Posted by: katedaphne | December 6, 2010

Creme de la Creme

It’s that time again. Since I have hardly blogged at all, I wasn’t going to participate. But per Mel’s reasons 5 and (sort of) 6, I am persuaded to go ahead and submit one.

All’s well here. Doing all the things I imagined I would, plus a few I never imagined.
It’s nice.

Need to go, a Little Monkey just came up and wants to dance to Ode to a Toad by that famous musician, Farmer Jason. (File this under “never imagined” — the Ode, not the dance, that is.)

Cheers.

Posted by: katedaphne | November 17, 2010

Still blogging, kind of

Two quick, mostly unrelated updates:

1. I know I said I didn’t want to blog much about parenting. However, I got someone to pay me for it. I’ll be contributing a post or two a week to the St. Petersburg Times parenting blog, Whoa Momma. I’m a copy editor for the Times. I have three little posts so far, check ’em out. (I get paid by the hour, not the click, btw.)

2. The Koala Bear is in the hospital. The whole family was wiped flat by a stomach flu. Unfortunately, heart babies have a very difficult time with things like that. She’s been sick since Friday, and we’ve been in hospital since Monday. She is on the mend. I hope to take her home Friday but I do not know if that will happen. It has been tough juggling the Little Monkey (thank god for grandparents!!!) and being at the hospital.

Posted by: katedaphne | July 19, 2010

Another babymaking fail

Well, I guess I’m not here much anymore. I discovered I’m not terribly interested in doing a parenting blog. There are a million of them out there, and I am more into just living the life than chronicling it, I guess.

But here’s some non-parenting, all-infertility-related news:

Just had a frigging chemical pregnancy. Miscarrying now, as we speak.

Dammit!

I thought we were DONE with this IF road….

We weren’t trying, obviously. But we weren’t preventing, either.
My doctor and a few moms in the twin club have asked me what birth control we are using since the koala bear and the monkey were born. I just give them an incredulous look. Really? Birth control? After what we’ve been through? Not really worried about birth control, actually.

So, yeah, a few weeks of weirdness, and then a few positive pee stix. A beta, 88. So am told to wait a week (a WEEK! oh, get me an RE for the love of god…).

So we spend a week visualizing life with THREE kids 20 months and younger. We already are planning to move to a bigger house — but it would have to be a LOT bigger for three kids (this place is pretty darn tiny). A week of thinking, if this is real, we are SO f—–, but yet, so glad. We decided to call it a Happy Nightmare.

And then, a second beta, 23.

Two days later, my period, and it is a doozy. Ugh.
I’d like to not think about this but with these cramps from hell, how can you not?

We have decided, this type of loss, at this time in our lives, is still pretty devastating. Every little life is precious. We didn’t want any more children, but when this one seemed to be coming to us — we wanted him. (see? we knew better. but we gave him a gender anyway.)

What does make it a bit less bad is that such a loss does not come accompanied by the fear/confusion/etc of personal identity as it does for someone with primary infertility. this loss is as real as any we experienced. but we are freed of the fears — this loss doesn’t mean i may never be a mom. I AM a mom. I don’t get to be THAT BABY’S mom, and that makes me sad. He would’ve been a cool person, I am sure. The world lost a good one, I think. But my life still does consist of being the mom of someone (two someones) who are here now.

For that, I am one freaking lucky person.
I know it.

I wish the universe would let me off this crazy train of infertility. I want to forget about it and carry on with my life. But every time I think I’m out, it keeps pulling me back in.

Posted by: katedaphne | May 13, 2010

“A family, at last”

The “sequel” to my newspaper story “The Longing” was printed in the newspaper on Sunday (yeah, Mother’s Day).

Here’s the link. A family, at last. I hope you like it!

***
Oh, and by the way, I have nicknames for the babies now. I will use them here if I ever get my tail in gear and get back to posting regularly, and I use them at home too. The heart baby is my little Koala Bear, and her sister is the Little Monkey.

Posted by: katedaphne | January 19, 2010

So much for resolutions

Holy cow, I knew it had been awhile since I blogged but I can’t believe it has actually been since Christmas! So much for the idea of trying to write every day!! Ah well, I will keep trying…

So, help me here. I need better blog nicknames for the munchkins. I don’t really want to use their real names here. When I was pregnant we called them Thing One and Thing Two until we learned the sexes, then we simply called them by their names. I’ve been calling them by initials, but I need real nicknames here, like the Indian Takeaways, or Little Butterfly, or some such. Suggestions?

