Sunday, December 2, 2007
Halloween 2007
We took Kyle out for Halloween this year. He was a caterpillar. Hannah was a superhero. Here's some pics....
Lots of Updates
The car we got from my classmate worked well for a month or two and then quit out on us. We thought we'd just have to go back to how things were (me dropping Chris off at work each morning before going to school and him taking the bus home) but then a couple with a child in therapy with Kyle offered us a '97 Honda Accord for free. The Honda has been a real blessing. Right now it's having electrical problems but we're getting them fixed for a whole lot less than it would have cost for an entire car and we should have it back middle of this week. The Kia has also been a bit temperamental. There was a problem with the heating core but Chris and Steve Eloshway fixed it.
I'm still pregnant, of course. We had a bit of trouble getting on the medicaid for pregnant women but we've finally got it so I'm seeing Dr. Igel for my prenatal care. Last Tuesday, they did a comprehensive ultrasound including fetal echo. This is the second ultrasound. At the first ultrasound they ruled out twins and adjusted the due date to April 22nd, 2008. From the recent ultrasound, it looks like a girl (from the butt shot she gave them). Her first name will be Audrey. We're still debating about the middle name. Everything is going really well. They plan to schedule me for C-section a week before the due date (April 15, 2008).
School's still going well. Other than one B in Cardiac Pathology II, I've been maintaining all A's. We started our integrated clinicals which means I'm going to a clinical site once a week to observe and assist an actual tech. I am with a mobile tech who goes to several different sites during the week to do echos as well as general ultrasound. Who knows? Maybe when I'm settled in this career, I might cross-train for general. Six month full externship is supposed to start March 4th, but because of the baby, I'll be starting full externship after I recover from the C-section. Then six more months and I can graduate. I'm hoping to be able to extern at a pediatric cardiologist for my full externship since that's the specialty I want to be in.
We are still planning the Christmas party for this year. It will be December 22nd in the clubhouse here. We're just working out the details for the invites. As always, all are invited.
Hannah's been growing quickly and learning a lot. Kyle still gets his feedings from a tube. He's quite stubborn in that department. He's in speech/feeding therapy for that. He is able to roll over and stay sitting up if sat up by someone else. He's still not crawling, but we're working on it with physical and occupational therapy. It's all more about sensory input than physical capability. He can't take much sensory input. If there's a loud sudden noise by him, he screams worse than if he's hurt. He's learning new words every day though. He claps and says "clap" or "yea". He says Hannah, Mommy, Dadda, Nana, tickle, go, open, baby, Kyle, no, nap, nite-nite, hello ("ello"), etc. Cutest things so far is when he moves his fingers on you and says "tickle, tickle, tickle" and when he picks up a phone (real or fake), holds it up to his ear and says "ello".
I'm still pregnant, of course. We had a bit of trouble getting on the medicaid for pregnant women but we've finally got it so I'm seeing Dr. Igel for my prenatal care. Last Tuesday, they did a comprehensive ultrasound including fetal echo. This is the second ultrasound. At the first ultrasound they ruled out twins and adjusted the due date to April 22nd, 2008. From the recent ultrasound, it looks like a girl (from the butt shot she gave them). Her first name will be Audrey. We're still debating about the middle name. Everything is going really well. They plan to schedule me for C-section a week before the due date (April 15, 2008).
School's still going well. Other than one B in Cardiac Pathology II, I've been maintaining all A's. We started our integrated clinicals which means I'm going to a clinical site once a week to observe and assist an actual tech. I am with a mobile tech who goes to several different sites during the week to do echos as well as general ultrasound. Who knows? Maybe when I'm settled in this career, I might cross-train for general. Six month full externship is supposed to start March 4th, but because of the baby, I'll be starting full externship after I recover from the C-section. Then six more months and I can graduate. I'm hoping to be able to extern at a pediatric cardiologist for my full externship since that's the specialty I want to be in.
We are still planning the Christmas party for this year. It will be December 22nd in the clubhouse here. We're just working out the details for the invites. As always, all are invited.
Hannah's been growing quickly and learning a lot. Kyle still gets his feedings from a tube. He's quite stubborn in that department. He's in speech/feeding therapy for that. He is able to roll over and stay sitting up if sat up by someone else. He's still not crawling, but we're working on it with physical and occupational therapy. It's all more about sensory input than physical capability. He can't take much sensory input. If there's a loud sudden noise by him, he screams worse than if he's hurt. He's learning new words every day though. He claps and says "clap" or "yea". He says Hannah, Mommy, Dadda, Nana, tickle, go, open, baby, Kyle, no, nap, nite-nite, hello ("ello"), etc. Cutest things so far is when he moves his fingers on you and says "tickle, tickle, tickle" and when he picks up a phone (real or fake), holds it up to his ear and says "ello".
Saturday, August 18, 2007
Car Blessings
The few days after the car died were interesting. Chris and I both woke up an hour early so that I could drive him to work in downtown Clearwater and then drive myself to Tampa. This got Chris to work a full hour before he had to be and at the end of the day his boss was giving him a ride home from work so he had to stay a little late to wait for her.
Then Thursday came. My classmate Scott asked me if we had resolved our transportation issue and I told him how we were managing it. He told me he had a car that he would like to GIVE me! I felt completely stunned. I couldn't believe what I was hearing. Sure enough, we made arrangements for Saturday to go to Naples to pick up the car. His reasoning for giving me the car was that it was a "karma thing" and he was just "God's mule". Saturday morning, Jenn joined me and Scott for a road trip. (Naples is officially the farthest south I've ever been.) We drove out to Naples and picked up the 1988 Cadillac Fleetwood. It was a little tempermental to start out since it hadn't been driven but once in a full year. But once the dust shook off the engine, it proved to be a real sturdy, reliable car.
We are so blessed to have people in our life like Scott who see a need and fill it. Many people would have tried to get some money for such a good car, but he just wanted it to go to someone who needed it.
Then Thursday came. My classmate Scott asked me if we had resolved our transportation issue and I told him how we were managing it. He told me he had a car that he would like to GIVE me! I felt completely stunned. I couldn't believe what I was hearing. Sure enough, we made arrangements for Saturday to go to Naples to pick up the car. His reasoning for giving me the car was that it was a "karma thing" and he was just "God's mule". Saturday morning, Jenn joined me and Scott for a road trip. (Naples is officially the farthest south I've ever been.) We drove out to Naples and picked up the 1988 Cadillac Fleetwood. It was a little tempermental to start out since it hadn't been driven but once in a full year. But once the dust shook off the engine, it proved to be a real sturdy, reliable car.
We are so blessed to have people in our life like Scott who see a need and fill it. Many people would have tried to get some money for such a good car, but he just wanted it to go to someone who needed it.
One's on the way!
This could have easily gone under the drama post, too, but I thought it should get a post all its own.
Being two weeks late, I decided to take a pregnancy test just to be sure. I didn't think it would actually be positive. I picked up the cheapy off brand test from the store. After taking the test, I could see a faint line where there shouldn't have been but I thought, maybe it's just too cheap to give a clear negative. So I had Chris pick up the newest, most advanced pregnancy test -the new digital kind (As the commercial says, "it's the most advanced piece of technology... you will ever pee on"). There was not even a hint of "not" on the results. It was a clear, definitive "PREGNANT".
Needless to say, we're terrified.
I called around yesterday about getting an official pregnancy test so that I could get a note verifying the pregnancy for Medicaid and WIC. This is how I found out that the Pregnancy Center across the street from me with the big green sign saying "Free Pregnancy Tests" is actually a branch of the Pinellas County Pregnancy Center that I do the Walk-4-Life for every year. I had thought it was an abortion clinic because when I looked up pregnancy centers in my zip code, it came up with an abortion clinic across the street. There is an abortion clinic... It's behind the Pregnancy Center.
So I was able to get a free pregnancy test with a letter of confirmation to bring to Medicaid and WIC. My due date is estimated at March 28, 2008. My sister is pulling for March 31st (her birthday). I'm just pulling for a nine-month pregnancy! I've got to admit, I also would like a girl. It's so much easier for me to come up with girl names than boy names. I had a tough time coming up with four (Kyle, Robert, Frederic, & Dean) and now I'm all out of boy names.
Drama
Well, when I named Kyle I knew that "handsome, bright fame" would be the perfect meaning of his name. I could tell he was going to be a drama king.
Thursday night, my mom called me in a panic just as I was getting off work at 7:00pm. Kyle had yanked on his feeding tube and finally succeeded in pulling out the Mic-Key button (the part that is actually inserted into the stomach). I told my mom it wasn't that big of a deal. The nurses had all told us that it was likely to happen. They had explained that if the "peg" came out, we needed to get to the closest emergency room within an hour to be sure they could put in a new peg before the hole sealed up but as long as there was not a lot of blood, not to worry.
So Mom packed up the kids and headed to the Countryside Mease Hospital Emergency Room. I managed to get there just a couple of minutes after they did and Chris arrived a couple of minutes after that. But we waited another half hour before they called Kyle back.
I was seriously disappointed in the emergency room at this hospital. Maybe I've just been spoiled by All Children's Hospital but when we're brought into a patient room, I expect a hospital bed. I do NOT expect to see bloody gauze on the floor! We had a couple of nurses come in, each asking why he was on a feeding tube in the first place and who seemed to be confused by the whole concept of a Mic-Key button. One even asked if he pulled it out of his nose. I explained that it was not a NASOgastric tube.
After nearly three hours in the room without seeing an actual doctor and with nurses saying that they didn't know if even their pediatric floor had Mic-Key buttons, I was pushed to my limit. I called Kyle's pediatric gastroenterologist's on-call doctor. The timing was great. Just as the doctor finally came in, I was talking on the phone with the nurse practitioner from GI. She told me that what they had to do was to put in a foley catheter to hold the hole open and to use as a feeding tube for that night and I would need to go in to have the hole dilated the next day to put in another Mic-Key button. I handed the phone over to the doctor so they could repeat what they had told me. He was saying how hesitant he was to put in the foley since this wasn't something they were accustomed to doing and he was concerned that damage may have been done when the button was pulled out but the GI nurse practioner explained the process.
