I absolutely HATE going to doctor's and therapy appointments. It's all we do. Lately, they have all been pissing me off (except Dr. Cohen's office, our pediatrician). I like them a lot. Everyone else, I hate!
Today, we were supposed to have a therapy appointment at 10:00. I wake up at 8:00 after going to bed at 2:00 AM to get everyone ready. Pump the boobs, feed the babies, get all 3 kids dressed, get Brenna breakfast, pack a diaper bag, start loading them in the car at 9:15 AM, check my phone, realize the therapy place called. I check the message and they tell me I have missed my appt. They say it was at 8 AM. I know this is not true. The lady told me that if I wanted them to be seen last week, they could see me at 8AM. I asked if she had anything else because that was really early for us. She said if we wanted to wait until this week, we could be seen at 10:00 AM. I guess she didn't write it down correctly. Easy mistake for her. Then of course, all the doctors like to use the word "reschedule" as if that is the easiest thing in the world. It's so easy for them. All they have to do is write me down at another time. For me, it means going through the long routine of getting everyone out the door once again!
A few weeks ago at Cade's ENT appointment, I completely lost it. Our appointment time was at 11:30 AM. We get there at 11:31 AM. The receptionist tells me that we will have to reschedule (there's that evil word again) because we were "late". I told her to look at the clock; it was 11:31. I asked her if she was serious? She, in that too sweet receptionist tone that makes me want to scream, said, "I'm sorry but the doctor was called to surgery and since you were "late", you will have to reschedule." Instead of calling us to tell us the doctor had been called to surgery, they just let us drive downtown for 45 minutes with 9 month old twins and a 3 year old. At that point, I just lost it. I told her in my not-so-sweet voice, "You mean to tell me that you can not honor an appointment because I was 1 minute late! That is absolutely crazy. Do you have any idea what it is like to have micro-preemies? No, I'm sure you don't. Do you know what it is like to go to 20 appointments or more per month? No, I'm sure you don't. You can tell me to reschedule like it is the easiest thing in the world. Well, it's not easy to get my micro-preemies and 3 yr old here. It takes us two hours to get ready and get here. This is absolutely ridiculous" By this time, I was crying and fuming. Luckily for them, Jim was at this appt. with me and he told me to go wait in the hallway. That was good for them because I was just seconds away from crawling right over that counter and wringing someone's neck!
The worst part is that I feel like I have no control when they piss me off. I would just go to another place, but I actually like the doctors; I just hate their office staff. Why are they all so incompetent?
As soon as I think that we are getting to a point of having fewer appointments, something else comes up. At the GI yesterday, he told us we need to schedule an upper GI and a gastric emptying test for Cade just to make sure everything is working correctly after the surgery. That's 2 more appointments to add to the list. Soon, I will have to add a psychiatrist appointment to the list for myself!
Our blog tells the miraculous story of our 24 week twins, Camdyn and Cade, and their big sister Brenna - the struggles, the challenges, and the many joys!
Thursday, January 27, 2011
Wednesday, January 26, 2011
My Big, Fat Thank You List
I have been meaning to start this post for a long time now, but it seems like such a daunting task that I keep putting it off which is terrible considering the topic and all. So many people have blessed us in so many ways throughout our ordeal of the twins arrival 16 weeks too early. Tragedy (or near tragedy in our case) really does bring out the best in people. Be warned that this post is going to be very, very long. Since I know I will not have the time to complete it all at once, I will add to it when I have time.
Thank you God. I don't always know the answer to "why me?" At first, I asked, "Why did this happen to me, to my family, to my babies?" Now, I ask "Why did my babies survive while others don't?" I still don't feel like I know the answers to either question but I am so thankful that you have given me these little miracles to love. I thank you for blessing us all with good health, and I continue to ask you to watch over all my babies. God already knows this but the rest of you might not. We have changed our prayers from we pray that God "makes our babies strong and healthy" or as Brenna says "stwong and helfy" to we pray that God "keeps us all strong and healthy". I am so thankful that we have been able to change that one little verb in our prayers.
Thank you to my wonderful husband, Jim. He has been there for me every step along this treacherous journey. When the doctor delivered the heart-dropping news that the babies would be delivered that day and I broke down crying muttering something like, "No, it's too early . . . no, way too early. Are you sure?", Jim stood next to me holding my hand and kissing my forehead. He didn't say, "It's all going to be okay" because how could he when we were just told that our babies were about to be delivered 4 months early? Instead he said, "We'll get through this. No matter what happens, we will get through it." And we have. He literally held me up on those first trips to the NICU when all we were able to do was peer through the glass of the isolettes at our tiny, fragile babies who were clinging to life. He kept the house running, kept going to work when I know that must have been so difficult for him with the babies in the NICU, finished building our new house, visited the babies every day, and remained being Brenna's Daddy through it all. I feel fairly certain that I would have lost all semblances of sanity that I might have left without him by my side.
Thank you to my precious princess, Brenna. She doesn't even realize all that she has been through because it all seems perfectly normal to her. When I asked her if most babies eat like Camdyn (by bottle) or like Cade (by tube), she answered that some babies eat like Camdyn and some eat like Cade. She is right in saying so, but I think that she thinks the ratio is about 50% by bottle and 50% by tube. She thinks that all babies spend their first year or so going to 3-4 doctor's appointments per week and all babies have therapy appointments. We could all learn a lesson of patience and acceptance from my 3 year old. She doesn't know it, but I will always know that it was she who kept me from going into a deep depression. Even though I had spells of feeling despair at our situation, I still had to be Mommy for her. I love her so much.