So Thing One, Baby A, had her second heart surgery on Dec. 29. It was a long, hard day for her, and for me too. She recovered like a champ. Me, it will take a while longer. She was home in 7 days, on Jan. 5, and is doing great. We don’t keep her on her pulse-ox monitor during the day. We just do spot checks and then put it on at night, but her oxygen saturations have been sensation since this surgery. She is one tough cookie!

We are enjoying being all home together. We are working on getting into some normal routines and just doing normal mommy-baby things. We still have doctor appointments, followups and such, but not nearly as many. So we have more time to do fun stuff, like try solid foods. So far we’ve had rice cereal, oatmeal, bananas, and carrots. We also play a lot, on the floor, in the swing, and all over. We try to go outside for a walk daily, but lately it has been pretty darn cold here, for Florida anyway, but it should be better soon and we’ll be out in the neighborhood everyday and at the beach now and then too!

***

Got interrupted, it is now 24 hours later. Ha!

Being an infertile parent is a weird and wondrous thing. I was holding Thing Two this morning as she slept. Mike and I were just staring at her. We know all parents think their kids are the sun and moon, etc. etc. But when you have been through the war like we have — and like most of you, my readers, have been — it is different, I really think it is. All parents love their kids. But when you have looked into the maw of infertility, when you have truly and knowingly faced a future without them, well, words fail me. To look into their little faces, it is breathtaking. Literally — Sometimes when I look at them, I can’t breathe.

Posted by: katedaphne | December 25, 2009

A thought, and a merry Christmas

Last night I had an epiphany of sorts. After Baby M was in bed, Mike and I were hanging out on Christmas Eve. I called the hospital to find out how Baby A was doing. The nurse, Carmen, said they had been watching “It’s a Wonderful Life” together and that baby had just fallen asleep. It was a good report and I thanked her and rang off.

Then, cried a little, because I missed baby so much and wanted her with me, sitting next to our Christmas tree. *I* wanted to watch “It’s a Wonderful Life” with her.

And I thought of two and three Christmases ago, when we had a chemical and a BFN. I cried and cried on those those days. And you know what? The tears I cried last night felt just the same as the ones I cried those years ago. It was such a strange thought I almost stopped crying!

I mean, intellectually I know — this Christmas is WAY better. I have BABIES, for goodness sake!! But the sadness for A’s heart, and for not having her with me — it’s not an intellectual thing. I could tell myself this year was better, but I didn’t *feel* better at all.

And now I wonder, is this the way it is to suffer secondary infertility? To tell yourself, “yes, I’m a mom and I have a child,” but yet to still feel that same sadness? As a sufferer of primary infertility I could never really relate  — how could I, when *I* wasn’t and might never be a mom? And yet, and yet… I think a small part of me gets it now.

Still, the intellect doesn’t lie. It’s still better to have one than none, and this year IS better for me, because I got to open presents with one baby this morning and am going to go visit the other one real soon. And that’s no small thing.

And now, the lyrics to a favorite Christmas song of mine:

Welcome Christmas

Welcome Christmas come this way
Fahoo fores dahoo dores
Welcome Christmas, Christmas day
Welcome, welcome fahoo ramus
Welcome, welcome dahoo damus
Christmas day is in our grasp
So long as we have hands to clasp

Fahoo fores dahoo dores
Welcome Christmas bring your cheer
Fahoo fores dahoo dores
Welcome all Whos far and near
Welcome Christmas, fahoo ramus
Welcome Christmas, dahoo damus
Christmas day will always be
Just so long as we have we
Fahoo fores dahoo dores
Welcome Christmas bring your light
(hum next two lines…)
Fahoo fores dahoo dores
Welcome Christmas, Christmas day
Welcome Christmas, fahoo ramus
Welcome Christmas, dahoo damus
Welcome Christmas while we stand
Heart to heart and hand in hand

Fahoo fores dahoo dores
Welcome welcome Christmas Day…
Welcome, welcome Christmas day

Posted by: katedaphne | December 23, 2009

Not exactly a comfort

Battling infertility, you hear a lot of ignorant comments — the kind that are meant to be helpful but are really nothing of the kind.

“Just relax.”
“Just adopt.”
“You’ll get pregnant if you just adopt.”

To the list, I would like to add the comment that really gets my goat as a heart baby momma:

“Don’t worry — she’ll never remember any of this.”