So, three hours after the button was pulled out, they finally brought in a foley catheter to put in its place. The doctor first tried the 14 french size (the size of the mic-key button) catheter but it was too big. The doctor commented that the hole was really small and I muttered that it was much wider when we got there. He finally was able to get the 12 french size catheter in. He insisted on putting some dye through the catheter and taking an X-ray to make sure the hole was still good and it wouldn't leak into the abdomen. Kyle was not amused. Dye does not rest easy on the stomach.
The X-ray techs were all impressed by how calm he was and how still he lay there while they took the X-rays. It was nothing new for him.
Yesterday morning I called the GI's office to see about bringing Kyle in for having the mic-key button put back in but I got a very different story about what to do. First, they told me that we had to order a new Mic-Key button and wait for it to come in the mail. Then, they said that since the doctor put in a 12-french catheter instead of 14-french, that we'd have to wiggle the catheter around twice a day for a week to dilate the hole before they could put in the new button. I do not feel comfortable going a week with this tiny foley catheter. There's really nothing to hold it in place (except for the ton of tape I have in place) and I'm worried that he'll pull this out too. One thing's for sure... If he does pull it out again, we're going straight to All Children's. The half hour extra drive is worth the extra timely care.
Thursday night, my mom called me in a panic just as I was getting off work at 7:00pm. Kyle had yanked on his feeding tube and finally succeeded in pulling out the Mic-Key button (the part that is actually inserted into the stomach). I told my mom it wasn't that big of a deal. The nurses had all told us that it was likely to happen. They had explained that if the "peg" came out, we needed to get to the closest emergency room within an hour to be sure they could put in a new peg before the hole sealed up but as long as there was not a lot of blood, not to worry.
So Mom packed up the kids and headed to the Countryside Mease Hospital Emergency Room. I managed to get there just a couple of minutes after they did and Chris arrived a couple of minutes after that. But we waited another half hour before they called Kyle back.
I was seriously disappointed in the emergency room at this hospital. Maybe I've just been spoiled by All Children's Hospital but when we're brought into a patient room, I expect a hospital bed. I do NOT expect to see bloody gauze on the floor! We had a couple of nurses come in, each asking why he was on a feeding tube in the first place and who seemed to be confused by the whole concept of a Mic-Key button. One even asked if he pulled it out of his nose. I explained that it was not a NASOgastric tube.
After nearly three hours in the room without seeing an actual doctor and with nurses saying that they didn't know if even their pediatric floor had Mic-Key buttons, I was pushed to my limit. I called Kyle's pediatric gastroenterologist's on-call doctor. The timing was great. Just as the doctor finally came in, I was talking on the phone with the nurse practitioner from GI. She told me that what they had to do was to put in a foley catheter to hold the hole open and to use as a feeding tube for that night and I would need to go in to have the hole dilated the next day to put in another Mic-Key button. I handed the phone over to the doctor so they could repeat what they had told me. He was saying how hesitant he was to put in the foley since this wasn't something they were accustomed to doing and he was concerned that damage may have been done when the button was pulled out but the GI nurse practioner explained the process.
So, three hours after the button was pulled out, they finally brought in a foley catheter to put in its place. The doctor first tried the 14 french size (the size of the mic-key button) catheter but it was too big. The doctor commented that the hole was really small and I muttered that it was much wider when we got there. He finally was able to get the 12 french size catheter in. He insisted on putting some dye through the catheter and taking an X-ray to make sure the hole was still good and it wouldn't leak into the abdomen. Kyle was not amused. Dye does not rest easy on the stomach.
The X-ray techs were all impressed by how calm he was and how still he lay there while they took the X-rays. It was nothing new for him.
Yesterday morning I called the GI's office to see about bringing Kyle in for having the mic-key button put back in but I got a very different story about what to do. First, they told me that we had to order a new Mic-Key button and wait for it to come in the mail. Then, they said that since the doctor put in a 12-french catheter instead of 14-french, that we'd have to wiggle the catheter around twice a day for a week to dilate the hole before they could put in the new button. I do not feel comfortable going a week with this tiny foley catheter. There's really nothing to hold it in place (except for the ton of tape I have in place) and I'm worried that he'll pull this out too. One thing's for sure... If he does pull it out again, we're going straight to All Children's. The half hour extra drive is worth the extra timely care.
Tuesday, July 24, 2007
What a day!
Yesterday started out on a heavy note just for being the day after the anniversary of Eric's death. From there, the day just went downhill. First of all, I forgot about a homework assignment that was due that morning. I had stuffed it behind another homework assignment that's due later in the month and I forgot all about it. So when I got to school and a classmate reminded me I tried to quickly complete the assignment but I did not get a chance to finish (or even really get halfway through) before the teacher gathered up the papers and she said that if I didn't hand it in right then, I wouldn't get any credit for it. This irritated me because it wasn't even a hard assignment. If I had had 10 more minutes, I would've had it done. So I was angry with myself that I had forgotten such an easy assignment (especially since I spent so much time during the weekend working on another assignment that's not due until next week).
That was just the beginning. Chris called me a little while later to inform me that the power had been shut off for non-payment. This wasn't surprising since we have been behind on all our bills this month. Chris has been out of work for a week and the check we get from All Children's to reimburse us for Kyle's health insurance each month was very late this month, so things have been pretty tight. We borrowed some money and were able to make the payment needed to turn the power back on but since it took a while, my mom took Hannah and Kyle to her place after Kyle's physical and speech therapy. My dad had been in the hospital during the morning for a procedure that ended in the removal of a small tumor.
Next, I had to call Kyle's pediatrician to get approval for switching him from Neosure formula to Pediasure as the nutritionist had recommended last week. However, they couldn't approve the change without Kyle coming in to see the pediatrician and I needed the approval before Wednesday's WIC appointment so I had to do some schedule juggling.
The real fun happened on the drive home, though. Before leaving school, I finally put a couple quarts of oil in the Civic (something I should have done long ago - the light's been on for a while), but apparently I was too late. There was a horrible rattling noise and just as I was getting on the Courtney Campbell Causeway, the engine died out. I managed to get it to start up again but it barely allowed me to pull to the curb before dying out again. One of the Florida Highway Road Rangers was kind enough to stop and help me try to figure out what was wrong with the car. He said it looked like it was just needing more oil so I called Chris to have him come with oil for the car. The Road Ranger had to be on his way so I waited for Chris to arrive.
When Chris got there, he put a couple more quarts of oil in the car but when we attempted to drive off, the car died out again - but this time, the engine had siezed up. We pushed the Civic(with the Kia) into the boat dock parking lot along the Courtney Campbell and called my dad. As much as we hated to disturb him while he was recovering from the procedure earlier that morning, my parents have roadside assistance on their cell phones that work on other people's cars. My dad, being my dad, didn't hesitate to come to our rescue, despite his own rough day. So Chris and I waited for my dad to arrive so that he could call a tow truck out for us while we got devoured by mosquitos.
During all this, I spoke to my mom and found out that she had grabbed the wrong power cord for Kyle's feeding pump and the battery had run out so Kyle had not gotten any formula since the start of his feeding at 5:00pm. This was around 9:30pm. (Kyle normally gets his overnight feeding from 9:00pm-7:00am.) So on top of everything else, I was feeling like a neglectful mother.
Apparently I was to blame for the death of the Civic, as well (vehicular homicide?). The engine had seized as a result of going too long with too little oil (so... vehicular negligent homicide?).
Then, on the way to meet us, my dad's car started overheating (low on water) so he just barely made it to where we were. I headed out in the Kia to get water for my dad's car from the Ben T Davis beach access water spigot. But, alas, it was past sunset and the beach access was closed so on an almost empty tank, I tried to find a gas station to get water at. Note: Courtney Campbell does NOT have convenient gas stations nearby! I had to head back emptyhanded for lack of enough gas.
Dad and Chris told me to go ahead and drive home to get the power cord and they'd meet me back at Mom and Dad's after dropping the Civic off at my uncle's auto shop. Just as I arrived at home and grabbed the power cord, Chris called me to tell me that between the boat dock and the auto shop, my dad had stopped at the gas station for water and his car has a tendency to autolock the doors at inopportune moments so his keys had been locked IN the car. This left Chris outside the auto shop in the rain and Dad at the gas station. So as soon as I got to my parent's house, I had to drop off the cord quickly (Mom had offered to keep the kids overnight since they were asleep anyway), borrow Mom's keys and run out again to rescue the guys. It seemed only fair since they had each rescued me that night. I picked up Chris at the shop and we dropped off the keys to my dad and managed to make it home after midnight without any more drama.
I kept low profile on my birthday, hoping to avoid a day of catastrophe like last year had been. It looks like it was just delayed a month and a half.
That was just the beginning. Chris called me a little while later to inform me that the power had been shut off for non-payment. This wasn't surprising since we have been behind on all our bills this month. Chris has been out of work for a week and the check we get from All Children's to reimburse us for Kyle's health insurance each month was very late this month, so things have been pretty tight. We borrowed some money and were able to make the payment needed to turn the power back on but since it took a while, my mom took Hannah and Kyle to her place after Kyle's physical and speech therapy. My dad had been in the hospital during the morning for a procedure that ended in the removal of a small tumor.
Next, I had to call Kyle's pediatrician to get approval for switching him from Neosure formula to Pediasure as the nutritionist had recommended last week. However, they couldn't approve the change without Kyle coming in to see the pediatrician and I needed the approval before Wednesday's WIC appointment so I had to do some schedule juggling.