Thank you to my mom for being so supportive. My mom had spent the night with me at the hospital the night before the babies were born. She was planning on spending a couple of nights out of the week with me so I wouldn't be lonely when Jim couldn't be there. She didn't care that she would be sleeping on the uncomfortable love seat that the hospital calls a bed. After the babies were born, she came to the NICU with me to visit the babies or watched Brenna so I could go. She did anything I asked her to do and so much more that I didn't even have to ask her to do. Now she watches the kids for me two days a week so I can work. When she comes over, she does my laundry, washes the bottles, takes out the trash, feeds the babies, and even random things like organizes our closets! She has this weird liking of doing laundry which works out very well for me. I can't thank her enough for all of her support.
Thank you to my sister Bridget. Bridget is a take-charge kind of person. She could see that our hospital bills were going to be piling up, so she decided to organize a fundraiser for the babies. It was very successful, and it really has helped us out a lot. That is definitely not all she has done for me though. She came to visit the babies often in the NICU and somehow she was always there when the doctors wanted to deliver the worst news. She scooped me up in her arms when the doctor first told me about Cade's head bleed and when the (stupid and insensitive) ENT told me that Cade would possibly need a tracheostomy for life. Bridget showed up at the hospital the morning of Cade's g-tube surgery just so she could hug me when they took Cade away. I'll always remember that she is the one who brought me my own balloons which I toted very proudly down the hallway when we finally got to leave the NICU. I had seen all those proud moms carrying those damn balloons out of the hospital daily for 18 weeks (and they didn't even have to work for them besides labor, but shoot, that was the easy part)! Sometimes you would think that she might be their mom with the way she tears up over any little thing about them. What a great aunt!
Thank you to Kathy and Russell. They have been so dedicated to the babies and to us throughout this entire journey. I always loved my in-laws, but I don't think I realized how much. I won the in-law jackpot. They came to visit the babies every weekend when they were in the NICU and after. They came to help us out every single weekend for eight and a half months! In the beginning, Kathy and I would go visit the babies while Jim and Russell worked on the new house. Kathy and Russell still come at least twice a month to help us out now. When they come, they wash bottles, mix bottles, change diapers, and feed the babies. I keep mentioning "feed the babies" because unless you have fed my babies, you have no idea of what a heroic effort is required each time. Kathy and Russell are also the deliverers of all the food which Jim's family so generously bestows upon us. (Thank you Grandma Hensel, Grannie Stahmer, Aunt April, and Aunt Sandy for that.) Did I mention that we are so lucky to have such a wonderful, helpful family?
I'll update the list again, but for now, I have to muster up my superhero powers to go feed the babies once again!
Thank you God. I don't always know the answer to "why me?" At first, I asked, "Why did this happen to me, to my family, to my babies?" Now, I ask "Why did my babies survive while others don't?" I still don't feel like I know the answers to either question but I am so thankful that you have given me these little miracles to love. I thank you for blessing us all with good health, and I continue to ask you to watch over all my babies. God already knows this but the rest of you might not. We have changed our prayers from we pray that God "makes our babies strong and healthy" or as Brenna says "stwong and helfy" to we pray that God "keeps us all strong and healthy". I am so thankful that we have been able to change that one little verb in our prayers.
Thank you to my wonderful husband, Jim. He has been there for me every step along this treacherous journey. When the doctor delivered the heart-dropping news that the babies would be delivered that day and I broke down crying muttering something like, "No, it's too early . . . no, way too early. Are you sure?", Jim stood next to me holding my hand and kissing my forehead. He didn't say, "It's all going to be okay" because how could he when we were just told that our babies were about to be delivered 4 months early? Instead he said, "We'll get through this. No matter what happens, we will get through it." And we have. He literally held me up on those first trips to the NICU when all we were able to do was peer through the glass of the isolettes at our tiny, fragile babies who were clinging to life. He kept the house running, kept going to work when I know that must have been so difficult for him with the babies in the NICU, finished building our new house, visited the babies every day, and remained being Brenna's Daddy through it all. I feel fairly certain that I would have lost all semblances of sanity that I might have left without him by my side.
Thank you to my precious princess, Brenna. She doesn't even realize all that she has been through because it all seems perfectly normal to her. When I asked her if most babies eat like Camdyn (by bottle) or like Cade (by tube), she answered that some babies eat like Camdyn and some eat like Cade. She is right in saying so, but I think that she thinks the ratio is about 50% by bottle and 50% by tube. She thinks that all babies spend their first year or so going to 3-4 doctor's appointments per week and all babies have therapy appointments. We could all learn a lesson of patience and acceptance from my 3 year old. She doesn't know it, but I will always know that it was she who kept me from going into a deep depression. Even though I had spells of feeling despair at our situation, I still had to be Mommy for her. I love her so much.
Thank you to my mom for being so supportive. My mom had spent the night with me at the hospital the night before the babies were born. She was planning on spending a couple of nights out of the week with me so I wouldn't be lonely when Jim couldn't be there. She didn't care that she would be sleeping on the uncomfortable love seat that the hospital calls a bed. After the babies were born, she came to the NICU with me to visit the babies or watched Brenna so I could go. She did anything I asked her to do and so much more that I didn't even have to ask her to do. Now she watches the kids for me two days a week so I can work. When she comes over, she does my laundry, washes the bottles, takes out the trash, feeds the babies, and even random things like organizes our closets! She has this weird liking of doing laundry which works out very well for me. I can't thank her enough for all of her support.