While technically true, it does not comfort me in the least. In fact, it strikes me as criminally insensitive. Sure, she won’t remember spending months in the hospital (including her first Christmas). She won’t remember having all these operations, she won’t remember having countless IVs inserted and removed, she won’t remember being poked and prodded and messed with and drugged, etc. etc. etc.

BUT — she is experiencing these things right now. Doesn’t now count?! It makes me so sad that she has to face all this. I don’t want her to have to suffer any of this. *I* wouldn’t want to go through this. Why would I want my baby to? Remembering it is not the point. This is her LIFE. And I just wish she had a happier, easier one. Is that so wrong? We don’t tell adults going through tough times that in five years they will have forgotten all about it. Why do people think of  infants so callously?

Luckily, she is a pretty tough little cookie. She is one of those people who is able to bear up with a smile. She takes whatever is dished out to her and never holds a grudge. She doesn’t whine and rarely cries. She’s really a trouper and I admire her tremendously.

That said, I still wish her babyhood was a more pleasant one.

Posted by: katedaphne | December 22, 2009

CHD and ALI intersect

For my readers who are pregnant or hope to become so, here is a short but great article on the 20-week ultrasound. It’s not “the big u/s when we find out the gender!!!!” — it is a whole lot more. At ours, we learned we had two girls, and that one had a serious heart anomaly. We were sent immediately to the fetal cardiologist for further examination. By the end of the day we had a diagnosis, a plan for monitoring the rest of the pregnancy, and a plan for where and how the birth would take place. If these things had not occurred, our heart baby would’ve had an even more difficult time. In fact, I think the early diagnosis and detailed birth plan saved her life.

http://www.examiner.com/x-29454-Pregnancy-Health-Examiner~y2009m11d9-The-top-five-questions-to-ask-during-your-20week-ultrasound-to-detect-Congenital-Heart-Defect

The top five questions to ask during your 20-week ultrasound to detect Congenital Heart Defects

November 9, 8:58 PMPregnancy Health ExaminerJasmine Jafferali
According to the American Heart Association,(AHA) Congenital Heart Defects (CHD) are America’s #1 birth defect. Nearly one of every 125 babies is born with a CHD (almost 1% of all children born each year!).  Here are more facts and stats from the AHA:
  • Congenital heart defects are America’s #1 birth defect. Nearly one of every 125 babies is born with a CHD (almost 1% of all children born each year!).
  • Congenital heart defects are the #1 cause of birth defect related deaths. 1 in 3 children who die from a birth defect have a congenital heart defect.
  • This year almost 40,000 babies will be born with a congenital heart defect.
  • In the U.S. twice as many children die from congenital heart defects each year than from all forms of childhood cancer combined. Yet funding for research of pediatric cancer is 5 times greater.
  • From 1993 to 2003 death rates for congenital heart defects have declined by 31% due to advances made through research!
  • There is not yet a preventative cure for any type of congenital heart defect.
  • Of every dollar the government spends on medical funding only a fraction of a penny is directed toward congenital heart defect research.

Most of the time, CHD is overlooked during the 20-week ultra sound. Education is imperative and urgent. Dr. Nina Gotteiner, a fetal/pediatric cardiologist at Chicago’s Children’s Memorial Hospital provides imperative information and a list of proactive questions that every expecting parent should know. “By asking these questions, expecting parents and their doctor can proactively identify heart issues before birth, and as a team, work together to prepare for any potential heart issues that may arise after birth.” Here are the top five questions expecting parents should ask their doctor during the 20-week ultrasound exam:

1.Do you see 4 chambers?
2.Do you look at the arteries or outflow tracks as part of your scan? *Note: Extremely important to focus on artery views. CHD often missed if only a standard “chamber view” is performed.
3.Are the heart and stomach in correct positions? Both organs should lay on the left side of the fetus.
4.Is the heart rate normal? Is the heart rate too slow (less than 100 beats per minute), too fast (over 200 beats per minute), or irregular? *Note: A normal heart rate range for a fetus is 120-180 beats per minute.
5.Is the heart function normal? Does the muscle work normally? Is everything hooked-up correctly?
 

This is what families of CHD babies want you to know. Knowledge is power. Just by asking the right questions and being an advocate for your babies health is a step towards greater awareness

Posted by: katedaphne | December 21, 2009

CHDs — Congenital Heart Defects

The very wise Kami asked for a quick tutorial on the heart problems we are facing, so here is a VERY layman’s description on babygirl’s condition, including some of the medical terms in bold, for those of you who like to google things. It is complicated, but try to hang with me.