The real fun happened on the drive home, though. Before leaving school, I finally put a couple quarts of oil in the Civic (something I should have done long ago - the light's been on for a while), but apparently I was too late. There was a horrible rattling noise and just as I was getting on the Courtney Campbell Causeway, the engine died out. I managed to get it to start up again but it barely allowed me to pull to the curb before dying out again. One of the Florida Highway Road Rangers was kind enough to stop and help me try to figure out what was wrong with the car. He said it looked like it was just needing more oil so I called Chris to have him come with oil for the car. The Road Ranger had to be on his way so I waited for Chris to arrive.
When Chris got there, he put a couple more quarts of oil in the car but when we attempted to drive off, the car died out again - but this time, the engine had siezed up. We pushed the Civic(with the Kia) into the boat dock parking lot along the Courtney Campbell and called my dad. As much as we hated to disturb him while he was recovering from the procedure earlier that morning, my parents have roadside assistance on their cell phones that work on other people's cars. My dad, being my dad, didn't hesitate to come to our rescue, despite his own rough day. So Chris and I waited for my dad to arrive so that he could call a tow truck out for us while we got devoured by mosquitos.
During all this, I spoke to my mom and found out that she had grabbed the wrong power cord for Kyle's feeding pump and the battery had run out so Kyle had not gotten any formula since the start of his feeding at 5:00pm. This was around 9:30pm. (Kyle normally gets his overnight feeding from 9:00pm-7:00am.) So on top of everything else, I was feeling like a neglectful mother.
Apparently I was to blame for the death of the Civic, as well (vehicular homicide?). The engine had seized as a result of going too long with too little oil (so... vehicular negligent homicide?).
Then, on the way to meet us, my dad's car started overheating (low on water) so he just barely made it to where we were. I headed out in the Kia to get water for my dad's car from the Ben T Davis beach access water spigot. But, alas, it was past sunset and the beach access was closed so on an almost empty tank, I tried to find a gas station to get water at. Note: Courtney Campbell does NOT have convenient gas stations nearby! I had to head back emptyhanded for lack of enough gas.
Dad and Chris told me to go ahead and drive home to get the power cord and they'd meet me back at Mom and Dad's after dropping the Civic off at my uncle's auto shop. Just as I arrived at home and grabbed the power cord, Chris called me to tell me that between the boat dock and the auto shop, my dad had stopped at the gas station for water and his car has a tendency to autolock the doors at inopportune moments so his keys had been locked IN the car. This left Chris outside the auto shop in the rain and Dad at the gas station. So as soon as I got to my parent's house, I had to drop off the cord quickly (Mom had offered to keep the kids overnight since they were asleep anyway), borrow Mom's keys and run out again to rescue the guys. It seemed only fair since they had each rescued me that night. I picked up Chris at the shop and we dropped off the keys to my dad and managed to make it home after midnight without any more drama.
I kept low profile on my birthday, hoping to avoid a day of catastrophe like last year had been. It looks like it was just delayed a month and a half.
Sunday, July 22, 2007
One year later...
All month, I've been flooded with flashbacks... what was I doing last year at this time?...
If I had known I would be reliving it, I would have spent less of my time on bed rest watching Fresh Prince of Belaire on Nick at Nite. It's very odd to think that I get emotional from the Fresh Prince.
I flash back to goodnight kisses from Hannah, one for me, one for her brothers (on my belly) -rolling my eyes at yet another amnio-reduction like it was no big thing - laughing with my sister over magazine horoscopes - eating delicious food made by the ladies from church, my sister, my mom's Bible study group - waking up in the middle of the night so my sister could hand me medications and milk - shopping at Motherhood clothing with gift cards from friends, barely able to try on one pair of pants before feeling winded...
So many memories that built up to the hardest memory of all - saying goodbye to my newborn baby. It was one year ago today. Last year at this time, a kind nurse was holding me, praying and crying with me as I dealt with the news that my boy most likely wouldn't live through another day, trying to give me hope that a miracle could still happen.
This day is going to be hard for me, I know. Tears are falling already and it's only 45 minutes into the day. Just wait until the time comes around 8:00pm at the moment that last year I said my last words to my baby boy: "Hope you like cribbage, 'cause your great-grandfather is going to be wanting a game with you as soon as you get through the gates".
Eric was the thirteenth great-grandchild for both my grandmothers. I was originally given a due date of Friday, October 13th, 2006. Those who are superstitious say that the number 13 is unlucky. Well, for me, 13 will always be a very special number because of my little boy - My "Lucky 13".
If I had known I would be reliving it, I would have spent less of my time on bed rest watching Fresh Prince of Belaire on Nick at Nite. It's very odd to think that I get emotional from the Fresh Prince.
I flash back to goodnight kisses from Hannah, one for me, one for her brothers (on my belly) -rolling my eyes at yet another amnio-reduction like it was no big thing - laughing with my sister over magazine horoscopes - eating delicious food made by the ladies from church, my sister, my mom's Bible study group - waking up in the middle of the night so my sister could hand me medications and milk - shopping at Motherhood clothing with gift cards from friends, barely able to try on one pair of pants before feeling winded...
So many memories that built up to the hardest memory of all - saying goodbye to my newborn baby. It was one year ago today. Last year at this time, a kind nurse was holding me, praying and crying with me as I dealt with the news that my boy most likely wouldn't live through another day, trying to give me hope that a miracle could still happen.
This day is going to be hard for me, I know. Tears are falling already and it's only 45 minutes into the day. Just wait until the time comes around 8:00pm at the moment that last year I said my last words to my baby boy: "Hope you like cribbage, 'cause your great-grandfather is going to be wanting a game with you as soon as you get through the gates".
Eric was the thirteenth great-grandchild for both my grandmothers. I was originally given a due date of Friday, October 13th, 2006. Those who are superstitious say that the number 13 is unlucky. Well, for me, 13 will always be a very special number because of my little boy - My "Lucky 13".
Thursday, July 19, 2007
Birthday Boy!
Can you believe it? Kyle is a year old today!
He's been doing really well since the fundoplication surgery. He's been home except for therapy sessions and check-ups. In "speech" therapy (feeding therapy), he's been progressing slowly but surely and he now takes small amounts of baby food. He makes horrible faces and gets most of it up his nose it seems but he gets some of it down. In physical therapy, we're trying to get him to where he can crawl or at least sit up for a while. It's a big difference from Hannah's first year. She was already walking by 9 months old. But considering all he's been through, it's amazing how well he's progressing.
I know a lot of people may be expecting a birthday party for Kyle but considering he's not quite up to eating, the cake seems a little pointless and he is not a big fan of the outdoors so the park is out of the question. Besides, with Chris out of work all week, finances are a little scant, I'm loaded up with projects and homework for school, and of course the arrival of Kyle's birthday means we're coming up on the anniversary of Eric's death. Next year we'll just have to do a real blow-out for his 2nd birthday party.
He's been doing really well since the fundoplication surgery. He's been home except for therapy sessions and check-ups. In "speech" therapy (feeding therapy), he's been progressing slowly but surely and he now takes small amounts of baby food. He makes horrible faces and gets most of it up his nose it seems but he gets some of it down. In physical therapy, we're trying to get him to where he can crawl or at least sit up for a while. It's a big difference from Hannah's first year. She was already walking by 9 months old. But considering all he's been through, it's amazing how well he's progressing.
I know a lot of people may be expecting a birthday party for Kyle but considering he's not quite up to eating, the cake seems a little pointless and he is not a big fan of the outdoors so the park is out of the question. Besides, with Chris out of work all week, finances are a little scant, I'm loaded up with projects and homework for school, and of course the arrival of Kyle's birthday means we're coming up on the anniversary of Eric's death. Next year we'll just have to do a real blow-out for his 2nd birthday party.
Stones
Chris is battling yet another kidney stone. It hit him hard late last week and he's been out of work all week because of it. He thinks it's almost ready to pass now. He's pretty much a veteran at passing kidney stones... now if we could just prevent them from coming in the first place...
Monday, July 2, 2007
Monday, June 18, 2007
No More Projectile!
Kyle had the fundoplication surgery on Wednesday (6/13/07) afternoon. His surgery started at around 1:30 and lasted about two hours so he was just getting to recovery when I got there from school. Perfect timing!
When they brought him up to his room (3NW), he was still a little groggy from the anesthesia and definitely a little grumpy but a little Tylenol did the trick to make him more comfortable. One of his NICU "girlfriends" (a nurse named Kelly) came to see him while we were there and mentioned that she had recently found out that her own mother had had fundoplication as a baby and has not had any serious problems caused by it. It was good to hear of someone with long-term experience of the procedure since most of what I found was about children under 5 years old.
Thursday night, after work, Chris went to seek Kyle and he said that Kyle was a little more cheerful, smiling now and then with only a bit of residual grumpiness. Friday afternoon, I went to see him and he was back to his smiley self. He had a couple of fussy moments when he would move certain ways but overall, he was smiling up a storm! Saturday afternoon, I went to see him again (bringing along a new friend I had met earlier that day) and the nurses were saying how he was almost up to where he needed to be for discharge. I didn't get my hopes up though because they normally don't discharge him on weekend days.
Yesterday morning (6/17/07), though, we got a call from All Children's saying that we could pick him up! What a wonderful Father's Day gift it was for Chris, too. We got our baby boy back home.
It's a little strange, now that Kyle can't throw up. We're used to jumping to action whenever he gives the little warning cough, ready with a towel or two to sop up the mess. Now, he can sleep through the night without us bothering him by changing his clothes and blankets. I guess we'll be going through a lot less laundry now that he can't throw up. He still hasn't quite figured out what's going on, it seems. He still gags like he's trying really hard to throw up and then looks downright annoyed that he can't.
When they brought him up to his room (3NW), he was still a little groggy from the anesthesia and definitely a little grumpy but a little Tylenol did the trick to make him more comfortable. One of his NICU "girlfriends" (a nurse named Kelly) came to see him while we were there and mentioned that she had recently found out that her own mother had had fundoplication as a baby and has not had any serious problems caused by it. It was good to hear of someone with long-term experience of the procedure since most of what I found was about children under 5 years old.
