I would like to share a little bit about what our days are like with a child who has CF - not as a bragging point (so please don't think that), but to help educate and offer a little perspective. I certainly never thought a ton about many things that we've been through. I certainly was aware of them, but sometimes you don't realize the full situation until you've been through it. Ok, stepping down off the soapbox.
Our days are pretty structured, and there are many things that have become routine: Judith gets lots of play time/interaction time, but she also has new therapies and medicines that need to be squeezed into the day. She takes an iron supplement daily (that's for the prematurity, and I'm hoping we can wean her off of that in the near future), along with a special vitamin designed for people with cystic fibrosis. I honestly don't know which was worse: the smell from the Poly-Vi-Sol with iron that she was on from the beginning in the NICU, or the smell from the "cherry flavored" Vitamax that she now takes. Oh.my.goodness. It's more like rotting cherries or something equally as gross! I am SO glad that I can put it into her bottle of formula and give it to her that way, because I doubt she'd take it otherwise! Blech!
She's still on the Zantac for reflux, and the only thing that changes with that is the dosage - they usually have to increase it once she reaches a certain weight so it continues to be effective.
Twice a day, we have to do 2 special things for her CF. Judith has a maintenance inhaler (Albuterol), and gets 2 puffs at each dosing time. She does pretty well with it - most of the time, she'll cooperate and will even "talk" to me through the mask of the spacer (she's been known to lick the valve where the inhalant comes out...), and there are times when she fights taking it. The other thing we have to do is chest physiotherapy, or CPT (or chest PT). This is an important therapy to do: it is the one where we clap the mucous out of the small airways in her lungs and move it to the large airways so she can cough it up. In a person with CF, the body makes abnormal mucous, and it tends to be thicker and stickier. If it remains in the small airways, infection can set in and cause lung damage. Clapping it to the large airways helps the person with CF cough it out of the lungs, therefore helping to reduce the risk of infection (granted, infection can still set in, but it's a good preventative measure). It takes about 24 minutes to do the actual therapy, but can take us up to a half hour to complete it if Judith is really fighting it.
Right now, we can escape the adventure of adding digestive enzymes to every meal she takes, because her pancreas is functioning normally. Knock on wood that it continues to do so. They will monitor this and check function every so often.
Everything goes smoothly, and it really doesn't take a lot of time to do. We have a board to keep track of everything, but I'm at the point where I can generally remember dosing amounts, etc. It was super overwhelming in the beginning, but just like everything else we've encountered, we're learning to adapt.
Tuesday, May 31, 2011
Sunday, May 29, 2011
Solids and Rolling
Or in Buster's case, it could be rolling in solids haha!
We are having an eventful weekend so far! Buster is outside right now (it's about 5 pm Sunday), did his thing in our yard, then ventured over to our neighbor's side, sniffing the grass. He proceeded to roll around for quite a long time, rubbing his scent into the grass. I have a feeling Marbles the cat was out there at some point, and Buster decided to rub out her scent. He was having a grand time, making the most ridiculous noises and kicking his paws into the air!
I've taken the plunge and started Judith on solids. We got the information on starting almost 2 months ago when she had her last well-baby visit, but I didn't feel like she (or me for that matter!) was ready at that time. But lately I've felt more confident, so we decided to try them yesterday.
We started yesterday off with some rice cereal. Me in my infinite Midvale-yness completely screwed up the measurements for the cereal-to-formula ratio. The box said to mix 1 tbsp with 4-5 tbsps (equivalent to 2 oz) of breast milk or formula (in our case, formula). I couldn't reach my measuring spoons in the cupboard because someone decided to move them to the highest shelf and shove them way in the back (thanks, John...), so I grabbed the 1/4 tsp that I use to add salt to Judith's formula. Had I thought it through, I would've realized that 4 of those would equal 1 tsp, not 1 tbsp. So the mixture was pretty runny.
Judith got some in her mouth, but kept spitting it out. I figured we'd be good to try it today...with the correct measurements. Not happening. Judith absolutely HATED the rice cereal. I don't think she cared for the texture or the flavor, based off of her screaming when I tried to give it to her, after giving her some formula (we did a bottle first, solids second). I decided to give up on that, and went to get some Stage 1 apple puree instead. Success! She loved the apples! She made some cute "testing new food" faces - to be fair, the apples are slightly bitter, and I doubt Gerber used a sweeter apple to make the puree. But she enjoyed the texture, and moved it around in her mouth, actually swallowing the majority of it!