Thank you to my sister Bridget. Bridget is a take-charge kind of person. She could see that our hospital bills were going to be piling up, so she decided to organize a fundraiser for the babies. It was very successful, and it really has helped us out a lot. That is definitely not all she has done for me though. She came to visit the babies often in the NICU and somehow she was always there when the doctors wanted to deliver the worst news. She scooped me up in her arms when the doctor first told me about Cade's head bleed and when the (stupid and insensitive) ENT told me that Cade would possibly need a tracheostomy for life. Bridget showed up at the hospital the morning of Cade's g-tube surgery just so she could hug me when they took Cade away. I'll always remember that she is the one who brought me my own balloons which I toted very proudly down the hallway when we finally got to leave the NICU. I had seen all those proud moms carrying those damn balloons out of the hospital daily for 18 weeks (and they didn't even have to work for them besides labor, but shoot, that was the easy part)! Sometimes you would think that she might be their mom with the way she tears up over any little thing about them. What a great aunt!
Thank you to Kathy and Russell. They have been so dedicated to the babies and to us throughout this entire journey. I always loved my in-laws, but I don't think I realized how much. I won the in-law jackpot. They came to visit the babies every weekend when they were in the NICU and after. They came to help us out every single weekend for eight and a half months! In the beginning, Kathy and I would go visit the babies while Jim and Russell worked on the new house. Kathy and Russell still come at least twice a month to help us out now. When they come, they wash bottles, mix bottles, change diapers, and feed the babies. I keep mentioning "feed the babies" because unless you have fed my babies, you have no idea of what a heroic effort is required each time. Kathy and Russell are also the deliverers of all the food which Jim's family so generously bestows upon us. (Thank you Grandma Hensel, Grannie Stahmer, Aunt April, and Aunt Sandy for that.) Did I mention that we are so lucky to have such a wonderful, helpful family?
I'll update the list again, but for now, I have to muster up my superhero powers to go feed the babies once again!
Saturday, January 22, 2011
A Trip to the Mall
Brenna and I spent the day together yesterday hanging out at the mall. She had been quarantined from the babies the two previous days on account of having strep throat. We sent her to stay with my mom for one day and then my grandma the next day. It's like we were told she had leprosy. We immediately sent her off to the leper colony (aka Nanny's and great-grandma's house) so she would not contaminate the babies. Fortunately for her, she really enjoys the leper colony. When she got back home, I decided to spend some time with her so off we went to the mall while Nanny watched the babies.
I have already told you all how I see things differently now and don't take anything, even breathing, for granted, but my new views on how the world works don't stop there. Take an ordinary shopping trip to the mall for example and here is what you get.
Cade has outgrown all of his sleepers, so we were on a hunt for new ones. I wanted to find the kind with the snaps because those make it easier to feed him with the g-tube without having to completely undress him. I was having a hard time finding that type in his size which is, by the way, 12-18 months now! I finally found one, but I instantly put it back. It had little police cars, fire trucks, and ambulance vehicles on it. Almost immediately, I hung it back on the rack as if it were burning my hand. "I will not be dressing him in that," I said to myself. That was a sure-fire way to tempt fate. Sure enough, as soon as I would put that on him, some emergency would arise, and there he would be in his prophetic sleeper riding in an ambulance. The paramedics would comment, "Oh he got dressed up for the occassion." I would sit there feeling guilty for dressing my son so irresponsibly. Why would any parent want to put their child in a sleeper with such dooming signs of emergency and danger? They may as well make a sleeper with cartoonish figures of ventilators, IVs, syringes, and feeding tubes in cute, pastel colors. I'm sure those would be big sellers!
On our way to the food court, Brenna asked to ride one of the kiddie rides. I got some change and let her ride. Fotunately, Bath and Body Works is located right next to the kiddie rides. We went in there to wash our hands to remove all the kiddie ride germs. Their sink is lined with an array of anti-bacterial soaps in every color and every scent. We were in anti-bacterial heaven and oh, how sweet it smelled! Could this really be the highlight of our shopping trip - trying out the various soaps and anti-bacterial hand gels?
Now we were ready for lunch. We got our Chick-fil-a nuggets and had a seat. Just a few tables down, I couldn't help but notice, a lady with a double stroller parked next to her table. Her twins looked to be about 9 months old (actual - not the 9 month olds who were really like 5 month olds like ours). She was feeding them from a little jar of baby food. I watched in amazement at how their little mouths just flew open like the beaks of baby birds at the first sight of food, their mouths popping open at every spoonful so obligingly. Their perfectly synchronized tango of eating continued, this one takes a bite, that one takes a bite, this one takes a bite, that one takes a bite, and so on and son on, until the food in the little jar vanished as if by magic. Oh, so that is how it is supposed to work! I held back the urge to yell across the food court, "Lady, you don't know how easy you have it." (On the same token, I once was seated across from a mom with quintuplets at a Chick-fil-a. I'm sure she would have liked to yell the same thing at me.)
As I people watched, I noticed lots of babies in strollers. Some looked to be only about a month old. Not one of these babies was covered. Didn't these parents know we were in the middle of RSV season? They strolled about willy-nilly to the dangers lurking around them. "Look at all these irresponsible parents," I said to myself. Of course, I realized I am the anomaly, the germ-freak, overprotective mother, but I have earned that title and I carry it proudly.
One day I hope to go to the mall pushing my double stroller with my daughter trotting alongside. We won't see danger looming in unsuspecting sleepers or run to "anti-bacterial heaven" after riding a kiddie ride. We won't spend our entire lunch staring at a woman feeding her babies or think badly of parents strolling their infants uncovered. We will simply enjoy our outing - one day!
