal cords so no air passes by the cords to allow her to make sounds. We have never heard Kayla cry up until now. Kayla has somehow figured out how to get air around her trach and is starting to make small sounds. The first time Jeff and I heard her voice we both cried. It was the sweetest sound we had ever heard. We posted up a video so you can hear her. Kayla also began moving her head and neck on her own a few weeks ago. She is able to lift her head off of you if you are holding her against your chest. She is also able to turn her head from side to side now. This is a huge accomplishment since we have had to turn her head every 1-2 hours since her birth so that she doesn't get too stiff from sleeping on one side too long.
Jeff and I have begun to live our lives in 8 hour shifts since we have been home. The nursing shifts are from 7 am to 3 pm, 3 pm to 11 pm and 11 pm to 7 am. It feels like our doorbell is constantly ringing these days. We currently have about 16 hours of nursing care each day which leaves 8 hours a day where Jeff and I care for Kayla by ourselves. Sometimes we have only 8 hours a day of coverage and sometimes we have 24 hours a day so it really varies depending on the nursing availability. So far we have had to cover a couple of night shifts (11 pm to 7 a.m.) each week which is really draining. It is impossible to sleep for more than half an hour at a time on night shifts since the equipment needs to be maintained constantly. She has a humidifier on her ventilator that needs to be filled with water and suctioned out every 45 minutes to an hour. About once an hour, Kayla’s trach needs to be suctioned to keep her lungs clear. Every three hours we need to feed her with a feeding pump unless she is breastfeeding. And of course a fresh diaper every 1-2 hours. We also have to care for her trach site (or stoma) and her feeding tube (Mic-key button) a few times a day. On top of all of that, I am still pumping breast milk when I’m not feeding Kayla so as you can see our days are pretty full. With Kayla’s busy schedule we don’t have much free time to take care of ourselves but we are trying to make an effort to get out of the house every once in a while when we have nursing coverage. We have been very happy with the nurses that have been assigned to Kayla’s case. We were not quite sure what to expect when we left the hospital so we have been pleasantly surprised. Considering how much time we all spend together, it’s a good thing that we get along so well.
Over the Thanksgiving holiday, my brother Chris and my sister-in-law Dawn came to visit us from Maryland. They brought their 5 kids out as well but we couldn’t risk Kayla’s health so the kids all stayed in Santa Cruz with my parents and sister, Kathy. It was very sad to have the kids so close but not be able to see them. It really made Jeff and I realize what life will be like for the next few years. We had a great time with Chris and Dawn but ate way too much. Kayla joined us at the table but slept through the entire meal. This was Kayla’s first trip to the first floor of our house since we had her home.
Jeff and I have been working hard to prepare the house for Christmas since we will be spending the holidays at home with Kayla. We are looking forward to spending our first Christmas together as a family. So many of you have asked us what you can do for us. Jeff and I discussed it and feel that the best thing that anyone can do for us right now is to help fund research for Myotonic Dystrophy. Although Kayla may have a shortened lifespan due to her disease, we are hopeful that the recent research developments will prove to be successful in finding a cure in her lifetime. We are working on a plan right now to get more involved with the MDA (Muscular Dystrophy Association). If you would like to help, please donate to the MDA, specifically for Myotonic Dystrophy research, I have posted a link on our registry page. You can donate to the MDA, specifically for Myotonic Muscular Dystrophy (MMD, Steinert’s Disease), and make the gift in honor of Kayla. For those of you who are interested, her full name is Kayla Michele Vittek. Kayla is such an amazing little girl with such a beautiful spirit and has touched the lives of everyone who has crossed her path. Please help us help her by making a donation.
Well, that’s all for now. I promise to update the site more regularly now that we are getting settled in. We will be adding photos regularly so keep checking back.
We wish you all a healthy, happy holiday season. Thank you again for all of your continued prayers, love and support.
Shalom,
Lisa
Kayla arrived home on Tuesday, November 8, 2005 at 10:30 a.m. by ambulance. It was so incredible to finally see Kayla outside of the hospital. She looked so beautiful the first time the sun hit her sweet face. I rode in the ambulance with her while Grandma Jane and Jeff followed us in the car. I was overcome with emotion on the ride home and cried most of the way there. Coming home by ambulance wasn’t quite what we had imagined for her homecoming but it didn’t really matter at that moment, she was finally coming home.
Kayla began to show immediate changes the first day she was home. She was awake all day and was checking out her new environment with total amazement. Jeff’s brother Mitch and our nieces, Shelby and Lindsay, arrived that day for a visit from the East coast. They spent several days helping us out and loving Kayla up. It was so great to have them here with us to help us get settled in. Both the girls fell madly in love with Kayla, it was so sweet. Jeff and I really miss having them here with us but Kayla especially misses them!
Since Kayla has been home, she has been growing like a little weed. She has surpassed the doctor’s expectations in so many areas already. What an amazing little girl. Kayla was 10 lbs the day she left the hospital and today (12/20) she weighed in at a whopping 14 lbs, almost 10 lbs more than her birth weight. She is finally starting to put on a little baby fat and is filling in her long tall frame. Kayla is nursing like a champ. Her suck has gotten stronger every day and the doctors have begun to reduce her tube feedings slightly to keep her at the proper weight. We are hopeful that she will eventually feed solely by breast during the day although she will continue to be tube fed throughout the night for the time being. It is so amazing that she is able to eat by mouth while on a ventilator. What a little fighter she is! Kayla is now over 2 feet tall (25 inches to be exact) and is in the 97th percentile for height. It looks like she definitely got the tall genes from Jeff and me.
