Merry Christmas! We are extremely excited to let you all know that we received the BEST Christmas gift ever! Alexis is HOME!!!! Early on Christmas Eve morning, the doctors said she was doing so well with her continuous feeds, they decided to become very aggressive with moving Lexi up to her normal feeding schedule. Every 3 hours, they increased the feedings. They told us if she did well, they would allow us to come home. After her 6pm feed on Christmas Eve (and a visit from Santa), Lexi was discharged!! We arrived home late that evening and were able to surprise our whole family with our little miracle!
Lexi is home on 3 hour feeds but takes these feeds over the course on an hour. This means I set my alarm at night for every 3 hours and then am up for an hour. As you can imagine, this is already becoming exhausting and with the twins,there's no time for naps during the day. We will begin working with our family doctor to move Lexi down to half hour feeds over the next week or so and continue to work on her bottle feeding. Unfortunately, just because Lexi is home does not mean the work is over- it's actually just beginning! She will have a home health nurse 2 times a week and hopefully will also have PT, OT and feeding therapy twice a week. We are then taking her to Cleveland Clinic on January 2nd for a "second opinion." We PRAY that this will all be able to be done as an outpatient. We will be making trips to Columbus typically every two weeks for cardio, GI, opthomology and neuro appointments.
We want to thank everyone who has been praying so hard for Lexi. We never could've imagined she would be home for Christmas. God is good and we want to be sure to thank Him for this answer to prayer! PLEASE continue to keep our family in your prayers. Lexi is still on a long road to recovery as her cranial nerves begin to repair themselves and we seek to find answers to her condition.
Prayer Requests:
Please pray for strength for Jon and I. I am the type that requires a lot of sleep to function well. This will definitely not be the case for the next several months. Even if Lexi has the capability to go longer periods of time without feeds, she is still only 8 lbs. at 2 months old so we must ensure she gets all of her daily calories. Pray for growth and strength for Lexi.
Pray for her neurology apt. on January 2nd with Dr. Friedman at Cleveland Clinic. Pray for wisdom as he tries to get a grasp on Lexi's condition. Cleveland Clinic is also not covered under our insurance. We are trying to work on getting at least part of these apts. covered, but for now, we will be paying out of pocket for these visits. Pray that we are able to budget effectively to cover last year's and this coming year's expenses.
We will try to update the blog a few times a week as Lexi continues her recovery. We are still in need of a great deal of prayer and appreciate everyone checking in to see what the prayer needs are!
Thank you again for your support. We will post some Christmas photos of Lexi in the next few days!
Friday, December 26, 2008
Wednesday, December 24, 2008
Wednesday, December 24
Merry Christmas! We hope you are all enjoying your Christmas' with your families and taking time to remember the TRUE reason for this holiday- the birth of Jesus! Amidst all of our difficult weeks lately, we are so grateful that we have had such an amazing Savior to help pull us through these times. We know that through continued prayer from so many people, Lexi will (in God's timing) be healed. That's the only thing on our Christmas list this year!
For Lexi's update- she was in quite a bit of pain yesterday so they put her on morphine. This seemed to help her quite a bit and she slept all day. She was able to start directly on feeds yesterday but is back to receiving continuous feeds (getting a tiny bit all day long). Today, they will start working on moving her back to bolace feeds (giving her the entire amount over shorter periods of time- usually a half hour). How she tolerates these increases will determine when we can begin talking about the "H" word (HOME!!). Jon and I have started learning about home care for Lexi- we took infant CPR yesterday. It's amazing how much you pay attention to those classes when you have a very high chance of having to actually use it on your own child someday! Today, I will begin actually giving Lexi her meds through her feeding tube and learning how to use her pump. (I'm thinking about a new career as a nurse after all I've learned these past 6 weeks!).
Specific Prayer Requests:
Please pray for Lexi as she moves her feeding up to a more "typical" baby again. Pray she tolerates them well and her healing continues on her G-tube incision.
Pray for all of the families in the hospital during Christmas. I've been able to get to know a few of the other moms and babies of the floor and I know it is difficult for all of us to be away from home and our families during the holidays. Pray for peace and comfort!
Wishing you all a very Merry Christmas!
For Lexi's update- she was in quite a bit of pain yesterday so they put her on morphine. This seemed to help her quite a bit and she slept all day. She was able to start directly on feeds yesterday but is back to receiving continuous feeds (getting a tiny bit all day long). Today, they will start working on moving her back to bolace feeds (giving her the entire amount over shorter periods of time- usually a half hour). How she tolerates these increases will determine when we can begin talking about the "H" word (HOME!!). Jon and I have started learning about home care for Lexi- we took infant CPR yesterday. It's amazing how much you pay attention to those classes when you have a very high chance of having to actually use it on your own child someday! Today, I will begin actually giving Lexi her meds through her feeding tube and learning how to use her pump. (I'm thinking about a new career as a nurse after all I've learned these past 6 weeks!).