I have already told you all how I see things differently now and don't take anything, even breathing, for granted, but my new views on how the world works don't stop there. Take an ordinary shopping trip to the mall for example and here is what you get.
Cade has outgrown all of his sleepers, so we were on a hunt for new ones. I wanted to find the kind with the snaps because those make it easier to feed him with the g-tube without having to completely undress him. I was having a hard time finding that type in his size which is, by the way, 12-18 months now! I finally found one, but I instantly put it back. It had little police cars, fire trucks, and ambulance vehicles on it. Almost immediately, I hung it back on the rack as if it were burning my hand. "I will not be dressing him in that," I said to myself. That was a sure-fire way to tempt fate. Sure enough, as soon as I would put that on him, some emergency would arise, and there he would be in his prophetic sleeper riding in an ambulance. The paramedics would comment, "Oh he got dressed up for the occassion." I would sit there feeling guilty for dressing my son so irresponsibly. Why would any parent want to put their child in a sleeper with such dooming signs of emergency and danger? They may as well make a sleeper with cartoonish figures of ventilators, IVs, syringes, and feeding tubes in cute, pastel colors. I'm sure those would be big sellers!
On our way to the food court, Brenna asked to ride one of the kiddie rides. I got some change and let her ride. Fotunately, Bath and Body Works is located right next to the kiddie rides. We went in there to wash our hands to remove all the kiddie ride germs. Their sink is lined with an array of anti-bacterial soaps in every color and every scent. We were in anti-bacterial heaven and oh, how sweet it smelled! Could this really be the highlight of our shopping trip - trying out the various soaps and anti-bacterial hand gels?
Now we were ready for lunch. We got our Chick-fil-a nuggets and had a seat. Just a few tables down, I couldn't help but notice, a lady with a double stroller parked next to her table. Her twins looked to be about 9 months old (actual - not the 9 month olds who were really like 5 month olds like ours). She was feeding them from a little jar of baby food. I watched in amazement at how their little mouths just flew open like the beaks of baby birds at the first sight of food, their mouths popping open at every spoonful so obligingly. Their perfectly synchronized tango of eating continued, this one takes a bite, that one takes a bite, this one takes a bite, that one takes a bite, and so on and son on, until the food in the little jar vanished as if by magic. Oh, so that is how it is supposed to work! I held back the urge to yell across the food court, "Lady, you don't know how easy you have it." (On the same token, I once was seated across from a mom with quintuplets at a Chick-fil-a. I'm sure she would have liked to yell the same thing at me.)
As I people watched, I noticed lots of babies in strollers. Some looked to be only about a month old. Not one of these babies was covered. Didn't these parents know we were in the middle of RSV season? They strolled about willy-nilly to the dangers lurking around them. "Look at all these irresponsible parents," I said to myself. Of course, I realized I am the anomaly, the germ-freak, overprotective mother, but I have earned that title and I carry it proudly.
One day I hope to go to the mall pushing my double stroller with my daughter trotting alongside. We won't see danger looming in unsuspecting sleepers or run to "anti-bacterial heaven" after riding a kiddie ride. We won't spend our entire lunch staring at a woman feeding her babies or think badly of parents strolling their infants uncovered. We will simply enjoy our outing - one day!
Wednesday, January 19, 2011
Million Dollar Babies
When I found out we were expecting twins, I began scouring craigslist and rummaging through consignment stores to find one more of everything we already had from Brenna and things like double strollers, swings, etc. I am a very frugal person, so I actually thought it was fun to find a great deal on slightly used baby items. I had the genius plan that I was going to save money by buying used items. I had it all figured out that I would be able to get all the baby supplies I needed for a fraction of what it would cost to get those items new. We were a little scared about the idea of adding two new people to our family and the added costs that would entail. It's ironically funny to think about the couple hundred dollars I saved compared to the thousands we ended up spending. So much for that plan of saving money!
Our out of pocket maximum for the year is $4,000 per child. We met that in just a few weeks. That doesn't seem too bad until you figure in all the co-pays you still have to pay. Each therapy appointment and pediatrician appointment has a co-pay of $25 and with two babies, each time we see a therapist or a pediatrician, we spend $50. Then you have the specialists who get $50 for each kid, so when we see those, there goes $100. The grand total of what we payed out was $16,200 for 2010. And we were worried about how we would pay for their college education when I was pregnant. At least, you have 18 years to prepare for that.
Out of curiosity, I called our insurance to find out how much they have paid out on each of the babies so far. The staggering total for Cade was $682,722.84, and Camdyn's shocking total came in at $724,648.18. Camdyn's total is greater for 2010 because of her week-long stay at Dell when she was sick with a cold. Since they did not know what was causing her oxygen needs, they did just about every test imaginable - EKG, chest scans, brain scans, and on and on. I am sure that Cade's total will surpass Camdyn's once his surgery and hospital stay bills roll in. If you haven't done the math yet, the total of what insurance has paid and what we have paid on both babies equals a whopping $1,423,571.02. That's almost one and a half MILLION dollars! Luckily, we have a lifetime maximum of $5 million on each baby. Let's hope we don't get anywhere near that number.
Our out of pocket maximum for the year is $4,000 per child. We met that in just a few weeks. That doesn't seem too bad until you figure in all the co-pays you still have to pay. Each therapy appointment and pediatrician appointment has a co-pay of $25 and with two babies, each time we see a therapist or a pediatrician, we spend $50. Then you have the specialists who get $50 for each kid, so when we see those, there goes $100. The grand total of what we payed out was $16,200 for 2010. And we were worried about how we would pay for their college education when I was pregnant. At least, you have 18 years to prepare for that.
