Alexis got to have her Daddy all to herself this weekend. He came up Friday and stayed through Sunday so I could go home to see the twins Saturday through Sunday. It was nice to be home for the first time in 2 1/2 weeks, but those 24 hours went by very quickly.
As I'm writing this Alexis is snoozing her in princess decorated crib. She sleeps a lot lately due to some of her medication. While it's nice that she's not irritable and un-sootheable, it's frustrating that she's not awake and alert much at all during the day, making it difficult to work on her occupational and physical therapy, as well as her normal baby movements of kicking and moving around. The neurologists were in today and plan to now be in to examine her every day as she still has an undiagnosed neurological issue.
Since tomorrow is the first of the month, we get an entirely new team of cardiologists and neurologists to treat Alexis. They will meet with and be thoroughly updated by the previous roatation of doctors. We are optimistic that having a new set of people examine her may shed some new insight and opinions into her condition and care.
Specific Prayer Requests:
Pray for the new team of doctors as they try to diagnose Alexis' cause of complications and find a treatment for them.
Pray that this week we are able to see some sort of improvement in Alexis' condition. The most important reflex for her to regain is her gag reflex. Pray for this to come back soon so we can begin working on feeding therapy.
Sunday, November 30, 2008
Saturday, November 29, 2008
Saturday, November 29th-AM
Yesterday was a very frustrating day! Lexi is a cardiac patient, but she remains in the hospital due to a neurological problem. On Friday, the neurologist never came to see her because she is not on their rounds. We got very little accomplished yesterday!
Today, we did make some advancements (so far this morning at least). The cardiologist and neurologist both came in today. Their "best guess" is in fact that Alexis has a temporary paralysis of the cranial nerves. The odd thing is that it isn't all 12 of the nerves. However, the neurologist have yet to give Lexi a thorough exam. After our own research, it appears that Lexi does not have control of nerves 5,7,9 and 12. The neurologist said today that they want to just "wait and see" (which was one of our fears!). They will not plan to do much of anything with Lexi this entire next week and see if she shows any signs of improvement. If she doesn't, they will do an additional tests, but these will move into the more painful tests for Lexi. The doctor said for other patients that have had similar symptoms, it typically takes 4-6 weeks for the nerves to "reconnect." This means that we would not be home for Christmas.
Prayer Requests:
Please pray for continued wisdom from the neurologist. They have not been taking Lexi's case very seriously. We need her to become a priority so we can figure out what has happened to her and find a cure! We want more than anything to have her home with her sisters for Christmas!
PLEASE pray that the paralysis of the nerves goes away and Lexi's reflexes return to normal. We know God can do amazing things and can heal her even this week. We would LOVE for the doctors to be astounded at her quick recovery so we can tell them we serve a HEALING God!
Pray for Cherie as she travels home to be with the twins today and tomorrow and for Jon as he remains at the hospital. It has become apparent that one of us MUST ALWAYS be at the hospital as we are the only advocate for Lexi and her care!
Today, we did make some advancements (so far this morning at least). The cardiologist and neurologist both came in today. Their "best guess" is in fact that Alexis has a temporary paralysis of the cranial nerves. The odd thing is that it isn't all 12 of the nerves. However, the neurologist have yet to give Lexi a thorough exam. After our own research, it appears that Lexi does not have control of nerves 5,7,9 and 12. The neurologist said today that they want to just "wait and see" (which was one of our fears!). They will not plan to do much of anything with Lexi this entire next week and see if she shows any signs of improvement. If she doesn't, they will do an additional tests, but these will move into the more painful tests for Lexi. The doctor said for other patients that have had similar symptoms, it typically takes 4-6 weeks for the nerves to "reconnect." This means that we would not be home for Christmas.
Prayer Requests:
Please pray for continued wisdom from the neurologist. They have not been taking Lexi's case very seriously. We need her to become a priority so we can figure out what has happened to her and find a cure! We want more than anything to have her home with her sisters for Christmas!
PLEASE pray that the paralysis of the nerves goes away and Lexi's reflexes return to normal. We know God can do amazing things and can heal her even this week. We would LOVE for the doctors to be astounded at her quick recovery so we can tell them we serve a HEALING God!
Pray for Cherie as she travels home to be with the twins today and tomorrow and for Jon as he remains at the hospital. It has become apparent that one of us MUST ALWAYS be at the hospital as we are the only advocate for Lexi and her care!
