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
Wednesday, August 31, 2005
Tuesday, August 30, 2005
Lisa Had Surgery for Placent Accreta
Yesterday....What an overwhelming day.
Lisa went into surgery Monday afternoon, 8/29 @3:00 pm, for what was to be a quick 15 minute procedure to remove another remaining portion of placenta that was left behind from her C section. Lisa’s Mom and I sat together in the ER waiting room. At 4:30pm, with no word, we became concerned. I checked with the nurse assistant who indicated that they were only halfway finished and the surgery was taking much longer than anticipated. We were told they would call us as soon as surgery was completed.
Finally, at 6:05 pm, nearly 3 hours later, the Dr. entered the waiting area and called us into conference with the updates. The Dr. informed us that Lisa was OK, was in the recovery room, and would remain there for another hour or two before returning back up to her room. Lisa was not coming out of the anesthesia as quickly as anticipated so they were being extra cautious. They also indicated that Lisa had lost more blood in this surgery than during her C section at Kayla’s birth. Lisa lost over half of her blood volume. The doctors were very overwhelmed and amazed at both the size and degree of difficulty in removing the remaining section of placenta. They said that Lisa had something called 'Placenta Accreta' which usually requires a hysterectomy but Lisa spoke with them before she went under and begged that they save her uterus at all costs. They chose to remove Lisa's placenta by hand and that is what ended up taking so long.
As of today, Lisa is now back in her room, very tired, still medicated, but recovering with the help of many pain medications.
As for Kayla … She is now up to 19 ml per hour of Mom’s milk. She is gaining weight and now at 6 lbs. 1oz, up from her original birth weight of 4 lbs. 15 oz. However, Kayla still has yet to make sounds due to the ventilator tube and her eyes have remained closed most of the time, only opening them a few times a day for several seconds.
Please keep up the prayers and messages....thanks,
Jeff
Lisa went into surgery Monday afternoon, 8/29 @3:00 pm, for what was to be a quick 15 minute procedure to remove another remaining portion of placenta that was left behind from her C section. Lisa’s Mom and I sat together in the ER waiting room. At 4:30pm, with no word, we became concerned. I checked with the nurse assistant who indicated that they were only halfway finished and the surgery was taking much longer than anticipated. We were told they would call us as soon as surgery was completed.
Finally, at 6:05 pm, nearly 3 hours later, the Dr. entered the waiting area and called us into conference with the updates. The Dr. informed us that Lisa was OK, was in the recovery room, and would remain there for another hour or two before returning back up to her room. Lisa was not coming out of the anesthesia as quickly as anticipated so they were being extra cautious. They also indicated that Lisa had lost more blood in this surgery than during her C section at Kayla’s birth. Lisa lost over half of her blood volume. The doctors were very overwhelmed and amazed at both the size and degree of difficulty in removing the remaining section of placenta. They said that Lisa had something called 'Placenta Accreta' which usually requires a hysterectomy but Lisa spoke with them before she went under and begged that they save her uterus at all costs. They chose to remove Lisa's placenta by hand and that is what ended up taking so long.
As of today, Lisa is now back in her room, very tired, still medicated, but recovering with the help of many pain medications.
As for Kayla … She is now up to 19 ml per hour of Mom’s milk. She is gaining weight and now at 6 lbs. 1oz, up from her original birth weight of 4 lbs. 15 oz. However, Kayla still has yet to make sounds due to the ventilator tube and her eyes have remained closed most of the time, only opening them a few times a day for several seconds.
Please keep up the prayers and messages....thanks,
Jeff
Monday, August 29, 2005
Lisa's In the Hospital too!
Hi everyone. It's Jeff.
The past few days have been very challenging and tiresome.
On Saturday 8/27 @ at 2pm, Lisa began complaining of sever stomach pains. I took her to the Urgent Care at Sutter Hospital here in Roseville by our house. At 4pm, they informed Lisa that she was 5 cm dilated as her body was attempting to expel some remaining matter from her C section of 4 weeks ago. She was immediately sent to the Emergency Room where they performed a general procedure to help remove some placental matter.
After several hours in ER at Roseville, @11:00pm Sat. 8/27 night, they informed us Lisa needed to be admitted. We then requested a transfer by ambulance from Sutter Roseville to Sutter Memorial downtown so Lisa could be in the same hospital as Kayla so that she could still feed her. She spent the next 3 hours in that ER Room from 12 am-3am, and then finally to a room at 3:30am Sunday, 8/28 morning. Her Mom & I spent a night with Lisa her in her room. They placed Lisa on IV’s to help the matter removed itself and some antibiotics to fight off if there should be any infection. We were told she would probably be released on Mon. 8/29 afternoon.
Unfortunately, it’s now 2:00 pm Monday 8/29, and Lisa’s ultrasound this morning has revealed a large portion of placenta is still inside and needs to be surgically removed. They will be performing an immediate surgery on Lisa at 3:00pm today.
Please pray for Lisa's well being through this surgery as well as continued prayers to our little Kayla.
Thanks for everyone's continued prayers, messages, love, and offers for support. It means the world to us right now!
Jeff
The past few days have been very challenging and tiresome.
On Saturday 8/27 @ at 2pm, Lisa began complaining of sever stomach pains. I took her to the Urgent Care at Sutter Hospital here in Roseville by our house. At 4pm, they informed Lisa that she was 5 cm dilated as her body was attempting to expel some remaining matter from her C section of 4 weeks ago. She was immediately sent to the Emergency Room where they performed a general procedure to help remove some placental matter.
