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.
Wednesday, December 31, 2003
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.
Tuesday, December 23, 2003
December 23, 2003
I knew I shouldn't have gotten my hopes up! One of Jacob's eyes has gotten worse (the other has stayed the same). This means he won't be able to come home by the 28th like they thought early this morning. The 28th was the "magic number" as one nurse called it. He has to stay until his eyes are checked again next Tue in case they are worse and need surgery again. If they are the same or better, we should be able to bring him home. That's if everything else is still going well.
During my visit this afternoon, I spoke with Jacob's evening nurse Pat. She said that maybe they would let us go to Mother/Baby Sunday and Monday to get used to things, and then see what happens Tues with his eye exam. Either he'd go back to the NICU for surgery or he would get to come home. At least we would have gotten the Mother/baby part of out the way to get used to caring for him and bottling him, etc. She told me not to get my hopes up because she doesn't know if they would do something like that. It sounds great to me!! =)
During my visit this afternoon, I spoke with Jacob's evening nurse Pat. She said that maybe they would let us go to Mother/Baby Sunday and Monday to get used to things, and then see what happens Tues with his eye exam. Either he'd go back to the NICU for surgery or he would get to come home. At least we would have gotten the Mother/baby part of out the way to get used to caring for him and bottling him, etc. She told me not to get my hopes up because she doesn't know if they would do something like that. It sounds great to me!! =)
Monday, December 22, 2003
December 22, 2003 -
9:50am - Oh boy, our little Fat Cow is picking up on bottling fast! It will be no time at all before he comes home! He's already had three bottles today. One at 2am another at 5am and the latest at 8am! Each time he took the entire bottle - in 12 minutes at 5am! Wow! In my last entry, I motioned some notes written on Jacob's chart regarding his latest eye exam. The words were "Nasal Regression." I thought that meant a step back, when in fact it means a step forward. When it says regression, it means a regression of the problem, not of his eye condition. The ROP has gotten better in one eye and there is still no change in the other. Of course, I don't remember which is which. He will continue checking him once a week. So, good news all around with our little Fighter!
Tomorrow night I will be taking an infant CPR class. The class is required before they will release Jacob from the hospital. Brett and I signed up to take the class next Tues (the 30th) but since he's so close to coming home we moved it up to this week. Brett will be going to his parents house in Dodge City that night, so I will be taking the class alone to be prepared if he's ready to come home in the next few days. He will go to Mother-Baby for a day or two before that, but we would rather be ready instead of putting homecoming off to take the class. I am so overjoyed and excited! Shoot, I had better get his room finished! Yikes!
7:30pm - Oh Boy, Oh Boy, Oh Boy.......He is SOOO close!!! I talked with Dr. Roan when I was in this afternoon and he thinks Jacob will be ready to come home within the next week!!!!! He will probably come home with oxygen to use during feedings, as well a monitor to use for a few months. He has taken all but one of his bottles so far today. That's 2am, 5am, 8am, 2pm and 5pm. They gave him a break at 11am and at 8pm tonight, they will try if he seems awake enough. It could be just a few more days until he's ready for Mother Baby! I am taking an infant CPR class tomorrow night!! He took a picture with Santa today! It came out so nice! Unfortunately, Santa came and went before I got to the hospital so I didn't get any on my camera...just the Polaroid the hospital took. I will try to get it scanned and online soon!
Brett and I went to Wal-Mart this evening and bought a few more things for Jacob and some last minute Christmas gifts. We bought a dresser for Jacob, bottle cleaner, a big fat pack of wipes, a car window visor and...Uhm...I think that was it. Oh, wait a KU hat! Yay!
Tomorrow night I will be taking an infant CPR class. The class is required before they will release Jacob from the hospital. Brett and I signed up to take the class next Tues (the 30th) but since he's so close to coming home we moved it up to this week. Brett will be going to his parents house in Dodge City that night, so I will be taking the class alone to be prepared if he's ready to come home in the next few days. He will go to Mother-Baby for a day or two before that, but we would rather be ready instead of putting homecoming off to take the class. I am so overjoyed and excited! Shoot, I had better get his room finished! Yikes!
7:30pm - Oh Boy, Oh Boy, Oh Boy.......He is SOOO close!!! I talked with Dr. Roan when I was in this afternoon and he thinks Jacob will be ready to come home within the next week!!!!! He will probably come home with oxygen to use during feedings, as well a monitor to use for a few months. He has taken all but one of his bottles so far today. That's 2am, 5am, 8am, 2pm and 5pm. They gave him a break at 11am and at 8pm tonight, they will try if he seems awake enough. It could be just a few more days until he's ready for Mother Baby! I am taking an infant CPR class tomorrow night!! He took a picture with Santa today! It came out so nice! Unfortunately, Santa came and went before I got to the hospital so I didn't get any on my camera...just the Polaroid the hospital took. I will try to get it scanned and online soon!
Brett and I went to Wal-Mart this evening and bought a few more things for Jacob and some last minute Christmas gifts. We bought a dresser for Jacob, bottle cleaner, a big fat pack of wipes, a car window visor and...Uhm...I think that was it. Oh, wait a KU hat! Yay!
Subscribe to:
Posts (Atom)