PDA Ligation: "Our Attempt to Keep Life More Interesting"

See, I'm going to chalk last week up to one simple assumption:

God thought we were getting bored.

Monday: Miss E did not eat well all day. She sweat profusely (you would have thought you dumped water down the back of her head) whenever you attempted in vain to convince her that she really should eat because it had been hours and hours. She wanted nothing to do with the bottle. No screaming or arching away, reflux-style; she just hung out with it in her mouth and won't drink, or stuck her tongue out at you, or talked to you in babyspeak about why she wasn't going to drink, very sweetly. The medicine syringe feeding, our usual fallback, wasn't going much better. I came home and called her pediatrician, who wanted to see her in the office. They told me to pass the news of these symptoms on to her cardiologist, and they gave him a buzz as well. Now, our pediatric cardiology doc, who we love, is an attending at duPont Children's Hospital in Wilmington, and he sees kids in NJ on Thursdays only. He listens well, he seems to think we know what we're talking about when it comes to our own kid, and we like his soft-spoken bedside manner. So I readily called him down there and instead I got the on-call cardio doc, who I was less than thrilled to talk to: Mr. I'm-busy-over-here-what-do-you-want. "I don't really understand why she's having all these congestive heart failure symptoms when her PDA is so small." REALLY? Hold on, let me just go explain that to her.

He told me to give her an extra dose of a diuretic at midnight to see if it helps (reduces the swelling of her heart, alleviating her symptoms). I took her in to her pediatrician for a check and her vitals were good (pulse rate, respiration rate was significantly high but when is it not high?, and her color was good), but he didn't really like what he saw, either. We were both having a Miss Clavel from Madeline moment: "Something is not right!" Pediatrician says he was calling Mr. GOOD Cardiologist himself. We got home and Mr. G. C. called me shortly after. He was ticked that he wasn't paged to talk to me earlier, instead of Dr. Busypants. He gently broke it to me that we woul have to proceed soon with surgery, rather than waiting for her to be evaluated as a candidate for the catheter procedure. The risk of infection of the heart/lungs (which in this situation has an up to 50% mortality rate) isn't worth the benefit of possibly doing the catheter procedure and avoiding surgery. I gave him a Heck Yeah, and he told me he would see what he can do about getting her in next week.

Tuesday: More of the same, ate slightly better, if I remember correctly. Less sweating. Medicine syringe feeding was all that was really working. Life was again about getting enough fluid into her to keep her hydrated and out of the ER (you can take them in for fluids if this happens).

Wednesday: Towards the end of my lunch I got a call from the medical secretary at duPont. She talked to our cardiologist and they wanted to proceed with surgery. She wanted us to come in the next day at 10 AM for pre-op tests and E would be first on the schedule Friday morning. We were told we should stay down in Wilmington at the Ronald McDonald House Thursday night after the tests and be at the hospital bright and early, 6:15 AM, for admitting and pre-op stuff. 10 minutes of talking to her, scribbling notes and phone numbers on the white board in the art room where I was eating lunch, and I then taught three back-to-back classes. Don't ask me what I taught. And then I flew home.

I made some phone calls and packed like crazy.

Meanwhile, Bob heard from two sources about two separate job openings for next year. The market is flooded with teachers with RIF notices in their hands, so competition is probably high for these positions. He spent the evening updating his resume and writing cover letters to send out the next day. We went to bed late but (mostly) ready to roll the next morning. Turns out I forgot a bunch of stuff, like my glasses, etc., but we did pretty well, considering.

Thursday: We dropped Maddie at Nana and Pop's, and Nana took Bob's job application stuff to mail for him. We drove down to Wilmington and located the Outpatient Testing area at duPont. E had blood drawn for labs (she was less than thrilled), an EKG and Echo cardiogram ( she slept through!), and we got a tour of the Cardiac Unit and CICU (Cardiac Intensive Care Unit) at duPont. All this took about 5 hours. We left, and checked into the Ronald McDonald House right down the road. What a place. I will be pitching my change into every RMH charity box I find. This place is amazing. As it should be. Some families are there for one night, like us. Some are there for months, even over a year, while their child has medical therapy treatments or awaits a tranplant. It's a big like a co-op mixed with a fancy hotel. Check it out:

The game room off the living room:

The playroom on the main floor (one of many in the building):

The living room/play room on our floor:

Our room:

We all collapsed there. Barclay's bank employees were the volunteers for dinner that night. They grilled steak. Good night to be there.

Friday: We got up at 4:30 and brought her in to the cardiac unit. They checked us right into a room gigantic room and started prepping her for surgery. She was happy and kicky. We were barely nervous at all until the pediatric cardiothoracic surgeon came in to talk to us. Here's what he said:

1. This is a simple surgical procedure. They go in on the left side of her back under her arm and tie the PDA closed. She'll have a scar there.
2. This is a more painful incision to heal from than an incision on the chest, but they have to go in from the back because of the location of the PDA.
3. There is a very small chance that there could be a buildup of air in the chest cavity which could affect her breathing.
4. There is a larger chance that she could have vocal hoarseness or vocal chord damage because of the breathing tube, or because they have to move a nerve that is connected to the left vocal chord. But the chance of this damage being permanent is less than one percent.