Thursday, November 27, 2008
Thursday, November 27th- PM
Happy Thanksgiving. Even amidst all of these difficult days, we have many things to be thankful for. Today, my parents brought our beautiful, healthy twins down for a visit and we went to dinner at a hotel. When we got off the elevator, my entire family was there! (Andy and Mindy were "there" via phone since they were visiting her family in Texas). They insisted that we all spend Thanksgiving together. It was very touching and such an blessing for Jon and I for our entire family to be together for even a short time. We are also thankful for all of your prayers and support. I know many, many people that tell Jon and I and our family that they read the blog daily. This means a great deal to us and we continue to covet your prayers. We also are thankful for those of you who have given of yourselves, either with time or finances, to help encourage us and lift us up. It is greatly needed and greatly appreciated.
For Lexi's update, we had a big answer to prayer last evening for her MRI. The doctors said they were going to try her MRI without sedation, which is difficult for an infant to lay still for almost an hour. If Lexi didn't lay still, they would have to do the MRI next week and would have to give her another breathing tube. We made some quick calls and asked for prayer. Lexi not only made her 1st MRI at 4pm without any movement, she made it through the MRA that evening as well. Praise God!
The doctors were in again today and are beginning to eliminate some possible sources of the problem. The MRI did show the Lexi has had a mini stroke. It is a VERY small spot and the doctors do not believe this will lead to any long-term damage. However, the area of stroke does not explain her lack of facial reflexes. While there is no test to actually see the cranial nerves, the MRI does not show any damage to the part off the brain that controls those nerves. The neurologist HOPE that for some reason, Lexi's cranial nerves (4 out of the 12 nerves) are slow to wake up from all of her sedation while she was in ICU. If this is the case, this means we will just have to "wait and see" and PRAY that the nerves "wake up" and regains she full function of her reflexes. If this is not the case and there is some permanent damage, we will be facing some unknown challenges with Lexi and her recovery. The doctors have also started a different seizure medication for Lexi. This type is more of a sedative and Lexi has been MUCH less irritable. She is sleeping a lot during the initial doses but will become more alert again as her body adjusts.
Prayer Requests:
Pray that this mini stroke is the ONLY episode Lexi will have during her recovery process.
Pray for wisdom for the neurologists and that this is only a temporary problem. PLEASE pray that Lexi begins to DAILY show some improvement in her facial reflexes. This would be a HUGE encouragement to Jon and I! This will also give us a much better indication as to what the "road ahead" entails for Lexi's recovery.
Pray for the twins. This is a difficult time of adjustment for them- seeing mommy a tiny bit at a time and then having to leave again. They are beginning to have some minor personality changes and we would like to get their lives back to normal as soon as possible!
Thank you again for your continued support. We need a DIVINE intervention for Lexi but know we serve an amazing God who answers prayer!
For Lexi's update, we had a big answer to prayer last evening for her MRI. The doctors said they were going to try her MRI without sedation, which is difficult for an infant to lay still for almost an hour. If Lexi didn't lay still, they would have to do the MRI next week and would have to give her another breathing tube. We made some quick calls and asked for prayer. Lexi not only made her 1st MRI at 4pm without any movement, she made it through the MRA that evening as well. Praise God!
The doctors were in again today and are beginning to eliminate some possible sources of the problem. The MRI did show the Lexi has had a mini stroke. It is a VERY small spot and the doctors do not believe this will lead to any long-term damage. However, the area of stroke does not explain her lack of facial reflexes. While there is no test to actually see the cranial nerves, the MRI does not show any damage to the part off the brain that controls those nerves. The neurologist HOPE that for some reason, Lexi's cranial nerves (4 out of the 12 nerves) are slow to wake up from all of her sedation while she was in ICU. If this is the case, this means we will just have to "wait and see" and PRAY that the nerves "wake up" and regains she full function of her reflexes. If this is not the case and there is some permanent damage, we will be facing some unknown challenges with Lexi and her recovery. The doctors have also started a different seizure medication for Lexi. This type is more of a sedative and Lexi has been MUCH less irritable. She is sleeping a lot during the initial doses but will become more alert again as her body adjusts.
Prayer Requests:
Pray that this mini stroke is the ONLY episode Lexi will have during her recovery process.
Pray for wisdom for the neurologists and that this is only a temporary problem. PLEASE pray that Lexi begins to DAILY show some improvement in her facial reflexes. This would be a HUGE encouragement to Jon and I! This will also give us a much better indication as to what the "road ahead" entails for Lexi's recovery.
Pray for the twins. This is a difficult time of adjustment for them- seeing mommy a tiny bit at a time and then having to leave again. They are beginning to have some minor personality changes and we would like to get their lives back to normal as soon as possible!
Thank you again for your continued support. We need a DIVINE intervention for Lexi but know we serve an amazing God who answers prayer!
Wednesday, November 26th, pm
Alexis had a busy day today. The neurologist came to look at her again, and try to explain what is happening with her facial reflexes. There is obviously an issue with her cranial nerves that control various movements of her face. What this "issue" is is yet to be discovered. The difficult thing is that the head cardiologist, head neurologist, and head OT have never seen this. Lexi had a MRI late afternoon. She then had a MVA (which is similar to a MRI, but studies blood flow through the brain). When we left the hospital tonight we were waiting for the results to come back. We will update this on Thanksgiving as soon as we hear something.
