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.

Sleeping in Daddy's arms is one of her favorite places

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.

How could you NOT ooh and ahh at this girl? 

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.

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.

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.

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. 

Lend a Helping Hand

I'm not good about asking for help for myself. I am slightly better at asking for help for my kids, but not by much. It's not pride or self-consciousness, it's a weird "well, they're probably too busy, I might as well do it myself." I have had a little bit of experience of no one even offering when I sort of needed it, so when I really need it, a part of me feels like it'll be a repeat of before. (Yeah, that's confusing but I don't want to call people out with specific situations so you get a vague intro.) As the news about Eden is making the rounds, though, everyone wants to help and that is so great. I really do appreciate the offers, though at this time I really have no idea what to tell you.

The main things needed with a newborn are meals, cleanliness, and time. Meals, I've got covered. My freezer and pantry are really full from my stocking up before she was born. Not to say we don't appreciate someone bringing us food, that's a freezer or pantry meal we can eat later. Plus I've definitely hit the "ugh, I don't want to eat any of this" so other people's cooking or take out is definitely welcome.

Cleanliness...well, we all know I'm not the best housekeeper, so my mom is helping out in that area and her housekeeper is going to start coming once a week starting Monday. My only issue with that is getting out of her way while she cleans. Its a good problem to have. She's cleaned for us before and she always does the master bedroom first so we can hole up in there and watch tv or read books while she hits the rest of the house.

Time is the biggest one and the hardest one to fill. I love my kids but I need time away from them to be a better parent. I'm exhausted just from having a newborn, not to mention the emotional toll her diagnoses have taken on me so the days that I don't have all three kids are precious to me. They're also the days we have doctors appointments so I don't get to nap much. I doze a little, wrapped around her body while she nurses and the boys leg wrestle on the bed and watch Thomas movies on Netflix. That's not terribly restful, but I'll take what I can get.

What would be great, but what I also understand is really hard for people to do, is for someone to take the boys or sit with Eden while I go somewhere with them for a bit. Or come hang out for a bit so I can have some adult contact that's not my family. Or sit with all three kids while I get away. Austin's good about this in the evenings, but its during the day that I feel most isolated. Not being able to go to playdates or MOPS or the grocery store is a bit stifling. Yes, I realize I don't get out a ton, but I do get out some with the boys during the week. And now that's not happening. I'm constantly tethered to a child in some way and if that's how it has to be for three months...well, we'll figure out a way to make that work without someone getting hurt.

Overall, we're doing ok. Eden is thriving, the boys are doting, and Austin and I are slowly starting to find our rhythm with three kids, me especially. We have our first visit with the cardiologist tomorrow and will hopefully get a little more information on what the future months are going to look like.

At the end of the day, though, we are appreciative of everything people are doing for us, even if it's just praying (which isn't really a "just"). Once we know more of what we need, we'll let people know, I promise. Right now, just keep doing whatever it is you're doing.

Broken Hearted

No parent wants their child to have so much as the sniffles, so imagine the frisson of alarm that went through me on Monday when I was told my perfect, pink, newborn daughter had a "significant heart murmur." Let's start from the beginning....

As you know, Eden was born at home on purpose. There were a few issues with her breathing at the very beginning, but we all assumed it was due to the suddenness of her birth. After we got her breathing well, she was pink and perfect and showed no signs of distress or illness of any kind. Which we expected. She was a perfectly normal baby.

Since she was born at home, we had to take her to the pediatrician to get her newborn vaccinations and order the blood type test (I'm RH negative but that's a whole other story), which we did Monday afternoon. She got her PKU and her shots and while the doctor was doing her routine check, she noticed the murmur. She immediately decided that we needed an echocardiogram, or ECG. Very basically, that's an ultrasound of the chest. She didn't think it was any kind of emergency, so we simply called Abilene Regional and scheduled it for Thursday morning.

We went home and started researching online what exactly an ECG is, what heart murmurs are likely in newborns, and what the outcome could be. I was actually fairly comforted by what I found, especially after my mom said it was probably a PDA, patent ductus arteriosus. It's essentially a little bridge between the pulmonary artery and the aorta that is present in the womb and closes very soon after birth. Asher had a tiny murmur at 2 weeks that was gone at 2 months that very likely was something like that that self corrected. So we figured that was probably it.

Thursday we dropped the boys off a little early (Kathy McFall is the best) and headed to Regional. We checked in and began the first of what was to be many waits. Around 9.30 we were called back to fill out paperwork, then went to wait again for the ECG.

The two techs who did the test actually knew Dad, so that was pretty cool. Mom had told us it would probably take about a half hour, so when we hit the 60 minute mark of them rubbing a little wand around on my newborn's chest, I felt that tingle of "something's not right." Plus I heard the phrase "pulmonary artery bifurcation" which means the pulmonary artery is split. Not good. Occasionally they'd do a color scan and you could see red and blue stuff pulsing along with her heart beat and they were mixing. Also probably not good. At about the 30 minute mark they got a doctor in to look at the scans and he spent another 30 minutes looking. Of course, no one tells you anything, but one tech did leave in order to send some scans to another doctor somewhere to be evaluated.