Thursday night, after work, Chris went to seek Kyle and he said that Kyle was a little more cheerful, smiling now and then with only a bit of residual grumpiness. Friday afternoon, I went to see him and he was back to his smiley self. He had a couple of fussy moments when he would move certain ways but overall, he was smiling up a storm! Saturday afternoon, I went to see him again (bringing along a new friend I had met earlier that day) and the nurses were saying how he was almost up to where he needed to be for discharge. I didn't get my hopes up though because they normally don't discharge him on weekend days.
Yesterday morning (6/17/07), though, we got a call from All Children's saying that we could pick him up! What a wonderful Father's Day gift it was for Chris, too. We got our baby boy back home.
It's a little strange, now that Kyle can't throw up. We're used to jumping to action whenever he gives the little warning cough, ready with a towel or two to sop up the mess. Now, he can sleep through the night without us bothering him by changing his clothes and blankets. I guess we'll be going through a lot less laundry now that he can't throw up. He still hasn't quite figured out what's going on, it seems. He still gags like he's trying really hard to throw up and then looks downright annoyed that he can't.
Sunday, June 10, 2007
Home... for a limited time
Friday afternoon, I called the hospital as I was leaving work at 3:30pm to see if Kyle could be picked up yet. They told me they were still waiting on some final paperwork and weren't sure if it would be done before 6pm, so I headed home. Sure enough, five minutes after I walked in the door, I got a call saying that Kyle was ready for pick-up so I had to turn right back around.
It was a close call at one point. I thought they weren't going to let me have him after all because one of his prescriptions had expired since he was admitted and the All Children's pharmacy was closed. I had to call around to the pharmacies and make sure they could fill his prescription (which is a special compound) before I could bring him home.
We have him home now and he's babbling and laughing while I'm typing this. We still have to bring him back Wednesday for the fundoplication, but we have him for now. Chris is going to take off Wednesday for the surgery and bring him. I will have to meet them afterward, after class.
It was a close call at one point. I thought they weren't going to let me have him after all because one of his prescriptions had expired since he was admitted and the All Children's pharmacy was closed. I had to call around to the pharmacies and make sure they could fill his prescription (which is a special compound) before I could bring him home.
We have him home now and he's babbling and laughing while I'm typing this. We still have to bring him back Wednesday for the fundoplication, but we have him for now. Chris is going to take off Wednesday for the surgery and bring him. I will have to meet them afterward, after class.
Almost home...
Wednesday afternoon, the nurses told us that it looked like Kyle was scheduled for discharge the next day (Thursday), so I took off from work Thursday so that I could go straight from class to get Kyle. When I got to the hospital, though, they told me that they did not have the discharge order yet. They were waiting on authorization from pulmonology and cardiology for him to go home. They also told me that there had been some discussion over whether or not he would go home, since he's scheduled for the fundoplication surgery next Wednesday. After I was there about an hour, they got the word from pulmonology that Kyle was free to go but they were still waiting on cardiology. After another hour, they told me that they weren't sure that cardiology would be by that day. It might be Friday. I finally left at around 4:00pm since they told me that it was doubtful he'd be discharged that day and I didn't want to fight rush-hour traffic.
I went swing dancing Thursday night as a celebration of my birthday. All major catastrophes were avoided on my birthday this year, as opposed to last year's adventures with our car being stolen and me going into premature labor.
I went swing dancing Thursday night as a celebration of my birthday. All major catastrophes were avoided on my birthday this year, as opposed to last year's adventures with our car being stolen and me going into premature labor.
Wednesday, May 30, 2007
Fundoplication - not as "fun" as it sounds...
Kyle's still in All Children's Hospital. They have tried several times to wean him off the oxygen and he'll do okay for a little while but then his saturation levels drop again. Last week, they did a scope (through the G-tube) to see what was going on with his reflux since it seems like he can't keep anything down. They saw a couple of instances of reflux while they were in there and are concerned that with his reflux being so severe, he may continue to aspirate into the lungs and get pneumonia again. With his existing lung problems (bronchopulmonary dysplasia) from being on the ventilator so long, he doesn't need the added damage from pneumonia.
The doctors are now discussing possibly doing a procedure called Fundoplication. It is a surgery to essentially wrap the upper curve of the stomach around the esophagus and sew it in place. This strengthens the valve between the esophagus and the stomach which prevents the acid from backing up into the esophagus as easily. The problem with this procedure (and why it's not done lightly - it's a last resort) is that the procedure most of the time makes the child completely inable to burp or vomit - even when they are older. However severe this risk may be, it is not as severe as the risk for damage to his lungs without it.
For those who are curious about the procedure and not too squeamish, here is a link to a site with pictures of the procedure.
We haven't been able to get a straight answer on when (or even a definite if) they are going to do the surgery. It may be this week - it may be several weeks.
The doctors are now discussing possibly doing a procedure called Fundoplication. It is a surgery to essentially wrap the upper curve of the stomach around the esophagus and sew it in place. This strengthens the valve between the esophagus and the stomach which prevents the acid from backing up into the esophagus as easily. The problem with this procedure (and why it's not done lightly - it's a last resort) is that the procedure most of the time makes the child completely inable to burp or vomit - even when they are older. However severe this risk may be, it is not as severe as the risk for damage to his lungs without it.
For those who are curious about the procedure and not too squeamish, here is a link to a site with pictures of the procedure.
We haven't been able to get a straight answer on when (or even a definite if) they are going to do the surgery. It may be this week - it may be several weeks.
Thursday, May 17, 2007
Back at All Children's
Well, he's not in the ICU this time, but Kyle's back at All Children's Hospital. Monday night, Kyle was not his usual cheerful self and couldn't sleep all night (usually he sleeps like a brick through the whole night). He kept fussing and crying no matter how we held him or positioned him. He sounded a little congested late in the night so we tried out the fancy oxygen system they keep forgetting to pick up. (When he was discharged after his stay in February, they thought he was going to go home on oxygen and trained us and gave us the equipment for it, but then they changed their mind and said he didn't need the oxygen at home, after all.) We put it on for a little while (maybe a couple hours) on 0.2 Liters but it didn't seem to improve his mood or breathing, so we turned it off. We were a little apprehensive using it in the first place since technically he doesn't have a prescription for it anymore but it is just oxygen so it wasn't like we were giving him drugs.
Anyway, around the time my alarm was going off for me to get ready for school, I noticed that the back of Kyle's neck felt really warm so I took his temperature. It was 38.8C (102.9F). Just after we took his temperature, monitor went off for high heart rate (tachycardia) which is very abnormal. (Later, found out that the monitor is set to 270+ bpm for high heart rate!) Chris got ready to take Kyle to the emergency room and I called my mom to have her come a little bit earlier to watch Hannah. I know that there's at least one person who's going to read this and think that I should have gone to the emergency room with them but quite frankly, this is not new territory for us and it is important that I not miss school. I knew that it would take about an hour to get to All Children's, another hour to be seen (even with his heart problems), a couple of hours of vitals, labs and scans before they sent an actual doctor in and so on. So I went to school.
When Chris got to the hospital with Kyle and they checked his vitals, his temperature had spiked to 103F and his heart rate was in the 250's. His breaths were between 80-100 breaths a minute. They did a chest x-ray because Kyle was sounding a little crackly in the lungs and found "signs of a slight pneumonia". They decided to administer an antibiotic and admit him.
I left school as soon as class was over and went straight to the hospital. Big surprise... Chris and Kyle were still in the ER exam room waiting to be brought upstairs for admitting. Shortly after I arrived (around 1pm), they brought Kyle up to the third floor, right around the corner from his old room in NICU3. He fell asleep pretty quickly after that. The antibiotics and Tylenol seemed to be doing the trick. When I left around 9:00pm that night (Tuesday), he was sleeping like normal, his heart rate ws back to normal, he had no fever, and his breathes were down to normal. The nurse let me know that Kyle would need to be in for at least 48 hours for them to get his cultures back. It was actually comforting to know some kind of timeline. It drives me nuts wondering "Will they call me and have me pick him up today? tomorrow?".
Yesterday, I wasn't feeling so hot myself (headache, sore throat and slight fever) so I went home after school. Chris went to see Kyle at the hospital and said that he had a fever again and still sounded a little crackly in the lungs so they were going to do another x-ray.
While Chris was there, one of the NICU nurses happened to pass by and see Kyle's name on the door so she stopped in to say hi. After her a couple other nurses that knew Kyle from NICU3 came to see him. He's just Mr. Popularity! They all love him. I think that's why he keeps ending up back at the hospital. He wants to see all his nurse and tech girlfriends!
Anyway, around the time my alarm was going off for me to get ready for school, I noticed that the back of Kyle's neck felt really warm so I took his temperature. It was 38.8C (102.9F). Just after we took his temperature, monitor went off for high heart rate (tachycardia) which is very abnormal. (Later, found out that the monitor is set to 270+ bpm for high heart rate!) Chris got ready to take Kyle to the emergency room and I called my mom to have her come a little bit earlier to watch Hannah. I know that there's at least one person who's going to read this and think that I should have gone to the emergency room with them but quite frankly, this is not new territory for us and it is important that I not miss school. I knew that it would take about an hour to get to All Children's, another hour to be seen (even with his heart problems), a couple of hours of vitals, labs and scans before they sent an actual doctor in and so on. So I went to school.
When Chris got to the hospital with Kyle and they checked his vitals, his temperature had spiked to 103F and his heart rate was in the 250's. His breaths were between 80-100 breaths a minute. They did a chest x-ray because Kyle was sounding a little crackly in the lungs and found "signs of a slight pneumonia". They decided to administer an antibiotic and admit him.