After several hours in ER at Roseville, @11:00pm Sat. 8/27 night, they informed us Lisa needed to be admitted. We then requested a transfer by ambulance from Sutter Roseville to Sutter Memorial downtown so Lisa could be in the same hospital as Kayla so that she could still feed her. She spent the next 3 hours in that ER Room from 12 am-3am, and then finally to a room at 3:30am Sunday, 8/28 morning. Her Mom & I spent a night with Lisa her in her room. They placed Lisa on IV’s to help the matter removed itself and some antibiotics to fight off if there should be any infection. We were told she would probably be released on Mon. 8/29 afternoon.
Unfortunately, it’s now 2:00 pm Monday 8/29, and Lisa’s ultrasound this morning has revealed a large portion of placenta is still inside and needs to be surgically removed. They will be performing an immediate surgery on Lisa at 3:00pm today.
Please pray for Lisa's well being through this surgery as well as continued prayers to our little Kayla.
Thanks for everyone's continued prayers, messages, love, and offers for support. It means the world to us right now!
Jeff
Saturday, August 27, 2005
Kayla's Muscles Are Getting Rigid
We are sorry that we haven’t been adding updates for the last several days but we have been very overwhelmed after several long discussions with the doctors regarding Kayla’s progress.
Kayla’s vital signs have been stable for the past few days. She has increased her milk intake and is successfully processing it. However, the doctors are still very concerned with a number of issues including her inability to be weaned off the ventilator. They have let us know that her breathing tube can only last so long and if she is still on the vent by the time she reaches her original due date of 9/18 then they will have to consider putting a tracheotomy tube in her throat to connect the ventilator. We are hoping and praying that she can successfully get herself off of the vent before that time.
The doctors are also concerned that Kayla does not keep her eyes open for more than a few minutes a day. Their biggest concern is still regarding her muscle tone. What we have felt as an improvement in her tone over the last few weeks is now being defined by the physical therapist as muscle rigidity and stiffness. She is unable at times to fully extend her arms and has recently started having muscle twitches. These changes in her muscle tone are very concerning since they may point to a more serious problem, a brain injury. The doctor’s all feel that the genetic tests being done to rule out muscular dystrophy and other muscle disorders will likely come back negative at this point. The doctor’s plan for the next few weeks is to 1) allow Kayla to rest and grow, 2) perform a muscle biopsy of her thigh muscle tissue and 3) do a second brain MRI to compare her brain changes to the first MRI. We are hopeful that we will finally get some answers back in the next few weeks about the source of Kayla’s health issues.
My mom, “Grandma Jane”, gave Jeff and me a beautiful poem the other day that has really touched us deeply and we wanted to share it with you. It was written by Ann Weems in 1980.
For our sweet baby Kayla
If I could, I’d write for you a rainbow
And splash it with all the colors of God
And hang it in the window of your soul
So that each new God’s morning
Your eyes would open first
To Hope and Promise.
If I could, I’d wipe away your tears
And hold you close forever in shalom
But God never promised
I could write a rainbow,
Never promised I could suffer for you,
Only promised I could love you.
That I do.
We love you with all of our hearts,
Mom & Dad
Kayla’s vital signs have been stable for the past few days. She has increased her milk intake and is successfully processing it. However, the doctors are still very concerned with a number of issues including her inability to be weaned off the ventilator. They have let us know that her breathing tube can only last so long and if she is still on the vent by the time she reaches her original due date of 9/18 then they will have to consider putting a tracheotomy tube in her throat to connect the ventilator. We are hoping and praying that she can successfully get herself off of the vent before that time.
The doctors are also concerned that Kayla does not keep her eyes open for more than a few minutes a day. Their biggest concern is still regarding her muscle tone. What we have felt as an improvement in her tone over the last few weeks is now being defined by the physical therapist as muscle rigidity and stiffness. She is unable at times to fully extend her arms and has recently started having muscle twitches. These changes in her muscle tone are very concerning since they may point to a more serious problem, a brain injury. The doctor’s all feel that the genetic tests being done to rule out muscular dystrophy and other muscle disorders will likely come back negative at this point. The doctor’s plan for the next few weeks is to 1) allow Kayla to rest and grow, 2) perform a muscle biopsy of her thigh muscle tissue and 3) do a second brain MRI to compare her brain changes to the first MRI. We are hopeful that we will finally get some answers back in the next few weeks about the source of Kayla’s health issues.
My mom, “Grandma Jane”, gave Jeff and me a beautiful poem the other day that has really touched us deeply and we wanted to share it with you. It was written by Ann Weems in 1980.
For our sweet baby Kayla
If I could, I’d write for you a rainbow
And splash it with all the colors of God
And hang it in the window of your soul
So that each new God’s morning
Your eyes would open first
To Hope and Promise.
If I could, I’d wipe away your tears
And hold you close forever in shalom
But God never promised
I could write a rainbow,
Never promised I could suffer for you,
Only promised I could love you.
That I do.
We love you with all of our hearts,
Mom & Dad
Tuesday, August 23, 2005
Kayla Opened Both of Her Eyes for the First Time
The last couple of days for Kayla have been pretty uneventful which is great. Her vital signs have remained pretty steady so hopefully they will try and start weaning her ventilator settings some more this week.
