Unfortunately, Tuesday's eye exam didn't go well for the Fighter. Not only is his left eye worsening, but the right, which has been stable for the past month, is worse also. Dr. Varenhorst will continue to check him weekly for the time being and later consider a more invasive surgery involving surgically reattaching the retina. Another surgery would mean long anesthesia time, re-intubation and, due to the vascularity of his eyes, the possibility of hemorrhaging. I will continue to update you on his condition and in the meantime ask for your prayers that Jacob will come through this with enough vision to function.
Mommy News: Today I officially resigned as proofreader for Feist Publications, Inc. Though I greatly enjoyed my job and those that I worked with, I decided to pursue an opportunity that would allow me to work from home. I work for www.insitemotion.com as the Senior Editor. After training is completed, I will be working 75% of the time from home. I feel very blessed.
Wednesday, January 28, 2004
Monday, January 26, 2004
January 26, 2004
No updates in a week? I'm a terrible Mom! No, I'm kidding! We had some major problems going on with our computer, which prevented me from editing the site. Forgive me and please read on for the lasted on the Fighter.
At 8lbs, the Fighter is doing great! Though he's nearing his 5-month birthday, he has just started acting like a newborn baby. Sleep through the night? No, not Jacob. But that's ok! He can sleep whenever he wants. We all know that's not the best way to get him on a schedule, but after all he's been through, why not let him do whatever he wants? After all, he deserves it.
- Jacob had an eye exam last Monday, which went well. His left eye, the one the Scleral Buckling surgery was performed on, isn't improving. The right eye on the other hand, is looking good. He will visit with Dr. Varenhorst again Jan 27th and will most likely continue weekly visits.
On Sunday, January 25th, a "thank you" note printed in the Wichita Eagle, Wichita's newspaper, thanking the staff of Wesley Medical Center's NICU for all they did for Jacob. The note read, "To the staff of Wesley Medical Center's NICU; Words cannot express our gratitude for your medical expertise and emotional support during the most difficult time of our lives. Because of you, our son, a 24-week preemie, is home healthy today. God bless you all. Sincerely, Brett and Trish Smith." Saying thank you in the newspaper was the least I could do for the people that kept my son alive and kept Brett and I emotionally stable. They are truly amazing.
At 8lbs, the Fighter is doing great! Though he's nearing his 5-month birthday, he has just started acting like a newborn baby. Sleep through the night? No, not Jacob. But that's ok! He can sleep whenever he wants. We all know that's not the best way to get him on a schedule, but after all he's been through, why not let him do whatever he wants? After all, he deserves it.
- Jacob had an eye exam last Monday, which went well. His left eye, the one the Scleral Buckling surgery was performed on, isn't improving. The right eye on the other hand, is looking good. He will visit with Dr. Varenhorst again Jan 27th and will most likely continue weekly visits.
On Sunday, January 25th, a "thank you" note printed in the Wichita Eagle, Wichita's newspaper, thanking the staff of Wesley Medical Center's NICU for all they did for Jacob. The note read, "To the staff of Wesley Medical Center's NICU; Words cannot express our gratitude for your medical expertise and emotional support during the most difficult time of our lives. Because of you, our son, a 24-week preemie, is home healthy today. God bless you all. Sincerely, Brett and Trish Smith." Saying thank you in the newspaper was the least I could do for the people that kept my son alive and kept Brett and I emotionally stable. They are truly amazing.
Wednesday, December 31, 2003
December 31, 2003
Unfortunately, Jacob's eye exam didn't bring good results. Both of his eyes have gotten worse. Dr. Varenhorst's partner, Dr. Dalla, performed the exam. He consulted Dr. Varenhorst who is in Iowa for the week. He will be returning to Wichita late Wed night and will be in first thing Thurs to check Jacob's eyes. He will most likely need surgery on both eyes to help prevent vision loss. Once I talk to Dr. V in person I will be able to share more.
On a lighter note, Jacob did well with his feelings today. He took all 180 ccs by bottle in the 12-hour period. If he can keep it up, that tube will stay out of his little nose for good! He looks great without tubes and tape on his face.
On a lighter note, Jacob did well with his feelings today. He took all 180 ccs by bottle in the 12-hour period. If he can keep it up, that tube will stay out of his little nose for good! He looks great without tubes and tape on his face.