So yeah, like I said, we were feeling pretty good about everything, especially since Thursday's tour and explanations. Then he came in and made us worry all over again. We held her a while. Then were told it was time so we put her in a hospital baby shirt and diaper and walked her down the hall to the OR. It's all there on the same cardiac unit. I hugged and kissed her, and handed her to Bob. I couldn't do the handing over to the anesthesiologist. I did make it back to our room without crying, though. Our nurse told us to go get some breakfast and they'd call us when she was done. We went down to the cafeteria but brought our food upstairs to our room to wait. As we were coming in the unit our nurse found us and told us the surgery was done. That was it! I was like, "Are you sure? They can take their time, you know!" She said to eat and they'd call us to come see her soon.

20 minutes later we went in to the Cardiac Intensive Care Unit to see her. The whole thing took about an hour. We had been prepped to see a scary mess. They warned us about the breathing tube, some skin palor, some blood. I thought she looked beautiful. She was a healthy pink color and she was breathing so easily. I know she was under anesthesia still, but that was the first time I had seen her respiration rate on a monitor be a normal number (20 - 60 bpm. She was often 70-80 or higher). Seeing her breathe so easily just gave me a good feeling. The surgeon came in to talk to us and told us that everything went great and that her PDA was "quite large". (REALLY? Because Mr. Busypants didn't think so. A nurse later said that he must have had the wrong chart because at that point they didn't even have measurements. Doh.)

We were told to let her alone and let her rest. She reacted to my voice and started to wake, so we just kept quiet and stayed out of there to let her sleep the day away. We went to see her 2 more times that day, just to peek, and she was fine.

E, the second time we saw her after surgery. Breathing tube removed, sleeping peacefully:

Saturday: She was still in the CICU but looking good. We ate in the cafeteria and hung out in our room, trying to keep busy. They brought her to our room around 3PM that day. :-) Actually it's HER room, we just roomed in with her. She was on morphine, motrin, and tylenol for the pain. They weaned her off the morphine and she seemed ok. She wasn't interested in eating (but what else is new?) so they kept her on IV a few more hours. Nana and Pop brought Maddie to visit and Bob and I took her down to the playground and the cafeteria for dinner. Then everybody went home but me and Ellie.

Saturday night was NOT a good night for her. The morphine had apparently been keeping her happy and she was not loving life without it. The incision was painful and she was not able to sleep through the pain anymore. She was still not into eating, and holding her was very difficult. Between the variously timed medications, feeding her, and her being in pain and very upset, sleep was not to be had by either of us in any kind of measurable way. We both dozed a few times for no longer than a half hour. Poor baby was miserable. And I didn't feel so hot either.

Rockabye, poor sad baby:

Sunday: When she was not in pain and therefore screaming in this horrible shrieky/raspy quasi-wail (her throat was a mess from the breathing tube) she was happy, kicky as all get out, and active. Maddie-style active. Who knew we had an active kid? They had a hard time keeping her LEADS on for her monitor, and they couldn't get a blood pressure cuff to work. Her daytime nurse and I made sure we timed her meds carefully and got back on top of her pain management. They considered giving her morphine again but around then we discovered that she had kicked her IV boot off her foot, pulling out the IV catheter and all. Good times. She was also not taking a bottle much at all. 10 ml here, 15 ml there. Not enough. A healthy 3 month-old takes 100 + ml a feeding. So they took her to the treatment room and dropped a feeding tube in her. At first I felt this to be a giant step backwards. I mean, wasn't this surgery supposed to be what fixed her, eating and all? Well, not yet. It began to be come apparent that, while the reflux is, well, reflux, and the PDA was making her pant and tire, she also just plain doesn't know how to eat. (I know! A child of mine! Imagine!) So the feeding tube took over the job of the medicine syringe. The latter is a bad habit in the eyes of those who are professional baby feeders at the hospital. This just makes sure that she gets the food she needs to stay strong and gain weight, while having her work on the bottle technique. The problem was that we couldn't do any of our old tricks that helped her settle down and concentrate on eating. Same with getting her to take a freakin'n nap! Put this kid in a swing, or swaddle her up and rock her, and she's out like a light. Although we don't how much of her good sleeping rep was related to being exhausted from the congestive heart failure, I do know I used to have a kid who slept!