On Saturday (8/20) Kayla opened both of her eyes for the first time (we added a new photo). Her eyes are a beautiful hazel blue although who knows what color they will end up being. It was such a sweet moment to talk to her and have her look back at you like she understood what you were saying. Both my dad and sister were able to hold Kayla for the first time on Saturday.
On Sunday (8/21) Kayla slept for most of the day. My nieces Maya & Noelle were able to look at Kayla for the first time but only through a window. Visitors under the age of 12 have to be a sibling of Kayla. Even though it was hard for them to see her very well, they were still excited about seeing their new cousin for the first time.
Yesterday (8/22) Kayla slept most of the day while my mom and I were visiting. Just before we arrived she had finished physical therapy and seemed pretty worn out afterwards. She finally woke up in the evening when Jeff was visiting with her. Jeff said it looked like Kayla was trying to talk to him. She kept opening her mouth and sticking her tongue out. Too bad Jeff didn’t have the camera with him! Last night Kayla weighed in at 5 lbs. 15.5 oz. She has gained a full pound since she was born! Hopefully her weight will begin increasing faster now that she is finally getting milk. She also gained 1 ¼ inches in height and is now 19 ¼ inches tall. Kayla’s feedings were increased to 18 ml/hr and she seems to be tolerating the feedings well. The doctors have said that they want to keep feeding her through the tube until she gains some more weight but will hopefully try and test her stomach again when she is closer to full term in 4 weeks.
We are still waiting to hear back on her genetic testing but are hoping the results will be in this week. Please send some prayers for little Kayla that the tests come back negative.
All of our love,
Lisa
On Saturday (8/20) Kayla opened both of her eyes for the first time (we added a new photo). Her eyes are a beautiful hazel blue although who knows what color they will end up being. It was such a sweet moment to talk to her and have her look back at you like she understood what you were saying. Both my dad and sister were able to hold Kayla for the first time on Saturday.
On Sunday (8/21) Kayla slept for most of the day. My nieces Maya & Noelle were able to look at Kayla for the first time but only through a window. Visitors under the age of 12 have to be a sibling of Kayla. Even though it was hard for them to see her very well, they were still excited about seeing their new cousin for the first time.
Yesterday (8/22) Kayla slept most of the day while my mom and I were visiting. Just before we arrived she had finished physical therapy and seemed pretty worn out afterwards. She finally woke up in the evening when Jeff was visiting with her. Jeff said it looked like Kayla was trying to talk to him. She kept opening her mouth and sticking her tongue out. Too bad Jeff didn’t have the camera with him! Last night Kayla weighed in at 5 lbs. 15.5 oz. She has gained a full pound since she was born! Hopefully her weight will begin increasing faster now that she is finally getting milk. She also gained 1 ¼ inches in height and is now 19 ¼ inches tall. Kayla’s feedings were increased to 18 ml/hr and she seems to be tolerating the feedings well. The doctors have said that they want to keep feeding her through the tube until she gains some more weight but will hopefully try and test her stomach again when she is closer to full term in 4 weeks.
We are still waiting to hear back on her genetic testing but are hoping the results will be in this week. Please send some prayers for little Kayla that the tests come back negative.
All of our love,
Lisa
Friday, August 19, 2005
Kayla is Begining to Process Food
On Wednesday (8/17) Kayla began to show some signs of recovering from her infection although she was still lethargic and her face was still pretty swollen. She was finally able to begin processing my breast milk and was able to have the amount increased to 2 ml/hr by the end of the day. The doctors are still bypassing her stomach and feeding her through a tube directly into her lower bowel but hopefully, they will be testing her stomach again soon as she can’t be fed through the tube forever.
Thursday (8/18) was a turning point for Kayla. Her food was increased to 4 ml/hr and they began turning down the supplemental nutrition that she has been fed through her IV’s for the last 3 weeks. She had an x-ray of her stomach which showed no abnormalities and an x-ray of her lungs which were clear and still fully inflated. Both my mom and I were able to hold Kayla for extended periods during the day. Kayla was tested off of her bed warmer several times and was able to hold her own temperature so they turned the heater off permanently. They will hopefully be moving Kayla to a crib in the next few days which will be great since we can cover it and protect her from the harsh lights that she has been exposed to 24/7 since she was born. Kayla also had her first sponge bath and looked so cute and clean! Her facial swelling seemed to finally be going down. I added a new picture to the photo gallery (the last picture) that really shows a big difference in her swelling.
Today (8/19) Kayla had her best day ever and we are hopeful that this means the beginning of real progress. One of Kayla’s IV’s was able to be removed and they are hoping to remove her last IV in the next few days after she has finished her final dose of antibiotics. The doctors decided that they did NOT need to put another Broviac catheter in her head so she will NOT have to undergo more surgery this week. Phew! They began the process of removing her life support systems and she seems to be handling the changes well. She is still intubated and breathing with the assistance of a ventilator but they are lowering her levels daily. Kayla’s food was increased over the day to 9 ml/hr and she seemed to be tolerating it well. We are still waiting on the latest set of genetic tests to come back regarding her muscle weakness. We expect to get some information in the next week or so. Unfortunately, if the tests come back negative, they will have to do a muscle biopsy on Kayla. It is a pretty invasive procedure where they remove a portion of her muscle tissue from her thigh and test it for a number of disorders. The doctors have decided to wait another week or two for her follow-up brain MRI & CT scans to make sure that there is enough time to show the changes in her brain development.