Specific Prayer Requests:
Please pray for Lexi as she moves her feeding up to a more "typical" baby again. Pray she tolerates them well and her healing continues on her G-tube incision.
Pray for all of the families in the hospital during Christmas. I've been able to get to know a few of the other moms and babies of the floor and I know it is difficult for all of us to be away from home and our families during the holidays. Pray for peace and comfort!
Wishing you all a very Merry Christmas!
Monday, December 22, 2008
Monday, December 22nd
Lexi had a VERY long day today. Lexi was taken off her feeds at 3 a.m. in hopes of having her G tube done. They were finally able to get Lexi in at 8:15 this evening. We have a HUGE praise in that the doctors were able to do the less invasive procedure. Lexi's stomach positioning cooperated so that they were able to put her peg tube in. The entire procedure only took an hour and a half, and Lexi is doing well! The healing time for this G tube is typically 5 to 7 days. The will begin tiny feeds tomorrow to see how she tolerates them.
Specific Prayer requests:
Thank you to everyone who was praying for Lexi today and for her procedure. We are so thankful that God allowed her to have the less invasive procedure done. Pray for Lexi as she begins to recover for this procedure. She is in some pain this evening and will be for the next few days.
Specific Prayer requests:
Thank you to everyone who was praying for Lexi today and for her procedure. We are so thankful that God allowed her to have the less invasive procedure done. Pray for Lexi as she begins to recover for this procedure. She is in some pain this evening and will be for the next few days.
Monday, December 22, 2008
The surgeons were able to work Alexis into the schedule today to have her G-tube put in! This is an answer to prayer but more prayer requests come with it. She will have to be intubated for this procedure so we are praying that she does not have any issues with it. They are going to attempt the less-invasive procedure for her G-tube insertion but if it is not successful, they will have to stop the surgery and re-schedule her for the more-invasive one.
Specific prayer requests for this afternoons procedure:
1. That the surgeons will be able to perform a successful surgery with the less-invasive proceedure and will not have to put her through the more invasive one in the future!
2. That the intubation will not cause her any problems.
3. That Alexis will have a quick recovery from this surgery.
4. That the G-tube will function as it needs to without any problems.
Specific prayer requests for this afternoons procedure:
1. That the surgeons will be able to perform a successful surgery with the less-invasive proceedure and will not have to put her through the more invasive one in the future!
2. That the intubation will not cause her any problems.
3. That Alexis will have a quick recovery from this surgery.
4. That the G-tube will function as it needs to without any problems.
Saturday, December 20, 2008
Friday, December 19
Today was, unfortunately, a very slow day. Neither the GI specialist nor the Cardiac Anesthesiologist were able to talk directly to me due to them being in surgery all day. We have decided to try the least invasive procedure first and then, if this does not work, have the surgery done. However, there still remains the complication of anesthesia. I remained at the hospital until late Friday night, but was not able to get any answers (things tend to "shut down" on the weekends). So, we will be pushing very hard on Monday for some answers to our questions in hopes of getting Lexi's G-tube put in next week.
Specific Prayer Requests:
Please pray for our frustration level. As the holiday draws near, the operating rooms are actually extremely busy with people wanting to get elective procedures done and others (like us) wanting to get their children home. It has been difficult to even find time to speak with the surgeons to get answers. We were hoping to have Lexi home for Thanksgiving, and now it doesn't appear we will even have her home for Christmas. This is obviously extremely disappointing to our entire family...
Specific Prayer Requests:
Please pray for our frustration level. As the holiday draws near, the operating rooms are actually extremely busy with people wanting to get elective procedures done and others (like us) wanting to get their children home. It has been difficult to even find time to speak with the surgeons to get answers. We were hoping to have Lexi home for Thanksgiving, and now it doesn't appear we will even have her home for Christmas. This is obviously extremely disappointing to our entire family...
Thursday, December 18, 2008
Thursday, December 18th
Lexi did very well on her EMG test today! The results showed that she does not have any permanent nerve damage on her face! This is again a big answer to prayer! The nerves that are towards the "surface" of her brainstem appear to be fine, which means the problem is deeper in the brainstem. I was also able to talk with Dr. Roach, the head of neurology, for about an hour today. His "best guess" is that Lexi suffered some cranial nerve damage during her heart surgery during a period when her blood pressure went very low. There are no more tests that can be run. If this is the case, this type of nerve damage typically repairs itself over time, but there are no guarantees. Dr. Roach said that in his experience with similar type damage, it usually takes "months." Nerves heal at about 1 millimeter a day, so it would depend on how much damage has happened, and there is no test to determine exactly how much damage there is.