Out of curiosity, I called our insurance to find out how much they have paid out on each of the babies so far. The staggering total for Cade was $682,722.84, and Camdyn's shocking total came in at $724,648.18. Camdyn's total is greater for 2010 because of her week-long stay at Dell when she was sick with a cold. Since they did not know what was causing her oxygen needs, they did just about every test imaginable - EKG, chest scans, brain scans, and on and on. I am sure that Cade's total will surpass Camdyn's once his surgery and hospital stay bills roll in. If you haven't done the math yet, the total of what insurance has paid and what we have paid on both babies equals a whopping $1,423,571.02. That's almost one and a half MILLION dollars! Luckily, we have a lifetime maximum of $5 million on each baby. Let's hope we don't get anywhere near that number.
Doesn't that look like $1.5 million dollars right there?
Look - I have over a million dollars just sitting and smiling in my kitchen sink. How many people can say that?
Tuesday, January 18, 2011
More Christmas
1/18/2010
We are still celebrating Christmas around here. In fact, we still have one more Christmas to go to at the end of the month. I have not updated pics in a while, so here are a few.
We are still celebrating Christmas around here. In fact, we still have one more Christmas to go to at the end of the month. I have not updated pics in a while, so here are a few.
Mommy and Camdyn
Twins X 2
So everyone always asks if twins run in my family, and I guess I now have to say yes. You mostly hear that twins run on the maternal side; however, the only other twins in our family are on my dad's side. The twins in the picture next to ours are Avery and Bailey. They are Lindsay's, my first cousin on my dad's side. They are also fraternal twins even though they look identical. Fraternal twins are hereditary; identical twins are not. Fraternal twins are hereditary because of a hereditary trait for the mother to release more than one egg at a time. Both eggs get fertilized and boom - you have twins! That is why it is considered to be a trait along the maternal line; however, some research says that the father, although he would not have twins himself unless it were because of his wife, can pass the hereditary trait on to his daughters. I wish I could find a definitive answer on the accuracy of this. We could also just wait and see because on my dad's side, my grandmother has 7 granddaughters. Of the 7 of us, 3 of us have had kids; 2 of the 3 of us have twins. Among the 3 of us, we have 6 girls and only 2 boys. That leaves 5 more granddaughters who have not yet had kids and 6 great-granddaughter so far. I can't wait to see if more twins appear in our family line even though I will be a nervous wreck if any of them announce they are having twins!
both sets of twins with their big sisters
Brenna, Cade, Camdyn, Avery, Bailey, Lexie
This is about as close as we can get to a good family picture. We really need to work on getting a decent family picture.
Camdyn loved the paper. She liked tearing it up in tiny pieces and eating it.
Cade on Aunt Megan's lap opening a present with Aunt Ellen.
Camdyn sitting on her own for a few seconds.
Camdyn showing what a big girl she is.
Cade smiling and giggling. What a cutie!
Camdyn cuddling up to Cade. She always cuddles up next to him. It is so sweet most of the time. I woke up one morning to her crying loudly. I went to see what the problem was and found Cade laying on her arm and her trying to get it unstuck. She is going to have to watch out or her brother is going to squash her.
Look at this sweetness. She helped Mommy decorate the living room with tissue paper everywhere in little torn up, slobbered-on pieces. She was so proud of her work.
Cade's surgery
1/18/2011
Cade's surgery went well. We spent a weekend in the hospital and were able to come back home after being trained on how to clean around the button and how to do his feedings. It is not much different from what we were already doing. Cade was uncomfortable and a little fussy after his surgery, but overall he did great. I think he was more bothered by the cannula in his nose and the IV in his little hand than he was by the g-button. He needed oxygen for only about a day after the surgery. They started his feeds slowly and we started out giving him just breast milk to make it easier on his stomach. Then we gave him the formula and breast milk like he usually gets, and he did fine with that too.
I was very worried about cleaning the button and giving him g-tube feedings, but it is really not hard at all. Of course I wish he would just eat, but this is not as hard as I had imagined it would be. I am still a little queasy about cleaning around it, and if you forget to clamp the tube, stomach contents can ooze out of the tube. I must say that is pretty gross, but I suppose it is no more gross than when Brenna would spit up on us all the time. That was still stomach contents, and it was everywhere.
Since we have been home, we have noticed that he is a lot more vocal. He is making more sounds which is a great improvement. His voice is still somewhat raspy and will probably be that way. He can now lay on his tummy, and it doesn't bother him at all. He is still not rolling over or crawling yet. I don't know if it is because of his prematurity, his size, or just his laziness. We are working on that. He is perfectly content with watching Camdyn roll all over the living room, and she has become very good at that. We will be starting with a new therapist for feeding soon. I hope she will be able to shed some light on this and help him make some progress.
Our new problem is that I found out our insurance only covers 20 therapy visits per year, and he is going to need way more than that. I am stumped on what my next step should be to get him what he needs. We may start looking into getting a secondary insurance. If anyone who reads this blog knows what to do when you don't qualify for Medicaid, your insurance doesn't cover what you need, and the free therapist through Early Childhood Intervention is completely useless, please let me know. Appealing the insurance won't help; I've already been told that 20 therapies is the hard limit meaning they will not even take appeals for more. Asking for a new ECI therapist won't work because she is the only one who services our area. Why is this preemie world so difficult to navigate?
Camdyn visiting Cade in the hospital
my sweet baby boy in the hospital
What a handsome face with no tubes or tape!