Hanging out in the hospital was very frustrating and isolating at times. I wasn't sure what would work or what would hurt her back or throat, so there was only so much I could do to soothe her. You couldn't really walk away from her crib for more than a second without her getting very upset. I totally understood; her whole world had been messed with and this was not her room and not her crib and she probably would love to know why she hurt so bad. The nurses always said, "Don't hesitate to call me for help." but if I did that they'd have disconnected my buzzer after one day. I was unsure and when she got really freaked out, crying and flailing and hurting herself more so crying and flailing more - I didn't know what to do sometimes. I timed my bathroom breaks to when the nurses came in to give her more meds. I did eventually tell them I was going to the cafeteria (just to get out of the room, by the 2nd day the nice big room was feeling smaller and smaller) and they monitored the room from the nurse's station. When I came back 10 minutes later there was no baby in my room - she was being rocked at their station after waking up and finding no Mommy. Poor kid was a mess.

Sunday night her nurse, Marybeth, was a transfer from the CICU, and she was happy to be off that higher-stress floor. She was my angel. She had some feeding expertise and gave Miss E her bottle. Now, she didn't take more than 25 ml but she kept at it for 20 minutes, a new record for her short attention span. Marybeth also just sat and talked with me for over an hour. She said she wanted to make sure Ellie got some decent sleep and that I could sleep as well, so she decided to put all E's feeds "down the tube", as well as her mediations. We got to bed at 11:00 and both didn't get up till 6:30. I woke when the nurse came in several times over the night, but I was so out of it I barely remember more than her telling me that she gave her one med or another, and to go back to sleep. The whole idea was that we both got to "reboot" after a long hard couple of days and nights. It worked pretty well.

Monday: She was doing better. Still not eating "well" but she was picking it up a little more each time. Her nurses told me that they wanted to call a speech therapist to work on her feeding issues - apparently this is the other realm of speech therapy - babies who don't suck well. (That's right. Some babies are NOT born naturally knowing how to eat. And La Leche can suck on that.) They also wanted to call an ear, nose, and throat doctor to examine the damage to her throat; her voice was still raspy and pathetic. You pretty much had to look right at her face to see if she was crying or talking or all-out losing her mind. It all sounded the same, but she rotated through these stages other pretty quickly.

She was getting more into the bottle - wants to hold it herself SO much:

Bob and Maddie came up to visit and Bob and I traded kids and jobs. I had to be at school Tuesday not matter what - I have 1/2 a personal day left to my name. That's all. Bob had about 2 weeks worth of sick days and no job to roll them over into next year - so what was he saving them for? I briefed Bob on the routine and E's progress, and we said goodbye. I took Maddie home and we've been home in Pine Hill ever since, while Bob and Ellie are still at duPont.

Since then: (You know how I like bullets to organize myself)

• She's still on the feeding tube and may go home with it. We'll be trained on it if she does.
• She's getting about 27 oz. a day (7 more than her absolute best intake at home!) and half or more of that is by bottle. So we think she's learning.
• She had another echo cardiogram and they discovered that there is some slacking-off on the part of her left ventricle, due to the largeness of her former PDA and the mess it made of her heart. She's now on blood pressure medication and bp monitoring, and that will heal up with time and meds.
• She's been seen by an Otolaryngologist (ENT) who said she clearly has Laryngomalacia (Example of what it does to a baby HERE, although I've heard these sounds from her she's never been quite that bad. I have, on several occasions, been totally convinced that she's choking...and now I know why.) This does not help with the feeding thing, to be sure! There is no "cure" for this. They grow out of it. So again, time heals. But it's a giant relief to know what it is and that it's not that big a deal.
• She's been seen by a Speech/Feeding therapist, who ordered an Upper GI to view her swallowing technique and anatomy. We don't know yet if there's something wrong with her throat or mouth, or if she just don't get it when it comes to drinking. She said Ellie is a "very difficult baby to feed" (Can I get an Amen!?!?) and that she's never had a chance to really learn how to eat well between the reflux and the PDA and the trouble swallowing that the Laryngomalacia causes. She said there's not a lot they can do to help outside of practicing with good technique. Just having the PDA repaired and hopefully keeping the reflux in check will give her a leg up. They can help us mess with the thickness of the formula (rice or Thick It) or the flow of the nipple, to find her optimum "setting". So we have some waiting to do, some more patience to find. I'll update about the Upper GI, which is due at 1:00 PM today.
• Physical Therapy came by today and told Bob to have her play mat and Bumbo seat brought in so she can commence playing and baby skill-building. They think her incision is healing nicely and she's ready to start getting back some of the muscle tone that she lost from being sickly and then hanging out in a hospital crib for days. So that's good news. Hooray for play!

However, we have no idea when she'll be home. None.

I've learned from Ellie's 3 hospitalizations (in 4 months!) that doctors never want to tell you that you'll be discharged soon unless they're pretty much ready to discharge you right then and there. They don't want to get your hopes up, it's just too mean. To get out of the hospital, she has to:

1. Continue eating well and taking more and more of the recommended 100 ml per feeding in a bottle, not the tube. Yes, please!
2. Tolerate the feedings well from the bottle & tube, not throw them up. Sounds awesome.
3. Gain weight! Never thought I'd hear a child of mine repeatedly described as "too skinny".
4. Get a Learn-to-Eat plan from the speech therapist and set up more help as outpatient therapy with a specialist near us - exactly what is done will depend on what they see on the upper GI. I am excited about this. I love getting answers.
5. Have her heart and blood pressure keep looking good. Needless to say, I like this idea too.