We are continuing to discuss Lexi's G-tube. After speaking with the GI Attending Physican this evening, we have two different options- trying the less invasive approach and hope they will be able to do it or proceeding with the surgery. Jon and I will need to give this some additional thought and a great deal of prayer. I will be talking with the head of cardiac anesthesia tomorrow to weigh his opinion about again putting Lexi under anesthesia since she had such difficulty from her last surgery.
Specific Prayer Reqests:
Our biggest current issue Lexi's G-tube. Pray that we have wisdom in what decision to make for Lexi.
Pray for Lexi's nerve damage (if this is in fact what it is). Pray that there is minimal damage and these nerves will repair themselves at RAPID pace!)
We are continuing to discuss Lexi's G-tube. After speaking with the GI Attending Physican this evening, we have two different options- trying the less invasive approach and hope they will be able to do it or proceeding with the surgery. Jon and I will need to give this some additional thought and a great deal of prayer. I will be talking with the head of cardiac anesthesia tomorrow to weigh his opinion about again putting Lexi under anesthesia since she had such difficulty from her last surgery.
Specific Prayer Reqests:
Our biggest current issue Lexi's G-tube. Pray that we have wisdom in what decision to make for Lexi.
Pray for Lexi's nerve damage (if this is in fact what it is). Pray that there is minimal damage and these nerves will repair themselves at RAPID pace!)
Wednesday, December 17, 2008
Wednesday, December 17th
Jon and I have been very busy trying to make some very important decisions for Alexis. We received the results back of her echo from Monday and the narrowings in her aorta are still considered "mild" so no further heart surgery is needed in the very near future. (Thank the Lord!) We had another new Cardiology Attending start his rotation yesterday so we have received another new perspective. After speaking with the neurologist yesterday and this morning, we have decided to have an EMG done tomorrow for Lexi. This procedure will put very small needles onto her face and send small shock waves through the nerves and muscles to determine if there is any permanent nerve damage to the 7th cranial nerve. While painful, this test will last about 15 minutes (if Lexi "participates!") and we are praying it will give us some answers. I am also meeting with the head of the neurology department, Dr. Roach, tomorrow. We are hoping that this meeting (and his examination of Lexi) will give us some much-needed insight!
Finally, we are unfortunately going to have to pursue Lexi moving to a permanent feeding tube called a G-tube that will be put directly into her stomach. This has been an EXTREMELY difficult decision for Jon and I to make, but at this point, Lexi is not taking anything orally and cannot remain on the nose feeding tube for an extended period of time. The test from Friday showed that Lexi's stomach is positioned a little different than most peoples'. While this is not a health risk, it does pose more of a problem for them putting in a G-tube. (We have come to the realization that Lexi likes to be very "perplexing!") In order to have the G-tube put in properly, Lexi will most likely have to under-go an additional surgery. We will know more after speaking with the GI surgeon tomorrow.
Specific Prayer Requests:
Please pray for Lexi's EMG and meeting with Dr. Roach tomorrow. Pray that BOTH will give us some much needed insight! Pray also that the results of the EMG will show no permanent nerve damage on Lexi's face and 7th cranial nerve!!
Pray for Jon and I as we are trying to decide about Lexi's G-tube. We are hoping the GI surgeon will be able to find a way to do the procedure through radiology and with minor sedation (which is how it is typically done) instead of having to put Lexi through another surgery and back on a ventilator!
Pray for progress with Lexi's feeds. Even if she is put onto the G-tube, we still need her to make progress with oral feeds so we can get her off the G-tube ASAP!
Finally, we are unfortunately going to have to pursue Lexi moving to a permanent feeding tube called a G-tube that will be put directly into her stomach. This has been an EXTREMELY difficult decision for Jon and I to make, but at this point, Lexi is not taking anything orally and cannot remain on the nose feeding tube for an extended period of time. The test from Friday showed that Lexi's stomach is positioned a little different than most peoples'. While this is not a health risk, it does pose more of a problem for them putting in a G-tube. (We have come to the realization that Lexi likes to be very "perplexing!") In order to have the G-tube put in properly, Lexi will most likely have to under-go an additional surgery. We will know more after speaking with the GI surgeon tomorrow.
Specific Prayer Requests:
Please pray for Lexi's EMG and meeting with Dr. Roach tomorrow. Pray that BOTH will give us some much needed insight! Pray also that the results of the EMG will show no permanent nerve damage on Lexi's face and 7th cranial nerve!!
Pray for Jon and I as we are trying to decide about Lexi's G-tube. We are hoping the GI surgeon will be able to find a way to do the procedure through radiology and with minor sedation (which is how it is typically done) instead of having to put Lexi through another surgery and back on a ventilator!
Pray for progress with Lexi's feeds. Even if she is put onto the G-tube, we still need her to make progress with oral feeds so we can get her off the G-tube ASAP!