Rice cereal = 0, Apples = 1
Needless to say I'm not forcing any more cereal on her!
We're fortunate, because a co-worker of my mom's gave us a bunch of jars of baby food, so I can try out different fruits and veggies with her before I make my own purees. I know a lot of people are either one camp or the other, but I want to make sure Judith actually likes something before I invest the time in making my own purees of something.
I'm hoping that she continues to do well with the solids, but I have a feeling we have a long, slow road ahead of us when it comes to introducing things beyond purees.
We are having an eventful weekend so far! Buster is outside right now (it's about 5 pm Sunday), did his thing in our yard, then ventured over to our neighbor's side, sniffing the grass. He proceeded to roll around for quite a long time, rubbing his scent into the grass. I have a feeling Marbles the cat was out there at some point, and Buster decided to rub out her scent. He was having a grand time, making the most ridiculous noises and kicking his paws into the air!
I've taken the plunge and started Judith on solids. We got the information on starting almost 2 months ago when she had her last well-baby visit, but I didn't feel like she (or me for that matter!) was ready at that time. But lately I've felt more confident, so we decided to try them yesterday.
We started yesterday off with some rice cereal. Me in my infinite Midvale-yness completely screwed up the measurements for the cereal-to-formula ratio. The box said to mix 1 tbsp with 4-5 tbsps (equivalent to 2 oz) of breast milk or formula (in our case, formula). I couldn't reach my measuring spoons in the cupboard because someone decided to move them to the highest shelf and shove them way in the back (thanks, John...), so I grabbed the 1/4 tsp that I use to add salt to Judith's formula. Had I thought it through, I would've realized that 4 of those would equal 1 tsp, not 1 tbsp. So the mixture was pretty runny.
Judith got some in her mouth, but kept spitting it out. I figured we'd be good to try it today...with the correct measurements. Not happening. Judith absolutely HATED the rice cereal. I don't think she cared for the texture or the flavor, based off of her screaming when I tried to give it to her, after giving her some formula (we did a bottle first, solids second). I decided to give up on that, and went to get some Stage 1 apple puree instead. Success! She loved the apples! She made some cute "testing new food" faces - to be fair, the apples are slightly bitter, and I doubt Gerber used a sweeter apple to make the puree. But she enjoyed the texture, and moved it around in her mouth, actually swallowing the majority of it!
Rice cereal = 0, Apples = 1
Needless to say I'm not forcing any more cereal on her!
We're fortunate, because a co-worker of my mom's gave us a bunch of jars of baby food, so I can try out different fruits and veggies with her before I make my own purees. I know a lot of people are either one camp or the other, but I want to make sure Judith actually likes something before I invest the time in making my own purees of something.
I'm hoping that she continues to do well with the solids, but I have a feeling we have a long, slow road ahead of us when it comes to introducing things beyond purees.
Thursday, May 26, 2011
Bombshell
For some of my readers, this is old news. For others, this will be a shock, but I refuse to sugar coat it. John and I were waiting a bit until we felt comfortable "coming clean", so to speak, with it.
I can't remember if I had blogged about Judith's newborn screen before. John is a CF carrier, and she came back "positive" for the genetic screening. I had been tested by the reproductive endocrinologist during infertility testing, and came back negative. So no big deal - Judith should come back a carrier, right?
Wrong.
Judith has cystic fibrosis.
We found out a little more than a month ago. Because of that positive result, we had to go for a sweat test to confirm that she is either a carrier or has the disease. They couldn't collect enough sweat during the first test in February because she was still too tiny (only over 6 lbs at the time). We repeated the test in April, and they collected enough of a sample. Her numbers came back around 61-62, meaning she has the disease (according to the CF Foundation, the criteria for infants under 6 months of age is as follows: equal to or less than 29mmol/L = CF very unlikely, 30-59mmol/L = CF is possible, greater than or equal to 60 = CF is likely to be diagnosed).
So what does this mean for us?
