Again, nothing new to report on Eden. She's growing and doing incredibly well. The boys have their ups and downs that stem from getting less attention from us because of her health issues and we're tackling those as they come. But, we've figured out a way people can help.
Money. It's almost embarrassing to ask, but we'll need money to get through this. We live on one income and we're pretty frugal, so we're able to put aside a little bit every month, but not much. We do have some savings that we are fully prepared to drain to take care of her, but if people are willing and able to give to help us, we're not too proud to take it.
We're in the process of setting up an account specifically for her medical bills and expenses that come up because of her medical care. Here's just a few things:
Synegis: She needs this RSV antibody shot once a month during RSV season before she's a year old. That's going to be nine total shots in her first thirteen months of life. The cost of these shots is about $1800 each and as of right now, insurance is not covering them.
Out of pocket medical expenses: our out of pocket for her is $3000 per year. There are still costs on top of that, things we don't even know about yet, so while a lot of things are being covered completely, we still get periodic bills from hospitals, doctors, labs, etc.
Travel expenses: we'll have at least four, possibly more, trips to Dallas during all this. One for her heart catheter procedure and three or four during her hospital stay. Austin is going to stay in Abilene with the boys while Tali is in Dallas with Eden. He'll be in Dallas for a little while at the beginning and then hopefully will be able to come on the weekends to give Tali some relief and in-person support. As much as we can, we'll stay at the Ronald McDonald House and in the hospital, but if necessary, we'd have to stay in a hotel. Also, Ronald McDonald House will let families stay for free but will also accept money. We'd like to pay some to support such an amazing opportunity for families but if we can't, we can't.
Other things: So far, our other expenses have been hand soap (moisturizing antibacterial soap is actually kind of hard to find and not super cheap) and hand sanitizer. We are fortunate enough that I have copious amounts of breast milk and got several cans of formula to add to it for free, but if they want us to continue that indefinitely or increase her fortified bottles, then eventually we'll need to buy formula.
We have more clothes than she can wear multiple times before she outgrows them, we have a freezer full of food (though I will be stocking it up before leaving for a month) and childcare for the boys for the month I'm gone is taken care of. Now that the weather is warm and we're nearly through RSV season, we're getting out more so childcare isn't as big of a thing as it was earlier. I just strap her to my chest and we go to the store or on a walk or wherever we need to go. She seems to enjoy it for the most part.
We have set up a GoFundMe, linked below, to make it simple for people to help us. We've got a goal of $25,000 but we will be happy with anything. That amount should cover everything detailed above and hopefully somethings we didn't think of. Anything "extra" we'll keep in an account for her medical expenses in the years to come. We'll very likely hit our $3000 out of pocket every year with her for quite a while. If we don't, we'll keep it for her for college someday.
There are fees associated with GoFundMe that come out of the amount donated, so if you'd rather give us something directly, that's ok, too.
As always, thank you so much for asking us how she is, for praying for her, for sending her good healing vibes, for whatever you've done for us. We appreciate all of it.
http://www.gofundme.com/rcw2zg
Wednesday, April 8, 2015
Friday, April 3, 2015
Things are going well, so there's been little reason for updates
Welcome to April!
Aside from a huge gust of wind knocking down a tree on the property line between us and the Red Cross, it's been a pretty quiet week, so there's not much to report.
Dr. Sharma got an occimeter (a machine that tests the pulse and oxygen levels in the blood through a little bandage looking thing that wraps around her foot) for us to monitor Eden's pulse ox at home and I went to Regional yesterday, April 2, to get it. They went ahead and weighed her and took her pulse ox and there was good news on both fronts: she'd gained 7 ounces in 9 days (yay! Formula breast milk is great!) and her oxygen levels were still 88, so they hadn't dropped in the two weeks since we'd last had them taken. Dr. Sharma was very happy with her stats and how she's slowly starting to plump up. The boys got so chunky so fast on formula, its a little strange to me to have as small a baby as I do at this stage. But since she's doing great, I'm happy with that.
We're to take her pulse ox every day, once a day, and keep track of it on a log they gave us. We'll take the book to every appointment and on the off two weeks that we don't go, we'll fax it in. So every two weeks the doctors will see her log even if they don't see her physically. We have a scale at home that we're not terribly adept at using, but maybe eventually we'll figure it out and we can weigh her ourselves to track her weight gain.
Still no set dates on anything, which is still frustrating, but I've accepted I can't change that by asking every time we communicate with the doctors. It just irritates them (I'm sure, they've never let on they're irritated, but you know they've got to be mentally rolling their eyes) and doesn't give me any answers.
One thing that's huge is we're pretty sure we've got childcare sorted out. We sat and had a conversation with Mom and Bob last week and they said they'll take the boys while we're both in Dallas. We hadn't even considered asking anyone to take them full time, so their offering was amazing. We said Austin wasn't going to be there the whole time to help the boys have some semblence of normality in their lives and Mom pointed out that I shouldn't be in Dallas for the surgery by myself and that if Austin wasn't going to go, she would. So he and I talked and decided that the pre-surgery and ICU part of the hospital stay, he'll be there. The boys will stay with Mom and Bob and then Austin will come home and take over. We're still hoping they can come visit on the weekends so I can see my boys but if not, we've got Skype (our experience with Facetime is that it doesn't work, plus I don't have it) and phone calls.
During the day, since Mom and Bob shouldn't have to take care of the boys all day every day, we're planning on sending them to the child care at Zion Lutheran. Either Bob's sweet talking or our situation or a combination of both have gotten us spots in their day care program even if its short notice. I've started the process of filling out the paperwork and gathering up the documents for them. It's a great program because it's 6:30am until 6pm and they provide the kids breakfast, lunch, and an afternoon snack, they go outside to play twice a day, weather permitting, and there's a place to leave car seats in case we don't know who will be picking them up. I think there's even a thumb print scanner? I don't know, but it seems pretty great to me. We'll figure out the cost of it later.
The freezer is pretty well full to capacity now, but we're eating through the stuff the boys don't like so that when I'm gone, Austin will have a freezer that's 90% boy friendly food for their dinners. I do have a list that Austin gave me of things that Austin wants/needs to have on hand so I'll be stocking up on various things over the coming weeks to make sure he's good. I'm hoping to get it to a point that he doesn't have to go to the store except for milk, maybe, and he only has to do laundry once a week for the boys.
I've got lists of household items, lists of food for the guys, lists of stuff for me to take with me to Dallas, lists of questions for the doctors, lists of stuff we have to get squared away for day care, lists for just about everything. This makes me feel like I have some control over stuff, even if I don't actually have any control.