I left school as soon as class was over and went straight to the hospital. Big surprise... Chris and Kyle were still in the ER exam room waiting to be brought upstairs for admitting. Shortly after I arrived (around 1pm), they brought Kyle up to the third floor, right around the corner from his old room in NICU3. He fell asleep pretty quickly after that. The antibiotics and Tylenol seemed to be doing the trick. When I left around 9:00pm that night (Tuesday), he was sleeping like normal, his heart rate ws back to normal, he had no fever, and his breathes were down to normal. The nurse let me know that Kyle would need to be in for at least 48 hours for them to get his cultures back. It was actually comforting to know some kind of timeline. It drives me nuts wondering "Will they call me and have me pick him up today? tomorrow?".
Yesterday, I wasn't feeling so hot myself (headache, sore throat and slight fever) so I went home after school. Chris went to see Kyle at the hospital and said that he had a fever again and still sounded a little crackly in the lungs so they were going to do another x-ray.
While Chris was there, one of the NICU nurses happened to pass by and see Kyle's name on the door so she stopped in to say hi. After her a couple other nurses that knew Kyle from NICU3 came to see him. He's just Mr. Popularity! They all love him. I think that's why he keeps ending up back at the hospital. He wants to see all his nurse and tech girlfriends!
Friday, May 11, 2007
Baby Fat
Last week, I noticed that Kyle's left leg looked swollen out to the side at the calf. When it still looked swollen this Monday, we decided we better check into it - especially since the left leg is the same one that had the clot when he was a week old. I made an appointment at the pediatrician's for Tuesday afternoon. My mom took him to the appointment and was told that they could not determine what it was there in the office so they said he needed to go to the All Children's Emergency Room. Chris and I both left work immediately when we got word from Mom.
After nearly 5 hours at the emergency room, an x-ray and an ultrasound, the doctors came in with the diagnosis: Lipoma. Essentially, he has a deposit of fat in that one area on his left leg. They said as long as it doesn't get any larger, change color or become painful to the touch, we don't need to worry. So all that worry and stress was for a hunk of fat!
After nearly 5 hours at the emergency room, an x-ray and an ultrasound, the doctors came in with the diagnosis: Lipoma. Essentially, he has a deposit of fat in that one area on his left leg. They said as long as it doesn't get any larger, change color or become painful to the touch, we don't need to worry. So all that worry and stress was for a hunk of fat!
Tuesday, April 24, 2007
Update
Somehow I'm hanging in there at school but it's been a challenge. I thought for sure that I was going to fail the anatomy & physiology classes but I managed to get an A. Chris says he won't listen when I freak out anymore since I've freaked on almost every final, but have gotten all A's.
Now I'm done with the general education requirement and have moved on to the core classes. Right now I'm taking Essentials of Sonography and Introduction to Pharmacology with our new teacher Mrs. Rudolph. We're still in the first week so we haven't gotten too far along... mostly terminology so far. But today the teacher treated us to a "field trip" to the lab (next door to our classroom) and did an echo on one of my classmates to show what it will be like. It really got us pumped to see the echo done and know that we'll be starting scanning in a couple short weeks, ourselves. When Mrs. Rudolph put the transducer onto my classmate's chest and the image of his heart appeared on the monitor, I was at once excited that I could recognize the mitral valve! This may not seem like a big deal to some of you but considering I didn't know what the mitral valve was until earlier this month.... I'm tickled pink!
In the meantime, Kyle has still got about a million doctor appointments. My mom is taking him to most of the appointments and that's helping quite a bit. It's still exhausting juggling the scheduling of appointments, home health equipment, feeding schedule, insurance, normal monthly bills, household chores, and somewhere in the middle, a life! It doesn't take much to push me over the edge lately. I go three days and need to get out! I've been swing dancing with Jenn a couple of times and even gone out to Ybor a couple of times. But a couple of days of early mornings to get to school, followed by work at school, followed by long drives home, followed by getting feedings, cleaning out the feeding pump, studying, and nights interrupted by loud alarms from the apnea monitor, feeding pump or tempermental alarm clocks and I'm screaming for freedom! Unfortunately freedom in the form of going out with friends and drinking, dancing, eating, etc. usually costs money... which increases the stress on the day to day stuff.
Thursday, March 29, 2007
Bank Problem Fixed
Our bank just reimbursed us today for all the fraudulent charges and fees associated with them. It's still a little rough because we got behind on a few bills because of it. But at least we have money again. Good timing, too, because both cars were almost on empty and we had used the last of the cash to put a few drops in the tanks ($5 doesn't go far at the gas station these days). Oh, and our cell phones are back on.
Wednesday, March 28, 2007
Baby's Home... Again.
I've been neglecting my blog. Not to make excuses, but I've been a little busy.
Monday morning, I went to the hospital instead of to school because they had said all weekend that Kyle was coming home that day. My mom and Hannah went with me. We met with the rep from Pediatric Health Choice in the parking lot of the hospital so that he could show us how to use the oxygen tanks and other oxygen equipment for at home. When he finished, we packed the oxygen tanks and equipment into the trunk and made our way into the hospital but as soon as we got in, the nurse had bad news. It didn't look like Kyle was coming home after all. The stupid thing is the reason. Even though they had planned discharge to include oxygen whenever he's asleep, they had not been giving him oxygen in the hospital at all. He was doing fine without it. But Sunday night (the night before I was supposed to bring Kyle home), his saturation levels were a little low so they had to use oxygen - while he was asleep. Because of him needing oxygen while he was asleep, they decided he needed more testing. They decided to do one more chest x-ray and a "lung perforation test".
So, I missed a day of class for an oxygen instruction (which I don't need) and paperwork. One day of class may not seem like much but this program is accellerated which means that one day is 10% of class - and if I miss 20% of class without make-up hours, I automatically fail. Meanwhile, Chris is out of PTO at work so even though Family Medical Leave Act (FMLA) protects his job if he takes time off for Kyle, they don't have to pay him for the time he's out.
Add to all that... Chris worked at O'Keefe's restuarant in Clearwater over the previous weekend to make a few extra bucks and at some point dropped his bank card. As soon as he realized it, he called it in as lost and emptied the bank account so that we'd have money to use until the cards were replaced. However, someone apparently found the card and used it. They made several charges which were each complimented by a nifty little overdraft fee. We're in the midst of fixing this with the bank but in the meantime, his paychecks are going into the bank and getting eaten up with the fees.
Anyway, so when I left the hospital, I explained to the nurse that whenever Kyle did get discharged, they should call us and let us know it was definite and we would pick him up after work/school. They went ahead and kept him until Wednesday to make sure he was off the oxygen for a full 48 hours. Chris and I went Wednesday after school/work to pick him up. They gave us the usual list of follow-up appointments with almost a notepad's worth of scripts for medications, follow-ups, labs, etc. The whole way to the car, I kept feeling like someone was going to chase after us and make us bring him back in. The whole way home, I felt like I was kidnapping him! It didn't help that he was looking at us like we were crazy with an accusing glare - like he was saying "Where do you think you're taking me?" But finally, we were home with our baby and he's all ours again.
I started work with the "work study" program at my school, which basically means I get paid for running around doing clerical stuff for the teachers. So far, it's going well. The copier and I are working out our differences and I'm starting to get the hang of the filing system and such.
Classes have been hard but somehow I'm managing to keep an A average. I've got to admit, at times I feel overwhelmed - like I'm going to drown in responsibility but things should be easier after a while. Once I finish school (should I survive), I'll have a career helping others and getting well paid (what a lovely combination). And with time, Kyle won't need so much extra equipment or appointments (though he will always have more check-ups than most babies his age).
My sister (best friend ever!) is visiting from Indiana with her family this week. I wish I had off from school and work to spend more time with her, but as I mentioned before, one day is 10% of a class... I just have to keep reminding myself what I'm doing it for. It helps that one of the teachers I work for got a side job offer yesterday. For working 3 hours working on echocardiographs, she can get paid $400!!! Several of my classmates also have told me of their aunts, sisters, cousins, etc who work as CVTs (Cardiovascular Technicians) and get really good pay. I also found out that I may be able to do my externship at Kyle's cardiologists' office. They happen to be the only pediatric-specific site on the extern list.
P.S. Thanks to the fun with the bank account, our cell phones have been temporarily turned off. If you want our land line phone number, e-mail me.
Monday morning, I went to the hospital instead of to school because they had said all weekend that Kyle was coming home that day. My mom and Hannah went with me. We met with the rep from Pediatric Health Choice in the parking lot of the hospital so that he could show us how to use the oxygen tanks and other oxygen equipment for at home. When he finished, we packed the oxygen tanks and equipment into the trunk and made our way into the hospital but as soon as we got in, the nurse had bad news. It didn't look like Kyle was coming home after all. The stupid thing is the reason. Even though they had planned discharge to include oxygen whenever he's asleep, they had not been giving him oxygen in the hospital at all. He was doing fine without it. But Sunday night (the night before I was supposed to bring Kyle home), his saturation levels were a little low so they had to use oxygen - while he was asleep. Because of him needing oxygen while he was asleep, they decided he needed more testing. They decided to do one more chest x-ray and a "lung perforation test".
So, I missed a day of class for an oxygen instruction (which I don't need) and paperwork. One day of class may not seem like much but this program is accellerated which means that one day is 10% of class - and if I miss 20% of class without make-up hours, I automatically fail. Meanwhile, Chris is out of PTO at work so even though Family Medical Leave Act (FMLA) protects his job if he takes time off for Kyle, they don't have to pay him for the time he's out.
Add to all that... Chris worked at O'Keefe's restuarant in Clearwater over the previous weekend to make a few extra bucks and at some point dropped his bank card. As soon as he realized it, he called it in as lost and emptied the bank account so that we'd have money to use until the cards were replaced. However, someone apparently found the card and used it. They made several charges which were each complimented by a nifty little overdraft fee. We're in the midst of fixing this with the bank but in the meantime, his paychecks are going into the bank and getting eaten up with the fees.