It seems funny that she got in there for a heart issue and now most of the attention paid to her is regarding feeding, but that's really her biggest problem now. The PDA was a drain on her system, and a huge burden to her heart, not to mention very dangerous if left to cause an infection. So now that that's closed and she's on the mend, her other sweet little issues can be addressed. One of the doctors I met with this week said, "We treat the whole child." Good, because I don't think I can take leaving the hospital with a child who's not well, again.

On the way to this point we found out WHY she seems to have these issues, and we're thanking God that they're all freakin' annoying... but not really dangerous.

I'll post more updates as I get them (and as I get time). It's always one more thing with this kid, so who knows what I'll have to report next! People at school have been very sweet and we've had a lot of help, love, and support from family and friends. We love you guys. Really we're ok, thank you. While this has been one hell of a long, interesting ride... she'll be fine, we'll be fine, and we're just thanking God for that.

Pure Indulgence

Image via Wikipedia

Heh Heh. It's good to be the Meg.

• Taking my shoes off and walking around my classroom barefoot on hot days.
• Cranking old LVC Concert Choir concert CDs and singing the Alto I part in the car.
• Smelling the top of my baby's head.
• Taking M to the Disney store not to shop, just to play.
• The diner for Saturday breakfast.
• Target for no reason in particular.
• Pandora.com
• Going in the bathroom just to sit and not be available, providing I remembered to lock the door.
• Starting solid food with my girls before you're "supposed' to. So fun, especially when you have milk-haters.
• My laptop, DVD of Vicar of Dibley (or Scrubs. Or The Golden Girls), and a hot beverage, all at once.
• Lily Allen.
• The Daily Show during my lunch at school.
• Blogging.
• Facebook (duh).
• Reading, particularly a book without pictures. But Boynton books are the next best thing.
• Peanut butter Twix.
• Pretzel M&M's.
• McDonald's mocha frappe.
• Running up my text message totals for the month.
• Sleeping in the afternoon.
• Sleeping in till 8:00 AM.
• Hell, just SLEEP.

Ellie's First Solids

We tried rice cereal from a bowl today. (Instead of in her bottle. Just a little thicker. A little.) This was a success overall. With all her feeding issues we are anxious for her to get to the jar food stage. She already gets some feedings partially from a medicine syringe and opens her mouth like a baby bird (or a baby eating off a spoon) so we just up and decided to go for it. Not like she's not getting rice all day anyway! She seemed to like the experience. We loved it.

And now we play the waiting game

"Aw, the waiting game sucks, let's play Hungry Hungry Hippos!"

~ Homer Simpson

So Thursday's appointment with the pediatric cardiologist from DuPont was fine. E did NOT have a 40 minute screamfest when they removed the EKG stickers this time, so in that way alone it was way better than the first appointment. Oh yeah, and no other nasty surprises. Aside from a poopy diaper.

We found out no more than we were told to expect: E needs to have the PDA closed. Her doctor does not want to let it grow shut on its own, as it is very large and causing her heart more than a few problems. He also doesn't want to wait longer to make sure she's old enough for one closure procedure over another. He wants it done within a month or so.

He is going to take the echo cardiogram pictures of her heart that he got two weeks ago compare them to the ones he got yesterday, and discuss her options with a team from DuPont. The team includes both a catheter specialist and a pediatric cardio-surgeon, because E has those two options for closure. Either perform a surgery that will snip the PDA closed forever, have her in the hospital 2 days or so, and leave a small scar under her arm, OR perform a catheter procedure that will send a small metal coil up through a blood vessel in her groin to her heart, closing off the PDA.

Ligation Surgery:

Catheter procedure:

Sounds crazy, but I'm pulling for the surgery option. Itty bitty preemies have this surgery and do beautifully. Yes, it's more invasive and yes, the recovery time is longer. But in my mind, it works better. I realize, of course, that I know nothing compared to these specialists. They are going to do whatever they want and I'm going to, of course, shut up and pray that it all works fine. But the surgery makes more sense to me. That's just the way my mind works. Metal in my kid's heart? Um... This is probably in the same realm of skewed reasoning as my distrust of airplanes. I know they're very safe overall, but in my mind it doesn't make sense that that giant hulk of steel can fly.

As far as closing this PDA, surgery would be an extra-permanent fix. Her doctor assured me that they wouldn't perform the catheter procedure if there was a chance that the metal coil wouldn't fit the PDA and would therefore dislodge and hang around in her heart, possibly clogging it and - OH MY LORD...yeah, see why I like the surgery better?