Prayer requests:
Pray that the tests will bring answers to the movements in the face. Also, pray for safe traveling for Cherie's parents as they will be bringing the twins down for Thanksgiving.
Happy Thanksgiving
Prayer requests:
Pray that the tests will bring answers to the movements in the face. Also, pray for safe traveling for Cherie's parents as they will be bringing the twins down for Thanksgiving.
Happy Thanksgiving
Tuesday, November 25, 2008
Tuesday, November 25th-PM
Unfortunately, we have taken a step backwards today. As you can imagine, this is VERY difficult when you cling to every small stp of progress. The Doctors do not think Lexi has a gag reflex, along with her inability to suck. Because of this, they have stopped allowing her to try mouth feeds with Occupational Therapy (OT). If Lexi doesn't have a good gag reflex, she can swallow the milk incorrectly and it can go into her lungs, which can develop into pneumonia. OT will continue to work with her using a pacifier but Lexi has NO interest in this! Neurology ordered Lexi's 4th EEG and that was completed about 11pm tonight (it has been a very long day!) We will get the results back sometime tomorrow. PLEASE read the specific prayers requests below as I, Jon, and my family are beginning to reach a breaking point and need a Divine intervention for some answers for Lexi.
Pray for:
The neurology team as they try to sort out exactly what has happened with Lexi. Her incision is completely healed from a cardiac standpoint. Something happened nuerologically either during surgery or recovery to cause these facial issues with Lexi. Pray that someone is able to sort it all out and find the cause and hopefully a cure!!
Pray for strength for me. I will be honest in the fact that I am overwhelmingly exhausted and emotionally drained. When Lexi is awake, she cries. Most babies are soothed by sucking- either a pacifier or a bottle. Lexi does not currently have this ability so my soothing options are limited to swaying back in forth in front of her crib (I can't go far because of the feeding tube), or patting her little bottom. I need patience and comfort as I am down in Columbus alone. Pray that the right nurses are put in place for each of the shifts so I can have comfort in Lexi's care.
Pray for my family and the twins back home as they continue to provide care for the twins.
PLEASE pray that God will perform a miracle in little Lexi's body and cure this "short curcuit" in her brain.
Pray for:
The neurology team as they try to sort out exactly what has happened with Lexi. Her incision is completely healed from a cardiac standpoint. Something happened nuerologically either during surgery or recovery to cause these facial issues with Lexi. Pray that someone is able to sort it all out and find the cause and hopefully a cure!!
Pray for strength for me. I will be honest in the fact that I am overwhelmingly exhausted and emotionally drained. When Lexi is awake, she cries. Most babies are soothed by sucking- either a pacifier or a bottle. Lexi does not currently have this ability so my soothing options are limited to swaying back in forth in front of her crib (I can't go far because of the feeding tube), or patting her little bottom. I need patience and comfort as I am down in Columbus alone. Pray that the right nurses are put in place for each of the shifts so I can have comfort in Lexi's care.
Pray for my family and the twins back home as they continue to provide care for the twins.
PLEASE pray that God will perform a miracle in little Lexi's body and cure this "short curcuit" in her brain.
Monday, November 24, 2008
Monday, November 24 P.M.
Since I (Cherie) am now in Columbus by myself, I will be updating these posts once a day - probably each evening. Today has been a busy day as we have moved to a new hospital unit. All of the attending physicians needed to examine Lexi and talk with me about her progress. We had medical visitors for 4 hours straight this morning. Alexis had another CAT scan this morning because neurologists were concerned about her inability to feed, as well as some issues with her eyes. We started working on feedings today with a feeding specialist. This is going to be a slow process. We are hoping to see her get stronger with each attempted feeding.
Specific Prayer Requests:
The neurologists as they try to make a decision about some unanswered issues.
Pray that Alexis will show improvement in her attempted feedings.
Pray for me as I'm here alone. It's becoming physically and emotionally draining being Alexis' only advocate down here trying to meet with doctors and make decisions about her care. I need specific prayer for strength and energy. This is going to be a long process for everyone.
Specific Prayer Requests:
The neurologists as they try to make a decision about some unanswered issues.
Pray that Alexis will show improvement in her attempted feedings.
Pray for me as I'm here alone. It's becoming physically and emotionally draining being Alexis' only advocate down here trying to meet with doctors and make decisions about her care. I need specific prayer for strength and energy. This is going to be a long process for everyone.