Kayla’s ventilator settings have not been changed since we have been home and her pulmonologist does not want to make any changes until the Spring. We are hoping that she will eventually get off of the ventilator but for now we are just focusing on getting through each day. The doctor isn’t sure yet when she will have her trach removed but it could be years so we are trying not to think about it too much.
So many of you have asked what life is like for us now that we are home. It is so wonderful but is still not completely “normal”. Kayla spends most of the time in her room and only is able to leave when several of us are available to relocate her equipment to another room. We sometimes move her to the TV room especially when we have to watch her overnight. We have been able to take Kayla out of the house 5 times now for doctor’s visits. It is quite a task to get her out of the house but it is so great to be mobile. In order to leave the house we have to take 5 different machines with us and an emergency kit so we have to be incredibly organized to successfully get out and be on time to the doctor. We have to take her ventilator and tubing, a backup battery (37 lbs), a suction machine to keep her lungs clear, a pulse oxymeter to measure her oxygen saturation and heart rate and a feeding pump to feed her. We purchased a special stroller to hold everything but didn’t realize just how heavy it would all be so we are looking into some other options to make traveling a bit easier. Kayla has 9 different doctors at the moment and then also has several other services such as speech therapy and physical therapy. One of Kayla’s doctors generously makes house calls and both her speech and physical therapy will be coming to our home for visits as well. We are trying to limit her exposure to sick kids so we are grateful to the doctors who make house calls or follow her by phone. The doctors have warned us to keep her healthy during the winter months so that we don’t land back up in the hospital again. They have also cautioned us that if she gets sick, she may not have the ability or strength to fight it off so we are being very careful with her.
Kayla made her first real baby sounds on 12/2. One of the hardest parts of having a baby that is intubated or that has a trach is that they can’t cry or make baby sounds. Kayla’s trach tube is placed below her vocal cords so no air passes by the cords to allow her to make sounds. We have never heard Kayla cry up until now. Kayla has somehow figured out how to get air around her trach and is starting to make small sounds. The first time Jeff and I heard her voice we both cried. It was the sweetest sound we had ever heard. We posted up a video so you can hear her. Kayla also began moving her head and neck on her own a few weeks ago. She is able to lift her head off of you if you are holding her against your chest. She is also able to turn her head from side to side now. This is a huge accomplishment since we have had to turn her head every 1-2 hours since her birth so that she doesn't get too stiff from sleeping on one side too long.
Jeff and I have begun to live our lives in 8 hour shifts since we have been home. The nursing shifts are from 7 am to 3 pm, 3 pm to 11 pm and 11 pm to 7 am. It feels like our doorbell is constantly ringing these days. We currently have about 16 hours of nursing care each day which leaves 8 hours a day where Jeff and I care for Kayla by ourselves. Sometimes we have only 8 hours a day of coverage and sometimes we have 24 hours a day so it really varies depending on the nursing availability. So far we have had to cover a couple of night shifts (11 pm to 7 a.m.) each week which is really draining. It is impossible to sleep for more than half an hour at a time on night shifts since the equipment needs to be maintained constantly. She has a humidifier on her ventilator that needs to be filled with water and suctioned out every 45 minutes to an hour. About once an hour, Kayla’s trach needs to be suctioned to keep her lungs clear. Every three hours we need to feed her with a feeding pump unless she is breastfeeding. And of course a fresh diaper every 1-2 hours. We also have to care for her trach site (or stoma) and her feeding tube (Mic-key button) a few times a day. On top of all of that, I am still pumping breast milk when I’m not feeding Kayla so as you can see our days are pretty full. With Kayla’s busy schedule we don’t have much free time to take care of ourselves but we are trying to make an effort to get out of the house every once in a while when we have nursing coverage. We have been very happy with the nurses that have been assigned to Kayla’s case. We were not quite sure what to expect when we left the hospital so we have been pleasantly surprised. Considering how much time we all spend together, it’s a good thing that we get along so well.
Over the Thanksgiving holiday, my brother Chris and my sister-in-law Dawn came to visit us from Maryland. They brought their 5 kids out as well but we couldn’t risk Kayla’s health so the kids all stayed in Santa Cruz with my parents and sister, Kathy. It was very sad to have the kids so close but not be able to see them. It really made Jeff and I realize what life will be like for the next few years. We had a great time with Chris and Dawn but ate way too much. Kayla joined us at the table but slept through the entire meal. This was Kayla’s first trip to the first floor of our house since we had her home.
Jeff and I have been working hard to prepare the house for Christmas since we will be spending the holidays at home with Kayla. We are looking forward to spending our first Christmas together as a family. So many of you have asked us what you can do for us. Jeff and I discussed it and feel that the best thing that anyone can do for us right now is to help fund research for Myotonic Dystrophy. Although Kayla may have a shortened lifespan due to her disease, we are hopeful that the recent research developments will prove to be successful in finding a cure in her lifetime. We are working on a plan right now to get more involved with the MDA (Muscular Dystrophy Association). If you would like to help, please donate to the MDA, specifically for Myotonic Dystrophy research, I have posted a link on our registry page. You can donate to the MDA, specifically for Myotonic Muscular Dystrophy (MMD, Steinert’s Disease), and make the gift in honor of Kayla. For those of you who are interested, her full name is Kayla Michele Vittek. Kayla is such an amazing little girl with such a beautiful spirit and has touched the lives of everyone who has crossed her path. Please help us help her by making a donation.
