Phone tag

She said she'd chat with Dr. Simon, but she thinks what they saw going on with her heart in august probably isn't bad enough at this point to cause such a dramatic drop in weight gain, unless something new has developed. She does think seeing GI might be a good idea. She will call me back. It's never ending phone tag.

She also mentioned that every baby scale is different, but it's probably not THAT much different to alleviate concerns - that 3 ounces in 3 weeks is really low and that to be gaining the minimum of 15 grams a day, she needs 7 more ounces and the scales are probably not that much off.

Lillian got all caught up on her shots today, she got her 6 month set. No more until she's 12 months, yahoo! We go to the health department to do them, it's free that way. Free is always better than not free.

When we got there, I figured - hey, they have a scale, let's stick her on it! And you know, I've done the math, obsessive mom me. Dr. Simon said back at the beginning of this mess, they like their "heart babies" to gain anywhere from 15 to 17 grams a day at least (0.52-0.59 ounces) and that normal babies can gain up to 30 grams a day (about an ounce). At the beginning, Lily was gaining anywhere from 15-21 grams a day, and then in the two weeks before surgery, when she was her worst, failed to gain any weight at all.

So today, I knew that since she was 15 lbs 9 ounces on Sept 5th and it's been 21 days, that the bare minimum of 15 grams/day would put her at 16 lbs 3.5 ounces. That was the target, but she's been doing fairly well and gaining at a good pace, I figured it would be more. At least, I hoped.

She was.... 15 pounds, 12 ounces. She's gained a whopping 3 ounces in 3 weeks. I even asked the nurse if that was right - could the scale be wrong? Nope, it was calibrated two weeks ago. Awesome.

That is a full 7 ounces less than the minimum she should have gained... wtf. Since she eats like a pig and gobbles up 6 ounce bottles and inhales whatever solid food she gets with a big sloppy grin... something's not right.

This means one of two things - something's wrong in her intestines that is preventing her from absorbing the nutrients and calories, or her heart is getting worse again, and rather quickly at that. This is a very sudden drop off, she'd been gaining well all the way up into early September. Since she has no reflux, she doesn't act like eating is bothering her, and she has no history of GI problems other than some constipation, my money is on the latter of the two - why would something develop out of nowhere so quickly?

So I've got calls into Children's Mercy and our pediatrician - he returned my call and his nurse wants us to see the GI specialist at CMH... not sure what good that would do. But whatever. What's another test, really. I didn't hear back from CMH today, my call didn't get in until 4pm and my doctor switches hospitals mid-day, she was probably at the south side clinic already. So I get to sit and stew all weekend - will she want us to increase the calories in her formula again, will she want us to come in sooner... etc. Is my baby going to keel over in front of me someday?

Like Robin Williams says, I need a drug that encompasses everything... f**kitall. Maybe they could market it as Fucitol. When you don't want to leave a warm bed on a cold dark morning... Fucitol. When you don't want to go to work... Fucitol. When you don't want to eat or drink... Fucitol. When you don't want to face the bad news that you know is coming... Fucitol.

Wasn't surgery supposed to fix this? I am really at a loss for words tonight, and I don't know why.

Ramblings

The nurse called us back and said that Dr. F thinks we should try increasing the Miralax to 3/4 tsp, up from 1/2 tsp. Her chart indicates that she can safely have 1 tsp every day. I guess we'll try the 3/4 for a while, I'm sure it'll work at first and then I can see her building a tolerance to it and us increasing it again and so on and so forth. I'm about to give up and go back to the Nutramigen on my own, screw it.



Sometimes at night, I just stand and stare at her. I have a hard time laying her down at night and a hard time getting her up in the morning - at night I don't want to let her go and in the mornings I don't want to wake her up, she looks so peaceful just sleeping. Last night she wasn't settling down and I just stood over her crib, petting her hair and running my hands over her face. I'd cradle her cheeks and she'd settle down and look all peaceful and sleepy. I could feel her heartbeat and how quiet it feels, relative to what it was before surgery. I can't help but wonder what's still wrong in there... I try to imagine what it looks like, and if it's working harder that it should be... if it's still enlarged, if her right ventricle is slowly shrinking and becoming blocked. I wonder if she's a ticking time bomb, if one day she's going to turn blue and I'll have to spring into action and race to the hospital. Every day, I examine her, I look at her fingernails, I stare at her lips and temples... "does she look blue to you? no, honey. are you sure? yes, honey, you are crazy... she's fine..." and I know she is, but it's a mother's job to worry.



I treasure these moments, where I stand there and drink her in and know that things could have been so different, I wonder what could have been and how lucky we are. I want to cry for all the mothers who've not been so lucky, whose babies have been through 2 or 3 or 4 surgeries, who've lost their angels and have to find a way to go on. I want to cry for Chloe's mom, and for Elli's mom, and for all they've been through and all they'll never know, and for the blessing of the days they had with their babies here on earth. The pain takes my breath away sometimes.