Sunday, November 23, 2008
Sunday, November 23- PM
Today has been a very eventful day for Lexi! The twins came for a visit. We, Jon and I, were both so glad to see them! They have grown so much in the past 10 days! A BIG PRAISE- Lexi has been moved out of ICU! Her weight upon leaving ICU is 6 lbs. and 7 oz. She is now on the 5th floor- the cardiac floor. Things are VERY different on this floor. There is a central nurses station and Lexi has her own room. This has been a bit "disturbing" for us though because she has gone from having her own nurse to getting attention only as absolutely needed. While this is a good sign, this means I (Cherie) will be doing the large majority of the care for Lexi. This includes sleeping in the room and getting up every 2 hours when her feeding tube needs refilled. We will get to come home when Lexi is able to drink all bottles on her own. She does not understand the swallowing or the sucking motion. The nurses have told me that this TYPICALLY takes from 1 1/2 weeks to 2 months for babies to re-learn! We are PRAYING that this will be on the very short end for Lexi. We cannot physically, emotionally or financially do this for a lengthy period of time. The twins need their mommy back and I would REALLY like to be home for the holidays.
Prayer Requests:
First, a HUGE praise that Lexi has been taken out of the ICU- what a step in the RIGHT direction!
We are asking for many prayers in Lexi's feeding. We didn't understand that this would be such a process for her to relearn something that babies do in the womb. The doctors do not know why most babies with heart surgery lose all feeding skills, but it is somewhat common. Pray that Lexi is a VERY quick learner and is able to adjust quickly so we can come home!
Pray for Jon as he heads back to work tomorrow morning and is daddy and mommy to twins. Pray for Cherie as she stays in Columbus with Lexi and begins some long days and short nights.
Prayer Requests:
First, a HUGE praise that Lexi has been taken out of the ICU- what a step in the RIGHT direction!
We are asking for many prayers in Lexi's feeding. We didn't understand that this would be such a process for her to relearn something that babies do in the womb. The doctors do not know why most babies with heart surgery lose all feeding skills, but it is somewhat common. Pray that Lexi is a VERY quick learner and is able to adjust quickly so we can come home!
Pray for Jon as he heads back to work tomorrow morning and is daddy and mommy to twins. Pray for Cherie as she stays in Columbus with Lexi and begins some long days and short nights.
Sunday, November 23rd am
Lexi is going to remain in the ICU today. She has been taken off of her potent blood pressure medicine. This is very exciting, and her blood pressure is remaining "acceptable". However, she has developed some fluid on her right lung, so they will begin treatments on that today so she doesn't develop pneumonia. Once the fluid is gone, THEN, they will look at trying to move her out of ICU again. We are very anxious for this step in the process, but know the doctors will not move her until they are confident she is stable enough to move.
Prayer requests:
Pray for the fluid on Lexi's lungs to go away quickly so she does not develop pneumonia. Pray that her blood pressure remains stable with out the potent blood pressure medication. Also, pray for Lexi as she begins occupational therapy today, and that she is able to relearn how to bottle feed again.
Pray for safe traveling for Cherie's sister and her husband. Also, for Cherie's mom and the twins as the twins come for the first time today.
Pray for a smooth transition for Jon as he heads back to his "normal" life. Also, keep Cherie's parents in you prayers as they will be coming to our house at 5 am to be with the twins as Jon heads to work.
Prayer requests:
Pray for the fluid on Lexi's lungs to go away quickly so she does not develop pneumonia. Pray that her blood pressure remains stable with out the potent blood pressure medication. Also, pray for Lexi as she begins occupational therapy today, and that she is able to relearn how to bottle feed again.
Pray for safe traveling for Cherie's sister and her husband. Also, for Cherie's mom and the twins as the twins come for the first time today.
Pray for a smooth transition for Jon as he heads back to his "normal" life. Also, keep Cherie's parents in you prayers as they will be coming to our house at 5 am to be with the twins as Jon heads to work.
Saturday, November 22, 2008
Saturday, November 22 p.m.
Alexis had a pretty good day today. Both mommy and daddy got to hold her today:-). Alexis remains on the blood pressure medicine through her IV and orally. They are weening her off still from the IV and will continue the medicine orally for a few months. Lexi had her arterial line removed today. This was a line that was connected to a main artery in her leg to check her blood pressure. Now all she has left to be removed is two IV's and her feeding tube. The are also weening Lexi off of her oxygen. We were able to try to feed Lexi a bottle today, but were not able to successfully feed her. Lexi has forgotten how to suck on the bottle. The doctors say this is normal, and will take some time for her to relearn. The occupational therapist will be working with her to relearn to feed and how to move her muscles again since she hasn't moved for a while. The doctors stated since Lexi has spent a third of her life in the ICU, it will take some time for her to relearn stuff she learned at birth.