Monday, December 15, 2008
Monday, December 15
Mondays are always very busy days! Lexi had an eye apt. with the opthamologist again today to keep a close watch on her eyes as they are a part of the cranial nerves. Everything is still fine with her vision! We also had another echocardiogram to keep a close eye on the 2 narrowings of her aorta. We will get the results on that tomorrow. Unfortunately, since we were on several "field trips," we missed most of the doctors today. We will have to wait until tomorrow to find out the results of her Friday tests.
Specific Prayer Request:
Lexi still is taking nothing by mouth. Please continue to pray for her feeding and that she gains some interest!
Specific Prayer Request:
Lexi still is taking nothing by mouth. Please continue to pray for her feeding and that she gains some interest!
Friday, December 12, 2008
Friday, December 12
Thank you to everyone who took time to pray for Lexi and her MRI this morning. She was able to lay still for most of the test. They were able to get clear enough pictures to determine that, once again, the MRI is normal. The Attending Physician for neurology came in this afternoon and spent about 45 minutes with Lexi. According to the neurologist, Lexi's condition is "perplexing" to the neuro team. They are, at this point, at least trying to come up with a "best guess" as they have done every test that is necessary and possible and they are all coming back completely normal. Lexi also had an upper GI test done today to study her digestive track. This also came back "acceptable" and will hopefully give us some more information on Lexi's feedings issues. We will know more details about the test on Monday.
Specific Prayer Requests:
PLEASE continue to pray for Lexi's feedings. She is still not interested in having anything put into her mouth. Obviously, she needs to get some interest before we can try oral feeds again!
Pray for me as I travel home. My parents are staying with Lexi tonight and Jon is heading back to Columbus Saturday afternoon. Jon and I are spending the first night home together in exactly a month! I will get to be home for 2 nights- which is a much needed break!
We will post again on Monday. Thank you for your continued prayers as we have now been in the hospital with Lexi for a month! It means a great deal to us to have so many people still interested and praying for Lexi and her recovery!
Specific Prayer Requests:
PLEASE continue to pray for Lexi's feedings. She is still not interested in having anything put into her mouth. Obviously, she needs to get some interest before we can try oral feeds again!
Pray for me as I travel home. My parents are staying with Lexi tonight and Jon is heading back to Columbus Saturday afternoon. Jon and I are spending the first night home together in exactly a month! I will get to be home for 2 nights- which is a much needed break!
We will post again on Monday. Thank you for your continued prayers as we have now been in the hospital with Lexi for a month! It means a great deal to us to have so many people still interested and praying for Lexi and her recovery!
Thursday, December 11, 2008
Thursday, December 11th
We had our "Care Conference" with the doctors and were able to get a few of our questions answered! While there are still no answers or "best guesses" as to what happened or is happening with Lexi, we were able to develop a game plan for her recovery process. This involves working with neurology to be sure absolutely all possible testing has been done and then also working with GI (gastro-intestinal specialists) to develop a plan for Lexi's feedings. It looks like Lexi's condition will most likely turn into a "wait and see" and "hope for the best." Having said that, Lexi continues to have no interest in sucking, which obviously means she is not taking anything orally. Apparently, she remains "bored" with the entire baby thing! Lexi also has another MRI scheduled for 8am tomorrow morning. This will be her 5th one! We have decided, however, that we do not want Lexi sedated and put on a vent for the procedure since we still do not know the cause of her current cranial nerve problem. We are hoping that she will again cooperate and be able to have the test done!
Specific Prayer Requests:
Thank you to everyone that prayed for our conference today. Jon and I both felt very calm and relaxed during the entire process and felt there was a very good line of communication.
Please pray for Lexi's MRI in the morning. Pray that she can lay still enough for them to complete the test since we do not want her put under more sedation!
Pray for Lexi to develop an interest in sucking again. We are praying for at least some interest in a pacifier!
Specific Prayer Requests:
Thank you to everyone that prayed for our conference today. Jon and I both felt very calm and relaxed during the entire process and felt there was a very good line of communication.
Please pray for Lexi's MRI in the morning. Pray that she can lay still enough for them to complete the test since we do not want her put under more sedation!
Pray for Lexi to develop an interest in sucking again. We are praying for at least some interest in a pacifier!
Wednesday, December 10, 2008
Wednesday, December 10th
Happy 6 week birthday to Lexi Mae! She is now a whopping 7lbs! Lexi had a pretty slow day today and only had to do a hearing test, which she again passed with flying colors. Apparently, Lexi was pretty bored today. She has been extremely uninterested in her feeds so we have not been able to achieve her feeding goals for the day. She was, however, extremely interested in her feeding tube. Lexi managed to pull her feeding tube out 3 times today! The nurses finally had to tape mittens onto her hands and she managed to pull those off as well. Then, when the nurse came in to weigh her this evening, she gave the nurse a little present on her scrubs- the stinky kind! I think it's her way of telling the nurses that she wants to be left alone! We are so thankful that she has such a strong attitude though and is a little fighter! On a very serious note, tomorrow is our meeting with all the doctors. There will be at least 7 doctors present and we are hoping that this "meeting of the minds" will help us find some answers and set some recovery goals for Lexi.