A quasi-third option is to go ahead with the beginning of the catheter procedure, taking pictures through the catheter, to find out in detail how the PDA looks. They would then proceed from their findings at that point: complete the implant procedure via catheter, or stop and do the ligation surgery.

So now we get to sit around and wait for them to look at the pictures, take measurements, and weigh the risks and benefits of each option. Yay. I looooove waiting.

I absolutely can't complain, though. She's in decent shape; She is eating better, and we need the medicine syringe less lately (made it to 20 oz. twice this week!!!). She is awake and active more, with actual naps, instead of her previous routine of being asleep most of the time with a few waking periods a day. She's a happy baby. If her doctor feels he can give the whole pediatric cardiology team the time they need to decide, clearly it's not a "Nurse! Get me a PDA ligation kit! Stat!" situation.

:-) Sorry, everything I know about medicine I learned from watching "Scrubs".

So now we wait to find out their answer. Cue the Jeopardy music.

Enough.

Saturday evening, after our little cherubs were in bed, my goal was to fold a week's worth of laundry before turning in for the night. Saturday nights my goal is to get enough done so that Sunday I can spend hanging out with my family. And I had a mess of work to do. So naturally I was collapsed near the mountains of clothes, on the couch, watching Chicago on DVD with a cup of tea. A few moments later I got a suggestion that my priortities were actually well in order; Handsome Hubby dropped a Newsweek article on the coffee table and told me I'd love it.

Two weeks back into my return from maternity leave, which I thoroughly enjoyed, I read the article about mothers who left their children in more willing and capable hands in order to follow their own ambitions...and I found it, well, ENJOYABLE. Not because working motherhood is terribly hard (it is, sometimes) and I'd rather be home with my babies (I would, more than sometimes). The editorial in the Society section acknowledged women who have dared to do what men have been at liberty to do forever: put parenthood second, while putting themselves and their ambitions first.

The author, Julia Baird, sited Dorthea Lange, who gave her five children to foster families while she created many now-famous photographs migrant workers. I am not saying I want this lifestyle, so put away your slings and arrows. Heck, now that I'm back to teaching I already have this lifestyle half the time anyway; someone else is raising my children during the day. It's their fabulous Nana, but still, it's not me. Were we financially able, you would not find me taking my job and shoving it either. Bob is the one who would happily be a stay-at-homer. He may get his wish next year anyway! To me, working means the change of scene, adult conversation, and renewed sense of purpose - things I can't do without for extended periods. I get itchy. To quote author Doris Lessing, who left her children to write Nobel Prize-winning literature: "There is nothing more boring for an intelligent woman than to spend endless amounts of time with small children." Or, Omigod, please, let's talk about something besides princesses and playdough.

Though the career of a public school teacher in New Jersey may be changing drastically in the next decade, right now I feel I've hit the goldmine where working mothers are concerned. I have a career, one for which I was educated and in which I could immediately use that education, but it's a career that lets me be a mommy too. Few late nights, safe conditions (unless you talk germs), and it's still child-focused. Right now, as "interesting" as life has gotten, I find work to be a respite from home and child worries, just as home is my safe haven from the turmoil at school. It's compartmentalizing, and it works.

But most women aren't so lucky, and the guilt factor is high. It's not enough to be a mom and employed. You are judged by media and peers at every turn. Do you kids eat homecooked meals? Gerber tubs count, right? Do you go above and beyond at work? Teachers especially feel this pressure, because that's what "good" teachers do. Do your kids have developmentally appropriate toys that have been safety-tested and weren't made in China? Oops. Do you mop your floors more than quarterly? Um...

Do your kids have socks on? YES! That one I got! ...I hope. Every year further research into child safety and development yields more "dos and don'ts" in parenting magazines. Or as my father calls them: "Fretful Mother Magazine". I have subscriptions to these, too. Ask me if I have time to read them! Do not get me started on the evils of the What to Expect When You're an OCD Hypochondriac. That book is probably responsible for nervous breakdowns all over the mommy world. We have more "musts" for our children's safety and development by far than existed a generation ago. Scores more than in the 1950's, when the nuclear family and the stay-at-home mommy ideal seemed to peak!

Do we have more well-adjusted, healthier, or smarter kids today? Um....

Do we have happier, more fufilled moms? Hmm...

Confessions of a nutcase: In her infancy, I would move Maddie from her swing or Jumperoo if I thought she'd spent "too much time" in one place, even when she was perfectly happy to continue swinging or bouncing. I gave this up after a few months, because, well, I slowly grew out of my crazy pants. Most moms do evolve, after all. All that switching and worrying, because of one article I read in Fretful Mother about the containerization of babies. It warned that babies who are not switched from activities every 15-20 minutes or not held for X hours a day could end up insecure, their language abilities stunted.

Everybody who knows my daughter just got a good belly laugh.