As for helping us in some way, there's a couple of things we're thinking about and we'll let you know if they come to anything. I don't want to say anything now in case they don't happen but if they do, I'll post here about them ASAP. For now, thanks so much for the continued prayers and well wishes. Eden is doing great, smiling more and more and its fun when she's alert and looking at us. She's still not terribly interactive, but we'll get there.
Aside from a huge gust of wind knocking down a tree on the property line between us and the Red Cross, it's been a pretty quiet week, so there's not much to report.
Dr. Sharma got an occimeter (a machine that tests the pulse and oxygen levels in the blood through a little bandage looking thing that wraps around her foot) for us to monitor Eden's pulse ox at home and I went to Regional yesterday, April 2, to get it. They went ahead and weighed her and took her pulse ox and there was good news on both fronts: she'd gained 7 ounces in 9 days (yay! Formula breast milk is great!) and her oxygen levels were still 88, so they hadn't dropped in the two weeks since we'd last had them taken. Dr. Sharma was very happy with her stats and how she's slowly starting to plump up. The boys got so chunky so fast on formula, its a little strange to me to have as small a baby as I do at this stage. But since she's doing great, I'm happy with that.
We're to take her pulse ox every day, once a day, and keep track of it on a log they gave us. We'll take the book to every appointment and on the off two weeks that we don't go, we'll fax it in. So every two weeks the doctors will see her log even if they don't see her physically. We have a scale at home that we're not terribly adept at using, but maybe eventually we'll figure it out and we can weigh her ourselves to track her weight gain.
Still no set dates on anything, which is still frustrating, but I've accepted I can't change that by asking every time we communicate with the doctors. It just irritates them (I'm sure, they've never let on they're irritated, but you know they've got to be mentally rolling their eyes) and doesn't give me any answers.
One thing that's huge is we're pretty sure we've got childcare sorted out. We sat and had a conversation with Mom and Bob last week and they said they'll take the boys while we're both in Dallas. We hadn't even considered asking anyone to take them full time, so their offering was amazing. We said Austin wasn't going to be there the whole time to help the boys have some semblence of normality in their lives and Mom pointed out that I shouldn't be in Dallas for the surgery by myself and that if Austin wasn't going to go, she would. So he and I talked and decided that the pre-surgery and ICU part of the hospital stay, he'll be there. The boys will stay with Mom and Bob and then Austin will come home and take over. We're still hoping they can come visit on the weekends so I can see my boys but if not, we've got Skype (our experience with Facetime is that it doesn't work, plus I don't have it) and phone calls.
During the day, since Mom and Bob shouldn't have to take care of the boys all day every day, we're planning on sending them to the child care at Zion Lutheran. Either Bob's sweet talking or our situation or a combination of both have gotten us spots in their day care program even if its short notice. I've started the process of filling out the paperwork and gathering up the documents for them. It's a great program because it's 6:30am until 6pm and they provide the kids breakfast, lunch, and an afternoon snack, they go outside to play twice a day, weather permitting, and there's a place to leave car seats in case we don't know who will be picking them up. I think there's even a thumb print scanner? I don't know, but it seems pretty great to me. We'll figure out the cost of it later.
The freezer is pretty well full to capacity now, but we're eating through the stuff the boys don't like so that when I'm gone, Austin will have a freezer that's 90% boy friendly food for their dinners. I do have a list that Austin gave me of things that Austin wants/needs to have on hand so I'll be stocking up on various things over the coming weeks to make sure he's good. I'm hoping to get it to a point that he doesn't have to go to the store except for milk, maybe, and he only has to do laundry once a week for the boys.
I've got lists of household items, lists of food for the guys, lists of stuff for me to take with me to Dallas, lists of questions for the doctors, lists of stuff we have to get squared away for day care, lists for just about everything. This makes me feel like I have some control over stuff, even if I don't actually have any control.
As for helping us in some way, there's a couple of things we're thinking about and we'll let you know if they come to anything. I don't want to say anything now in case they don't happen but if they do, I'll post here about them ASAP. For now, thanks so much for the continued prayers and well wishes. Eden is doing great, smiling more and more and its fun when she's alert and looking at us. She's still not terribly interactive, but we'll get there.
Happy Easter!
Thursday, March 26, 2015
Quickie
Quick little update:
We talked to the pediatrician about fortifying my breast milk. We had found a human milk enrichment powder sold by Enfamil online for about a dollar a packet and a packet goes into two ounces of milk...so super expensive. She recommended just adding a single scoop of formula powder to 10 ounces of pumped milk and giving that to her one feeding a day to increase Eden's caloric intake. So we started doing that on Wednesday, March 25. She took it really well then, but tonight, Thursday, not so much. Over the last two hours, she's only taken 2.5 ounces of her usual 4 ounces. Unfortunately, we forgot to pour out the evening's serving into a separate bottle so of the 6 left from yesterday, 2 that we could have saved for tomorrow will have to be tossed. This is all a learning experience, so hopefully we'll get the hang of it before too long.
Dr. Sharma told us last week she'd let us know what the plan was in regards to moving things up. It took a few days for her to get the cardiothoracic surgeon, the catheter surgeon, and the other cardiologist together and we finally got an email tonight (around 10.30pm). The current plan is to keep monitoring her oxygen levels, accepting low 80's for the time being. Around 4 or 5 months, we'll do the catheter and schedule the surgery after that. It's still a bit sooner than originally planned, but later than we were thinking last week.
So...still lots of just waiting and monitoring. Which is good and bad. She's doing well enough that she can keep growing and being her sweet, practically perfect little self for a while longer before we have to jump into the world of surgeries and procedures and hospital stays. Unfortunately, not having dates for anything is making the planner part of me insane. I have so much I have to work out, and people want to help with it, but I literally can't do any serious planning without dates. My biggest logistical issue is going to be childcare for the boys and none of that can be worked out yet. So I'm planning what I can: food. I'm bulk cooking and stuffing the freezer as much as I can so Austin will have plenty of food for himself and the boys.
Side note, blogger says I misspelled "cardiothoracic" and I did (I put in an s instead of two c's). When I clicked on it to see the correct spelling, the suggestion was "harpsichordist." So not the same thing.