Prayer requests:
Pray for Lexi's continued recovery. That she can be moved up to the cardiac step down floor because she has been in the ICU for 8 days.
Pray for Lexi's continued recovery. That she can be moved up to the cardiac step down floor because she has been in the ICU for 8 days.
Pray for patience for Jon and Cherie. It is going to be a longer process then realized. Pray for safe travels tomorrow for our family. The twins are coming to visit for the first time. Please pray for a smooth transition for the twins. They will be seeing mommy for the first time in a week, and then will be leaving to go home with daddy.
Saturday, November 22- AM
Lexi had an uneventful night (Praise God!). She is sleeping a lot but hopefully will begin to wake up more today. We are even going attempt a bottle feed today which means that Cherie will hopefully get to hold her (it has been 6 days!). If she tolerates a bottle feed this afternoon, we will attempt another one tonight. They will keep the feeding tube in place and feed her through that also until she is well enough to eat every meal by bottle. Lexi also had 3 poopie diapers yesterday! How exciting! (It's amazing the small things you get excited about in the ICU). As we mentioned last night, Lexi had to be placed back on her "potent" blood pressure medication. She can not be moved out of the ICU until she is able to be off and stay off of this medication. They are going to try to begin weening her back off of it again today.
Specific Prayer Requests:
Please pray for Lexi's blood pressure. Without her potent medication, it is EXTREMELY high (typically in the 120s over the 60s- they want babies to be 60s over 40s).
Pray that the bottle feeds go well and that Lexi remains stable as she is moved around more today. Pray that we will finally get to hold her again.
Pray for us as we begin to focus back on life outside of the ICU. Jon returns home tomorrow evening to go back to work and take care of the twins. Cherie will remain in Columbus. The financial burden of this situation is beginning to become a reality. Pray that we will be able to budget effectively in order to adapt to the large financial expenses.
Specific Prayer Requests:
Please pray for Lexi's blood pressure. Without her potent medication, it is EXTREMELY high (typically in the 120s over the 60s- they want babies to be 60s over 40s).
Pray that the bottle feeds go well and that Lexi remains stable as she is moved around more today. Pray that we will finally get to hold her again.
Pray for us as we begin to focus back on life outside of the ICU. Jon returns home tomorrow evening to go back to work and take care of the twins. Cherie will remain in Columbus. The financial burden of this situation is beginning to become a reality. Pray that we will be able to budget effectively in order to adapt to the large financial expenses.
Friday, November 21, 2008
Friday, November 21st p.m.
Lexi is doing well breathing on her own, and is now on a little bit of oxygen through her nose. Lexi continues to have issues with high blood pressure. The nurses put her back on blood pressure medicine tonight to help reduce it down to normal. Our other concern is for her tremors. At a high blood pressure level, Lexi starts shaking and the doctors do not know what the cause for this is. They are saying that they believe it is not seizures because there is no change to her heart rate and when they hold Lexi's arms or legs the movements stop. If this was a seizure the movements would continue even if being held. The doctors may do another EEG tomorrow just to better diagnose what is happening.
Prayer requests:
Pray that Lexi's blood pressure goes down because currently it is extremely high. Pray that the doctors can find a cause for and stop these tremors. Although the tremors are not causing Lexi any harm they are very un-nerving.
Praise:
Jon's business professor was very understanding of the situation and is willing to help us out in any way needed. Continue to pray as we seek to find a solution for his History class in hopes that we do not have to pay for it twice.
On a side note:
We had a special visitor today...One of the assistant coaches(from the Buckeyes) came up to Lexi's room to pay us a visit. He said that Coach Tressel received an email from someone telling him about our situation. He brought Lexi an autographed poster from the team. Luckily, Lexi was in her OSU hat. The coach then took us down to the third floor to meet James Laurenitus and Marcus Freeman and Brutus!!!! The players are not allowed in the ICU. We appreciate whoever sent the email as this was a bright moment in this difficult situation (For those of you who don't know, Jon is a huge fan!!!)
Prayer requests:
Pray that Lexi's blood pressure goes down because currently it is extremely high. Pray that the doctors can find a cause for and stop these tremors. Although the tremors are not causing Lexi any harm they are very un-nerving.
Praise:
Jon's business professor was very understanding of the situation and is willing to help us out in any way needed. Continue to pray as we seek to find a solution for his History class in hopes that we do not have to pay for it twice.
On a side note:
We had a special visitor today...One of the assistant coaches(from the Buckeyes) came up to Lexi's room to pay us a visit. He said that Coach Tressel received an email from someone telling him about our situation. He brought Lexi an autographed poster from the team. Luckily, Lexi was in her OSU hat. The coach then took us down to the third floor to meet James Laurenitus and Marcus Freeman and Brutus!!!! The players are not allowed in the ICU. We appreciate whoever sent the email as this was a bright moment in this difficult situation (For those of you who don't know, Jon is a huge fan!!!)