Honestly, we don't know, because there are so many unknowns. The good news? The life expectancy for people with CF is increasing. As of right now, the average life expectancy for someone with CF is the mid-30s. Judith is also with a great team of doctors at Hershey Medical Center, and I have full confidence that she will get the best and most up-to-date care there.
We don't know the exact mutation she carries - they drew a ton of blood from her on Tuesday (that was an adventure...), and some of that is being sent out for genetic testing. We do know that the most common mutation, Delta F 508, is present (the gene John carries), but now we need to find out what I apparently carry (to get CF, you have to get a gene from both parents). I wish that the test wasn't so expensive, and that the REs would test for all mutations right away - it would have been helpful to know that I carry a rare mutation, and maybe I wouldn't have been so casual about the positive result in the first place. But you can't change the past. Anyway, we'll find out what the mutation is in a few weeks when we go for our next appointment.
This is a big lifestyle change for us, and we have to be very careful around anyone who's sick. Not just for the preemie status anymore, and this will be a forever precaution - not something I had hoped would "go away," so to speak, in a couple years. We fully intend to give Judith as normal a life as possible, and she will be able to do things that she wants to try. Only difference will be she has to be careful with illness, she'll have to take different medications for the rest of her life, and she'll have to do the therapies to clap the mucous out of her small airways to the large airways to help prevent infection.
I can't remember if I had blogged about Judith's newborn screen before. John is a CF carrier, and she came back "positive" for the genetic screening. I had been tested by the reproductive endocrinologist during infertility testing, and came back negative. So no big deal - Judith should come back a carrier, right?
Wrong.
Judith has cystic fibrosis.
We found out a little more than a month ago. Because of that positive result, we had to go for a sweat test to confirm that she is either a carrier or has the disease. They couldn't collect enough sweat during the first test in February because she was still too tiny (only over 6 lbs at the time). We repeated the test in April, and they collected enough of a sample. Her numbers came back around 61-62, meaning she has the disease (according to the CF Foundation, the criteria for infants under 6 months of age is as follows: equal to or less than 29mmol/L = CF very unlikely, 30-59mmol/L = CF is possible, greater than or equal to 60 = CF is likely to be diagnosed).
So what does this mean for us?
Honestly, we don't know, because there are so many unknowns. The good news? The life expectancy for people with CF is increasing. As of right now, the average life expectancy for someone with CF is the mid-30s. Judith is also with a great team of doctors at Hershey Medical Center, and I have full confidence that she will get the best and most up-to-date care there.
We don't know the exact mutation she carries - they drew a ton of blood from her on Tuesday (that was an adventure...), and some of that is being sent out for genetic testing. We do know that the most common mutation, Delta F 508, is present (the gene John carries), but now we need to find out what I apparently carry (to get CF, you have to get a gene from both parents). I wish that the test wasn't so expensive, and that the REs would test for all mutations right away - it would have been helpful to know that I carry a rare mutation, and maybe I wouldn't have been so casual about the positive result in the first place. But you can't change the past. Anyway, we'll find out what the mutation is in a few weeks when we go for our next appointment.
This is a big lifestyle change for us, and we have to be very careful around anyone who's sick. Not just for the preemie status anymore, and this will be a forever precaution - not something I had hoped would "go away," so to speak, in a couple years. We fully intend to give Judith as normal a life as possible, and she will be able to do things that she wants to try. Only difference will be she has to be careful with illness, she'll have to take different medications for the rest of her life, and she'll have to do the therapies to clap the mucous out of her small airways to the large airways to help prevent infection.
Thursday, May 19, 2011
Buster's Antics
Buster is at it again!
Yesterday, right before we fed the dogs (we had choir rehearsal, so it was an earlier dinner for them), Buster decided to disappear upstairs. He's rarely up there longer than what it takes him to find a bone and bring it back downstairs. I was holding Judith at the time, and couldn't find him anywhere, so I called him and said, "Dinner!" so he would come down. I hear him descending the stairs, and saw he had something hanging off of his jowls. I couldn't figure out what it was at first: I thought maybe it's a long string of carpet and he somehow got it stuck on his face. But the longer I looked at it, the more I thought, "That really looks like dental floss..."