Jeff, my mom and I were all able to hold Kayla again today. She had her right eye open for long periods of time during the day. We were also able to dress Kayla for the first time today and she looked so adorable in her pink onesie and booties.
Jeff and I are hanging in there thanks to all of the support and love that have been coming our way. We feel so grateful to have all of you in our lives.
All the best,
Lisa
Thursday (8/18) was a turning point for Kayla. Her food was increased to 4 ml/hr and they began turning down the supplemental nutrition that she has been fed through her IV’s for the last 3 weeks. She had an x-ray of her stomach which showed no abnormalities and an x-ray of her lungs which were clear and still fully inflated. Both my mom and I were able to hold Kayla for extended periods during the day. Kayla was tested off of her bed warmer several times and was able to hold her own temperature so they turned the heater off permanently. They will hopefully be moving Kayla to a crib in the next few days which will be great since we can cover it and protect her from the harsh lights that she has been exposed to 24/7 since she was born. Kayla also had her first sponge bath and looked so cute and clean! Her facial swelling seemed to finally be going down. I added a new picture to the photo gallery (the last picture) that really shows a big difference in her swelling.
Today (8/19) Kayla had her best day ever and we are hopeful that this means the beginning of real progress. One of Kayla’s IV’s was able to be removed and they are hoping to remove her last IV in the next few days after she has finished her final dose of antibiotics. The doctors decided that they did NOT need to put another Broviac catheter in her head so she will NOT have to undergo more surgery this week. Phew! They began the process of removing her life support systems and she seems to be handling the changes well. She is still intubated and breathing with the assistance of a ventilator but they are lowering her levels daily. Kayla’s food was increased over the day to 9 ml/hr and she seemed to be tolerating it well. We are still waiting on the latest set of genetic tests to come back regarding her muscle weakness. We expect to get some information in the next week or so. Unfortunately, if the tests come back negative, they will have to do a muscle biopsy on Kayla. It is a pretty invasive procedure where they remove a portion of her muscle tissue from her thigh and test it for a number of disorders. The doctors have decided to wait another week or two for her follow-up brain MRI & CT scans to make sure that there is enough time to show the changes in her brain development.
Jeff, my mom and I were all able to hold Kayla again today. She had her right eye open for long periods of time during the day. We were also able to dress Kayla for the first time today and she looked so adorable in her pink onesie and booties.
Jeff and I are hanging in there thanks to all of the support and love that have been coming our way. We feel so grateful to have all of you in our lives.
All the best,
Lisa
Wednesday, August 17, 2005
My Human Pin Cushion :(
On Monday (8/15), Kayla began putting her hands to her mouth and trying to suck them. The Physical Therapist said that this is a huge improvement for little Kayla. She also agreed with us that her muscles seemed a little stronger.
On Tuesday (8/16), Kayla had another hard day. She started the day with a stomach ultrasound to check her liver for possible inflammation caused by the IV fluid they have been using to feed her. They will most likely have to stop using the fluid soon as it tends to cause liver damage with extended use. We are still waiting on the results of the ultrasound. Just after the ultrasound the doctor did a lumbar puncture (spinal tap) on Kayla to test her spinal fluid for infection. The initial results looked good but we will have to wait for a few days for the final report. Kayla also needed to have another IV put in as the one in her hand blew out again. Her little veins are so tiny that they are having a hard time keeping them in for more than a day. If she recovers from her infection soon, they will surgically put another catheter in her head so they can take out the other IV lines and hopefully stop sticking her with needles every day. They will have to wait at least 10 days from the time they started her antibiotics to make sure that the catheter doesn’t get infected like the first one. We are praying that she gets through this infection quickly.
Late yesterday afternoon, Kayla was taken down to radiology to have her feeding tube inserted into her lower bowel with an x-ray guided procedure. The procedure was successful so they began feeding Kayla milk again but only 1 ml/hour. They want to be conservative this time to give her body time to begin processing it. Her respiratory situation still hasn’t changed any so she is still intubated and being assisted by a ventilator.
Overall, Kayla has been very weak and lethargic over the last 24 hours but we aren’t surprised as she is probably exhausted from all of the procedures and testing yesterday. She is still very swollen and retaining fluid, especially in her face. We are hoping after she has had a chance to rest for a few days that we will begin to see some improvements in her overall health but especially in her muscle strength.
We are off to the hospital but will write more soon.
Love,
Lisa
On Tuesday (8/16), Kayla had another hard day. She started the day with a stomach ultrasound to check her liver for possible inflammation caused by the IV fluid they have been using to feed her. They will most likely have to stop using the fluid soon as it tends to cause liver damage with extended use. We are still waiting on the results of the ultrasound. Just after the ultrasound the doctor did a lumbar puncture (spinal tap) on Kayla to test her spinal fluid for infection. The initial results looked good but we will have to wait for a few days for the final report. Kayla also needed to have another IV put in as the one in her hand blew out again. Her little veins are so tiny that they are having a hard time keeping them in for more than a day. If she recovers from her infection soon, they will surgically put another catheter in her head so they can take out the other IV lines and hopefully stop sticking her with needles every day. They will have to wait at least 10 days from the time they started her antibiotics to make sure that the catheter doesn’t get infected like the first one. We are praying that she gets through this infection quickly.