We talked to the pediatrician about fortifying my breast milk. We had found a human milk enrichment powder sold by Enfamil online for about a dollar a packet and a packet goes into two ounces of milk...so super expensive. She recommended just adding a single scoop of formula powder to 10 ounces of pumped milk and giving that to her one feeding a day to increase Eden's caloric intake. So we started doing that on Wednesday, March 25. She took it really well then, but tonight, Thursday, not so much. Over the last two hours, she's only taken 2.5 ounces of her usual 4 ounces. Unfortunately, we forgot to pour out the evening's serving into a separate bottle so of the 6 left from yesterday, 2 that we could have saved for tomorrow will have to be tossed. This is all a learning experience, so hopefully we'll get the hang of it before too long.
Dr. Sharma told us last week she'd let us know what the plan was in regards to moving things up. It took a few days for her to get the cardiothoracic surgeon, the catheter surgeon, and the other cardiologist together and we finally got an email tonight (around 10.30pm). The current plan is to keep monitoring her oxygen levels, accepting low 80's for the time being. Around 4 or 5 months, we'll do the catheter and schedule the surgery after that. It's still a bit sooner than originally planned, but later than we were thinking last week.
So...still lots of just waiting and monitoring. Which is good and bad. She's doing well enough that she can keep growing and being her sweet, practically perfect little self for a while longer before we have to jump into the world of surgeries and procedures and hospital stays. Unfortunately, not having dates for anything is making the planner part of me insane. I have so much I have to work out, and people want to help with it, but I literally can't do any serious planning without dates. My biggest logistical issue is going to be childcare for the boys and none of that can be worked out yet. So I'm planning what I can: food. I'm bulk cooking and stuffing the freezer as much as I can so Austin will have plenty of food for himself and the boys.
Side note, blogger says I misspelled "cardiothoracic" and I did (I put in an s instead of two c's). When I clicked on it to see the correct spelling, the suggestion was "harpsichordist." So not the same thing.
Sleeping in Daddy's arms is one of her favorite places
Thursday, March 19, 2015
Ticking Along
Short update: Eden had her check up with the cardiologist today. There are two who come from Children's, Dr. Kane and Dr. Sharma. Today we saw Dr. Sharma.
Everything proceeded as usual: she was weighed and measured, her blood pressure, pulse, and oxygen levels were taken, then we were moved into a room for her Echo.
Her oxygen levels are slowly lowering. In the hospital in January, she was consistently around 98 or so. The last time we were there, she was around 95. Today she was at 88. We don't want her to go below 80 but that's the direction we're headed. The cause of this is her pulmonary stenosis: it's actually thickening, which is making it harder for the ventricle to pump the blood through it. It needs to be fixed sooner rather than later but how we fix it could limit our options for her big surgery later on. Since we've pretty well decided that the double switch (biggest, longest, most complicated, riskiest surgery but fixes the most things at a time) is what we're leaning towards, fixing the PS right now isn't really an option.
What does that all mean? It means that instead of waiting until she's six months old, we'll have her heart cath done in the next two months and her open heart surgery much sooner as well, possibly this summer. Dr. Sharma couldn't give us any idea on time frame because she wants to check with the surgeon (who's name I can't recall) and Dr. Kane before passing anything on to us.
We want her to be as big as possible, so there's talk of enriching my breast milk to help her gain weight more quickly. She's gaining well (she's finally out of newborn clothes at 8 weeks old) and everything else is otherwise great. I'm not totally sure what enriching the breast milk entails, if that means I won't nurse her anymore but will pump exclusively and then we'll add something to the milk, if we'll do a mixture of nursing and enriched milk in a bottle or what.
She's been great. No sign of blueness (which would indicate she wasn't getting enough oxygen) or extra fussiness, she's up to 9#4, she smiled at the nurses and Dr. Sharma and was oohed and ahhed over like usual. She's a really great baby. We're just getting ready for whatever the next few months will bring.
Everything proceeded as usual: she was weighed and measured, her blood pressure, pulse, and oxygen levels were taken, then we were moved into a room for her Echo.
Her oxygen levels are slowly lowering. In the hospital in January, she was consistently around 98 or so. The last time we were there, she was around 95. Today she was at 88. We don't want her to go below 80 but that's the direction we're headed. The cause of this is her pulmonary stenosis: it's actually thickening, which is making it harder for the ventricle to pump the blood through it. It needs to be fixed sooner rather than later but how we fix it could limit our options for her big surgery later on. Since we've pretty well decided that the double switch (biggest, longest, most complicated, riskiest surgery but fixes the most things at a time) is what we're leaning towards, fixing the PS right now isn't really an option.
What does that all mean? It means that instead of waiting until she's six months old, we'll have her heart cath done in the next two months and her open heart surgery much sooner as well, possibly this summer. Dr. Sharma couldn't give us any idea on time frame because she wants to check with the surgeon (who's name I can't recall) and Dr. Kane before passing anything on to us.
We want her to be as big as possible, so there's talk of enriching my breast milk to help her gain weight more quickly. She's gaining well (she's finally out of newborn clothes at 8 weeks old) and everything else is otherwise great. I'm not totally sure what enriching the breast milk entails, if that means I won't nurse her anymore but will pump exclusively and then we'll add something to the milk, if we'll do a mixture of nursing and enriched milk in a bottle or what.
She's been great. No sign of blueness (which would indicate she wasn't getting enough oxygen) or extra fussiness, she's up to 9#4, she smiled at the nurses and Dr. Sharma and was oohed and ahhed over like usual. She's a really great baby. We're just getting ready for whatever the next few months will bring.
How could you NOT ooh and ahh at this girl?
Thursday, March 12, 2015
Liquid Gold, among other things
Breastfeeding, at least for me, is the pits. I don't enjoy it terribly and haven't had much success in the past so it seemed like something to just endure because it was expected of me.
With Asher, my milk was little better than water. I think it was a combination of the trauma of his birth and my stress over it not happening as easily as I'd hoped it would, but he was losing weight and I was gaining while breastfeeding. He was 7#4 at birth, 7# at one month and 8# at two months. That's not good. I gained about five pounds in that time frame because of how much I was eating to try to get my supply up, and I was eating pretty healthy, too. So we gave up the exclusivity of breastfeeding around 8 weeks and gave up all together about mid April, when he was about 3.5 months old. I had no trouble weaning him, since I'd barely had anything to begin with. I would try to pump and after 15 minutes on each side I'd have about 1-2 ounces to show for it, if I was lucky.
In spite of that, when Elijah was born, I decided to try again. We were a little more successful and he started gaining appropriately and continued to do so for about 7 weeks. As soon as he stopped gaining, we started supplementing. Austin and I got some kind of food poisoning or something over Thanksgiving (when he was 7 weeks) and I was so sick I couldn't keep anything down for about two days, so obviously very quickly stopped making milk. By the first weekend of December, Elijah was weaned and I was dry with only one day of discomfort. Pumping with him was slightly better: I'd almost always get about 1.5-2 ounces, but never felt like I had the supply to pump regularly.