Anyway, so when I left the hospital, I explained to the nurse that whenever Kyle did get discharged, they should call us and let us know it was definite and we would pick him up after work/school. They went ahead and kept him until Wednesday to make sure he was off the oxygen for a full 48 hours. Chris and I went Wednesday after school/work to pick him up. They gave us the usual list of follow-up appointments with almost a notepad's worth of scripts for medications, follow-ups, labs, etc. The whole way to the car, I kept feeling like someone was going to chase after us and make us bring him back in. The whole way home, I felt like I was kidnapping him! It didn't help that he was looking at us like we were crazy with an accusing glare - like he was saying "Where do you think you're taking me?" But finally, we were home with our baby and he's all ours again.
I started work with the "work study" program at my school, which basically means I get paid for running around doing clerical stuff for the teachers. So far, it's going well. The copier and I are working out our differences and I'm starting to get the hang of the filing system and such.
Classes have been hard but somehow I'm managing to keep an A average. I've got to admit, at times I feel overwhelmed - like I'm going to drown in responsibility but things should be easier after a while. Once I finish school (should I survive), I'll have a career helping others and getting well paid (what a lovely combination). And with time, Kyle won't need so much extra equipment or appointments (though he will always have more check-ups than most babies his age).
My sister (best friend ever!) is visiting from Indiana with her family this week. I wish I had off from school and work to spend more time with her, but as I mentioned before, one day is 10% of a class... I just have to keep reminding myself what I'm doing it for. It helps that one of the teachers I work for got a side job offer yesterday. For working 3 hours working on echocardiographs, she can get paid $400!!! Several of my classmates also have told me of their aunts, sisters, cousins, etc who work as CVTs (Cardiovascular Technicians) and get really good pay. I also found out that I may be able to do my externship at Kyle's cardiologists' office. They happen to be the only pediatric-specific site on the extern list.
P.S. Thanks to the fun with the bank account, our cell phones have been temporarily turned off. If you want our land line phone number, e-mail me.
Sunday, March 18, 2007
Coming Home Again
Friday morning, Kyle had minor surgery to replace his G-tube with a simpler type called a "Mic-Key" or a "button". Friday afternoon, we found out that Kyle is most likely being discharged tomorrow (Monday). They say that he'll need oxygen for whenever he's asleep because his saturation levels drop when he's sleeping so tomorrow morning, before Kyle's discharge, my mom and I are going to be taught how to operate the oxygen equipment. Meanwhile, I'm doing a rush job cleaning up so we're ready for him to come home. We had expected that he would be in for another week at least.
A Happy Birthday
Hannah's birthday party went well. Her little buddies Jayden and James came to play and wish her a happy birthday. They flew kites, blew bubbles and had fun on the playground.
Tuesday, March 6, 2007
You're all invited!...
Hannah's birthday is Saturday so we're having a party for her.
The plan is to go to a nearby park, blow some monster bubbles, play on the playground, eat some sandwiches and cake and sing a certain song... We might even fly kites if there's some good wind going.
If it's rainy, we might be forced to brave the Chuck-E-Cheese, but hopefully it won't come to that.
Fair warning: Hannah is quite insistent on party hats - she loves them!
The party will be from 1-4pm this Saturday (March 10th).
Please RSVP (coriander_smiyles@yahoo.com) so I know how many sandwiches, party hats, bubble blowers, etc. to prepare. Kids of all ages are welcome.
The plan is to go to a nearby park, blow some monster bubbles, play on the playground, eat some sandwiches and cake and sing a certain song... We might even fly kites if there's some good wind going.
If it's rainy, we might be forced to brave the Chuck-E-Cheese, but hopefully it won't come to that.
Fair warning: Hannah is quite insistent on party hats - she loves them!
The party will be from 1-4pm this Saturday (March 10th).
Please RSVP (coriander_smiyles@yahoo.com) so I know how many sandwiches, party hats, bubble blowers, etc. to prepare. Kids of all ages are welcome.
Baby doing good...
Kyle has been extubated and is back to his smiley self. We can't hold him yet because he still has an arterial line for his Milrinone medication for his heart but they should be taking that out in a couple of days. They have been having to sedate him off and on because he gets so excited. He's such a happy baby boy and he loves people.
Friday, March 2, 2007
The little champ came through again...
Kyle went in for his open heart surgery this morning bright and early (or at least early) at around 7:00AM. The surgeon said that all went well and he is now off bypass and in recovery. Surgery went as expected and we should be able to see him in just a little bit, as soon as they have him extubated. Thank you all for your prayers, love and support. I know Kyle knows how many people are cheering for him.
Friday, February 23, 2007
A Good Day
Yesterday, Kyle's MRA was in the afternoon so I went ahead to school in the morning. I got the test back from the day before and I got a B on the test even though I was afraid I hadn't done well enough to even pass the test (biology is not turning out to be my best subject).
After school, I went straight to the hospital and, after sitting in the family waiting area for over two hours, got to go up and see Kyle. He was intubated for the MRA but by the time they brought him to his room, he was extubated and smiling. The doctors and nurses all said that the MRA went well and we should be good for the open heart surgery next week. I was able to get them to move the surgery to Friday instead of Tuesday. This way, I don't have to miss school or miss the surgery. I know the surgery is more important than my class but since this is an accellerated program, missing one class (and in this case, one test as well) could set me back quite a bit so I'm relieved that they were able to schedule it for Friday, instead.
After I left the hospital, I went by the funeral home to finally order the "thumbie" necklace I had hoped to get with Eric's footprint on it. Then I headed home to get ready for swing dancing.
A friend of mine picked me up and we car-pooled to Centro Asturiano for a free night of swing dancing. The place was packed. I had a blast.
After school, I went straight to the hospital and, after sitting in the family waiting area for over two hours, got to go up and see Kyle. He was intubated for the MRA but by the time they brought him to his room, he was extubated and smiling. The doctors and nurses all said that the MRA went well and we should be good for the open heart surgery next week. I was able to get them to move the surgery to Friday instead of Tuesday. This way, I don't have to miss school or miss the surgery. I know the surgery is more important than my class but since this is an accellerated program, missing one class (and in this case, one test as well) could set me back quite a bit so I'm relieved that they were able to schedule it for Friday, instead.
After I left the hospital, I went by the funeral home to finally order the "thumbie" necklace I had hoped to get with Eric's footprint on it. Then I headed home to get ready for swing dancing.
A friend of mine picked me up and we car-pooled to Centro Asturiano for a free night of swing dancing. The place was packed. I had a blast.
Tuesday, February 20, 2007
Aaaarrrrgggghh!
After spending the majority of the day at the PICU yesterday with Kyle, he was brought down to the MRA area (which is currently in a mobile unit). Even though the anesthesiologist said there was the possibility he would need to be intubated to be sedated, apparently they didn't prepare for that possibility so when he was uncooperative with the IV sedation, they had to bring him back to his room because they didn't have room to intubate him in the mobile unit. They still don't even have him re-scheduled for the MRA. It's so frustrating.
Friday, February 16, 2007
New Information...
Just got the word today that Kyle is going to have an MRA (MRI of the heart) on Monday and then the valve replacement surgery (open-heart surgery) will most likely be on the 27th. Kyle's been feeling better and back to his smiley self but he's still in the PICU and will stay in the PICU until he's recovered from the surgery. I don't know how much will be different after the surgery - whether he will be able to feed from a bottle or still need the apnea monitor. We're just having to take it one day at a time.
School
Well, I've been in school for three weeks now and I've already completed two classes (Algebra and Communications). Despite my hatred of math, I managed to pass the algebra class with a respectable grade and I'll find out on Tuesday what kind of grade I got in Communications. I did okay on the previous test and class assignments and Tuesday I'll get my grade for my speech project that I presented today and the take-home final exam. I did my speech on "Life in the NICU" so hopefully I don't lose points for making the class and teacher cry... or crying a little bit during the speech myself (a little embarrassing).
They told us at orientation that this program (Non-Invasive Cardiovascular Technology) is a high stress program because it is excellerated but I didn't expect quite so much of a whirlwind education. Algebra consisted of 9 classes and 7 tests; Communications consisted of 3 classes, 2 tests and a speech presentation; and Biology has only been 3 days so far and there's already been a test. I am amazed that I'm keeping my head above water on this - especially with all that's going on with Kyle.
They told us at orientation that this program (Non-Invasive Cardiovascular Technology) is a high stress program because it is excellerated but I didn't expect quite so much of a whirlwind education. Algebra consisted of 9 classes and 7 tests; Communications consisted of 3 classes, 2 tests and a speech presentation; and Biology has only been 3 days so far and there's already been a test. I am amazed that I'm keeping my head above water on this - especially with all that's going on with Kyle.
My Speech
Life in the NICU
by Corinne Foreman
In a single year, over 4 million babies are born in the United States and the majority of parents are happily unaware of all the things that could have gone wrong. But roughly 12% of those births are followed by a stay in the Neonatal Intensive Care Unit (more commonly known as the NICU).
I speak from experience as a mother of three – two of whom have been residents of the NICU. Life in the NICU is a rollercoaster of events and emotions. Today I’m going to tell you about the joy, surprise, helplessness, fear, confusion, grief and anger involved in life in the NICU and a little about the joy and fear involved in going home after a long stay in the NICU.
No matter what other emotions accompany it, joy is usually the first and strongest emotion at the birth of a baby. Their arrival is highly anticipated. Even if they are born way ahead of schedule, we wait anxiously for them, counting down the days. When a child is in the NICU, sometimes joy is outweighed by worries and fears for a time, but there are moments that bring that joy back - moments that most parents take for granted. The first time you get to hold the baby, the first time you get to kiss them, the first time they wear clothes, and eventually, when you get to bring them home. These are experiences most parents expect to happen within twenty-four hours of life but for a NICU baby, there may be days, weeks or sometimes several months before their first kiss even.