I loved reading in Baird's piece that mothers today are actually more involved than their 1950's counterparts. That was a nice shot in the arm. And women of the Victorian era just banished their kids to the nursery! I wonder if they just trotted them out for those stoic family pictures. Mothers today spend more time with their children but are actually less happy now, explained Baird said, than their non-mother, female contemporaries. This is based on some survey research, I assume. But why? Aren't children the grand prize? Aren't you supposed to grow up, get married, have a little family, and the movie ends happily? Not anymore, because apparently as a collective we mommies aren't feeling it.

Being an elementary school teacher, I still marvel when an otherwise perfectly able child comes to me for a shoe-tying at age 9. Well, if it's always done for you, why would you learn? Seriously. We struggle with Miss M. on a daily basis to get some independence out of her. We have these little princes and princesses, and somehow a vibe got out there that says if you don't do, do, DO for your offspring, you are a Bad Mommy. No wonder we're not reporting bliss.

But back to these women who dare to outsource parenting more than the rest of us. Do they make the usual over-worked but wellmeaning mommy look better? (If so, THANKS!) Or are they setting an example for us who NOT to be? Personally I try to remember that childhood is short, this too shall pass, and I will have time to spare when my kids are out of the house and I'm missing them terribly. So I'll hang out at home as much as I can, and leave the rest to bide its time on the shelf. But I loooove my "me" time. For instance, I just took time to blog when I could have been, I don't know, doing something about those floors. Or my gradebook. Yes, my little E loves her swing and play mat and hangs out there a lot longer than 15 minutes. No, Maddie and I have not "done numbers" (her preschool workbook that she adores) in days. But as far as my involvement, my commitment to Mommyhood?

Yeah, I do enough.

I will forever love Baird for her reassurance of that fact: "Enough. If you love your kids and are doing your best, if they are alive, safe, and sane, then your mind should simply be at ease."

Weekend Update.

Because when else is there time to update?

Ah, we do love drama around here lately, don't we? 2010 has been nuts, just plain freakin' NUTS and I would love to tell it to dial it back a bit, por favor!

An update for friends & family, or perhaps to explain to people at work why I don't seem to be quite right in the head:

• Bob is 99% officially out of work for next year. He may be able to find something, he's looking, but he's also entertaining the stay-at-home-dad-who-gigs-on-the-side possibility.
• Maddie is healthy (Thank you, God) and a fabulous, precocious handful. Preschool is set for next year, and we are thrilled. Shout out to Aunt Cyndee who saved our butts long after enrollments were done at most schools around here, when all the sudden the possibility of Miss M going to "Daddy's Work Preschool" was gone. I visited for a whole session with the eyes of a mother and a teacher, and I loved what I saw. We are psyched about Our Father's House.
• My school district is in crisis mode, but what school district in this state isn't? What school district isn't, period? Here's where I stand: What do we teach the children? We have to look out for each other. Especially the kids first, principles be damed. That's "p-l-e-s", not "p-a-l-s". I have no problem with any of my principals, for the record. I think we should ride out this DONKEY of a governor and keep whoever we can on staff, for the good of them, their families, and the kids of our district. Did somebody say something about 34 in a classroom? Please guys. It's not about money anymore.
• Ellie has had a bad cold, hasn't been eating (at least not from a bottle, and at least not well), and life is pretty much about how to get her to eat enough to stay hydrated and stay out of the hospital.
• Oh yeah, and Thursday we found out that that harmless heart murmur that we knew was caused by a patent ductus arteriosus is actually causing her congestive heart failure.

When people asked me yesterday "How's the baby?" I responded: "Do you want the long answer or the short answer?"

Short answer: "She's sick, but she'll be fine."

Long answer: On top of the reflux and a nasty cold, she has a patent ductus arteriosus, or PDA. This is usually no big deal. It's a little tube that is present before babies are born so that they can get oxygenated blood from their mothers. It's supposed to close, but many times it doesn't. This doesn't usually cause a problem and it usually closes by itself in a few weeks or months anyway. In Ellie it seems to have no intention of closing. A lot of blood is flowing across it and that is causing her heart to be flooded with extra blood. This causes her heart to be significantly enlarged, and have to work two to three times harder than it should. She therefore doesn't feel well. She breathes fast, she tires very easily, she sleeps excessively, and she doesn't eat well or gain weight well. Except for the lethargy, these have all been treated as signs of severe reflux (making my previous blog post...well, not WRONG, because she definitely refluxes. Hello puke...but let's say it's only a "part 1".) But that's been a big part if not all of her problems, we're pretty sure. When I watched her sleep and just didn't feel right that she's never, not ever awakened US to feed her at night - we still set alarms - well, let's just say "always go with your gut!". When she falls off the bottle gasping and can't suck for more than few glugs in a row without tiring, when even in her all-too-still sleep she still breathes fast...that was her congestive heart failure, and probably not reflux. Holy. Crap. Well, anyway, here's an artists' conception. The little connection in the purple isn't supposed to be there:

She's being treated with two medicines right now (yes, on top of the two medicines for reflux, but those may be reduced if we see improvement from the heart meds). One is to reduce the swelling of her heart and one is to help her heart work better. Then she has three options:

1. If she improves greatly we could possibly be able to wait and see if the PDA grows shut on its own.
2. There is a procedure performed with a catheter to, uh, put a cork in it. This is minimally invasive but is often performed on older children. The meds might also be able to help her hold on till a pediatric cardiac surgeon thinks she's a good candidate for this procedure.
3. There is also heart surgery, which would be a ligation (tie it shut) of the ductus. They would go in on her side to do it. This sounds terrified...ok, I'm her mother and I say it IS TERRIFYING, but her cardiologist says this is usually performed little bitty preemies and they do fine. Well, he didn't say "little bitty". But he did say "FINE".