Specific Prayer Requests:
Please pray for our meeting tomorrow at 3pm. Pray that there is clear communication between all the doctors involved and that we are able to find some much-needed answers!
Continue to pray for Lexi's feeds. Pray that she becomes more interested in her feeding so we can attempt the swallow test again next week!
Pray for the twins adjustment period as we sometimes need up to 4 sitters to cover the days when Jon is at work and my mom is in Columbus.
Specific Prayer Requests:
Please pray for our meeting tomorrow at 3pm. Pray that there is clear communication between all the doctors involved and that we are able to find some much-needed answers!
Continue to pray for Lexi's feeds. Pray that she becomes more interested in her feeding so we can attempt the swallow test again next week!
Pray for the twins adjustment period as we sometimes need up to 4 sitters to cover the days when Jon is at work and my mom is in Columbus.
Tuesday, December 9, 2008
Tuesday, December 9th
Lexi has shown some improvement in regards to her constant crying! She has spent some time today in a "quiet alert" state! This is very encouraging and we hope the change in formula will continue to help settle her. The neuro team will be doing some more tests this week to try and get a better idea about Lexi's situation. Unfortunately, there are no tests that can isolate cranial nerves. They will be doing another CT, MRI, EEG and a test that will check the nerves of the brain stem. Hopefully, we will be able to get some results from these tests later this week! I was also able to speak with the cardio surgeon that did Lexi's surgery. He has never "seen, heard of or read about" this complication from surgery. He spent quite a bit of time talking with us but isn't really sure what the problem is! Lexi did work on 2 "bottles" today. She took 2 mls (1/2 a teaspoon) by a bottle. While such a small amount, this is a HUGE encouragement to us! Finally, our "Care Conference" has been scheduled for Thursday at 3pm. Jon will be taking the day off work in order to be here for this important meeting!
Specific Prayer Requests:
Please pray for continued wisdom for the neuro team as they brainstorm ideas of what could be happening with Lexi. Pray that the test done this week might give us some answers!
Pray for Lexi's feedings. This is one of the main obstacles she has to overcome in order to get home. Pray that Lexi develops an interest in the bottle and becomes stronger at her sucking reflex.
Specific Prayer Requests:
Please pray for continued wisdom for the neuro team as they brainstorm ideas of what could be happening with Lexi. Pray that the test done this week might give us some answers!
Pray for Lexi's feedings. This is one of the main obstacles she has to overcome in order to get home. Pray that Lexi develops an interest in the bottle and becomes stronger at her sucking reflex.
Monday, December 8, 2008
Monday, December 8th
Mondays always seem to be the day to "get things accomplished." After slow weekends, this is always encouraging. I was able to talk with the doctors today and we changed Lexi's formula to the most sensitive formula offered. Hopefully this will help with some of her constant crying (we're praying it is so!). I was also able to speak with the anesthesiologist that actually did Lexi's surgery. He is certain that her neurological symptoms are in no way related to anesthesia, which goes against everything the nuerologist were thinking. So, the neurologist are now looking into other possible causes/diagnosis for Lexi's cranial nerve issue. The best news is that Lexi's gag reflex has returned again! We will just pray it stays around this time! This means that tomorrow we will again begin oral feeds! We have also requested a "Care Council" where all the physicians of all departments involved in her care will sit down with Jon and I and discuss Lexi's current situation. This should occur later this week. We are hoping to get a much better "game plan" at this meeting!
Specific Prayer Requests:
We are asking for continued prayer for Lexi's constant crying. Pray that this new change in formula might be the answer!
Pray for continued wisdom for the doctors. There has been some discussion about Lexi being transferred to the neuro floor. Pray for wisdom for Jon and I as we decide if this will be the best situation for Lexi's care.
Pray for Lexi's gag reflex to stay put this time! Pray also that her oral feeds go well this week so we can attempt the swallow study test again!
Specific Prayer Requests:
We are asking for continued prayer for Lexi's constant crying. Pray that this new change in formula might be the answer!
Pray for continued wisdom for the doctors. There has been some discussion about Lexi being transferred to the neuro floor. Pray for wisdom for Jon and I as we decide if this will be the best situation for Lexi's care.
Pray for Lexi's gag reflex to stay put this time! Pray also that her oral feeds go well this week so we can attempt the swallow study test again!