I said to Buster, "What's on your jowls?" and asked John to pull it off. Lo and behold, he tried to sample some mint flavored dental floss. John immediately assumed he was rooting in the trash (neither dog has ever done that, so why would they start now?), but I asked him if he's sure he threw it completely in the trash when he was done with it the previous night. I can't see how it was completely in there, because Buster wouldn't have been able to fish it out. I have my suspicions that an end was hanging out over the can, Buster caught a whiff of the mint flavoring, and decided to try it out.
At least he didn't eat it. I have visions of performing a flossectomy the next time he would go out to poop, much like the scene in an episode of Family Guy when Brian eats the floss and they have to pull it out of his butt.
I'm glad it didn't get to that point!
Yesterday, right before we fed the dogs (we had choir rehearsal, so it was an earlier dinner for them), Buster decided to disappear upstairs. He's rarely up there longer than what it takes him to find a bone and bring it back downstairs. I was holding Judith at the time, and couldn't find him anywhere, so I called him and said, "Dinner!" so he would come down. I hear him descending the stairs, and saw he had something hanging off of his jowls. I couldn't figure out what it was at first: I thought maybe it's a long string of carpet and he somehow got it stuck on his face. But the longer I looked at it, the more I thought, "That really looks like dental floss..."
I said to Buster, "What's on your jowls?" and asked John to pull it off. Lo and behold, he tried to sample some mint flavored dental floss. John immediately assumed he was rooting in the trash (neither dog has ever done that, so why would they start now?), but I asked him if he's sure he threw it completely in the trash when he was done with it the previous night. I can't see how it was completely in there, because Buster wouldn't have been able to fish it out. I have my suspicions that an end was hanging out over the can, Buster caught a whiff of the mint flavoring, and decided to try it out.
At least he didn't eat it. I have visions of performing a flossectomy the next time he would go out to poop, much like the scene in an episode of Family Guy when Brian eats the floss and they have to pull it out of his butt.
I'm glad it didn't get to that point!
Monday, May 9, 2011
Busy Weekend
What a busy weekend!
Thursday night began the chaos. We have 2 long leads staked into the ground out back for the dogs to go out on. Long story short, one of the leads was rusted and fraying, and we knew it would need to be replaced soon. John let Buster & Lady out for the night - Lady did her thing and rushed back into the house, and Buster was doing his usual sniff-every-inch-of-the-patio-and-yard-because-there-might-be-something-interesting thing. Next thing John knew Buster was way out in the yard (much farther than he should have been), sniffing around the little tree. Apparently the actual lead completely separated from the clip, and Buster got free. I don't know if he realized what had happened - I'm figuring his thought process went something like this:
"Wow, there are some good smells in the grass tonight! Hey, there's a good smell here, let's check it out. Ooh, I haven't smelled here before for some reason. Let's keep investigating..."
John quickly noticed what was happening, and immediately took off after Buster. I think Mr. Boo finally realized what was going on, and took off toward our neighbor's yard, then immediately onto the patio and up to the door (I'm guessing he followed his usual trail he takes to come back in). Poor dog probably thought he was in a fenced yard again and had free roam.
Yeah...that lead was replaced this weekend.
On Friday we took Judith to John's place of employment for a baby shower. Everyone was beyond thrilled to finally meet our little peanut! John's department had gifts and a cake waiting for us, and his supervisor also had lunch consisting of delicious meatball sandwiches, deli salads, and chips (yum!). Judith was definitely a hit, and everyone wants to know when we'll bring her back again! We topped the day off with bath time for the doggies. They finally smell nice again, and they're actually black & white instead of black & off-white.
Saturday was a long, but very fun day. Judith attended her very first CRHS (Conrail Historical Society) Rail-B-Q. We railfanned our way over to my in-laws' house (we saw a few trains), visited with my mother-in-law, then went to the park for the Rail-B-Q. We saw some good action along the Pittsburgh line, and Judith got to meet John's best friend (and his wife and daughter) along with many of the other members of the group.
Sunday was my first official Mother's Day. I was able to "celebrate" last year with Buster and Lady, but it was different this year with Judith here! I got the necklace I wanted, a card from Judith, and a jade tree from Buster, Lady, & Judith. I am fascinated by the jade tree, but I have no clue how to care for it. Apparently John doesn't either, so some research is in order! It's a cute little plant though.