Eden...now she's a whole different story. It's like my breasts have done the forehead smack saying "Oh! THAT'S what we're for!" Right before she hits her growth spurts, we'll have a night or two that we have trouble filling her up at bedtime, but otherwise, she nurses every 3 hours to satisfaction. I wake up almost every morning with a soggy shirt, having leaked through TWO reusable breast pads and my shirt. One morning Eden, who sleeps right next to me, had a milk stain on her shirt from me from her neck to her naval. The pump I have was purchased at a consignment sale, though it had never been used, and it wasn't the best, but it was something. I pumped with it a couple weeks ago just for some relief when she was sleeping long and I was overly full and got 2 ounces no problem.
Because of Eden's heart, we're getting pretty friendly with the BCBS customer service people and so I called and asked about a breast pump, since there's new legislature about insurance companies being required to cover lactating mothers' supplies. We're in the lucky group that gets one covered 100%, so I went through some hoops to get one. I ordered it Saturday, they confirmed it on Tuesday, I got it Wednesday and used it Thursday morning after Eden nursed a little and went back to sleep, leaving me uncomfortable.
This breast pump is amazing. I got nearly 3 ounces in one session. This is huge for me. I'm hoping to continue to do this so I can store up and save some for those nights when she's not happy and I'm dry. Or for nights I want to go out to eat with friends, or to a movie. Getting to leave the house for more than 2 hours without her would be awesome. Because that's as long as I've been truly away from her since she was born: 2 hours.
I'm working on figuring out a routine for the pumping and storage, figuring out how to do it, when to do it, the best way to do it. We want to give her the best chances we can and feel like for her immune system, that's probably going to be breast milk, since I'll pass on some of my immunities to her.
I absolutely do not have a problem with formula feeding. I did it with both boys and they're great kids in pretty much every way. If I stop providing for her adequately, we've got formula in the pantry to give her. She's had it a few times in her life when I just couldn't provide and we were exhausted and she was starving. Not all moms have success with breastfeeding, just like I didn't the first two times. And some moms rock it, like some moms I know in MOPS who breastfed until their kids were over 2 years old. That's amazing to me. I'll be happy if I can do it past 8 weeks without it damaging my child.
In other news, the kids are all doing great. We went a little stir crazy after nearly two weeks of wintry weather keeping us in nearly every day. Bob was and is awesome about taking the boys to McDonald's to play and leave me alone about once a week.
Asher is still reading and writing his name, he's learning a little bit about patience with his brother (not hitting back immediately, coming to get us when Elijah's doing something he really shouldn't be, etc), learning his address and other typical four year old things.
Elijah is slowly learning to calm down when he's angry instead of throwing things. That's something that's going to take a while, I think. I've started taking him to his room and his bed when he starts to throw a tantrum and I think it's starting to slowly kick in. Today I forgot about him in time out for about ten minutes and when I came back he was sleeping.
Eden is doing fabulously, growing and gaining weight appropriately. She's in a weird position where the newborn clothes are too small and the 0-3 month clothes are too big. So her onesies and sleepers are a little baggy. Newborn outfits still fit so she's still adorable when we go places. Asher loves to pick out headbands with bows and put them on her. Every time he says she looks like a princess.
On one of the last icy days, Austin crashed his car a little and while it's still driveable, it wasn't street legal. We're still waiting to find out what's going on there. He's also gotten some kind of extra responsibilities at work that are exciting. Training customers on their products? He's the one to ask about it.
My world is mostly kids. Keeping the boys from killing each other or themselves, feeding and keeping Eden content. Some cooking and cleaning happens, but not tons since we still have a freezer full of food and a housekeeper who comes once a week (that's the best, Mom is so great to do that for us). We're slowly starting to get out of the house more since the weather is nicer. We go play at the playgrounds nearby, we go to friends' houses, we go to church, tonight we went to Artwalk. I'm getting better at babywearing (I think) and I feel like I have a pretty good handle on life with three kids. Though once the housekeeper quits coming I may change my tune.
All in all, life is good around here. Everyone is happy (most of the time) and healthy and (usually) doing what they're supposed to be.
With Asher, my milk was little better than water. I think it was a combination of the trauma of his birth and my stress over it not happening as easily as I'd hoped it would, but he was losing weight and I was gaining while breastfeeding. He was 7#4 at birth, 7# at one month and 8# at two months. That's not good. I gained about five pounds in that time frame because of how much I was eating to try to get my supply up, and I was eating pretty healthy, too. So we gave up the exclusivity of breastfeeding around 8 weeks and gave up all together about mid April, when he was about 3.5 months old. I had no trouble weaning him, since I'd barely had anything to begin with. I would try to pump and after 15 minutes on each side I'd have about 1-2 ounces to show for it, if I was lucky.
In spite of that, when Elijah was born, I decided to try again. We were a little more successful and he started gaining appropriately and continued to do so for about 7 weeks. As soon as he stopped gaining, we started supplementing. Austin and I got some kind of food poisoning or something over Thanksgiving (when he was 7 weeks) and I was so sick I couldn't keep anything down for about two days, so obviously very quickly stopped making milk. By the first weekend of December, Elijah was weaned and I was dry with only one day of discomfort. Pumping with him was slightly better: I'd almost always get about 1.5-2 ounces, but never felt like I had the supply to pump regularly.
Eden...now she's a whole different story. It's like my breasts have done the forehead smack saying "Oh! THAT'S what we're for!" Right before she hits her growth spurts, we'll have a night or two that we have trouble filling her up at bedtime, but otherwise, she nurses every 3 hours to satisfaction. I wake up almost every morning with a soggy shirt, having leaked through TWO reusable breast pads and my shirt. One morning Eden, who sleeps right next to me, had a milk stain on her shirt from me from her neck to her naval. The pump I have was purchased at a consignment sale, though it had never been used, and it wasn't the best, but it was something. I pumped with it a couple weeks ago just for some relief when she was sleeping long and I was overly full and got 2 ounces no problem.
Because of Eden's heart, we're getting pretty friendly with the BCBS customer service people and so I called and asked about a breast pump, since there's new legislature about insurance companies being required to cover lactating mothers' supplies. We're in the lucky group that gets one covered 100%, so I went through some hoops to get one. I ordered it Saturday, they confirmed it on Tuesday, I got it Wednesday and used it Thursday morning after Eden nursed a little and went back to sleep, leaving me uncomfortable.