Well, that’s all for now. I promise to update the site more regularly now that we are getting settled in. We will be adding photos regularly so keep checking back.
We wish you all a healthy, happy holiday season. Thank you again for all of your continued prayers, love and support.
Shalom,
Lisa
Tuesday, November 8, 2005
We're Finally Going Home
We have some incredible news to share with you. The moment that we have been waiting for is finally here! After a long and incredibly challenging 3 ½ months in the hospital (103 days, 18 hours and 22 minutes to be exact), at 8:00 a.m. this morning, Kayla will finally be coming home. Jeff has covered the house in pink and white baloons; I wish you could see it. What a homecoming!
Kayla will be transported from the hospital by ambulance and will be accompanied by a Respiratory Therapist and a Registered Nurse who will transfer her care to the in-home nursing staff who will be with Kayla at home for 16 hours a day.
Jeff and I are so ecstatic to think about what life will be like with Kayla in our home. We will finally be united as a family and all be able to sleep under the same roof! I will be especially happy to finally sleep in a real bed again and start eating something besides hospital food. I have had enough turkey and gravy to last me a lifetime. Hopefully our 2 dogs (Chessy & Chai) and 2 cats (Kikko & Joey) will accept Kayla into our home without being too jealous. Our animals have been so love starved over the last few months so hopefully that they won’t care about having a new member of the family as long as they start getting some attention.
We have been so busy over the last few weeks preparing our home and Kayla's room for the nursing staff and equipment that will support her. We have also been learning about all of the support services that are available for special needs children and getting her signed up for all of the programs for which she is eligible.
The last few weeks have been full of some amazing milestones for little Kayla. On October 20th, Kayla had an oral feeding test called a Modified Barium Swallow. The speech therapist mixed my breast milk with liquid barium and then watched Kayla swallow it with an x-ray guided procedure to monitor her swallowing patterns. Thankfully Kayla did not aspirate or ingest any milk into her lungs and was fairly effective in swallowing. Before this, we had no idea how difficult a process swallowing really is. The speech pathologist says it is one of the most complex processes in the human body. Who would have known! We were able to begin feeding Kayla small amounts of milk by mouth a few days after her test. She had her first try with a bottle on October 24th. After 93 exhausting days of pumping my breast milk night and day, Kayla was able to successfully begin breastfeeding on October 28th. Way to go Kayla! Although she has a very week suck still and only takes in small amounts of milk, she is getting stronger every day.
Kayla celebrated her first Halloween and was so cute in her red and black ladybug outfit. We added some new pictures to the photo gallery. For those of you who have been asking to see more pictures, we are in the middle of completing a more permanent website for Kayla where we can post videos and as many pictures as we want. We will post a link to the site once we have time to finish it.
On November 1st, Kayla had a hearing test and passed with flying colors. She also had a follow-up eye exam which showed that the corneal clouding, which was seen in her previous exam, had cleared up. The doctor did not see any issues with her eyes this time but we will be following up with her doctor over the next year to make sure that no more issues arise.
Kayla’s breathing has continued to improve and she is now up to 12 hours a day on CPAP (pressured support only). During these CPAP trials, Kayla has to initiate all of her own breaths but is given just a little pressure support with each breath she takes to help keep her lungs fully inflated. For those of you who know anyone with sleep apnea, CPAP masks are what are used to make sure that you don’t stop breathing in the middle of the night. Kayla is usually on CPAP during the day and then a rate of 5 machine breaths per minute at night so basically she is doing most of the work now. We are hoping that someday soon we can start testing her off of the ventilator during the day. It would be so amazing to hold her without having to drag along all of her tubing. So far we have only been able to move her about 5 feet away from her bed since she was born. It will be so incredible just to be able to pick her up and carry her around the house. This is something that we would have taken for granted before this experience but now things like that seem so amazing. It’s interesting how this experience has changed our perspective on life. We really don’t take anything for granted anymore.
Over the weekend, Kayla weighed in at a whopping 10 lbs, more than double her birth weight. It is so great to see her put on weight and continue to get stronger every day.
Well, we need to get some sleep before we head out to the hospital in a few hours. Thanks for keeping up with everything and for your patience through this experience. Also, thanks again for posting so many wonderful messages on the message boards. We are looking forward to the day that we can share all of your messages with Kayla so she knows how much love and support she had during this difficult time but for now we are taking one day (or moment) at a time.
Hopefully, after we get settled in at home over the next few weeks, we can get back in touch with you all again and can finally get back to a more normal routine of life.
All of our love,
Lisa
Kayla will be transported from the hospital by ambulance and will be accompanied by a Respiratory Therapist and a Registered Nurse who will transfer her care to the in-home nursing staff who will be with Kayla at home for 16 hours a day.
Jeff and I are so ecstatic to think about what life will be like with Kayla in our home. We will finally be united as a family and all be able to sleep under the same roof! I will be especially happy to finally sleep in a real bed again and start eating something besides hospital food. I have had enough turkey and gravy to last me a lifetime. Hopefully our 2 dogs (Chessy & Chai) and 2 cats (Kikko & Joey) will accept Kayla into our home without being too jealous. Our animals have been so love starved over the last few months so hopefully that they won’t care about having a new member of the family as long as they start getting some attention.
