Welcome 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 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

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.

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

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

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

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.

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.

OMG what a damn day. Got to hospital at 6:30 a.m. to visit babygirl before she was taken to surgery, and to discuss the plan with the surgeon. The timing of this procedure got moved up so much so quickly we still had many questions, although we were in agreement to go ahead. At last all was ready and they took her back and we were sent to a waiting room.  We were to get hourly updates, but the beeper buzzed after only 30 minutes.

They had gotten her completely prepped — IVs in, under anesthesia and asleep, breathing tube in — when a doc tipped her head back and noticed the redness in the folds of her fat little neck had progressed: the skin was actually broken. Meaning there was a chance it could be infected. And with her on the heart-lung machine during surgery, that contaminated blood could get sent to her whole body, completely infecting her whole self and adding dramatically to the risk of DEATH. Needless to say, the surgery was off.

I am so livid. She did not have an open wound when I put her in the hospital a week ago! And yes, the folds of her neck are VERY deep and hard to see, let alone clean. But isn’t she in an INTENSIVE CARE UNIT? Cannot they manage one baby’s neck? WTF? Now her surgery, which she desperately needs, has to be delayed until her skin can heal. Looking at a new surgery date between Christmas and New Years. Trying to get them to let her come home and wait, but it depends on her condition next week.

Spent the whole day in emotional and mental overdrive. First awaiting the surgery, later dealing with the docs and nurses and getting answers, and halping care for the little peanut, who now has to go thru the anesthesia and IVs, etc, all over again. Today was a horrible day for her and I am so mad on her behalf. It is very much like the IF crap we have had to deal with — cancelled cycles, arguing with docs about which protocol or how many to transfer, etc. It feels like my life is running in a never-ending loop. Events and emotions just keep repeating themselves. Not only can nothing ever be easy, but even the hard stuff can;t just be hard. No, it has to be RIDICULOUS.

Luckily, my IF experience has taught me how to handle people in the medical field so I felt very comfortable talking to who I needed to talk to and questioning who I needed to question, confronting those who needed confronting, and demanding from those who were in a position to give the baby something I felt she needed. I used to be a bit less aggressive on my own behalf, more what-will-be-will-be. But not now.

It’s all very tiring though. Left the hospital at 6:30 pm, after 12 hours on the go there. I left the other twin with my mom tonight so I could eat some comfort food for dinner (mac and cheese, tomato soup), sleep and recharge. Tomorrow the struggle begins anew.

Yep, I am still here. Still infertile, too, though I have baby twin girls which helps me not mind so much. Sorry have been away so long — gosh, the girls are 4 1/2 months old now! It has been a wonderful but very difficult four months. My resolution though, is to make time to write a little something daily, or at least several times a week. Though I have the babies now, this is still the blog of an infertile. As opposed to a parenting blog. I will for sure mention the babies, likely in every post. But it won’t be primarily about them, it’ll be about me.

So, my little Heart Baby is having her second big surgery tomorrow a.m. As a mom, I am scared scared scared. I have trust and faith in the surgeon and all the other doctors, and I know it is the right thing to do. But it is still scary as hell. Especially as an infertile. We IFers KNOW that for every “95% success rate” that there is someone living in that other 5%. For years, it was me. Now, they are operating on my little girl, and the procedure has a 5% mortality rate. Meaning, there’s a 5% chance she could DIE in there or that something catastrophically bad, like a massive stroke, could happen. I don’t THINK it will happen to her. But as an infertile, I know that those things don’t just happen to “other people.” They can happen to me. As a mom, I need to keep the faith. These two personas are pulling me apart tonight, I have a massive headache.

I have been slowly dipping my toe into the CHD — congenital heart defect — blog/twitter community.  I thought once I had babies I wouldn’t have to think about so much medical stuff. I mean, I am pretty much an expert, as are most of you, on the human reproductive system. I was SO ready not to be thinking of all that all the time. But now, I am forced to become an expert on the cardiovascular system too. If CHD has its own version of the Strrip Queens, I haven’t found it yet. But there’s a lot out there, and the stories are heartbreaking, and inspiring. Just like in our ALI community. Eventually I’ll add some CHD blogs to my blogroll, and I hope you’ll join me in clicking over to some of them now and then.

Wow, it has been so long since I have been here. I feel bad about it but with the c-section recovery, twins, and the heart baby still hospitalized, even when I have had a moment (few, far between) I haven’t had the brain cells to put more than two sentences together. I intend to get a blog going to chronicle A’s progress but haven’t been able to do that yet either.

For now I am going to use twitter more, I think. A whole post seems too much, but 140 characters I can manage. Not abandoning this blog, I have a few ideas I’d like to write about, someday. Including Mom Spit (ie, I know I’m a mom officially now, c-section notwithstanding, b/c I used mom spit the other day on M’s hair. How weird is THAT for an infertile?)