Late yesterday afternoon, Kayla was taken down to radiology to have her feeding tube inserted into her lower bowel with an x-ray guided procedure. The procedure was successful so they began feeding Kayla milk again but only 1 ml/hour. They want to be conservative this time to give her body time to begin processing it. Her respiratory situation still hasn’t changed any so she is still intubated and being assisted by a ventilator.
Overall, Kayla has been very weak and lethargic over the last 24 hours but we aren’t surprised as she is probably exhausted from all of the procedures and testing yesterday. She is still very swollen and retaining fluid, especially in her face. We are hoping after she has had a chance to rest for a few days that we will begin to see some improvements in her overall health but especially in her muscle strength.
We are off to the hospital but will write more soon.
Love,
Lisa
Monday, August 15, 2005
Kayla is Showing Signs of Muscle Improvement
It has been a weekend full of ups and downs for sweet little Kayla.
On Saturday (8/13), Kayla’s lungs finally cleared up and were fully expanded. We were so excited by this news! Her feeding tube was still not in the right place to begin her feedings but we hope, in the next few days, it will work its way into place.
On Sunday (8/14), Kayla’s lungs had continued to improve so the doctor took her off of the jet ventilator and put her back on her old ventilator. What a relief! Unfortunately, not long after the ventilator was removed, they discovered that the catheter that they had put into her head during surgery on Wednesday had gotten severely infected and had to be removed immediately. It was replaced by two IV’s in her hand and foot. I sat with her through the procedures and was horrified as they attempted to find a vein to use. After 6 attempts to put the IV’s in, I had to leave the room. Poor Kayla is becoming a human pin cushion. Right after her IV’s were in place, the doctor said she would also need to do another spinal tap in a few days to see if the infection had gotten into her spinal fluid. Ugh! They also received some lab results yesterday which showed that Kayla had a super low red blood cell count that required her to have a blood transfusion immediately. They gave her 50 ccs of blood starting last night. It just doesn’t seem fair to have to go through so much at such a young age. I wish there was something that I could do to protect her from all of this pain but I know that my hands are tied. All I can do is be there to hold her hand and let her know I’m there. I have never felt more helpless in my life!
On a positive note, Kayla seemed to show signs of improvement in her muscle weakness yesterday. When I was holding her hand during the IV procedures, she was squeezing my finger really hard. She was also pulling her arm back down when I lifted it up. This is more reaction then I’ve seen from her since she was born. I am eager to get to the hospital this morning to speak with her primary care doctor about this change. I wonder if some of her muscle issues have been due to the infection that she is recovering from. Hopefully, we will continue to see improvement in this area as this is the doctor’s biggest concern still for Kayla’s long term prognosis.
One last thing, last night when Jeff arrived at the hospital, Kayla opened her right eye for him. She had done that for me early in the week as well. It was a very tender moment for Jeff. There is something about seeing her eyes that made us both feel more hopeful that she will recover soon. So far, these are the only two times that she has opened her eyes according to the nurses.
Thank you again for all of your messages. Jeff and I have been so touched by each of them. We sit down each night to read them over and over again. They really help to keep us going on difficult days and help us to maintain a strong sense of hope for Kayla’s quick recovery.
Love,
Lisa, Jeff & Kayla
On Saturday (8/13), Kayla’s lungs finally cleared up and were fully expanded. We were so excited by this news! Her feeding tube was still not in the right place to begin her feedings but we hope, in the next few days, it will work its way into place.
On Sunday (8/14), Kayla’s lungs had continued to improve so the doctor took her off of the jet ventilator and put her back on her old ventilator. What a relief! Unfortunately, not long after the ventilator was removed, they discovered that the catheter that they had put into her head during surgery on Wednesday had gotten severely infected and had to be removed immediately. It was replaced by two IV’s in her hand and foot. I sat with her through the procedures and was horrified as they attempted to find a vein to use. After 6 attempts to put the IV’s in, I had to leave the room. Poor Kayla is becoming a human pin cushion. Right after her IV’s were in place, the doctor said she would also need to do another spinal tap in a few days to see if the infection had gotten into her spinal fluid. Ugh! They also received some lab results yesterday which showed that Kayla had a super low red blood cell count that required her to have a blood transfusion immediately. They gave her 50 ccs of blood starting last night. It just doesn’t seem fair to have to go through so much at such a young age. I wish there was something that I could do to protect her from all of this pain but I know that my hands are tied. All I can do is be there to hold her hand and let her know I’m there. I have never felt more helpless in my life!
On a positive note, Kayla seemed to show signs of improvement in her muscle weakness yesterday. When I was holding her hand during the IV procedures, she was squeezing my finger really hard. She was also pulling her arm back down when I lifted it up. This is more reaction then I’ve seen from her since she was born. I am eager to get to the hospital this morning to speak with her primary care doctor about this change. I wonder if some of her muscle issues have been due to the infection that she is recovering from. Hopefully, we will continue to see improvement in this area as this is the doctor’s biggest concern still for Kayla’s long term prognosis.
One last thing, last night when Jeff arrived at the hospital, Kayla opened her right eye for him. She had done that for me early in the week as well. It was a very tender moment for Jeff. There is something about seeing her eyes that made us both feel more hopeful that she will recover soon. So far, these are the only two times that she has opened her eyes according to the nurses.