Thank you to all my fellow "heart moms" and mothers of babies with medical needs, who've been so supportive and know exactly what I'm talking about. We just keep marching on, day by day, and thank our stars for what we've been given!

I'm getting gray hair!

Lily is constipated again! The Miralax just isn't cutting it I guess, it's like she's built up a tolerance! It worked fine for 2 weeks, and now she hasn't pooped since Thursday. So I call the doctor again.

I talk to the nurse... of course my doctor isn't in the office today! *bangs head.* So I had to tell THIS nurse the whole story... again. This is getting old. Now she has to relay that story to the OTHER doctor... like a telephone game! I wonder how many details will get lost along the way. She acted like she thinks this doctor will want us to go back on the Nutramigen.
I don't care anymore. I explained to her, again, why we tried to switch back to Gentlease. We've tried everything to keep her "regular" and nothing works for more than a couple weeks. I'm sick of making her miserable and I'm very wary having her on a laxative... I definitely don't want her to become dependant on it. I think I'd rather drain my wallet than increase the Miralax dose, honestly. Guess we'll see!

Parents as Teachers went well. She said Collin is very smart and Lily is delayed. Well, duh. I think she's going to check on her development next month before anyone refers to anyone who might be able to help her development.

Our follow up since starting the Miralax was today. It went pretty well, and I'm glad we had it because she's developed her first cold. I swear the nurses are lazy... they don't like to strip her down for weight checks unless it's a formal "well child check." I had to ask her to do it... you'd think with how much I've been in there they'd understand that she has a heart problem and it's very important to get an accurate weight. This nurse today was our doctor's head nurse, too, I was surprised.

But anyways, her naked weight was 15 pounds, 9 ounces. She was 14 pounds 12 ounces naked on August 19th, and I don't count the other two weigh ins since then because she had clothes on. I'm a psychotic mom and do the math every time she needs to get weighed... you know, the whole "if she should be gaining an ounce a day, this is how much she should weigh based on her last weight and the number of days since then..." My math came out to 16 pounds, 4 ounces. Which she isn't, but our ped wasn't concerned... he said she's following the same growth curve that she always has and at least she's not dropping off. Actually, at her last weigh in she had jumped up the curve a bit and now she's back down, but we also stopped making her formula extra strength so she's getting fewer calories. I just take what I can get and try not to panic about it. If the doctors are happy, then I'm happy.

He said there's nothing I can really give her for her cold, at her age and with her medical history. He said if it lingers on for days they do make a liquid Claritin that I can give her 1/2 tsp of to help dry her up. I'm going to just let it run it's course... everyone is sick right now, you know?

I mentioned that the Miralax has really helped, she's been pooing twice a day, and last night's was almost runny. We're going to scale back to every other day... he wants to get her on the lowest effective dose. Some babies end up only needing it once or twice a week. Hopefully that's mine, but Lillian doesn't really have a history of making things easier on me ;D.
We have our first appointment with Parents as Teachers next Thursday evening, they are coming to look at Collin and talk to us about him, they have a program for 0-3 years and then 3-5 years old. I'm sure he's doing fine, but it'll be nice to have some interaction with someone else and get new ideas for games and things that will help him get ready for preschool next year. They are still deciding who they'll assign to Lily, they had a new girl they were going to give to her but with Lily's medical history and her developmental delays, I think they're considering putting her with someone more experienced.

That's all for now!

Doctor Tomorrow

Tomorrow we do a follow up with our pediatrician from our impromptu appointment on Saturday. He wants to see how she's doing on Miralax and get a good, naked, accurate weight. If her weight gain has dropped off, it will give us insight to how her heart is pumping and if it is working overtime again.

I'm uneasy giving her Miralax, but whatever helps her feel better and reduces strain on her body is fine with me at this point, I suppose.

Will update following the appt tomorrow.

A downhill turn

A continuation of that ridiculously long post... starting now from when things have taken a change for the worse.

Not the greatest
Posted Aug 19, 2008 4:40pm
Lily had her appt today at the cardiologist. There was good, and there was not so good. She's gained another pound this month, she's about 14lbs 10oz or so, so we're knocking on 15 lbs door. There is no fluid buildup around her heart or in her lungs, so we get to discontinue the Lasix and go back to the regular concentration of formula - no more extra strength! Both of these things should really help her constipation issues and hopefully soon we have a baby drinking normal formula (well, Gentlease) and pooping normally! Hurray for that!
Her surgical repair looks good. There is a tiny, almost immeasurable residual VSD from where her septal wall hasn't quite grown over the patch completely - this is normal and should close with time. The amount of backflow caused by it is insignificant.
Her left atrium is still enlarged more than Dr. Simon was hoping for. This is causing stress on her mitral valve because it can't quite close like it should due to being stretched and there is a small amount of leakage resulting from that. Her left atrium functioning number has gone up a bit more, though, so that is good! It's shrinking slower than we had hoped but it still seems to be improving.