Sunday, December 7, 2008
Sunday, December 7
Wow! We can't believe it's been over 3 weeks that we've been in the hospital. We never anticipated a routine (as routine as open heart surgery can be), straightforward surgery would result in a lengthy hospital stay. Had this been a normal recovery, we would have been home 5 days later - almost 2 1/2 weeks ago!
To be completely honest, the days are becoming very emotionally and physically draining for both Jon and me. Especially with the holidays approaching, it is difficult to feel like I'm missing out on the twins' lives. We no longer have a target date in mind, we are simply taking things a day and a week at a time.
Since there are alternating physicians on the weekends, no decisions or changes have been made regarding Alexis' care, so nothing new to report on her progress.
Specific Prayer Requests:
Please pray for comfort and rest for Alexis. Honestly, every minute she is awake she is crying and upset. We are asking the doctors tomorrow to look into the possibility of her having a gastro-intestinal or digestion problem. Please pray for her as she is having a lot of discomfort.
To be completely honest, the days are becoming very emotionally and physically draining for both Jon and me. Especially with the holidays approaching, it is difficult to feel like I'm missing out on the twins' lives. We no longer have a target date in mind, we are simply taking things a day and a week at a time.
Since there are alternating physicians on the weekends, no decisions or changes have been made regarding Alexis' care, so nothing new to report on her progress.
Specific Prayer Requests:
Please pray for comfort and rest for Alexis. Honestly, every minute she is awake she is crying and upset. We are asking the doctors tomorrow to look into the possibility of her having a gastro-intestinal or digestion problem. Please pray for her as she is having a lot of discomfort.
Saturday, December 6, 2008
Saturday, December 6
Well, apparently it is going to be 1 step forward and 2 steps back for little Lexi. Today, the doctors and nurses discovered that her gag is gone again. No one is sure why or how it could come and leave so quickly. But, this means they have taken her off any oral feeds. This is obviously a HUGE disappointment to us as we were very optimistic about attempting these feeds. The other frustrating thing is that the longest we have any doctor is 10 days. No one is really able to get a good handle on Lexi's case because they rotate the Attending Physicians so often. There is a different Attending every weekend as well, so we will have to wait until Monday to get any type of answers as to what they think might be happening.
On a side note: I have had several people ask if I am still doing Tastefully Simple. While I obviously haven't done any parties or orders in the past few weeks, I am easily able to place orders while here in Columbus. If you would like any gifts for the holidays, please e-mail me at tsorders@yahoo.com and let me know what you'd like. Now that we are (unfortunately) getting into a routine in Columbus, I will be placing orders every couple of days during the holidays. The website to look at the items available is www.tastefullysimple.com.
Prayer Requests:
Pray once again for Lexi's gag reflex to come back. Pray also that the cardiologists and neurologist can start working together to figure out exactly what is going on with Lexi.
Pray for Cherie as she "deals" with the doctors and trying to insist on some answers for Lexi. This is becoming very taxing. Pray for wisdom and strength!
On a side note: I have had several people ask if I am still doing Tastefully Simple. While I obviously haven't done any parties or orders in the past few weeks, I am easily able to place orders while here in Columbus. If you would like any gifts for the holidays, please e-mail me at tsorders@yahoo.com and let me know what you'd like. Now that we are (unfortunately) getting into a routine in Columbus, I will be placing orders every couple of days during the holidays. The website to look at the items available is www.tastefullysimple.com.
Prayer Requests:
Pray once again for Lexi's gag reflex to come back. Pray also that the cardiologists and neurologist can start working together to figure out exactly what is going on with Lexi.
Pray for Cherie as she "deals" with the doctors and trying to insist on some answers for Lexi. This is becoming very taxing. Pray for wisdom and strength!
Friday, December 5, 2008
Friday, December 5
Well...Lexi didn't fail her test, which is definitely an answer to prayer, but she barely passed it. Lexi didn't asparate. The esophagous is also controlled by the cranial nerves, so it is not reacting properly when she swallows. They are going to allow Lexi to do "therapeutic feeds". She will be given two ml's of pedialite by bottles (2 ml's equals half a teaspoon). This is a little disappointing, but we remain optomistic that she will get her feeding coordination down and do better at the swallowing next Friday. Lexi remains very fussy. When she is awake, she cries all the time. The doctors will look into this more this weekend.
Prayer requests:
Please pray that Lexi make huge improvements this week on her feeding, so she will pass her swallowing test next Friday.
Please pray that Lexi will find a cause for her fussiness.
Thank you for all your prayers for the twins. Libby is starting to feel better today!!!
Prayer requests:
Please pray that Lexi make huge improvements this week on her feeding, so she will pass her swallowing test next Friday.
Please pray that Lexi will find a cause for her fussiness.
Thank you for all your prayers for the twins. Libby is starting to feel better today!!!