He also says that they're on it, and not to be scared. Ha. Ha. Ha. He is clearly not a mother. But

she's in better shape now than she was for the first three months because now she's on meds to help her heart and she'll get the help she needs. I asked him what this meant for her future, 1 year, 2 years, 10 years down the road. He said, "She's going to need interventions, but she's in good hands, and this won't even excuse her from gym class. She probably would never know she had it." Thank you, that was what I needed to hear.

So, insert heart joke here. She's got a "big heart?" There's a hole in her heart that can only be filled by...Dr. Ritz?" Ok, too early for jokes. Honestly, I'm 70/30. Ok/freaked out. But I'm thanking the powers that be that this was diagnosed and that she has these fabulous doctors. I cannot say enough about Marlton Pediatrics right now. I believe we may be on their speed dial.

I also told her doctor when he asked me if I had any questions: "Just tell me she'll be ok."

"Oh, she'll be fine. I know it's scary, but she'll be just fine."

Thank you.

Still, Holey Crap.

Heh. Get it? Holey?

Here We Are Again

Image courtesy of Zazzle.com

All those compare/contrasts of our older and younger daughters over the past 3 months have just been trumped. Here we are again, with this freakin' reflux. Just like big sister.

Disclaimer: I'm in a whiney mood. Although I'm well aware that this is not life-threatening and I thank God every day for my otherwise healthy baby, this is damned frustrating and there is nothing so cathartic as good whine.

Flashback to Febrary 21st, West Jersey Hospital pediatric unit.

Patty, nurse in pediatrics: "Does she spit up if you don't elevate her upper body?"

Me: "Yes."

Patty: "Does she sometimes wake up and scream for no reason?"

Me: "...yes..."

Patty: "Does she arch her back and do you find her in this arched position when she's been sleeping?"

Me, just realizing: "Oh no. I mean, yes."

Patty: "Ok, because I think she's a poster child for reflux."

Me: *bang head on wall* "I never thought about it till now."

Between the diabetes (mine), the non-stress tests, the tachypnea , the jaundice, and the heart murmur...all relatively small and controllable, but just scary enough to be, well, scary - I never once thought that we'd have another refluxer. We did that! We paid our dues, right?

Apparently not.

2nd Disclaimer: Infant reflux is usually no biggie. I mean, put in perspective, it's just annoying: They scream sometimes. They often puke and soak their clothes and yours, or projectile vomit across the room and somehow hit the couch, but they usually thrive anyway, and grow out of it by 4 or 5 months old. Sometimes they have pain and if their pediatrician is merciful they'll give you a little baby Zantac. This is a foul-tasting peppermint-on-steroids antacid that your baby will spit out at first but most will learn to like, since it's cooling when it goes down. Maddie didn't get the memo about learning to love Zantac, but Ellie eats it up. Then sneezes.

But all in all it's usually nothing serious. They still eat well, they're still happy most of the time, and they grow out of it quickly. A lot of doctors, including our former pediatrician who "treated" Maddie, called it " just a laundry problem".

Except sometimes it's not. My girls have the kind of reflux that hurts a lot. This is often called "severe infant reflux". It's so different from regular-old infant reflux that I wish they would give it a different name so we could stop sounding like melodramatic hypochondriacs when we explain why our baby isn't gaining much and is eating less. This diagnosis means that your baby learns that it hurts a lot to eat, more than they can ignore and more than Zantac can handle - so hey! Let's just not eat!

Your job is then to coerce them to eat with soothing things like swaddling, white noise, rocking, and if they're old enough, making rice soup (mixing formula with a bowl of rice cereal, letting it thicken, then mixing in more and spoon-feeding the thin rice/formula soup in). Or you can try switching the paci for the bottle at the moment when they nod off and pray they'll take a few glugs before they wake up and realize that HEY! I'm EATING! NOOOoooooooo!

