Monday, April 20, 2015

We have news!

We actually have something worthy of posting! Two things, even!

Eden has had a little cough for a few days now and that, combined with some congestion and a runny nose prompted a visit to her doctor this morning. She's ok, the cough will go away in a few days, but her ears were a bit red so now she's on amoxicillin like me. We're on drugs together! While there, I asked about the Synegis stuff and the doctor said we're just flat out denied. She didn't say it, but I think there's pretty much nothing else to be done at this point since their medical director/doctor/whoever agreed that Eden should have the shot and they were still denying it.

When I picked up the prescription at the desk, I asked if the receptionist had any clue what we were going to owe for the shots, just so we could start pulling money from various sources. She didn't know, but the nurse spoke up and said that insurance actually HAS started paying for them, she just hadn't had a chance to tell the doctor.

Apparently, BCBS is paying for at least some of it, which is awesome. I asked what we'd need to pay, if she knew, and she said she wasn't sure. The doctor was there and she said we wouldn't have to pay anything. We're good for this season. How great is that?!

Also, she's gained about 3 ounces since Thursday, so that's great. That's the result of two 4-oz bottles with formula in them a day since then. Good to know things are working.

Friday afternoon, I was exhausted from a lot of running around on Thursday and Friday morning and being sick (sinus infections are the worst) so was taking a nap. As a result, I missed a phone call from Children's to schedule the heart cath procedure. I called today and we've got a date set for that: July 15.

We'll go up on the 14th to have a pre-op meeting and to fill out paperwork and whatever, then the procedure will begin early on the 15th, like 6am early. We'll stay that night in the hospital and if there's no complications, we'll go home on the 16th. Mom and Bob are going to keep the boys on Tuesday, the 14th, then Cari, my sister, will come and keep them Tuesday night through Thursday morning so that Mom can come be with us in the hospital. This is amazingly helpful, because it means as little disruption to the boys as possible. And they love going to Oma and Papa Bob's house.

Again, we're thinking they'll very likely schedule the surgery for fairly quickly after the cath, like August or September, which means that she'll definitely be eligible for the Synegis next season, meeting the requirements of medication and/or oxygen for a time.

It is a HUGE relief knowing that the Synegis is covered, even if it's just this past season that's covered. We're going to reduce the amount on our GoFundMe because we will still need some financial help, but not nearly what we were thinking. I'm feeling a lot more settled and calm now that I have something set down on the calendar to work towards and everything is seeming to settle down around here with Eden.

I forgot to mention on Thursday that we mentioned the Zofran to Dr. Kane and he kind of laughed and said that what I took was not enough to cause anything in Eden. So, that tiny part of me that was feeling like MAYBE part of this was my fault has been silenced for good. Yay for that, too! Things are really looking up.

As usual, here's the link for GoFundMe:

Eden's Medical Fund

Thursday, April 16, 2015

A date! Sort of.

Those of you who know me know I'm a planner and since we haven't been given any set dates for anything, I've been a little nuts. Today, we finally got a slightly more set timeline!

Eden's appointment went as usual: weight, length and other vitals taken, then an echo done and a conversation with the doctor.

Her weight hasn't increased as much as we'd like it to: she's only gained half a pound in the last four weeks. We've been tracking her pretty frequently, anytime I'm in a medical situation, I ask to have her weighed, so she's been weighed about 4 times in the past four weeks and it's never as much as I want it to be.

The reason she isn't gaining as rapidly is because of her heart. Of course. Her heart is working so much harder than a normal 3 month old's that her metabolic rate is higher. She's burning calories almost as fast as she takes them in. I have plenty of milk and we nurse on demand and give her a bottle of formula fortified milk every night. At least she IS gaining, I suspect if she wasn't getting the fortified milk she wouldn't be.

Our plan for fixing this is to increase her fortified bottles to two a day. This is a mixed bag for me.

I've had allergies that turned into a cold that turned into a sinus infection. I took some Claritin last week to help stave off the worst of it and it didn't really help and it made Eden sleepy, so I decided not to take any more. I'm glad I didn't, because today, at the doctor's office, I was told that decongestants that dry up your snot and mucous can also dry up your milk. Yikes! I've definitely noticed a decrease in my supply this past week and chalked it up to being sick and not eating as much. That's part of it, sure, but so is the medicine. I'm on antibiotics now so hopefully I'll get better quickly and my milk will come back in. For my mental comfort and to stay ahead of her, I'll need to pump at least what she drinks every day, if not more. If I can't pump anything else out after today, I've got 14 days' worth milk to fortify for the future. That's pretty nice, but I'd like to be able to keep pumping and nursing her. So fingers crossed that all goes back to normal.