Joy is quickly followed by (and sometimes outweighed by) surprise, especially since prematurity is the leading cause for NICU hospitalization. Many babies in the NICU are still named “Baby Boy” or “Baby Girl” since their parents haven’t had the time to decide on a permanent name. In fact, many times parents have not even had time for a baby shower, preparing the home, or even buying essential items like cribs or car seats. Even the most prepared parent is generally not prepared for a hospital stay of more than 24 hours – even if they had a complicated pregnancy. Parents have tours of local hospitals and birthing centers but never tour the local NICU. A parent doesn’t generally want to think about that possibility and they don’t prepare for it so it always comes as a surprise.
The most frustrating feeling in the NICU is helplessness. The average parent knows nothing about the medical equipment used in the NICU. They walk into the NICU and only know that their child has more wires, tubes and machinery attached to them than most dishwashers. There are generally at least three wires on their chest and one on the foot that connect to a monitor for their vitals. Depending on the child, there may also be an umbilical line or PICC line and there may be IVs in the baby’s feet, arms or scalp. There may be breathing tubes, feeding tubes, nasal cannulas, or even blindfolds for bililight treatment. Normally, when a child is hurt or scared, parents wants to hold them. It just seems to take away the pain and fear. But severely premature or low birth weight infants can react badly to stimulation, so the parents are discouraged from holding their baby. A lot of the times, all that the parents can do is just look at their baby with all the tubes and wires and try to sound comforting, speaking softly through the incubator plastic. The only experience I know of that compares with this helplessness is watching a loved one dying. There’s nothing you can do to help or change things. You can only watch and wait.
With this helplessness, naturally comes fear and confusion. We fear the unknown, and since most parents know so little about what is happening to their little baby, there is much to fear. The doctors and nurses rush around using terminology that might as well be a foreign language – apnea, bradycardia, bronchopulmonary dysplasia. All most parents know of these terms is that they mean something is wrong with their little baby. After a long stay in the NICU, parents start to become familiar with the terminology and technology. When all you can do is watch your baby, you have plenty of opportunity to look at the dozens of things going on for their care (the numerous medications and IV fluids, the specific vitals that are being monitored, the levels of oxygen on the ventilator or cannula, and many other things). Asking questions and researching can help to decrease the fear sometimes. But sometimes, the more you know about a condition just shows you how much there really is to fear. For example, asking what treatment options there are for bronchopulmonary dysplasia and hearing that there are steroid treatments that can be done that are 99% effective, decreases a fear. But hearing that the steroid treatments may cause severe neurological problems but without steroid treatment, the baby can die - not reassuring.
Sometimes, a parents’ worst fear is realized with the loss of their baby. Whether or not a child dies, death and life permeate the NICU on a constant basis. In fact, death is part of life in the NICU. Every parent in the NICU is fearing that their baby will die and many brace themselves for that possibility. Some witness as others experience a loss while others experience the loss first hand. I experienced loss first hand and it felt like the NICU froze and stopped functioning while I grieved, but when I later witnessed another family’s loss as they put up curtains for privacy and called in the chaplain, I realized NICU life continues. It just gets quieter for a moment out of respect for the grieving family. Within moments of the infant being taken away, the incubator is moved out and a new baby moved into their place. The NICU world continues moving. Many parents feel angry that their baby has to be in the NICU at all. They may feel cheated out of the joy that should come with a new baby and they feel jealous of other parents who get to take their baby right home and cuddle them. When a parent loses their baby, it is especially hard not to feel angry at the world. Even though the parents may know that there is no one to blame, it may seem like it would be easier if there was. They commonly try placing the blame with either the doctors or themselves.
For most, the stay in the NICU is ended by getting to go home. Whether it is after a few days or after several months, it is a happy occasion bringing home baby. There is a sense of relief that both parents and baby have survived the NICU. Life essentially picks up where it left off when baby was born. But things are a little different than expected. Though many leave the NICU with a clean bill of health, others leave with baggage. They may have special equipment for monitoring or treatment, numerous medications and scheduled appointments with specialists. For example, my own baby came home with a gastronomy tube in his belly for feeding, a feeding pump to use with the tube, an apnea monitor, six different medications, microlipids and thickener to add to his formula, and at least five specialists to follow up with outpatient. All of these factors lend to fear, naturally but even if the baby is discharged without the extra equipment, there is always the fear that they’ll have to return. For a preemie or low birth weight baby, a simple cold can mean a trip to the emergency room and more time back in the ICU.
Usually, the only people who know what life in the NICU is like are those who’ve been there – who’ve experienced this emotional rollercoaster from beginning to end. I hope that this speech is the closest any of you ever have to get to life in the NICU.
by Corinne Foreman
In a single year, over 4 million babies are born in the United States and the majority of parents are happily unaware of all the things that could have gone wrong. But roughly 12% of those births are followed by a stay in the Neonatal Intensive Care Unit (more commonly known as the NICU).
I speak from experience as a mother of three – two of whom have been residents of the NICU. Life in the NICU is a rollercoaster of events and emotions. Today I’m going to tell you about the joy, surprise, helplessness, fear, confusion, grief and anger involved in life in the NICU and a little about the joy and fear involved in going home after a long stay in the NICU.
No matter what other emotions accompany it, joy is usually the first and strongest emotion at the birth of a baby. Their arrival is highly anticipated. Even if they are born way ahead of schedule, we wait anxiously for them, counting down the days. When a child is in the NICU, sometimes joy is outweighed by worries and fears for a time, but there are moments that bring that joy back - moments that most parents take for granted. The first time you get to hold the baby, the first time you get to kiss them, the first time they wear clothes, and eventually, when you get to bring them home. These are experiences most parents expect to happen within twenty-four hours of life but for a NICU baby, there may be days, weeks or sometimes several months before their first kiss even.
Joy is quickly followed by (and sometimes outweighed by) surprise, especially since prematurity is the leading cause for NICU hospitalization. Many babies in the NICU are still named “Baby Boy” or “Baby Girl” since their parents haven’t had the time to decide on a permanent name. In fact, many times parents have not even had time for a baby shower, preparing the home, or even buying essential items like cribs or car seats. Even the most prepared parent is generally not prepared for a hospital stay of more than 24 hours – even if they had a complicated pregnancy. Parents have tours of local hospitals and birthing centers but never tour the local NICU. A parent doesn’t generally want to think about that possibility and they don’t prepare for it so it always comes as a surprise.
The most frustrating feeling in the NICU is helplessness. The average parent knows nothing about the medical equipment used in the NICU. They walk into the NICU and only know that their child has more wires, tubes and machinery attached to them than most dishwashers. There are generally at least three wires on their chest and one on the foot that connect to a monitor for their vitals. Depending on the child, there may also be an umbilical line or PICC line and there may be IVs in the baby’s feet, arms or scalp. There may be breathing tubes, feeding tubes, nasal cannulas, or even blindfolds for bililight treatment. Normally, when a child is hurt or scared, parents wants to hold them. It just seems to take away the pain and fear. But severely premature or low birth weight infants can react badly to stimulation, so the parents are discouraged from holding their baby. A lot of the times, all that the parents can do is just look at their baby with all the tubes and wires and try to sound comforting, speaking softly through the incubator plastic. The only experience I know of that compares with this helplessness is watching a loved one dying. There’s nothing you can do to help or change things. You can only watch and wait.
With this helplessness, naturally comes fear and confusion. We fear the unknown, and since most parents know so little about what is happening to their little baby, there is much to fear. The doctors and nurses rush around using terminology that might as well be a foreign language – apnea, bradycardia, bronchopulmonary dysplasia. All most parents know of these terms is that they mean something is wrong with their little baby. After a long stay in the NICU, parents start to become familiar with the terminology and technology. When all you can do is watch your baby, you have plenty of opportunity to look at the dozens of things going on for their care (the numerous medications and IV fluids, the specific vitals that are being monitored, the levels of oxygen on the ventilator or cannula, and many other things). Asking questions and researching can help to decrease the fear sometimes. But sometimes, the more you know about a condition just shows you how much there really is to fear. For example, asking what treatment options there are for bronchopulmonary dysplasia and hearing that there are steroid treatments that can be done that are 99% effective, decreases a fear. But hearing that the steroid treatments may cause severe neurological problems but without steroid treatment, the baby can die - not reassuring.
Sometimes, a parents’ worst fear is realized with the loss of their baby. Whether or not a child dies, death and life permeate the NICU on a constant basis. In fact, death is part of life in the NICU. Every parent in the NICU is fearing that their baby will die and many brace themselves for that possibility. Some witness as others experience a loss while others experience the loss first hand. I experienced loss first hand and it felt like the NICU froze and stopped functioning while I grieved, but when I later witnessed another family’s loss as they put up curtains for privacy and called in the chaplain, I realized NICU life continues. It just gets quieter for a moment out of respect for the grieving family. Within moments of the infant being taken away, the incubator is moved out and a new baby moved into their place. The NICU world continues moving. Many parents feel angry that their baby has to be in the NICU at all. They may feel cheated out of the joy that should come with a new baby and they feel jealous of other parents who get to take their baby right home and cuddle them. When a parent loses their baby, it is especially hard not to feel angry at the world. Even though the parents may know that there is no one to blame, it may seem like it would be easier if there was. They commonly try placing the blame with either the doctors or themselves.
For most, the stay in the NICU is ended by getting to go home. Whether it is after a few days or after several months, it is a happy occasion bringing home baby. There is a sense of relief that both parents and baby have survived the NICU. Life essentially picks up where it left off when baby was born. But things are a little different than expected. Though many leave the NICU with a clean bill of health, others leave with baggage. They may have special equipment for monitoring or treatment, numerous medications and scheduled appointments with specialists. For example, my own baby came home with a gastronomy tube in his belly for feeding, a feeding pump to use with the tube, an apnea monitor, six different medications, microlipids and thickener to add to his formula, and at least five specialists to follow up with outpatient. All of these factors lend to fear, naturally but even if the baby is discharged without the extra equipment, there is always the fear that they’ll have to return. For a preemie or low birth weight baby, a simple cold can mean a trip to the emergency room and more time back in the ICU.