We have been so busy over the last few weeks preparing our home and Kayla's room for the nursing staff and equipment that will support her. We have also been learning about all of the support services that are available for special needs children and getting her signed up for all of the programs for which she is eligible.
The last few weeks have been full of some amazing milestones for little Kayla. On October 20th, Kayla had an oral feeding test called a Modified Barium Swallow. The speech therapist mixed my breast milk with liquid barium and then watched Kayla swallow it with an x-ray guided procedure to monitor her swallowing patterns. Thankfully Kayla did not aspirate or ingest any milk into her lungs and was fairly effective in swallowing. Before this, we had no idea how difficult a process swallowing really is. The speech pathologist says it is one of the most complex processes in the human body. Who would have known! We were able to begin feeding Kayla small amounts of milk by mouth a few days after her test. She had her first try with a bottle on October 24th. After 93 exhausting days of pumping my breast milk night and day, Kayla was able to successfully begin breastfeeding on October 28th. Way to go Kayla! Although she has a very week suck still and only takes in small amounts of milk, she is getting stronger every day.
Kayla celebrated her first Halloween and was so cute in her red and black ladybug outfit. We added some new pictures to the photo gallery. For those of you who have been asking to see more pictures, we are in the middle of completing a more permanent website for Kayla where we can post videos and as many pictures as we want. We will post a link to the site once we have time to finish it.
On November 1st, Kayla had a hearing test and passed with flying colors. She also had a follow-up eye exam which showed that the corneal clouding, which was seen in her previous exam, had cleared up. The doctor did not see any issues with her eyes this time but we will be following up with her doctor over the next year to make sure that no more issues arise.
Kayla’s breathing has continued to improve and she is now up to 12 hours a day on CPAP (pressured support only). During these CPAP trials, Kayla has to initiate all of her own breaths but is given just a little pressure support with each breath she takes to help keep her lungs fully inflated. For those of you who know anyone with sleep apnea, CPAP masks are what are used to make sure that you don’t stop breathing in the middle of the night. Kayla is usually on CPAP during the day and then a rate of 5 machine breaths per minute at night so basically she is doing most of the work now. We are hoping that someday soon we can start testing her off of the ventilator during the day. It would be so amazing to hold her without having to drag along all of her tubing. So far we have only been able to move her about 5 feet away from her bed since she was born. It will be so incredible just to be able to pick her up and carry her around the house. This is something that we would have taken for granted before this experience but now things like that seem so amazing. It’s interesting how this experience has changed our perspective on life. We really don’t take anything for granted anymore.
Over the weekend, Kayla weighed in at a whopping 10 lbs, more than double her birth weight. It is so great to see her put on weight and continue to get stronger every day.
Well, we need to get some sleep before we head out to the hospital in a few hours. Thanks for keeping up with everything and for your patience through this experience. Also, thanks again for posting so many wonderful messages on the message boards. We are looking forward to the day that we can share all of your messages with Kayla so she knows how much love and support she had during this difficult time but for now we are taking one day (or moment) at a time.
Hopefully, after we get settled in at home over the next few weeks, we can get back in touch with you all again and can finally get back to a more normal routine of life.
All of our love,
Lisa
Monday, October 31, 2005
Happy Halloween Kayla
Quick update on Kayla ....Kayla has been doing very well and pretty stable the past few weeks. Lisa and I attended the Myotonic Dystrophy International Conference in Los Angeles at USC Medical Campus last weekend. Learned alot. Will share more later.
We've also been very busy making arrangements with in-home nursing providers so that we can finally bring our baby Kayla home (on a ventilator)...maybe in November :)
Stay tuned for further updates and keep up the prayers !!
Thanks again for everyone's support...
Jeff, Lisa, & Kayla
P.S. I have added a new photo from Halloween!
We've also been very busy making arrangements with in-home nursing providers so that we can finally bring our baby Kayla home (on a ventilator)...maybe in November :)
Stay tuned for further updates and keep up the prayers !!
Thanks again for everyone's support...
Jeff, Lisa, & Kayla
P.S. I have added a new photo from Halloween!
Wednesday, October 12, 2005
We are Trying to Wean Kayla from the Ventilator Again
We apologize that it’s been so long since we have had time to update the site. We have been busy adjusting to Kayla’s new environment after our move from the 2nd Floor N.I.C.U. (Neonatal Intensive Care Unit) up to the 6th Floor Pediatric I.C.U. Since our move on September 18th, we have moved rooms 3 times so I’m sure you can imagine how crazy it has been. Kayla was recently moved to the less severe side of the PICU where babies are being prepared to go home. When we were told this we thought that we would be going home right away but it will probably take up to 2 months to find in-home nursing. Kayla will need up to 16 hours of in-home nursing a day once we leave the hospital. Kayla will be transported home by ambulance with a nurse and respiratory therapist caring for her along the way. We are very eager to get her home but are also a little apprehensive since 8 hours of each day we will be completely on our own.
Jeff and I are currently training with the nurses so that we can care for Kayla when we go home. Some things have been pretty scary to learn; however, with practice, we have become comfortable with her care. Caring for a trach is very involved but we seem to be getting the hang of it finally.