So follow us on Twitter.com/HeartbabyMomma, and check back here now and then, I’ll resume writing, and post a few pics, when I can.

It’s been a bit hectic around here, but I wanted you to know: We have babies!

Babies A nd M arrived Tuesday around 2:30 p.m. via C-section. I suppose it was an uneventful surgery, etc. but — it was pretty momentous to Mike and me!!! A was 5 pounds 10 oz, 18 inches long. M was 5-13, 19 inches. Both have soft dark hair and pretty little faces.

I got to hold each briefly, then A was whisked off by the heart team to begin treatment at the other hospital, and M was whisked away too. Her blood sugar was messed up, so she went straight to the other nursery to have that monitored.

I don’t mind saying I was all for the C-section (with one breech and one transverse, it’s not like I had a choice). But when I got in the OR, I was quite petrified. I knew I would feel “tugging and pulling” and “touching” — but I didn’t know VIOLENT it would all feel! A popped out pretty quickly but M was wedged up in my ribs and the doc really had to wrassle to get her out. Once she lost her grip and strumbled backward, she was “tugging” so hard. Eventually M came free, though.

Recovery has been rough. I was very hopped up on meds that first day and really remember very little after M came out. Then it turned out I really didn’t do well on the pain reliever (percoset) — it made me so itchy I was about clawing my skin off. It’s a common side effect of narcotics I guess but it was way extreme. So Wednesday I was suffering quite a bit, until they were able to switch me over to Vicodin, which has been much better.

Today was rough b/c after all that I am still ridiculously bloated with gas, which I can’t seem to move in either direction. I spent most of the day curled in a ball holding my guts in and feeling nauseous and gross.  Let me just say, when you have just had your abdominals sliced open, vomiting is NOT much fun. And I was too sick to keep the Vikes down…. so you can imagine my day….

Poor Mike. He had a busy day today caring for his three girls! Baby A is in the cardio vascular ICU, and she’s stable, but honestly it is heartbreaking to see her. She has tubes and wires all voer her, IVs in her head, her arms are covered in gauze and weighed down by bean bags so she can’t scratch herself or dislodge her wires… It breaks my heart to look at her, the poor thing. I wanted to spend a lot more time down there with her than I have. But I’ve been feeling so poorly I haven’t been able to go. Mike has been there more there, and he is such a champ with her. He talkes to her and holds her hand and comforts her and loves her.

Today Baby M was found to have some jaundice, so she’s currently in a little greenhouse-like box with blue lights shining on her. Hopefully she’ll only need that for a day or two. Otherwise she is fine, and such an easy baby. Sweet temperament and very lovey. Her biggest trouble is she misses her sissy!

A’s first surgery is tomorrow (Friday) at 7.m. It should take about 4-5 hours, we are told. They’ll be putting in a shunt. It’s the first step in a three-step procress that will eventually reroute all her blood, to make sure it all gets to the lungs to get oxygenated and then out to the rest of the body. (She needs this help b/c her heart only has three chambers, not the usual four. She is missing a ventricle.) The surgery has a 95% success rate, so you really can’t ask for more. But of course being long-time infertiles we are well acquainted with that other 5%. So we are pretty worried and scared about tomorrow.

More tomorrow.

OB visit yesterday afternoon gave me quite a surprise. Fetal growth scan showed the babies are still non-concordant, though not as much as the measurement last week showed. So probably last week’s data was off but not completely off. Baby B was 5-4, Baby 5-11. The doctor assured me they are not dangerously apart, but she was concerned enough to consider taking the babies early. Then she checked my cervix, which is still closed but about 80% thinned out. So she decided for sure the babies need to come early.

So we have a new scheduled c-section day of this Tuesday, Aug. 4, at 2 p.m.

Mike and I are happy but in a bit of a daze. I guess I didn’t really internalize that this could happen, b/c everything’s been going so well (relatively speaking) and my health has been good — no contrax, good blood pressure, etc. The only complaint is that the foot and leg swelling has really gotten out of control. I was lucky to escape it as long as I did but now it is here and it is baaaadddddddd. My feet and legs look like tree trunks. My ankles are fatter than my feet. My legs are swollen all the way up to my thighs (gross). The pressure from all this swelling is pretty painful, even though I am keeping my feet up for most of my waking hours.

I had been planning a post about my fears about motherhood — can I be a good mom? Not just in the physically caring for the babies sense, but in the I-am-going-to-be-the-most-important-and-influential-person-in-someone’s-life-and-can-I-do-that-well sense. But no time for mooning about that now, just need to get ready!!  So I finally packed the hospital bag today.

If I don’t post again before the birth I will definitely have Mike post the details sometime Tuesday.

See you on the other side!!!