After the scan, around 11am, we were escorted to a small exam room where they took her blood pressure on all her limbs and told us to wait. Which we did. I nursed, Eden pooped, we both napped. Around 12.30, I realized I hadn't eaten since 8am and was starving, so I went to Subway across the street to get some food for us. The doctor looking at scans elsewhere was getting a third opinion and we had no idea how long it would take for anyone to decide to say anything.

While I was gone, Austin talked to the second doctor, Dr. Dyer at Children's Medical Hospital in Dallas. Basically, his understanding was that there was something wrong and we needed to go to Dallas for observation. Her heart was twisted. What that meant, we had no idea. Mom was confused by our fumbling words since they didn't make sense.

We headed towards home with no clue what was going on. We got a call from Children's telling us to come that night and to pack for a few days. Now we were really freaked out.

We met Mom and Bob at the house around 1 and proceeded to pack blindly, throwing clothing and miscellaneous stuff into bags and bags into cars. For the boys, rather than attempt to pack a suitcase, we just sent the laundry hamper full of clean clothes with Mom, who offered to take them for us. We stuffed clothes into a bag for Eden, even knowing she wouldn't wear them while in the hospital, and headed out. At one point, I just stopped and said out loud "I can buy anything I need there, let's just go."

Bob went and got the boys from FKO early so we could say good bye and we were on the road shortly after 2. I posted on facebook a little about what was going on and was immediately inundated by texts and comments offering support and prayers and offers of help in any way we could name.

We got to the hospital around 5.30 and after a (seemingly) lengthy check in process, we were escorted to the cardiac floor and shown to our room. Eden had last nursed at 11am, then proceeded to sleep until 5.45 and insisted on nursing as soon as she woke up, so I walked through the hospital nursing my baby with no shame.

On the way, Austin's parents agreed to take the boys so Mom and Bob could come be with us in the hospital and Mom could get a better understanding and help us understand what was going on. They met us at the hospital around 7 and we met with a doctor who finally told us what was going on.

Eden has four things going on in her tiny little heart (tiny in size, not necessarily in emotion): a patent ductus arteriosus (PDA), an Levo Transposition of the Greater Arteries (L-TGA), a Venticular Sepal Defect (VSD) and a Pulmonary Stenosis (PS). The doctor drew this diagram to help explain things:

Yeah, it's confusing. Basically, the PDA is the little bridge between the pulmonary artery and the aorta, The L-TGA is when the pulmonary artery and the aorta are switched and the left and right ventricles (lower chambers of the heart) are switched. It's a congenitally corrected thing meaning that during development the cells attempted to fix the problems. A VSD is a hole in the wall between the ventricles. This allows the red and blue blood to mix (with and without oxygen). The PS in Eden is thickened pulmonary valves leading out of the left ventricle. 

I know. A lot to take in and it's hard to really understand. The diagram actually helps, I promise. Maybe this one will help a little more. It's still confusing.

Several of these issues will occur together when they occur and typically can be fatal if not taken care of. All together, though, they're what's keeping Eden alive. 

The left ventricle is stronger than the right and so it'll pump the blood harder and faster. That could wear out her heart quickly and cause some issues with the PDA. HOWEVER...the PS slows the blood down so that everything pumps a little better. The PDA being open is helping circulate the blood around the correct way, too. The L-TGA means the blood is going from the correct ventricle to the correct location. The VSD is mixing the blood so that helps keep things working too (sorry, I can't remember all the details, it's been a bit of an info dump the last two days).  

It's insane, but her little wackadoodle heart is so messed up that it's working ok for now. 

They hooked our tiny baby up to a bunch of machines (luckily no iv's or anything inserted into her body, just wires taped down) and we settled in for the night. Because of an child's death during co-sleep, it's no longer allowed at the hospital, so we were in for a long night. Eden sleeps best when on someone, or at least very close. So she (and we) didn't really sleep until she just wore herself out around 3.30. 

Friday morning, we went for another ECG around 11. It was another hour long procedure with the tech getting the doctor in for the last 10 minutes or so. Then we went back to our room to wait some more. Mom and Bob came and kept us company, more doctors, nurses, residents, medical students, fellows, nurse practitioners and physician's assistants came in, all interested in hearing our daughter's heart. Apparently, it's a pretty cool murmur, at least according to the medical students. They were two guys who looked almost giddy to be assigned to Eden's team. Later, I thought "I should have told them that it's probably not best in the future to tell a sick child's parents 'We heard your kid has a really cool heart murmur, can we listen?'" We weren't offended and were fine with them listening, but others might not be so open minded. 

We got no new information from the second ECG except that they know where some arteries or veins or something are and that will be very important for later. 

At some point, we were talking to the doctors again and they confirmed that yes, she will have surgery and yes, it will be open heart. They hope that everything can be fixed in one surgery, but there's a chance they won't be able to. They're also certain that she'll have to have multiple surgeries in her life and for sure she'll always need to see a cardiologist. After the laundry list of acronyms going on, that didn't surprise me. 

Interesting note: open heart is not the same as a bypass surgery. They will literally open her heart to operate on it. Bypass is open chest for sure, but the heart isn't opened up. 