Friday, November 21st a.m.
PRAISE GOD!!! Alexis had her breathing tube taken out and seems to be breathing ok on her own. Please pray that the swelling in her throat is minimal and that she continues to breathe well by herself. We will update the blog today as things progress.
Friday, November 21st a.m.
Alexis should have a good day for the fact that she should be getting her breathing tube out today (praise God), but it probably will be an uncomfortable day for her. The doctors had to back off of her pain medicine before they pull her tube out because she needs to be fully aware of what is happening. The even better news is that the MRI came back this morning and every thing is "normal". They believe that all the "seizures" she has been having are not seizures rather "regular" baby movements and some aggravation. (Lexi is a little princess and doesn't like to be bothered!) The doctors will most likely be keeping her in the ICU until Sunday to monitor her breathing and to ensure that her blood pressure is normal. If everything goes well, she will be moved out of the ICU, and moved to the Cardiac Step Down Floor Sunday. She will continue to be fed by a feeding tube and then HOPEFULLY tomorrow WE will be able to hold her and feed her by bottle! We are so thankful to begin seeing some improvements. The doctors have said that for every tube that is removed, Lexi is one step closer to coming out of the ICU. The catheter was removed yesterday and today she should get rid of the ventilator and one IV. That only leaves 2 more IVs and two nose tubes (plus a bunch of wires that will be on until she goes home). Thank the Lord!
Prayer Requests:
Please pray that Alexis is comfortable during the removal of the breathing tube. Also, please pray for a smooth transition from the ICU to the CSDF.
Continue to pray for Jon's classes at Liberty as we seek some answers and BEG for extensions!
Prayer Requests:
Please pray that Alexis is comfortable during the removal of the breathing tube. Also, please pray for a smooth transition from the ICU to the CSDF.
Continue to pray for Jon's classes at Liberty as we seek some answers and BEG for extensions!
Thursday, November 20th p.m.
Finally! We had a day of positive events:-) Today, Lexi had her catheder removed, so now(as weird as it sounds) she gets to have her diaper changed just like a normal baby. Lexi also started breathing over top of the breathing machine. She had her MRI at 8 p.m. this evening. This will give us the whole picture of what is happening neurologically. We will know more once the doctors are able to read it in the morning. Lexi is also continuing to be on her feeding tube, and they will be increasing the amount she receives over the next few days. The doctors are looking to ween her off her ventilator tomorrow morning.
Prayer requests:
Pray that the MRI results come back "normal", and that there will be no signs of neurological damage. Pray that the process of weening her off her ventilator goes well.
Please continue to pray for Jon's classes. His History professor (Professor Snead) did not approve the extension for Jon's class. Jon will have to withdraw from the class and retake it in the spring which means we will again have to pay for it. We have asked an academic supervisor for a free pass so we do not have to pay for it again.
Continued prayer for Cherie's family for both traveling and the long hours they are putting in watching the twins. Pray also for Ally and Libby as they are having to transition back and forth from different people watching them. They are in the seperation anxiety stage, and this has been especially hard on Ally.
Prayer requests:
Pray that the MRI results come back "normal", and that there will be no signs of neurological damage. Pray that the process of weening her off her ventilator goes well.
Please continue to pray for Jon's classes. His History professor (Professor Snead) did not approve the extension for Jon's class. Jon will have to withdraw from the class and retake it in the spring which means we will again have to pay for it. We have asked an academic supervisor for a free pass so we do not have to pay for it again.
Continued prayer for Cherie's family for both traveling and the long hours they are putting in watching the twins. Pray also for Ally and Libby as they are having to transition back and forth from different people watching them. They are in the seperation anxiety stage, and this has been especially hard on Ally.
Thursday, November 20, 2008
Thursday, November 20- AM Update
We were hoping to hear from the neurologist before posting this, but I know many of you check this often and we want to keep everyone informed. We are in MUCH need of MANY prayers for little Lexi.
Lexi had another seizure around 6am this morning. They are looking to add an additional seizure medication, but will wait until we have seen the neurologists. They do have her hooked up to the EEGs (to measure her brain activity) and will keep her on it until they figure out what all is going on. The spot between her brain and skull that is bleeding is very small and they do not think this is what is causing the seizures. This is actually a big praise! There have been no strokes or any permanent damage done to the brain! They will most likely wait until sometime next week to do the MRI.
Today, they will again work on weening her off of the vent and will start to decrease her sedation medication in hopes to get her breathing on her own. They will keep the breathing tube in place even after they take her off the vent to help her make sure she's getting a full breath every time she breathes. She is back on her feeding tube
Prayer Requests:
Pray that the seizures can be diagnosed and a cause determined so we are able to get Lexi on the road to recovery.