Anyway, we drove to one of the churches John used to play at and attended services there. It was so nice to go back for a visit, and everyone loved meeting Judith! It's so nice when we can go back for a visit, but we both always end up leaving a little sad because it's such a nice church and the people are really warm and caring. Don't get me wrong - there are tons of people that care about us at our current church. It's really one of those things that you don't realize how much you miss being somewhere until you're not there anymore, and you develop a different appreciation of it.
The rest of Sunday was spent at home - we were originally going to drive from church down to my parents' house to watch the annual Make-A-Wish convoy (it goes right past the house), but my one grandmother got sick and we can't take Judith there until she's better. While I was bummed about missing the convoy, it felt good to be able to just relax at home and spend the remainder of the day with John & Judith. We did have to make a trip to Petsmart and Target for dog food and formula, but thankfully those were quick trips and we could get back home quickly.
Today was a recovery day, one where I attempt to get Judith back on her regular schedule. Naturally she decided to scream like a maniac when I would put her down for longer than 10 seconds (literally, with very few exceptions). Hopefully tomorrow will be better, because she has PT again in the afternoon.
Thursday night began the chaos. We have 2 long leads staked into the ground out back for the dogs to go out on. Long story short, one of the leads was rusted and fraying, and we knew it would need to be replaced soon. John let Buster & Lady out for the night - Lady did her thing and rushed back into the house, and Buster was doing his usual sniff-every-inch-of-the-patio-and-yard-because-there-might-be-something-interesting thing. Next thing John knew Buster was way out in the yard (much farther than he should have been), sniffing around the little tree. Apparently the actual lead completely separated from the clip, and Buster got free. I don't know if he realized what had happened - I'm figuring his thought process went something like this:
"Wow, there are some good smells in the grass tonight! Hey, there's a good smell here, let's check it out. Ooh, I haven't smelled here before for some reason. Let's keep investigating..."
John quickly noticed what was happening, and immediately took off after Buster. I think Mr. Boo finally realized what was going on, and took off toward our neighbor's yard, then immediately onto the patio and up to the door (I'm guessing he followed his usual trail he takes to come back in). Poor dog probably thought he was in a fenced yard again and had free roam.
Yeah...that lead was replaced this weekend.
On Friday we took Judith to John's place of employment for a baby shower. Everyone was beyond thrilled to finally meet our little peanut! John's department had gifts and a cake waiting for us, and his supervisor also had lunch consisting of delicious meatball sandwiches, deli salads, and chips (yum!). Judith was definitely a hit, and everyone wants to know when we'll bring her back again! We topped the day off with bath time for the doggies. They finally smell nice again, and they're actually black & white instead of black & off-white.
Saturday was a long, but very fun day. Judith attended her very first CRHS (Conrail Historical Society) Rail-B-Q. We railfanned our way over to my in-laws' house (we saw a few trains), visited with my mother-in-law, then went to the park for the Rail-B-Q. We saw some good action along the Pittsburgh line, and Judith got to meet John's best friend (and his wife and daughter) along with many of the other members of the group.
Sunday was my first official Mother's Day. I was able to "celebrate" last year with Buster and Lady, but it was different this year with Judith here! I got the necklace I wanted, a card from Judith, and a jade tree from Buster, Lady, & Judith. I am fascinated by the jade tree, but I have no clue how to care for it. Apparently John doesn't either, so some research is in order! It's a cute little plant though.
Anyway, we drove to one of the churches John used to play at and attended services there. It was so nice to go back for a visit, and everyone loved meeting Judith! It's so nice when we can go back for a visit, but we both always end up leaving a little sad because it's such a nice church and the people are really warm and caring. Don't get me wrong - there are tons of people that care about us at our current church. It's really one of those things that you don't realize how much you miss being somewhere until you're not there anymore, and you develop a different appreciation of it.
The rest of Sunday was spent at home - we were originally going to drive from church down to my parents' house to watch the annual Make-A-Wish convoy (it goes right past the house), but my one grandmother got sick and we can't take Judith there until she's better. While I was bummed about missing the convoy, it felt good to be able to just relax at home and spend the remainder of the day with John & Judith. We did have to make a trip to Petsmart and Target for dog food and formula, but thankfully those were quick trips and we could get back home quickly.