The biggest concern for now is her right ventricle. The wall was thickened up due to all that shunting of blood back into it from the VSD and I guess it's only gotten worse. The muscles have spread up into the ventricle, causing hypertrophy and increased strain. I did some research and this is very similar to one of the other symptoms of Tetralogy of Fallot. Lillian is missing the pulmonary stenosis (at least for now!) and the misplaced aorta that would complete that diagnosis. Dr. Simon said that a normal pressure gradient in the RV is about 5 and Lily's is elevated to 16. This has the potential to develop into a blockage type problem, essentially dividing the right ventricle into two chambers, and those numbers get really serious when they reach around 40 or so. There is no medication we could have given or can give to actually shrink the muscles back down - either it's going to happen or it's not. Dr. Simon was dissapointed, but seemed hopeful that this will correct itself. But that's what the VSD was supposed to do, too. If it does develop into something serious, the only fix is another surgery. Luck is apparently not on our side.

I left pretty bummed. I don't know if I can handle the prospect of another surgery. I feel like this is a test... of my faith, or strength, or whatever. I'm trying really hard not to be pessimistic, but I had a bad feeling about today going into it. I couldn't sleep at all - I got about 4 hours of sleep last night. I feel like we're playing with fire here, like my time is limited and the days are flying by so quickly, marching toward a ticking bomb. What if this just wasn't meant to be? All I want is my daughter to be healthy. I never thought it would be this difficult.

Doctor run - Sep 7, 2008 6:33pm
I ended up running Lillian to the clinic here on Saturday morning, because she hadn't pooped in a week! She was miserable... and of course pretty much all they told me was "well, yeah, she's constipated." Well, duh. This has been such an ongoing problem. It's hard to say what to do, she did fine on the Nutramigen while we were concentrating her formula and she was still on the Lasix. Everyone kind of expected her to do well back on the Gentlease once we stopped concentrating it and took her off the Lasix, but that hasn't been the case. All we could see was a nurse practitioner who we've never met, so I had to explain the whole story and why we switched formulas in the first place. Everyone pretty much agrees that Nutramigen is designed for babies who have a true allergy to the milk and soy proteins, and Lillian doesn't... she doesn't have hives or GI bleeds or anything, it was just much easier to digest and much worth the expense to ease the amount of strain on her before her repair. And since it is so expensive and she doesn't have an allergy, per say, insurance most likely won't cover it. I explained that caro syrup, prunes, apple juice, fruit... nothing is working. Yeah, I could give her caro syrup in every single bottle and prunes three times a day, but that's not good for her.

So before we go back to the Nutramigen, we're going to try 1/2 tsp, a very low dose, of Miralax. We can give it to her in the evening, mixed in 4 ounces of apple juice or something she'll drink. If that doesn't work, we can try upping it to a tsp, and if that doesn't work, I'm fine with going back to the Nutramigen - I've spent a gazillion dollars on this baby already, what's another $200 a month ya know? We'll see I suppose.

She did get weighed, but it was quickly and with clothes on, so I'm trying not to read too much into it. She was 15 pounds 12 ounces, up from 15 pounds 6 ounces on the 22nd of August, but that was with clothes on too. She was 14 pounds 12 ounces naked on August 19th. At first glance, it appears her weight gain has slowed down somewhat, but like I said, it wasn't accurate so I'm trying not to panic. She should be gaining an ounce a day or close to it, and it's been 18 days since the 19th, so she should be about 15 pounds 14 ounces naked, and obviously she's not. She's probably about 15 pounds, 6 to 8 ounces naked. Something like that. But you know us "heart moms," we worry about our "heart babies" over everything... and we have stopped concentrating her formula so that could be leading to the slow down in weight gain, as well.

I really want to clear her system out of whatever is backed up in it. She's been straining so hard to poop that she's been spitting up and getting to where it seems very difficult to breathe. She's been taking huge breaths and they are loud and it's just too much strain for her - it's not right. I get so worried when she gets like that, and I've been noticing it to a lesser degree when she gets really mad or really overly excited as well. Of course I freak out, but she doesn't turn blue and before I totally panic I want to see what this Miralax does and hopefully it eases everything up for her. She's not breaking out in cold sweats or turning blue at all, not that I can see... hopefully it's not related to her heart.

It's hard to sit around knowing that there's something not quite right still, and that it could be getting worse. The waiting game sucks. She's such a personality - she's generally very happy and loves her big brother, when he talks to her or sings to her she lights up. She's not a laugher, but she's definitely learned to squeal and uses this skill almost all day, to where my ears hurt. She loves her swing and bouncy seat, but she's not a fan of the floor and really hasn't made any progress in the learning to sit or crawling departments. Still no teeth, either! I can't believe she is nearing 8 months old.

We are supposed to go back to our regular doctor for a follow up on this Miralax stuff in a week or two, I will update again, then.