Pray that the weening of the vent goes well and that Lexi can become less sedated today.
Pray for Jon's classes- he is trying to finish up his degree from Liberty University. Obviously, he hasn't thought much about classes for the past week! He is asking for an extension but this is completely up to each professor (he has 2 classes). If the professors agree, he can submit forms to get an extension. If they do not agree, he will have to retake the classes AND pay for them again. This is obviously not in our financial plan! Pray the professors have compassion for him and this situation!
Lexi had another seizure around 6am this morning. They are looking to add an additional seizure medication, but will wait until we have seen the neurologists. They do have her hooked up to the EEGs (to measure her brain activity) and will keep her on it until they figure out what all is going on. The spot between her brain and skull that is bleeding is very small and they do not think this is what is causing the seizures. This is actually a big praise! There have been no strokes or any permanent damage done to the brain! They will most likely wait until sometime next week to do the MRI.
Today, they will again work on weening her off of the vent and will start to decrease her sedation medication in hopes to get her breathing on her own. They will keep the breathing tube in place even after they take her off the vent to help her make sure she's getting a full breath every time she breathes. She is back on her feeding tube
Prayer Requests:
Pray that the seizures can be diagnosed and a cause determined so we are able to get Lexi on the road to recovery.
Pray that the weening of the vent goes well and that Lexi can become less sedated today.
Pray for Jon's classes- he is trying to finish up his degree from Liberty University. Obviously, he hasn't thought much about classes for the past week! He is asking for an extension but this is completely up to each professor (he has 2 classes). If the professors agree, he can submit forms to get an extension. If they do not agree, he will have to retake the classes AND pay for them again. This is obviously not in our financial plan! Pray the professors have compassion for him and this situation!
Wednesday, November 19, 2008
Wednesday, November 19th p.m.
There was not much change in Lexi's status from this morning through tonight. Lexi had four seizures total today. They did an EEG on her to watch her brain waves and found no abnormalities. The doctors then did an CT Scan and found that she had blood between her skull and her brain. It is called Subdural Hematoma. This is not blood on the brain and her brain is not swollen, so it is better news. The doctor stated that the blood should dissapate after a while. Lexi's surgery and recovery for her heart is still going very well. Lexi's blood pressure is also doing very well, but spikes when she is having the seizures. The EEG that they did today was an hour long EEG, so they did not see the seizure when it happened. They are going to do a 24 hour EEG to see if they can understand more if Lexi would have another seizure. We also have a MRI scheduled for tomorrow to better look at Lexi's head.
Prayer requests:
Please continue to pray for Lexi's seizures and recovery.
These have been very trying days. We, especially Cherie, would really be encouraged by SOME steps forward tomorrow. Right now Lexi is very sedated and we would love to see some "normal" baby activities.
Also, continue to pray for our families and friends as they are traveling back and forth to Columbus.
Thank you all for your much needed prayer!
Prayer requests:
Please continue to pray for Lexi's seizures and recovery.
These have been very trying days. We, especially Cherie, would really be encouraged by SOME steps forward tomorrow. Right now Lexi is very sedated and we would love to see some "normal" baby activities.
Also, continue to pray for our families and friends as they are traveling back and forth to Columbus.
Thank you all for your much needed prayer!
Wednesday, November 19th a.m.
Alexis had a little bit of a set back this morning. At 5 a.m and 8 a.m. she had a small seizure. The doctors were planning on taking Alexis off of the ventilator some time late morning, and now she will be left on the ventilator for at least another day. The will be doing further testing today to diagnose the seizure, and to see what this means for the future. She is heavily sedated today to stop the seizures and to keep her comfortable. She is being fed by a feeding tube through her nose. Unfortunately, it looks like she will be in the CICU (Cardiac Intensive Care Unit) at least until the weekend. If everything proceeds as planned, she will then be moved to a cardiac floor for a few days.
Prayer requests:
Please pray that the seizures are not long term, and that the testing comes back showing no side effects. Pray for wisdom for the Neurologist as the evaluate Lexi today.
Pray for Cherie's parents and Holly (her sister) for they are serving as serogate parents to the twins until we return home.
Prayer requests:
Please pray that the seizures are not long term, and that the testing comes back showing no side effects. Pray for wisdom for the Neurologist as the evaluate Lexi today.
Pray for Cherie's parents and Holly (her sister) for they are serving as serogate parents to the twins until we return home.
Tuesday, November 18, 2008
Tuesday, November 18th p.m.
Today has been a day of tiny baby steps (no pun intended) in terms of recovery for Lexi. She has been put on a new blood pressure medication that is a beta-blocker. This has tremendously helped lower her blood pressure. They're continuing to ween her off of her ventilator, and hope to have it removed some time late tomorrow morning. The fluid on her longs is slowly but surely dissipating. Her swelling is going down, and was awake for the last five minutes before we left for the Ronald McDonald House.