Thursday, January 6, 2011
9 Months (5 months adjusted)
1/6/2011
The babies turned 9 months old yesterday. At their pediatrician's appointment, Cade weighed in at 19 lbs. 5 oz. and Camdyn gained a little making her 13 lbs. 11 oz. I was hoping she would be 14 lbs, but she wasn't quite there. She does not look remotely close to being a 9 month old; she doesn't even look like a 5 month old. It is so strange to think that in just 3 months the babies will be 1 year old. That does not even seem possible.
Their doctor is just amazed at how well they are doing. He did recommend getting private physical therapy weekly again for both Camdyn and Cade to work on sitting, crawling, etc. They can both prop sit for a short time, but they need to work on building the core strength to sit for longer periods. Overall, they are doing great. Cade is starting to push up more with his arms and sit or stand assisted longer. Camdyn is all over the place now but not by crawling. She pushes her legs lying on her back to do a backwards scoot. With the combination of her backwards crawl and rolling over, she can now move all over the living room floor, and since she is so tiny, she is very good at hide and seek. She manages to get under the chair, under the couch, and under the Christmas tree (when it was still up).
We also had our 9 month follow up appointment with the opthamologist that we saw in the NICU, and everything checked out great. From what I have read, it is amazing that their eyes are so good. Most micro-preemies develop ROP (retinopathy of prematurity) and require eye surgery. We are so lucky that neither Camdyn or Cade had this. We also have to thank our NICU for monitoring their oxygen levels so closely which helped avoid any damage to their eyes. We don't have to see this doctor again until the babies are 3 years old! That will just be for a follow up eye exam.
Cade's g-tube surgery is tomorrow morning at Dell. I am growing more and more nervous as the time gets closer. We were told that the PDA surgery was a "routine" surgery too, and Cade ended up with vocal cord paralysis from it causing a host of issues. I know that we had no choice but to have that surgery; it saved his life, but what the doctors think of as "routine" is not "routine" to parents. As a parent, you know that this "routine" surgery means that your child will be on anesthesia and be intubated once again. I know he needs this surgery and that it will be better for him overall, but I am still nervous about it. I know I will not be getting any sleep tonight (not that I ever get much anyway). I am also strangely sad that his little tummy will no longer look like it does. I know this is crazy. He already has a huge scar on the right side of his tummy. His skin was so thin and fragile that when they pulled the sticker probe off, it pulled some of his skin off too. (Camdyn has a matching scar on her tummy as well.) What's one more scar when you already have dozens of them, right? I just don't want him to have to endure anything else. Please pray for our little man to get through surgery well and to recover quickly.
God - We pray that Cade's surgery goes smoothly tomorrow. Watch over him and protect him tomorrow as he is put under anesthesia. Help him to come out of the anesthesia and off the ventilator easily. Guide the surgeon and nurses tomorrow as they work on my sweet baby boy. Give them wisdom. Protect Cade and help him recover quickly. I leave this in your healing hands. Amen.
The babies turned 9 months old yesterday. At their pediatrician's appointment, Cade weighed in at 19 lbs. 5 oz. and Camdyn gained a little making her 13 lbs. 11 oz. I was hoping she would be 14 lbs, but she wasn't quite there. She does not look remotely close to being a 9 month old; she doesn't even look like a 5 month old. It is so strange to think that in just 3 months the babies will be 1 year old. That does not even seem possible.
Their doctor is just amazed at how well they are doing. He did recommend getting private physical therapy weekly again for both Camdyn and Cade to work on sitting, crawling, etc. They can both prop sit for a short time, but they need to work on building the core strength to sit for longer periods. Overall, they are doing great. Cade is starting to push up more with his arms and sit or stand assisted longer. Camdyn is all over the place now but not by crawling. She pushes her legs lying on her back to do a backwards scoot. With the combination of her backwards crawl and rolling over, she can now move all over the living room floor, and since she is so tiny, she is very good at hide and seek. She manages to get under the chair, under the couch, and under the Christmas tree (when it was still up).
We also had our 9 month follow up appointment with the opthamologist that we saw in the NICU, and everything checked out great. From what I have read, it is amazing that their eyes are so good. Most micro-preemies develop ROP (retinopathy of prematurity) and require eye surgery. We are so lucky that neither Camdyn or Cade had this. We also have to thank our NICU for monitoring their oxygen levels so closely which helped avoid any damage to their eyes. We don't have to see this doctor again until the babies are 3 years old! That will just be for a follow up eye exam.
Cade's g-tube surgery is tomorrow morning at Dell. I am growing more and more nervous as the time gets closer. We were told that the PDA surgery was a "routine" surgery too, and Cade ended up with vocal cord paralysis from it causing a host of issues. I know that we had no choice but to have that surgery; it saved his life, but what the doctors think of as "routine" is not "routine" to parents. As a parent, you know that this "routine" surgery means that your child will be on anesthesia and be intubated once again. I know he needs this surgery and that it will be better for him overall, but I am still nervous about it. I know I will not be getting any sleep tonight (not that I ever get much anyway). I am also strangely sad that his little tummy will no longer look like it does. I know this is crazy. He already has a huge scar on the right side of his tummy. His skin was so thin and fragile that when they pulled the sticker probe off, it pulled some of his skin off too. (Camdyn has a matching scar on her tummy as well.) What's one more scar when you already have dozens of them, right? I just don't want him to have to endure anything else. Please pray for our little man to get through surgery well and to recover quickly.
God - We pray that Cade's surgery goes smoothly tomorrow. Watch over him and protect him tomorrow as he is put under anesthesia. Help him to come out of the anesthesia and off the ventilator easily. Guide the surgeon and nurses tomorrow as they work on my sweet baby boy. Give them wisdom. Protect Cade and help him recover quickly. I leave this in your healing hands. Amen.