Usually, the only people who know what life in the NICU is like are those who’ve been there – who’ve experienced this emotional rollercoaster from beginning to end. I hope that this speech is the closest any of you ever have to get to life in the NICU.
Saturday, February 3, 2007
From NICU to Home to PICU
Well, Kyle was home for two and a half weeks filled with numerous doctor's check-ups. Wednesday afternoon, Kyle was sounding a little congested. Wednesday night, none of us got any sleep. Kyle was up all night with the congestion. Every time he tried to fall asleep, he'd wake back up, snuffling. We used the bulb syringe several times but it didn't seem to help as much as he needed. Thursday morning, he sounded a little better so Chris and I went to work and school but my mom called a couple of hours later and Chris left work to come home. Kyle had a low-grade fever and the doctor's office said to give him Tylenol and see if the fever went down. The fever did go down but we decided to bring him in to the pediatrician's office anyway. Good thing we did. The pediatrician said that Kyle's saturation levels were dangerously low and he needed to be rushed to All Children's in an ambulance.
I met Chris at the Emergency Room. They started Kyle on the nasal cannula for oxygen and Albuterine breathing treatments. Poor little Kyle was miserable by that point, pretty much gasping between snuffles. The doctor at All Children's said that they were going to go ahead and set Kyle up in a room in the PICU (Pediatric Intensive Care Unit) because he needed to stay on the oxygen and breathing treatments longer so Chris stayed overnight with Kyle and I went home to get a few hours of sleep before going to school. Since the program I'm in is an accelerated program, missing one day of class would be like missing a week of a regular class so I couldn't afford to miss.
Kyle had several labs done as well as an echo and chest x-ray. The doctors said that it looked like an upper respiratory virus. They were able to rule out RSV but Kyle's still pretty miserable. Last night, I went to the hospital and took over watching Kyle so Chris could go home and get some sleep. I ended up getting some pretty good sleep myself since Kyle was pretty wiped out from all the activity the night before and that morning and he slept the entire night.
This morning, the doctor and the cardiologist each came to see Kyle and the cardiologist said that based on the echo from yesterday, they are looking at probably doing the valve replacement surgery (open heart surgery) as soon as Kyle is completely recovered from this virus. This is much sooner than we thought it would be but they think it would be best to do it sooner rather than later.
It's very frustrating to have Kyle back in the hospital after we've only had him home for such a short time.
I met Chris at the Emergency Room. They started Kyle on the nasal cannula for oxygen and Albuterine breathing treatments. Poor little Kyle was miserable by that point, pretty much gasping between snuffles. The doctor at All Children's said that they were going to go ahead and set Kyle up in a room in the PICU (Pediatric Intensive Care Unit) because he needed to stay on the oxygen and breathing treatments longer so Chris stayed overnight with Kyle and I went home to get a few hours of sleep before going to school. Since the program I'm in is an accelerated program, missing one day of class would be like missing a week of a regular class so I couldn't afford to miss.
Kyle had several labs done as well as an echo and chest x-ray. The doctors said that it looked like an upper respiratory virus. They were able to rule out RSV but Kyle's still pretty miserable. Last night, I went to the hospital and took over watching Kyle so Chris could go home and get some sleep. I ended up getting some pretty good sleep myself since Kyle was pretty wiped out from all the activity the night before and that morning and he slept the entire night.
This morning, the doctor and the cardiologist each came to see Kyle and the cardiologist said that based on the echo from yesterday, they are looking at probably doing the valve replacement surgery (open heart surgery) as soon as Kyle is completely recovered from this virus. This is much sooner than we thought it would be but they think it would be best to do it sooner rather than later.
It's very frustrating to have Kyle back in the hospital after we've only had him home for such a short time.
Sunday, January 21, 2007
Adventures With Baby
It's been an interesting week with Kyle home. For one thing, he has very bad reflux so when he spits up, he gets some good distance and volume... too bad it's not an Olympic sport... So we're constantly changing his clothes, his blankets, etc.
Also, his apnea monitor is finicky. It's supposed to alarm whenever he's not breathing for something like five seconds. Obviously, it's an important alarm so it's very loud... louder than many fire alarms! Unfortunately, it only picks up about half of Kyle's breaths, it seems. It's gone off several times when we're holding Kyle or watching him and know that he's breathing fine! It just doesn't pick up his more shallow breaths. If anything, Kyle breathes too fast so it's getting very irritating that every time his respiratory rate slows down to normal, the alarm goes off and pisses him off! It's like negative reinforcement. I really wish they hadn't sent him home on the apnea monitor. Breathing too slow has never been his problem.
But he is a cutie pie and if it weren't for the monitor going off and his reflux acting up, he'd probably sleep through the night.
Hannah's starting to have fun with him, helping get his diapers and wipes and blankets for us and singing songs for Kyle. She's still a little green sometimes. She's starting to realize she's no longer the only baby. She's not too happy to discover that. It's subtle signs.... like right now, in order to update this blog, I have Kyle in my lap, grabbing my arms and staring at the ceiling fan and Hannah talking and taking pretend pictures of me on her pretend cell phone but every time I look down at Kyle, Hannah just grabs my chin and turns my face to look at her instead... you know... real subtle.
My mom has been a big help this week. When I start school, a week from tomorrow, she'll be watching Kyle and Hannah while I'm gone during the day so she's immersing herself in Kyle's care this week to make sure she's ready. All the care with the pump and the medicines and the normal baby stuff can be rather overwhelming. It seems like more of a two person job sometimes.
Also, his apnea monitor is finicky. It's supposed to alarm whenever he's not breathing for something like five seconds. Obviously, it's an important alarm so it's very loud... louder than many fire alarms! Unfortunately, it only picks up about half of Kyle's breaths, it seems. It's gone off several times when we're holding Kyle or watching him and know that he's breathing fine! It just doesn't pick up his more shallow breaths. If anything, Kyle breathes too fast so it's getting very irritating that every time his respiratory rate slows down to normal, the alarm goes off and pisses him off! It's like negative reinforcement. I really wish they hadn't sent him home on the apnea monitor. Breathing too slow has never been his problem.
But he is a cutie pie and if it weren't for the monitor going off and his reflux acting up, he'd probably sleep through the night.
Hannah's starting to have fun with him, helping get his diapers and wipes and blankets for us and singing songs for Kyle. She's still a little green sometimes. She's starting to realize she's no longer the only baby. She's not too happy to discover that. It's subtle signs.... like right now, in order to update this blog, I have Kyle in my lap, grabbing my arms and staring at the ceiling fan and Hannah talking and taking pretend pictures of me on her pretend cell phone but every time I look down at Kyle, Hannah just grabs my chin and turns my face to look at her instead... you know... real subtle.
My mom has been a big help this week. When I start school, a week from tomorrow, she'll be watching Kyle and Hannah while I'm gone during the day so she's immersing herself in Kyle's care this week to make sure she's ready. All the care with the pump and the medicines and the normal baby stuff can be rather overwhelming. It seems like more of a two person job sometimes.
Monday, January 15, 2007
He's Home!
At about 4:45pm this afternoon, we walked through the door to our apartment with our precious little nearly-six-month-old baby boy! We have a feeding pump, apnea/bradycardia monitor, six medications, about a truckload of odd end accessories, orders and orders for numerous follow-up appointments and labs..... and a chubby little bundle of joy! So far, he seems most impressed with the ceiling fan in our bedroom (where his cradle is set up) and he seems quite confused by everyone being SO tall! He's used to seeing people just a couple of feet above him from the crib but the cradle is low to the ground and we're all giants from that perspective.
I wonder how long it will take for him to realize that this is home. He probably still expects to see his nurses come bedside any time. I've got to admit, it would be nice if a nurse came with all the other equipment but I'm certain I can handle the different aspects of his care just fine. And, of course, I will have his Nana Cain helping me out some mornings and his Daddy helping at night and on weekends.
I wonder how long it will take for him to realize that this is home. He probably still expects to see his nurses come bedside any time. I've got to admit, it would be nice if a nurse came with all the other equipment but I'm certain I can handle the different aspects of his care just fine. And, of course, I will have his Nana Cain helping me out some mornings and his Daddy helping at night and on weekends.
We're letting Hannah sleep through to the end of her nap before springing her on him. A cranky Hannah is much harder to control than a well-rested Hannah. We're going to have to go over his care carefully with her, making sure that she understands fully that she is not to touch Kyle without supervision and only really gentle touches then, and she is not to touch any of the nifty gadgets that come with him. One demonstration of the loud noise from the apnea monitor should get that idea across to her, though.
Bulletin for all those who would like to visit Kyle....
I am going to be strict about visitors. All visitors MUST wash their hands thoroughly on arrival and after any trips to the bathroom regardless of whether or not they will be actually holding Kyle.
Obviously, we don't want too much excitement for Kyle so I will also have to limit how much he is passed around. Visitors will likely get to hold him but no passing him off every 15 minutes. He's very social and loves people and loves being snuggled but he also has very bad reflux and too much movement will result in clothes drenched in "recycled" formula on both Kyle and whomever is holding him - kind of like a really disgustingly wet and messy game of "hot potato". So be considerate of Kyle's tummy and of any visitor who might end up holding him at the end of the line.
I will also expect that anyone feeling sick will not visit until they are feeling better for at least a full day. Children and adults alike with runny noses, fevers or coughing (even a small amount) will be asked not to visit for at least 24 hours after these symptoms subside. These are pretty much common sense rules but I want to be clear. Please remember that Kyle had a very rocky start and is not completely out of danger.
Also, for those of you who smoke.... As always, I ask that there be no smoking in our home. This is not a change. But I would also ask that any smokers wear a smock of some sort over their clothes (I will find something to serve this purpose) since a large amount of cigarette smoke can be carried in on clothing and since his lungs are especially sensitive.
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