Over the last few weeks the doctors have been working on trying to wean Kayla’s ventilator settings. The doctors in the PICU have a different approach to weaning than the doctors in the NICU had. According to Kayla’s doctor “I wouldn’t go run a marathon without exercising first so that is what we are going to do with Kayla”. They are slowly working now on exercising Kayla’s lung muscles. They have taken her from 30 minutes a shift on just pressured support to 2 hours now. She is basically breathing on her own for almost 6 hours a day now. The doctors will keep increasing the time on pressured support until they feel they can completely take her off of the ventilator for short spurts. They will eventually try and get her completely off during the day for several hours but we are taking one day at a time.
Kayla had a follow up MRI on Friday (10/7) and was able to make it through the entire procedure off of the machine ventilator with just oxygen. It was really exciting to see her breathing on her own although it was a bit scary as well. We are hoping with time that she may be able to spend parts of the day completely off of the ventilator. She will definitely have to use the ventilator at night for a few years but if we could at least have some time during the day where she could be off, we would be so happy.
On Saturday (10/8), Jeff and I went to an annual reunion of babies who have made it out of the special care nursery over the years. We had a good time talking with other parents and seeing their kids. I don’t think there have ever been so many triplets in one place before. It was really great seeing how many kids were thriving now. I have to say it was a little weird only coming with a picture of Kayla. Hopefully someday we will be able to bring her to the reunion.
A friend of mine who has a baby with Myotonic Muscular Dystrophy, shared this with me and I wanted to share it with you. It really sums up what we are going through right now.
I am often asked to describe the experience of raising a child with a disability -- to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this...
"Welcome to Holland”
When you're going to have a baby, it's like planning a fabulous vacation trip to Italy. You buy a bunch of guide books and make your wonderful plans... the Coliseum, the Sistine Chapel, Gondolas. You may learn some handy phrases in Italian. It's all very exciting. After several months of eager anticipation, the day finally arrives. You pack your bags and off you go.
Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland!" "Holland?" you say. "What do you mean, Holland? I signed up for Italy. I'm supposed to be in Italy. All my life I've dreamed of going to Italy." But there's been a change in the flight plan. They've landed in Holland and there you must stay. The important thing is that they haven't taken you to a horrible, disgusting, filthy place full of pestilence, famine, and disease. It's just a different place. So, you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It's just a different place. It's slower paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around. You begin to notice that Holland has windmills. Holland has tulips. And Holland even has Rembrandts. But everyone you know is busy coming and going from Italy, and they're all bragging about what a wonderful time they had there. And for the rest of your life you will say, " Yes, that's where I was supposed to go. That's what I had planned." And the pain of that experience will never, ever, ever, go away. The loss of that dream is a very significant loss. But if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.
Jeff and I are currently training with the nurses so that we can care for Kayla when we go home. Some things have been pretty scary to learn; however, with practice, we have become comfortable with her care. Caring for a trach is very involved but we seem to be getting the hang of it finally.
Over the last few weeks the doctors have been working on trying to wean Kayla’s ventilator settings. The doctors in the PICU have a different approach to weaning than the doctors in the NICU had. According to Kayla’s doctor “I wouldn’t go run a marathon without exercising first so that is what we are going to do with Kayla”. They are slowly working now on exercising Kayla’s lung muscles. They have taken her from 30 minutes a shift on just pressured support to 2 hours now. She is basically breathing on her own for almost 6 hours a day now. The doctors will keep increasing the time on pressured support until they feel they can completely take her off of the ventilator for short spurts. They will eventually try and get her completely off during the day for several hours but we are taking one day at a time.
Kayla had a follow up MRI on Friday (10/7) and was able to make it through the entire procedure off of the machine ventilator with just oxygen. It was really exciting to see her breathing on her own although it was a bit scary as well. We are hoping with time that she may be able to spend parts of the day completely off of the ventilator. She will definitely have to use the ventilator at night for a few years but if we could at least have some time during the day where she could be off, we would be so happy.
On Saturday (10/8), Jeff and I went to an annual reunion of babies who have made it out of the special care nursery over the years. We had a good time talking with other parents and seeing their kids. I don’t think there have ever been so many triplets in one place before. It was really great seeing how many kids were thriving now. I have to say it was a little weird only coming with a picture of Kayla. Hopefully someday we will be able to bring her to the reunion.
A friend of mine who has a baby with Myotonic Muscular Dystrophy, shared this with me and I wanted to share it with you. It really sums up what we are going through right now.
I am often asked to describe the experience of raising a child with a disability -- to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this...
"Welcome to Holland”
When you're going to have a baby, it's like planning a fabulous vacation trip to Italy. You buy a bunch of guide books and make your wonderful plans... the Coliseum, the Sistine Chapel, Gondolas. You may learn some handy phrases in Italian. It's all very exciting. After several months of eager anticipation, the day finally arrives. You pack your bags and off you go.
Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland!" "Holland?" you say. "What do you mean, Holland? I signed up for Italy. I'm supposed to be in Italy. All my life I've dreamed of going to Italy." But there's been a change in the flight plan. They've landed in Holland and there you must stay. The important thing is that they haven't taken you to a horrible, disgusting, filthy place full of pestilence, famine, and disease. It's just a different place. So, you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It's just a different place. It's slower paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around. You begin to notice that Holland has windmills. Holland has tulips. And Holland even has Rembrandts. But everyone you know is busy coming and going from Italy, and they're all bragging about what a wonderful time they had there. And for the rest of your life you will say, " Yes, that's where I was supposed to go. That's what I had planned." And the pain of that experience will never, ever, ever, go away. The loss of that dream is a very significant loss. But if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.