Her cardiovascular system is severely malformed. This apparently happened just a few days after implantation. No one knows why, but it is thought maybe genetic factors combined with environmental factors. It is not related to her conception (IVF) or her status as a twin. And the other twin is completely unaffected. First, the heart organ itself is malformed. The right ventricle, which pumps blood to the lungs to get oxygen, is extremely small and basically nonfunctional (hypoplastic right heart). Before birth they thought she might not have one at all but it turns out she does. But it doesn’t work, for various reasons. So, she has no way to get her blood oxygenated, so her body can’t get the oxygen it needs. So, she is a single ventricle patient. This is life threatening. Actually, it cannot support life; without corrective surgery she would surely die.

Also, the heart has two upper chambers, the right and left atriums (atria). Each is uniquely formed and has different functions, not just one happening to be on the left and one on the right. But hers formed as two “lefts” — so the one on the right side is a second “left” atrium, if that makes sense. I can’t explain exactly why this is bad, but it is. This is called left atrial isomerism.

In addition, the blood vessels in her cardiovascular (CV) system are seriously weird. Major vessels are in the wrong place, go the wrong way, connect to the wrong place, etc. etc. This is, among other things, interrupted inferior vena cava. She also has pulmonary stenosis, which I can’t explain but wikipedia can: a valvular heart disease in which outflow of blood from the right ventricle is obstructed at the level of the pulmonic valve.

But wait, there’s more. Her heart points right, not left, and is on the right side of her body. This in itself is not dangerous. Many people have dextrocardia and live just fine.

She has heterotaxy:  a rare congenital defect in which the major visceral organs are distributed abnormally within the chest and abdomen (copied from wikipedia). Her bowels are folded in an incorrect way (malrotation of the bowels), her stomach is more on the left than the right where it belongs. The appendix, which I think is supposed to be on the lower right side, was on the opposite — upper left? I forget. She had an operation to repack the bowels in a safer formation (the other way can cause dangerous or even fatal problems (volvulus), that is how Bee Gee member Maurice Gibb died at age 50-something) and at the same time they removed her appendix. It was healthy but appendicitis later in life would be problematic for her.

Associated with the isomerism is polysplenia — having many little bitty spleens instead of just one, which may or may not be functional. Hers appear to be functional, for now at least. If it (they) fail, she will need to go on prophylactic antibiotics for life.

There are other issues but these ar the main ones and the ones I can explain best, if only in “mom terms.” Oh, and did I mention she was on a ventilator for so long that she is basically unable to bottle feed? So she has a feeding tube (a g-tube, specifically a Mic-key button. We work with her on bottle feeding but it is slow going. She does have a good sucking reflex and loves her pacifier.

So, the corrective heasrt surgery she needs to survive is called the “fontan” series. First, as a newborn (in her case, at 3 1/2 days old) a BT Shunt is inserted to direct some blood to the lungs to pick up oxygen. This is merely a stop-gap measure to keep her alive until she is big enough to have the real repairs done. The shunt is a synthetic tube thingy. It doesn’t grow with her and is a tenuous but effective help for a small baby. Second is the “Glenn,” which is the one we are awaiting now. In the Glenn, the surgeon basically cuts and reconnects some arteries to send blood directly to the lungs without needing the heart to pump it there. It is mainly the blood coming in from the upper half of the body, but with our girl’s unusual blood vessel formation, it will actually reroute about 75% of her blood (this is a good thing). At this time the surgeon will also go in and make some other repairs inside her heart and to some other arteries, but the Glenn is the main thing. When she is two years old, the Fontan procedure will do the same thing for the blood coming in from the lower part of her body. (After the blood is oxygenated in her lungs, it comes back to her heart and the ventricle that she does have will pump it out to the body.)

So there you have it. This is NOT expert medical opinion or explanation, just a brief outline of our problems as I understand them. I thought learning the reproductive system so I could understand my IF treatment was difficult. This is a million times more complex. And the docs tell me that on a scale of 0-100, with 0 being a normal heart system and 100 being the most complexly deformed anatomy, we have about a 95. There’s no hope of me becoming as knowledgeable in this as I was for my own IF problems, so I just try to learn a little more each time they tell me things, to ask a question or two each day, and to know I have excellent docs who will give my girl the care she needs. They tell me when the fontan is done, she’ll lead a pretty normal life. She won’t be an athletic type, but we’ve been told not to raise her as “a cripple” (their word not mine) but as a regular kid who just may not be able to particpate in gym class sometimes.