Tuesday, January 4, 2011
Happy, Boring New Year!
If you read the previous posts about Cade's evil ng tube, then you know that our New Year's Eve was rather stressful with Cade coughing out his tube, Jimmy having to drive back home to reinsert it, me worrying constantly, and finally Jimmy getting back just in time to ring in the New Year. After all of this, I asked Jimmy if he thought 2011 was going to be better for us. Before I let him answer, I said, "It has to be!" He replied without thinking twice, "I can't say 2010 was that bad." I looked at him like he was crazy! Then he said, "We got two beautiful babies, you have a job, I have a job, and we got a new house. The way I see it 2011 is probably going to be pretty boring!" He is succint; I am verbose. It took me over 100 posts on this blog and who knows how many words to say what he said in just two sentences. So here's a cheers to boring! I wish you all a Happy, Boring New Year. May it not have any of the "excitement" of our past year. Forget the New Year's resolutions that you probably won't keep anyway. Resolve to celebrate all the everyday, mundane "boring" aspects that make up your life and be grateful for them.
Happy New Year!
Happy New Year!
(Cade looks very mad at me for putting yet another dumb hat on his head.)
Monday, January 3, 2011
Babies' 1st Christmas
We had a wonderful first Chrismas with the babies. We enjoyed every second of it. I posted a lot of new pictures.
Camdyn and Cade are really interacting a lot more with each other. It is so fun to watch them.
Cade decided he likes eating Camdyn's hand - just not food!
Cade got his first haircut from Nanny on Christmas Eve.
looking handsome!
Mommy with her sweet baby boy on his 1st Christmas
Mommy with her precious baby girl on her 1st Christmas
Here's an example of how impossible it is for us to get a good group picture. Brenna did not want to take a picture so she has a scowl on her face, Cade decided he did not want Camdyn in the picture, and Camdyn is just trying to figure out why her brother is pushing her away. This is my life! ( . . . and I'm still smiling!)
Camdyn on her present
Cade eating wrapping paper - again anything but food!
our precious kiddos on Christmas morning - It took Jim and I a while to get used to seeing 5 stockings hanging on our fireplace. It looks like so many! Five looks like so much more than the 3 we had last year.
Who really is Santa's favorite? Oh, how could he pick; just look at how adorable they are!
Cade loved his new toy. He was so interested in it.
Cade making big smiles for Aunt April. He was giggling too. It was precious.
"Too much Christmas; I'm tired!"
Daddy and Camdyn are tired too. Look at her sweet little hand on Daddy's face.
Saturday, January 1, 2011
Cade and the Adventures of his Evil NG Tube
We have had our surgery consultation for the placement of Cade's g-tube. He will be getting the surgery sometime in January, and we could not be more ready. We have come to a point that the idea of having to put one more ng tube in makes us both want to vomit. Caution: This post is not for the squeamish, not for those who don't like graphic descriptions or stories of torturing infants. Okay, well, you can't say that I didn't warn you.
Cade has had a tube shoved down his nose and the back of his throat since his time in the NICU. It makes him constantly cough and gag. Your natural defense is to cough out any foreign object lodged in the back of your throat. At first, he was not successful in coughing it out, but now that he is bigger and stronger, he has the strength to cough hard enough that the tube which is in his stomach will come up out of his mouth. This means he then has a tube going through his nose and out of his mouth. At this point, we have to completely pull the tube out and re-insert it which is not an easy task.
To insert the tube, we have to hold him down with full force and hold his head still. Then we take this long skinny tube and shove it down his nose, preferably as quick as possible before he really knows what is happening to him. As one of us is shoving the tube in, the other who is holding him down tries to look into the back of his throat as he is screaming to make sure the tube is not coming out of his mouth instead of down his throat like it should. Lately, it comes out of his mouth more because he knows how to clench down. It usually takes at least 5 attempts before we manage to get it to go down correctly. Of course, then we have to worry if we managed to actually get it into his stomach! The nurses warned us that if it isn't inserted correctly, it could go into his lungs. Well, isn't that just great?! We then listen with a stethoscope to his stomach as we push air through the tube with a syringe. If we hear the magic "poof" sound of the air hitting his stomach, then we know we have it in, and since we have been holding our breaths during this whole process, we can finally breathe out. Then we pick up our screaming baby and try to comfort him as I am sure he is wondering why we are torturing him.
Even though we tape the tube down thoroughly, he has on several occasions, found a way to grab it and pull it out, but the coughing it out is so much worse. Somehow, he is able to cough it out at the most inopportune times. The first time was in the McDonald's drive-through. I was waiting in line, and I hear him coughing up a storm in the back seat. Then Brenna tells me, "Mommy, Cade spitted up." I got out of the car to check on him, and sure enough, there he was with spit up all over him and a tube hanging out of his mouth. I quickly pulled it out, took the tape off, and cleaned him up. The drive-through line was completely backed up, and I felt like everyone was staring at me. All I could think was that if anyone honks at me, I am going to go off! Luckily, the people behind me were very patient, and I did not have to cause a scene. The second time happened just last night. Jim's parents came in to town to watch the kids so we could go out and celebrate New Year's with some friends. At about 10 PM, they called us to let us know that Cade had coughed out his tube, so Jim left the party and drove home to put the tube back in. He told me I should stay, and he would be back as soon as possible. Of course, I should have insisted on going with him because all I did was call him every 5 minutes. It took him 6 attempts to get the tube back in, but he finally got it, and headed back to the party. He got back to the party at 11:52 PM, so we were still able to count down the new year together at midnight.