Saturday, September 24, 2005
Our "New Normal"
Jeff and I returned from Los Angeles Sunday morning (9/18) to find that Kayla had been re-intubated and put back on the ventilator. After being off of the ventilator for 43 hours her lungs were worn out and they could not support her breathing anymore. We were very discouraged and cried a lot knowing that the next step would be a tracheostomy tube or ‘trach’. The endotrachial tube (ET) in her mouth has a short life span and two months is about as long as the doctors like to have it in without worrying about it doing damage to the vocal cords and trachea.
Jeff and I enjoyed meeting all of the families at the fundraiser in LA. We got to meet several families who had babies born with Congenital Myotonic Dystrophy so it was really great to share stories and learn from their experiences. We also met many people who have the juvenile and adult forms of Myotonic Muscular Dystrophy (MMD). What a great group of people! The most interesting thing that we learned was how varied the symptoms can be even with siblings and members of the same family. This gave us hope for Kayla’s long term prognosis although she has the most severe form of this dystrophy.
Kayla was scheduled for surgery Wednesday (9/21/05) afternoon for both a trach and a gastrointestinal (GI) feeding tube. The feeding tube is placed directly into her stomach through her stomach wall. Babies with Myotonic Dystrophy usually have problems sucking and swallowing properly and there is always a fear of aspiration where food can enter the lungs and cause pneumonia and possible death. They have to be sure that Kayla has an alternate way to eat until further testing can be run on her to ensure safe oral feeding.
Both of Kayla’s surgeries went well and she is now in her own room recovering. She was moved from the Neonatal ICU to the Pediatric ICU where one parent is able to stay with her 24/7 so life is starting to get just a little bit easier. Each room has a phone, TV & VCR so we can keep up with what’s going on outside of our little world here. They also feed breastfeeding mothers so I don’t have to leave the room to find food everyday. They also have room where they can put a cot for another parent to sleep so it’s nice to both be able to stay at the hospital all night if we want to. It has been so nice being able to wake up next to Kayla and capture the moments that we have been missing over the last two months of her life. Life is feeling just a little more normal now. As Jeff and I like to say, this is our ‘NEW normal’.
Yesterday morning the doctors began feeding Kayla again and she is tolerating her food well. They have increased her milk from 3 ml/hour yesterday to 8 ml/hour this morning and 13 ml/hour this afternoon. They are working towards 20 ml/hour by the end of the day today if all goes well. Kayla has been breathing really effectively since she had her trach put in. They have moved her to the lowest possible ventilator settings and she is tolerating it well. Yesterday they tried her off of the ventilator for an hour and she did very well. They will begin weaning her for a couple hours per day and will continue to monitor her progress. The nice thing about having a trach is that they can easily take her on and off of the ventilator without any damage to her trachea or throat. It took us a little while to get used to the idea of the trach but now we are seeing the benefits of it.
Grandma Jane left yesterday (9/23) to return back to Santa Cruz after almost 3 months with us. She has been an unbelievable blessing for the three of us. Besides keeping us fed and organized, she also provided so much love, friendship and support during these difficult months and we will miss having her around. If I can be as great a mom to Kayla as my mom is to me, Kayla will be one lucky girl. We love you MOM!
Today is Kayla’s original due date (Day 59 in the hospital) so Jeff and I are going to celebrate in her room tonight. She is officially 40 weeks old today and weighs a whopping 8 lbs. 1.6 oz. She is getting cuter by the minute, especially now that we are able to finally see her face without tubes sticking out and tape all over it.
We will keep you updated on her progress.
All of our love,
Lisa
Jeff and I enjoyed meeting all of the families at the fundraiser in LA. We got to meet several families who had babies born with Congenital Myotonic Dystrophy so it was really great to share stories and learn from their experiences. We also met many people who have the juvenile and adult forms of Myotonic Muscular Dystrophy (MMD). What a great group of people! The most interesting thing that we learned was how varied the symptoms can be even with siblings and members of the same family. This gave us hope for Kayla’s long term prognosis although she has the most severe form of this dystrophy.
Kayla was scheduled for surgery Wednesday (9/21/05) afternoon for both a trach and a gastrointestinal (GI) feeding tube. The feeding tube is placed directly into her stomach through her stomach wall. Babies with Myotonic Dystrophy usually have problems sucking and swallowing properly and there is always a fear of aspiration where food can enter the lungs and cause pneumonia and possible death. They have to be sure that Kayla has an alternate way to eat until further testing can be run on her to ensure safe oral feeding.
Both of Kayla’s surgeries went well and she is now in her own room recovering. She was moved from the Neonatal ICU to the Pediatric ICU where one parent is able to stay with her 24/7 so life is starting to get just a little bit easier. Each room has a phone, TV & VCR so we can keep up with what’s going on outside of our little world here. They also feed breastfeeding mothers so I don’t have to leave the room to find food everyday. They also have room where they can put a cot for another parent to sleep so it’s nice to both be able to stay at the hospital all night if we want to. It has been so nice being able to wake up next to Kayla and capture the moments that we have been missing over the last two months of her life. Life is feeling just a little more normal now. As Jeff and I like to say, this is our ‘NEW normal’.