Her height has grown, she's now 22 inches long. She definitely fills out her clothes length wise. She's taking after me, long and thin. Her pulse oxygen levels were good, 92, and her other vital statistics were good, too. The only concern today was her weight.

We talked to Dr. Kane about a few of our concerns: Her weight gain, an ideal weight (as big as we can get within reason...there have been no studies showing a certain percentile does better), her possible adverse reactions to serious pain medications (Mom and I both get super sick on hydrocodone and morphine type pain killers) and a timeline for everything.

Our timeline has always been "when she gets x old" which is not terribly helpful. Today, he finally gave us an estimated date: mid-July. We know this could change and that it's still not super specific, but at least it's something.

Here's our new tentative timeline:

Mid-July we'll go to Dallas for her heart catheter procedure. We'll be there over night, possibly a little longer, because they want to do an echo while we're there so the two sets of results are basically simultaneous. They have surgical team meetings every Wednesday evening and at the one after her procedures, they'll discuss what her results show. They'll decide what they think is the best surgical option for her and look at their calendars to schedule it then. There's always a slim chance they'll think she's doing great and can wait a little, but the fact that she's deteriorating a little already makes me think that won't happen. Dr. Kane didn't say it, but Mom and I both suspect that they'll very likely schedule the surgery for 4-6 weeks after the cath procedure, if not sooner. She'll continue to grow and while things won't change drastically, they will shift a tiny bit just as a result of her growing and if they wait too long, they'd have to do everything all over again.

Depending on what surgery she has will determine when the pulmonary stenosis is repaired. It's something that very well may be repaired at a later date, but today Dr. Kane said it's possible it could be repaired during the surgery, depending on what exactly it looks like and what surgery they do.

So, we're feeling a little better about some things and a little anxious about others. She's been fussy recently and we think it's because my milk hasn't been quite enough in the evenings lately. She's due for her 3 month growth spurt and with my milk being less than usual, that's frustrating all around. So we're going back to our first pumping techniques: pumping after most nursing sessions and pumping when she gets a bottle. So I'm still tethered every few hours. lol

She's still beautiful and content 99% of the time. She smiles at people and loves her brothers and Daddy. She's started pulling back from nursing and looking up at me with a big grin and a little chuckle, then diving back in, her eyes rolling up in her head as she nurses like this is the best stuff she's ever tasted (which, let's be honest, it is).

Thanks to everyone who's donated on our GoFundMe page! We've got her bank account all set up and we're grateful for every dollar people have given us. We know how tight finances can be for some people and that makes it even more amazing to us that people are willing to give us something. If you'd like to donate, as always the link is below. Please don't feel obligated or guilty that you can't. Prayers and well wishes are just as important as money.

Eden's Medical Fund

And now, a picture!

Enjoying the zoo last weekend with Mommy and Elijah

Sunday, April 12, 2015

Elijah's in training to be a rock star

First off, thank you so much to every one who shared and contributed to our gofundme or in person! We appreciate your help in getting the word out about this and for helping in big and small ways.

As before, the link is Now that we've crossed $500 you can search for it several different ways. It's titled "Eden's Medical Fund."

This blog didn't start off intending to be just about our journey with her medical issues, but about our family as a whole. I write it to remember the things we go through as a family and to remind myself in the future that I thought I was in the worst of times and I came through it. So today I'm writing about Elijah.

My sweet middle child has really gotten the shaft. He didn't get any showers before he was born, he got fewer handmade items from people. He's the second boy in less than 2 years, so he wasn't as "special" to others, though he was precious to us always. He's bigger than Asher was at his age, more physical in everything he does, and has gotten less one-on-one time than either of his siblings.

Asher got books read to him every night from about birth on. Elijah got some of that. Asher watched lots of PBS and we worked on letters and numbers and colors with him so he was reciting his alphabet by 18 months and pre reading by 2 and reading by 3.5. At 2.5, Elijah knows some of that stuff.