As you can probably imagine, we are so ready to be done with the evil ng tube, and I can only imagine how my sweet son must feel. He is so laid back and easy going and is such a great baby. I'm sure he can not understand why we have to torture him. Very soon, the days of torture and the battles with the evil ng tube will draw to an end.
Update (1/3)- I thought I was done with this post since we are scheduled for the g-tube soon. Since the episode on New Year's Eve (only 3 days ago), Cade has again pulled the tube out last night and then coughed it out again today. Last night, it took us 8 attempts to get it back in again. At one point, we thought we had it in, but he soon started coughing and sputtering a lot. I then noticed traces of blood mixed in the drool he was coughing up. I quickly pulled the tube back out. Instead of going down correctly or coming out of his mouth, it had coiled up inside his nasal cavity. Today when he coughed it out, I called the pediatrician to ask if I could just pay them to reinsert it. Well, that was a great idea except that they are overbooked and have no time to see him. I have already tried 10 times with no success. It came out of his mouth 9 times and coiled up inside his nose once. Jim is coming home early from work to try his luck. I am about to just pay $100 to go to the ER to have someone else do it! I did call the surgeon to get a response about scheduling the surgery. I told them that we needed to be scheduled ASAP! We are scheduled for Cade to get his g-tube on Friday. Keep him in your prayers that the surgery will go well and that he will make a speedy recovery. Also pray that after we get this ng tube in today that it will stay in until Friday.
Cade has had a tube shoved down his nose and the back of his throat since his time in the NICU. It makes him constantly cough and gag. Your natural defense is to cough out any foreign object lodged in the back of your throat. At first, he was not successful in coughing it out, but now that he is bigger and stronger, he has the strength to cough hard enough that the tube which is in his stomach will come up out of his mouth. This means he then has a tube going through his nose and out of his mouth. At this point, we have to completely pull the tube out and re-insert it which is not an easy task.
To insert the tube, we have to hold him down with full force and hold his head still. Then we take this long skinny tube and shove it down his nose, preferably as quick as possible before he really knows what is happening to him. As one of us is shoving the tube in, the other who is holding him down tries to look into the back of his throat as he is screaming to make sure the tube is not coming out of his mouth instead of down his throat like it should. Lately, it comes out of his mouth more because he knows how to clench down. It usually takes at least 5 attempts before we manage to get it to go down correctly. Of course, then we have to worry if we managed to actually get it into his stomach! The nurses warned us that if it isn't inserted correctly, it could go into his lungs. Well, isn't that just great?! We then listen with a stethoscope to his stomach as we push air through the tube with a syringe. If we hear the magic "poof" sound of the air hitting his stomach, then we know we have it in, and since we have been holding our breaths during this whole process, we can finally breathe out. Then we pick up our screaming baby and try to comfort him as I am sure he is wondering why we are torturing him.
Even though we tape the tube down thoroughly, he has on several occasions, found a way to grab it and pull it out, but the coughing it out is so much worse. Somehow, he is able to cough it out at the most inopportune times. The first time was in the McDonald's drive-through. I was waiting in line, and I hear him coughing up a storm in the back seat. Then Brenna tells me, "Mommy, Cade spitted up." I got out of the car to check on him, and sure enough, there he was with spit up all over him and a tube hanging out of his mouth. I quickly pulled it out, took the tape off, and cleaned him up. The drive-through line was completely backed up, and I felt like everyone was staring at me. All I could think was that if anyone honks at me, I am going to go off! Luckily, the people behind me were very patient, and I did not have to cause a scene. The second time happened just last night. Jim's parents came in to town to watch the kids so we could go out and celebrate New Year's with some friends. At about 10 PM, they called us to let us know that Cade had coughed out his tube, so Jim left the party and drove home to put the tube back in. He told me I should stay, and he would be back as soon as possible. Of course, I should have insisted on going with him because all I did was call him every 5 minutes. It took him 6 attempts to get the tube back in, but he finally got it, and headed back to the party. He got back to the party at 11:52 PM, so we were still able to count down the new year together at midnight.
As you can probably imagine, we are so ready to be done with the evil ng tube, and I can only imagine how my sweet son must feel. He is so laid back and easy going and is such a great baby. I'm sure he can not understand why we have to torture him. Very soon, the days of torture and the battles with the evil ng tube will draw to an end.
Update (1/3)- I thought I was done with this post since we are scheduled for the g-tube soon. Since the episode on New Year's Eve (only 3 days ago), Cade has again pulled the tube out last night and then coughed it out again today. Last night, it took us 8 attempts to get it back in again. At one point, we thought we had it in, but he soon started coughing and sputtering a lot. I then noticed traces of blood mixed in the drool he was coughing up. I quickly pulled the tube back out. Instead of going down correctly or coming out of his mouth, it had coiled up inside his nasal cavity. Today when he coughed it out, I called the pediatrician to ask if I could just pay them to reinsert it. Well, that was a great idea except that they are overbooked and have no time to see him. I have already tried 10 times with no success. It came out of his mouth 9 times and coiled up inside his nose once. Jim is coming home early from work to try his luck. I am about to just pay $100 to go to the ER to have someone else do it! I did call the surgeon to get a response about scheduling the surgery. I told them that we needed to be scheduled ASAP! We are scheduled for Cade to get his g-tube on Friday. Keep him in your prayers that the surgery will go well and that he will make a speedy recovery. Also pray that after we get this ng tube in today that it will stay in until Friday.
Subscribe to:
Posts (Atom)