Yesterday morning the doctors began feeding Kayla again and she is tolerating her food well. They have increased her milk from 3 ml/hour yesterday to 8 ml/hour this morning and 13 ml/hour this afternoon. They are working towards 20 ml/hour by the end of the day today if all goes well. Kayla has been breathing really effectively since she had her trach put in. They have moved her to the lowest possible ventilator settings and she is tolerating it well. Yesterday they tried her off of the ventilator for an hour and she did very well. They will begin weaning her for a couple hours per day and will continue to monitor her progress. The nice thing about having a trach is that they can easily take her on and off of the ventilator without any damage to her trachea or throat. It took us a little while to get used to the idea of the trach but now we are seeing the benefits of it.
Grandma Jane left yesterday (9/23) to return back to Santa Cruz after almost 3 months with us. She has been an unbelievable blessing for the three of us. Besides keeping us fed and organized, she also provided so much love, friendship and support during these difficult months and we will miss having her around. If I can be as great a mom to Kayla as my mom is to me, Kayla will be one lucky girl. We love you MOM!
Today is Kayla’s original due date (Day 59 in the hospital) so Jeff and I are going to celebrate in her room tonight. She is officially 40 weeks old today and weighs a whopping 8 lbs. 1.6 oz. She is getting cuter by the minute, especially now that we are able to finally see her face without tubes sticking out and tape all over it.
We will keep you updated on her progress.
All of our love,
Lisa
Saturday, September 17, 2005
Heading Out to a Family Conference for Myotonic Dystrophy
Jeff and I are heading out to Los Angeles this morning to go to a Myotonic Dystrophy conference in Manhattan Beach tonight. We will be meeting with several families that we have been chatting with on a Myotonic chat group for the last month. We are eager to learn as much as we can about Myotonic Dystrophy so this event should be a great start.
Kayla has made some progress over the last few days. Her feeding tube was moved from her lower bowel to her stomach two days ago and she is handling the food well. Yesterday (9/16/05), Kayla's breathing tube was removed and she is only being supported by a nasal canula with pressured oxygen. So far she is hanging in there although she has had a handful of times when her vital signs have gone a little off the charts. She has recovered from the heart drops and C02 increases well and we are hoping that she continues this progress and can stay off of the ventilator. Unfortunately, if she fails this time, she will need to have a trach put in but we are feeling like she will make it so we aren't going to worry about that for now.
Kayla weighed in yesterday at 7 lbs. 11 oz. and is is getting bigger by the day! Go Kayla!
We are rushing out the door but will write more when we return home tomorrow.
Love,
Lisa
Kayla has made some progress over the last few days. Her feeding tube was moved from her lower bowel to her stomach two days ago and she is handling the food well. Yesterday (9/16/05), Kayla's breathing tube was removed and she is only being supported by a nasal canula with pressured oxygen. So far she is hanging in there although she has had a handful of times when her vital signs have gone a little off the charts. She has recovered from the heart drops and C02 increases well and we are hoping that she continues this progress and can stay off of the ventilator. Unfortunately, if she fails this time, she will need to have a trach put in but we are feeling like she will make it so we aren't going to worry about that for now.
Kayla weighed in yesterday at 7 lbs. 11 oz. and is is getting bigger by the day! Go Kayla!
We are rushing out the door but will write more when we return home tomorrow.
Love,
Lisa
Monday, September 12, 2005
Kayla Has Congenital Myotonic Dystrophy
Well, after 46 painstaking days of waiting for a diagnosis for our sweet little Kayla, we finally received word back from the doctors yesterday. Unfortunately, the news is not good. Kayla has been diagnosed with a severe form of Congenital (from birth) Myotonic Muscular Dystrophy. According to statistics, only 1 in 100,000 babies are born with this severe form of the disorder. As a general rule, the earlier the disease is detected, especially at birth, the more severe the symptoms will be. It is a multi system disorder that can affect many parts of the body. Most patients experience symptoms including muscle and respiratory weakness, mental and learning disabilities, heart problems, speech, hearing and vision problems, as well as issues with swallowing and processing food. The risk is very high that it could be life threatening especially during the first few months of life as her muscle weakness makes her more prone to respiratory failure, infections, and other ailments.
We feel that Kayla has been put on this earth for a reason and we are not willing to think about life without her right now. So far she has proven to be such a strong fighter that we have no reason to believe that she won’t continue to keep improving and teach us all about the fragility of life and its possibilities.
In the next few weeks we will be faced with making decisions regarding her long term breathing and feeding support including a possible tracheostomy and insertion of a gastrointestinal feeding tube into her stomach.
We will be meeting with the doctors this week to discuss these issues and what the future may hold for Kayla. If you would like more information about Congenital Myotonic Dystrophy, here are a few web links. http://www.mdausa.org/publications/fa-mmd-qa.html#whatis and http://www.myotonicdystrophy.org/General%20Information.htm
We are hanging in, thanks to everyone’s love and support. Please continue to keep Kayla in your prayers
Love,
Lisa
We feel that Kayla has been put on this earth for a reason and we are not willing to think about life without her right now. So far she has proven to be such a strong fighter that we have no reason to believe that she won’t continue to keep improving and teach us all about the fragility of life and its possibilities.
In the next few weeks we will be faced with making decisions regarding her long term breathing and feeding support including a possible tracheostomy and insertion of a gastrointestinal feeding tube into her stomach.