Specific prayer requests:
Please pray for a good transition tomorrow off of her ventilator. This process can be a bit tricky because the doctors have to keep her blood pressure low, but also take away as much pain medicine as possible to ensure she is alert and able to breathe on her own. This probably will be a painful process for Lexi. Pray for her strength and her's as well as we overcome this next big obstacle.
Also, please pray that we can find the funds to purchase air purifiers for our home and a special breathing monitor that Lexi will need when she returns home.
Specific prayer requests:
Please pray for a good transition tomorrow off of her ventilator. This process can be a bit tricky because the doctors have to keep her blood pressure low, but also take away as much pain medicine as possible to ensure she is alert and able to breathe on her own. This probably will be a painful process for Lexi. Pray for her strength and her's as well as we overcome this next big obstacle.
Also, please pray that we can find the funds to purchase air purifiers for our home and a special breathing monitor that Lexi will need when she returns home.
Tuesday, November 18
Alexis was born October 28th, at 10:36 a.m. At birth the doctors found a heart murmur. Our family physician thought it was probably a mild murmur, but suggested we have it looked at by a cardiologist "just in case". We had an echo-cardiogram done at BVH on Thursday, November 13th. On Friday, November 14th, we met with the cardiologist at the BVH. He looked over the test results and was concerned with Lexi's results. He immediately admitted her to "the special care unit", and before we knew it she was being transported by ambulance to the Nationwide(Columbus) Children's Hospital.
Love from Alexis Mae!
Cherie & Jon
This is a picture of when I was first born.
This a picture of my sweet ambulance ride.
This a picture of my sweet ambulance ride.
This is me after my surgery.
Alexis went in for surgery for coarctation (narrowing) of the aorta on Monday, November 17th. It was a very long day. She started surgery prep at 11:00 a.m. and was done at 3:30 p.m. Basically during the surgery the surgeon cut out the damaged part of the aorta, stretched the good parts and stitched it back together.
Here is some amazing news and proof that God was watching over her: Every baby is born with a third "valve" in their heart. Within 3 weeks this "valve" closes itself off and your heart then uses the remaining two valves for the rest of your life. Miraculously, Alexis' third "valve" had not yet closed. The usually happens by day 21 of life, Alexis was 19 days old. This delay in her third valve closing quite literally saved her life. If it had closed before surgery her heart would have gone into cardiac arrest. Praise the Lord he sent the right doctors to diagnose this problem at the right time, because time was literally running out for her. We got her to the right hospital and the right doctors at the right time.
She seemed to do well during the surgery and were hopeful for a speedy recovery. They told us we would be able to see her about 45 minutes later and we could possibly even hold and feed her later that evening.
However, during the recovery process some compliations arose. We were finally able to see her almost 3 hours later. Her blood pressure was very high and having a difficult time regulating itself. Her heart was used to pumping through the kinked aorta. After surgery her heart continued pumping blood too hard which resulted in her high blood pressure. Her blood glucose level was also very high, resulting in an insulin drip. She was also kept on the breathing tube to help her breathe. All of these complications were the result of her body dealing with the stress of surgery and her body trying to adapt to her new heart configuration. Because of her stress and blood pressure she was temporarily paralyzed after surgery so she wouldn't move around and cause more stress or damage. It was difficult to see her little body hooked up to so many tubes and equipment, but also a relief to see that she had come through the surgery and that obstacle was behind us.
That's the background information. Today's Tuesday, November 18th-a.m update is:
Alexis is basically the same as last night, although she is beginning to be a little more alert, which is an encouraging sign. She is also off of her insulin, which is another positive step. She has developed liquid on her lungs, which should be able to be taken care of with medication. The doctors expect her to be on her breathing ventilator for another 24 hours and are working to wean her off the machine a little at a time today.
Here are some specific prayer requests:
She needs to regulate her blood pressure with less medication, and come off the breathing machine before she can move from the Cardiac Intensive Care Unit. We are hopeful this can happen within the next couple of days, but really have to take her recovery plans a day at a time.
She needs to regulate her blood pressure with less medication, and come off the breathing machine before she can move from the Cardiac Intensive Care Unit. We are hopeful this can happen within the next couple of days, but really have to take her recovery plans a day at a time.
Check back daily - we hope to update this each morning and evening to let you know how you can pray. We appreciate all of the prayers and support! Some have asked how best to contact us. We are currently staying at the Ronald McDonald house but it is easiest and fastest to receive mail at our home address. Family is there each day with the twins and are up here almost every day and are able to deliver mail to us.
Love from Alexis Mae!
Cherie & Jon
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