Thank you again for all of your messages. Jeff and I have been so touched by each of them. We sit down each night to read them over and over again. They really help to keep us going on difficult days and help us to maintain a strong sense of hope for Kayla’s quick recovery.
Love,
Lisa, Jeff & Kayla
Saturday, August 13, 2005
Kayla's Lungs are Almost Re-Inflated
We have been getting updates from the nurses throughout the night that Kayla's vital signs are beginning to improve. She had an x-ray of her lungs this morning that show that the new ventilator and antibiotics are finally working. Kayla's lungs are almost re-inflated except for one small area near her heart. It turned out that she got an infection that they are still working on identifying and that is what caused her platelet levels to drop and her lungs to collapse. They gave her a broad spectrum antibiotic that covers a large number of infections and it appears to be working. She will remain on the new ventilator until her lungs get a little stronger so unfortunately will also remain sedated and we will not be able to hold her for now. At least she isn't in any pain.
They began placing her feeding tube into her stomach yesterday but it may take a few days for it to work its way into her lower bowel. Once it is properly placed they will begin feedings again. Hopefully once she is able to take the breast milk this will help her to begin fighting off any other potential bacteria that she is exposed to in the NICU.
We are heading out this morning to go visit with Kayla but will write more as things progress.
Love,
Lisa, Jeff & Kayla
They began placing her feeding tube into her stomach yesterday but it may take a few days for it to work its way into her lower bowel. Once it is properly placed they will begin feedings again. Hopefully once she is able to take the breast milk this will help her to begin fighting off any other potential bacteria that she is exposed to in the NICU.
We are heading out this morning to go visit with Kayla but will write more as things progress.
Love,
Lisa, Jeff & Kayla
Thursday, August 11, 2005
Latest Genetic Test is Negative
It has been a whirlwind over the past few days so we are just finding time to update you on Kayla's progress.
Kayla began physical therapy on Sunday afternoon (8/7) to try and get her muscles moving. She has not responded to the therapy yet but we are hopeful that it will help to strengthen her muscles over time.
Jeff was finally able to hold Kayla on Sunday night. It was such a sweet moment to see the two of them together. Even though she is almost 5 lbs., she looked so tiny in his arms.
On Tuesday (8/9), we got news that one of the genetic tests came back negative – thank God. That night she began respiratory therapy to help strengthen her lungs which will hopefully help to keep her from getting pneumonia which is common for babies who are intubated.
On Wednesday (8/10), Kayla had surgery to put in a catheter behind her right ear. This allowed the doctors to remove her umbilical arterial line. The surgery went well and they said that this would allow us to hold her without significant risk. However, we had to leave Kayla’s bedside the rest of the evening because of the death of another infant in the unit, so we were unable to hold her. It was a very sad night for everyone, but especially for the family of the baby girl who passed. It really brought home the reality of how sick the babies in this unit are.
Today, Kayla had an extremely rough day. Her left lung collapsed this morning, her blood platelet count dropped to significantly low levels and she had to be transfused. They also heard a heart mummer which they are monitoring. We should get results back on her EKG in the morning. Tonight her top right lung collapsed and her CO2 levels skyrocketed. She had to be switched to a more powerful ventilator which breaths 420 breaths per minute for her. This required them to fully sedate Kayla. In the last hour her vital signs have been a little more stable so we are hopeful that she will begin to improve and regain use of her lungs.
Kayla is still unable to digest food which is very discouraging. They are giving her lipids and fluid through an IV to try and maintain her weight but are hoping that she will eventually be able to process the milk. They are considering running a weighted tube directly into her lower bowel to see if that will help.
Thank you again for all of your messages, prayers and support for our family during this difficult time. We ask that you please keep our sweet little Kayla in your prayers.
Love,
Lisa, Jeff & Kayla
Kayla began physical therapy on Sunday afternoon (8/7) to try and get her muscles moving. She has not responded to the therapy yet but we are hopeful that it will help to strengthen her muscles over time.
Jeff was finally able to hold Kayla on Sunday night. It was such a sweet moment to see the two of them together. Even though she is almost 5 lbs., she looked so tiny in his arms.
On Tuesday (8/9), we got news that one of the genetic tests came back negative – thank God. That night she began respiratory therapy to help strengthen her lungs which will hopefully help to keep her from getting pneumonia which is common for babies who are intubated.
On Wednesday (8/10), Kayla had surgery to put in a catheter behind her right ear. This allowed the doctors to remove her umbilical arterial line. The surgery went well and they said that this would allow us to hold her without significant risk. However, we had to leave Kayla’s bedside the rest of the evening because of the death of another infant in the unit, so we were unable to hold her. It was a very sad night for everyone, but especially for the family of the baby girl who passed. It really brought home the reality of how sick the babies in this unit are.
Today, Kayla had an extremely rough day. Her left lung collapsed this morning, her blood platelet count dropped to significantly low levels and she had to be transfused. They also heard a heart mummer which they are monitoring. We should get results back on her EKG in the morning. Tonight her top right lung collapsed and her CO2 levels skyrocketed. She had to be switched to a more powerful ventilator which breaths 420 breaths per minute for her. This required them to fully sedate Kayla. In the last hour her vital signs have been a little more stable so we are hopeful that she will begin to improve and regain use of her lungs.
Kayla is still unable to digest food which is very discouraging. They are giving her lipids and fluid through an IV to try and maintain her weight but are hoping that she will eventually be able to process the milk. They are considering running a weighted tube directly into her lower bowel to see if that will help.