Thursday, December 4, 2008
Thursday, December 4
This morning, Lexi managed to pull her NJ feeding tube completely out. She apparently is getting very tired of it! Since she now has her gag reflex back (Praise God again!), they were able to put the feeding tube back in again as an NG tube. This means that instead of putting food into her intestines, as it has been for the past 3 weeks, she is now able to have food into her belly! This is a step in the right direction. However, this sudden burst of food is making Lexi very irritable and is giving her a lot of belly aches!
Tomorrow morning is Lexi's swallow test. This will be done between 8-8:30am. This is imperative for her to begin feeding by bottle! If she passes, the OT will hopefully be able to start some oral feeds tomorrow afternoon. Otherwise, we will have to wait a few more weeks.
We also received the results of Lexi's echo cardiogram. Lexi still has a very loud heart murmur and the doctors were able to see a mild narrowing where her incision is on her aorta. They also found an additional narrowing down by her aortic valve. Both narrowings are mild and the doctors said they hope the narrowings will remain mild and not require additional surgery. She will have monthly check-ups to keep a close eye on these narrowings.
Specific Prayer Requests:
We are asking EVERYONE who reads this blog to take some time between 8-8:30am tomorrow morning and pray for Lexi during her swallow test. She is VERY fussy all morning. The OT and I are planning to do everything in our power to help Lexi participate in the test but we know we need an even Higher Power to help with the rest! Please pray that Lexi remains calm (they put her in a bouncy seat for the test and she HATES bouncy seats). Please also pray that she is able to suck and swallow the liquid and that she does not aspirate.
An ongoing prayer request will now be for Lexi's two narrowings. Pray that these continue to grow with Lexi and that additional surgeries will not be needed.
Libby is very sick with a stomach bug. She has not been able to keep anything down today. Pray that she has a quick turn-around and that Jon does not get the same bug. He'd like to come see Lexi this weekend!
Tomorrow morning is Lexi's swallow test. This will be done between 8-8:30am. This is imperative for her to begin feeding by bottle! If she passes, the OT will hopefully be able to start some oral feeds tomorrow afternoon. Otherwise, we will have to wait a few more weeks.
We also received the results of Lexi's echo cardiogram. Lexi still has a very loud heart murmur and the doctors were able to see a mild narrowing where her incision is on her aorta. They also found an additional narrowing down by her aortic valve. Both narrowings are mild and the doctors said they hope the narrowings will remain mild and not require additional surgery. She will have monthly check-ups to keep a close eye on these narrowings.
Specific Prayer Requests:
We are asking EVERYONE who reads this blog to take some time between 8-8:30am tomorrow morning and pray for Lexi during her swallow test. She is VERY fussy all morning. The OT and I are planning to do everything in our power to help Lexi participate in the test but we know we need an even Higher Power to help with the rest! Please pray that Lexi remains calm (they put her in a bouncy seat for the test and she HATES bouncy seats). Please also pray that she is able to suck and swallow the liquid and that she does not aspirate.
An ongoing prayer request will now be for Lexi's two narrowings. Pray that these continue to grow with Lexi and that additional surgeries will not be needed.
Libby is very sick with a stomach bug. She has not been able to keep anything down today. Pray that she has a quick turn-around and that Jon does not get the same bug. He'd like to come see Lexi this weekend!
Wednesday, December 3, 2008
Wednesday, December 3
We were able to gag today!! For those of you that have been following the blog closely, you know what this means! This is a HUGE praise! Thank you to those that have been praying specifically for this extremely important reflex to return!
Lexi was examined by both the neurology team and the OT today and they were both able to get a gag reflex from her! This means that we will now be able to proceed with the swallow test. This will be done Thursday or Friday. If Lexi "passes" the swallow test, she will then be able to start working on feeding. This will obviously be a huge step for her! The OT worked with her for some time today and was amazed at her progress since this past Friday, which was the last time she saw her. We know that this is due to the power of PRAYER!! Lexi is beginning to at least close her lips around a finger or pacifier. She doesn't "understand" the suck, breathe, swallow process yet, but the OT feels she will get this in no time. Lexi also had another echo-cardiogram and EKG today to check the progress and healing of her surgery.
Specific Prayer Requests:
Please pray for Lexi's upcoming swallow test. This is the next big step for her. If she passes, she will be allowed to work on feeding. If she does not pass, we will have to wait a few weeks and try again.
Pray for Ally and Libby. They are both sick with the stomach flu. Pray for patience for Daddy as he deals with the illness and for all or day time sitters as well!
On a side note-if any of our blog followers are ever coming to Columbus, if you would be willing to help transport family members who are coming to stay with me, it would save them an additional trip. You can either call if have our number or e-mail us at thehocansons@yahoo.com.