Today was a recovery day, one where I attempt to get Judith back on her regular schedule. Naturally she decided to scream like a maniac when I would put her down for longer than 10 seconds (literally, with very few exceptions). Hopefully tomorrow will be better, because she has PT again in the afternoon.
Tuesday, May 3, 2011
5 Months!
Judith, you are 5 months old today, and growing up way too fast for Mommy and Daddy!
Here are some of the big events that happened in the last month:
* You went to church for the first time on April 10th. You met a lot of new people who adore you, and are so impressed at how far you've come!
* You celebrated your first Easter! We took you to your first Maundy Thursday and Easter Vigil services, followed by the Easter Sunday marathon. You and Mommy stayed in the choir room during the sunrise service though - you had to eat and get your medicine/vitamins, and I didn't want to torture you with 3 services (2 was plenty for this year). You got 3 baskets: 1 from Grandma & Grandpa, 1 from Great-Grandma & Great-Grandpa, and 1 from Great-Nana.
* On a different note, you experienced your first severe weather and first excessively humid days.
* You went to your first NICU Developmental/Follow-Up clinic, and impressed us all with how well you're doing!
* You were officially placed into the Early Intervention program, and started physical therapy sessions. Mommy & Daddy are excited for this, because we know it will help you catch up to your actual age!
* Most importantly, you were baptized on May 1, 2011!
Judith's 5 Month Stats
Hair Color: You still have a lot of fuzz, and not a lot of hair, per se. It hasn't changed much in the last month.
Eye Color: Your eyes are slowly changing - they are now a grayish-blue!
Clothing Size: You outgrew your newborn clothes, and are wearing 0-3 month outfits!
Diaper Size: Still size 1, and still a bit big on you. You're definitely growing into them though!
Weight: The last time you were weighed, you were 9 lbs, 7 oz.
Length: Around 21 inches
Feedings: You eat 7 times a day, and get 3.5 oz of NeoSure at each feed.
Developmental Milestones: You smile a lot, and you like to "talk" to us! Your head control improves every day, and we need to get you a Bumbo infant seat so you can practice sitting up. You can roll from your back to tummy, and tummy to back when you actually want to - sometimes you're stubborn for us and won't do it, silly girl! You love to watch different things, love to kick your legs, and you're starting to help us hold your bottle when you eat. We haven't ventured into the land of solids quite yet, but Mommy wants to try some with you soon!
Here are some of the big events that happened in the last month:
* You went to church for the first time on April 10th. You met a lot of new people who adore you, and are so impressed at how far you've come!
* You celebrated your first Easter! We took you to your first Maundy Thursday and Easter Vigil services, followed by the Easter Sunday marathon. You and Mommy stayed in the choir room during the sunrise service though - you had to eat and get your medicine/vitamins, and I didn't want to torture you with 3 services (2 was plenty for this year). You got 3 baskets: 1 from Grandma & Grandpa, 1 from Great-Grandma & Great-Grandpa, and 1 from Great-Nana.
* On a different note, you experienced your first severe weather and first excessively humid days.
* You went to your first NICU Developmental/Follow-Up clinic, and impressed us all with how well you're doing!
* You were officially placed into the Early Intervention program, and started physical therapy sessions. Mommy & Daddy are excited for this, because we know it will help you catch up to your actual age!
* Most importantly, you were baptized on May 1, 2011!
Judith's 5 Month Stats
Hair Color: You still have a lot of fuzz, and not a lot of hair, per se. It hasn't changed much in the last month.
Eye Color: Your eyes are slowly changing - they are now a grayish-blue!
Clothing Size: You outgrew your newborn clothes, and are wearing 0-3 month outfits!
Diaper Size: Still size 1, and still a bit big on you. You're definitely growing into them though!
Weight: The last time you were weighed, you were 9 lbs, 7 oz.
Length: Around 21 inches
Feedings: You eat 7 times a day, and get 3.5 oz of NeoSure at each feed.
Developmental Milestones: You smile a lot, and you like to "talk" to us! Your head control improves every day, and we need to get you a Bumbo infant seat so you can practice sitting up. You can roll from your back to tummy, and tummy to back when you actually want to - sometimes you're stubborn for us and won't do it, silly girl! You love to watch different things, love to kick your legs, and you're starting to help us hold your bottle when you eat. We haven't ventured into the land of solids quite yet, but Mommy wants to try some with you soon!
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