Thank you again for all of your messages, prayers and support for our family during this difficult time. We ask that you please keep our sweet little Kayla in your prayers.
Love,
Lisa, Jeff & Kayla
Sunday, August 7, 2005
I Held Kayla For the First Time
On Friday night (8/5) the nurse informed Jeff and me that they stopped Kayla's feedings again due to a backup of food in her stomach. She has not been able to digest food since she was born. They did a barium contrast study on her a few hours earlier and a follow up x-ray that showed her upper gastro-intestinal (GI) tract was not processing her food at all. The doctors ordered a drug to try and stimulate her stomach so they will start feedings again (only 1 tsp/6 hours) and will wait to see how she tolerates it. She still has jaundice pretty badly so they are hoping that she can start processing the breast milk soon which will help the jaundice resolve itself. They are keeping her under a UV (bilirubin) light to treat the jaundice until she is able to eat.
Kayla is still unable to breath on her own but is showing some signs of respiratory improvement. She is still being assisted by a ventilator but hopefully the doctors will begin testing her off of the ventilator soon. Her eyes have not opened since she was born and her face is swollen from the excess fluid in her body. Hopefully, the swelling should go down once she is able to process food again. Kayla's neurologist has informed us that he doesn't believe that Kayla has a genetic disorder. He believes that Kayla's issues stem from her brain and he believes that she has 'central hypotonia' which means that she likely had a brain injury in utero. He believes that Kayla may have had a slow, cronic depravation of oxygen. Jeff and I are so devastated but are holding out hope that the doctors will learn more over the next few days and weeks.
I had a huge milestone on Friday night! The nurse let me hold Kayla for the first time since she was born. It was a little scary at first because she has an arterial line in her umbilical cord that if moved in the wrong way, could cause her to bleed severely and could possibly be fatal. I only felt comfortable because the nurse has worked in the same Neonatal ICU for the last 25 years and was very experienced. She said holding her was good for both of us. Finally holding Kayla for the first time was so magical. I have heard that the love you feel when you first hold your child is indescribable and now I completely understand. It was the best moment of my life! (I added a picture to the photo gallery) Unfortunately, Jeff was starting to feel like he was coming down with something so he stayed home that night. Hopefully, Jeff will be able to hold her sometime very soon.
Yesterday, Saturday (8/6), my Dad, sister Kathy, and my two nieces, Maya and Noelle, left to return back home to Santa Cruz. They were all here to help us for the past week. My Mom will remain here with us at our home in Rocklin until things settle down a bit.
After visiting with Kayla for several hours yesterday (8/6) Jeff and I both feel like she is beginning to move a little more and is starting to show signs of muscle resistance. The doctors still want to see more significant movements before they can say she is improving in any way.
As of today, Sunday (8/7), we haven't received any more results from her outstanding tests so we are still playing the waiting game.
We will continue to update you as things change.
All our love,
Lisa, Jeff & Kayla Vittek
Kayla is still unable to breath on her own but is showing some signs of respiratory improvement. She is still being assisted by a ventilator but hopefully the doctors will begin testing her off of the ventilator soon. Her eyes have not opened since she was born and her face is swollen from the excess fluid in her body. Hopefully, the swelling should go down once she is able to process food again. Kayla's neurologist has informed us that he doesn't believe that Kayla has a genetic disorder. He believes that Kayla's issues stem from her brain and he believes that she has 'central hypotonia' which means that she likely had a brain injury in utero. He believes that Kayla may have had a slow, cronic depravation of oxygen. Jeff and I are so devastated but are holding out hope that the doctors will learn more over the next few days and weeks.
I had a huge milestone on Friday night! The nurse let me hold Kayla for the first time since she was born. It was a little scary at first because she has an arterial line in her umbilical cord that if moved in the wrong way, could cause her to bleed severely and could possibly be fatal. I only felt comfortable because the nurse has worked in the same Neonatal ICU for the last 25 years and was very experienced. She said holding her was good for both of us. Finally holding Kayla for the first time was so magical. I have heard that the love you feel when you first hold your child is indescribable and now I completely understand. It was the best moment of my life! (I added a picture to the photo gallery) Unfortunately, Jeff was starting to feel like he was coming down with something so he stayed home that night. Hopefully, Jeff will be able to hold her sometime very soon.
Yesterday, Saturday (8/6), my Dad, sister Kathy, and my two nieces, Maya and Noelle, left to return back home to Santa Cruz. They were all here to help us for the past week. My Mom will remain here with us at our home in Rocklin until things settle down a bit.
After visiting with Kayla for several hours yesterday (8/6) Jeff and I both feel like she is beginning to move a little more and is starting to show signs of muscle resistance. The doctors still want to see more significant movements before they can say she is improving in any way.
As of today, Sunday (8/7), we haven't received any more results from her outstanding tests so we are still playing the waiting game.
We will continue to update you as things change.
All our love,
Lisa, Jeff & Kayla Vittek
Friday, August 5, 2005
Kayla's Health Issue Beyond Issues of Prematurity
First of all, Jeff and I would like to thank you from the bottom of our hearts for all of your messages about our sweet little girl, Kayla. Each message has lifted us up and has provided us the strength to get through the next day. We understand that this is not the most personalized way to get in touch with us; however it is very crucial for us to have the free time to work with the doctors and be by Kayla's bedside right now. Thank you for understanding and for respecting our privacy. As we have time, we will be in touch with you.