Lexi was examined by both the neurology team and the OT today and they were both able to get a gag reflex from her! This means that we will now be able to proceed with the swallow test. This will be done Thursday or Friday. If Lexi "passes" the swallow test, she will then be able to start working on feeding. This will obviously be a huge step for her! The OT worked with her for some time today and was amazed at her progress since this past Friday, which was the last time she saw her. We know that this is due to the power of PRAYER!! Lexi is beginning to at least close her lips around a finger or pacifier. She doesn't "understand" the suck, breathe, swallow process yet, but the OT feels she will get this in no time. Lexi also had another echo-cardiogram and EKG today to check the progress and healing of her surgery.
Specific Prayer Requests:
Please pray for Lexi's upcoming swallow test. This is the next big step for her. If she passes, she will be allowed to work on feeding. If she does not pass, we will have to wait a few weeks and try again.
Pray for Ally and Libby. They are both sick with the stomach flu. Pray for patience for Daddy as he deals with the illness and for all or day time sitters as well!
On a side note-if any of our blog followers are ever coming to Columbus, if you would be willing to help transport family members who are coming to stay with me, it would save them an additional trip. You can either call if have our number or e-mail us at thehocansons@yahoo.com.
Tuesday, December 2, 2008
Tuesday, December 2
We have been able to get several things accomplished today! Lexi saw 14 doctors today! This morning, Lexi passed her hearing test! This means that cranial nerve 8 is definitely working. My brother-in-law will be posting some new pictures tomorrow- be sure to check out the close-up of her with the cool earphones she got to wear during the hearing test. We also spent 2 hours at the opthomologist clinic at the hospital. They were able to do several tests to confirm that Lexi's eyes are healthy and functiong well. This means that cranial nerves 3,4, & 6 are also definitely working! We are seeing small improvements every day and PRAY this continues!
Prayer Requests:
Please pray for continued improvements. Even the smallest improvements have been extremely encouraging.
Pray for the weather. With my family driving back and forth almost daily, please pray that the roads remain clear and they have safe travels.
It is Jon and I's prayer to be home for Christmas. Please pray that we see drastic improvements over the next 3 weeks so we are able to spend Christmas together, at home, as a family!
Prayer Requests:
Please pray for continued improvements. Even the smallest improvements have been extremely encouraging.
Pray for the weather. With my family driving back and forth almost daily, please pray that the roads remain clear and they have safe travels.
It is Jon and I's prayer to be home for Christmas. Please pray that we see drastic improvements over the next 3 weeks so we are able to spend Christmas together, at home, as a family!
Monday, December 1, 2008
Monday, December 1
Happy December! Jon and I never imagined when this all began that we would still be in Columbus in December. Once again, we thank everyone who follows our blog and supports us with prayers. We have been so encouraged by the comments that have been left daily on our blog. We know many of you read it and we love getting comments from you as you pray for our family and little Lexi!
We have also been encouraged by the new team of doctors that we received today. We have received a clearer plan of action by both neurologists and cardiologists. Unfortunately, the majority of this plan involves waiting another 3 days to see if Lexi has any improvements before they do any further major testing. Lexi's neurological problem still remains undiagnosed and "puzzles" both the cardiac and neurological teams. The neurologists have decided to take her off all seizure medications. This should help her become more alert and allow them to assess her more accurately, as well as work on her OT and PT therapy that is vital to her improvement. We will also be seeing an opthamologist and hearing specialists so the doctors can begin determining exactly which cranial nerves have been affected.
Prayer Requests:
Pray for Alexis to show improvement, specifically in the next 3 days as her medication begins to wear off. Please pray that she will not have any side effects from being off her seizure medications. The next tests are more involved and we are hoping to avoid them.
PS
Alexis wanted us to pass on that she has added new pictures to her slide show, as well as to her "Group Prayer for Alexis Hocanson" page on facebook. She loves to show off how cute she is!
We have also been encouraged by the new team of doctors that we received today. We have received a clearer plan of action by both neurologists and cardiologists. Unfortunately, the majority of this plan involves waiting another 3 days to see if Lexi has any improvements before they do any further major testing. Lexi's neurological problem still remains undiagnosed and "puzzles" both the cardiac and neurological teams. The neurologists have decided to take her off all seizure medications. This should help her become more alert and allow them to assess her more accurately, as well as work on her OT and PT therapy that is vital to her improvement. We will also be seeing an opthamologist and hearing specialists so the doctors can begin determining exactly which cranial nerves have been affected.
Prayer Requests:
Pray for Alexis to show improvement, specifically in the next 3 days as her medication begins to wear off. Please pray that she will not have any side effects from being off her seizure medications. The next tests are more involved and we are hoping to avoid them.
PS
Alexis wanted us to pass on that she has added new pictures to her slide show, as well as to her "Group Prayer for Alexis Hocanson" page on facebook. She loves to show off how cute she is!
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