He's not behind, he's really pretty normal, he just isn't as far as Asher was at his age and sometimes that's hard to remember. He's not quite as verbal, either, so when he gets upset and can't get his wants across, he melts down and starts throwing things and crying and kicking. We have insane temper tantrums every day.

Or at least we used to.

Easter Sunday was the worst for us. He was beyond exhausted after a morning of fun at church and then an egg hunt at Oma's house and dinner getting a little delayed because we weren't quite ready on time so around 4, he had a full on melt down to the point that he physically injured himself. Nothing major, but he scratched his face to the point that he drew blood. Austin couldn't calm him down, he was so worked up. So, we packed up and headed home. I was practically in tears and later, when Austin and I were talking, I did cry. This was my life every. single. day. A child who's so strong he has very nearly knocked me over when he gets going throwing temper tantrums like this every evening. Austin had been going in later in the morning which meant he wasn't home until 7. Any stay at home mom knows the "witching" hour starts around 4 on a GOOD day. Imagine it lasting for 3 hours and you'll see where I was. I have to protect Eden from his fits of throwing and flailing on top of protecting her from his coughing and sneezing (allergies are monsters around here) and that's hard to do when I'm nursing her and he starts throwing his cup at me from across the room and screaming and hitting my legs and arms because I won't come right this second to get him a drink. He's gotten lots of spankings and swats and forcible removals from rooms.

A lot of this is because of Eden, we know that. He not only lost his place as the baby, but he lost more attention because of her health issues. He's too young to understand why, all he knows is that now he's more alone than he was before. (Alone meaning playing with his trains by himself in another part of the house.) Part of it is because he's 2.5 years old now. Apparently that's worse than 2, then you get a brief respite at 3 before it all goes downhill again. Asher didn't really have a terrible two phase, not like this. He turned into a pill around 3.

I read, and agree with, the reason 2 and 3 are so tough are because kids have a hard time explaining and expressing themselves. They understand adults a lot better than we think they do because their verbal skills just haven't developed. We tried teaching the boys some sign language to help with that and they know the same signs: more and please (very helpful at dinner, not really helpful any other time.) So when we can't get Elijah to communicate (when he's really frustrated or angry he becomes nonverbal. He won't open his mouth to talk) we ask him to show us. That doesn't work too well either, but it's better than trying to guess.

So, rather than feeling like I'm beating my child every day and he still won't obey (I wonder where he got that stubborn streak from?), we decided to try something different. As much as possible, when he starts to melt down, we just pick him up and hold him, talking to him gently until he quiets down and can be calm. Sometimes it's just a few seconds, sometimes its a couple minutes, sometimes its longer. It depends on the situation.

The worst tantrums always came at nap and bedtime, so I quit on naptime. I'm not going to try to deal with that by myself with two other kids in the house. So he doesn't nap at home anymore unless he's just exhausted and falls asleep on his own, which he does a couple times a week. At bedtime, we randomly let him sleep in his chair in the living room one night and he went to sleep early (9) without a fight. It was incredible. So every night this week, we've let him do that. And we haven't had any trouble.

He needs our attention and gentleness instead of our frustration and distraction and that's hard to do right now. It really resonates with my Mommy Guilt that such simple actions as letting him sit in my lap or stroking his hair when he's upset are enough for him. Letting him sleep in the chair in the living room so he has his own space is an interesting discovery, too. As a result of that, we're starting to actually work on getting the room situation for the boys figured out. We haven't quite settled on how it'll work yet, but something needs to change for everyone's sanity.

It's only been a week, but it's been a week with much fewer tantrums from Elijah. He's a sweet boy, really. He's got a great smile and he tells me he loves me and gives me instructions on proper kissing technique. He brings me the snacks he wants for me to open them for him. He eats pretty much whatever we give him, one of his favorite items being broccoli.

He is still 2.5, though, so he still throws things and has a temper (again...where did that come from? lol) but when he quiets down he's a cuddler and really just wants me to watch Thomas with him. He loves his baby sister and likes to look at her and kiss her head and knees and pick out her hair bows. And no matter how many swats he gets in a morning, when I come to pick him up from FKO or after Sunday School, he comes running down the hall with his arms stretched wide shouting "Mommy!" with a smile on his face. And that makes it all worth it. Hopefully we'll get to a point where I've always got that sweet smiling boy around. Or at least more than the angry, frustrated toddler.

Wednesday, April 8, 2015


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.

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.

Happy Easter!