We will be meeting with the doctors this week to discuss these issues and what the future may hold for Kayla. If you would like more information about Congenital Myotonic Dystrophy, here are a few web links. http://www.mdausa.org/publications/fa-mmd-qa.html#whatis and http://www.myotonicdystrophy.org/General%20Information.htm
We are hanging in, thanks to everyone’s love and support. Please continue to keep Kayla in your prayers
Love,
Lisa
Sunday, September 4, 2005
Still Waiting for Results of the Genetic Tests
Hi, Lisa here! Well, I finally returned home on Thursday night after a long and draining week in the hospital. I won’t bore you with the gory details but basically my placenta adhered to the wall of my uterus and had to be removed by hand in a two and a half hour procedure. The doctors said they had not ever seen a placenta complication like this before. I think I’m trying to break a new record for weird pregnancy complications. I’m pretty exhausted after losing so much blood but I am slowly gaining back my strength.
As far as Kayla’s progress….the doctors suggested we attempt to test Kayla off of her ventilator last week. We were warned to keep our expectations low as it usually takes several attempts for babies to come off of their ventilators before they can successfully breathe on their own.
On Tuesday (8/30/05) at 11:30 a.m. Kayla’s tube was removed and she began breathing on her own for the first time with the assistance of an oxygen nasal tube. She was able to breathe on her own until Thursday (9/1/05) at 3:30 a.m., almost 41 hours! (We have added a new picture in the Photo Gallery) Unfortunately, the last nurse who had Kayla while she was off of the ventilator had her on her back which is most likely why she failed. It is the most difficult position for babies coming off of their ventilators. Kayla’s lungs collapsed during this attempt so we will have to wait until her lungs re-inflate before they attempt to remove her vent again. The doctor will write orders next time to make sure that she is kept on her stomach until she seems strong enough to handle being on her back.
On Tuesday (8/30/05), Kayla was fitted with two foot braces. These will help keep her feet from having ‘foot drop’ related to her muscle weakness. She will be wearing them two hours on and two hours off for the time being.
On Thursday evening, (9/1/05), Kayla set a new record by holding both eyes open for over two hours. To us, this was significant as she has only opened her eyes for several seconds once or twice a day in the past.
On Saturday, (9/3/05). Kayla weighed in at 6 lbs, 6 oz, a gain of 1 lb, 7 oz since her birth. She is now 19 ½ inches long, a gain of 1 ½ inches. GO KAYLA! Jeff and I were able to give Kayla her first real bath which was so fun for the two of us. Kayla was also moved into a new covered crib that will allow us to protect her from the harsh lights in the NICU. We were so relieved that she will finally be able to get some rest.
We are still waiting on her genetic test results to rule out Congenital Myotonic Muscular Dystrophy and expect to get them back this next week. Kayla is only two weeks away from her original due date of 9/24/05 so we are getting closer to her next schedule brain MRI. Waiting has been the hardest part of this whole experience for the two of us but we are finally getting close to possibly getting some answers.
Thanks for hanging in there with us.
Lisa
As far as Kayla’s progress….the doctors suggested we attempt to test Kayla off of her ventilator last week. We were warned to keep our expectations low as it usually takes several attempts for babies to come off of their ventilators before they can successfully breathe on their own.
On Tuesday (8/30/05) at 11:30 a.m. Kayla’s tube was removed and she began breathing on her own for the first time with the assistance of an oxygen nasal tube. She was able to breathe on her own until Thursday (9/1/05) at 3:30 a.m., almost 41 hours! (We have added a new picture in the Photo Gallery) Unfortunately, the last nurse who had Kayla while she was off of the ventilator had her on her back which is most likely why she failed. It is the most difficult position for babies coming off of their ventilators. Kayla’s lungs collapsed during this attempt so we will have to wait until her lungs re-inflate before they attempt to remove her vent again. The doctor will write orders next time to make sure that she is kept on her stomach until she seems strong enough to handle being on her back.
On Tuesday (8/30/05), Kayla was fitted with two foot braces. These will help keep her feet from having ‘foot drop’ related to her muscle weakness. She will be wearing them two hours on and two hours off for the time being.
On Thursday evening, (9/1/05), Kayla set a new record by holding both eyes open for over two hours. To us, this was significant as she has only opened her eyes for several seconds once or twice a day in the past.
On Saturday, (9/3/05). Kayla weighed in at 6 lbs, 6 oz, a gain of 1 lb, 7 oz since her birth. She is now 19 ½ inches long, a gain of 1 ½ inches. GO KAYLA! Jeff and I were able to give Kayla her first real bath which was so fun for the two of us. Kayla was also moved into a new covered crib that will allow us to protect her from the harsh lights in the NICU. We were so relieved that she will finally be able to get some rest.
We are still waiting on her genetic test results to rule out Congenital Myotonic Muscular Dystrophy and expect to get them back this next week. Kayla is only two weeks away from her original due date of 9/24/05 so we are getting closer to her next schedule brain MRI. Waiting has been the hardest part of this whole experience for the two of us but we are finally getting close to possibly getting some answers.
Thanks for hanging in there with us.
Lisa
Wednesday, August 31, 2005
We are Celebratng Our Second Anniversary Today
No major changes today. Lisa continues to improve and may be released from the hospital today or Thursday, baring no other setbacks.
I will be taking a cake down to the hospital today so we all can try and celebrate our 2 year wedding anniversary today, 8/31.
That's all for now...keep up the prayers !
Jeff
I will be taking a cake down to the hospital today so we all can try and celebrate our 2 year wedding anniversary today, 8/31.
That's all for now...keep up the prayers !
Jeff
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