Lexi had her G-tube procedure today. We arrived at Nationwide around 10:30. The nurses put numbing cream on her tube site for an hour, hooked her up to monitors and then gave her sedation medication. The doctor then did her mic-key procedure. They replaced her long PEG tube with a shorter tube. Lexi did well and only had some minor bleeding from the procedure. We had to learn how take care of the new tube and how to replace it as-needed, or every 3 months. We're not sure we are comfortable removing the tube and inserting a new one into her stomach! We are hoping we can either have our home-health nurse or a doctor do this! After a trip to X-ray to check the placement of the tube, Lexi was able to go home (around 2:30pm). She is extremely fussy tonight and her tube site is very red and irritated. We are hoping to have her back to "normal" in a few days.
We have all of Lexi's doctors moved over to Cleveland Clinic except 2- endocrinology and cardiology. The pediatric endocrinologist isn't available in Cleveland until July. We are also trying to find a cardiologist that is best for Lexi.
Lexi's therapies are going well. Her swallow study shows that she is silently aspirating, which means she is showing no signs when liquid enters her lungs. This is obviously very discouraging and dangerous for Lexi so we are not giving her any more liquids by mouth. We are, however, trying some cereal and Lexi is taking 10-15 bites. She is also starting to grab for toys, which is very encouraging!
Please pray for:
Lexi as she recovers from her procedure and for Jon and I as we adjust to the new tubes and caring for it.
Easy transitions to Cleveland as our 1st 2 appointments are there on April 8th.
Lexi's feeds. Pray that she begins to develop some coordination with her tongue.
It's hard to believe that the twins turned 18 months today and Lexi will be 5 months on Saturday! She just hit 12 pounds but she is growing!
Thursday, March 26, 2009
Tuesday, March 17, 2009
Tuesday, March 17th
Happy St. Patrick's Day! I was just at a Mother's of Multiples meeting and was slightly scolded (and reminded) that I have not updated the blog. We do appreciate those of you that check this regularly as we still have a long, up-hill road to climb with Lexi.
We went down to Nationwide on Friday for Lexi's swallow study. We were anxious to find out how she is doing as we have seen some major improvements in her feeds! The swallow study did not go as we had planned. Lexi started off very well, but about 6-7 minutes into the study, she aspirated. This means she swallowed liquid into her lungs instead of down her esophagus. The danger in this is that developing fluid on the lungs can lead to pneumonia. We were extremely disappointed as we were not anticipating this! We have been instructed to stop all bottle feeds with her. They did try honey-thick cereal by a spoon and she seemed to manage this ok. So, we will most likely begin giving her a very small amount of cereal for "therapeutic feeds." We are hoping to do another swallow study in the near future and are praying that for some reason this aspiration was a fluke. It is very frustrating to see Lexi make so much progress (she was up to amost an ounce!) and then to have it taken away.
We also had a visit with the opthomologist (after a 3 hour wait!!). Fortunately, we received much better news at this appointment. Lexi's vision is within the normal range for babies her age! She still has some hazing on her right eye and we need to continue to keep eye drops and ointment on her eyes for her reduced blink reflex. But, we were relieved that there are no current issues with her eye sight!
Finally, after another extremely long day at the hospital, we have decided to transfer all of Lexi's care to Cleveland Clinic. This is a very taxing process as we see 9 doctors! We are in the process of trying to find Dr's that will be covered by our insurance and have openings in the near future. Both of these task are becoming rather difficult and finding the time to make many phone calls is difficult. However, we feel it is in Lexi's best interest to have all of her care at the same hospital and the level of care at Cleveland Clinic has been fantastic!
Prayer Requests:
Please pray for Lexi's feeds. We meet with the speech therapist later this week to discuss our new game plan. Pray for our frustration level at having to stop her bottle feeds.
Pray for me, Cherie, as I work to get Lexi's care transferred. Pray that we are led to the right doctors at Cleveland Clinic that will give Lexi the best care possible and be knowledgeable about her condition. Pray for wisdom for these doctors.
Lexi has been extremely fussy lately. We are not sure what is wrong but she definitely appears to be in pain. Pray that the doctors will be able to find the right medicines to keep her happy.
Lexi has her mickey button procedure next Thursday, March 26th so we will keep you posted! She will be going under sedation for this and this obviously frightens us! Pray for peace as we prepare for this procedure.