All that was how Maddie got to her bare minimum oz. a day. "Make sure she eats at least 25 oz. a day, minimum. Oh, but don't ever force-feed her." , said crappy pediatrician. Riiiight. Feeding her in public or at someone's house was the worst, because frankly, it looked insane. Shhhhhing a flailing baby who is struggling to get away from the evil monster bottle. I'm sure many people thought we were crazy or over-worried parents who were force-feeding the poor kid. When Maddie was at her worst, I often heard:

• "Don't worry about it. " Ha ha. You have your child be miserable, throw up, and refuse to eat bottle after bottle that you try in vain, and see how not-worried you are.
• "Babies eat what they need. She's just not hungry." Really? Why does she scream, root for the bottle, latch on, take two sips, and melt into tears? Yes, most do regulate their apptetite fine. I'm sure yours did, oh well-meaning but ignorant person. This one does not, because it hurts her too much to eat.
• "Would this have happened if you had breastfed her?" (Only got this one once, but it still smarts after all the angst I had about never getting her to nurse.) Yes, and had that worked out I would have had to quit nursing and pump so she could have rice cereal mixed in to thicken the feedings and keep what we could in her stomach. Do they include that tidbit in La Leche League pamphlets?

There are two types of refluxers in the severe reflux category, really: Spitters and Silent.

Maddie was a spitter, always draped with a bib or cloth diaper. Always losing a quarter to a half ounce with every burp. Occasionally christening the floor, the wall, the crib, your hair, with spit-up. I can't tell you how many baths she needed or how many showers I needed because she lost her lunch all over both of us. This happens to a lot of reflux parents, though. The heartbreaking part of the constant spit-up was that you had to work so hard to get the bottle INTO her in the first place, and then - BLECH! - out it came. Not cool. They are supposed to gain 1/2 to 1 oz. a day in the beginning. She didn't gain for a few months and I finally got very diplomatic with her pediatrician and demanded a referral to a pediatric gastroenterologist. The specialist from CHOP helped her a lot and in a month or two she was significantly better. She was 7 months old when she started with this doctor, and we think a year or so when she was done with reflux meds for good.

Ellie is 3 months. She was 3 weeks when Patty named her the poster child for this lovely disease. She is the other kind of refluxer: silent. That means she doesn't often spit-up. It does come up, (gross!) and so it goes somewhere else. She's an aspirator - she sometimes sucks it into her lungs. She wheezes, chokes, gasps, Oh! it's lovely. And scary. Aspirators are at risk for pneumonia and other fun problems, but so far, thank God, Ellie just shows some labored breathing sypmtoms. Until this week, she rarely lost any formula at all. However, this week she's vomited 3 times. Hooray for Christening Uncle Nick's new house! But we think the pukiness may be because she's taking a little more now, and her little stomach still only holds so much.

You have to feed these reflux kids smaller amounts more often. Forget about getting to a nice 5 oz. bottle, 5 times a day schedule. E gets about 8 or 9 bottles a day, and 2 oz. is fine. 2.5 is an accomplishment. Like big sister, you have to do the same stuff to get her to eat. You can't really feed her very well when you're out of the house, mainly because it looks like you're crazy and DYFUS should come very soon. Then there's the syringe. When Maddie got really bad, and wouldn't eat for the whole day or something, we'd feed her by medicine syringe - 1 ml. at a time. Just enough to keep her hydrated. We hated it, to us it was hitting rock bottom. :-) Yeah, with Ellie we do it daily. It works pretty well, and most of the time she likes it. We talk, we sing, we do finger plays, and we squirt tiny bits of formula into her mouth. It's really not as ridiculous as it sounds. She eats, and it's quicker than convincing her that the bottle is not her enemy! Setting up bad habits? Well she's going to be on solids in a few months anyway, I consider it training-wheels for the spoon.

Ellie hasn't gained quite like she should, but she is still at least gaining. Her breathing worries me, but we're giving the changes her CHOP doctor has made a chance before getting totally freaked out that the breathing problems that landed her in the NICU and the ER (wheezing, retracting at the neck, rapid breaths) are still quite visible every day. She still contorts her little back into an arch a lot too, and you just see her and think, "that can't be good/comfortable". She turns her head to the side too, and she's rubbing the hair off the side of her head (instead of the back where most babies lose it from back-sleeping).

My biggest worry: that what cleared Maddie's symptoms up and made her feel better -and eat like a healthy baby - wasn't the meds or the changes to her feedings but the fact that she was getting older and moving on to solids, which stay in the tummy better. Maybe all the meds (don't get me started on how many different meds and how much it freaks me out to be giving them to a baby!) don't really help and we're just in for the long haul here. And that could mean we have MANY more months of this to go with Ellie. Every day counting ounces, trying to comfort her tummy-aches, wondering if she'll eat enough and if she does, will she puke, etc. Or she could get better really soon and, like Maddie's reflux days, this will all be forgotten. I like the latter outcome better, let's go with that.

Because literally, I didn't give this one thought after Maddie turned a year old. Every now and then Miss M would get sick after chugging water (she still doesn't care for milk!) but for the most part those worrisome, frustrating days when we would spend all evening alternating who would try to coerce a little liquid into her - they were completely, blissfully forgotten.

At bottle time now I get flashbacks and forget which child I'm holding.

Because reflux SUCKS.