This breast pump is amazing. I got nearly 3 ounces in one session. This is huge for me. I'm hoping to continue to do this so I can store up and save some for those nights when she's not happy and I'm dry. Or for nights I want to go out to eat with friends, or to a movie. Getting to leave the house for more than 2 hours without her would be awesome. Because that's as long as I've been truly away from her since she was born: 2 hours.
I'm working on figuring out a routine for the pumping and storage, figuring out how to do it, when to do it, the best way to do it. We want to give her the best chances we can and feel like for her immune system, that's probably going to be breast milk, since I'll pass on some of my immunities to her.
I absolutely do not have a problem with formula feeding. I did it with both boys and they're great kids in pretty much every way. If I stop providing for her adequately, we've got formula in the pantry to give her. She's had it a few times in her life when I just couldn't provide and we were exhausted and she was starving. Not all moms have success with breastfeeding, just like I didn't the first two times. And some moms rock it, like some moms I know in MOPS who breastfed until their kids were over 2 years old. That's amazing to me. I'll be happy if I can do it past 8 weeks without it damaging my child.
In other news, the kids are all doing great. We went a little stir crazy after nearly two weeks of wintry weather keeping us in nearly every day. Bob was and is awesome about taking the boys to McDonald's to play and leave me alone about once a week.
Asher is still reading and writing his name, he's learning a little bit about patience with his brother (not hitting back immediately, coming to get us when Elijah's doing something he really shouldn't be, etc), learning his address and other typical four year old things.
Elijah is slowly learning to calm down when he's angry instead of throwing things. That's something that's going to take a while, I think. I've started taking him to his room and his bed when he starts to throw a tantrum and I think it's starting to slowly kick in. Today I forgot about him in time out for about ten minutes and when I came back he was sleeping.
Eden is doing fabulously, growing and gaining weight appropriately. She's in a weird position where the newborn clothes are too small and the 0-3 month clothes are too big. So her onesies and sleepers are a little baggy. Newborn outfits still fit so she's still adorable when we go places. Asher loves to pick out headbands with bows and put them on her. Every time he says she looks like a princess.
On one of the last icy days, Austin crashed his car a little and while it's still driveable, it wasn't street legal. We're still waiting to find out what's going on there. He's also gotten some kind of extra responsibilities at work that are exciting. Training customers on their products? He's the one to ask about it.
My world is mostly kids. Keeping the boys from killing each other or themselves, feeding and keeping Eden content. Some cooking and cleaning happens, but not tons since we still have a freezer full of food and a housekeeper who comes once a week (that's the best, Mom is so great to do that for us). We're slowly starting to get out of the house more since the weather is nicer. We go play at the playgrounds nearby, we go to friends' houses, we go to church, tonight we went to Artwalk. I'm getting better at babywearing (I think) and I feel like I have a pretty good handle on life with three kids. Though once the housekeeper quits coming I may change my tune.
All in all, life is good around here. Everyone is happy (most of the time) and healthy and (usually) doing what they're supposed to be.
Breastmilk under a microscope: there's a reason it's called liquid gold. http://thestir.cafemom.com/parenting_news/183631/mom_puts_breast_milk_under
Brelfies were a thing for a while. It's nothing to be ashamed of so here's mine.
Content child after a nursing session.
If we wanted to be sneaky about where we play, Asher didn't get the memo.
Elijah being Elijah: falling asleep with his hand in the pretzel bag while watching Thomas.
Our very own liquid gold.
Tuesday, March 3, 2015
Mommy Guilt
Mommy Guilt: it's a real thing. Any mom who doesn't feel bad about something in relation to her children is either lying or hasn't been a mom long enough. I feel mommy guilt for different things in regards to all my kids.
For all three of them, I feel bad that I don't have more patience and creativity. I really don't enjoy doing craft projects that are geared towards littles, I don't want to deal with the mess, I don't have the supplies, so we don't do anything crafty around the house beyond coloring. Luckily, FKO is great about doing craft projects and sending them home so I still get the hand print turkeys and thumbprint hearts and whatever else they do so I can remember how small their hands were. I get tired and lose my patience quickly at times and then there's yelling and tears and slamming of doors. It can get ugly.
With Asher, I sometimes feel guilty he didn't have a longer time of being an only child. I was so tired and big during the last half of my pregnancy with Elijah, the few things I HAD been doing with him I wasn't anymore. He doesn't remember before Elijah was born, and that was part of our reason for having them closer together, but we seriously thought it would take a couple of months to get pregnant instead of the two weeks it took.
I definitely feel guilty that we're not able to help him with school stuff yet. He's so smart and reads so well, I think he's definitely ready for some kind of school situation beyond FKO but the headstart programs and public school pre-schools are all for at-risk children and he doesn't fit any of the criteria. He's eligible for a private school pre-school, but we can't afford that. So, I tell myself he'll have so many years of school ahead of him, it's ok for him to just go to FKO and be a kid for another year and a half until he's old enough for AISD's kindergarten.
With Elijah, I occasionally feel guilty for making him a middle child. I don't regret Eden at all, but Elijah has recently been acting out more and that's because he's old enough to understand he's getting less attention but not to really fully get why. He loves his sister, he just resents her presence. It's confusing for him so he acts out. Daily temper tantrums are exhausting for me and not great for him. I regret that I don't have more time to spend with him. I would do mommy-son dates with him, but he's so young, there's not much we could do. He likes to go to the park, but wants his brother there and I can't get up on the equipment to play with him. I plan to try to do something one-on-one with both boys as they get old enough to appreciate it and I hope that in the meantime, Elijah's personality and behavior don't get irrevocably worse. If they do, add that to the pile of mommy guilt.
For both boys, I feel guilty that I wasn't able to breast feed them properly. Asher was the worst of the two, but neither made it past 8 weeks of breastfeeding. I hated it, my supply was terrible, and it was frustrating for everyone involved. Switching to formula was great, but I still feel bad that I wasn't able to provide adequately for my babies. I'm so paranoid that history will repeat itself with Eden I welcome the frequent check ups for her heart because that means her weight is checked on a regular basis by medical professionals. We'll know almost immediately if something changes and can take appropriate actions. And if that happens, I'll do it...and feel guilty about it.
With Eden...well. In the hospital, I said I didn't feel bad or take personal responsibility for her heart because it's a fluke thing. Recently, though, we've learned something that's changed that for me.