Finally, the best news of all is-Lexi rolled over this week! Seven times!! We are very excited that she is making some progress! Praise God for these "baby steps" that give us hope when we need it most!
We went down to Nationwide on Friday for Lexi's swallow study. We were anxious to find out how she is doing as we have seen some major improvements in her feeds! The swallow study did not go as we had planned. Lexi started off very well, but about 6-7 minutes into the study, she aspirated. This means she swallowed liquid into her lungs instead of down her esophagus. The danger in this is that developing fluid on the lungs can lead to pneumonia. We were extremely disappointed as we were not anticipating this! We have been instructed to stop all bottle feeds with her. They did try honey-thick cereal by a spoon and she seemed to manage this ok. So, we will most likely begin giving her a very small amount of cereal for "therapeutic feeds." We are hoping to do another swallow study in the near future and are praying that for some reason this aspiration was a fluke. It is very frustrating to see Lexi make so much progress (she was up to amost an ounce!) and then to have it taken away.
We also had a visit with the opthomologist (after a 3 hour wait!!). Fortunately, we received much better news at this appointment. Lexi's vision is within the normal range for babies her age! She still has some hazing on her right eye and we need to continue to keep eye drops and ointment on her eyes for her reduced blink reflex. But, we were relieved that there are no current issues with her eye sight!
Finally, after another extremely long day at the hospital, we have decided to transfer all of Lexi's care to Cleveland Clinic. This is a very taxing process as we see 9 doctors! We are in the process of trying to find Dr's that will be covered by our insurance and have openings in the near future. Both of these task are becoming rather difficult and finding the time to make many phone calls is difficult. However, we feel it is in Lexi's best interest to have all of her care at the same hospital and the level of care at Cleveland Clinic has been fantastic!
Prayer Requests:
Please pray for Lexi's feeds. We meet with the speech therapist later this week to discuss our new game plan. Pray for our frustration level at having to stop her bottle feeds.
Pray for me, Cherie, as I work to get Lexi's care transferred. Pray that we are led to the right doctors at Cleveland Clinic that will give Lexi the best care possible and be knowledgeable about her condition. Pray for wisdom for these doctors.
Lexi has been extremely fussy lately. We are not sure what is wrong but she definitely appears to be in pain. Pray that the doctors will be able to find the right medicines to keep her happy.
Lexi has her mickey button procedure next Thursday, March 26th so we will keep you posted! She will be going under sedation for this and this obviously frightens us! Pray for peace as we prepare for this procedure.
Finally, the best news of all is-Lexi rolled over this week! Seven times!! We are very excited that she is making some progress! Praise God for these "baby steps" that give us hope when we need it most!
Thursday, March 5, 2009
Thursday, March 5
Several people have asked how Lexi's Cleveland Clinic appointment went so we thought we'd go ahead and blog again this week.
First, Lexi slept the entire way to Cleveland! This was a big improvement! She screamed the entire way home but at least we got some peace one way!
The neurologist did a lengthy exam with Lexi. The good news is that he has ruled out everything possible as far as a disease, etc that might be causing this cranial/facial nerve damage. He feels Lexi's current issues are related to her heart surgery. This is good news as this means 2 things- 1- it is hopeful that it will get better and 2- it is not going to get worse!
We feel Lexi has made huge improvements. Dr. Friedman feels she has made "some improvements" but has a long way to go to have normal facial function. He is estimating another 6-12 months minimum. He also said that many people as their nerves are regenerating tend to develop some "tics." He said the nerves sometimes don't connect quite right again. For example, some people will yawn and their eyes will blink rapidly. We hope this does not happen to Lexi as she begins to heal. The Dr. would like to see her back in 3 months and will most likely do another EMG on her at that point.
Please pray for Lexi's continued healing. This is going to be a longer road to recovery than we were hoping for. Pray for patience and encouraging moments for Jon and I.
Lexi has to be taught every simple thing- even things as basic as grasping a toy. Pray that we are able to balance our time working with Lexi and spending time with the twins (and that we might even be able to find some time for us!)
Thank you to everyone who asks us how Lexi is doing. Is is a huge encouragement to us to know that even though this is going to be a very long road, we have many people still interested AND praying for little Lexi!
First, Lexi slept the entire way to Cleveland! This was a big improvement! She screamed the entire way home but at least we got some peace one way!