Tuesday, December 30, 2003
December 30, 2003
12:30pm - During my visit last night, I was able to speak with Dr. Roan about Jacob. His main concern right now is his eye condition. Duh! I expressed my concern with him about the exam and that I would be very upset if it wasn't going to happened today. He understood my concern but doesn't have control of their schedule. I can totally understand that, I just don't want them waiting too long and letting his eye possibly get worse. When I got to work this morning, I called Dr. Varenhorst's office to find out whether or not they were going to see him today. (Yes, I have become very impatient when it comes to my boy!) The receptionist took my name and number and said she would have someone call me. Well, here it is almost 4 hours later and nobody has called me. Come to find out, Dr. Dorn, the Neonatologist on-call today, called Dr. Varenhorst's office also and found out they won't be in to check him until tomorrow. I'm ok with that; at least they aren't pushing it further.
Another change is being made with Jacob's feedings. At 11am they decided to pull the ng tube (actually, Jacob took care of that on his own....little bugger) and start on-demand feedings. Over the next 12 hours Jacob can eat as much and as often as he wants as long as he takes in at least 180 ccs (about 6 ounces) and allowing no more than 4 hours between each feeding. So, it's up to the fighter to start showing his stuff. He needs to wake up, cry, squirm, and say, "Feed me!" Ok, so we all know he won't say that, but you get the idea.
4:30pm - Alrighty then...change of plans. They will be checking Jacob's eyes today. Right as I type this in fact. Soon after I spoke with Jacob's nurse earlier, the eye Dr's office called to say they'd make it in and to start dilating the baby's eyes. Great. I didn't find this out until 30 minutes ago. Oh well, no matter when I found out, at least I found out. I will add an update this evening when I get the results. I don't know if the eye doc will call me or if I will wait and hear when I get up there after work. Please say another prayer for the Fighter.
Another change is being made with Jacob's feedings. At 11am they decided to pull the ng tube (actually, Jacob took care of that on his own....little bugger) and start on-demand feedings. Over the next 12 hours Jacob can eat as much and as often as he wants as long as he takes in at least 180 ccs (about 6 ounces) and allowing no more than 4 hours between each feeding. So, it's up to the fighter to start showing his stuff. He needs to wake up, cry, squirm, and say, "Feed me!" Ok, so we all know he won't say that, but you get the idea.
4:30pm - Alrighty then...change of plans. They will be checking Jacob's eyes today. Right as I type this in fact. Soon after I spoke with Jacob's nurse earlier, the eye Dr's office called to say they'd make it in and to start dilating the baby's eyes. Great. I didn't find this out until 30 minutes ago. Oh well, no matter when I found out, at least I found out. I will add an update this evening when I get the results. I don't know if the eye doc will call me or if I will wait and hear when I get up there after work. Please say another prayer for the Fighter.
Monday, December 29, 2003
December 29, 2003
8:40am - Oh boy, I just love Monday morning! Ok, not really! Anyway, Jacob's MRI came back normal. The report never printed out so I had to look at his daily progress notes to find out the results. Another hurtle overcome. Now we wait patiently and anxiously for tomorrow’s eye exam. Since the stage his left eye is at, 4a, is partial detachment of the retina, I doubt things look better. I could be wrong though. This may sound terrible, but if in the end he ends up with one good eye (with central vision) things will be ok. He can fully function even if he loses sight in one eye. I hate to think about the possibility, but I have to make light of a difficult situation.
He didn't gain any weight yesterday, but he didn't lose either. He is bottling well only being tube fed when he's very sleepy. Today Dr. Roan is returning from a long holiday weekend, so I hope to get a better idea of homecoming when I talk with him. I'm sure the results of tomorrow's eye exam will play a roll in that decision too.
2:50pm - I spoke with Jacob's morning nurse a few hours ago. He has bottled well since midnight, only feeding once through the NG tube at 2am. I haven't talked to anyone about his 2pm feeding though. During rounds this morning, Dr. Knight, a pediatric surgeon, was consulted about a possible hernia in Jacob's scrotum. He also looked at his very "outie" belly button. Though no official report was given, the nurse said he didn't seem too concerned. I will learn more when I visit this evening.
I called Dr. Varenhorst's office today and spoke with someone (A nurse or receptionist, I'm not sure which) regarding Jacob's upcoming exam. I found out that Dr. Varenhorst is out of the office until next week. When I heard that I thought,”Uhm, excuse me?" Before I spoke up, she said one of Dr. Varenhorst's partners would take care of exams while he's out. Yeah, they better!! Or else!!
He didn't gain any weight yesterday, but he didn't lose either. He is bottling well only being tube fed when he's very sleepy. Today Dr. Roan is returning from a long holiday weekend, so I hope to get a better idea of homecoming when I talk with him. I'm sure the results of tomorrow's eye exam will play a roll in that decision too.