My morning sickness is awful. Like, can't hardly function horrible. And my mom was getting married right at the end of my first trimester. I took to the MOPS facebook group and asked for help to get through the wedding weekend. A couple of moms recommended Zofran, an anti-nausea medication they'd taken during their pregnancies that their doctors had prescribed. I asked Mom about it, she looked into it and agreed it sounded like a good idea. I got some and took a few pills over the wedding weekend. It was amazing. It started to work almost immediately and gave me eight nausea free hours at a time. I didn't take it for too long, wanting to just use it to get through the wedding.
We found out last weekend that Zofran is the subject of a class action lawsuit over the fact that taking it during pregnancy can cause heart defects. Namely, four of the five that Eden has.
Now, we have no idea if those few days of Zofran are why she has holes in her heart or not. The swapped ventricles is not one of the things Zofran causes, so it's possible several of the other things were occurring anyway and the Zofran did nothing. It's also possible that the Zofran caused them and in a round about way saved her life (how messed up is THAT?) I haven't talked to her doctors about it yet but plan to at her next appointment.
But do you see what that all means? Because I was so sick, I took medicine that may or may not have seriously harmed my child and changed her life from something normal and routine to something scary and special. Without having the ability to know for sure, how could I NOT feel guilty and partially (or totally) responsible for her heart problems? Working in favor of it not all being my fault is the fact that several of her defects typically happen together, but still.
At the end of the day, all moms have some element of guilt. We feel bad that we're tired, we don't have the time we'd like, the patience we need, we don't take as much joy in our children as we feel like we should as often as we're told to. We have long days or hours with our children and sometimes want to run away or lock them in a closet but then later realize that they're just being kids and they have bad days, too. We moms just need to accept that some days are worse than other and try to do the best we can. Hopefully our kids will remember our love and that we at least tried to be the best moms we could more than they'll remember the yelling and screaming and door slamming.
We moms need to support each other, in spite of our different choices in child rearing. We need to cheer each other on, encourage and comfort one another through these messy, trying times. Its great to have someone to celebrate the little victories with, like FINALLY potty training a kid, or getting the picky eater to try something green.
Amy Poehler wrote in her book that she has a philosophy about life that I have adopted for myself in the Mommy Wars: Good for her, not for me. You want to make your own baby food? Good for you, not for me. You want to do cloth diapers? You want to eat only organic foods? You want to use pain medications and have your baby in the hospital? Good for you, not for me.
So end the Mommy Wars, which lead to the Mommy Guilt. Support and love each other and this parenting thing won't be so hard.
For all three of them, I feel bad that I don't have more patience and creativity. I really don't enjoy doing craft projects that are geared towards littles, I don't want to deal with the mess, I don't have the supplies, so we don't do anything crafty around the house beyond coloring. Luckily, FKO is great about doing craft projects and sending them home so I still get the hand print turkeys and thumbprint hearts and whatever else they do so I can remember how small their hands were. I get tired and lose my patience quickly at times and then there's yelling and tears and slamming of doors. It can get ugly.
With Asher, I sometimes feel guilty he didn't have a longer time of being an only child. I was so tired and big during the last half of my pregnancy with Elijah, the few things I HAD been doing with him I wasn't anymore. He doesn't remember before Elijah was born, and that was part of our reason for having them closer together, but we seriously thought it would take a couple of months to get pregnant instead of the two weeks it took.
I definitely feel guilty that we're not able to help him with school stuff yet. He's so smart and reads so well, I think he's definitely ready for some kind of school situation beyond FKO but the headstart programs and public school pre-schools are all for at-risk children and he doesn't fit any of the criteria. He's eligible for a private school pre-school, but we can't afford that. So, I tell myself he'll have so many years of school ahead of him, it's ok for him to just go to FKO and be a kid for another year and a half until he's old enough for AISD's kindergarten.
With Elijah, I occasionally feel guilty for making him a middle child. I don't regret Eden at all, but Elijah has recently been acting out more and that's because he's old enough to understand he's getting less attention but not to really fully get why. He loves his sister, he just resents her presence. It's confusing for him so he acts out. Daily temper tantrums are exhausting for me and not great for him. I regret that I don't have more time to spend with him. I would do mommy-son dates with him, but he's so young, there's not much we could do. He likes to go to the park, but wants his brother there and I can't get up on the equipment to play with him. I plan to try to do something one-on-one with both boys as they get old enough to appreciate it and I hope that in the meantime, Elijah's personality and behavior don't get irrevocably worse. If they do, add that to the pile of mommy guilt.
For both boys, I feel guilty that I wasn't able to breast feed them properly. Asher was the worst of the two, but neither made it past 8 weeks of breastfeeding. I hated it, my supply was terrible, and it was frustrating for everyone involved. Switching to formula was great, but I still feel bad that I wasn't able to provide adequately for my babies. I'm so paranoid that history will repeat itself with Eden I welcome the frequent check ups for her heart because that means her weight is checked on a regular basis by medical professionals. We'll know almost immediately if something changes and can take appropriate actions. And if that happens, I'll do it...and feel guilty about it.
With Eden...well. In the hospital, I said I didn't feel bad or take personal responsibility for her heart because it's a fluke thing. Recently, though, we've learned something that's changed that for me.
My morning sickness is awful. Like, can't hardly function horrible. And my mom was getting married right at the end of my first trimester. I took to the MOPS facebook group and asked for help to get through the wedding weekend. A couple of moms recommended Zofran, an anti-nausea medication they'd taken during their pregnancies that their doctors had prescribed. I asked Mom about it, she looked into it and agreed it sounded like a good idea. I got some and took a few pills over the wedding weekend. It was amazing. It started to work almost immediately and gave me eight nausea free hours at a time. I didn't take it for too long, wanting to just use it to get through the wedding.
We found out last weekend that Zofran is the subject of a class action lawsuit over the fact that taking it during pregnancy can cause heart defects. Namely, four of the five that Eden has.
Now, we have no idea if those few days of Zofran are why she has holes in her heart or not. The swapped ventricles is not one of the things Zofran causes, so it's possible several of the other things were occurring anyway and the Zofran did nothing. It's also possible that the Zofran caused them and in a round about way saved her life (how messed up is THAT?) I haven't talked to her doctors about it yet but plan to at her next appointment.
But do you see what that all means? Because I was so sick, I took medicine that may or may not have seriously harmed my child and changed her life from something normal and routine to something scary and special. Without having the ability to know for sure, how could I NOT feel guilty and partially (or totally) responsible for her heart problems? Working in favor of it not all being my fault is the fact that several of her defects typically happen together, but still.