The doctors have informed us that Kayla's health issues go beyond the normal issues of a premature baby. Yesterday, we met with her Neurologist, who had some finding from her brain MRI & CAT Scan. Unfortunately, the news was not very good but we are hopeful that she will prove the doctors wrong somehow. The doctors will continue progressive brain scans over the next few weeks to monitor her brain development and watch for changes in some abnormalities that they have discovered.
God bless,
Lisa, Jeff & Kayla Vittek
The doctors have informed us that Kayla's health issues go beyond the normal issues of a premature baby. Yesterday, we met with her Neurologist, who had some finding from her brain MRI & CAT Scan. Unfortunately, the news was not very good but we are hopeful that she will prove the doctors wrong somehow. The doctors will continue progressive brain scans over the next few weeks to monitor her brain development and watch for changes in some abnormalities that they have discovered.
Kayla's neonatalogist ordered a spinal tap to help with her assessment. I saw my sister Kathy do a spinal tap on a baby a long time ago and almost passed out watching the procedure. It is so hard to think about sweet little Kayla being stuck with so many needles. Kayla has blood taken several times a day now to test for various things. I wish I could do something to protect her from all of this. Kayla's doctor confirmed that she has jaundice and they will begin UV light treatments immediately.
God bless,
Lisa, Jeff & Kayla Vittek
Wednesday, August 3, 2005
Kayla's Having an MRI
Jeff and I have spent the last few days meeting with all of Kayla's doctors including an ophthalmologist, neurologist, geneticist, and many other specialists who have been brought in to assess Kayla. She is still not able to breathe or eat on her own and remains in a hypotonic (floppy) state. The doctors have advised us that the road ahead may be very long before we know more about her condition. Unfortunately, she is not making much improvement and the doctors seem very concerned for her long term prognosis.
Today she underwent further tests and a brain MRI which we hope will give us some answers. Just after Kayla came out of her MRI her breathing became labored and an immediate X-Ray was ordered. It showed that her breathing tube was too far down her throat. Once they pulled the tube out just a bit, her breathing returned to normal. We were so scared but were so happy that she was doing better.
Much love,
Lisa, Jeff & Kayla Vittek
Today she underwent further tests and a brain MRI which we hope will give us some answers. Just after Kayla came out of her MRI her breathing became labored and an immediate X-Ray was ordered. It showed that her breathing tube was too far down her throat. Once they pulled the tube out just a bit, her breathing returned to normal. We were so scared but were so happy that she was doing better.
Much love,
Lisa, Jeff & Kayla Vittek
Tuesday, August 2, 2005
Baby Kayla's Journey Begins
Kayla Michele Vittek was born at Sutter Memorial Hospital in Sacramento, CA on Thursday, July 28th, 2005 at 1:38 PM by an emergency Cesarean section. She weighed 4 lbs., 15 oz at birth and was 18 inches long.
We are asking for your prayers for our little girl as she struggles to hang onto each breath of life.
I have returned home from the hospital and am recovering quickly from my surgery. I will probably be spending most of the next few months visiting with Kayla in the hospital. As of now we haven't even been able to hold her so we are staying by her bedside to let her know that we are here for her when she awakens and hopefully finally opens her eyes.
Jeff has returned to work but will be commuting to the hospital each night to be with the two of us.
We really appreciate the support, love and prayers that have been coming in and hope that you understand that we are unable to keep everyone updated by phone. Please bookmark this page for future updates and please leave us a message by clicking the 'Post a Comment' link below .
Thanks for your understanding and respecting our privacy at this difficult time.
Lisa, Jeff & Kayla
My water broke early due to an increased amount of amniotic fluid and after an ultrasound of the baby, the doctors scheduled an immediate C-Section saying that the baby wasn't moving at all in the half hour ultrasound. Unfortunately, Kayla was born 8 weeks premature, showed signs of fetal distress and was not able to breath on her own at birth. She was revived and had to be intubated and put on a mechanical ventilator. The doctors and nurses rushed Kayla out of the delivery room without me being able to see her. I told Jeff and my mother to follow the doctors to make sure that Kayla was ok. She was immediately rushed to the Neonatal Intensive Care Unit (NICU) (aka: Special Care Nursery (SCN)), where she is currently undergoing extensive testing and special care for what they are calling 'Floppy Baby Syndrome'. Kayla was not moving at all and had almost no muscle tone. Kayla's red blood cell count has come back too high so the doctors will also be testing her for jaundice.
Kayla at birth - July 28, 2005 1:38 pm
We are asking for your prayers for our little girl as she struggles to hang onto each breath of life.
I have returned home from the hospital and am recovering quickly from my surgery. I will probably be spending most of the next few months visiting with Kayla in the hospital. As of now we haven't even been able to hold her so we are staying by her bedside to let her know that we are here for her when she awakens and hopefully finally opens her eyes.
Jeff has returned to work but will be commuting to the hospital each night to be with the two of us.
We really appreciate the support, love and prayers that have been coming in and hope that you understand that we are unable to keep everyone updated by phone. Please bookmark this page for future updates and please leave us a message by clicking the 'Post a Comment' link below .
Thanks for your understanding and respecting our privacy at this difficult time.
Lisa, Jeff & Kayla
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