One web site I like is http://tricuspid.wordpress.com/ — blog of an adult CHD patient. Great info, inspiring story. Otherwise, I do not spend much time on web sites bc it is too confusing. And frankly, her particular condition is very rare. I have been told her “cardiac anatomy is unique.” So there isn’t a lot out there that may pertain to her well.

I have learned that CHD are the most common birth defect, affecting 8 or 9 out of every 1000 births — or 1 in 112 to 1 in 125. Many are easily treatable or don’t need treatment. Some, obviously, not so much.

—-

Her Glenn has been rescheduled for Tuesday, Dec. 29. There was hope we could await that here at home, but she is not stable enough to do so, so she’ll be in the CV ICU (cardio vascular intensive care unit) until then and during the recovery period (1-2, maybe 3, weeks). I am so sad about this, not just that we can’t have her back, or have her back over Christmas, but that she is unwell enough to need to be there at all.

I am grateful to have babies to spend Christmas with, unlike the horrible Christmases past, which featured BFNs, chemicals, etc. But oh, this is hard.

Posted by: katedaphne | December 19, 2009

Other people’s kids

Even before our IF battles, I wasn’t fond of Other People’s Kids (my students in my middle school class excepted). I find that hasn’t really changed a whole lot now that I have a couple myself.

Actually, it’s really Certain Other Kids’ Parents I don’t take to well.

Exhibit A: In the waiting room at the hospital yesterday. We had just learned the surgery would be cancelled and were waiting for her to wake up from the anesthesia and come back to her room. I was SUPER stressed. I tend to remain pretty calm before and during difficult things, and have my reaction later. So I was pretty much silently and invisibly (except to my dh) melting down in my chair.

The waiting room is pretty small, and there was one other family there. Mom, dad, grandma, and 10-year-old boy. They were also waiting for a baby to come out of heart surgery. I gather the boy had really wanted to be there and the parents had allowed him to come, perhaps against their better judgment. But he was miserable. He was whiny and loud and annoying and just plain horrid. His dad clearly wanted to kill him. And so did I. I also wanted to kill the dad — for not finding a way to entertain him. Have you ever seen a 10-year-old boy without a handheld video game in his clutches? Me neither, this must be the only one in America. His parents just stayed on his case constantly — and loudly.

All I wanted was some peace to try to cope with MY situation. I begged the volunteer to find me another room to wait in, but there was nothing she could do.

Then the doc came and got this other family. Mom and dad went, leaving grandma and this rugrat, who then went into full pain-in-the-ass gear. His grandma didn’t try to talk with him or play with him or anything, she just carped at him and he just got worse and worse. Once she threatened to take him back to the Ronald McDonald House. I looked up and said (honest, out loud), “Would you please? Take him?” She didn’t respond and didn’t move. I continued to have my meltdown. I just couldn’t tune them out, all my energy was being used up holding my molecules together.

At last I decided if he wasn’t going to shut up, I needed to act. Strangling him would be frowned upon (we WERE in a children’s hospital, after all) so I decided to make a friend.

I got out my little notebook and made a grid of dots with a red sharpie. Then I went over and sat by the kid. Introduced myself, asked his name and asked him a little about the baby sister he was waiting to see. We chatted. Then I asked if he’d ever played the dots-and-boxes game — the one we used to play in class in junior high, back before kids had cell phones to text under the desk — where you connect the dots, two at a time, to form boxes. Whoever completes the fourth side of a box “gets” the box. When the grid is all filled in, whoever has more boxes wins. He’d never played, so I showed him and gave him a pen.

So I sat in the waiting room and played dots with a strange 10-year-old kid from New York. The poor guy just wanted something to do and someone to pay attention to him.

His parents emerged, and his dad thanked me for playing with his son. I didn’t say much, but you know I wanted to scream, “You’re welcome, asshole! I have nothing to do here except entertain YOUR kid!!!”

Then they all left and I finally had some peace.

When we finally do this surgery I am going to beg the ICU charge nurse to just let me wait in babygirl’s little room. I can’t be out there again, they will have to either admit me to the hospital when I collapse from stress or book me into the jail when I kill someone.

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