At the end of the day, all moms have some element of guilt. We feel bad that we're tired, we don't have the time we'd like, the patience we need, we don't take as much joy in our children as we feel like we should as often as we're told to. We have long days or hours with our children and sometimes want to run away or lock them in a closet but then later realize that they're just being kids and they have bad days, too. We moms just need to accept that some days are worse than other and try to do the best we can. Hopefully our kids will remember our love and that we at least tried to be the best moms we could more than they'll remember the yelling and screaming and door slamming.
We moms need to support each other, in spite of our different choices in child rearing. We need to cheer each other on, encourage and comfort one another through these messy, trying times. Its great to have someone to celebrate the little victories with, like FINALLY potty training a kid, or getting the picky eater to try something green.
Amy Poehler wrote in her book that she has a philosophy about life that I have adopted for myself in the Mommy Wars: Good for her, not for me. You want to make your own baby food? Good for you, not for me. You want to do cloth diapers? You want to eat only organic foods? You want to use pain medications and have your baby in the hospital? Good for you, not for me.
So end the Mommy Wars, which lead to the Mommy Guilt. Support and love each other and this parenting thing won't be so hard.
Friday, February 20, 2015
Eden Update
I haven't posted about Eden for several days because there's not been anything to report, which is good. She's eating well, growing well, doing everything as she should.
At her two week check up, I asked about her droopy left eyelid. We all figured it was somehow related to her birth since after she was born she got some blood in her eye. It turns out it's very likely she has ptosis, a congenital condition where the muscles in the eyelid aren't as strong and the eyelid droops. It can affect how her vision develops and unfortunately there's not a way to fix it non-surgically. But from what we found online, typically children live with it until they're about 3 or 4. Plus, no way would doctors want to fix her eyelid before her heart. We at first had an appointment to see an ophthalmologist but then decided to put it off a couple of months just to give me a break and to be able to see the pediatric specialist in town.
A couple days later, she had her first appointment with the Children's cardiologist but due to weather somewhere, his flight out of DFW was cancelled so he didn't make it. They still took her vitals and checked her out before sending us home. She was great, everything well within normal ranges. She had also regained her birth weight. It was just frustrating to go all the way to Regional, wait for 30 minutes and then find out that the doctor wasn't there.
Luckily, he was there yesterday. We again checked her vitals and everything was in the normal range, then we went for another echo. I'm not sure for a fact, but I suspect they'll probably do an echo every time we see Dr. Kane. This one wasn't nearly as long as the others, since they know what's there now and are just checking to make sure nothing new has developed. She was fussy and crying at first but then I climbed up on the table and held her and she calmed down and watched the tech do his thing.
Dr. Kane seemed to think she was doing well enough that we don't actually need to see him every time he visits, just every other time. That means only one doctor visit a month instead of two, which is nice. Obviously, if we feel like she needs to be seen or we have questions or something for him, we can. Our first go-to will be the pediatrician and then him. He took the time to reexplain her conditions to us, which was nice. I'd apparently missed it that there's two holes in her heart: the VSD between the ventricles and an ASD between the atria (upper chambers). Austin didn't remember it either but it is on our paperwork from Dallas, so who knows.
He explained that if she starts to get worse, it most likely won't be a sudden thing but a more gradual decline, so we'll notice it and he'll be able to spot it in his monthly checks. If she does get sick with something that warrants hospitalization, we'll go to Dallas for that, not here. So fingers crossed she doesn't have to be hospitalized. Neither of the boys were before 1 so I'm hopeful she'll follow in their footsteps.
Around six months old, we will go to Dallas for an overnight stay for them to run a catheter into her heart to essentially map it. They need to know what it looks like with more clarity than an echo will give them. They'll use some kind of dye and map it out and then schedule her surgery. So we're looking at a trip back to the metroplex sometime around August or September and her surgery sometime (probably) shortly after that.
We asked about waiting until she's 3 or 4 to do her surgery just to give her time to grow and he said there's really no reason to do that. Her heart won't get that much bigger between 1 and 3 and it'll weaken over time so they may as well go ahead and do it as soon as she's big enough. However, the main surgeon may decide otherwise and wait until she's 18 months. There's really no telling until we're there.
As for the surgery, there's actually at least three different types they could do. The more complicated the surgery, the more likely it is to be successful for a longer time but it'll also have more risks. There's two kinds of double switch, one of which involves putting in a temporary valve type thing to bypass the pulmonary stenosis. That would need to be replaced later in life because it doesn't grow with her. The other type of double switch would involve a later operation using a catheter to widen the stenosis as it is now. Another option for surgery is to just close the holes and to kind of see how the arteries do. It would increase the possibilities that she'd need a heart transplant later in life while the double switch would not. All that said and done, there's a possibility that she'll need a pacemaker at some point in her life.
We asked about the odds/possibility of any future children having some kind of heart issues (not that we're planning more, but hey, I wasn't planned either). He said that the odds of anyone having a baby with a heart issue are less than 1% but that a second child with heart issues the odds increase a bit, maybe to as much as 2%. It's still a very small chance, but greater than it was before. Her odds of having a child with a heart defect are also slightly elevated but not huge.
We asked about traveling and going places in town and he said that we really just need to use our best judgement. Go to church but don't leave her in the nursery or pass her around. Go to MOPS but same rules. Probably don't go to the grocery store or shopping or out to eat with her. Traveling is ok, but just be aware of what's going on with her and around us. He pointed out that she's not as fragile as we were thinking, she's a fairly normal baby with just a special heart.
I came away from that feeling pretty good about things. She's good, we're all good, we can return to a somewhat normal state of life.
BCBS mailed a letter to the pediatrician and us stating that they're not going to pay for her antibody shots to protect her from RSV. We think they maybe didn't really look at her file because it says she's not covered because she wasn't born before 29 weeks and doesn't have congenital heart disease. Pretty sure holes in her heart and switched ventricles count as CHD. We've got a great ped in that when I called her office Monday to see if I needed to do anything about it I was told they'd already sent in an appeal. She's due for her next shot after March 1 and they've got some in stock so we'll be ok until April at the very least, and that would be the last month she'd need it for now. We think she'll probably have to have a couple at least next RSV season but we'll cross that bridge when we come to it.
We also got our first bill from the hospital stay. Yikes. Luckily we talked to the insurance company and we've hit both our deductible and our out of pocket, so from now on, everything for her that's in network is free to us. Yay! We at first were thinking we'd have to pay 20% or so of everything after hitting the out of pocket and I was panicking a little since we just don't have that kind of money. But I'll gladly pay the $3000 that's our out of pocket every year to take care of her.
