Saturday, January 31, 2015

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.

Saturday, January 24, 2015

Introducing Eden Elizabeth, the newest EE!

If you've heard my previous birth stories for the boys, you know I don't do birth half assed. Asher was five hours from start to finish, Elijah was 2. Eden...well, she decided to be a little different.

I started having light contractions in the middle of the night on Thursday. I let the MDO teachers know what was up just in case things progressed but of course they did not. Contractions off and on all day Thursday and then all morning Friday with no real advancement is kind of annoying. Around noon, I decided to take a nap because I was tired and the grandparents were in town and Austin was home "just in case" so I could without worrying about children destroying the house.

I woke up around 3.30 with harder contractions. Nothing I couldn't handle, just uncomfortable and frequent, about 4 minutes apart. We waited until they'd continued for a half hour before informing people. Carol, the midwife, came at 4.30 and checked me and said we had a while to go (I was 3 cm) and to call her before they got really bad. We rearranged our dinner plans to eat here, called and texted everyone, and kept on timing the contractions.

Mom showed up with food around 5.30 and by 6 I was in the bedroom with hard contractions that hurt a whole whole lot. We debated calling Carol but figured I had a while yet. I decided that I'd wait until after dinner to call everyone because surely we had time.

At 6.30 the contractions were almost unbearable so Mom checked me. I was at a 6 so we decided to call Carol and text/call everyone else to come on. I probably still had a couple of hours.

Probably 2 minutes later (not exaggerating) I felt the urge to push with every single contraction, which were now pretty much on top of each other. I was still laying down and it took a lot of strength and two people to help me get into my preferred position. I had wanted to change into something else to wear  but there was literally no time. I could feel her crowning, Austin and Mom could see it, there were just a few pushes on a couple contractions and Eden fell out into her daddy's hands. It was less than 15 minutes since Mom checked me at 6.30.

We attempted to get an audio of her first cry but I'm actually not sure if we did or not. Austin will have to check his phone. I remember pushing a button to start but not sure about stopping. She got wrapped up in a flannel blanket her great-grandmother made and handed to me. My and Austin's clothes were covered in blood and goop and she was too but she was otherwise beautiful and perfect. Still is, to be honest.

I seriously never know what to expect with delivery. I suppose this is the most normal of my three, but it was still crazy. She was taking her time, then all of a sudden changed her mind and wanted out right. now.

No one was present for her actual birth but her parents and her grandmother, who, thank god, knew what to do while we waited the few minutes for Carol to arrive. Her other grandparents and her brothers were in the house but I'm not sure what they heard. The boys don't seem traumatized this morning, so I'm betting they're ok. Her grandfathers went out and got her a birthday cake, because why not? Her aunts and uncle came to see her, as did two surrogate aunts and a cousin. She hasn't cried much (granted, she's less than 24 hours old) and has taken to nursing like a champ except when it means getting taken away from Daddy. Apparently she's already chosen him as her favorite. Maybe because he's the first face she saw, maybe because his body temp is higher than mine so skin to skin with him is warmer. Either way, she sleeps REALLY well on Daddy's chest.

So, thank you to everyone who was here and who helped and supported our decision to have a home birth. Thank you to Mom and Austin for catching her and helping me with that last insane 15 minutes. Thank you to Mom for making dinner and taking over the rest of the guests. Thank you to Bob and Allen for getting cake and the two of them and Beth for keeping the boys preoccupied. Thank you to Carol for being our midwife and for doing the important stuff that needs to be done after the birth. Thank you to Amy for being the rock star soulmate and doing things she never thought she'd do and seeing things she never thought she'd see. I love you! Thank you to John for coming and taking pictures and to Kristen and Brandon for coming and bringing Gatorade and flowers. Thank you to Cari and Stephanie and Victoria for just coming and celebrating our baby with us (and for Cari getting us some groceries and lunch today). It's been an intense 24 hours and we couldn't have done it as easily without you.

Fast asleep on Daddy's chest.

Thursday, January 1, 2015

Goodbye 2014, Hello 2015

Holy cow, 2014. What. Just....what.

This time one year ago, I had a 3 year old and a 15 month old and was starting to reconsider my decision that we were done having babies. A couple of months earlier I'd given away a TON of baby clothes from newborn through 12 months to a young woman in our church who was having a baby because I was finished. Pregnancy and newbornhood were just more than I could handle with two, no way was I going through all that a third time. (Spoilers ahead.....)

My mom was still a widow but seeming to get into the groove of it with fabulous trips around the world, the most recent having been India for three weeks in November. The holidays had been a fun experience for our small family as the boys were really old enough to appreciate Christmas and Thanksgiving with their cousins. Austin had settled into his new job at Ludlum and all seemed right with our little world.

What a difference a year makes.

I really really REALLY wanted a daughter. We'd tried (sort of) a specific method for a girl with Elijah and as you already know, that didn't work out. We love our crazy boy, but a small part of me really wanted to try again for a girl. I was nervous about a third boy (they're a little nutso) but we ultimately decided that yes, we would give it another shot. The first month we were unsuccessful, but the second month it took. Based on our methods and timing, I was pretty sure it was a girl. Needless to say, we were excited either way. I knew what to do with a boy, I had all the clothes and gear and toys for a boy. A boy would be super easy to work into our family. But a little girl....that was what I wished for.

About three weeks into January, Mom informed me she had a date. With a man she'd met online. I was a little skeptical (the previous guys were busts) but encouraging. Apparently, that took because they spent about 3 hours at Abuelo's on their first date and had their second date about 12 hours later. The boys and I met him that second day because our water main broke and we needed a place to stay while it was repaired. He seemed nice enough, but I didn't think too much of it since they hadn't known each other for 24 hours even.

Five months later they got married and expanded our family to the point that I'm actually a great-aunt to a step niece. It was a whirlwind of "wait, seriously? Your mom is getting married? I didn't even realize she was dating!" Yeah, we didn't either.

He did come to each of us kids in turn and ask for our blessing and let us ask him questions about whatever we wanted to and quickly won a place in my kids' hearts by letting them play on his iPad. Plus Elijah is/was at the age where he loves having a grandfather around to sit on.

I reconnected with an old friend in January and we've made a point of getting together as frequently as we can with husbands and kids around and she's expecting her first, also a daughter, about 10 weeks after our little pink bundle. That's been fun, warning her from "the future" of what's coming. Or at least giving her hints of what might come. Not that she needs my advice, she's got three nieces and a nephew, but it's still been fun.

The rest of the year saw hail storms and trouble with insurance companies and a couple of hospital visits for sick kids and morning sickness and probably the worst holiday season I can remember. Austin was sick through Thanksgiving and the boys were sick around Christmas. They were nice enough to pass it on to me and I've gotten to be sick through Christmas and New Year's to the point that I'm currently on antibiotics to help clear this all up. I should be done with the meds just in time to hit full term and "ready to pop any day now."

Overall, 2014 was a good year. We saw more good than bad and the bad typically ended up with something good (new roof and car, little extra money in our pockets for the coming year, the promise of a little girl joining our family). We're looking forward to all that 2015 has to offer. Who knows what it'll be. I'm resigned to the fact that we'll never have a year without something big happening. It's just not our style.

How we looked last year (it's Asher's birthday and they were far more interested in presents than in picture taking)

And this year. Again, more interested in presents than in pictures or even talking to BB and Papa. 

And me and the ladybug who's more of a bowling ball at this point.