The neurologist did a lengthy exam with Lexi. The good news is that he has ruled out everything possible as far as a disease, etc that might be causing this cranial/facial nerve damage. He feels Lexi's current issues are related to her heart surgery. This is good news as this means 2 things- 1- it is hopeful that it will get better and 2- it is not going to get worse!
We feel Lexi has made huge improvements. Dr. Friedman feels she has made "some improvements" but has a long way to go to have normal facial function. He is estimating another 6-12 months minimum. He also said that many people as their nerves are regenerating tend to develop some "tics." He said the nerves sometimes don't connect quite right again. For example, some people will yawn and their eyes will blink rapidly. We hope this does not happen to Lexi as she begins to heal. The Dr. would like to see her back in 3 months and will most likely do another EMG on her at that point.
Please pray for Lexi's continued healing. This is going to be a longer road to recovery than we were hoping for. Pray for patience and encouraging moments for Jon and I.
Lexi has to be taught every simple thing- even things as basic as grasping a toy. Pray that we are able to balance our time working with Lexi and spending time with the twins (and that we might even be able to find some time for us!)
Thank you to everyone who asks us how Lexi is doing. Is is a huge encouragement to us to know that even though this is going to be a very long road, we have many people still interested AND praying for little Lexi!
Sunday, March 1, 2009
Sunday, March 1
It's hard to believe that it's March! Lexi turned 4 months old yesterday and the twins were 17-months on Thursday!
Now that we have been home and are settling into more of a routine, we are definitely seeing some improvements with Lexi. A new set of therapists also started working with her from Blancherd Valley Schools and they are fantastic! The speech therapists definitely think Lexi's suck and swallow have returned. Now it is a matter of getting her to re-learn the suck-breathe-swallow pattern and then develop endurance. Lexi is also finally starting to hold her head up a little better. We have been a little frustrated at how long it is taking her to do some basic baby things. However, one of the therapist said that when they calculate development, for every week a child spebnds in the hospital, it takes them 3 weeks to catch up. This would put Lexi 18 weeks behind. She is going to need a lot of therapy and a lot of prayers to get caught up!
At Lexi's most recent neonatalist appointment, she is finally on the growth chart for weight! She is 10 lbs 9 oz and in the 5th percentile. We aren't quite there for height but we'll take it!
Finally, the neurologist from Cleveland Clinic called on Friday and has moved Lexi's appointment to this Tuesday! Jon and I will be heading to Cleveland early Tuesday afternoon. These are very lengthy in-depth appointments but we are very excited to see what the neurologist has to say since he has not seen Lexi for almost 2 months!
Prayer Requests: We are thankful for Lexi's progress with eating as she takes about 10 mls on a regular basis for each feeding. Please pray she continues to work on her eating pattern and develop endurance. Pray for our appointment at Cleveland Clinic. We are very anxious about the appointment. Also pray that Lexi does well in her car seat. She typically screams the entire trip. Pray that her new therapies work well!
Now that we have been home and are settling into more of a routine, we are definitely seeing some improvements with Lexi. A new set of therapists also started working with her from Blancherd Valley Schools and they are fantastic! The speech therapists definitely think Lexi's suck and swallow have returned. Now it is a matter of getting her to re-learn the suck-breathe-swallow pattern and then develop endurance. Lexi is also finally starting to hold her head up a little better. We have been a little frustrated at how long it is taking her to do some basic baby things. However, one of the therapist said that when they calculate development, for every week a child spebnds in the hospital, it takes them 3 weeks to catch up. This would put Lexi 18 weeks behind. She is going to need a lot of therapy and a lot of prayers to get caught up!
At Lexi's most recent neonatalist appointment, she is finally on the growth chart for weight! She is 10 lbs 9 oz and in the 5th percentile. We aren't quite there for height but we'll take it!
Finally, the neurologist from Cleveland Clinic called on Friday and has moved Lexi's appointment to this Tuesday! Jon and I will be heading to Cleveland early Tuesday afternoon. These are very lengthy in-depth appointments but we are very excited to see what the neurologist has to say since he has not seen Lexi for almost 2 months!
Prayer Requests: We are thankful for Lexi's progress with eating as she takes about 10 mls on a regular basis for each feeding. Please pray she continues to work on her eating pattern and develop endurance. Pray for our appointment at Cleveland Clinic. We are very anxious about the appointment. Also pray that Lexi does well in her car seat. She typically screams the entire trip. Pray that her new therapies work well!
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