All said and done, I personally feel a lot better about what's going on with our family. Eden is very much like a regular newborn, the only way her heart affects us is we make sure to wash our hands more often and we're more careful about letting the boys be around her and what of her they touch since they're not great at washing their hands. We now know that we'll have $3000 every year for probably the rest of her life that we need to add into our budget. We know that her life is safer than we thought before. She's currently sleeping beside me, alternately snoring softly and waving her arms around. She whimpers in her sleep, she wriggles in her sleep, she snuggles closer to the warm body she inevitably sleeps against. All normal baby things. And I wouldn't have it any other way.
At her two week check up, I asked about her droopy left eyelid. We all figured it was somehow related to her birth since after she was born she got some blood in her eye. It turns out it's very likely she has ptosis, a congenital condition where the muscles in the eyelid aren't as strong and the eyelid droops. It can affect how her vision develops and unfortunately there's not a way to fix it non-surgically. But from what we found online, typically children live with it until they're about 3 or 4. Plus, no way would doctors want to fix her eyelid before her heart. We at first had an appointment to see an ophthalmologist but then decided to put it off a couple of months just to give me a break and to be able to see the pediatric specialist in town.
A couple days later, she had her first appointment with the Children's cardiologist but due to weather somewhere, his flight out of DFW was cancelled so he didn't make it. They still took her vitals and checked her out before sending us home. She was great, everything well within normal ranges. She had also regained her birth weight. It was just frustrating to go all the way to Regional, wait for 30 minutes and then find out that the doctor wasn't there.
Luckily, he was there yesterday. We again checked her vitals and everything was in the normal range, then we went for another echo. I'm not sure for a fact, but I suspect they'll probably do an echo every time we see Dr. Kane. This one wasn't nearly as long as the others, since they know what's there now and are just checking to make sure nothing new has developed. She was fussy and crying at first but then I climbed up on the table and held her and she calmed down and watched the tech do his thing.
Dr. Kane seemed to think she was doing well enough that we don't actually need to see him every time he visits, just every other time. That means only one doctor visit a month instead of two, which is nice. Obviously, if we feel like she needs to be seen or we have questions or something for him, we can. Our first go-to will be the pediatrician and then him. He took the time to reexplain her conditions to us, which was nice. I'd apparently missed it that there's two holes in her heart: the VSD between the ventricles and an ASD between the atria (upper chambers). Austin didn't remember it either but it is on our paperwork from Dallas, so who knows.
He explained that if she starts to get worse, it most likely won't be a sudden thing but a more gradual decline, so we'll notice it and he'll be able to spot it in his monthly checks. If she does get sick with something that warrants hospitalization, we'll go to Dallas for that, not here. So fingers crossed she doesn't have to be hospitalized. Neither of the boys were before 1 so I'm hopeful she'll follow in their footsteps.
Around six months old, we will go to Dallas for an overnight stay for them to run a catheter into her heart to essentially map it. They need to know what it looks like with more clarity than an echo will give them. They'll use some kind of dye and map it out and then schedule her surgery. So we're looking at a trip back to the metroplex sometime around August or September and her surgery sometime (probably) shortly after that.
We asked about waiting until she's 3 or 4 to do her surgery just to give her time to grow and he said there's really no reason to do that. Her heart won't get that much bigger between 1 and 3 and it'll weaken over time so they may as well go ahead and do it as soon as she's big enough. However, the main surgeon may decide otherwise and wait until she's 18 months. There's really no telling until we're there.
As for the surgery, there's actually at least three different types they could do. The more complicated the surgery, the more likely it is to be successful for a longer time but it'll also have more risks. There's two kinds of double switch, one of which involves putting in a temporary valve type thing to bypass the pulmonary stenosis. That would need to be replaced later in life because it doesn't grow with her. The other type of double switch would involve a later operation using a catheter to widen the stenosis as it is now. Another option for surgery is to just close the holes and to kind of see how the arteries do. It would increase the possibilities that she'd need a heart transplant later in life while the double switch would not. All that said and done, there's a possibility that she'll need a pacemaker at some point in her life.
We asked about the odds/possibility of any future children having some kind of heart issues (not that we're planning more, but hey, I wasn't planned either). He said that the odds of anyone having a baby with a heart issue are less than 1% but that a second child with heart issues the odds increase a bit, maybe to as much as 2%. It's still a very small chance, but greater than it was before. Her odds of having a child with a heart defect are also slightly elevated but not huge.
We asked about traveling and going places in town and he said that we really just need to use our best judgement. Go to church but don't leave her in the nursery or pass her around. Go to MOPS but same rules. Probably don't go to the grocery store or shopping or out to eat with her. Traveling is ok, but just be aware of what's going on with her and around us. He pointed out that she's not as fragile as we were thinking, she's a fairly normal baby with just a special heart.
I came away from that feeling pretty good about things. She's good, we're all good, we can return to a somewhat normal state of life.
BCBS mailed a letter to the pediatrician and us stating that they're not going to pay for her antibody shots to protect her from RSV. We think they maybe didn't really look at her file because it says she's not covered because she wasn't born before 29 weeks and doesn't have congenital heart disease. Pretty sure holes in her heart and switched ventricles count as CHD. We've got a great ped in that when I called her office Monday to see if I needed to do anything about it I was told they'd already sent in an appeal. She's due for her next shot after March 1 and they've got some in stock so we'll be ok until April at the very least, and that would be the last month she'd need it for now. We think she'll probably have to have a couple at least next RSV season but we'll cross that bridge when we come to it.
We also got our first bill from the hospital stay. Yikes. Luckily we talked to the insurance company and we've hit both our deductible and our out of pocket, so from now on, everything for her that's in network is free to us. Yay! We at first were thinking we'd have to pay 20% or so of everything after hitting the out of pocket and I was panicking a little since we just don't have that kind of money. But I'll gladly pay the $3000 that's our out of pocket every year to take care of her.
All said and done, I personally feel a lot better about what's going on with our family. Eden is very much like a regular newborn, the only way her heart affects us is we make sure to wash our hands more often and we're more careful about letting the boys be around her and what of her they touch since they're not great at washing their hands. We now know that we'll have $3000 every year for probably the rest of her life that we need to add into our budget. We know that her life is safer than we thought before. She's currently sleeping beside me, alternately snoring softly and waving her arms around. She whimpers in her sleep, she wriggles in her sleep, she snuggles closer to the warm body she inevitably sleeps against. All normal baby things. And I wouldn't have it any other way.
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