We were told they wanted to go ahead and do a hearing test, an EKG and an ultrasound of her head and kidneys and take an x-ray of her chest just to make sure everything was good there. 

She passed her hearing test, her x-rays were good, and the ultrasound of her kidneys was perfect. She has a very slight bleed in her brain, a Grade 1 Inter-ventricular Hemorrhage. It's probably from her birth. A couple of people said that if they did the head ultrasound on all newborns, they'd probably find it a lot, so there's absolutely no concern on that front. I forgot to ask for the results of the EKG. 

The ultrasound and EKG were done late Friday night, after 9pm, so we could get out of the hospital at a decent hour on Saturday. We still got to do the sit around and wait thing Saturday morning, which is pretty much what you do in hospitals it seems. We were scheduled with a Children's cardiologist who comes to Abilene twice a month for some follow up visits. And then, finally, we were told we could go home. 

We left the hospital around 2.30, went to Arlington to get the boys, then headed home. Of course as we hit Baird, Elijah threw up on himself so we pulled into a gas station and cleaned him up. He's not really sick, just tired and overly excited after a weekend with his grandparents. As I type, he and his brother are passed out in their own beds, grumpy enough, but happy to be home. It's a confusing bunch of emotions for them. 

The surgery to fix Eden's heart is going to be a major one. No idea on how long it will take, but there's a lot to do. 

They're going to close the PDA and the VSD and switch the L-TGA and probably fix the PS at the same time (it's not mentioned in the above diagram but we're assuming that). A lot to do on a tiny heart. They're hoping to let her grow as much as possible with the soonest time to do the surgery being when she's 6 months old. Obviously, if she starts having issues, they'll do it sooner. We have a whole list of things to keep an eye out for, so we'll be a tad hyper vigilant. (Yes. That's an awkward phrase. I'm sticking with it.) 

She is especially susceptible to respiratory illnesses so we'll have to practically quarantine ourselves during cold and flu season at least until she has the surgery. This really means staying out of unnecessary crowds and making sure people who hold her aren't sick with any kind of cough or sinus anything (including allergies because who knows what you're coughing or sneezing out that doesn't bother other people but might affect her). We'll likely insist on hand washing and even use of hand sanitizer before people hold her just for precaution's sake. We don't think you're gross, we just think you might have germs that can possibly hurt our baby. I'm sorry if that offends you, but my child's health is more important to me than your feelings being hurt. And I'm sorry for how callous that sounds. 

To help her with that, she's going to be getting shots of Synergis every month, an antibody against RSV. It's not a vaccine, but that's the easiest way to explain it. It's new and super expensive, but Eden is basically exactly what it was developed for. Fingers crossed insurance pays for it. They should. I've got a whole bunch of literature if anyone cares to read it. 

It's all so overwhelming. I have this tiny baby that I'm still getting to know, I'm still recovering from her birth and adjusting to breast-feeding and sleeplessness. I'm trying to figure out the juggle of three kids instead of two...and now I have this thrown at me. 

I'll admit, on the way to Dallas, I had no idea what they were going to tell us, but a small part of me tried to brace myself for being told there was nothing they could do and my baby was dying. Were they going to say the murmur was something small and easily repaired? Were they going to tell me this baby I wanted so badly and adore so much had a life expectancy of just a few months or years? I refused to even allow myself to go down the path of the worst case scenario and just blocked it all out. Maybe it was all some kind of mistake and everything was actually ok and this was just going to be an expensive anecdote to tell in the future. I didn't want to even think about all the plans we had for her, all our hopes and dreams because what if....?

Luckily, no one said anything like that. Everyone is very confident that this will be something that can be repaired. Her quality of life will be normal, though she may not be able to be a superstar athlete. We asked about her activity levels as she gets older and the doctor said Eden should be able to play sports and run and play, though she may not play Varsity level sports. We laughed and said a child of ours wasn't terribly likely to be athletic anyway but it's good to know she'll be able to keep up with her brothers. Some of the things are things people can live decades with before it starts to affect them. So she'll be fine. She'll be normal. She'll be a little girl who's heart was broken and then fixed. 

The staff at Children's was amazing. Everyone was so friendly and oohed and aahed over our perfect girl. They were impressed with our handling of the situation and her easy going nature. We assured them we do cry about it, but we try to keep that private, just because it doesn't do any good or change the situation. 

Our family and friends have been so supportive over the last 72 hours, calling, texting, messaging on facebook, visiting and bringing us things (thanks James and Nhu and Cari!) and that is overwhelming in a good way. There's so much more to learn about and more to go through and I'm sure I've got some of the details wrong above, but this is my current understanding of the situation. 

My daughter has an extremely rare heart. It's put together in such a way that it's working against the odds. She's perfect in every other way and the only way her heart is negatively affecting her is that she has poor blood circulation in her feet (they're a bit cyanotic, or purple). She eats and sleeps well (when against people) and her kidneys and bowels work great. She's wonderful and we fall more in love with her every day. And we'll get to do so for a long time. 

Our sweet little ladybug. I promise that's a newborn outfit, she's just tiny.