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!
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