2:50pm - I spoke with Jacob's morning nurse a few hours ago. He has bottled well since midnight, only feeding once through the NG tube at 2am. I haven't talked to anyone about his 2pm feeding though. During rounds this morning, Dr. Knight, a pediatric surgeon, was consulted about a possible hernia in Jacob's scrotum. He also looked at his very "outie" belly button. Though no official report was given, the nurse said he didn't seem too concerned. I will learn more when I visit this evening.
I called Dr. Varenhorst's office today and spoke with someone (A nurse or receptionist, I'm not sure which) regarding Jacob's upcoming exam. I found out that Dr. Varenhorst is out of the office until next week. When I heard that I thought,”Uhm, excuse me?" Before I spoke up, she said one of Dr. Varenhorst's partners would take care of exams while he's out. Yeah, they better!! Or else!!
Friday, December 26, 2003
December 26, 2003
12:00am - We had a very Merry Christmas!! On Tuesday Brett went to Dodge City, Kansas (about 2 1/2 hrs W of Wichita) to visit his parents and came back Wednesday with many wonderful gifts for us and for Jacob! Bill and Reatha were very generous this Christmas!
Yesterday, after taking some gifts to my family, I went to the hospital to spend the evening with Jacob. (Brett stayed home to sleep because he worked the night before). I brought with me his "First Christmas" outfit to put on him for pictures. Well, he could have worn it longer had his Mommy not left him open to the air so long during a diaper change. Oops! The pictures turned out good though, with the help of Nurse Pat. Check them out in the Yahoo album at: http://photos.yahoo.com/dyslpr_1976.
I bottle fed the Fighter at 5pm and 8pm yesterday and he took the whole thing both times in under 30 minutes! Good boy! I am very proud of him. A few pre-discharge orders were written early yesterday. A second hearing test, an MRI (for the history of seizures) and a car seat check. At this point, his discharge date will depend on how his eye exam goes next week. His bottling is getting better but not good enough to go home yet, so a few extra days won't hurt. He took 6 out of 8 bottles yesterday so he's getting there. And going by his original (estimated) due date, he is two days old today! That means the Fighter was 111 days early! Wow, he has come a long way!
12:40pm - Jacob went for his MRI early this morning. He did very well and we should know the results later today or tomorrow. He bottled well overnight and at 11am this morning. They didn't bottle him at 8am because of the MRI. I am going in today at 2pm to bottle him and probably again this evening. He's really picking up on it. I am very, very proud of him!
Yesterday, after taking some gifts to my family, I went to the hospital to spend the evening with Jacob. (Brett stayed home to sleep because he worked the night before). I brought with me his "First Christmas" outfit to put on him for pictures. Well, he could have worn it longer had his Mommy not left him open to the air so long during a diaper change. Oops! The pictures turned out good though, with the help of Nurse Pat. Check them out in the Yahoo album at: http://photos.yahoo.com/dyslpr_1976.
I bottle fed the Fighter at 5pm and 8pm yesterday and he took the whole thing both times in under 30 minutes! Good boy! I am very proud of him. A few pre-discharge orders were written early yesterday. A second hearing test, an MRI (for the history of seizures) and a car seat check. At this point, his discharge date will depend on how his eye exam goes next week. His bottling is getting better but not good enough to go home yet, so a few extra days won't hurt. He took 6 out of 8 bottles yesterday so he's getting there. And going by his original (estimated) due date, he is two days old today! That means the Fighter was 111 days early! Wow, he has come a long way!
12:40pm - Jacob went for his MRI early this morning. He did very well and we should know the results later today or tomorrow. He bottled well overnight and at 11am this morning. They didn't bottle him at 8am because of the MRI. I am going in today at 2pm to bottle him and probably again this evening. He's really picking up on it. I am very, very proud of him!
Wednesday, December 24, 2003
December 24, 2003 - Christmas Eve
I checked out Jacob's chart last night and found out the one eye is at stage 4a, which means the retina has already partially detached. He will most likely need more surgery and has a chance of losing his vision in that eye. What to do next will be determined Tuesday when Dr. Varenhorst checks his eyes again. Let us pray things get better.
Pat's idea didn't go over too well. She suggested I come in and bottle a few times in a row to get used to things instead of trying to go to mother/baby this weekend. That way, when he is ready for mother/baby I will be more prepared and some-what used to bottling him. So today, I will go in at 2pm, 5pm and 8pm to bottle him. I get off work at 12pm so it works out.
Pat's idea didn't go over too well. She suggested I come in and bottle a few times in a row to get used to things instead of trying to go to mother/baby this weekend. That way, when he is ready for mother/baby I will be more prepared and some-what used to bottling him. So today, I will go in at 2pm, 5pm and 8pm to bottle him. I get off work at 12pm so it works out.
Subscribe to:
Posts (Atom)